Life with Graves

Reality Checking In

2012-02-01T10:06:00.008-06:00

I promised myself for the sake of information I would post frequently and in detail through all of this pregnancy, yet I find myself almost at the end of the first trimester and I have only done an announcement post.

My sister had a breezy pregnancy with my niece - little or no morning sickness, felt pretty good the whole time, her skin cleared up and she looked youthful and gorgeous the whole time - so I just knew my pregnancy would also be easy.

Ha. Hahaha. HAHAHAHA! Boy was I sadly mistaken.

I had been sleeping much more than usual from the beginning, but about week 6 morning sickness hit me like a mack truck. I say morning sickness but really it was 24/7. I've been exhausted, sick to my stomach so much that I've lost weight, sore all over, and not sure I was going to make it some days. And my face is breaking out like a pubescent teenager.

But hallelujah I'm here and have made it to week 12 and some change. About week 11 my symptoms started easing some - the nausea comes and goes instead of being constant - which is a major improvement that I am thankful for.

Ornament we had made for my brother-in-love to announce our pregnancy at Christmas.

It was hard, but as others have told me a hard time in early pregnancy is a good sign, because it's one that will "stick." Old wives' tale I guess, but you'll take comfort in any way you can get it when you're convinced you're dying. And so far everything has been just fine with The Tiny, as we've been calling him/her, and the old wives' tale has held true.

Ornament we had made for my mother-in-love to announce her first grand baby!

So far it's been a very normal pregnancy - my Graves' Disease symptoms haven't flared up except for my eyes have been dryer, itchier, and easier to water than normal. My endocrinologist upped my levothyroxine dose from 137 to 150mcg at the very beginning and is seeing me once a month to keep an eye on my levels, so I've been making the rounds at the endo and the OB monthly which is just fine.

Normally you're not supposed to eat within an hour of taking the thyroid hormone replacement, but since I've been so sick my endo told me to eat a little with it because she'd rather it stay down with food than come back up and neither of us get any of the replacement. I am so thankful I have such a caring doctor - I'm not sure I would have ever embarked on this pregnancy journey had it not been for her concern and encouragement. It makes such a difference in the quality of life you have to get good medical care.

Hoping to post more in detail soon. It's just taking everything out of me some days to go to work so unfortunately the blog has suffered. Things are going well though: I'm 12 weeks and have almost survived the first trimester, Tiny is growing and doing just fine so far, and our families are very excited to prepare for another little one.

Finding Ourselves There, Again.

2012-01-25T11:16:00.004-06:00

Once again places that are near and dear to me have been devastated by a tornado.

My hometown and old stomping grounds in the northeast suburbs of Birmingham, places that shaped my life experiences, have been ravaged by some of Mother Nature's most terrible. Pinson, Clay, Chalkville, and Centerpoint are gathering the pieces of what the weather destroyed in the wee hours Monday morning. Jefferson County wasn't the only area hit - Chilton County also took a blow as you can see in a local news outlets chopper survey here.

We're pretty insulted, quite frankly, that national media outlets - namely ABC Network News - can't check their facts and tell our story correctly. You can read more on that here, where one of the most (if not THE most) respected meteorologist in this market, James Spann (a.k.a. Spann the Man), commented on the disappointment of their reporting.We're dealing with all of this using our southern humor, as you can see in this picture from the locals making the rounds on facebook. (Edit: for those of you who don't get the weather reference, a polygon is the shape our tornado warnings take on a map and this is in effect saying to Ms. Sawyer "You've been warned.")

It's heartbreaking to see our state go through yet another round less than a year after the generational event of April 2011, but We Are Alabama. And we will rise again. Prayers are appreciated as we recover.

Entering a "Grave(s) New World"

2012-01-17T08:30:00.001-06:00

You may remember a little over a year ago (wow - has it been that long?!) I did an interview with a gentleman named Mark on his experience with Graves' Disease.

Mark has now started his own blog here and the title, "A Graves New World," conjures up thoughts of an Aldous Huxley novel. Makes sense. Sometimes you do feel a bit like a Huxley character while Graves' is making your body and psyche do new and strange things.

Best of luck to Mark on his blogging endeavor. We'll continue to keep up with you bro!

The Tiniest Christmas Gift

2012-01-05T10:17:00.006-06:00

Just when I had processed the reality that our first journey to parenthood would likely be adoption...

Sometime in November, about a year after I wrote this post on preparing for the "next phase," the Lord graced us with a tiny gift (thankfully with no extra help).
I'm nauseated 24/7, exhausted, and just feel terrible in general...

And yes, there are things I'm having to worry about because of my Graves' Disease that other mommies do not have to worry about at this juncture...

But we are completely grateful that we got such a delightfully tiny Christmas gift this year!

More to come.

Making Time for Christmas

2011-12-15T21:31:00.003-06:00

So I've decided Christmas cards probably aren't going out this year...

And that's okay.

I'm allowing myself lots of grace this holiday season.

Are you?

Projecting Onto Our Pets

2011-11-30T09:29:00.009-06:00

I have recently become acquainted with the term "anthropomorphism." There's the somewhat convincing idea that animals and their owners resemble one another, but I've been faced with the fact I might have taken that a step further and made one of our sweet furbabies physically like me.

When I was living in the most troubled span of my battle with Graves' Disease, I would at times become convinced our cats were sad. They just didn't seem fulfilled, they would mope around the house, and otherwise act depressed. My husband never saw it, but I did. After I made it out of that valley I realized it was more me projecting how I felt onto Mr. Mustard and Molly and less how they really felt.
In the past year or so, Mr. Mustard had some personality changes that seemed like just that - personality changes - that "came to a head" (so it seemed to me) in the past few weeks.

When we arrived at our current apartment a year ago he randomly started drinking water out of the faucet. He had never done this before and it was as if one day lightning hit and he had this fully learned new behavior.

He started eating plastic. Not just licking or rubbing the plastic - I mean inhaling it faster than you could get it away eating plastic. Grocery bags, straws, wrappers, the plastic around those big bulk packs of water...he ingested it all if we didn't get it away fast enough.In the last 6 months or so, Mr. Mustard began being very needy. He has learned our getting-ready routines and if he sees us getting ready to leave he will meow and climb our legs trying to get us to stop and love on him.

He also earned a new nickname: "Hardcore Parkour" for the way he runs around and ramps off of stuff in the house in these hyperactive spurts he gets. You can see them coming - the deer in the headlights stare always precedes these bouts - but he will just jump and fly and holler all through the apartment. It's very entertaining, obviously, but odd he would develop it as he's gotten older.

Mr. Mustard has also had some weight loss, especially around his back end where his tail meets his body. It just feels extra boney lately to me but my husband says it's his hardcore parkouring.

Then he started over-grooming the past few weeks. A strip of hair was missing from one of his front legs, just as if someone had taken a hair trimmer to that spot, and soon more appeared all over both his front legs.

With all this in mind, I (in my normal fashion) Googled the poor fella to death. Suddenly I came across this article and it all made sense. Mr. Mustard was like me - he was hyperthyroid! I had to make a vet appointment even though the husband thought I was crazy. I entertained the idea that maybe I should have petted him post-RAI since they treat cats the same way they do humans for hyperthyroidism. Why had I not seen it before now?! Maybe his attacks on Molly were not asserting his dominance but instead him being in an ill mood!

The vet was very kind, worked Mr. Mustard over, took his time and explained everything...including why he thought the cat was not hyperthyroid. Graciously, he was not ready to charge us $180 for blood work when his heart rate wasn't above 200, his weight loss wasn't significant, he's not in the typical age range, and the markers just aren't there. The over-grooming is either physical or psychological, and since nothing had changed in our home he's pretty convinced it's behavioral.
So we were sent home with a week's worth of Clomicalm to see if that cures the over-grooming (then we'll know for sure if it's boredom or something similar) and go from there.

I'm still not completely convinced it's not early stages hyperthyroidism, but for now we'll have to wait and see!

Expecting Christmas

2011-11-21T13:34:00.006-06:00

It seems like everyone is putting trees up earlier this year! I had seen no less than six people post pictures of their Christmas trees my mid-November.

On a side note, has anyone on facebook gotten you with this little gem?
"Expecting again!!:{6weeks!! I know it's crazy ain't it? I can't believe it myself. I wasn't going to put it on here but I wanted to make it official=) I mean who would have guessed that we're expecting so soon!! Yup it's official..we are expecting Christmas in just 6 weeks!!! Repost if you have any sense of humor..."

I'll admit I put our Christmas decorations up early last year, but I had good reason. The year before we had no decorations and I really missed them.

These are two ornaments a delightful artist on etsy made for us, modeled after our furbabies. They're some of my favorite decorations to unwrap each year. (Just to disclose - she has not compensated me in any way for mentioning her on this blog.)

This year between lack of time and my increased patience, I am waiting until after Thanksgiving. Hopefully our tree will go up sometime during the weekend. (See previously mentioned time issue.) It is such a special time of year and I love putting a little Christmas in every room of our home.

Did you put your tree up early this year?

That Time of Year

2011-11-07T11:41:00.005-06:00

It's not even winter yet in Alabama, but the brief cold snaps have already worsened my battle with dry hands. They are dry, cracking, and painful.
It's always a challenge to find something that works well to keep my hands hydrated every since going hypothyroid. It takes a variety of factors to truly keep them healthy, but as you may know I am a habitual hand sanitizer and the dry air this time of year exacerbates the problem.

Recently my mom introduced me to some stuff called O'Keeffe's Healthy Feet and I was amazed at the difference in my skin after just one use. She has to take especially good care of her feet since she's diabetic and had a great experience with their foot cream. When I came across their hand cream I had to get it.
This stuff is amazing. After a couple of uses my hands feel better, look better, and aren't nearly as dry. It beats regular lotion any day. It doesn't have a scent and although it feels greasy immediately after you apply, within a few minutes it soaks in without residue. They also put a handy grip around the lid so you can close it up without having to wait for your hands to absorb the cream.

I need to communicate to you that I have not been paid or compensated in any way to endorse this product. I am simply sharing what has been successful for me in hopes it will help those of you reading.

May your hands be supple and comfortable this winter!

Cuddle Buddies

2011-10-27T15:44:00.002-05:00

Sweet furbabies, cuddling the day away. This must be the life!

Double Dose of Direction

2011-10-20T11:46:00.006-05:00

This week I had my second visit with the my new endocrinologist. It went well and I took in a list of questions to ask to be sure I didn't forget anything. I'm still very pleased with her care: she takes time to listen, answers all questions I have in detail, and has a very kind spirit.
As promised, I'm reporting back on what her answer was for missing doses. I was surprised at what I found out about taking my daily dose! Her direction was to take the dose as soon as I remember I've missed it and try not to double up on doses, but to double up if I had to. She explained that if I'm missing doses they could get a false read on my levels since the hormone builds (or reduces) in my system based on a constant input, so if I am missing doses completely I could get a false reading on my labs which would result in an unnecessary upping of my dosage. So much for the guidelines on the drug printout.
It took no time to get my lab results back and she put them in a handy printout with my previous labs so I can see any change. She said my TSH is a little higher but might be due to me missing a couple of doses lately. She also mentioned in her notes that the TSH goal in someone who is pregnant or trying is less than 2.5 and since I am under this she's not going to make an adjustment. (So far we're not, in case you're wondering.)

She also wanted to test my blood for diabetes due to some thirst and urination issues I'm having and my heavy family history. That information wasn't in the report she mailed me, so I'm going to call and see if she was able to get a value on what she could test without me fasting. I'm hopeful that I won't have to deal with diabetes but realistic in my expectations.
I also mentioned my recent eye dryness and itchiness, and she stressed to me again that I need to see the eye specialist because the Thyroid Eye Disease has to do with the Graves' Disease antibodies and not my thyroid.

I go back in four months for my next follow up!

Eye Witness Report

2011-10-12T12:19:00.008-05:00

It's been awhile since I've done an update on my eyes, so I thought I'd do a post dedicated to how my Graves' Opthalmopathy is holding. Thankfully, it is holding and hasn't gotten worse for some time.

My eyes have been static for roughly a year now and haven't changed (which is why I haven't updated) - there's a slight difference but you have to be looking for it to notice it. It's almost imperceptible even to me and I am grateful I don't have to avoid mirrors anymore.
When I visited my new endocrinologist, she explained that I need to go back and see my eye specialist regularly since Thyroid Eye Disease fluctuates independently of the Graves' Disease and thyroid levels. Although they're connected, she says there have actually been a few cases where a patient has had Thyroid Eye Disease and not Graves'. Making that appointment is on my to-do list...My eyes have been dry and itchy lately and I have had to start using eye drops every other day again. I'm using the single-dose vials (they're packaged this way because they don't have preservatives and are therefore gentler). I have previously used these and had great results, but this time I'm trying these out since I had a coupon. I'm hoping the dryness that has developed isn't an indicator I'm about to experience a flare up. I've also had to take my contacts out in the middle of the day a few times because they've gotten uncomfortable, and I'm assuming that's related to the lack of moisture.

For the first time in years I'm using this contraption that looks like a medieval torture device:
I didn't use a lash curler for a long time because let's face it: my eyes didn't need any help looking bigger/wider than they already were, so it's a bit of a milestone that I've been using one again for a month or two.

So there it is: your eye witness report from ground zero of Graves'. Hope you're having a great week!

Autumn Ambiance

2011-10-03T07:25:00.001-05:00

This weekend, Fall arrived in Alabama. Highs didn't get above 70 and the lows were in the 40s. The air is cool and crisp and the lack of humidity does amazing things for my hair. It's the small things in life.
While it's too hot to build fire just yet, I wanted to enjoy the ambiance of one so I put candles in the fireplace instead. All the comfort and none of the heat. Putting them in the fireplace also helped keep the furbabies from getting burned out of curiosity since it was behind the fire screen.I put a patchouli tart in the wax melter (I'm sure it has a proper name but I don't know it) and enjoyed the sight and smell of Mr. Owl all lit up.

This time of year also calls for a big pot of chili. Grocery stores in the area create end-panel displays of chili fixings at the first sign of fall. That's how important chili is in my neck of the woods. This is the only stuff I know that gets better when it sits in the fridge overnight.A bowl of chili, a "fire," and a chill in the air...these days are fleeting here in the south, so we like to soak them in when we can.Doesn't it just make you want to curl up with a blanket and something warm to sip on?

Missed Doses

2011-09-28T09:46:00.006-05:00

I like to think I know a lot about taking my thyroid replacement hormone: I've shared some tips I've found valuable along the way and try to mind them when I take my meds each morning.

Then I go and miss a dose of levothyroxine over the weekend. We were on our way to Tennessee for a family reunion and halfway up the state of Alabama I remembered that I forgot to get a pill for the road. I make every effort to take my daily dose at 10a.m., but Saturday I took it as soon as we got home around 8p.m. and didn't think anything of it.Tuesday I woke up with a migraine, full blown with nausea, and felt extremely lethargic. This is how bad I felt yesterday: I didn't eat until 7p.m. and I only had one cup of coffee the entire day. I won't say how many I have on a normal day (I'm not trying to be self-incriminating here), but suffice it to say it's much more than one cup.

There's only been one other time I missed a dose: that time when I missed it I skipped the dose completely and 3 days later I woke up with a migraine and lethargic. My guess is it takes that long for the hormone to bottom out in my body.
This exercise reminded me that I've never really been told what to do if I miss a dose. I know it's important not to, otherwise they wouldn't include this warning on the label, but when you're taking a daily pill for the rest of your life you're bound to forget it at some point. What then?

All the information I can find online for levothyroxine says essentially the same thing - if you miss a dose, take it as soon as you remember unless it's close to your next dose, in which case you skip it. Don't double up on doses.
I'm assuming if you double up on a dose you'll get flooded with hormone for a period of time when it builds in your system, although it looks like the same thing would happen if you take a dose late (just not as big of a spike if you'd doubled instead of overlapped).

This is a good question when I go for followup with my endocrinologist. I'll report back!

Belated Invisible Illness Week

2011-09-22T23:29:00.007-05:00

I'm a week late to this "party," but I wanted to be sure and share something about Graves' for Invisible Illness Week. Better late than never, right? Awareness is good anytime of year.

Graves isn't always an easy thing to spot, especially if there is no associated Thyroid Eye Disease or the person is in remission. Sometimes, like in my case, they just don't "look well," or other times the person may look perfectly fine.
Another BlogHer author did a "30 Things Meme" and I thought it did a great job of going in depth and decided I'd like to share it on my blog too. So, without further ado, here are my 30 things!

1. The illness I live with is: Graves' Disease, an autoimmune disorder where the immune system attacks the thyroid.

2. I was diagnosed with it in the year: May 2009

3. But I had symptoms since: Early 2008

4. The biggest adjustment I’ve had to make is: Learning to be less of a Type-A and keeping myself calm.

5. Most people assume: That I'm "cured" since I'm in remission and don't exhibit so many symptoms anymore.

6. The hardest part about mornings are: Forcing myself to get up when I rarely get a good night's rest.

7. My favorite medical TV show is: The Doctors. I think the variety of backgrounds they have represented on the show is a good thing.

8. A gadget I couldn’t live without is: A Droid-based phone. Syncing my calendar with gmail is a stress-saver for me.

9. The hardest part about nights is: Trying to "wind down" - a hyperthyroid body (even after treated) is hard to put to bed.

10. Each day I take __ pills & vitamins: 1 pill (thyroid hormone replacement) and 1 multivitamin

11. Regarding alternative treatments I: I think they are much more beneficial than they are given credit for and wish they were easier to access.

12. If I had to choose between an invisible illness or visible I would choose: This is tough. I believe invisible, because it's much more conducive to putting on my brave face than a visible. Especially after having had my Graves' become very visible at one time because people are unsure how to act appropriately when your appearance is affected.

13. Regarding working and career: I quit working for a few months and it was the first time my health had improved since becoming ill. It's impossible for some, by I completely support stepping back and focusing on getting better quicker. Also, since I worked in radio, having thyroid issues threaten my livelihood made me realize how important it is to invest in things eternal. Your ability to provide for yourself could be taken away in a moment.

14. People would be surprised to know: I am thankful for having Graves' Disease; because my body failed me at such a young age I have a perspective on the brevity of life some people don't get until they are much older.

15. The hardest thing to accept about my new reality has been: I can't be everything to everyone and making my expectations realistic instead of unattainable. I also need way more sleep than I think I should and that's a constant battle.

16. Something I never thought I could do with my illness that I did was: Regain control over my body.

17. The commercials about my illness: There are none! Perhaps as more awareness is brought about.

18. Something I really miss doing since I was diagnosed is: I miss the sense of being in the prime of your life in tip-top shape and trusting your body isn't going to hinder you from anything you want to accomplish.

19. It was really hard to have to give up: My independence. My self-sufficiency went out the window after I had radiation, and my husband was gracious enough to care for me. Thankfully it was only a temporary thing.

20. A new hobby I have taken up since my diagnosis is: Blogging! And I'm enjoying it.

21. If I could have one day of feeling normal again I would: I probably wouldn't recognize it, because I haven't been "normal" in so long!

22. My illness has taught me: That life is a vapor. No matter how young you are, you are not guaranteed tomorrow.

23. Want to know a secret? One thing people say that gets under my skin is: When people try to paint things in a positive light, like being unable to do things is somehow a blessing in disguise. Perhaps it is, but let me determine that for myself - I don't need any coaching from you, especially if you have never had a lifelong illness.

24. But I love it when people: Say things like "You are so strong to go through this," or otherwise stroke my ego. Who doesn't like that, right? Ha.

25. My favorite motto, scripture, quote that gets me through tough times is:

2 Corinthians 4:16-18

¹⁶ Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. ¹⁷ For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, ¹⁸ while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal.

26. When someone is diagnosed I’d like to tell them: Find an endocrinologist who wants you to be an active participant in your living well. Also, don't lose hope that you will find the pre-Graves you - they're still in there and will be return.

27. Something that has surprised me about living with an illness is: That it doesn't have to define me as long as I don't allow it to.

28. The nicest thing someone did for me when I wasn’t feeling well was: My husband allowed me to stay in bed as much as I needed to and didn't judge me once for it.

29. I’m involved with Invisible Illness Week because: I want to communicate to those living with an invisible illness that there is hope.

30. The fact that you read this list makes me feel: That this list and this little blog is doing its job! Thank you.

A Sorrowful Woman

2011-09-19T09:31:00.008-05:00

After a few years of "preparing," my husband went back to school this fall to pursue his bachelor's degree. I am so proud of the way he has motivated himself to do well in his classes and dig into his school work.

