Monday, March 20, 2017

Medical round up, not just me anymore!

On this episode of Strand Medical Round Up...

I'm not even kidding, it's starting to feel like we are always handling medical related paperwork, doctor appointments, doctor bills, medical phone calls, etc. It's so much. I told Matt that some days I feel like I'm working in a medical office just not getting paid for it. I am seriously struggling with keeping track of information and no amount of notebooks, calendars, and reminder apps are working. I have missed Lucy's six month well child check TWICE.


We finally made it last week, and she's officially seven months. Which is fine because I still haven't gotten her three month baby photos done so you can see how well I'm mothering this child. She's going to be the one who has half-assed everything and will need counseling as an adult. We may as well save for that versus college for her. Sorry, Lucy.

But at seven months she is 18.5 pounds and 27 inches long. She's just a chunky little love. If I was a really on top of it mother I would have kept the well child stats for each kid so I could compare but alas, I tossed all of those because my desire to not be a hoarder is stronger than my desire to know this kind of information. She's happy and relatively healthy. Well, the doctor heard what she described as a really "strange, and not totally normal" sounding murmur. She listened for a long time, did the rest of her check, and then listened again. She said her gut is telling her that we should just get it checked out because it could be nothing, but it could be something. And given how she is my AFE baby, there just isn't research out there about what effects that could have on her. Yes, she was born seconds before all hell broke loose with me, but did something happen to her before she was born that lead to my AFE? Nobody can ever know, so her doctor said we should really just be proactive.

And I agree.

So tomorrow morning I am taking Lucy to have an ECHO and appointment with a pediatric cardiologist. I am worried it could be something and I am worried that I'll forget something important a mom should remember.

That's really another stressful think about AFE recovery, I don't know what I don't know and I think I'll remember something, and I won't always. Then I won't remember what it was I should have but I'll have that nagging thing in my head telling me there was something I was supposed to do, remember, say, etc. and I just can't remember. I never feel like I've gotten all of the details of something even if I've written them down. The longer I deal with this the more I realize there aren't enough coping mechanisms out there to help it and I question if I'm going to be able to work again. Because truly, I wouldn't hire me. Not even close. I would get fired if I lied through an interview because it would become blatantly obvious I'm not quite right rather quickly.

Sigh- a worry for another day.

This week I also meet with my psychologist and I'm hoping we can find a solution for my depression. I feel almost bi-polar. I don't mean that in a derogatory sense at all and I know that I am not, but I bounce between feeling upbeat, great, even normal, and then it switches and bam- I want to die. I want to be alone, in the dark, and I want to die. It's hard to get out of those funks and sometimes they last for days. I want to cry, I feel like it would be such a powerful release of negative energy and the medication prevents it. It's like an itch I can't scratch. It's frustrating to say the least.

My neurologist feels sorry for me, understands my frustration, can't help me. Can't tell me if I'll get better or when, it's literally wait and see.

My primary care doctor also feels sorry for me and I think I am a hard patient to help because she just doesn't know what to do. I don't see her for a few months again. Who knows what that'll be like. So until then, I deal with daily pain and exhaustion, nobody knows why or how to fix it.

My endocrinologist does not feel sorry for me, he really enjoys seeing me because I'm a fun patient with a cool medical study. But in these last seven months I've learned that endocrinologists are kind of nerdy so that's to be expected. I head back to Mayo Clinic in Rochester for a follow up in May with that endocrinologist so I'm hopeful they can help me manage daily pain and exhaustion. Surely someone somewhere can, I just have to keep trying.

1 comment:

Julie H said...

Well that pretty much sounds like being bipolar from what I've read. It's a rough road. Not being able to remember things is just the shits.