I’ve been meaning to post an update for a while now.
For those of you just tuning in, my crazy journey began
about two years ago with pretty serious unexplained weight gain (I’ve gained
more than 50 lbs.), along with several other health things, like I was exhausted all the time. This led me to see a
doctor, then I was referred to a specialist, then I had some major health
insurance woes, then I was diagnosed with a non-cancerous pituitary tumor, then
I finally got the right insurance that took affect in January of this year.
I’ve done multiple rounds of tests over the last two years that make them think
that I have something called Cushing’s Disease, an endocrine disorder that
means that my body is producing too much Cortisol. Cortisol is responsible for
fight or flight—so my body constantly stores any calorie as fat because it’s
afraid I’m going to starve, and also I’m always exhausted because I’m
constantly revved up like I’m in flight mode. It also includes things like body acne. It's really a treat, let me tell you.
Here’s the latest:
Last time I reported that the doctor needed me to stop taking one
medication and then re-take a urine test. It came back with the same results
that I had while on the meds, indicating that the issue has nothing to do with
said medication.
When my doctor called to give me those results she told me
that they would schedule the more invasive test, and that I had been the topic
of discussion at their monthly conference. Apparently, the whole group of
specialists and surgeons and everyone involved in the pituitary clinic at the
hospital get together and talk about the crazy cases once a month. I have it on
good authority that for me to be their topic apparently means I’m famous. I will happily sign autographs.
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| I'm excited to go get my head examined! |
It took a few weeks to get the test scheduled, and I finally
had my test on Wednesday, which was yesterday. It took pretty much all day. Here’s
how I understand that it works: They sedated me, and then inserted a catheter
into my veins and took fluids from around the tumor site. Then, they injected something
else in the pituitary gland (in my brain, where the tumor is) and took more
fluids. This will tell them for sure if the pituitary tumor is causing all of
the cortisol issues in my body, or if there is some anomaly elsewhere.
The doctor performing the test was this cute old man in his late 60’s, and he
looked like the dad in “Bread and Jam for Francis,” which was one of my
favorite children’s books about a family of badgers. As usual, the doctor told
me after the test that I had “weird anatomy” in my brain. I’m always the rare
case that they’re like, “He-ey, I’ve never SEEN
this before! Do you mind if I get my med student/colleague/mother-in-law in
here to take a look at this?” I guess there’s one part that usually only takes
seven minutes and it took him 32. The whole test part took about two-ish hours
and then I had to be in recovery for four-ish hours. I had to have a
“responsible adult” pick me up, so Ellie was my hero as usual. I think that
they asked her things like, “Do you have a good job? Do you pay your taxes?
Have you kept your dog alive? Do you make your bed?” and stuff like that to
make sure she is responsible. It’s a good thing Ellie was there because I was
pretty out of it. I don’t remember much of recovery or of the rest of the
afternoon. The only part that I really remember is asking Dr. Francis’ Dad if I
could see what it looked like inside my brain, and he texted me photos. It’s
pretty cool.
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| Inside my brain from the side (that's my cartilage piercing in my right ear that you see in the photo). |
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| Inside my brain from the center. My nostrils look like eyes on a scary moth creature. |
I’m pretty sore today, and I have a crazy headache. But, I
have headaches all the time so there’s no telling if this is from the test or
just a stupid headache. My guts do feel a little bit like someone tried to drive
something up to my brain via my veins.
Mostly I’m just stoked to finally be close to getting some
real answers. I’ll keep you posted!
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| Father, in "Bread and Jam for Francis" |
