Wednesday, September 27, 2017

Rheumatology, and being rare. AGAIN.

I'm so tired right now that I can't even muster the energy to find my last medical update to link to it in this post. Surely it must have been a week or two ago? I can't remember. I do know I mentioned I would be seeing rheumatology and that I was hoping it would give me lots of answers, being cautiously optimistic.

I went. My appointment was early in the morning, and it was raining pretty hard. I watched it rain as I waited and waited. By the time I got called back the nurse was telling me she knew me from somewhere but couldn't place it, and because I have a terrible memory now I had no idea who she was. It's always awkward when this happens because usually I can remember everyone, I once had an amazing memory. Freakishly so. Alas, I had no idea who she was so it made for an odd check in.

After some time my doctor came in. She's clearly an immigrant because she has a thick accent and here's another fun fact, post AFE I have a hard time understanding what people are saying as they speak to me, even more so with an accent. It's like my brain can't keep up translating words and understanding at the same time. Oh well. You get what you get, and I went through why I was there. She seemingly had no idea and goes on to tell me how everyone had an abnormal ANA (blood work lab result) and so what? It means nothing!

Well super, but I was sent here, so please help me.

She checks my joints, she asks me more questions, and decides that I need more blood work and x-rays. She's going to send me over to the lab, I should come back to see her in five weeks.

I leave there feeling pretty damn dejected. She looked at me like she essentially felt sorry for me and is sad that I'm clearly crazy. Which was only affirmed when she had me taken to the lab in a wheelchair.

No, I am not kidding.

I cried all of the way to the lab and when we got there, I got out of the wheel chair and the guy who escorted me seemed kind of mad about it and huffed off like I was a total waste of his time. Which, whatever buddy.

When I get called into the lab, I learn I'm getting 14 vials of blood, have to pee in a cup, and get three x-rays done. Seems a bit crazy, but alright.

By the time I got home I was feeling pretty awful. I learned within a couple of hours that my pee had bacteria, but they didn't do a culture, so they needed more pee. I went to the lab near my house, peed in the cup AGAIN, and came home. Only to find out on Sunday that my pee couldn't be cultured for an infection because it was contaminated. Um, how do two samples end up contaminated? I'm a professional pee-in-the-cup person, I've had four children, I know how to pee in cups. So whatever. I have no symptoms so she wasn't worried.

What we DID find out?

- I don't have lupus
- I don't have rheumatoid arthritis
- My C-Reactive Protein is elevated. That has something to do with inflammation?
- I have bone spurs in my lower back
- She ran other blood test and my results for "antiphospholipid syndrome are equivocal"

What's antiphospholipid syndrome you ask? Well thanks to Google, I've learned it's an autoimmune thing where your immune system attacks proteins in your blood and causes clots, basically.

In order to be tested you usually have to have an "event" like several miscarriages/still births that aren't from another cause or thrombosis, and then you're given this blood test. But in order to be diagnosed, she said I have to have another blood test in 12 -14 weeks, and if my blood shows the antibodies again, then that's my diagnosis. Scary because she said if that's the case I'm looking at blood thinners for life, and that doesn't guarantee I won't have clot issues, stroke, etc. Even better? Let's say I have a blood clot in my leg (which is common with this if untreated) and it breaks off, I could have a pulmonary embolism. She said it's possible my AFE was the "event" and my subsequent stroke and hemorrhaging issues could have been because of this, which they wouldn't have known about because I had no reason to be tested for it. But along with this, I have several of the "risk factors" for thrombosis (blood clots): high blood pressure, obesity, and estrogen replacement.

Wait, what?

The estrogen replacement your endocrinologists are making you take so you don't have bone loss and heart disease?

You know it, lambs.

Honestly, I cannot fully express to you how absolutely sick and tired of all of this I am. I'm over it. Why can't I have something normal like lupus wrong with me? I mean, lupus is terrible and awful, but people know what it is. I can't even pronounce this syndrome, let alone spell it. The only good news is that I'm not able to have babies anymore, because this thing could make that a problem. But that's a non-issue, so that's good.

It's all boiling down to this one blood test I take in 12-14 weeks.

Not like I'm anxious or anything.

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