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Feb
18
2012

Coming out with my illness

Uncategorized | 28 comments

This was me 18 years ago. I was 21-years-old and VERY obsessed with my looks. Yeah, I was a svelte snob. Back then I was a senior in college and more concerned with dating and fun than my health. Part of the secret to my lean legs and arms was that I hardly ate. And I hardly ate because eating made me sick. I also fought fatigue on a daily basis, but I figured it was due to college stress.

Ten years later I delivered my first and only child two months early. Two years after that, my fatigue was much worse. I was taking two to three hour naps daily. I chalked it up to the fact that I had a hyper toddler. But the IBS was worsening, too. By the time my little girl was in preschool, I was sleeping about 12 hours a day. Doctors said I was being lazy, and despite the myriad drugs they crammed down my throat, I became so sick that I thought I was dying. By this time my entire body was covered in rashes, bruises and I’d gained 20 pounds. My neck had also swollen to the point that I choked on my food. Can you believe I still had a hard time convincing doctors something was wrong with me?

Finally, one doctor believed I was sick. She put me on depression drugs because ‘my depression was depressing her’ and sent me to an endocrinologist because she suspected thyroid disease. This endo (who supposedly specializes in the thyroid) said nothing was wrong with me and so did his colleague. I found a new endocrinologist, one with a Harvard medical degree. She had no idea what was wrong.

By this point, I was so sick, I could hardly function. There were days when I’d sleep up to 14 hours. I was too sick to eat much, yet I continued to gain weight. My preschooler spent much of her after-school time playing alone. I was tired, in pain and riddled with guilt. The worst was the fear of dying and leaving my little daughter without a mother. A far cry from the party girl of my youth.

But I mustered enough strength to take my health into my hands and surf the internet. Doctor Google helped me to diagnose my illness. I went to my endo and asked her to test me for Hashimoto’s Thyroid Disease. The test came back positive and she put me on thyroid hormone. It gave me more energy but did little to diminish the debilitating fibro pain. By this point, I was dependent on prescription pain killers to get through each day. This doctor said little to me about diet, vitamins or other hormone levels that generally go hand-in-hand with my disease.

Then I met my friend Alice. She runs a Hashimoto’s support group on Facebook called Hashimoto’s 411. You can also find me there as a moderator. She turned me on to holistic health as a way to treat my disease and introduced me to the book that changed my life, written by Dr. Kharrazian.

I’ve discovered that I am extremely intolerant to the protein gluten, found in most breads and pastas among many other foods. I also have a few more trigger foods that cause pain throughout my body. I had my daughter tested and found out she has a high antibody count against gluten as well. We are both gluten-free with amazing results. My naps are down to about 15 minutes a day. I have switched doctors and see a holistic MD and chiropractors who treat the underlying causes of Hashimoto’s. The weight is slowly coming back off. I am exercising and feeling better than I have in years, but this disease still has taken a toll on my body and robbed me of precious time with my family. I would not wish it on anyone.

During the height of my illness, I’d have a few days or even a few weeks where I felt somewhat normal. This was when I’d write. I wrote Krysta’s Curse during the onset of my decline. This may be why this book is darker than my other YAs. I also wrote a few adult comedies which are published under another pen-name, although these books are not appropriate for my YA audience.  Why did I write them? Well, I’ve always believed that adversity is handled better with laughter.  And believe me, I needed the laughs.

My health journey to hell and then back has helped me grow as a writer and as a human being. It has given me introspection into true human suffering and made me a much better person. I am no longer that silly superficial snob you see in the above picture, but a person who has experienced pain, fear, hope and resurrection.

28 Responses to Coming out with my illness

  1. You are such a brave lady to keep going and not give up. I think your writing is amazing and kudos to you for continuing to follow your dream no matter what. I’m so happy you are feeling better and healthier! You go girl!

  2. Tara, you don’t look like a snob in that picture and you’re just as beautiful today as you were back then. I’m really glad you finally got a diagnosis and some help. You’re a great writer and artist. Keep up the wonderful work!

  3. I salute you, Tara, for never giving up. So many times doctors don’t listen, don’t understand something they can’t see diagnosed on paper. Kudos to you for caring enough about this beautiful life (and child) God gave you, and gave you strength to keep digging until you revealed the cause.

    Many blessings, Keta
    http://ketaskeep.blogspot.com

    • Thanks, Keta. Look, I know there are good docs and bad ones. Luckily, I finally found the good ones, but this disease is very under-diagnosed and very under-treated. I’m just helping to get the word out.

  4. Bravo, Tara. :-)

  5. stay healthy and continue to write. good luck to both!

  6. What a great post.
    I am not allergic to gluten, but two months ago, on a whim, I cut gluten out of my diet.

    Can I tell you….I have more energy? Not kooky wild manic energy (I always had plenty of that) but I don’t start looking forward to bedtime at 8pm. When I’m awake, I’m awake, alert and working. It’s kind of nice.