I fully expected him going back to school to make him a more fulfilled person, but I did not expect it to hit as close to home as it already has in a matter of weeks.

As Brian is studying one night, he asks me to read a short story his English teacher had them read and write an essay on. The story, A Sorrowful Woman by Gail Godwin, details a woman who (as I interpret) is dealing with debilitating depression over her identity as a wife and mother, eventually failing to cope and locking herself away. Through the course of this time she is unable to perform daily duties and her husband handles both of their duties so that she may focus on "getting better." The struggle with this woman over something unidentified and intangible is all too familiar.

As I finish the story, Brian tells me he identifies heavily with the husband. It is almost a mirror of our lives at home when I was sickest with Graves' Disease (although we had no child to care for). To hear this was heartbreaking to me, much more than I would like to admit, but made me thankful in a way he had an outlet for what he was feeling during that time.
I also identified with the woman - again, much more than I would like to admit. At times I felt my very identity was overtaken and held hostage by the disease. At some points I felt like my "old" self had been lost forever; that she would never return and I could only hope to be a shell of what I was before. We went through some dark days: weeks where I could barely function in daily life, hours where I couldn't stand myself enough to even attempt to be kind to him, and times I could no longer hang onto hope that better would come. During this period I, like the sorrowful woman, would lock myself away in a room and wallow in my grief.

The story describes the husband as the "perfect" husband, and I might be tempted to challenge Brian identifying himself as "the perfect husband," except he's right because he is. I didn't say the perfect person, just the perfect husband. For me. He can be cocky at times, but this is an area where he can afford to be. Trust me...
Thanks be to God, the girl I was pre-Graves' showed back up unexpectedly one day, and I began to regain some control over what my life looked like.Now I like to think of disease as "background noise" instead of a foreground definition. Unlike the woman in A Sorrowful Woman, my story didn't end with one last "hurrah;" it continues with many of them.

I am reminded, oft unexpectedly, the battle with Graves' Disease will not be fought only by me, but by those around me. It affects all those close enough to love me, because they are dear enough to care. I am grateful to know that I walk this road not only with others who have the disease, but with the ones who will stand me up like Moses in the middle of battle when I grow weary and can't continue. They ensure the sorrowful woman and her husband are characters we identify with for a period of time and not forever.

Saturday Exposure

2011-09-17T10:53:00.004-05:00

This morning my post on bruising was featured on BlogHer's homepage!

This is an honor and I am grateful for the exposure.

The looks I got the week I had the "twin bruises" were priceless...guess they thought so too!

Pretty cool.

Black and Blue (and purple and yellow...)

2011-09-01T10:16:00.005-05:00

Life is much more colorful

When you bruise easy.

And last week I had bruises of varying degrees

On all four limbs.

Don't worry, no one has been grabbing on me.

I just have terrible coordination and the unfortunate luck of getting twin bruises.

Go ahead, laugh.

Getting the Go Ahead

2011-08-26T07:57:00.002-05:00

As I mentioned in a previous post, I am very pleased with my new endocrinologist after having my first visit. She was very informative and reassuring regarding many aspects of my health.

One of my main motivators in getting a new endo was that I wanted someone who cared and was willing to let me be proactive as we seek parenthood. I didn't believe my old endo would have provided the concern I thought a pregnancy warranted and he did nothing to quiet my fears about it either. (As a matter of fact the only thing he told me was that I'd need to have my levels checked every trimester - which will blow your mind when you read all my new doctor shared with me.)

I have been off the pill since March in preparation for this appointment with the endocrinologist. I suspected there would be some interaction/changes in my thyroid hormone levels due to the estrogen, and she confirmed that was correct. She said something about the proteins in the birth control pill affects the absorption of the thyroid replacement, and it was good that I had been off of it for awhile for her to do blood tests. I asked if I should get my thyroid antibodies tested beforehand and she did want to do that so we would have a baseline on record. She said the antibody levels can fluctuate and my impression is they can be a good indicator if something is going on such as my antibodies attacking the baby's thyroid.
Let me go ahead and say here, just so you know, I am also using this post as a vehicle to show off my niece. Again. Because she's awesome. And she's probably partly to blame for my being ready to start a family. Okay - definitely partly to blame.

I explained to her that we were ready to "let nature take its course" with a family and that I was scared it would be a complicated pregnancy if we were to conceive.

Listening to her response is when I knew she was a good doctor.

She reassured me that I should not be scared to conceive and was not doing anything wrong by doing so. During her residency she says she saw many pregnant mothers with thyroid issues, and during that time she only saw one baby that had problems from the thyroid antibodies crossing the placenta. She said she saw some mothers who had untreated Graves' Disease, were still hyperthyroid, and gave birth to perfectly healthy babies (that put me at ease more than anything, I think).

According to her, having Graves' is not a guarantee of a high-risk pregnancy and I just need to be sure the obstetrician is aware of my auto-immune disorder. This way they can watch the child's development closely and, if needed, actually check via ultrasound from a very early stage to see if the baby is developing a goiter (isn't that amazing?). If, by what she believes is a pretty slim chance, I do become classified as "high-risk" during a pregnancy, it would just mean I would go to a special OB and go in for more visits and be watched more closely.

I was so relieved to hear this information. It really took away the fear I've had of something terrible happening that I could have prevented in some way.

So what happens if and when we get pregnant? She tells her patients the first phone call you make to your husband, the second to her! The reason being we'll have to up my thyroid levels as soon as we conceive. Basically, a baby doesn't develop a thyroid until 6-8 weeks of gestation, so they are totally dependent on the mother for thyroid hormone prior to that. It's almost as if the mother has to go on hormone replacement for the both of them, and she says normally it's 1.5 times her normal dose. Of course the levels will have to be monitored throughout the pregnancy.So, perhaps Layla will have a cousin soon? We'll see! I'm just thankful for the peace of mind to see what happens.

The biggest thing I took from all of this information and what I would like other women with Graves' Disease to take away is there's no reason to be scared to conceive. Medicine has come a long way and more than that, God has a way of looking out for these tiny people. It has been a great blessing to get the information and reassurance I was seeking as we give all control to Him on "family planning." And if we are unable, that's okay - even if we can I still want to adopt and am perfectly fine with that. I'm just excited to be able to know which avenue we need to pursue first.

To the future!

Broken Record(s)

2011-08-22T23:05:00.008-05:00

This past week, I had one of the most liberating experiences I have had since starting my journey with Graves' Disease.

Friday morning I visited my previous (and first) endocrinologist for the last time. I cannot express what joy I had walking out of that place knowing I never had to go back. I know everyone who saw me wondered why I had such a wide grin on my face! If they'd have asked, I'd have surely told them.

Surprisingly, the nurse was accommodating and cordial when I called to request she prepare my medical records. I needed to give her some time to prepare them (I gave her about a week) and come in and sign a release. When I picked them up, the conversation went like this:

Nurse: "I'm guessing you're going to someone else for your care since you're picking up your medical records."
Me: "Yes ma'am, I am."
Nurse: "Well we're sorry to lose your business but we understand." (It was almost as if she's been through this many times before...)
Me: "Okay - thank you. Have a good weekend!" (walk away resisting the urge to click my heels on my way out)

And as simply as that I had my freedom to go to whomever I choose for my care. I asked myself why I waited so long! Then I remembered I was waiting on my insurance to kick in. I was so excited that I opened them up immediately when I got to my car. It was very interesting to read all this information about myself that had never been communicated to me before. Also interesting were things he had recorded on my record and never explained to me.It also brought back the overwhelming feeling of sorrow I had when I first got my diagnosis of Graves' Disease two years ago: the devastation of knowing I have a potentially life-threatening disease, the weight of making decisions that would impact me forever, and desperately trying to hold in anger over dealing with this when I was just a young woman.

Ideally, an endocrinologist would help you navigate these unfamiliar waters, but for me this doctor only pushed me further out to sea. Any objection I had to his care were quieted by other care providers ("He's one of the best in the nation!" "He's forgotten more about the thyroid than you or me will ever known in a lifetime!") and I began to believe that if his care was the best I could hope for, there was no hope for living well.

But I have always been a bit of a rebel, and I refuse to keep up the status quo because your peers think you're amazing. What matters is me and hundreds of other patients sitting on your table thousands of times a year, trusting you with our lives. We will not be bullied or held hostage, prevented from finding someone who cares!

Unfortunately, the more I hear about this doctor and the organization he is a part of the more I am convinced that he is representative of their whole culture. I think they are only concerned with research and getting published and view their patients as a means to achieve that. I truly believe my endocrinologist sees patient care as a necessary process to fund and create more research. He has certainly never left me with the impression that he cares about the patient. And it's not just this doctor - I have heard from individuals who have been seen all over this organization and have stories of sub par care. It's as if trail-blazing and getting published are their main concerns, with patient care coming in a distant second.This envelope full of papers says I don't have to be bullied into believing a careless, crass endocrinologist is my best option. It says I can take control of my care.

And I did.

New Horizon

2011-08-17T13:30:00.007-05:00

Today I went to my new endocrinologist! She exceeded my expectations and I am so relieved to have someone who is genuinely interested in my being well-informed and living well. It's going to be so nice to go see my doctor and not dread it because feel like I'm being bullied the whole time.

I have had some success in getting my records from my previous endo (which, as you may know, I was worried about) but did not have them in time for my appointment today, so I took a list of my lab dates and results and any changes in dosage.

Everyone at the front desk and all the nurses were very nice and personable, and the doctor was willing to take the time to hear about how I was feeling and answer questions.

She looked over my legs (something my previous endo has never done), arms, checked my eyes for lid lag (which my previous endo only did at my first visit with him), felt my thyroid, and checked my breathing.
She asked about my thyroid eye disease and told me I needed to keep a close monitor on that with an ophthalmologist. I'll have to make an appointment with the specialist I saw last year and have them look at my affected eye again. She suggested that will be something I need to do for the rest of my life so that any fluctuations in severity can be caught early.

As far as the discolored nodules on my legs she said that it wasn't associated with the Graves' and is probably something cosmetic and not likely pretibial myxedema (welcome news!).

She asked me if I had any uncomfortableness in my chest or fluttering, and I told her while I had chest pains quite often in the year before and after my diagnosis, they had slowly waned over time since becoming hypOthyroid and become pretty non-existent.

She was very informative and reassuring on conceiving. I want to dedicate a whole post to that because she gave me so much information, but she explained to me I should not be scared to conceive and that my Graves' Disease is not a guarantee of complications or a high-risk pregnancy.

She also said it was good I had been off of the birth control pill since March so she could get a pure read on my levels, because it most likely will change my dosage of thyroid hormone. She's also testing my thyroid antibodies in my blood work since we're considering getting pregnant (more on that in the dedicated post).

I can expect my lab results next week in the mail and she'll include a new prescription for my levothyroxine, then I go back in 2 months to check levels since they'll probably change my dosage.I'm excited to see what my numbers are and what the next few months will look like for my Graves' Disease!

Thank you, Lord, for better care.

Happy Handwashing To You

2011-08-05T08:44:00.002-05:00

A few years ago when swine flu was a major player in the public psyche, the CDC focused much of their energy on a hand washing campaign. It involved singing a song (either the Happy Birthday tune or your ABCs) to time yourself, ensuring your hands got clean.

It was a great public awareness campaign - and certainly washing your hands is one of the best ways to stay well - but with more research and thought, I'm wondering if soap is all it's cracked up to be.

I have spent many years as an antibacterial soap and hand sanitizer junkie. It fed my germophobe-ness quite well. I'm still recovering, but I'm doing much better.

At the height of my Graves', I was using hand sanitizer and washing with soap several times a day. By several I mean I probably qualified as OCD. More than 15 times a day. Then having an auto-immune disorder further confirmed my fear of germs and encouraged me to keep feeding this mental habit of sanitizing all the time. I had to protect myself, so I thought, from these evil germs I can't see but surely are there. Anything on my hands that I didn't expressly give permission to be there must be bad, right?

Not necessarily. And while I was busy killing whatever germs were on my hands, I was also killing my skin and its natural ability to restore itself. We all know dry hands are a specific curse on this thyroid journey, and I was just exacerbating the problem.

Here's the interesting thing about soaps: antibacterial hasn't proven to be any more effective than regular soap. As a matter of fact, many believe (as do I) the effectiveness is in the rinsing of your hands, not the scrubbing. That's why health officials suggest using hand sanitizer as a second choice instead of a first - because it attempts to kill the germs on your hands instead of rinsing them off your skin and removing them completely.

More concerning than the dry skin is this mystery stuff Triclosan -which the FDA is researching with other substances as a possible endocrine disruptor. Yep, just like chemicals I was cleaning my kitchen with and plastics I was drinking from, I was probably coming in contact with loads of this stuff daily by overdoing the hand washing and sanitizing. And it just so happens to be a *potential* disruptor of the endocrine system. Auto immune disorder, anyone? There's even some concern it could be contributing to the rise of "superbugs." Things like this convince me not all micro-organisms are bad.

Am I suggesting you swear off soap? Of course not. But if you need more cause to curb your antibacterial habit, take a look at this article which says Triclosan was originally registered as a pesticide. Who wants to take a bath in pesticides??? NO thanks. In my daily life I will use chemicals as sparingly as possible, including soaps containing mystery substances.

As I've come to embrace more "natural" and less "man-made" substances, this has been an area I have changed. Now I will try to stay away from soap unless I've handled something like raw meat or before I leave the restroom. When I want to wash my hands and can recognize that it's me being mental and not a real need (like when I think about all I've touched through the course of the day), I'll rinse them off with water. No soap. Since the effectiveness is in the rinse, I've achieved all the benefits without the dryness. And fed my OCD just a tiny bit.

Getting Prepared: Zombies.

2011-07-27T16:19:00.004-05:00

After updating Internet Explorer, I've discovered it's playing even less nicely with Blogger (if that was possible). I'm giving Firefox a try for editing my posts and so far I've been really pleased. It's different, but I'm not having to go to html to put links inside the posts and that counts for a lot in my world. My browser should make things easier, not harder, right?

Some of you may have already seen this (it's kind of old news) but it's still entertaining.
Preparing for the Zombie Apocalypse, CDC style

The husband says their suggestion of waiting at a meeting place outside is a big FAIL ("Hole up in the house and protect the fort!" he says). He also says arming ourselves would be essential to surviving, and they didn't mention that, but I still think it was a funny social media campaign.

Happy Wednesday!

The Waiting (is the Hardest Part)

2011-07-22T10:35:00.015-05:00

Something kind of big happened at the beginning of this month. Well, actually a few big things happened this month, including lots of birthdays in my family, but this particular thing I've been super excited about. I've been waiting for this since we made the decision that me working part time was what was best for us, which meant giving up my benefits.

We put all those much-thought-out decisions in motion on July 1st last year. And this year on July 1st my waiting period on my new insurance for pre-conceived conditions ended. So did my waiting on maternity coverage. Now, I can start getting some real care for my Graves' Disease and give all control on planning a family to the Lord.

I've got an endocrinologist in mind that a good friend who also has Graves' goes to, and more than one person has recommended them to me. My mother has her diabetes treated at this same group and has been very pleased.

I will have to get a referral - hopefully my OBGYN will do that for me, since he referred me to the current careless doc - and I'm not looking forward to explaining to him again why I need another endo. He believes from a professional standpoint this guy is one of the best in the country, and he might be right. But nearly all the patient feedback I've heard on this endo has been negative. My experience has almost wholly been negative. I mean, there's really no excuse for this. I'm tired of the numbers game and I just want to be at a good level for us to stop preventing family growth, if you get my drift. And I want an endocrinologist who cares about my well being.

So thanks to July for big things. Monday, I'm calling to request a referral to the new endocrinologist I have in mind. I have a feeling getting my files transferred will be a challenge given the trouble I've had getting them myself, but I'm going armed with all the information I have to minimize any impact from their hesitation to send them.

The next phase in living well is about to begin. And I am very excited.

For Layla

2011-07-19T09:05:00.000-05:00

I wrote this a few weeks ago for my niece, but I'm just now getting around to finishing it up and posting. I hope she will enjoy reading this when she's older.

Today you are with me for the last time, and I am sad! You stayed with Auntie Criddy (your mom started that nickname) Monday-Friday from April 25th to July 1st. The first week doesn't count because your mom had a hard time leaving you to go back to work. I sure would have too.

I wrote in a card for you for your baby book, but Auntie Criddy is much faster with a computer and it's probably easier to read than my handwriting, so I decided to do this post for you too. Also, I can add pictures here, and you'll want to see what a cute baby you were!

Auntie Criddy had a hard time getting up most mornings, so I made your mom a key so she could let herself in and drop you off. Many mornings we'd sleep a few hours before we really got up and going.You loved to lay on your play mat - it's got all sorts of fun stuff to reach for and manipulate. When you first came here, you couldn't reach to touch the bird that plays music. Now you grab it and tug on it with no trouble at all!
On this particular day I got a good laugh because your daddy had dressed you backwards (ruffles are supposed to be in the back). It also was not Friday, and when I texted your parents the picture and captioned it "Who dressed me this morning?" your dad texted back "Wishful thinking."One of my favorite things to do is put your hair in a mohawk after your bath. You arrived in this world with the most beautiful blonde hair and you look a lot like a kewpie doll. Just precious!
Auntie Criddy and Uncle B's cat, Mr. Mustard, is your buddy. He likes to sit next to whoever is holding you and comes and checks on you periodically throughout the day. He pawed at you one time and it hurt your feelings, so I made sure to cut his nails in case he did it again. He stalks your toys and wants to play so bad. Our other cat, Molly, is just kind of indifferent, although she smells your toes every once in awhile. Every day you were with me, I sent your mom and dad a picture or video of you because it brightens their day to see you when you're away. They loved seeing what their Little Boogie was up to.

Me and a good friend took you swimming for the first time on June 20th. You loved it. I thought you might like it, but I had no idea how much you would love it...you talked, kicked and splashed until you passed out. We laid you on a chair and swam a bit longer before we went in, and you hardly stirred the whole time you'd worn yourself out so much.

While you were here you slept in the same playyard that your cousins Gabriel, Nicholas, and Tyler all have when they've been here. You rolled from your back to your tummy for the first time on June 28th and acted more surprised than I was! You like to babble and yell, kick your legs, and since being here have started reaching and grasping quite well. You also give a smile easily.

Big things happened in the world while you stayed with me: You won't remember the tornado outbreak of April 27th, but you will surely hear us reminisce about it as you get older and talk about how God saw it fit to spare all of us when the storms came through. The American economy continues to struggle - real estate is very cheap but nobody can afford it - and the country of Greece is teetering bankrupcty. Closer to home Jefferson County, where we and your mom and dad live, is also close to going bankrupt.

These were taken on our last "official" day together (and you can see why it's so hard to give this time with you up!):

Auntie Criddy sure is going to miss you, kid. Slow down on the growing up for me, okay?

Like a Duck

2011-07-13T21:29:00.006-05:00

Years ago when I was in college my sister sent me a card that had a duck on the front and said something like "In times of stress, be like a duck." The inside read "Stay calm on the surface but paddle like hell underwater!"

That's kind of where I am right now. I'm learning that I can remove myself from certain stresses but if I don't police myself, I will allow other stressors in. It's been tough to find time to update the blog so I'm going to cheat a bit here and remind you of some great posts in case you missed them.

While we're talking about stress: I have written about what motto got me through some of the toughest times.

If you haven't read the interviews I've done, please do. I hope to have time in the future to do more posts like these and am grateful for the individuals who took the time to share their experiences with me and my readers.

My interview with Mark, a man with Graves' Disease (who also loves racing!) is here.

My interview with Norah's mom is here - she's a neat little girl with lots of spunk who happens to have Graves'.

My interview with Mikayla and Elizabeth's mom can be found here, and her girls have been diagnosed with "inactive" Graves' Disease - read the post to find out more.

Also, don't forget to "like" the blog's facebook page here. I try to update several times a week with interesting links concerning health and Graves' Disease. I also put up a link to every new post in the facebook page, so it's the best way to know if there's something new to read here.

Thanks for reading along and bearing with me!

Weight Loss Challenge: Month 1 Down

2011-07-01T10:09:00.005-05:00

Month one of the weight loss challenge is down, and we've all made some good progress I think!

I'm definitely making healthier choices and so far I've lost 3lbs and gone down a size in the waist. I've been motivated to exercise more and watch my portions carefully. Since there is money at stake, I really want to win.

We've decided to modify the "rules" a bit and keep going into the fall in hopes our motivation will keep up.

