Trust your own "gut" esp when its telling you something about you

I have not been healthy since becoming pregnant in 2002.  I loved being pregnant but it didn't love me.  I had a "normal, healthy" pregnancy but I was literally ill every single day.  I'll spare you the details.  But I couldn't have been happier.  I figured "this too shall pass".  I mean it could only last a few more months right? :)  But after my son was born I never got to feeling better.  All the doctors and well meaning friends kept reminding me that it took my body all that time to prepare for birth and it would take just as long to "get back to normal" if not longer.  I think most of the world has translated the pregnancy weight into being a more overall metaphor for post-pregnancy health.  But it really isn't true.  I should have persisted and insisted someone listen to me about what was wrong.

I spent all of 2003 just trying to make it through one more day.  I could write an entire blog on how horrible I felt, how sad I felt because I thought I was missing so much of my son's early life.  But I don't really want to dwell on the negative or describe it.  But thrown in there was a trip to the hospital for an odd infection and an emergency appendectomy.

2004 started out too much like 2003.  But a little past the mid-year I finally just hit the wall.  My body couldn't keep on, my mind couldn't keep up.  All that was left was my heart and my love for my son.  "Daily living" got put on hold.  I just made it to work each day and home.  My family helped me raise and care for my son making sure there was enough of me left over each day to make sure he knew I loved him.  Everything else in my life literally fell apart and I really didn't care.  I simply didn't have the energy or strength to care.

People kept asking "Why haven't you seen a doctor".  I wanted to laugh but couldn't be bothered.  I kept returning to the doc all through 2003, part of 2004 only to be told I was tired and stressed and there was nothing they could do for me, that I needed to get some rest, get some exercise.  In my case, it was the old frog in boiling water analogy.  I started early telling the docs something wasn't right but nothing was ever THAT different from the last time I was there.  I was the frog put in the pot before the heat was turned on.  By mid 2004 I was boiled.  It had been long enough between doctor appointments that NOW someone noticed my racing heart, shakes, erratic bp, huge weight loss, total weakness and other small signs.  After a lot of searching type medical tests one finally hit as a problem - I showed up as hyperthryoid.  They put me on something to lower my thyroid hormones and scheduled more tests over the next few months.  MONTHS.   Finally, once all was complete I was suspected of having Grave's Disease and referred to a specialist. 

Hallelujiah!  I wasn't a hypochondriac.  What was wrong with me had a name and someone was finally going to help me!

(I have to pause here to let out the disgusted huffs, maniac giggles and hold back the tears)

The specialist I was referred to said the anti-thyroid stuff and the bp lowering meds weren't working.  I needed a different treatment.  Not that my doc did anything wrong trying what he did, kept me functioning through the months of tests, but I couldn't keep following this treatment or eventually my body would burn out.  She wanted right that appointment to give me a pill to irradiate and kill (hopefully most of) my thyroid.  I was in no shape to be making decisions so I left and that seemed to irritate her.  My concerns were 1) I had a HUGE goiter, it wouldn't go away with the radiation treatment, 2) I would have to avoid my son for something like 10 days and besides my parents assisting me, I was his world.

I drove the long way home in tears thinking "I can't do it".  But something was telling me "it isn't 'can't' it is 'won't'".  I just didn't WANT this, deep down my gut was saying this was wrong.

Quite literally serendipity saved me.  My mother, having a scare with possible breast cancer and not liking the treatment she received locally, travelled to Pittsburgh to Magee's Womens Hospital.  While wow'ing with my father over the difference in atmosphere and treatment in between the comings and goings of her practitioners, they started to notice things.  One was a pamphlet detailing symptoms of a disease that sounded exactly like something my sister had been going through, undiagnosed and as miserable as I but totally different than I.  My parents totally forgot why they were there as they hunted down anyone who could explain "Lupus" to them.  It was the second time they had heard "autoimmune disease", my Grave's being the first.  My mother spent the rest of the day down there trying to find out if someone at Magee's could also help with Grave's.

My parents returned, joyous, full of news and totally forgetting the worry of why they were even there.  Later we learned my mother was fine.  Not a thing wrong, just a bad test.

My sister got her wonderful Lupus specialists.  If you can't read the emotion behind that read it like you would if you were announcing to everyone you just won the lottery.

Magee's however, couldn't help me.  BUT, they did tell me I should be talking to the Endocrinology clinic in Oakland.

I immediately thought "ooooo yah, lets drive 2 hours so someone can mess me up and make me miserable".  I've never enjoyed being proven wrong so much :)  This specialist explained everything in detail, she immediately saw I had Thyroid Eye Disease or TED and that irradiating my thyroid could WORSEN that and I shouldn't have that.  She monkeyed with my meds, begged me to check into the hospital fearing Thyroid Storm I was that bad.  It was only a few short weeks til I got to meet with the surgeon who would remove my thyroid so I could be spared radiation, get rid of the goiter that was literally choking the life out of me and be with my son within a couple days instead of weeks.

:)  Short end to a long story?  The surgery was apparently gruesome :)  My surgeons were there for hours when it was to be an hour or two, because the mass of my thyroid was so large, so extensive and so bloody.  I recovered really well I thought.  There were two others in my position that day who were only having parts of their thyroid removed and I think I bounced back faster than they did.

The stuff I found cool afterwards, about how something so small could go so wrong, how the delicate balance of hormones, minerals and other things in your body aren't merely things you need "to be healthy" or the epitome of health but just to literally survive.  Parathyroids getting nicked in surgery (I lost a whole one that was consumed by my thyroid) throw off your calcium.  So you would just think of osteoporosis and watch and protect against right?  No, there were a million things like muscle spasms/ contractions to where I couldn't even straighten out my fingers, hands or elbows, because one tiny pill would be off.

What really amazed me was after all this, I still had that closeness with my body, I could still feel when something was "off" way before a symptom set in, way before it was detectable by medical tests.  And why I was really lucky?  I had an endocrinologist who respected my insights just as much as her scientific tests. 

Feeling pretty good now (not like my younger days but at least like pre-pregnancy).  Been through a lot since then.  Still have somethings to conquer.  But my biggest lesson learned, my most prized piece of treasure from the entire experience?  The confidence to once again, trust my gut when it is trying to tell me something.

I've spent a little time since then giving back for all this.  Going back to the bb at the NGDF, just being vocal about autoimmune diseases and Grave's.  In one professional group I belong to out of maybe 100 people I found over 20 women with AiDs (my own short hand for autoimmune diseases, not to be confused with AIDS by saying A.I.D.s instead of AIDS).  All were astounded to see so many of their friends affected but differently.  People simply don't discuss this stuff.  I also spend a lot of time collecting resources, links or whatever and passing them on to everyone I know who can use them.  Most of the beginning of this year, well after being done with the Grave's (expcept for the TEDs) and already having a pretty good handle on Celiacs (later story ;) I was still reading dozens of texts and books on Grave's Disease, AiDs and sharing.  Because it isn't until after you've survived it that you realize you just can't comprehend OR manage while living it.  There has to be help.

So if you know anyone with an autoimmune disease or someone suffering but undiagnosed, please, help them, think for and with them.  Or at least send them to me :)