Tuesday, October 18, 2016

AFE Update: making lists and getting nervous

**If you are new to the blog, please read my post about Lucy's birth first, that way you'll know why this post is relevant and learn what AFE (amniotic fluid embolism) is** 

I've said before but October is kind of a chill month for me right now. I've had a busy August and September, and not much action in October, but November is going to be busy. It starts with MRI appointments, literally on the first. I am having two MRI's in the same week, along with brain testing (sounds ominous and sketchy, doesn't it?) which is apparently a repeat of testing I had done when I was in the hospital. I'm having it done at each hospital in Duluth and the neurological team is going to basically conference together and figure out what to do with me going forward and maybe give me (hopefully) some idea of what my future is going to be like. 

Going into that, I'm a little bit worried. I haven't been totally honest about my memory and just every day normal stuff. I've had what I call "brain blinks" and the best way to describe it is my brain literally blinks in and out. Like one of those Viewmaster toys where you push the lever and the screen clicks into a new image- it's like that. One minute I'm fine, and the next it's like my brain pauses a second and bam- I can't remember why I'm where I'm at, how I got there, what I'm doing, and sometimes I'm not sure where I am, but then blink- I'm back to normal and it's like nothing happened. Truthfully? It's scary. It's terrifying, actually. I'm afraid I'm going to leave a kid behind somewhere or worse. One time last week I was driving and suddenly forgot how to get to my kids' school. I driven there hundreds of times and bam, totally forgot and then it clicked and I was totally OK. 

So we'll see what the neurologists have to say. 

Next up- diabetes insipidus is kind of a pain in the ass. Thankfully, the medication I got works on the lowest dose so I've been managing it well. Except I get outrageously thirsty at random times. I'm working on keeping my water intake at a steady level (it's not necessarily good for me to drink a bunch at once and then go an hour or more with no water, I have to even it out), and that's been tough. Sometimes I forget because I'm busy with kids, and then I realize I'm over the top thirsty (it's similar to running a couple of miles and being dehydrated and wanting to chug water) and then it kind of messes me all up and I'm peeing a whole bunch and then thirsty again and it's kind of how it is the rest of the day. 

I was also diagnosed with Sheehan's Syndrome and that's been fun. I was told that I have to write down every symptom or weird thing I experience because some of it will be tied to Sheehan's, and the rest... well they aren't sure, but I need to make a list anyways. So here's the list I have so far (aside from what I've already mentioned) 
  • I definitely feel dumber. I have a hard time explaining things I absolutely know that I know. Things that I could have rattled on about without thinking about it, I can't even get thoughts organized enough to talk about them. 
  • I've got no period. I know, most women would shout with glee! And I am, truly! And by no period I mean I've only had 5-7 days (not in a row, totally sporadic days) of light spotting since giving birth. That's it. But before you get all excited for me, just know I'm in PMS hell. I am constantly flipping between two options: option 1 is a total PMS week complete with migraines, moodiness, and cramps from hell where I feel like I'm being stabbed, and option 2 is hot flashes where I'm pretty sure I'm going to burst into flames. It's horrible. Clearly my hormones are stuck and it's not good. 
  • My entire body hurts. I can't really explain this well, but I basically feel like I've simultaneously run a marathon and been physically assaulted. All of my insides hurt, head to toe. My hips feel like they are going to fall out of their sockets and my back hurts I can hardly move. It's really awful.
  • The fatigue, my god... the fatigue. Even if I manage to get eight hours of sleep at night, I wake up feeling like I haven't slept at all and I can barely get going. I could sleep all day if the opportunity presented itself. I don't even get the bursts of energy I used to get, this is just absolute fatigue all of the time. 
  • Guess who has gained 20 pounds in a MONTH?! This girl. I can't even tell you how because my diet is managed well. Sure, I'm not exercising but that's because I'm so damn tired and when I walk for even a short while the body pain is excruciating. 
  • Another side effect of Sheehan's is lack of a sex drive. Which, I feel really bad about, because I know it's an important thing to Matt but the thought of staying awake, and having energy for it... not there. I don't even have any kind of urge. 
  • Depression. It's bad. I have my first official counselor appointment in November and I'm not even optimistic about it but I know I need to go. I need to fix myself, one thing at a time. 
So yeah, that's all I've got so far. HA! But seriously, I feel like I'm falling apart. Matt said I'm the best actress he knows and it's kind of scary. But more on that another day. 


Ruth said...

Brain blinks is what I call brain fog. It's a weird thing and can come and go out of nowhere. I have given my maiden name before because I couldn't remember my married name. I have been married for years.
Forgetting where you are is horrible and confusing.
You might have to have meds for your thyroid or have the dosage changed. That might help with weight gain and mood swings/depression/sex drive.
I hope they figure things out for you.

The Flynnigans said...

I hope they can figure out a better course of action for you. :( love and hugs girl.xo

Allena Stephens said...

Oh Sara. I hate that you're going through this. I know you have a good support system and many people who love you and want to help you out, but I'm sure you are frustrated with the whole thing. I think about you all the time, and I wish I lived close and could help out. Love you tons, and I hope things get better as you visit these doctors and professionals. I admire your strength. You are amazing. ❤️