Instead of paying out at this week's weigh in as originally planned, we've decided to keep the pot going until we stop the challenge so the money just gets bigger and bigger. Also, in an effort to punish ourselves for not losing weight, we've decided if you gain any weight you must contribute $2 per lb gained to the pot. So $1 per lb lost, $2 per lb gained, and the money doesn't pay out until the last weigh in sometime in the fall. Probably around the holidays, because who is really going to be dieting around Thanksgiving and Christmas?

My efforts to sabotage my fellow challengers have largely failed...I brought home sweets for Brian but that also meant I ate sweets, so that was a fail. I left a candy bar on Jason's desk at work with a note wrapped around it that said "Jason: EAT ME" but he didn't (grrr) and gave it to someone else. I try to talk about things like ice cream, fried food, and other terrible things around them. So far it hasn't been very successful...

No Publicity is Bad Publicity

2011-06-28T13:24:00.007-05:00

Thanks to rapper Missy Elliott making public her battle with Graves' Disease, the autoimmune disorder is getting lots of attention.

It has also meant she has had to correct some reports that she has been doing nothing during her battle. I think this is a good demonstration of how little is actually understood about this disease: yes, it is debilitating, but it doesn't always steal your ability to get things done. (I'd even argue that most who get this disease are Type A's and would push through the challenges before slowing down, which might be why it takes a long time for some of us to improve.)

Due to Elliott's recent interviews, MSN's homepage featured a search for Graves' Disease through their search provider Bing. While the recent media spotlight on Graves' has shown there is much the public has to learn about the disease, I think it has provided a great opportunity for them to do so. I am thankful for that!

Here's hoping the media accurately reports facts about Graves' Disease. My biggest pet peeve: there is no cure; the disease may go into remission. Let's educate and not confuse.

Dedicated to the One I Love

2011-06-24T09:04:00.007-05:00

Today my husband and I are celebrating 5 years of marriage and 10 years of being a couple. Once I got over the fact that I am old enough to have been with someone a decade, I realized how grateful I am to have such a wonderful man to share this journey with. I'm a firm believer that we should honor good men, especially when our culture devalues them so much, and that is why I am sharing this with you: because I've got a pretty stellar husband.
Every time I've been burdened, whether by my choosing or not, you have helped me carry my load. At times I have been unable to carry any of it and you continued for both of us. You constantly remind me in troubled times to worry about nothing and pray about everything.

When I was diagnosed with a disease that would change my life in ways I would never grant it permission to, you held my hand and let me know that it would be okay. You did everything on the days I could do nothing, and some days when I could do something you still did it all.

There were times when I was ready to give up, but protecting you from the devastation of loss was what kept me going. To that end you saved my life. Every time I have shown you my most intimate self, scared you would turn away in disbelief, you held me and comforted me. Even when I was not myself, you stood beside me and held onto hope when I could not.
You have always let me be me and embraced who I am. Anything I wanted to pursue, you fully supported. Your belief in me taught me that positivity accomplishes much more than negativity or reverse-psychology ever will. You made me believe I can (and will) achieve anything. I believe you can achieve anything too.

You make me laugh at unexpected times, smile even when you probably shouldn't, and when I take life too seriously you remind me the value of being laid back. Your cheerful disposition and light hearted outlook have been qualities I don't possess myself but desperately need.

Each year that passes we become more intertwined. I sense us becoming more singular and less a pair, and I love that. Our goals are shared, our vision is the same, and we know it will take both of us to achieve them. It's not good enough to work as two complimentary units; we must work as a single unit, and we made some big steps the past year in doing that. It's awesome that instead of my career or your career, it's our future. Because we have to share it.You are my best friend, my lover, my protector, my provider, my leader, my partner, and so many things that I cannot imagine my life without. I am grateful to have you stand beside me (and in front of me when needed) for as long as God grants us life.

Happy Anniversary, babe. I love you.

My Chemical Romance

2011-06-21T09:36:00.012-05:00

By now if you've been reading, you know that I am a recovering germophobe. I won't sit on public toilets, have used bleach religiously to clean, and like to use antibacterial soap to wash my hands (more on those antibacterial soaps in another post).

I love those antibacterial cleaning wipes the big cleaners put out. I'm pretty sure I've paid someone's retirement at one of those companies because I go through so many of their wipes spot cleaning. Being a germophobe living with cats will do that. Maybe I shouldn't be as concerned with them because they are "bleach-free," but what's all this other stuff in there?I'm getting better. Slowly but surely, I'm coming to the realization that if there are this many warnings on a bottle it can't be good.
Perhaps I shouldn't have bought a huge, economy size of bleach-based cleaner at the bulk store. But I did. And while I've still used it every time we have moved because I have to clean any new place top to bottom (I mean, who knows how the last people who were here lived???), I try not to use it regularly. This also means the huge bottle I have might last me the rest of my life and take up cabinet space I don't have. Anyone else out there have this problem with buying in bulk? What was I thinking?!The pre-Graves me bought into the idea that germs are bad and nothing would clean as well as harsh chemicals. To some extent that might be true, but now I understand that some germs are good to allow your immune system to practice fighting off things. I am also embracing the fact that if I have to come into extended contact with it, natural is better.

Chemical cleaners, like antibiotics, can't discriminate against "good" and "bad" germs. They just kill them all.

Even those bleach-free cleaning wipes I love so much have this warning:I'm pretty sure there's no "maybe" as to whether my kitchen counter will come in contact with food or not. It will.

Back to bleach-based cleaners. See this warning here?

Yeah, well, I never used gloves. The fact that my hands smelled like bleach for days afterwards is probably a good indicator I should have been. Those are on my shopping list.

Did effectively soaking my hands in bleach on a regular basis have anything to do with my developing Graves'? As with many other factors I've written on, while I don't think it's solely to blame, I believe it did play a role.

I won't go as far to say I'll never use bleach again. But unlike in the past, I will use it sparingly and be careful when I do. I'm researching the idea that maybe, if we can get over the mental stronghold that antibacterial is better, we don't need harsh cleaners to have a healthy home.

Now I'm on the hunt for a good, natural cleaner. One that won't be detrimental if it seeps through my skin and gets into my system. If you've got any suggestions, head over to the blog's facebook page and share - I'm not even sure where to begin!

Pesticide Offenders

2011-06-16T09:08:00.008-05:00

An article on MSN yesterday listed the "Dirty Dozen" of unsafe produce.

You may remember in this post I talked about pesticides in our fresh foods and how many people (myself included) recommend buying organic if you're going to eat the skin of a vegetable. The MSN article provides a good guideline of what to buy organic if (like me) you can't afford to buy all organic produce.Surprisingly on their "safe" list in this article: onions. I happened to have some sweet vidalias on hand and took a pic.

Weight Loss Challenge

2011-06-08T08:48:00.007-05:00

In December my doctor told me, like he does every year, to lose 15lbs before I see him again. I usually decide around November, a month before I go back and right during the holidays, to take him seriously. As you can imagine I never have much success.

So far I wasn't making a real effort to lose poundage and although I'm walking regularly for exercise, I wasn't changing my habits all that much. I don't get on the scale because it's just a discouragement so I was surprised that I'd already lost about 4lbs this year.
However, recent developments with my mother-in-love made me realize that my husband needed to get control over his health given his family history of heart disease. His father had two heart attack episodes in his 50s (one unfortunately taking his life) and his mother is now dealing with blockage issues at a young age herself.

This weight loss battle suddenly wasn't about me any longer; it was about both of us. And I knew that the only way either of us would get better was if we both went full on committed. Due to that realization, a weight loss challenge was born.

Last week the two of us and one of our friends decided to do a month-long challenge.
We weighed in for the first time last week and will weigh in again today. I made this nice spreadsheet up for us to record our losses.

Upon the suggestion of a friend, these are the terms:I know, it's pretty naive to go up against two men when I know they have faster metabolisms than women. But have I told you how competitive I am? I want their money. And I intend to get it.

Lingering Devastation

2011-06-01T11:24:00.003-05:00

In case you might have thought Alabama's recovery from the April 27th tornadoes was not news anymore, these were taken this past Saturday. One month after the tornadoes, Pratt City is still a scene of complete devastation.
This was the floor of a fully operational gas station.

This was the sign that welcomed customers in front of that gas station.

This is the neighborhood behind that gas station.

This is someone's kitchen, now open to the elements.

This is a neighborhood, full of what were homes, now all but levelled.

Recovery continues. To help, here is a good listing of what organizations are working in the devastated areas.

Please continue to remember Alabama in your prayers.

Riding into the Sunset

2011-05-26T12:08:00.003-05:00

An article Google Alerts delivered to my inbox today tells of a courageous woman who is undertaking a 3,000 mile bike ride to raise awareness for Graves' Disease. She's calling it "Greater than Graves."

Monies donated will benefit the Graves' Disease and Thyroid Foundation, and you can learn more on a website set up for the ride here.

I particularly love the logo - the familiar green butterfly from The Graves' Disease Foundation has been fashioned into wings for the bike rider. I love the symbolism in that. Oppressing thyroid turns into freedom of flight.

Godspeed, Michaela!

Lurking in the Pantry

2011-05-23T07:54:00.008-05:00

Processed food is an amazing thing: it's tasty, cheap, and available. It's been so convenient we've trusted it's safe for us simply because it's on the grocery store shelves. I mean, someone is checking that stuff, right?

But an episode of The Doctors reminded me why I've been making a conscious effort to eat less of these processed foods. On this particular day's show they detailed benzoyl peroxide being used to whiten bread (yes, that's the stuff you put on your pimples), a chemical put in salad dressings that is also found in antifreeze and de-icers (anti-freeze will kill small animals, just so you know), and some chips containing a carcinogen (they compared them to cigarettes).

Whoa.

For me, it's not really about the hidden sugars or other fattening secrets my food might be hiding. It's about the color, preservatives, or other hidden extra chemicals I'm putting in my body. Don't get me wrong - we should all be watching our weight too - but I've sworn off artificial sweeteners in any form and am making more efforts to avoid foods developed by a scientist instead of nature.My husband thinks I'm overdoing it a little bit. And maybe a little bit of chemical isn't much to worry about. But think about the amount of these chemicals you would consume in a lifetime eating them on a regular basis. That, in my opinion, is cause for concern. And if the husband wants to call me "granola" for it, touche.

In my best hypothesis of my development of Graves' Disease, a cocktail of several internal and environmental factors caused it to trigger. Knowing that any biological children the Lord blesses us with will likely have a heightened chance of having an auto-immune disorder, anything I can do proactively to remove these things from my environment (and eventually theirs) gives me the upper hand in battling its development. At the very least, I hope these changes will allow me to choke out my Graves' and reduce the severity of any of our bio children's potential immunological malfunctions.

Still following me? Hang on while I get back down to earth.

Reading what biological matter the FDA allows in our food is disgusting, and those close to me will tell you I am the worst kind of germaphobe. But I would rather consume a bit of natural matter than even the "safest" lab-born chemicals, and if that means I get some extra protein, so be it.

To that end I am beginning to discriminate even on my fresh produce, considering insecticides and pesticides are used many times on fruits and vegetables. The aforementioned episode of The Doctors suggested not being as concerned about plants with thicker skins that you wouldn't eat (avocados, bananas), but purchasing organic when you would consume the skin or if the skin was thin (potatoes, carrots).

In order to cut down on anything with 'bleach,' I'm buying unbleached or unrefined so I can get it closer to it's natural form. Not refined, bleached, destroyed, rebuilt and enriched.

Yes, it bakes up a little different than the normal white flour. And sure, it doesn't dissolve quite as readily as table sugar. And while I may never dare to mess with my grandmother's candy recipe, on a daily basis I will choose these.

Want more food for thought? Here's a great article on hidden ingredients in seemingly innocent foods.

Begging Your Forgiveness

2011-05-20T11:39:00.006-05:00

In light of my mother in law's surprise hospital stay at the beginning of the week (she's at home and doing great now), helping my sister out with her new daughter as she goes back to work, and our internet service being spotty (they're working in the tornado-ravaged neighborhood around us), I haven't gotten around to rewriting the food post blogger lost.

I'm hoping to get it done this weekend (bar anything exciting happening - I'm praying it doesn't!) and have it up Monday.

Would a picture of my niece smiling in her sleep help you feel better about this?

Hey, it was worth a shot. I mean the mohawk forgives all, right?

Hoping your weekend is great,

(Thankfully) Rare

2011-05-17T08:21:00.007-05:00

File this under (thankfully) rare occurrences: Sisters have surgery on the same day in the same hospital.My mother-in-love and her sister, dressing alike again after all these years.

Thank you for all the well wishes for her on the blog's facebook page; it looks like I was able to recover some of the food post blogger dumped last week and will be able to get that up soon. Thanks for bearing with me.

Happy Tuesday!

Grrreat.

2011-05-13T13:50:00.002-05:00

Yesterday I completed on a post on chemicals in our food. I worked on it piece by piece throughout the day and when I finally was ready to hit "publish," I got an error message from blogger.

Blogger has been down every since and now that I'm finally able to log in and see what I've still got, I have discovered that it lost that entire post. Every bit of it.

I'm super peeved, but have learned my lesson and will now save each post on my computer before hitting publish. Please bear with me as I allow myself the weekend to rewrite said post.

Thanks.

Plastic Aversion

2011-05-10T09:00:00.000-05:00

After growing public concern over the possible safety hazards of BPA in plastics, the FDA finally issued an advisory early last year. This article confirmed what many were afraid of: plastics might not be safe.

BPA, or Bisphenol A, has been found to be a possible endocrine disruptor. Let me emphasize that: an ENDOCRINE DISRUPTOR. (Anyone out there seeing an endocrinologist?) Among other dangers, polycarbonate plastic could be disrupting your endocrine system. As if that weren't incriminating enough, there are studies correlating it with thyroid function.

The FDA's advice was to refrain from heating #7 plastics, known to contain BPA. Which is great, when you're not using them for hot liquids like coffee...

At this time I was carrying coffee in a plastic reusable travel mug to work with me every morning. I checked my favorite coffee tumbler and it had the number 7 on the bottom. I continued to check and every. single. one. of my travel coffee mugs were number 7s. Not only was I washing them in a hot dishwasher, I was pouring hot liquid in them, and stirring them with metal spoons - inevitably causing scratches in the plastic, another thing the FDA was advising against. I was also, on occasion, microwaving these containers to heat up my coffee.

This realization came 6-8 months after my diagnosis of Graves' Disease, over a year after I had begun exhibiting symptoms. I believe this was (yet another) factor that might have helped kick it into high gear.

I invested in a food-grade steel insulated mug right away and decided I would swear off plastics. (Which has been much more successful than my swearing off coffee!)Then last year, these little ceramic cups with silicon lids showed up on the market. I purchased a few of these and use them as my travel mugs. They don't keep my coffee warm quite as long as the plastic did, but I don't have to worry about any chemicals leeching into my beverage and for the peace of mind it's well worth the sacrifice.

Now I stay away from plastic of any kind as much as I can help it, and I don't have any #7s in my kitchen. None at all. I run everything through the dishwasher so if the FDA says I don't need to heat it, I can't use it. I will spend a little more or go out of my way to avoid any type of plastic container, even if it is 'safe.' I mean, I know my tupperware stays stained from food stuffs, so why wouldn't the opposite be true and my food be tainted with plastic stuffs?

There has been well-covered concern over BPA in plastics for over two years, as you can see in this article, a full two years before the FDA perked up to concerns. The reality is it's almost impossible to stop the exposure to BPA - it's found in much of our food packaging - but you can limit it significantly. This article provides good guidelines to help you do that (interestingly, the article is again from 2008).

Let me emphasize again that while I believe the use - perhaps overuse - of plastic coffee tumblers contributed to my highly symptomatic bout with Graves' Disease, I do not believe it was the only factor. However, if I could have reduced exposure to this and other suspect substances, I believe it may have bought me more time before or lessened the severity of it's appearance.

While the plastic issue may not concern our food specifically, it is clear that our food containers could leach chemicals from their constitution into our food. This is reason enough for me to steer clear.

Healing Continues

2011-05-09T14:18:00.003-05:00

Alabama seems to be returning to normal...for some, that means we run the risk of forgetting what happened so recently and for others it means creating a new normal for themselves after losing everything.

Officials are asking for patience as the state cleans up and puts itself back together.

Some of the more heartbreaking stories are of pets still standing guard over the areas their houses once stood and hoping their owners will return.

Prayers continue to be appreciated. The website for the Birmingham News, Huntsville Times, and Mobile Press-Register (http://www.al.com/) is a great resource for the ongoing post-tornado stories.

Tomorrow I'll get back to the normal topics and begin a series on what we ingest in our food and why I believe it's one of several factors contributing to the development of health issues like Graves' Disease.

Alabama Recovering

2011-05-02T08:18:00.020-05:00

This has been one more year for weather in Alabama...we've had snow so many times I've lost count and now tornadoes that tore through much of our central and northern parts of the state.

I have never experienced anything like what happened on Wednesday the 27th, and I pray I never do again. Our power was knocked out Wednesday morning and we rode out the afternoon storms blind, only able to listen via radio as the terrifying events unfolded.

That day was the first and only time I have ever heard the weather agencies issue a "Tornado Emergency" instead of a warning. At one point both the National Weather Service in Huntsville and Birmingham had to defer to Atlanta and Mobile, respectively, so meteorologists there could take cover.

We finally realized the magnitude of what had happened on Friday when we got power back and could watch the news coverage.

Here are some pictures I took of the damage just a few blocks from our home; thankfully houses weren't levelled but it looks like the woods took over the neighborhood.
This is a picture of a small plane flying an insurance banner: I imagine the company thought this was the best way to get in touch with their policy holders to file claims since everyone was out of power and phone service was spotty.

The last picture I enlarged the sign so you could see it reads "FREE WATER & ICE" - just one example of business in the community providing support where they can. Many restaurants were grilling food that they were going to lose anyway and giving it away for free.

We lived in Tuscaloosa for three years prior to moving back to Birmingham this past summer, and I can't help but cry when I see what happened there. As the tornado was coming through one of our local meteorologists, James Spann, was advising people to get underground if at all possible. Now it simply looks like a war zone.

My father lives in Cullman and their schools have been shut down indefinitely - meaning they have no idea when they'll be able to open back up - and a dusk to dawn curfew was imposed at one point. They, like Tuscaloosa, have military patrolling their communities.

Some areas, like Hackleburg, were unable to be reached until days later, and the sight of living people was proof miracles still happen.

From this point on, the smell of pine will no longer just remind of me of Christmas - it will remind me of the April 27th, 2011 tornadoes because of the scent of fresh-cut trees in the air. Trees that were not brought into homes to decorate, but instead forced their way in on the winds of the tornadoes.

Likewise, Xs and symbols spray painted on homes will no longer only remind me of what my NOLA family went through in Katrina: it will also remind me what my neighbors went through in April 2011.

Storm reports for north and central Alabama are impossible to fathom and still growing.

The tornadoes were devastating. But we will rebuild and begin anew. We are Alabama.

And in some better news, we can't hunt down the tornadoes and make them pay for what they've done, but we can hunt down terrorists.

May God keep you and yours today and always.

Devastated Alabama

2011-04-29T17:06:00.003-05:00

I am putting up a quick post while our power is on - it wasn't supposed to be on until midweek or later but is amazingly on right now. Not sure how long we'll have it.

A large part of Alabama is in ruins from Wednesday's tornadoes. One hit two blocks from our home, but we were mercifully spared. In some areas it looks like the woods tried to overtake the houses and cars, in others there is only mangled lumber left of people's homes.

Please pray for our state as we rise from this and collect what's left of our belongings and loved ones. Many are still searching for relatives and hoping to recover bodies. It is devastating, but in all things there is hope.

Thank you for your thoughts and prayers.

Beauty: Redefined

2011-04-25T08:18:00.009-05:00

Last night, my family and I had an enlightening conversation around the Easter table. My father had seen a television show where a person who is known as The Ugliest Woman in the World - a moniker given to her by others, mind you - and was amazed by the young woman's spirit. I sat back and listened as the discussion centered around how everyone felt if they were that "hideous," they would certainly just hole themselves up and not want to be seen.

Darn right, you would.

For those who have never had a disease that affects your appearance so drastically, it's as if the one thing that represents you in life has been stomped and altered until the thing you hope will draw people to you seems to scare them away. They gawk. They appear confused. At some point you give up even attempting makeup or other appearance-enhancing tasks because what is happening can't be helped. And quite frankly, doing hair or makeup would require you to stare this beast you have become in the face for extended periods of time, and you're just not comfortable with that. You learn the less you look in mirrors and try to forget how you look the easier it is to deal with. So that's exactly what you do.

