Thursday, November 17, 2016

More appointments, more pee, and trying. Lots of trying.

After last week, I went into the weekend feeling pretty damn defeated. I did some fun things, to hopefully make life a little more fun and not focus on my failures and struggles so much. But let's talk about the medical stuff first.
Last week I saw my endocrinologist and he reviewed the lab work I had done the week before. My thyroid is still considered low functioning, and everything is basically the same. He was concerned that I'm still peeing too much, which means my diabetes insipidus is maybe not as controlled as it could be. In order to figure that out, he ordered me to do a pee-in-a-jug test where they test it to see how much salt is absorbed into it... or something like that. Turns out, I peed 3 liters in a 24 hour period which is considered elevated and peeing 10 times in the course of a day is kind of high. So the recommendation is for me to take another half pill of Desmopressin in the morning (I take a half pill at night) and that should help. All well and good while my insurance deductible is met and I don't have to pay for my medications, but it's dawned on me come January 1? I can't afford all of these pills. I will become that person who has to determine what I can afford and what I can live without. I'll have to just learn to like peeing hourly.


Another concern that I have, which my OB doesn't seem to be concerned about is my scar. Because I was in a really critical situation during my c-section, I have a vertical incision. Normally it's a horizontal one, but what can you do? My problem is that for most of my life, I have had what I have always referred to as my "kangaroo pouch". It's a weird lump of fat under my belly button and no amount of dieting or exercise makes it shrink. Well, half of my scar goes over and under the flap so when you lift the flap, it basically looks like another butt hole. In my stomach.
You see? We can all just call it my second butt hole. The other super disgusting part? Is that because it's a flap (you can see the crease), I sweat during the day (thanks, hot flashes!) and it.. let's just say it leaves a residue and it's so gross. I've become that fat person that has to clean the folds of skin. It's disgusting. I cannot highlight enough how disgusting it is.


This week I saw my neurologist on Monday. That was a really depressing, and frustrating, appointment. I learned that not only did I have lung failure, amniotic fluid embolism, and the right side of my heart fail, but I also had a STROKE. Apparently having a stroke after a trauma involving blood loss and lack of oxygen isn't uncommon. But I was surprised that this was the first I had heard of it. So I left there with a feeling of defeat because though I'm only 34 and my brain is young and relatively healthy, they can't tell me how much I'm going to get back. Certainly memories that are gone, those are gone. But my short term loss? Nobody knows. We're hopefully that my brain testing in January will be more helpful.

I'm scheduled for an EEG today to see if my "brain blinks" are actually seizures. The hope is that they ARE because if they aren't then they don't know what's causing them.

I saw my general practitioner on Tuesday for a full physical. The doctor is GREAT and is so thorough, listens to everything, took a copy of my symptoms list and really tried to go through each one to find solutions. My blood pressure medication and my anti-depressant are changed so we're hoping that helps a few things. Interestingly, when I mentioned the stroke she said I didn't have one. I said, oh yes I did, I saw it on the MRI myself. So she spent 20 minutes going through every report and image in my patient file and sure enough, it's there. Bad news? Is that the MRI was taken on August 4 and the only doctor who would have known about it is the neurologist- the information wasn't readily available in my file so anyone treating me from that day until this week, wouldn't have known it.

Cue frustration and fear.

So now I have to advocate harder for myself to make sure EVERY detail of what I've gone through since August 1, as much of a pain as it is, is in my patient file on the summary page. Maybe it doesn't seem like a big deal, but if I get into a car accident or see a doctor who isn't familiar to my situation, they need to know right away. They wouldn't know, or maybe have time, to go into the detail pages to look for something.

So that's been my week so far. I'm feeling really down on life in general. More on that another day. But I need a nap and I'm sure you have things to do. More soon, lambs.


The Flynnigans said...

Sara, Sara, my how frustrating and devastating this is for you.
May I ask, has anyone witnessed you having these "blinks"? And how long until you know what the diagnostics showed today? ARE you having seizures? Maybe petite mal epilepsy? A friend of ours had it but he's passed away.

I want to hug the crap out of you and take away all this fear, frustration, sadness, confusion etc etc away from you. My mother at your age had a stroke and cerebral aneurysm and survived. It's fkd up how and why these things happen.... :(

xoxoxo Always here for you

thotlady said...

Take care and know that people are thinking and praying for you. I know you are not religious, but I think it helps to know others, that are religious, care and pray for you.

Julie H said...

Maybe down the road you can get some help with all that scar area. It's sad that we have to tell Dr's what we have going on. I am my husband's advocate and the last doctor really hated me and commented when I didn't go to a follow up appointment with him.