Thursday, November 10, 2016

A week of appointments.

I knew this was going to be a tough week going in, and I assumed it would mostly be because I'd be overwhelmed with information. I went in feeling hopeful to see things taking a turn for the better and feeling like I was crossing some major hurdles.

Instead, I'm ending the week feeling frustrated and overwhelmed.

It started with my endocrinologist appointment on Monday. He's really great and you can tell they don't see a ton of patients in the course of a day because he spends a lot of time with me. He's also incredibly intelligent and says things like, "fun fact for you" or, "here's some trivia" and then tells me some obscure piece of information that is only kind of related to what I'm dealing with, but mostly useless. It's hard to get annoyed or frustrated because you have to admire someone who clearly has a passion for what they do in their career or how someone can get SO excited over a pituitary gland. But I learned that my MRI showed that my pituitary gland has shrunk even more. If you aren't familiar, you pituitary is kind of like the ignition of a car- it's what fires the rest of the stuff in your body, I guess. The front part is a lot of hormone based things and the back half is a lot of function type things. Both parts of mine are damaged, which is why I haven't had a period, my milk never came in, and I'm experiencing menopause like symptoms. I left there with a 100% official diagnosis of diabetes insipidus and Sheehan's Syndrome.

Diabetes InsipidusDiabetes insipidus occurs when the body can't regulate how it handles fluids. The condition is caused by a hormonal abnormality and isn't related to diabetes.
In addition to extreme thirst and heavy urination, other symptoms may include getting up at night to urinate or bed-wetting. Depending on the form of the disorder, treatments might include hormone therapy, a low-salt diet, or drinking more water.

Sheehan's SyndromeSheehan's syndrome is a condition that affects women who lose a life-threatening amount of blood or who have severe low blood pressure during or after childbirth. These factors can deprive your body of oxygen and can seriously damage vital tissues and organs. In the case of Sheehan's syndrome, the damage occurs to the pituitary gland — a small gland at the base of your brain. Sheehan's syndrome causes the permanent underproduction of essential pituitary hormones (hypopituitarism). Also called postpartum hypopituitarism, Sheehan's syndrome is rare in industrialized nations. But it's still a major threat to women in developing countries.

On Tuesday I had my first appointment with my counselor. She turned out to be really fantastic and I felt completely comfortable with her. She was really nice. I spent about 90 minutes there where I basically outlined how I felt, what I'm going through daily, and then some basic history about me. It felt really good to have someone tell me that what I feel is normal, but it's scary and I need to deal with it immediately. I left there with an official diagnosis of PTSD, severe depression, severe anxiety, and passive suicidal. 

On Wednesday I went to my OB/GYN to discuss hormone replacement therapy. Apparently, age 34 is not a great time to go through an unnatural menopause. I had a series of labs taken and I should hear about those on or before Friday. But my options are pretty crappy. I can take HRT pills (two per day, a combo of estrogen and progesterone) and basically be a stroke risk because of my brain damage and pituitary gland situation, OR I can not take the HRT's and be a high risk for heart disease. It's damned if I do and damned if I don't, but as she said, if I go with the stroke option, there's always a chance it won't happen or would be "mild". Heart disease is bad no matter what, so I took the stroke option. But we'll see. Maybe my hormones are just fine despite my pituitary gland being shot. It's doubtful, but I remain hopeful. But the low point was sitting in the waiting room and realizing I was the only non-pregnant person in the room. Then I started having a panic attack that I couldn't stop. I started crying and getting hysterical. Every woman was staring at me, and by the time I got called back I felt like climbing the walls. When my doctor walked in and I explained everything, she hugged me and cried with me. And it doesn't make it any easier. 

Next week I see my original neurologist on Monday to go over the full result of my MRI. I'm a little nervous but hopeful. I also have a fasting lab and complete physical on Wednesday. My list of symptoms and things I'm dealing with grows every day and I honestly worry that I'm going to overwhelm that poor doctor. I'm starting to get frustrated when they don't know what to do for me. I can't get angry with doctors, it's not their fault I got stuck with a rare trauma. They are limited in what they can do because they just don't know, there isn't enough education out there, most people die. 

So that's where I'm at. I hate that I don't feel grateful to be here. I'm sad, angry, depressed, anxious, overwhelmed and exhausted. I just.. sometimes I wish I had just died. It would have been a peaceful way to go. I was asleep and that would have been it. I don't know what's in store for me but know that I even care anymore. And I know that makes me sound like a terrible person given that there are so many fighting something worse than me. It's just.. I don't know. This is my new normal. I don't like it. 


Julie H said...

It sounds like you have a lot of great doctors! I hope things start improving for you soon. said...

Just take one day at a time. Enjoy the smiles of your children. Lots of prayers and hugs your way