Thankful that I know…

When you are suffering for a long time and don’t know what’s wrong, when doctors look at you like it’s all in your head (and some even tell you that), when it takes years and still no one knows…it’s so nice to be diagnosed.

art by Aquatic Fishy at Deviant Art.com

Some of my illnesses were diagnosed fairly quickly, and still some things are still pretty vague. (chronic hip and pelvic pain – ummm, why?)

I know it may sound weird but I was so happy when I found out that I had a wheat allergy, gluten intolerance, hypothyroidism, Meniere’s, hypoglycemia, a B12 deficiency, a Vitamin D deficiency, and finally and most recently fructose intolerance.

Each of these diagnosis took a long time to discover.  Especially the wheat allergy (gluten intolerance) and Meniere’s.

For years I was sick.  I saw a note in my medical records one time from a doctor that said, “This patient comes in with a laundry list of complaints….”  I was shuffled from doctor to doctor.  I was told I had Fibromyalgia, chronic fatigue, and IBS.  I had to learn to live with it, and I did for years.  I even started a local Fibromyalgia support group.  (I’m so very thankful for one very special friend that came from that group.  You’re great Lisa!!)  But I never stopped looking for an answer, or something that could help.

Finally, I was reading about food allergies and asked my doctor to test me.  Come to find out I have a wheat allergy.  Thank Goodness, I found out.  I stopped eating wheat immediately, and started feeling so much better within weeks.  Then I read about how many people can not tolerate gluten, and the symptoms for celiac disease.  A lot of these symptoms fit me, so I decided to stop eating gluten, and it was like a light switch came on in my life.  I no longer felt like I had the flu all the time, or that I needed to sleep most of the time.  I had a new lease on life.  I’m so grateful.

I had vertigo attacks on and off for years, with a full feeling in my ear and a constant ringing, but no one could tell me why.  One night after having vertigo and throwing up over 8 hours my fiance (now my husband) took me to the emergency room.  The doctor there told me that he thought I may have something wrong with my ears.  Perhaps the crystals that some people get, or something else that causes vertigo…he even mentioned the possibility of Meniere’s.  I loved this doctor.  I was so grateful that he believed that there was something wrong with me, and I wasn’t just getting food poisoning over and over.  (yes, that’s what I had been told.)  So I went to an ENT, and he said I have Meniere’s Disease.  I was so thankful to know something.  Am I happy that I have Meniere’s? NO.  But I am just so thankful that I have a diagnosis.

I’m so happy to be involved in the research going on at Duke to find out if an imbalance of Cerebral Spinal Fluid (CSF) may be one of the causes for vestibular vertigo in some Meniere’s and Ramsey Hunt Syndrome patients.  I was so very happy to find out that I had CSF leaks and they could patch them. My life is a new again.  (no vertigo for over 2 months now!)

Most recently, after 7 months of chronic, almost daily, diarrhea; and a battery of tests, I am so thankful to find out that I have Dietary Fructose Intolerance (or Fructose Malabsorption).  Yes, it makes eating much more difficult, but I’m already feeling better after just one week.  What a difference knowing can make.

Am I thrilled to have so many chronic illnesses?  Of course not.  But I’m so thankful that I know.

I’m also thankful for all that I’ve learned from having chronic illnesses.  I’ve grown so much as a person.  But that story is for another day.

Thank you all for supporting me through all of time trials.  Isn’t it great to know?

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11 thoughts on “Thankful that I know…

  1. Putting a name on something really does make a big difference! It means that you were right in thinking something was wrong; it makes you the member of a community you can participate in and learn from; it stops you from thinking you’ve gone nuts; it lets you tell folks who need to know what to expect.
    I’m glad you’ve found the names you were looking for. I’ve been trying the various elimination diets, but as yet I haven’t hit on the exact combination that releaves symptoms the way you were able to begin to feel better when you eliminated certain things from your diet.
    Thanks for sharing what you are thankful for. You have stared down great challenges with your strength of will and determination.

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  2. Wendy, you’re so awesome for sharing with us all. Not only have your trials allowed you to grow to the person you are today, but you help everyone who reads your posts to grow, too. I hope to meet you someday!

    Angelea

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    • thank you so much!
      I’d love to meet you too. I think I should take a vacation and travel around and meet the friends I’ve made from this blog. Wouldn’t it be great if we could all meet somewhere?

      wendy

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  3. Yes – knowing is better even if it´s not really what you want. I believe that the uncertinty in not knowing is so stressfull that it can make your Menières worse, like any stress can.
    Thank you for sharing!
    Susanna

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  4. It is great to know!

    It does sound strange to be thankful for all of this but, finding out what was wrong with me not only was one of the happiest days of my life but brought a lot of relief as well. We so badly want to do something to help ourselves feel better and when we go for such a long time not knowing, we sometimes have to start defending ourselves and fight the defeatist attitudes from others and sometimes from ourselves.

    And you’re right when you say “What a difference knowing can make”. I’m so happy you’ve been able to get answers.

    Maureen

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  5. Kudos to you for keeping on those doctors to find our what was going on in your body. Even though you know what is wrong, it is hard to keep up with eating right and doing everything healthy for your body. Keep it up Girl!
    mo

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  6. What someone else wrote – knowing is half the battle, indeed.

    I remember such relief that one daily pill would nip all the symptoms of hypothyroidism in the bud. Undiagnosed for several years, that last year sucked, to be honest. I can’t imagine having several undiagnosed conditions like you have had.

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  7. Yes, Wendy! I have always wanted to see N.Carolina and the East Coast. On the other hand, I live in San Diego which, of course, is a great place to vacation. So one of these days one of us just might be in the other’s area. Ya never know. 🙂
    Angelea

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  8. Hi there! I have so many of the same ailments (what I call them). I think there is some kind of allergies-intolerance-meniere’s-arthritis syndrome that some of us are suffering from (environmental perhaps?). Stay strong!

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    • Kim,
      Well this diagnosis was a while back…but I think I’ve finally gotten it under control….Yay!
      I have found many people with chronic illnesses often have many. Possibly we were hit with environmental factors, I think I was hit with a lot of antibiotics young, and things like that can really mess up your system.
      The Meniere’s….well…who knows where that guy came from, if they could figure that out they may be able to fix it huh? I had so many ear infections I do wonder if I was just destined to have something wrong with my ears.

      I have to say, I love my life.
      I had a hard time doing so for a long time, but I really am happy now.
      I have a lot of “ailments” but I live in this moment, this is who I am.

      you too stay strong!!
      come by any time….I’d love to hear more of your story!

      Like

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