Your appearance is your impression. I'm just as guilty as the next guy - most of the time I know faces instead of names and am notorious for greeting with "Hey girl!" instead of a name. But the essence of a person isn't in the visible, and during my journey with Graves' I have learned more about that than I could have in a lifetime without it.I had no idea my body could change so much in the span of 12 months. Between enhanced sun sensitivity from the Atenolol, bloating from the Prednisone, and my bulging eye, I was pretty sure I looked like some kind of flaming blow fish. I suppose at least I was threatening enough no one would mess with me. I was repulsive to myself, therefore sure I was offending to my husband, and working a job where I had to interact with many people on a daily basis face-to-face was no help. Eventually I figured out that as long as I pretended there was nothing unusual about my appearance, those I interacted with would too.

I had my game face. Then I had my home face, where I was miserable and depressed and scared I would look like this the rest of my life. (Praise God, in His merciful grace, He returned my face mostly to "normal.")

During that time I learned that who I am is not my appearance. This outer shell is not me. It might be the first thing people see, and it might be the first thing they remember, but it's not me. I am made up of things unseen: experiences I've had, wisdom I've collected, other souls who have shaped me, art that speaks to my inner being, and a desire to share Hope with the world around me. You can stare at me all you want, but you will never deduce any of that from what you see.

In hindsight, while I was so busy avoiding cameras of any kind during that time, I wish I had professional photos taken of me and my bulging eye. On some level that intimacy, that invitation to gawk and see clearly what you're afraid to look at too long, would have taken the power away from it. Something about sharing a sight that odd would've brought out the profound beauty, I believe. Then I could have learned to own it.

We live in a culture that defines our worth by our appearance, so going through something that deteriorated mine so badly was an exercise in perseverance. I overcame it. I'm not sure I could say that if it had've been permanent, but I am thankful if I have to walk that valley again it will not be unfamiliar.

Beauty can be redefined. It is for me. And this tiny woman, who has more spunk and personality than I could have ever mustered in her situation, is beautifully inspirational.

The Little Blog That Could

2011-04-22T09:00:00.003-05:00

If you're a fan of the blog's facebook page (and if you're not, please "like" it!), you may have seen yesterday afternoon that I posted about a big announcement concerning the blog. The time has come to share something very exciting with you!

First, let me recap: this blog began as a way to share my journey with Graves' Disease. It has evolved since then and has become a platform to share about other aspects of my life, information about health in general I have found beneficial, and even on occasion share others' journey with Graves' Disease. It has given me fulfillment to make a difference in awareness and understanding for this disease and those who live with it every day.

Some months ago, when I was able to begin dedicating more time to this blog, I applied for BlogHer. I was familiar with the publishing network from other blogs I had kept up with and was very pleased with how their advertising is, both in appearance and taste. I also knew that as a part of this community bloggers were able to exercise some control over what ads were run on their sites, and that appealed to me very greatly.

I received news earlier this week that I had been accepted into the BlogHer Community, and if you look to the right-hand sidebar you can see their presence already. I am honored and excited to be a part of this network!

I hope that those of you who have stumbled by, been reading along, or occasionally browsed will continue with me on the next phase of this blog's journey.

My first and foremost goal has always been and will continue to be sharing with others who are in the throws of Graves' or other desperate situations that there is hope.

Let me reiterate: There Is Hope. In all things, there is hope. I pray this blog always communicates that.

I am excited about this new development and hope that it will serve to bring about greater awareness of Graves' Disease and healthier living in general. And most of all spread hope.

That said, there's the new addition over on the right. Let's get back to blogging!

Have a great weekend.

Easter On It's Way

2011-04-20T11:03:00.005-05:00

For the first time since my Graves' diagnosis, I've been able to really decorate for the holidays this year. It brings me joy to put out a little something special to brighten up our apartment.

This was stored for a good 2-3 years before now, and I finally broke it out a few weeks ago.Despite the normal springtime storms here in the south, I am reminded that this time of year brings renewal and rebirth.

Even though I didn't go all out for Easter like I did for Christmas, having some decorations to display makes me stop and appreciate the moment more.

Welcome Spring!

Tax Day

2011-04-18T11:54:00.003-05:00

Tax Day is here!

Due to the Emancipation Day holiday in D.C., taxes are due today, the 18th, instead of Friday the 15th.

Here are some good tips for last minute filers. And, if you're like me, you had medical deductions-a-plenty, so it might benefit you to file an extension rather than miss those.

Happy Monday!

Graves' Gets More Pub

2011-04-15T11:17:00.002-05:00

Last night one of my dear cousins texted me that Style Network's show Clean House gave all proceeds from one of their episodes to a Graves' Disease Charity.

Here is what I could find out on the subject; I'm hoping to find the episode and watch online! If so I'll update this post with a link.

Troubled Legs

2011-04-11T12:31:00.013-05:00

As one of the lucky folks who got the associated thyroid eye disease with their Graves', I was hoping I could count myself out of the ones who get pretibial myxedema. However, these discolored knots on my lower legs say otherwise... I have heard thyroid dermopathy seems to attack old scar tissue, and these are old bug bites that healed but never lost their discoloration and are still raised some two years after getting bit. They itch sometimes but, despite their appearance, don't hurt at all and aren't tender.I am putting much hope in a new endocrinologist, and I will certainly show them my legs when I go in July to see if it might be related to my thyroid.

The more I learn the more I find out there aren't many things with this old body that aren't.

This information says "Most patients who develop PTM also have Graves ophthalmopathy, with the onset of dermopathy typically following the onset of ophthalmopathy by 6-12 months."Most of the research I've done on this associated condition say the onset is 1 to 2 years after diagnosis, which would be pretty accurate in my case. I've had some weird puffiness on the lower part of my legs too, but I've done my best not to read into it too much.

Time to invest in some footless tights for spring.

You may remember in an interview I did with Mark O'Brien his pretibial myxedema began attacking old scar tissue on his leg.

Perhaps it's the beginnings of said skin condition? I guess we'll have to wait and see.

Paper or Plastic?

2011-04-06T10:18:00.004-05:00

A few months ago we heard a rustling coming from the kitchen. It continued for a few minutes, so when we went to investigate we found this in our "bag cabinet."Molly loves to find dark places to hide (which makes it really hard to find her being that she's black) which have soft surfaces. She keeps a bed in the linen closet on top of our folded bedclothes (grrr), under the bathroom sink on top of some towels (double grrr), and now she has deemed our plastic bag collection to be comfortable.Mr. Mustard is much less interested in finding dark cubbies to hide in and much more interested in being in the middle of things. Mr. Mustard is also terrified of storms. When we had some pass through Monday night he hid in the laundry room.

Ahhh, life with cats. Some days I'm convinced we need another one, other days I'm thankful we only have two.

Imitator

2011-03-30T12:28:00.007-05:00

One of the biggest problems with thyroid disease is that it mimics so many other diseases.

It's easy to think thyroid disease symptoms are something else: a hypOthyroid person might be diagnosed with depression, for example, or a hypERthyroid person may attribute their health issues to stress.

I came cross this questionnaire on a women's website that is helpful to determine if what you're experiencing could be a thyroid issue. It's puts me off a little that they give you the overall results after each question, but I thought it might be a good starting point for some.

Hope you're having a great week! We're halfway there.

I Want to Be Well (An Ode to Graves' Disease)

2011-03-25T08:30:00.001-05:00

I don't want you to keep me from doing anything but sometimes it feels like you're preventing me from doing everything.

I don't want to let you define me but when you steal so many of my days, it's hard not to.

I want to be well but it's so hard to tell - you sneak up when I least expect it and dictate my world.

I want to have courage when I face you, but when you are felt and not seen, it's hard to show you I'm in control.

And am I, really? I have not yet learned how to keep you within boundaries, how to manage your effects, how to make you behave.

I want to be like He-Man and She-Ra and look you in the face and yell "I HAVE THE POWER!"

I want to fight you to the death, put my sword in your chest, then plant my foot on your carcass as I declare you conquered. A surrender is not enough for me; your ceasing to exist is what I'm after.

Then I could proudly reclaim all the territory you've stolen, the populace you've abused, and the land you've laid waste. I would recover my body and delight in its restoration to new. To normal.

But I won't. Because I can't. And the knowledge that I never will scares me.

Like baggage I must carry to every destination of my life, you will go with me.

Even if you're not the death of me, I will take you to my grave.

Because that's the nature of you. You show up uninvited and you don't go away.

But unlike me, you will stay in the grave.

A Little Better All The Time

2011-03-22T09:00:00.001-05:00

If you follow on the blog's facebook page you know I broke down and went to the doctor on Friday. I thought the sore throat was bad, but when I let it go so long my ears started hurting I knew I better let a professional advise me.

After them chastising me for playing around with an auto-immune disorder and illness, they did a strep test - which was negative, thankfully - and sent me home with these:Also, the nurse asked me if I drank coffee. I was too scared to ask her why because if they tell me it's bad I'm in big, big trouble. I told her I did drink coffee. Yes, yes, probably too much of it. Then I changed the subject very quickly. I dare not tell her that after trying to part ways when I was hypERthyroid I went running back once I went hypO. Next topic!!!

When I have been prescribed antibiotics I always try to take a pro-biotic to avoid C. diff. This is a nasty thing I don't want to mess around with and therefore do not take chances in this Graves' altered life I lead. The Z-Pack does not discriminate against good and bad, therefore I must boost the good.Most pro-biotics recommend taking them twice daily, but I consider it an accomplishment when I remember to take them at all. Once is better than none, right? Also, eating yogurt would probably be a good recommendation when you're on a course of antibiotics. It has lots of good, live cultures that help in all sorts of ways.

I have noticed since being sick my affected eye seems to have flared up a bit. I asked Brian to look at it and he says it does look like it has worsened a bit to him as well. So here is a picture from yesterday to note the change:I'm not sure why, but when I auto-adjusted this pic it made my eyes look green. Also there is a piece of my hair which will not mind the flat iron and I'm resisting taking the scissors to it.

And here are my eyes again, closer up (and in accurate color) so you can zero in on the difference:I'm keeping an eye on this (pun intended!) because I also just recently went off birth control, so I'm thinking there may be a correlation there (if not with this sickness I'm battling). If it doesn't improve when I get over this it may warrant looking into the possibility of the removal of that hormone affecting how my body is tolerating thyroid hormone.

There's a good chance that was too much information for some, but this is a health blog and I'm all about the knowing so we can all learn more about Graves' Disease. And perhaps someone out there had theirs flare up when they went off the pill. So, um...yeah.

Happy trails!

Immune Status: Compromised

2011-03-16T10:39:00.009-05:00

Well, I've managed to pick up something somewhere and get sick again. Story of my life. It seems like I'm always getting sick, even before I had Graves' Disease, and I suspect it's the compromised immune system.

I have a sore throat and headache and feel like this:
I always struggle with myself on whether or not to go to the doctor. In a perfect world where I do not have Graves', I would let my body fight it off. These seasonal colds must be a good work out for them, right? And I'm in the group that believes doctors over-prescribe antibiotics. So in my ideal situation I would let it run its course and give my immune system a big pat on the back.

But in this real world where I do have Graves' Disease and my immune system is "compromised," I wonder if my body can fight it off as it should. Do I ride it out or go to the doc?

So far, I'm trying to do as I did the last time I was sick around New Year's and treat it at home. That time it took around 2 weeks for whatever it was to get out of my system and start feeling better.

I'd be lying if I didn't say forking out money for the doctor wasn't also a factor...

So right now I'm getting as much Vitamin C as I can pump in my body, taking over the counter cold/flu meds, and resting as much as possible.
This time I'm really bummed, though, because I can't see my niece until I get well...so riding it out seems a little tougher.

I'm going to give it another day or so and if I haven't improved, I'll probably break down and go to the doc. Especially since it's the second time being sick in 3 months and I didn't go see anyone the first time. Aaaaaand I want to know if and when it will be safe to get around that sweet baby again.

If you have an autoimmune disorder, what's your policy on getting sick and going to the doctor? What factors do you consider?

Absent Due to Cuteness

2011-03-14T11:55:00.006-05:00

So, I've been rather absent the past week or so due to two very important things.

Brian and I have been spending time with our "new" little girl:

Me and our new niece Layla. Best thing my sister ever did!

And we also took a trip to go see our "first" little girl: Brian and our godchild Gabriel. Best thing my cousin ever did!

Since we can't get these days back, I chose to relish our time in their company instead of worrying about the blog.

There isn't much in life more sweet than these two girls.

Things will be back to normal this week. Thanks for your patience!

Layla's Arrival

2011-03-02T11:49:00.006-06:00

On Monday, February 28th, I had the privilege of witnessing my niece take her first breaths. She made her entrance at 2:55p.m.

She weighed 6lbs1oz and is 19 1/4in long. She has a head full of thick, blonde hair and is one of the most beautiful things I've laid eyes on. Severe weather was rampant in the state, and as she made her entrance a heavy storm rolled up and it lasted just a few minutes before the sunshine came out again. We will tell her she rode in on the wind.

I will never forget those few moments after she was out as silence filled the room while everyone waited for the glorious sound of her cry - and the rest of us joining her in tears as we heard her voice for the first time. I am so proud of my sister and brother in love. They are going to be wonderful parents and I am honored to have been able to be in the room when this tiny gift arrived!

Welcome to the world, sweet little Layla! You are so loved. This auntie is smitten with you, as is the rest of the family.

I prayed for this child, and the LORD has granted me what I asked of him. 1 Samuel 1:27

Hairy Situation

2011-02-22T14:52:00.007-06:00

I have a couple of new favorites things I've been using on my hair. In the constant battle to keep in moisturized and decent, in the last few weeks I've introduced some important things to my regimen and tried to say goodbye to my "crazy hair."

The first is a flat iron. God bless whoever came up with this thing. It makes your hair look glorious, even after being slept on, and I just love it. I use a glosser to protect my hair from the heat styling and use the lowest heat setting (310 degrees) so it doesn't cook my locks.

Note: the glosser makes the flat iron smoke and the first time I did it I was convinced I was going to set my head on fire, but it turns out that's just part of the process. I was so scared I prayed the entire time that I wouldn't fry my head. I survived.
The other thing I have been using is coconut oil. A dear friend suggested this to me and it has been the best thing so far to get moisture in my hair. I use it just like I was using the glosser - comb it through wet hair, wrap hair, and wash out the next day - and it works way better in my opinion. It's not as greasy and I feel like my hair soaked it up much better than the glosser (which just sort of sat on top of my hair).

I am in love with this stuff! It also works great as a skin moisturizer so after I put it through my hair, even my hands feel better.

Another important thing I've been doing is not washing my hair as often as I can help it - every other day or sometimes every three. Since I've been flat ironing it has been much easier to avoid "bed head" so I have been able to avoid the moisture-zapping practice of washing my hair every day.

Finally, as part of my overall effort to avoid things that are created in a lab and/or contain chemicals, I have sworn off any hair color containing ammonia. This means no permanent hair color, and since the 30-wash color usually lasts about a month, washing my hair less has come in handy here too. The temporary colors are much gentler on my hair and I'm not exposing myself to 20 minutes worth of harsh chemicals.

I'm claiming success in taming the dry hair beast!

Ode to Artificial Sweetener

2011-02-15T12:18:00.003-06:00

I find you in so many things that I think are good.

I kept on consuming you even when I knew I never should.

Aspartame, sucralose, saccharin, and more...

I tried to keep you socially and drive you out my door.

Now that I realize how much you trigger how I feel,

No longer will I have Diet Coke while out for a meal.

From here on out I'll go all the way and have a regular Coke or just water.

It's so clear now that when I felt bad you were the problem starter!

I'm tired of headaches, being weighed down, and feeling rather yucky.

Artificial sweetener, I think you're pretty sucky!

So we're done.

Snow Day

2011-02-10T12:26:00.004-06:00

Lord, thank you for the snow day.

It is light and fluffy.Beautiful and serene. It restores the wonder of a child. And you also sent it with no travel problems.

For that, we are truly grateful!

Thank you, Lord, for the snow.

(Word is this could be winter's last "hurrah" before Spring - those of us in the Deep South sure hope so!)

Why I Nuked My Thyroid (and why I'm still sure it was the right decision)

2011-02-07T22:30:00.016-06:00

During life we make many choices. Some are as mundane as what to have for lunch or what to wear on a particular day; others such as career moves and where we live will affect our lives forever.

In May of 2009 my husband and I were faced with the decision of how to treat a life-altering disease. It was not an easy one. I was advised to make it within a week long period. Afterwards I second guessed myself at times, even after following through, and (as peace and confirmation sometimes do) it took time to realize we did indeed make the right decision.

Individuals with Graves' Disease are (currently) given three treatment options:

Antithyroid Drugs

Radioactive Iodine

Thyroidectomy (surgery)

We chose door number 2. In the following paragraphs I will explain why we chose RAI. I am not advocating this option above others (as I think you'll see), I am simply explaining some of the circumstances surrounding my decision to undergo RAI and why it was the right decision for me.

By the time I was diagnosed with Graves' Disease I was highly symptomatic: fluttering heart, loss of muscle strength, heaviness in chest/trouble breathing, anxious, and I had an eye bulging. Something had to be done in a hurry. My endocrinologists' suggestion was to bypass meds because I needed to remedy my condition quickly. I was also aware that medications brought with it special challenges to my already-challenged immune system (the possibility of a drop in white blood cell count), and we decided it was not worth the risk as my job as a radio journalist required me to share microphones and such with others and be around a lot of people while I was out covering things. Medication was quickly dismissed as an option.

My thyroid had to go.With this decision to medically induce hypOthyroidism (instead of attempting to regulate my thyroid), we were faced with either RAI or surgery.

While I wasn't keen on going under the knife, a thyroidectomy sounded like a good option since other Graves' Disease sufferers had reported feeling better as soon as they woke up from surgery. There were a few things that were unappealing in my situation: from my understanding we'd have to regulate with antithyroid meds first which meant waiting longer, and being out of work for a full week when the surgery was performed. But the deal breaker was the risk of vocal injury. I was working in radio. My livelihood was my voice. Any risk of maiming my vocal chords meant the possibility of losing my money maker. At the very least it was likely I would be hoarse for a few weeks, possibly more. I just couldn't afford that kind of time off of work at a time when I desperately needed my job security. How in the world could I work in RADIO with no voice?! As much as I wanted a thyroidectomy to be an option, in simply wasn't.

This left us with the radioactive iodine. I wasn't comfortable with exposing myself to radiation and the possible risks associated, but when each option was weighed with the pros and cons, RAI had the least in my situation. I hated the idea of isolation. I was terrified that I would be putting something in my body that has been known to produce biological mutations. It meant we couldn't even think about pregnancy for a year. People would say "It's so scary!"But I knew it was scarier to lose my income and benefits when I needed it most. I knew it would probably aggravate my thyroid eye disease (and it did). Walking around with a dead organ in my body wasn't very appealing either. I didn't like this option one bit, but I suppose the only option I would've gotten behind was never even having Graves' Disease. (No dice on that one.)

So we made the decision I would undergo RAI and pray it only took one dose. And you know what? It was scary, difficult, and frustrating - but it wasn't that bad. Knowing that I had begun the journey of treatment was a reassurance that I would, one day, be better. Not like I was pre-Graves, but better than I was doing in the throws of the disease. There was hope.

There were a few weeks as my thyroid was dying where my hormone level had evened out and I felt like a million bucks. Those few days of miserable isolation were totally worth those few weeks of feeling spectacular. Although it has been a bit of a roller coaster ride getting back to "normal" (whatever that is), my worst days now are better than my best days were then.

The correct choice for you is one you take time to make with guidance from your doctor and support from your family. If broadcasting were not my profession, I would have chosen to have a thyroidectomy, especially with my eye already bulging. But because of my career my voice was just too valuable to risk. For some this will not be a factor - and they may or may not choose the same path to treatment we did - and they may even decide to try a natural approach. And that's great! There is no magic bullet for Graves' Disease. You must weigh the pros and cons of each and decide in your situation what is right for you.

As I was telling the doctor who diagnosed my thyroid problem how me and my endo had been treating the Graves' Disease, I explained why I chose RAI and not surgery. Still having doubts about if it was the right decision, I reasoned "It's probably not a big risk of vocal injury, anyway, but..." He put his pen down and looked at me sternly across his desk. "It IS NOT a small risk, it's a very REAL risk."

