"Write drunk. Edit sober."
Ernest Hemingway once said that. Although I think it is excellent advice, I've decided against it for now...I did write a blog the other night but sober me decided that you probably DON'T want to hear about the life cycle of cane toads which in fact is probably one of my favorite topics to talk about. Seriously, don't get me started. You'll roll your eyes and ask how and why I know so much. Then I'll stop you and say something like "But for real, they are poisonous at every stage of their life cycle and when they want to mate, the males hook their 'thumbs' into the female and ride on her back until she's ready to lay eggs. Remind you of an ex boyfriend? Eh? Ehhh?" :) (Okay so that was inappropriate...but funny, no?)
These past few months after my miscarriage have been...disheartening. It's been an absolute roller coaster of feelings that make me want to check myself into a looney bin so I feel normal. So. Many. Feelings.
After my miscarriage, the doctor suggested I have a follow up appointment so we could discuss in better depth why my body spontaneously decided that I shouldn't be pregnant. My mother told me I'd go through all the stages of grief and boy was she right. There was the anger, sadness, bargaining and all the other things and then acceptance. But the acceptance was only based on the fact that we could start trying again.
I had seen quite a few doctors previously...at the end of each appointment, in laymen terms was "You're not sick, you're fine." "Your levels are perfectly normal." My previous doctor, prior to my current one made me second guess all of my symptoms.
"I've gained a lot of weight and I don't eat terribly. I'm moderately active but I just keep gaining."
"You should see weight management and get a nutritionist."
"I'm so tired all of the time, I hardly have energy to function and my brain doesn't work right. It's fuzzy all of the time and I have a hard time remembering things."
"Maybe you're depressed. I want you to see a stress management counselor."
"My husband and I have been trying for 2 years to have a baby. Something isn't right. It shouldn't be this hard."
"It sounds like you're not trying hard enough." - To be fair, this wasn't the last doctor I saw...this was the OBGYN who made me feel like I was two inches tall after that comment. We've been trying for almost 4 years now.
Pretty fucking mortifying, right?
When I found out I was pregnant, I cried all day. I was in shock. I wanted to be happy but I didn't think it was possible. I spoke to my doctor who I'll refer to as Dr. R from now on. He tried calming my nerves, saying a lot of women feel this way. Then he upped my dosage of thyroid medication. I briefly mentioned that it's not my thyroid that doesn't work...it's my pituitary gland. That's what the endocrinologist told me 2 years ago.
Fast forward to my follow up after the big M. Dr. R informed me he's reviewed all of my charts and he thinks he's found my problem. And because of it, I won't be able to carry a baby until it's managed. I'll continue to miscarry until we figure out how to fix it.
The funny thing about pituitary glands is that they run your whole body when it comes to hormones including how often you pee, hair, reproductive organs...all of that. And also your thyroid. It also supplies your unborn child with all the hormones they will need to form their own endocrine system. If your body doesn't make enough for you, it won't make enough for baby and can either cause birth defects or your body realizes the baby isn't getting enough and aborts the fetus...as it was with my case.
Dr. R suggested an MRI to see if we could figure out what was causing the disturbance. It could be an empty sella (google it if you want, too lazy to describe), isolated incident (meaning my pituitary gland sucks...which it does but isn't the problem) or a benign pituitary tumor (which could easily be removed via my nasal cavity).
I prepared myself for all three of these things over the course of 2 months. Amping myself up to be positive despite whichever of the three it was. I could handle it, we can fix it. We can do something.
During the MRI, I had a vast mix of emotions. Mostly three of them: being thankful this was finally getting done, being upset I didn't ask the doctor for Valium because I'm claustrophobic and last but not least; trying to convince myself that I didn't piss my pants after they gave me the IV...which my mother told me would happen but I forgot.
I was pretty sure I peed myself from stress. But as luck would have it, I did not, so that was pleasant to discover...it was just a fantastic side effect of the dye they used.
I prepared myself for an answer. I waited to hear if my sella was empty or if I had some sort of benign tumor.
I did not expect the answer I got.
"From the MRI, it looks as though you have lymphocytic hypophysitis. It's a very rare autoimmune disorder that makes your pituitary stem inflamed."
So rare in fact that my endocrinologist has only seen one other case and the only thing I can find on Doctor Google is medical case studies with so much jargon and numbers that I feel equally as confused when Zach talks about his military stuff. Awesome.
As of right now, we upped my meds even more, gave me some new ones and I feel back to my old self. Ornery, obnoxious, energetic and the scale is going down. I feel like a million bucks. I no longer feel the need to sleep for 12 hours, I can get up at a decent time. I'm a lot nicer in the mornings according to Zach. I also remember things now (sometimes).
Silver lining I suppose. I'm not dying so that's nice. It could be worse. It's not affecting my eyesight...I'm just naturally clumsy.
Still, it was a hard pill to swallow. You take care of your body, feed it, exercise and are not a full blown alcoholic...but yet it still fails you. You take vitamins and don't drink soda (that often) but it still doesn't want to work. You stay away from the things that don't make you feel good like junk food and pasta (my favorite) but you still feel like shit. It makes me feel as though I'm playing the game of my life (which I suppose I kind of am) and I score the winning point...then lose it based on a technicality or a replay that shows that I was a mere quarter of an inch from the end zone. Defeated. If I looked the way I felt on the inside...I'd have two black eyes and a broken nose.
Anyways.
Bottom line, if you feel like something is wrong and no one is listening...be your own advocate. Break up with your doctor and find a new one who will listen to you, pay attention to what you have to say. Not everyone will let you tell your story...but you need to keep searching for the one that will.
Kind of like finding your soul mate...except you shave your legs more often for them...because you don't want them judging the braids and beads of your leg hair. Even though they've probably seen worse. :)
Annnnd that's it for this episode of Riley Writes.
Xoxo
Rachele
