Tuesday, July 24, 2018

When the wheels fall off.

I haven't done a health update in awhile and that's not because it's been quiet, but because I've been lazy. So let's recap my health status as we approach the two year anniversary of the AFE.

Auto Immune Stuff: So I've been seeing a Rheumatologist for awhile and we steadily do labs and right now my daily pain is being managed with a once a week dose of Methotrexate, which is really a common thing with people in this group. It works fine enough, I'm not pain free but I'm realistic enough to realize that's probably not an attainable goal. Instead I'm learning to move slower, I don't push myself like I want to because I'll be immobile the next day and I can't manage that. Curiously, one of the things they check regularly is my inflammation in my body, it gives them an idea of where I'm at with my dose of medicine. I continue to be high and they are stumped on what to do with me. That's always a fun thing.
Stomach Pain: I think I mentioned that I was going to have an endoscopy but I don't know if I reported back about that. The procedure itself was fine, I guess. It was the waiting before that was horrific. I ended up waiting 37 minutes in the procedure room, totally ready to go because they were running behind. I just laid there and cried because I felt panicky and I kept having flashbacks from my emergency c-section. Except I can't possibly know if it was a true flashback because I can't remember anything but I just kept seeing a slide show of images in my head that were like ceiling tiles, equipment, something being put on my face/nose, stuff like that. The nurse and anesthesiology tech in there kept asking if I was OK and all I could do was shake my head no and told them I was just really scared. Afterwards I was really nauseous and weepy but I think it was an adrenaline crash combined with not taking any of my mental health medication before. I took just the stuff I need to keep me from crashing because I didn't understand any of the paperwork they sent me.

Anyways. So the procedure showed that I likely have a hiatal hernia, GERD, Barrett's esophagus and a stomach polyp. Thankfully the polyp was benign so that's just going to hang out there. Barrett's esophagus is a "change in the lining of the esophagus due to chronic acid reflux". Which is nuts because I don't have heartburn. Except when I'm pregnant. So.. go figure. I was put on an over the counter med for that and I need to do the EGD annually (which is just fantastic) because there is a chance the Barrett's esophagus can progress to esophageal cancer. So we're watching my esophagus but also my liver because I've got a lesion there and that could turn cancerous. Are we sensing a theme? Who wants to bet I die from some weird cancer?! From my limited Google searching, cancers in your gut/abdominal area are sometimes hard to find, often found late, and are really awful to die from. So that's super exciting.

And to boot, that stupid medication isn't working because my stomach hurts every day still. Bright side? I'm hardly eating so hopefully I start losing weight!

Mental Health: Sigh, so I saw my psychiatrist again because the last two medications that are supposed to level me out gave me tremors that rivaled Parkinson's disease. That's not really awesome so I stopped taking them. Instead I'm stitched to Trileptal which is alright so far. I don't really feel any different except I haven't raged and almost broken a door so I guess that's a plus. I got back later this fall to report back on this med. I really hope this one works because I'm just so damn weary of it all.

Overall: I continue to be sick of doctors. Thankfully I haven't had as many appointments as of late so that's been really nice. This entire journey just reaffirms that we need to continue advocating and supporting the research of Amniotic Fluid Embolism. I absolutely believe that my AFE was the catalyst for all of this. I was 100% healthy, with no issues, before my AFE and suddenly I have a massive list of problems. It's just absurd. If you want to help the cause, learn more about AFE and donate HERE. Seriously, even a $1 helps. The Foundation is doing some really great things and they are financing the research being done, so every dollar goes to the cause. I hate to think another mom will go down this road, I refuse to believe it's a freak occurrence.


Shybiker said...

Whoa, what a tough spot you're in. My deepest sympathy for the difficulties of your present life. Managing your illness and having to deal with doctors is rough. I hope you find good days, pleasant times and relief from pain. I admire your courage and wish you well.

Jo-Anne's Ramblings said...

It sucks when doctors do tests that show nothing or leave more questions without answers, which is the story of my life