That reassurance from him was all I needed to close the door to anymore second guessing: Radioactive iodine treatment was the right decision for my Graves' Disease.

If you are suffering with this disease, I hope you find yours.

Peeking In

2011-02-04T10:44:00.003-06:00

Sorry for the late update this week; I picked up a lot of extra hours at my part time job this week and have had trouble finding time for much of anything else!

I'm hoping to get back on a normal posting schedule next week.

In the mean time, in case you missed it, I posted a link to the blog's facebook page for an article I was interviewed for towards the end of last year. You can see it here.

And while we're on the topic, why not head over to the Life with Graves' facebook page and "like" it? I share links to articles and other odds and ends there that I think you'll enjoy.

Hope you have a great weekend!

Ready for Spring

2011-01-26T13:28:00.006-06:00

I'm so ready to wear these out every day...
And my sandals. It's so much easier to not have to put on socks before heading out. There's some kind of freedom in having almost bare feet.

Lord, please send warm weather! I miss the abbreviated winter we usually have here in the south!

I'm sensing a trend here...

2011-01-19T13:20:00.016-06:00

One thing that has become apparent in my studying of others with Graves' Disease is that almost without exception (save the cases where children are diagnosed) a time of high-stress precedes a diagnosis of Graves' Disease.

As a matter of fact, it is accepted in the medical field that STRESS is a major risk factor for Graves' and other major diseases. Type A personalities tend to have more heart problems, for example.

In my situation, I attributed my symptoms to stress for over a year and then ended up where I had no choice but to reduce the stress in my life. My life depended on it. At age 25 I was on blood pressure medication, getting minimal sleep, and a laying in bed many nights convinced I was dying of a heart attack. I felt more like a 50 year old woman than a young woman in her prime. I just knew each day could be my last: my body would surely go "kaput" staying in flight or fight mode all the time.

I was pulling at least two all-nighters a month trying to keep up with my work load, working all hours of the day and all days of the week, averaging 3-5 hours of sleep a night, and working for someone who's ~~accolades were~~ satisfaction was impossible to get, no matter how much of myself I gave to the job. This combined with a cocktail of other factors, I believe, led to my development of Graves' Disease.

My theory on this is that as I tried to force my body to function at a high rate constantly, my immune system decided it would make my thyroid (which sets the tempo for your body) speed things up a bit and keep it that way. My body said "You want to burn the midnight oil for months at a time? Here you go, have it your way!" Then my body gave me no choice but to stay in high-output mode.
I knew there was only so much the doctors could do to treat my Graves' Disease. I had to make my own lifestyle changes if I wanted to get better. I believe with everything in me that I was killing myself. I could either continue to kill myself and be miserable while I was doing it, or I could decide that life was short and didn't need my help abbreviating it any more. The stress had to go. I was literally dying.

So we made some radical decisions. To others, it may have appeared that my husband and I were throwing caution to the wind, but we spent years praying and planning to make things possible. I'm hoping that by sharing the knowledge I gained, others can avoid major health issues associated with stress, and make necessary changes before they're needed.

In my life experience I have learned you have three choices when it comes to stress:

Option 1: Cope with and manage the stress.

I have always been a worrier: my thoughts race at night, I empathize too well at times, and have trouble "going with the flow." These are all reasons the Lord brought me a husband who does just the opposite of these things. He knew I'd need a laid back spouse to balance me out.

One of the most valuable things I've done when coping with stress is realizing that many times all I can do is pray for God's will to be done in bad situations. I cannot bear their burdens for them except in prayer. While I will allow myself to be burdened for a time, I must put boundaries in place that will allow me to move on and function. There is a time for concern, but you can't allow it to consume you. Allow yourself some time to think on it and/or cry, but don't dwell on it forever.

When my thoughts are racing at night, I write in a notebook to get thoughts out of my head and move on from them. That way I know when I wake in the morning I won't have forgotten anything I was racking my brain to remember the night before and can rest well.

From time to time, act like a kid. My dad took me and my sister to ride go karts a few years ago, and it was so much fun just to let loose and think about nothing but trying to beat my sister to the finish line. It was the first time in a long time I had thought about nothing but laughing and having fun, and it was invaluable in keeping my sanity. Do something childish. You'll be glad you did.

Option 2: Get rid of the stress.

At some point, if you have been unable to manage stress, you may have to make a decision to get rid of it altogether. This may be an emotionally taxing friend or family member that you need to limit your interaction with, paying off debt that is constantly over your head, or in my case leaving a job.

This was one of the easiest decisions in some ways and the hardest in others that me and my husband have made in our married lives. I was in a job that was no longer fulfilling for me and the sacrifices we were making for it as a family were far outweighing any payouts. It was the sole source of my stresses and had robbed me of everything important, namely time with my family and my health, and after much prayer and consideration we decided to do something radical. I would quit my job, without another one in place. As I mentioned above, my life depended on it, and any concern over money was pale in comparison.

In the end, it's really about the quality of life versus quantity. Maybe we would have had more money and more accolades and more respect if I had've continued to beat my brains out working. But we never could have enjoyed any of that. And really, it's not important to me anyway. Less is more. My loved ones count for much more than all those work-related things and the stress that comes with it.

I realize not everyone may be in as good a situation as we were to be able to cut your income in half. I, too, was stuck for awhile, unable to do anything, as I suddenly desperately needed my benefits after my Graves' diagnosis. But sometimes working towards relieving yourself of that stress is a stress-reliever in itself. During the time I could not leave, planning for and working towards the time I could gave me hope.

Maybe a family member drains you emotionally or is very needy to a fault; love them from distance and limit your interaction. If it seems like you can't get ahead on debt, develop a plan to get rid of it and free yourself from the burden.

If you can't manage the stress, perhaps it's time to move on.

Option 3: Try and keep up and do nothing.

Again, I know in some situations this is the only option you have - but sometimes I believe we choose to keep up because of the stigma that might go along with a radical decision. Or we believe we can't, but won't look at the situation objectively and see if we can.

If you choose to try and keep up and not make any adjustments to the level of stress in your life, at the very least try to reduce other risk factors for disease. Eat well, exercise, and ensure you're doing what you can to reduce hereditary or environmental factors.

Remember we were not made to work 24/7 and it's acceptable to have down time and rest. Don't force your body to do something it was not designed for.When it comes to stress, it's not a matter of if it will affect your health, it's a matter of when it will affect your health. It may not be Graves' - it might be high blood pressure, anxiety attacks, or exhaustion - but stress is a very real threat to your health.

After developing Graves' Disease, I never began to feel better until I removed the stress from my life. And you know what? I have such a peace about the decisions my husband and I made. Life is but a vapor, and who am I to shorten this gift we've been given? Instead, I choose to feel better so I can savor each moment I am gifted.

Who knows what the future may bring - I may decide to work again full time in my field, or do something else. Time will tell. Other situations will certainly be different than the one I was in when I was diagnosed. I stepped back from my career, but I gained my life back. And I haven't regretted it once. I believe that when I am ready to re-enter my field I will contribute more because of the trade-off I made.

Perhaps you're in a situation that is bringing more burden than blessing. How can you reduce stress in your life? Your health may depend on it.

Thyroid Awareness Month

2011-01-13T12:32:00.003-06:00

So it turns out January is Thyroid Awareness Month.

As someone who was forced to get acquainted with hers, I encourage you to get to know this misunderstood gland before you need to.

If you're tired, have dry skin, thinning hair, and have lost your oomph, it could be your thyroid.

If you're anxious, eating everything in sight, can't sleep, and have too much oomph, it could be your thyroid.

If you have an onset of strange, seemingly unrelated health and emotional issues - it could be your thyroid!!!

There's a neat campaign going on to share the "face" of thyroid disease and you can get more info here.

As I've learned thyroid disease respects no age or gender, so everyone should use this awareness month to find out more about what the thyroid does and potential issues associated with it.

As the cliche goes, knowledge is power!

Walking in a Winter Wonderland

2011-01-10T14:53:00.009-06:00

Here in Alabama, everything is shut down today thanks to "Winter Storm 2011." Or Snowpocalypse 2011 as some have been calling it.

Things are frozen and iced over and some folks north of us got as much as a foot of snow!

This is the view from our apartment balcony:
Some poor Auburn fans didn't make their flights to watch the championship due to the weather.

Let's hope the weather upset doesn't upset our state getting two Heisman winners and championships in years back to back! We'll be watching!

I'm not a football fan, but I sure am proud of our state teams showing everyone how it's done. So today, WAR EAGLE!

Welcome 2011!

2011-01-07T08:15:00.001-06:00

I welcomed 2011 in with a cocktail of cold meds as I've been fighting a sore throat, runny nose, and cough for about a week now. Not how I envisioned my New Year's Eve, but I am still very optimistic about this year. I just have a sense it's going to be full of good things!

Things I learned last year that I am proud to carry with me into the new year:

No amount of money will provide someone with enough security to justify sacrificing their health and sanity. God didn't design us to live like that and it translates to a wealth mentality.
If your doctor doesn't want you to be well-informed and proactive about your health, he's not the right doctor for you. Or anyone for that matter.
A marriage must function as a single unit - not two complimentary ones - for you to share goals and be a team.
Personal relationships are more important than individual accomplishments. (That wisdom I spotted on my dad's fridge and it has stayed with me.)

This is my brother-in-love, sister (and niece in utero!), me and the hubs this year at Christmas. You can see us last year here.

My goals for 2011:

Continue to seek a work/life balance that is fulfilling for me and allows me to put what is most important to me at the top of my priorities.
Eat more natural foods. I am cutting everything that requires a label advisory/warning out of my consumption habits because if the FDA requires it that can't be a good sign.
Lose 15lbs. I know I need to lose some weight, and while I have gone down a pants' size, my OBGYN wants me to lose this amount before he sees me next year.
Find a endocrinologist or general practitioner that will work with me (instead of against me) in my effort to live well with Graves' Disease.
Continue to grow in my marriage and work as a single unit as we pursue parenthood.

I hope and pray I can be successful with these in this new year! I wish you the best on your endeavors as well. We can do it with the help of the Lord.

Happy New Year!

Out and About

2010-12-21T12:52:00.005-06:00

Just a note to say...

I'll probably check in here or there, but this next week and a half or so I'm going to focus on enjoying Christmas and readying myself for the new year.
It's going to be a great one. I can just feel it!

I hope you take time to enjoy the awe and wonder of Christmas as well as the blessing of a new beginning as we bring this year to a close.

Merry Christmas and Happy New Year!

Shake What Your Mama Gave Ya

2010-12-17T08:30:00.001-06:00

Dear old Mom and Dad.

I look in the mirror each day and see more of them the older I get. I'm still trying to decide how I feel about that.

Some things I am extremely thankful they gave me. A few examples:

My parents passed down a strong work ethic.

They showed me and my sister that love is a choice.
Dad and mom taught us that we could do anything we put our minds to.

Me and my sister aren't too shabby looking, if I may say so myself.

Then there are things my parents gave me that I am not a fan of.

Exhibit A: This wrinkle that appears when I am concerned or thinking hard and is quickly becoming a permanent part of my expression, even when I'm not grimacing. This I credit my dad for, and if you look in the picture above you can almost make out his matching crevice.

I got my mom's big 'ole butt. That may not be appropriate blog fodder, but it is what it is and it came from my Mama. (My dad's side of the family is unmistakeably lacking in that area...)

I'm in my late 20s and I still get pimples. I can remember my dad skeezing my acne remedies when I was a teen, which would place him in his 40s. Relief will not come soon.

I have to get short lengths at most stores, and my mom has always been classified 'petite.'

The health issues passed down I like even less.

From my father's side I got a risk of thyroid problems (both hyper and hypo) and from my mother's side I received a family history of autoimmune disorders (diabetes and multiple sclerosis). The two met and exploded into Graves' Disease in me.

In my elementary understanding, having one autoimmune disorder also increases your risk for others. I guess the immune system has so much fun sabotaging stuff it just lets loose and goes crazy in some people.

In an interview I did in the past working as a journalist, a spokeswoman from the Lupus Foundation said autoimmune disorders run in families but not necessarily the same disease. It's almost like the malfunctioning immune system is what is passed on, not the specific disorder. So what you'll have is a family with several disorders/diseases represented on the autoimmune spectrum.

In any case, it's undeniable that there is a huge genetic factor. Now that I have an autoimmune disorder and thyroid issues associated with it, my sister has had her thyroid tested and will probably continue to periodically.

Thanks, mom and dad. And grandma and grandpa. And great-grandma...(I'll stop now.)

The Most Wonderful Time of the Year

2010-12-12T23:30:00.007-06:00

This year, I'm reclaiming Christmas for our little family. Last year (in one of those "Why does everything happen to me?!?!?!" times in life), we didn't get to do Christmas. While I was completely bottomed-out hypothyroid from my RAI, the townhouse we were renting was sold out from under us by the owner and we spent December making an unexpected move instead of celebrating.

Evidently while we thought jingle bells were ring-a-linging, the real estate agent handling the sale heard cha-chinging and didn't care about much else (including tenants' rights). I'm obviously not bitter...but he certainly Scrooged our Christmas spirit in '09.So this year I have decorated the whole apartment, even down to the bathroom.
I even committed a big no-no and put our tree up before Thanksgiving. And I am completely unashamed about that since I am making up for a lost year. Don't judge me. I also broke out my Christmas-season staple early and think it will get you in the spirit too! Here's one of my favorites:

It's Christmastime!

Brutal.

2010-12-09T21:42:00.011-06:00

The skin on my hands has been much dryer than "normal" since my development of Graves' Disease, but after I went hypo it has really become a challenge to keep them moisturized. As if the periodic swelling and numbness isn't enough to deal with...

But since a frigid winter has arrived here in the southeast, it has become a pretty hopeless battle.

It's certainly unusual for it to be so brutally cold in the southeast, but last night we had lows in the teens. To make matters worse it has been fairly windy, and my lips and hands are taking a beating.

Factor that in with habitual use of alcohol-based hand sanitizer in an attempt to stay well and you get what you see in the picture below.
I am losing the battle for the skin on my hands.

They are dry and cracked to the point of bleeding. Painful doesn't fully express what my hands feel like right now. They are freezing cold from the temperature and on fire with little cuts all at the same time.

I imagine to touch an alligator must feel something like petting my hands right about now.

One thing is for sure: my usual methods aren't working.

I may have to break down and start slathering my hands with lotion and putting on gloves overnight to break this cycle.

Any advice?

The Scapegoat

2010-12-06T11:12:00.012-06:00

In the spirit of Dear Thyroid, I am writing a letter directly to my thyroid.

Only I'm not mad.

Really, as I have recently been reminded, I owe my gland an apology.

Yes, I would actually like to apologize to my thyroid.

Here goes.

Dear (now nuked) Thyroid:

Where do I begin? Five years ago I would have never even given you a second thought. Sure, I knew of you since some of my family members had issues and hostility toward you, but I would wait to make my own judgement.

Sometimes, like others, I forget that you are simply the sacrificial lamb for Graves' Disease. You are merely a symptom of the real problem. You're just a gland going about your business, doing what you have to do to get your (perceived) job done.

I am aware that you are reacting to a calculated attack by my immune system. You're not the problem. It's the thyroid antibodies. They are really the root of this disease. You're merely trying to defend yourself. And I know it's friendly fire. Who am I to say defending yourself is a bad thing?

I'm sorry I couldn't let you stick around and get to know you on better terms. My only options were to inhibit you with drugs, maim you with radiation, or steal you out of the only home you've ever known via surgery.

I'm hoping researchers are on to something which might allow you to stick around in the future, though.

I'm sorry you have to be the fall guy for this disease. Since your reaction to the antibodies is so debilitating and we cannot yet stop the antibodies, we have to stop you. You must be sacrificed.

I'm sorry you must be the scapegoat.I obviously have some residual guilt about shooting first and asking questions later. Now I walk around with your carcass in my neck as some kind of battle trophy. I'm not proud of that. But, like you, I was doing what I believed was best for my protection at the time.

I would also be remiss if I didn't mention the fact that your overproduction made me feel like I was constantly running from a fire.

Again, not your fault...you're just the whipping boy.

My sincerest apologies,

(The person who decided your destiny and nuked you into oblivion for the foreseeable future.)

New Treatment for Graves' Disease?

2010-12-02T14:58:00.005-06:00

Google Alerts delivered this to my inbox today.

Hopefully this will lead to a new treatment option for those with Graves' Disease.

Read the abstract for the article in The Journal of Clinical Endocrinology and Metabolism here.

It is a great encouragement to know the scientific community is working in this area!

Update: It's a bunch of medical jargon, but the gist of it is they may be able to develop a medicine that will stop the antibodies which stimulate the thyroid (as opposed to inhibiting the thyroid itself).

Staying Well

2010-11-30T14:06:00.010-06:00

It's that time of year again: the time when we're all passing around cold and flu bugs and fighting to stay well.

For those of us with an autoimmune disorder, it seems particularly hard to get over any type of sickness. It has been my experience that since my Graves' Disease kicked into full gear my body is hit harder and takes longer to get well when I catch a virus.

This morning I woke up with a sore throat and body aches, so I pulled out my arsenal and have been trying to stay in bed all day to help my body fight whatever this is off.
Ideally, I'd like to avoid this stuff in the first place. How do we do that?

Here are some things I try to do (and which I have admittedly not been doing lately which may have contributed to me catching this current illness):

Get lots of Vitamin C, whether via juices or supplements like Emergen-C.
Make an effort to eat healthier.
Try to get plenty of rest. This is always a challenge, but supremely important this time of year.
Wash hands often and carry hand sanitizer. I try not to touch my face unless I've just done one of those two things.
If you are around someone who is sick - keep your distance!

I know we hear these all the time, but it's so important to stay well during cold and flu season. Especially for those who have malfunctioning immune systems.

If I am the sick person, I try to sneeze and cough inside my shirt collar. This way I am not allowing my germs to get airborne. Trust me: people will thank you for it.

Also, remember when self-medicating you need to pay attention to labels and warnings and ask your doctor if there is any question how an over-the-counter medicine will interact with your prescription medications or health conditions. Don't play around with guesswork when it comes to these.

Especially if you're hypERthyroid - those warning labels about thyroid disease and/or autoimmune disorders are for you!!! Those of us who are hypOthyroid should also exercise caution, but it is much riskier business for the ones still hyper.

Be well!

Simply Thankful.

2010-11-25T00:34:00.008-06:00

Today, as we all celebrate Thanksgiving, I wanted to do a post about things I'm thankful for.

You can read my post from last year to see why I'm thankful for Graves' Disease. (And yes, I am still thankful for this journey, possibly even more so than last year.)

This year, I want to share some other things I am grateful for:

I am thankful for Christmas music that plays in the background while I cook for family gatherings. It lifts my spirit in a special way.

I am thankful for the series of events that gave us a new appreciation for and brought us back to our hometown. I missed my family so much.

I am thankful this plant my mother gave me in July when we moved back is still blooming like crazy. It brightens my day.I am thankful for the Lord's blessings of babies on our family. We're multiplying and it's a joy to witness. I am especially excited about my sister and brother-in-love's little girl due in March!

I am thankful that someone discovered how awesome baking soda is. It's in my toothpaste and my cat litter and does magic with both. That confuses me, but I won't question awesomeness.

Speaking of cat litter, I am thankful someone invented clumping cat litter. God bless that person!

I am thankful for a little part-time seasonal job to help provide for our needs. It's nice to get out of the house and have some extra money.

I am thankful for the feedback I get on this blog. Sometimes it's hard to know if what I'm writing "hits home" with anyone, and when I get a comment saying it has, it blesses my heart.

I am thankful for life. The past six months or so I have been able to savor moments and take time to enjoy living, and it is so refreshing to live like each day is a gift from God.

I hope you have a wonderful Thanksgiving this year, eat lots of home cooked food, and take a moment to thank the Lord for His many blessings we are so undeserving of.

The Doctors tackle Graves' Disease

2010-11-22T14:24:00.005-06:00

Today's episode of The Doctors will discuss Graves' Disease.

This show airs at 3p.m. CT in my market but you can go here to see what time and channel it airs in your market.

I'm not sure if full episodes are available online for this, but I am hoping they do post them on their website as this is sure to be a great resource.

Preparing for a Miracle

2010-11-19T08:30:00.002-06:00

I feel it getting closer. Ever so slowly, I can sense it coming, inching its way upon us until it will steal our breath away. I was furious at my body for putting it off even further, but now that waiting period has vanished.

One day we will be parents to more than the furries.

