So since I was sick in January, I have acquired a fair number of medical
professionals that I tend to think of as Team Annie. I have a new GP, a
psychiatrist, a therapist and as of May, a new endocrinologist. It isn't a secret among those close to me, but I have struggled with anxiety and panic attacks for most of my life. In my thirties, it got worse. While in hospital for my evil gallbladder, I requested a psych eval while I was essentially stuck with no place to hide. Kind of a roundabout way to do things, I know, but I suppose desperate times call for desperate measures. All that matters is I finally asked for help. And I am getting help. And I'm no where near better, but the world is a tiny bit less scary than it was for me 6 months ago. I am sure I will talk about this more in the future, but it's some background on how these particular members of Team Annie were involved in this latest chapter of WTF Theatre.
Thirteen years ago I was diagnosed with a genetic disorder called
Congenital Adrenal Hyperplasia. There are different forms of it, if you
have ever heard of it before it's probably been the classic form where girls are born with ambiguous genitalia and the sex of the baby cannot always be determined by looking. It's more than that, though. The classic form can be fatal because it can cause salt-wasting. The non classic form, which I was told that I had, has symptoms like irregular menses, hair loss, weight gain and other
delights. The symptoms are very much like Polycystic Ovarian Syndrome
but PCOS is based in insulin resistance while NCCAH is based on a body
that doesn't make enough of the hormone cortisol and in trying to
stimulate the adrenal glands to make enough, too many other hormones are
produced and things get out of whack.
So I was told I was
essentially infertile on my own, and my husband and I would need genetic
counseling if we did decide to have children with fertility assistance.
CAH can be fatal in infants and children if there is salt-wasting or an
adrenal crisis occurs. I was twenty six years old and had been married
for three years. I grieved. I always wanted a baby, maybe two. My
husband was less certain, I knew he was a fence sitter. But this seemed
to close that door for me. But my husband, I think, was in some way
relieved, he could now freely state that he was positive that he did not
want children. Ever.
For several reasons it was a rough patch for
us at that time. There were growing pains for us. Some typical of young
marriages, some maybe less so. And then we found this out and it seemed
to help us find some common ground again and we worked out some issues
and moved on confident that not having children was the right course for
us, the only course, really, since I was defective.
Fast forward to December 31st, 2012. As I am being triaged in the
emergency room I have to make sure they know I have CAH, because I will
probably need steroid support to keep me from having an adrenal crisis
after vomiting more than I ever thought was possible for one human to
vomit. It is noted in my charts, the next few days were a blur for me
between dehydration and massive amounts of dilaudid for pain control.
Things got more clear after a PICC line was started and I began to get
hydrated for real 48 hours after I was admitted. CAH was not brought up
again and I kept forgetting to ask. I assumed at some point, I was given
steroids.
Seeing my new GP once I was sprung she noticed that I
had not been given steroids, she asked some questions and we focused on
the issues at hand. It kept kind of popping up in the back of my mind.
So after a couple months, I asked my psychiatrist and therapist if it
was possible that my adrenal issues could be affecting my anxiety
levels. Their answers were a resounding YES. So I asked my GP if we
could test that. We did, and holy wow did I open a can of worms. My
results were not what we expected. So she referred me to a new
endocrinologist.. Which made sense anyway, since I am now diabetic and
have a thyroid that has decided to crap out on me as well. So I go. More
blood was drawn. Saliva was collected. Again,the results were not adding
up. He decided on one more test, an ACTH stimulation test, which would
be conclusive once and for all.
It was conclusive, and the
conclusion was that I do not have this genetic disorder. I never did.
The labs all indicate that I have healthy and functional adrenal glands.
My CT scans from pancreatitis were reviewed again to look at my
adrenals glands, no lumps or bumps on them. Healthy. Which is good, do
not get me wrong, one less thing that can kill me? Yeah, I am more than
happy to take that. Bring that shit ON.
But also, I was probably
never infertile. I was never at risk for passing along a fatal
disorder. I had choices that I never thought were going to be available
to me. But I'm not 26 anymore. And my health has taken a serious hit
this year. And my husband is more convinced than ever that he doesn't
want to share his life with children. Just when I am realizing it's
something I might have wanted after all. But if that door is still open
at all, it's closing fast. And there is only one person I would want to
have children with, and he is positive he doesn't want them.
How did that happen? There was a shitload of blood work to get that
diagnosis, it's a fairly straightforward process. It's not really
something that could be accidentally interpreted. And even if it was, I
had follow up labs. I had followups after she began treating me with
steroids. For a year. I was on corticosteroids for a year. For nothing.
Steroids that can impair your insulin response. And that reproductive
endocrinology clinic has since closed down and my records were lost in
one of the floods in my house, and my new doctor could not get ahold of
my original labs to see why I ever would have been misdiagnosed.
So
that's where I am now. I have known this for nearly a week and the
shock of it all still takes my breath away and makes me cry. What I am
most angry about, I think, is that with proper treatment I might not
have ended up diabetic at age 38. That we could have treated my insulin
resistance and I could have implemented lifestyle changes 13 years ago
that would still be benefiting me today. And I also feel like I have
some more grief about choices I never had the chance to make. I am sad
and I am angry. I am so angry.