What The Hell Is Wrong With You? Part II

Recap from Part I:  It's 2000.  I've just had a baby & then I develop a little skin condition.  Turns out the skin condition is an autoimmune disorder.  I don't know that yet though.  I'm starting to have some other troubles & I'm wondering what is wrong with my body.

The new troubles were sorta' vague, but definitely there.  My tummy was a little uncomfortable after some meals and I was having a bit of difficulty with "regularity."  BTW, I don't really want to write a love letter to the whole wide web-iverse about my bowel movements, but digestive disorders, like Celiac, do tend to come with this sort of info.  The story must be told!  The more of us getting comfortable with this kind of TMI, the more of us that can get help, right??

A long time passed and I didn't really take too much action on my troubles, but then I started getting nauseous pretty often.  I knew there was not another little bun in my oven (my oven was not in the baking biz), so the horrible lingering vomit feeling got me more worried.  I decided to see a doctor again.  I was told I had Irritable Bowel Syndrome.  This was probably the first of my many misdiagnosis adventures on my way to learning I had Celiac Disease.

According to my Celiac Specialist, Dr. Alessio Fasano (this guy is the leading Celiac researcher in the world & pretty much a rock-star in my circles), 5-15% of Celiacs are originally misdiagnosed with IBS.  That's sorta' a big problem, 'cause unlike IBS, Celiac Disease is doing very concrete and serious damage to the intestines as long as you go on ingesting gluten.  Obviously, this means that the sooner you get diagnosed the better.

So I thought, "Okay, I've got IBS, I'm not going to die anyway."  This approach went pretty well for a long time.  Most of my symptoms seemed to disappear.  I managed to juggle a rather stressful period of my life, without any major health impacts.  I went to college at night or during the day (depending on the particular semester) and worked full-time at night or during the day (depending on the particular job) and cared for my quickly growing toddler on my own.  Money & time were both very tight, but I just continued on my way.  Stress can be a very serious threat when you have autoimmune disorders, so it is a little surprising that I walked through that period without more acute health problems.

Then in 2005 I met an incredible man.  We fell in love at first sight & decided to move my daughter & I to California to be with him while he completed a master's degree.  The move proved to be the kind of stress that would tip the scales in favor of autoimmunity (after all I was leaving my family & support network as a single parent & taking my child into the unknown).  My skin condition flared and I had more severe pain with it than I had ever had before.  I saw new doctors & learned that my condition was autoimmune in nature.  I again used powerful steriod creams to get the condition under control.

My emotional life was also off kilter.  My amazing new relationship had led to a very happy marriage in just under a year.  I had a good job and we had exciting plans for our future, despite all that I struggled with some depressive dips and had some very tearful & insecure moments . . . almost like something else was steering my emotional ship.  I chalked it up to all the enormous change & berated myself.  My anxiousness worsened.

Then I started having strange heart palpitations.  My heart would suddenly beat like crazy or beat hard right up into my throat.  At first I thought I was imagining it, then I got frightened.  I told myself to just calm down.  It didn't stop.  I told my husband & we saw a new doctor, who referred me to a cardiologist.  He did the thorough run down & told me in the end that all was well, but maybe I should watch my caffeine intake and avoid medicines like Sudafed.  I knew that was not the answer, but wasn't sure what to do next.  I tried to just accept my "funny" heart beats.  "What the hell is wrong with you anyway?" came the voice in my head.

I was a young newly wed.  I lived in one of the most beautiful regions of the U.S.  There was delicious wines at our fingertips, spectacular hiking, & gorgeous beaches.  My daughter was happy & healthy & deeply bonded with my new husband.  He was handsome, hard-working, & completely committed to me & our new family.   There were many days that I couldn't seem to "rally" though.  Something was wrong, but I could not put my finger on it & when I did venture into a doctor's office, the answers there seemed to mostly be in the vein of "quit worrying."  I felt awful about myself.  Why couldn't I be more happy & energetic?  This should be some of the most fulfilling years of my life.  Was this all just in my head?

I didn't know it yet, but some of the most heartbreaking, painful moments of my life were just around the bend.  What if autoimmunity meant you couldn't have a baby?          

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2 thoughts on “What The Hell Is Wrong With You? Part II

  1. Angie, OMG I am so with you on all of this. I'm crying! I can't believe someone else has struggled as I have. I am so incredibly tired of feeling like crap. I have so many of the same symptoms that you've had. I haven't had children, but have suffered major PTSD after losing 3 of my immediate family members in March of 2000. I have endometriosis and was diagnosed with osteoperosis and osteopenia at 24 years old! Unbelievable. I went through the vomiting stage after my brother passed in 2008. It took nearly 2 years for that to quit. Thank you so much for sharing this story. TMI it up!!! It's going to help others.
    Leah 🙂

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