Maybe it's a longing since our godchild is two states away and we can't love on her as much as we'd like. Perhaps it's the fact that my sister and her husband are expecting their first (they are affectionately calling them Little Boogie). Or it could be that I have been asked if I am expecting more than once recently (*ahem*). But soon we can begin to stop preventing.

For years, I've been preparing for a little miracle that will join us someday. I have come across baby things I had to have that I tucked away for years, saving them for when the time finally arrived.

Stuff like these two beauties, which will profess to everyone that my child belongs to a Beatles fanatic. The onesie I got a few months ago, but I have been hanging on to that pacifier keeper for years.
Ladies, don't tell me you haven't done this. Don't even try to play.

A lot has changed since I purchased that paci keeper (which has probably been over 5 years ago, no joke). Namely I now have an ugly tag-a-long in life called Graves' Disease. But what has not changed is my desire to be a mother. When I was a teenager I swore I would never get married. But even then I wanted to be a mom.

Allow me to be really transparent and share something: I am scared to death.

I am not worried about being unable to conceive.

We are fine with having our own or adopting (and I am completely fine with having a healthy number of BOTH, but I'm not sure Brian is all the way on board with 20 kids. I'm working on him, though!). When we were deciding on treatment options for me, that was one of the things we discussed. If we can't conceive, no big deal. We will not pursue any type of fertility treatments.

However, I am terrified that I won't be able to carry.

Lately I have learned alarming things about some women with Graves' Disease and their children in utero. Things like thyroid anti-bodies crossing over the placenta and attacking the baby's thyroid. Women who, in spite of treatment for the auto-immune disorder, still had harmful things floating in their blood that were detrimental to their child. Women who lost babies during or soon after birth. I can't even begin to process their loss.

I can handle being unable to get pregnant. But I don't know anyone who could handle losing a child, no matter how tiny or new. And I am fearful our path to parenthood could be a devastating process.

Lord, please help me to prepare in the best way I can for what this next phase may bring. Be it multiplication or loss, hold my hand through each moment. And give me grace to cherish it all.

The Numbers Game

2010-11-16T23:30:00.001-06:00

As I recounted here, it has been a bit of a challenge to get my lab results.

Late last week, they arrived in the mail.
I was a bit suprised to find out they're only testing two values, Free T4 and TSH, since I have heard so many thyroid patients talk about the value of testing other things. (There are many hormones floating around in the blood that are connected to your thyroid, you know.)

Here are my results in chronological order:

27MAY09 (diagnosis)

FT4: 1.83
TSH: less than 0.004

17AUG09 (approx. 6 weeks post-RAI)

FT4: 3.29
TSH: 0.004

16NOV09 (approx. 17 weeks post-RAI; 150mcg hormone replacement began after this visit)

FT4: 0.69
TSH: 18.166

19JAN10 (approx. 8 weeks after starting 150 mcg hormone replacement)

FT4: 1.04
TSH: 57.7772

19MAY10 (approx. 1 year after diagnosis; dosage adjusted down to 137 mcg after this visit)

FT4: 1.60
TSH: 0.214

2NOV10 (approx. 22 weeks after adjusting dose down to 137mcg)

FT4: 1.68
TSH: 0.711

These numbers have raised even more questions as they are so hard to understand - if one is low you're hyper but if it's high you're hypo, and other similar riddles you must figure out to fully understand lab results. For example, what's going on with that 57 point TSH in January?!

I must do some research to make this relevant information for me, but I am glad I finally have them.

Two Reasons

2010-11-15T12:04:00.006-06:00

There are two reasons my bathroom rug never stays put.

Instead, it ends up in a tussled wad up against the wall.Every time I spread it out all nice and neat in front of the tub, it ends up right back in a wad within a few hours.There are two reasons. One is Mr. Mustard, the other is Molly.

Crazy cats.

Keep Calm and Carry On

2010-11-12T10:25:00.011-06:00

When I was in my hummingbird phase, very hyperthyroid and my body was constantly in overdrive, there was a motto gaining in popularity that had been rediscovered in England.

It was exactly the simple phrase I needed to keep my wits about me when I thought at any moment my body would certainly spontaneously combust.

I made this poster my wallpaper for my computer at work, and when I would feel myself getting stressed out, I'd look at it.

You see, when I was hyper I could exhibit some control over my body by not getting worked up.

Any time I got mad or stressed out, I felt like my heart was going to take flight and leave the rest of my body in some sort of phoenix-esque pile of ashes.

If I could consciously force myself to stay calm, breathe deeply, and not get worked up, I could avoid those sensations quite well. If I could remind myself to relax and just go through the motions, to just carry on, I would be okay and the tense moments would pass.

The process I was using is known as biofeedback, and I'm convinced that while I was on the cusp of a thyroid storm it helped me avoid one. There were certainly times that it did not work for me, but even when I couldn't will my body to slow down it was a comfort to me, mentally, that if I just kept calm and carried on these days would be behind me at some point in the future.

If you're hyperthyroid, remember this phrase - Keep Calm and Carry On - if you can just will yourself to do those two things while you're running around on fire, your symptoms won't be quite as controlling. My hope is it just might help you function in your daily life until you become euthyroid or hypothyroid.

It certainly did for me.

British propaganda posters: Good for impending Nazi bombs and impending thyrotoxicosis.

The Hummingbird and the Slug

2010-11-09T10:34:00.008-06:00

It sounds like a children's book, kind of like the Turtle and the Hare, but it's not.

They are two versions of myself. The Hummingbird is the hyperthyroid me and the Slug is the hypothyroid me.

The former cannot calm down, although she tries; the latter can't get worked up although she knows she needs to.

The former feels like she can never land; the latter feels like she'll never fly.

The former never sleeps; the latter never wakes.

The Hummingbird was desperate to get outside of herself.

The Slug does not have the energy to do so.

I feel like I am constantly falling somewhere in between the two, never normal, always too revved up or in a state of deceleration.

Either way, I'm exhausted.

I wonder what I'll feel like when I'm euthyroid.

Ch-ch-changes (Turn and Face the Strange)

2010-11-08T11:52:00.002-06:00

I hope your week is off to a good start! Glad to have you here reading along.

I got some really positive feedback on the interviews last week (and I understand many of the interviewees did too), so I may start trying to make interviews a regular thing. My background is in journalism and I enjoyed doing them and I think they added a lot to the blog.

I've convinced my husband to become my "Artist in Residence" here at Life with Graves, so I think that will be a fun way to incorporate some visual aids into my writing and add some creativity.

Also, I've been thinking for some time now about overhauling the look of this blog, and since I purchased the url (as you may have noticed) I think I'll be doing that very soon. If the blog acts wonky or looks off when you visit, give me a little time - I'm going to try to post through the transition so it may be a slow process.

If you have any suggestions or input you'd like to offer, I'm certainly open! Blogging is something I've really been enjoying since I quit work and hope you are enjoying it as well.

Tomorrow I'll debut some of my better half's artwork!

Here's to a great week.

Mikayla, Elizabeth, and the Waiting

2010-11-04T09:21:00.008-05:00

This week we've learned that Graves' Disease isn't "a woman's disease", nor is it "just for grown-ups." Today I want to wrap things up by talking with a mother who has been told Graves Disease is a waiting game for her two girls: they have the auto-immune disorder but it has not "blossomed" to its full potential yet. Determined not to let it control them, they are being very proactive about their health.

Debbie (who has asked me not to use her last name for privacy) is someone who I corresponded with early in my journey. I was able to help her understand what her girls may be feeling, and she encouraged me in more ways than I know how to express as I was coping with the news that my life had changed forever.

I want you to meet her two beautiful girls, Elizabeth and Mikayla:

(photo credit: Debbie)

Mikayla is 15 years old and enjoys distance running and basketball for her school teams. She enjoys school and is planning on studying sports medicine when she graduates. She is a typical teenager who likes to spend time with her friends and is excited to get her drivers license next year!

Elizabeth is 12 years old and enjoys playing sports as well - on every school sports team! She also plays on a competitive soccer team and enjoys making people laugh. Her favorite subject is science and math and she wants to be a CSI when she graduates.

LwG: Tell me a little bit about your girls' health issues so far.
[Debbie]When Elizabeth was 10 she had been complaining of migraine type headaches for a while – most starting behind the eye. We had gone to the doctor about them, but they were not too concerned. One weekend she complained that her eye hurt and a couple days later she woke up with her eye swollen as if she had been in a fight, but no discoloration. I took her to the doctor and he immediately requested blood work. We then received the call, to make an appointment to see our family physician, and we were then advised that Elizabeth had Graves Disease.

As we were waiting for our appointment with the specialist, I began researching everything I could about the condition so that I would be prepared to ask questions.

I was very interested to read that one of the symptoms is an unexplained rapid heart rate. My oldest daughter, Mikayla, had suffered this condition since she was five or six and one pediatric cardiologist told us not to be concerned as it was a normal/abnormal heart rate. After Elizabeth’s diagnosis I discussed this with our family physician and agreed that Mikayla should have her thyroid levels tested as well.

Two days before we were to meet with the specialist with Elizabeth, and a day after Mikayla had her blood work done, Mikayla had a severe “rapid heart rate” attack and we rushed her to the emergency room. They began doing all the tests and when the doctor came in I advised him that she had her blood work done and he needs to check what her thyroid results were. He did and advised me that they are in the normal range. Because of my research I asked him what her thyroid antibody levels were. He was shocked to see that even though her thyroid levels were within the normal range, her antibodies exceeded 1000.

As Elizabeth was schedule to see the specialist shortly afterward, the specialist agreed to see both girls at the same appointment. After examining them and their blood work, he advised that they have extremely high levels of the thyroid antibodies but since their thyroid levels are within the normal range they are considered to have an autoimmune thyroid disorder and not Graves Disease…yet. Every six months they will have blood work to monitor their thyroid levels.

LwG: Do you have a family history of thyroid ailments or autoimmune disorder?
[Debbie]There is a history of thyroid conditions in my family. My paternal grandmother was diagnosed with graves disease in her 50’s and my paternal aunt was diagnosed as a teen. I also have a cousin who was diagnosed with Hashimoto’s disease as a teen.

Many family members suffer from other autoimmune diseases as well. Numerous family members have suffered from diabetes and my mom, brother and his daughter all suffer from different forms of arthritis.

LwG: What went through your mind when the doctor told you the girls were borderline and would eventually get GD?
[Debbie] It was an extreme relief that they currently don’t have the disease but there is a monster the closet that we know is going to jump out, we just don’t know when. However, we know what symptoms we should be looking for and we should be able to get treatment started before it gets out of hand.

LwG: In retrospect, were there some things about the girls' personalities or health that suddenly "made sense" with that diagnosis?
[Debbie] Definitely! After the initial diagnosis, I Googled everything I could on the disease. I found a parent discussion page and one common topic was how emotional the kids were and how easily some would cry. That was definitely Elizabeth. It explained Mikayla’s rapid heart rated. And suddenly we realized that the swelling at the base of their necks was a swollen thyroid.

LwG: What lifestyle changes have you made since getting this information?
[Debbie] We are very fortunate as our kids are very active in a variety of sports, so we didn’t need to encourage them to stay fit.

I read an article about how iodized salt can affect the thyroid, we decided to reduce and limit our salt intake. We try to limit the amount of prepared food we eat, and try to stick to shopping the perimeter of the grocery store – the fresh food isles. When we use canned good, we use low/reduced salt products.

LwG: Do you think they have made a difference?
[Debbie] Since we have curbed the salt, we have noticed that Elizabeth does not suffer from the migraine type headaches. When she is not eating properly, there is more of a tendency for the headaches to return. We have also noticed that their thyroids are no longer enlarged.

They are due to have their blood work done again in the next month, but at their last check up, their levels were in the mid normal range for the second consecutive time.

Medical experts are divided as to whether or not decreasing your salt intake has any effect on the thyroid. However, it seems to be working for our family – and if for nothing else, it is a healthier lifestyle choice.

LwG: How did you explain to the girls their health condition and make sure it wasn't scary for them?
[Debbie] From the moment we were first advised that Elizabeth & Mikayla had a thyroid condition, we decided that we would not let the condition define them.

They understand why it is important that they have their regular blood work done. We also make sure to take time to talk to all of their teachers to be watching for signs of – reduced concentration/inability to sit still/weight loss or gain/and more frequent need to use the washroom.

We have explained to them that eventually they will need to take medication or even surgery. It is important to have honest conversations with them and be able to answer any questions they may have.

Having family members with thyroid disorders lessens the scariness. My grandmother had her thyroid removed in her 50’s and had an incredibly active life for another 40 years.

LwG: What would you share with parents who suspect their child may have a thyroid problem?
[Debbie] If a parent suspects that something is wrong their child, there is a good possibility there is something wrong. Especially if there are other auto immune disorders in the family. Find a doctor that is willing to listen and ask them to test for thyroid antibodies. Our family physician was shocked that the doctor in the walk in clinic ordered a thyroid test. It is very uncommon for children to have a thyroid condition. We had talked to numerous doctors about Mikayla’s rapid heart rate, but no one looked to her thyroid. I took Elizabeth to the doctor because I thought something was stuck in her eye. If it was not for the one doctor that was on duty, we probably would not be aware of their condition today.

If a there is a family history of thyroid disease, parents should be familiar with the symptoms.

I am reminded that, like Norah's mom, when a parent thinks something is wrong, push to get answers - you know your child better than any doctor does. What seems like a mild problem could be a signal of something major. Debbie's decision to be proactive about her girls' health means they will have the best chance at living well with this disease.

I also love what Debbie says about not letting Graves' Disease "define" the girls - that is such an easy thing to do with a chronic condition but it can be very dangerous to your morale.

I hope you have enjoyed reading along this week as much as I have enjoyed learning more about these varied journeys. I hope to do another similar series in the future!

Completely Dumbfounded.

2010-11-03T09:00:00.003-05:00

I wish I could tell you that the events I'm about to recount aren't true. That they're a joke. I'm not being serious. It's too hilarious.

Boy, do I wish I could.

But this is completely factual. And this is exactly why people like me are being driven to general practitioners to monitor our thyroids. This is why I wrote my Open Letter. This kind of crap, quite frankly, is what makes me want to go off on someone. Boy oh boy, they should be thankful I'm not hyper anymore and am not having a total lack of self-control.

I have been seeing the same endocrinologist since May 2009 when I was diagnosed with Graves' Disease. I went to this doctor on referral from a very good OBGYN who I trust. According to all of his medical colleagues, my endo is a well-respected doctor at a leading medical school hospital. (I won't give any more information than that; I'm not interested in spending any time or energy on a libel accusation.)

I went to see my endocrinologist Tuesday (2nd November - Election Day) to check my thyroid levels since they've been adjusted. I was initially put on 150mcg post-RAI, but that was too much, so we lowered my dose to 137mcg awhile back. I feel like I'm very close to a good level but it still needs tweaking.

Every time I go for a visit they have me address an envelope to myself so they can send me my labs. Every single time I am asked to fill out this envelope. Every single time I do. Every single time they tell me it is for them to send me my lab results.

I have never seen any of my labs. None at all. I've never seen the thyroid panel that was done and sent over from my referring doctor or any that have been done since. Not. a. single. one. At my last visit I asked everyone I came in contact with - including my doctor and the nurse who's responsibility it is to send results - to please mail me all of my labs. They assured me they would.

That was 6 months ago. No labs were mailed.

At yesterday's visit, I decided I was going to ask for copies of all of my labs to be in my hands before I left.

The conversation went like this:

Me: Would it be possible to get copies of all of my labs before I leave today? I haven't seen any of them and (your nurse) told me at my last visit she'd mail them all to me. I haven't seen them at all.

Doc: Why do you want to see them?

Me: ***I really want to say "Because I paid for them, you told me I would see them, and they're mine you jerk!" but refrained. Instead I said:*** Because I am trying to be very proactive about my health and I can't do that if you don't provide me with the information I need to do that. I'd like to see what my levels are so that I can keep up with my progress."

Doc: Okay...I can give them to you right now if you'd like.

Me: That would be great! ***I'm thinking this is wonderful, mission accomplished, no confrontation, woohoo!***

Doc: ***tries to log on computer, realizes he doesn't have his access card, leaves room to get it, walks back in, logs on, and pulls out one of many envelopes I have filled out to have my lab results sent to me*** I'm going to draw you a little chart here.

I watch in disbelief as he draws this out on the back of said recycled envelope and hands it to me: Seriously? I am just dumbfounded. I was too in shock the rest of the visit to even say anything.

This is the kind of care I'm paying for. I trusted this person enough to eat RADIOACTIVE IODINE under their care, for goodness' sake.

It's beyond comprehension. So much that I feel like I should say "BOOYAH!" at the end of this post, because there are no words except "Wow..." to properly respond to this information.

So, BOOYAH!

If you have a hilariously shocking doctor moment to share, check out the blog's facebook page discussion to tell everyone about it.

P.S. We'll pick back up with our "unlikely Graves' Disease patients" series tomorrow. I just had to share this while it was fresh. I write better when I'm peeved.

Mark the Strong

2010-11-02T12:10:00.008-05:00

Meet Mark O'Brien, a 29-year-old who is overcoming Graves Disease. Mark lives in North Carolina and has worked as a broadcast journalist in television and radio for more than 10 years in Virginia, New York and North Carolina. He graduated from the University of Virginia with a bachelor's degree in biology and from Columbia University with a master's degree in journalism. Mark loves to travel, enjoys the arts and even goes to a NASCAR race or two (maybe we can get him down to Talladega sometime for the full race experience).

Mark with the Dalai Lama in May 2009, 4-6 weeks after he was diagnosed and began treatment (Photo credit: Mark O'Brien)

LwG: Tell me about your Graves journey – when did it begin, how did you get your diagnosis, etc.
[Mark O'Brien] My Graves' journey started around December 2008. I was working overnights (12a to 9a) at a TV station in Upstate New York, and a coworker asked me if I had gotten into a fight because one of my eyes looked dark and swollen. I hadn't, and we laughed it off. A couple of weeks later, my mother--not knowing the conversation between my coworker and I--also asked me what happened to my eye. That, coupled with the realization that I had lost nearly 20 pounds in the previous four months despite eating more food more frequently, got me to make an appointment with my doctor. Blood tests showed my thyroid hormone levels were way off. My primary care doctor suspected Graves' Disease, but it wasn't until I saw an endocrinologist about a month later that I was diagnosed.

LwG:Aside from the hyperthyroid symptoms, have you dealt with anything else associated with GD?
[Mark O'Brien] I'm definitely feeling the effects of TED now, even though I've been hypothyroid ever since my RAI about 18 months ago (actually it took about three months after my RAI to become hypo). My left eye protrudes significantly, but not to the point that I can't close my eyelids. My eyes are often red and watery with puffy bags and dark circles underneath both. Recently, the vision in my left eye has become fuzzier, but only slightly. About four months ago, I also developed firm nodules underneath scar tissue on my right leg below the knee. The scar is from a second-degree burn I got 17 years ago, and my new endocrinologist believes it's a case of pretibial myxoedema localized to the scar following treatment for hyperthyroidism. There are cases of this happening before. Other than that, I've seen significant weight gain associated with hypothyroidism, gaining at least 10-15 pounds in the last year.

LwG: Do you have a family history of thyroid ailments or autoimmune disease?
[Mark O'Brien] My mother is on Synthroid for hypothyroidism. She was never diagnosed with Graves' Disease, however. Also, while not a family member, it's coincidental that the coworker who spotted my first Graves' symptom also developed Celiac Disease, another autoimmune disorder, while working on the same shift as I.

LwG: What went through your mind when the doctor told you that you had Graves' Disease?
[Mark O'Brien] I wasn't sure what to think. Of course, you never want to hear you have an incurable disease, but the fact that it can be so very treatable was reassuring. Also, my doctors said my symptoms overall were pretty mild and that we appeared to catch the disease early on. That also calmed my fears.

LwG: What was the reaction of your family?
[Mark O'Brien] My mother was very worried. Her experience with a thyroid disorder had her thinking the worst about how it could affect my day-to-day life in the future. There was brief point in time when she said she felt guilty and blamed herself. My father and brother were calmer about it, probably reassured by the fact that this is a treatable disease. Of course, everyone wished me well and said they were praying for me.

LwG: In retrospect, were there some things about your personality or health that suddenly "made sense" with that diagnosis?
[Mark O'Brien] As I mentioned before, the swollen eye and weight loss were two big indications, but I also had become shorter tempered, felt warm when everyone else was comfortable in a room, had a racing heartbeat even when I was sitting calmly on the couch, and could see some minor trembling in my hands. I later found out that these were all symptoms of hyperthyroidism.