    Also, my husband says I look thinner, but I’ve only lost about three or four pounds. I do think there’s a certain bloat I don’t have any more.

    And you know, the corn pasta’s not all that bad….

    • Christine, interesting your results on a GF diet. I can’t eat yellow corn. Wahhh. It makes me sick as well. I do eat rice pasta. We’ve found a good one that actually tastes like wheat pasta. There’s a reason most of the Celiac studies are done in Italy. Gluten intolerance is prevalent among people of Italian heritage. If I could only convince my Sicilian family to go GF. So many of them have the IBS, fatigue, fibro and bloated stomachs.

      • Reallyfershizz?

        Because my mom has fibromya-(insert proper spelling) and she gets diarrhea whenever she’s stressed out and a slew of other crap. She said she was tested for celiac and she didn’t have it.

        You know what? I think she’s full of it. I’ve been telling her for years she had it and now, hearing this, I think I should give her a hard time again. Because that’s what she needs. Her daughter on her case about her health….

        • Christine, if your Italian mother is as stubborn as my Italian mother – GOOD LUCK! She told me a doctor told her several years ago she was allergic to wheat. I asked her to clarify his method of testing but she doesn’t remember. She simply told him she refused to give up bread and pasta. Ironic how bread and pasta are really the foundation of so many Italian dishes and many Italians are intolerant to wheat. The Celiac blood panel isn’t always accurate. I tested negative. My Celiac friends told me about EnteroLabs. That’s who we used for my daughter. No needles. It was a stool test by mail. We also did the genetic saliva test which proved she inherited the gluten intolerance gene from me, which also means that I inherited it from one of my parents. I notified all of my family and heard NOTHING back. It’s frustrating. Having Hashimoto’s is enough of a reason to give up gluten. My antibody attacks, which most days made me feel like I had the flu, stopped after I quit eating gluten.

  7. Tara, I’m so thrilled for you that you FINALLY found the medical treatment you needed! The medical community and the accompanying bureaucracy in this country are such nightmares! My cancer was diagnosed fairly quickly and I’ve been fortunate enough to have wonderful doctors and nurses on my treatment team; however, I’ve gone through months of bureaucratic BS during which time my treatment was delayed.

    Hopefully, some day, we will be successful in surmounting all of the current problems in our “system” of health care. Best to you in your continued R&R (‘riting and recuperation) ;) I know MY writing has been a Godsend toward keeping my sanity!

    Candice

    • Candice, I hope your cancer never comes back. I am so glad that you found the right treatment. That’s what I thought I had for quite some time. I had several nodules on my thyroid glad, but the biopsies came back negative. You are right about the bureaucracy. We finally dropped our old insurance plan and pay more, but now I go where I want. It’s so liberating. I’m also a very lucky gal to have a supportive husband who has paid for a lot of my medical expenses because I was too sick to work.

  8. Inspiring testimony! What a joy to read. BRAVO!

    -a friend at Hashimoto 411

    • Hi, Lynn and welcome friend. You of all people understand how painful and debilitating this disease can be. It’s a shame that mainstream medical still doesn’t recognize the many underlying issues that accompany this disease.
      I think it’s so important that writers with Hashimoto’s come out and educate the public using the power of the written word.

  9. This is an awesome post, Tara. Thank you for sharing. It’s ridiculous in this day and age that we often have to come up with our own diagnosis before we get the treatment we need. I’m sure you’re helping a lot of people in the support group who would otherwise be suffering as you once did. Bravo!

    • Linda, I’d like to think I’m helping. It’s really a give-take group. I’ve learned so much from them as well. I think much of it boils down to the old adage, “You are what you eat.”

  10. Hashimoto’s Thyroiditis is one of over 100 autoimmune disorders. Even though these disorders have been known for quite a while, many doctors are still unaware of their existence. It is really sad to know there are many people like you who suffer needlessly because of this.
    I have an autoimmune blood disease called ITP and I wrote a book about it hoping to raise awareness about this unknown but terrible disease. Thank you for writing this and I am glad you found a support group. It really helps to know you are not alone.

  11. Holistic cures are often the best. Glad you found out what was wrong and the help you were searching for.

  12. As I read your post, I relived my own journey with severe fibromyalgia which started 12 years ago. Unless you’ve walked the path, it’s hard to understand the strength required to fight against a chronic illness to have a normal life, much less reach personal goals. I’m so proud of you and your success in regaining your health.

  13. Wow, Tara. I’m glad to hear that you’ve adjusted your diet and your doctors are now treating you properly. Sorry you had to suffer with this disease for so long while doctors treated the symptoms instead of the source, though :(

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