No longer just a 'possibility' of progress...

In my last post I mentioned finally seeing a good Endocrinologist.  One who, at our first meeting, based on my history alone said "I'll be stunned if it isn't CAH."

Monday October 22nd came and found me once again sitting down with my new Endo after tests she ordered. I was a nervous wreck, the night before I was in the shower sobbing, and then on the phone with my sister terrified that the tests would come back negative. I mean really, who in their right mind wishes they were going to be officially diagnosed with a birth defect? But that's just what I was hoping. Negative results would mean that I didn't have CAH and we'd be back to "I have no idea what is wrong with you."  Lynne did a wonderful job of helping me calm down, and reminded me that it wasn't just my Endo that thought it was CAH as Lynne and I had spent time researching it and comparing notes with my life.

The fear however was still there.  All my life I was so used to hearing things from doctors like "Well given everything you've been living with, I'm stunned you're even alive.  But we have no idea what's wrong with you."  I was terrified Monday was going to bring another "Well clearly you have health issues, but we still have no idea what's wrong with you."

I really need not have worried, because my new Endo, well she was not the least bit stunned. I do in fact have Congenital Adrenal Hyperplasia (CA) and have had it since birth.  Thus Congenital.  So Monday, after a lifetime of suffering, I started on treatment for it.  One of the many crushing symptoms of it was an inability to sleep in any way that was really healthy.  It was this, and the weight problems I have that finally had me at the Endo's since my primary care had no clue.  She's a wonderful doctor, but the most recent in a long line of Doctors that had marveled at the fact that I was alive at all.  She suggested the new Endo.  I owe that woman a big hug at the very least.

So, I started on new meds Monday.  Wednesday night I went to bed, still not having noticed a difference in my sleep behavior hoping it would change soon.  Nine hours later I awoke to the sun shining in my bedroom and no idea what had happened.  Nine hours of solid sleep was a miracle for me. A major one! Had a spot of breakfast and my morning meds (which include the new ones for CAH) and then took a 45 minute nap!  Not content, and worried this was a fluke, I went to bed Thursday night, hoping the new sleep would last. I woke up once for breakfast and pills and again took a short nap.  Almost 12 hours of sleep waking up briefly only once. Friday night, went to sleep, rose for breakfast and pills and then back to sleep.  10 hours last night.

God willing it shall continue!  And as I understand things, it should.

There are other signs that I will not bore you with that also indicate real progress here.  So it's not longer a 'possibility' of progress here, it is actual progress. And I shall be eternally grateful for the change this diagnosis, and treatment has brought to my life.  My whole life I've been waiting for this.  The new treatment however will do nothing to change my salt issues, so I'm still going to be consuming staggering amounts of salt.  I can live with that!

A possibility of progress. . .

I finally managed to get to a new Endo this month.  My GP has wanted me to go now for years. But it's just not been something I was able to handle financially, or emotionally.

In July, I reached the point where I felt confident this was something I could manage all the way around, and my own research had led me to some conclusions that could explain so much about my life, my medical history, and health issues I've been dealing with, many of them for my entire life.

Irony of ironies, having only just found my way to the information myself, sitting down with an Endo and describing all the minor, but life long issues we've never fully been able to deal with, she said "I'll be stunned if it isn't CAH."  I didn't lead her to it, just told her what I've been dealing with for so long. To hear her reach the same conclusion without even suggesting it, well it was at once empowering as it was frightening.

CAH is Congenital Adrenal Hyperplasia.  Over simplified, it means, that at some point during pregnancy, something didn't quite go right, and I was born with a messed up body.  Depending on it's severity, it can kill outright, usually within the first few weeks of life, or leave one with a lifetime of problems.

You can figure out which one I got.

Yes, a flash picture of salt.

One of the biggest indicators of this has been a series of jokes with my family and friends, and instructions from my childhood doctor.  You see most people need to watch their salt intake to prevent them from getting too much and risking health problems.  A fairly normal, healthy diet and you'll get just enough salt to do fine.  For my whole life, I've had to consume frankly astonishing amounts of salt.  Even to this day I'm refilling the salt shaker on the table once a month or so, and I'm the only one that lives here.  So to the right of course is more than a pound of salt, and in most houses this will last more than a year. In my house, I go through three pounds a year at least.  If I don't, I get sick.  My blood work shows as being off, which of course in the worst case, means dehydration and IVs.  This is just not exactly normal. It's the variant of CAH known as "Salt Wasting" and the one that usually kills in the first weeks of life.  Simply put, it means I go through salt way quicker than most people, and have to constantly replenish it. My childhood doctor told my parents that "for whatever reason" my body goes through salt much quicker and that not only was it okay for me eat lots of it, that I actually should.  And of course nothing crazier for parents to see than their child hit a salt craving and watch as I'd just pour salt into my hand and lick it up.  Over time, that hasn't changed at all.  Though now when I get hit with a salt craving, I'll dive into a jar of dill pickles and not come out until it's empty, juice and all.

Tomorrow early I'll be checking into the hospital as the spend time running tests on my blood. It promises to be great fun, if you like being stuck with needles as the take blood out of you, and inject stuff in.

Once they release me, a few weeks later, I'll have the results and another meeting with the Endo.

She's assured me, that if this diagnosis is correct and confirmed, it's treatable and I can live a normal healthy life.  But the upside to all this is that many of the health issues that I'm taking meds for, well they probably won't need medication before to long, and I'll be able to shed weight again with proper diet and exercise.  Which in the last seven some years hasn't been working.  I'll be thrilled to get rid of this extra weight, and be taking less meds.  But eventually it's going to mean buying new clothes, but fitting back into my old jeans.  I look forward to that part.  So there's a possibility of progress on the wind, and of course major health benefits, including but not limited to being able to sleep through the night for the first time in years.  That will be awesome!

Since the meeting with the Endo I've been running the stages of grief. And just in time for my day with the leeches (kidding folks) I've made some kind of peace with it I think.  This is a battle in one form or another I've been fighting most of my life and my father in particular always chalked it up to me being crazy, which meant more head doctors than time with someone who could really help.  Yes, without question CAH causes moodiness, depression and plenty of other problems as your body tried to keep you going as your electrolyte levels and hormones swing madly. But it doesn't mean you're crazy. Feeling like I've spent my life fighting a monster that really was under the bed that everyone said was all in my head?  Well it's depressing and feels like a life, not exactly wasted, but stolen from me once again.  Thus the stages of grief.

In the end, it's not what was, or could have been that really engages me here, it's a possibility of progress.