LwG: What treatment options were you given and ultimately, how did you decide what course of action to take?
[Mark O'Brien] I was told there were three options: medication, radioactive iodine and surgery. I wanted to avoid the third option at all costs. The thought of taking radiation didn't sit well with me at first either, so we tried medication. That, however, didn't work. I was told we could continue on the medication and hope for the best, or jump right to the RAI. While I was tempted to stay on the medication, the endocrinologist told me that even if the medicine began to work and I could stop taking the meds, there was no guarantee that there wouldn't be a relapse. If the hyperthyroidism came back, I would be faced with the three options yet again, with no guarantee the meds would work a second time. So, I decided to take the RAI. I'd talked with my doctors and done some research and found that RAI was effective in most cases. I wasn't excited about having to take a synthetic thyroid hormone medication every day, but I felt it was the best choice for me at that time.

LwG: Did you have to make adjustments to your work schedule or job, and what were your coworkers'/boss's reaction?
[Mark O'Brien]It wasn't until earlier this year that I began to feel the symptoms catching up with me. I took the RAI on a Friday in April of 2009, and was back at work by Monday. I never took a day off to recuperate because I never felt the toll it was taking on my body. My endocrinologist even said to me at one point that she was surprised at the rebound my body had made in such short time because she had hospitalized other patients with similar numbers, but like I said, I never felt any different. Then in early 2010, I could feel my body lagging on normal everyday tasks. I was starting to lose my energy, my drive, my motivation, etc. I made a big move from New York to North Carolina in late July, and that sent my body over the edge. I didn't feel like myself, and I basically couldn't function on a daily basis. Not to mention some of the symptoms described above flared up again. For the last two weeks of October, I have been on medical leave from work because my body couldn't take it any more. I needed rest, time to let my body heal from the roller coaster it had been through the previous two years. My new boss was very understanding and more supportive than I expected. Others at work have called to express their support, even though they don't know the full details.

LwG: Do you think your diagnosis of Graves' Disease was harder to make due to being male?
[Mark O'Brien] Surprisingly, no. My primary care doctor at the time said right away that this may be something related to my thyroid. When the blood tests came back, she said it was Graves' Disease, but wanted an endocrinologist to make the official diagnosis. It wasn't until after the diagnosis when I was doing my research on this that I discovered that Graves' is rare in men. I'm thankful my doctors didn't let the fact that I was a young male get in the way of the actual cause.

LwG: What are your thoughts on the genetics versus environmental factors with this disease - do you think anything contributed to your development of Graves' Disease?
[Mark O'Brien] With so little known about what causes GD, I have to think both environmental and genetic factors play a role. As I've mentioned, my mother has a thyroid disorder. Also, I was under an extreme amount of stress around the time I was diagnosed--overnight work hours, odd eating habits, and a new boss who made work difficult for me. If the stress weren't around at the time, I doubt I'd be dealing with GD right now. Who knows whether I would have been diagnosed later in life, but I think the stress was a catalyst for my diagnoses.

LwG: What would you share with men who suspect they have a thyroid problem?
[Mark O'Brien] I would encourage them to talk with their doctor and ask them to do a blood test checking for thyroid disorders. Better to know and not have it than to have it and not know. I also try to avoid thinking that this is a "woman's disease." Obviously men are affected, and that's enough for me to treat this as any other health concern. Just because it doesn't happen often doesn't mean it doesn't happen at all.

LwG: What would you like people to know from a male perspective about Graves' Disease?
[Mark O'Brien] I guess I would want people to know that we deal with the same symptoms and feelings that anyone else who has GD deals with. This is a disease that attacks a gland that has so much impact and effect on the rest of the body. It doesn't matter who you are.

LwG: What was it that you pulled strength from to fight back with Graves' Disease?
[Mark O'Brien] A strong faith, supportive family and friends, informative and helpful doctors and a will not to be taken down by this disease.

Mark's case is much like mine - someone else pointed out outward symptoms indicative of an internal problem - and he believes, like I do, that stress was a "catalyst" for the disease. His thoughts are also a good reminder that much of the battle is fought within our spiritual selves as well as the physical.

We'll keep an eye on Mark as he is planning to start a blog about Graves' Disease from the male perspective, so I'll pass along a link as soon as he does!

Norah the Warrior

2010-11-01T08:45:00.005-05:00

A few weeks ago, Google Alerts dropped a link to my inbox to a blog that would shock me. It was a "standard" family blog, a woman sharing about her life and kids, nothing unusual. Then her toddler was diagnosed with Pediatric Graves' Disease. Since then her blog has become a bit of a resource for people searching the web for information about pediatric Graves'.

Meet four-year-old Norah, a tiny girl with a big spirit.

Norah post-op from her thyroidectomy (photo credit: Lock Mommy)

LwG: First of all, tell me a little bit about Norah's journey so far.
[Lori Greene] Norah was diagnosed with Graves Disease at the beginning of August, 2010. I had taken her to the pediatrician because of a visible lump on her neck, and blood tests showed that Norah was hyperthyroid. We were sent to Children’s Hospital Boston for further testing, and we received the diagnosis the following week.

LwG: Do you have a family history of thyroid ailments?
[Lori Greene] I have hypothyroidism and have been taking levothyroxine since I was about 25. My mother has thyroid issues as well.

LwG: What went through your mind when the doctor told you Norah had Graves' Disease?
[Lori Greene] By then, the initial panic had worn off, so I was mostly relieved to know what the problem was and to have a treatment plan for it. I had high hopes that she would go into remission.

LwG: In retrospect, were there some things about Norah's personality or health that suddenly "made sense" with that diagnosis?
[Lori Greene] A few months after Norah turned 3, her preschool teacher mentioned that she was having trouble sitting still during “circle time,” and was very emotional. She also had puffy eyes, diarrhea, she ate constantly, tossed and turned all night, and had a rapid, pounding heartbeat. It’s hard to believe that I didn’t put these symptoms together and realize something was wrong, but I didn’t. As far as the behavior, I figured she was just going through a phase, and she wasn’t complaining about any of her physical symptoms. They were only obvious in hindsight.

LwG: What treatment options were you given for Norah?
[Lori Greene] Norah’s endocrinologist prescribed methimazole, and the plan was to wait and see if she would go into remission. We took her to acupuncture, a chiropractor, and used natural supplements to try to help her body fight off the disease.

LwG: Ultimately, how did you decide what course of action to take?
[Lori Greene] We ended up with no choice. Norah developed an allergic reaction (hives) to the methimazole twice, so she couldn’t continue with it. Since PTU is not considered safe for children, there was no other medication available for her. She was too young for RAI, so surgery was our only option.

LwG: How did you ensure that the treatment undertaken wasn't scary or overwhelming for her?
[Lori Greene] I talked to her about everything that was going to happen so there were no surprises. I showed her photos of an operating room and doctors in scrubs and masks, so she knew what to expect. Then I just tried to keep myself calm and not let her see that I was worried. That was the hard part.

LwG: Long-term, what is the outlook for Norah?
[Lori Greene] Norah’s thyroid was removed on October 7th, 2010, so she will take a daily thyroid replacement forever. After surgery she had to have blood drawn to monitor her calcium level, and she took calcium and vitamin D for a couple of weeks. Now we have to get her thyroid dosage just right and after that she’ll be tested a couple of times per year to make sure it doesn’t need to be adjusted.

LwG: In your situation, it proved life-saving that you had Norah's lump seen about despite the doctor's advice just to keep an eye on it - what would you say to parents about how well they know their child's health versus the doctor?
[Lori Greene] I can’t tell you how many times I’ve *known* that one of my kids was sick before the doctor confirmed it. Listen to your intuition!! The doctor was shocked when he saw Norah’s lump, even though we had talked on the phone and he didn’t think it was serious.

LwG: What would you share with parents who suspect their child may have a thyroid problem?
[Lori Greene] It’s a simple blood test, so if you suspect a thyroid problem, insist on having the test done.

LwG: Do you think there are any genetic or environmental factors that played a role in Norah's Graves Disease?
[Lori Greene] It’s hard to say, but it looks like she developed the symptoms of Graves when she was just over 3 years old. She isn’t exposed to anything that my other two children are not also exposed to. I asked the doctor about a genetic link and he said that autoimmune and thyroid issues have become so common that most families have someone with those problems.

LwG: What would you like people to know about pediatric Graves' Disease?
[Lori Greene] It can make you feel isolated because there’s not a whole lot of information out there, but Pediatric Graves Disease is on the rise. Find a great doctor and offer your support to other families. It makes such a difference if you can hear what another family has gone through and learn from their experiences.

I would also like to mention that we chose to have Norah’s surgery at the Yale-New Haven Children’s Hospital in New Haven, Connecticut. Pediatric thyroidectomy is a rare and delicate surgery. The way to reduce the possible complications is to have an experienced pediatric thyroid surgeon. Considering that only about 10 kids under 5 years old have their thyroid removed due to Graves Disease annually, it’s hard to find someone with a lot of experience. I found Dr. Scott Rivkees by chance, and YNHH has a surgical team that is very experienced in pediatric thyroidectomy - Dr. Christopher Breuer and Dr. Robert Udelsman. They treat kids from all over the country and sometimes from other countries, check them out!

The stories of children with this auto-immune disorder have been the most humbling for me. I know how terrible I felt and how the disease manifested itself in me, and I cannot fathom a child having to go through those things. But the amazing thing is, just like Norah, the children's smiles tell you the disease has not stolen their zeal for life.

I remember them when Graves' Disease tries to steal mine.

In Preparation

2010-10-29T11:32:00.006-05:00

According to the Mayo Clinic's article here, women are 7 times more likely than men to develop Graves' Disease. They also list the age of onset as after 20 years.

But what if you're not a woman or not over 20?

Next week we're going to look at the "minority" of Graves' Disease patients in a series of Q&A posts. I've asked several parents who have children with pediatric Graves' Disease to share, as well as some men who have been living with this auto-immune disease.

A family friend has Graves' Disease and he almost lost his vision due to bulging eyes before he got a diagnosis. I can't help but think on some level his being male got in the way of a quicker diagnosis since he's not in the "at-risk population." I hope that this series of posts will help people realize that it's a threat for men and children too.

This should be very informative!

We'll kick things off on Monday with Norah's story, who you may remember me sharing about on the facebook page last week.

I hope you'll read along.

Halloween Costume Ideas for those of us with TED

2010-10-28T07:55:00.004-05:00

Halloween is coming up on Sunday, and if you have thyroid eye disease you have a bit of a built in costume.

Come on, you know it scares YOU when you see it in the mirror, it's bound to scare others too.

How about some ideas to make that menacing stare work for you, instead of against you?

What in the world could make bulging eyes look weirder? Color contacts. Get some rad neon color on those babies and people will start noticing the color instead of the size.

If your eyes aren't equally affected (as mine aren't), throw in some nasty fake teeth and a hump and go as Igor.

Or you could go as the ShamWOW! guy - he's got a crazy eye, as my good friend AshMo has pointed out. I can't promise you'll get a good response to his "You're gonna love my nuts!" line, however.

If puffiness is your main problem with TED, you can go as a character from Cheech and Chong or Half Baked. (Please, no method acting!)

If you're not down for enhancing your freakish eyes, cover them up.

Choose a superhero with a mask. Underwear on the outside of your pants is totally optional, but would help you draw attention away from your googly eyes and towards something...else.

If you're in New Orleans, La. or Mobile, Ala. pull out your Mardis Gras mask and tell everyone you're starting the celebration really early this year.

This is my personal favorite mask. It covers up 100% of the effects of TED.It's conducive to naps, which if you're hypothyroid at this point you know the value of (and if you're hyper you miss them). It also comes along with a free "Yes I know I'm napping for the fourth time today butmythyroidisoffandIcan'thelpitsogetoffmyfreakin'back" response suggestion. Mine was a gift from my bonus mom in life (mother in law) and I have used it almost daily. It's a good cover up. Just don't drive while you're wearing it, please?!

Happy Halloween!

Treat and Release

2010-10-26T11:43:00.009-05:00

I wanted to dedicate a post to my thoughts on the call for a re-evaluation on the current "treat and release" policy with regard to Radioactive Iodine Treatment.

My last post has the brief version of the controversy with some links to news articles.

Basically this "treat and release" is the policy of dosing someone with radioactive iodine, monitoring them for a few minutes (in my case it was 15), and releasing them to carry out their isolation at home.

Treat and release is not to be confused with Trap-Neuter-Release, which I fully support. Well, perhaps they are similar...trap, ablate thyroid, release...hmmm, maybe more alike than I thought. Either way both us and the cats are sent home with a (hopefully) non-functioning organ.

Anyhoo...

I don't think public exposure is enough to be concerned about, although obviously the radiation is concentrated enough to set off alarms. I would imagine exposure to the public would be fleeting at best. My husband was advised that we could stay in the same house as long as he didn't sit near me for long amounts of time, leading me to believe direct (close) exposure over a period of time (hours, days, etc.) would be required for him to be at any theoretical risk. So for someone to "cross paths" with someone who had undergone RAI would, in my opinion, be a low-to-no-risk situation.

However, if people are checking into hotels immediately after (as reports suggest) or riding public transportation, perhaps patients need to be given an option on staying in a hospital facility since they are apparently trying to avoid bringing the radiation into their homes. It appears as though a "post-dosing etiquette" needs to be explained to patients at the very least so they know what is and is not acceptable behavior when you've been radiated.

I'd be much more concerned with the health professionals dosing patients, therefore being exposed quite regularly, walking among the general population than those who had been dosed. In my opinion they would be at more risk of "carrying" radiation on a long-term basis and exposing others.
For my own personal RAI treatment, I would've preferred to stay somewhere and let them take the fallout.

Some of the unsavory memories I have are of using disposable utensils and plates, eating packaged food, flushing the toilet 3 times after every use, rinsing the shower with large kitchen pots full of water after I bathed, wearing gloves and plastic anytime I had to touch anything, and avoiding anyone and anything in house that was alive or I couldn't throw away. My cell phone and TV remote were put in ziploc bags, I wrapped the computer keyboard in saran wrap for use, I slept on an air mattress and pillow wrapped in plastic, and did all I could still knowing that some contamination was inevitable. I would have without a doubt preferred to stay in a dedicated facility for a few days with people knowledgeable about minimizing risk when disposing of radioactive materials.

Not to mention sharing a bathroom with someone I sincerely want to protect from my hazardous off-put.

You cannot "clean" radiation - you must wait for it to die - and while I'm not extremely concerned about the general public being contaminated in a brief encounter, I think it would be in the best interest of RAI patients and those who live in their households (and their garbage men!) to keep them in isolation in a dedicated facility for at least 3 days.

What do you think?

Late Breaking

2010-10-22T13:03:00.002-05:00

Rep. Edward Markey (D-Mass.) is calling for tighter regulations regarding things like Radioactive Iodine treatment.

Read about it here, here, and here.

How do you feel about his calling for tighter regulations concerning things like RAI?

Would you be concerned if you were unknowingly exposed to radiation by someone who had undergone the procedure?

If you have undergone RAI, what was your isolation experience like? Would you have stayed in confinement in a hospital facility if able?

Join the conversation here on this blog's facebook page.

What I'm Reading

2010-10-22T10:18:00.005-05:00

Here's my bedside table right now (notice I was careful to leave out the bed because we're not bed-makers at our house):There on top is a book I began reading last night. It's this book from Mary Shomon. I started to order her title "Living Well with Graves' Disease," but I decided to go with this one instead because the reviews are so much better than for hers on GD.

I'm very glad I did. As she puts forth in this book, the majority of people with any thyroid disorder ultimately become hypothyroid as a result of their treatment. Even though I have Graves' Disease, I have the condition of being hypothyroid. (This is true for those of us who undergo a permanent solution - radioactive iodine or thyroidectomy - to our hyper symptoms.)So far, I am blown away by this book. After reading the introduction (which was a little heavy on the "celebrate my book!" side), I was hooked. Some parts are kind of technical and I had to reread them a few times to really grasp the concept, but had I not read her explanations I would still be ignorant to exactly how the endocrine system and thyroid work. She makes the medical jargon approachable.

The journalist in me would like to see footnotes for some of her statements and where she gets her information, but I realize this was written to be a sort of "handbook" and not a research paper.

A couple of things Shomon says that surprised me:

1 in 8 women will develop a thyroid disorder in their lifetime
Hypothyroidism affects more people than diabetes

Shomon paints herself as a renegade against the old school of thought and medical elite, and in that way I feel like she's "on my team" as I'm reading, and I really appreciate that.

Not a bad purchase to get my total to $25 so I can get Amazon's free shipping! I'm pretty sure I'll actually finish this one. (If you must know, it was all about getting the new Sufjan Stevens album and a replacement album for the hubs.)

An Open Letter to Our Endocrinologists

2010-10-20T11:22:00.009-05:00

Dear Endocrinologists:

Many of us with thyroid issues are being driven to general practitioners rather than specialists like you because of the treatment we receive (or, more accurately, don't receive).

This is evidence that no matter what your expertise, the way you care for your patients is more important than any professional accolades.

House makes for a great television show, but he's not a real-life model. House, in real life, would've probably been punched several times by frustrated patients by now.

I realize you see many sick people - some diabetic, some thyroid issues, some others - but we should all be equally important, no favor or greater interest given to any one disease.

Therefore, I'd like to make some requests on behalf of us all.

First, treat me like you care about my well being. Take time to listen. Ask me questions. Don't just rely on the blood work. You may look at me and see dollar signs, but me and my insurance are paying for something we expect to be a good experience. I want to be able to recommend you to others who might be facing similar illnesses. Treat me like you would treat your family. You should want your reputation to be someone who cares about the health of their patients, not someone who is too busy to care.

Second, take time to explain my treatment options. Explain exactly what I can expect so there are no surprises. Allow me time to do research before reaching a decision. The easiest treatment for you to oversee isn't necessarily what's best for me.

Third, if I bring up an issue I'm having that you're sure isn't related to my Graves or thyroid, don't just dismiss it. Explain to me why it's not. If it's serious enough for me to bring up in my visit, it's affecting my daily life. I am suffering from a disease that has affected every part of my body in troublesome ways and I'd rather give you too much information than not enough.

Alternately, if I bring up an issue that you know is related to my Graves or thyroid, explain to me what might be contributing and how I can help correct it. If it's indicative my hormone levels are off, tell me. Tell me if it could indicate I'm getting too much or too little. Tell me if it's a side effect of the radiation. Tell me if it's the Graves Disease. Offer me ways that I can take control of my health and remedy the issues.

Finally, keep me in the loop. Let me see my lab results. Let me keep up with my progress. I cannot be proactive unless you inform me of my status. It's not that I don't trust you to do the best job you can on levelling my hormones; it's about my doing all I can to ensure you're successful in treating me.

Ultimately we must work as a team if I'm going to get better and if you hope to grow your client list via word-of-mouth. Please help me do my part and don't dismiss me because you think it's quicker to go on blood tests.

Sincerely,
Your Patient

(Not So) Secret Weapons

2010-10-18T15:29:00.005-05:00

Since dry, brittle hair and parched skin seem to be a staple in this battle for my body, I thought I'd share a couple of items I've purchased recently that are helping in a big way.

The first is a glosser for my hair. I'm not sure if Sally Beauty Supply is nationwide, but that's where I purchased this one on the recommendation of my cousin.

It's full of oils and has been great at getting moisture back in my hair. The key is to use it often enough it does its job but not so often it weighs my hair down.

What I've been doing is towel drying my hair (as gently as possible), spraying the glosser on my hair and combing it through, and then wrapping my hair with a bandanna for a good 8-10 hours. (I'm hoping to come across a silk scarf or hair wrap soon, as I know they are better for this purpose.) I do this once a week.
The second thing I've done is bought lotion to keep by my bedside for my hands.

When our godchild was an infant and we kept her a lot, bedtime bath was a life-saver at getting that kid to sleep. I decided to get a lotion with lavender in it since it does such a good job at helping one relax.

One of the biggest challenges I've had in keeping my hands moisturized is simply remembering to put lotion on, but by keeping it at my bedside I'm reminded to put on lotion and the scent helps cue my body it's time to rest (which can be tough when your hormones aren't at a good level).

Small successes should be celebrated! And less itchy hands are one of mine.

Come On Over!

2010-10-15T16:22:00.005-05:00

I've started a facebook page for this blog here. Please come over and "like" it!

It makes me chuckle a bit that you have to like "Life with Graves'" to become a fan, and you'd be hard pressed to find someone who does like life with Graves' disease...

I'm going to share links to current articles there and other random goodies you might be interested in and would love to have you along.

Enjoy your weekend!

Happy Hormones

2010-10-11T12:53:00.007-05:00

Every since we killed my thyroid (my preferred method was radioactive iodine, yours may have been a thyroidectomy or perhaps you do not have Graves and your thyroid began under producing on its own), I have accepted a lifelong partner in hormone replacement. Unless my thyroid regenerates itself, me and these will be partners for life.

This being the case, I prefer to see my levothyroxine like this:
It's sort of an Alice in Wonderland "Eat Me" happy face personality. It keeps me positive and energetic and functional. We're buds.

There are several options for hormone replacement. I went with levothyroxine because it was the most affordable. I know people who say it doesn't work as well as the brand synthroid, but with my insurance it was an extra $15 a month for the brand and I was preparing for "funemployment," so I stuck with the cheaper version. It just seemed to be the best option for me at the time.
The ugly thing about thyroid hormone replacement is it takes several weeks to build up in your system. When your dosage is adjusted, it's not an immediate fix - your hormone has to be allowed time to increase (or decrease) in your body.

Thanks to this some of us find ourselves on a roller coaster of adjusting hormones.

Some tips I have received from my doctor, pharmacist, and/or others who are on thyroid hormone replacement:

Take in the morning at the same time every morning. I take mine as soon as I get up, per pharmacist recommendations. I was taking it at exactly the same time when I was working, but now that I'm not on a set schedule, I have been taking it anywhere from between 8 to 10a.m. I can tell a huge difference in its effectiveness.
Take it on an empty stomach. I was told by my doctor not to eat an hour before or an hour after. This is another reason I take it as soon as I get up - my stomach is empty and then I wait an hour to eat or drink anything other than water. An aunt who has Hashimoto's also told me her hormone was much more effective when taken on an empty stomach.
Avoid anything with calcium. This was shared in my comments by someone who has been an invaluable friend and guide in navigating my newly "hypo" life, Meg. (I can't thank you enough for helping me read what my body was trying to tell me!) She says wait at least an hour before drinking any dairy.
Avoid iron for at least four hours. My doctor told me multi-vitamins were okay as long as I followed this rule. Iron prevents the hormone from being absorbed as well. Therefore don't take any vitamin or supplement with iron within 4 hours of your hormone dose. He also said to follow this for any supplements with calcium, so if you're taking calcium to supplement your diet it's good to space that out too. (Those of us with Graves' probably should since there is a heightened risk of osteoporosis for us.)

Also, pay attention to your body's signals - especially if you begin having hyper symptoms again. I was on 150mcg and did just that. Turns out I was getting too much hormone and taken down to 137mcg, where I am currently. It is possible to get too much replacement hormone! You know your body better than any doctor, so if something isn't right, speak up.

Motivated

2010-10-08T12:05:00.005-05:00

There's a realization we women must come to at some point in our adult lives. It's devastating, but we must accept it to move on. I came to terms with it some time ago.

I will never wear the clothes I wore in high school.

This is probably a good thing, considering now I'm way too old to pull that stuff off anyway, but boy it would be awesome to buy a size 7 jean again. However the reality is I will probably never be in the single digits again.

Quite frankly, my thyroid took care of any threat of being that small ever again. Thank you, thyroid. I was afraid that would happen and would've been devastated.

Weight gain associated with being hypothyroid is extremely common. I'd say almost a given. The "Freshman 15" have nothing on thyroid gain! Since the thyroid hormones regulate metabolism, the two are intimately connected.

Thankfully, I swore off the scale a long time ago and only hear numbers when I go to the doctor. I always remind them that the weighing is the most painful part of my visit. I'm more of a "judge it by how your clothes fit" person. Less opportunities for disappointment.

When my Graves' journey started, I was down to a size 12. I'd like to think I got there myself but in hindsight I'm pretty sure my thyroid was mildly overactive, unbeknownst to me. I felt good, was pleased with the way I looked, and was overall satisfied with my physical health. I maintained that while my thyroid kicked up and I ate everything in sight. Constantly. Without regard to nutritional value. Those were the days.

I was getting away with so much I didn't realize. I knew I couldn't continue eating like that after my RAI. My thyroid bottomed out, and, well...so did my bottom. I ballooned up to a size 16 in no time. And I was eating much smaller portions and being smarter about what I ate. Thankfully, I finally plateaued and stopped. And I've been hanging around 16 every since.

I had accepted that my weight was going to be up, and although I wasn't happy with the way I looked, I thought I'd just have to deal with it. After all - maintaining my weight meant I didn't have to buy new clothes. Saving money is always a good thing, right?

Then I got motivated.

I had two different people ask me within days of each other if I was pregnant. (When I answered the first one with "Nope, just chubby!" I think she was more embarrassed than I was. The second one played it off very effectively by saying "Oh, that's right, it's Amber that's pregnant." Amber is my sister who is, indeed, pregnant.) Between my under active thyroid and the quarter-aged spread, I appeared preggers. Awesome.

Kick in the butt received. That's when I made up my mind I was going to fight to get my body back. I've faced Graves' head on and reclaimed my thyroid (even if it meant destroying it in the process). Now I have to reclaim my weight from my thyroid.

So for two weeks now, I've been exercising 30 minutes a day every day. I've missed a couple, but overall I've stuck with it. I can tell a major difference in the way I feel. I thought I might be getting really low on my levathyroxine, but now that I'm walking I don't think I'm as low as I thought. I have more energy now. Laziness breeds laziness and I believe that's what was happening with me, for the most part.My mom gave me these 1lb weights she had sitting around. So far they've only been decorations in my living room, but they're a good visual aid. So I'm using them here. At least they're getting used for something, right?

30 minutes of walking a day, sometimes I throw in some jumping jacks (which are way harder than I remember being a kid, by the way) and sit-ups. Especially the sit-ups. Because my belly is creating false illusions of pregnancy.

Hopefully I'll make some progress! I can assure you I will not be wearing anything with an Empire waist again until I do.

The Other Victim

2010-10-06T11:16:00.013-05:00

I have a confession to make.

It has been easy for me to think that I am the only one in my house affected by this disease.

But I'm not.

In June of 2006 I married my best friend. He is all the things that I am missing in my personality and qualities I need to learn for myself. We waited until marriage, went through six hours of pre-marital counseling, and worked hard to understand what we were getting into. It has proved invaluable to our relationship, but really?

We had no idea.

Within 3 years of our young, tender marriage, we would learn.
It is said that you hurt the ones you love the most. I agree.

Graves' Disease is not only a body changer (both inside and out). It is a personality changer. It affects your outlook on life and your relationships. I am hoping the medical community finally recognizes what those of us with Graves' have known for years - there is a psychiatric element to this disease. I believed I would never get the person back I was before. My handwriting even changed for a time (even after the tremors had subsided).

My husband cooked every meal we had at home for over a year, most nights after driving an hour and a half home from work. He did all the laundry. He did most every household thing that the two of us should've been sharing duties on for over a year when going to work each day spent any of me I had left.

Through this time I had such a short fuse that I was like a moody teenager. I yelled. I cursed. I screamed. I launched things across the room. I couldn't even fold a piece of laundry without getting frustrated. Unfortunately, since he was in front of me, my dear husband caught all of it. And he responded to my firecracker-like tendencies with poise only he could muster.

In all my ungratefulness, he continued to serve. When I began to feel better and was much more even-keeled, we were sitting together overlooking the little lake we used to live beside. I knew it was time to make an apology.

"I know I have been a beast for the past several months," I said. I apologized for being impossible to deal with. I thanked him for all he'd done for me - cooking, cleaning, everything. I apologized for being so different than the girl he married. Then I said "I know there had to be times you thought 'I didn't sign up for this'..."

And Brian, in his typical man-of-few-words way, looked me straight in the face and said:

"Yes, I did sign up for this."

Indeed he did. We both signed up in sickness and in health. I pray that if I ever get in a situation where I must serve him to the capacity he served me, I will do it with a fraction of the grace he showed me.

If you're in the throws of Graves' Disease, please remember those around you and acknowledge their struggle too. You may not be able to control the outbursts yet, but you can at least let those who are bearing the brunt of them know that you recognize their challenge as well.

And if you're married, remember - you did sign up for this. Once you begin to get the disease under control, things will improve. I believe you will look back like we do and see the time just made you stronger and more determined to keep your resolve.

After all, it is "'til death do us part."

The Eyes Have It

2010-10-04T15:39:00.007-05:00

If you've been reading this blog for any amount of time, you will know that I am one of the lucky few (note sarcasm) with the eye manifestations for Graves' disease. Thankfully it has only affected one eye and although I would like my facial symmetry back I suppose one "control" eye is better than none. Ha.

I was well aware that undergoing Radioactive Iodine Treatment would aggravate my eye symptoms and likely make them worse. It did. But after some months my eye went back down and has almost returned to normal. I waited for the flare up to pass before going to an opthalmologist who specializes in Graves' Opthalmopathy. I went in late March and the visit was the most thorough eye exam I have ever had in all my (then) 26 years.

The doctor noted I was one of his youngest patients and asked me about the typical symptoms - dry, itchy eyes, light and wind sensitivity, pressure, 'milky' or blurred vision, and pain. He performed a "dry eye" test (boy was it uncomfortable - read about it here) and my eyes watered at an acceptable level. The main thing he and I both were concerned with was the pressure in my eyes: if the pressure gets to high in a bulging eye, it can cause blindness.

He checked the pressure in my eyes and - GLORY BE! - they were fine. Even the affected one was okay. He looked at pictures I had brought showing my eye pre-RAI, post-RAI, and after the bulging had wained, and he agreed that it looked like the RAI had worsened the symptoms for awhile but had then subsided.

He assessed that my "bulging" eye was actually due to lid retraction - to the tune of 1 millimeter. Since the pressure in my eye is fine this appearance is purely cosmetic, and while he could consult with me on surgery, there would be no medical benefit at this point. He also suggested that the eye symptoms could worsen or get better on their own schedule: there is no way to tell what they might do and the eye symptoms fluctuate independently of thyroid levels. According to him, some 15% of those affected by thyroid eye disease get better on their own and mine probably would.

So I decided to take my chances. Yes, I do miss my eyes being the same size in appearance, but at this appointment I was less than a year out from my RAI and 1mm just wasn't enough to warrant losing half my vision for several weeks. It was such a relief to hear that my vision was not being threatened at all for the time being.

The doctor also advised me to use eye drops often to help with dryness. So far the best I have found are these, which have no preservatives and therefore come in individual use vials.

Here are my eyes today (literally today - I took this picture earlier this afternoon). There is certainly a noticeable difference but I think it's nearly imperceptible unless you're looking for it. Also, I note that I desperately need to shape up my eyebrows. Marking that on the to-do list... I am now able to wear my contacts again for extended periods, sometimes even all day.

I'm making sure to document my eyes periodically so I can keep up with their progression and try to pinpoint anything that makes them flare up. I can tell you that lack of sleep and stress (which often go hand in hand) are my two biggest triggers.

If you choose RAI as your treatment option and you have thyroid eye disease as well be sure to ask your doctor about the likelihood of it aggravating those symptoms. They will surely do as my doctor did and prescribe a hefty but quick dose of Prednisone. This will give your eyes the best chance of remaining or returning to normal after RAI. (It will also do all kinds of other fun stuff to you.)

On a related note, I was sitting out on our balcony Sunday reading the paper and enjoying the arrival of Fall in the southeast when to my surprise I see this ad in Sunday's paper:
Hmmm...could eyelid lifts be the next big thing? I guess I'm one step ahead then, with my lid retraction and all.

Coolness.

(Insert eye roll.)

Would-be Mothers with Graves' Disease

2010-09-08T11:02:00.006-05:00

Google alerts delivered this to my inbox today.

In my rudimentary understanding, it appears the mother's hyperthyroidism caused the baby's thyroid to compensate by under producing, making him/her in effect hypothyroid. (This would be one reason doctors suggest Graves' patients of childbearing age induce hypothyroidism instead of trying to control an overactive thyroid, I imagine. Aside from the obvious benefit of hypo being easier to treat.)

A quote from the article by Indian Pediatrics:

"It is recommended that all infants born to mothers with Graves' disease should
not only have both fT4 and TSH measured in the cord blood, but also be monitored serially, even if either of the cord measurements appear normal."

Those of us with Graves' hoping to have biological children need to keep this in mind. I would think even with the mother's induced hypothyroidism it would be beneficial for the child's thyroid to be monitored.

OTC and Natural Meds: A Word of Caution

2010-09-03T10:30:00.010-05:00

It's extremely easy to "forget" you have an autoimmune disorder at times. It's certainly not smart, but it's easy to do.

This week, for example, I have been battling some type of cold/sinus issues and searching for any type of relief I could get. This included digging through all of our over the counter medicines and trying everything I could find to take that might help, irrespective of label warnings.

Bad idea. I know.

Certain things - like iron (which interferes with the absorption of thyroid hormone replacement and therefore must be avoided within four hours of taking replacement therapy) - I know to stay away from. But it's been easy for me to think I'm feeling okay and forget I have to be more cautious than those with normal immune systems.

I'm not sure if it's due to the illness or the medications, but I've been having some classic hyper symptoms this week: sweating (even on the bottoms of my feet), restlessness, and a bad attitude (I believe the medical term is "irritability"). This is unusual because I am very much hypo, undergoing hormone replacement to the tune of 137mcg, and have been thinking I might be low (at least until this week). And I'm as sweet as sugar all the time (*ahem*).

I decided last night after being wide awake at 1a.m., unable to go back to sleep, that I would take something to help me rest. On top of all the other varieties of cold meds I have already put in my system. My common sense evidently left me after the third night of no sleep due to coughing.

Prior to my Graves' diagnosis, melatonin is something I had taken to help me rest. As with so many things I have taken pre-Graves', I figured it would affect me very differently now post-Graves'. So I proceeded with caution.
(When I was sick this spring with bronchitis, I was prescribed hydrocodone cough syrup as I had been a few times before, but this time when I took it I swelled up like Hitch and had to eat benadryl until it went down. Not fun.)

Where were we...melatonin. Here's what I found on the back of the bottle: That says "Do not use melatonin if you have an auto-immune condition, depressive or endocrine disorder..."

Guilty as charged.

I dug around online until I found some information as to why there was a concern for this and was surprised to learn that melatonin is an immunomodulator. They're not sure if it works as a stimulant or depressant, and it might work both ways in different people.

I began to do some research online to see if I could find some information on my specific disorder and melatonin. I came across this information from Elaine Moore, who is a great resource that I am just now discovering. Her site is a wealth of information on Graves' and autoimmune disorders. Her opinion: it's okay to take. After scouring some other discussion boards and websites, I conclude from others' experience that if I was hyper, it would definitely be a no-go. But since I'm hypo, I feel comfortable taking it. (I did take a half of a dose and it did help me go back to sleep.)

This new information also forces me to think about how my lifestyle contributed to my initial flare-up of Graves'. It stands to reason that if melatonin does interact with one's immune system and might in fact stimulate it, that my use of it to sleep might have encouraged my predisposition to Graves' and encouraged my immune system to attack my thyroid. Again, I don't think it was any one single thing that triggered this disorder for me, but more of a lifestyle and building up of many less-than-healthy choices I was making. It's a logical conclusion, in my opinion, that the use of melatonin (combined with my predisposition and other environmental factors) could correlate with my auto-immune disease development.

Bottom line: there's a tendency, at least for me, to think that over-the-counter and natural medications are "safe," but those of us with autoimmune disorders (and who have family histories and predispositions!) need to be extremely careful what we put in our bodies.

Of course the best advice is to always ask your doctor. Just be sure you don't assume (you know what they say about that...) medications are okay to take, even if you think you're healthy or feel fine. Remember that if you have an auto-immune disorder, your body is working differently than normal and therefore must be kept in constant consideration.

Gimme a head with hair, long beautiful hair!

2010-08-31T14:04:00.016-05:00

From the time I was a child, I have had a challenged relationship with my hair. I will refrain from posting any of the pictures from my "awkward years" (you know we all had them), but just know that thick and full are not qualities that make hair friendly with short cuts. I, however, prefer short cuts because I'm all about efficiency and long hair just seemed like too much trouble.

I did grow my hair out very long for my wedding, as you can see here. This picture was taken on our honeymoon. I had scrunched it with some product and let it air dry.

I cut it less than a year after the wedding and Brian still hasn't forgiven me. But that's okay. He doesn't have to figure out what to do with all that hair when you're trying to sleep at night and it's literally wrapping around your neck and trying to strangle you.

Back to the point...I have always had very thick hair. I had to figure out how to make that work in my favor and have come to love my thick hair. It's always been fairly healthy, even though I dye it, and I make every effort to keep it well moisturized. My hair, in general, was satisfactory.

That is until Graves' hit.

I still haven't figured out if it was the radiation, the hormone replacement, or the induced hypothyroidism (or some combination, most likely), but one day my hair just started falling out. The first few weeks I wasn't too concerned - as I mentioned, I have always had thick hair and figured I could stand to lose some - but as it continued, I became more and more concerned.

My hair was dry, brittle, and coming out by the fist fulls. Anytime I would put conditioner in my hair I was pulling out globs of hair. When we stayed with my mother one weekend she went in bathroom after my shower and came out bewildered that I had any hair left on my head. This right here is only about a fourth of the amount I'd lose in the shower when this problem was at its height.

I began to take drastic measures. And I earned a new nickname in the process.

I decided that I must make some major changes if I was going to save my hair. I was uber-gentle when I washed it, I quit wrapping it so tightly in a towel after I got out of the shower, and I committed to brushing it as little as I could throughout the day to preserve as much as possible. One comb through when it was wet, let it air dry (I couldn't dry my hair for over a year due to my heat intolerance and now I couldn't due to it being so frail), and go on my way. I'd brush it right before I got somewhere or had to see someone and let that be it. I also kept my pulling it back to a minimum as I knew that was pulling out hair too.

I present to you what my dad and husband have dubbed "Crazy Hair":

This is the hair combed through and let air dry. My dad constantly tells me I need to brush my hair, and my husband calls me his "Crazy-haired wife." What they have obviously forgotten is that crazy hair is, indeed, a sign of a genius. (Hello? Einstein, anybody?)

Once we got some thyroid "on board" and built up in my system, my hair improved dramatically. It is still much thinner and dryer than it has ever been before, but I have been making a concerted effort to get as much moisture in it as possible and be as gentle as possible with it. I've even gotten and used some tips from some African-American family and friends what will help quench my thirsty, brittle hair.

Once again, Graves tries to hijack my appearance in yet another way. The texture of my hair will probably never be the same. But you know what? As long as it's still in my head (and thankfully the loss has reduced significantly), I'll work with what I got. Booyah."I want it long, straight, curly, fuzzy, snaggy, shaggy, ratty, matty, oily, greasy, fleecy, shining, gleaming, streaming, flaxen, waxen, knotted, polka dotted, twisted, beaded, braided, powdered, flowered and confettied, bangled, tangled, spangled and spaghettied...HAIR!"

Day by Day

2010-08-18T15:27:00.006-05:00

The past few months have been a bit of a roller coaster ride - each day is different and I suppose it will be that way until I find the "magic number" for my thyroid hormone.

The best way I've heard someone describe being low is that you feel like a slug. Interestingly, as a woman, the best indicator I've had of how close to normal I am is my menstrual cycle. I can pretty much judge how close I am by its characteristics since thankfully I've had a very predictable and normal cycle for many years. I was getting too much hormone at one point and had some hyper symptoms return, but once we got my numbers down it improved within a few weeks.

I'm taking the generic of synthroid, levathyroxine. At times I think I should've taken the brand and I've heard from people there's a real difference in it's performance versus the generic, but with the cost factored in we just aren't able to switch me to the brand.

My affected eye has pretty much returned to normal. I think you'd really have to know and be looking for it now to see it. Here is a recent pic (forgive the need to color my hair - did that yesterday. Ha.) I still notice my eye and try to compensate for it when I take pictures, but it's not nearly as bad as it used to be.My weight gain has sort of levelled out, so now I've got to get focused on losing some. I've definitely gained some and between being hypothyroid and my age, it's tough to get it off.

We've moved back closer to our families and it's so nice to have them close by after feeling so isolated dealing with the worst of this disease. I've been taking in as much time as I can with them and it has blessed my spirit so much the past few weeks.

I'm planning to post in more detail about recent doctor's appointments and experiences, so expect those soon.

If you're battling Graves' or any other disease, remember a large part of this is mental - keep your chin up an eyes on the prize.