Monday, December 26, 2011

Wait, what?

I'm having odd muscle issues. It's happened a few times before, but always in my sleep so I didn't really think anything more of it than an odd muscle cramp or migrating charlie horse. But apparently, when I actually got to look at it, I realized how fucking creepy it was.

Sorry, there's not another way to put it.

So Christmas, right? I worked a lot. I woke up and my right leg was super tense. My right heel hurt like a bitch - it hurt to walk, hurt to put pressure on, but I fought through it.

Later in the evening, the leg muscle tension has moved into my right foot. We are watching X-Files and waiting on nummy pizza when all of the sudden, the three middle toes on my right foot froze. Maybe even my pink too but it's so small I wasn't really paying attention to it.

They didn't just freeze like in place either. They fucking curled down towards my foot. It was like all the muscles in my whole leg down into my toes froze up. It was like that for, oh, a minute at the absolute most but probably 30-45 seconds realistically.

It was the scariest fucking thing I've seen in a while.

The muscles are tense today, but not as bad. I don't know how or why this happened. I googled it, obviously, to find that it could be lack of potassium, magnesium, from my RA, or from Parkinson's or MS.

My great grandma essentially died from complications caused by her MS. I watched her, as a very tiny girl, lose her mobility. I have very few memories of her before her Amigo go-cart. Things just got worse and worse for her. She eventually had a stroke, and ended up in a nursing home with a broken voice box because of the dip shit doctors.

And I have always been afraid that is going to happen to me too.

Yay for borrowing trouble and googling stupid shit my body does.

PS if you've had this, want to share what's up? Please?

Tuesday, December 20, 2011

I think I'm in love...

With my new rheumy. And her nurses. And the whole office.

I got to the office, and they had like 80 handicapped parking spots near the entrance. Awesome. But I found a "normal" spot. They have a self-check-in kiosk - score. I avoided the long line. Not that it super mattered because I got in about half an hour early.

The waiting area was nice. It was large, and there were a ton of chairs. Rheumatology shares its waiting area with vascular surgery and cardiology. An interesting mix, but there was a good separation in waiting areas.

The nurse that took me back was very nice. He was a veteran, probably mid-30s, with an awesome sense of humor. I found out he's a float nurse from GP hanging out in rheumatology sometimes, but I love him. We talked about Arabic, knee problems (he SO wins that one, even before his three deployments), and he really made me feel comfortable. He also super liked joking around with me. It was awesome, almost like having my uncle there.

My doctor herself was so nice. She asked me why I was switching, and I told her that my former doctor's attitude just wasn't working for me, that I wanted to be more involved with my heath and walked through these things - not just for me but for the health blogging community.

She talked to me - really talked to me. She got to know me, and listened to me gripe about my health and my life in general. She did a full examination, listening to me about the joints that are sore. We came up with an action plan together, and that's exactly what I wanted.

So, I'm going back on MTX - but the injectable. She also gave me a stronger NSAID, but one that is known for not being harsh on the stomach. I have a referral to PT, a GP, and an ophthalmologist. The ophthalmologist part was interesting, just because she asked about my history with uveitis. As I told her, she looked at my eyes and began writing down info on a great doctor. She could see that my eyes were not symmetrical and that they were a little red.

Finally.

I am so excited.

Her nurses came in again and gave me a flu shot - while being hilarious. I spent like 15 minutes talking with one of the nurses, just hanging out. I almost didn't want to leave.

I feel like I'm in charge of my health, and that's exactly what I needed.

I feel so lucky to have such a wonderful doctor, and I can't wait to see any of them in the office again.

Sunday, December 18, 2011

Christmas comes early

Or, at least, I hope it does.

The last week has been amazing. I've watched everyone stress out about finals and studying, and not had to deal with it for once. It really was that sinking in moment since making my decision to stop school. My body feels a lot better than I know it would if I were doing all this school stuff.

Still, it's in rough shape.

A couple of days ago, my left hip hurt so much. It almost felt like it was swollen so much it wasn't in its socket. Way to be, hip. Then, of course, my knee started hurting. And then, because I was favoring my right side, that started hurting.

Seriously.

Now, tomorrow is something I've been holding out for for a couple of months - a new rheumatologist. I'm nervous, because I always am. I know I'll have to tell my whole story (for the 10 millionth time), get blood taken (blech), and who knows what else. I'm hoping to walk away with the beginnings of trust in my new doc, supposedly one of the best rheumatologists in Madison.

I'm also hoping to walk away with a few different medications, and a dosage change for my Humira.

Humira helped so much at the beginning. As it got colder, and my body got used to the medication, it stopped helping as much. I went from being able to hike miles this summer to being super out of shape and sweating and getting out of breath during a mile and a half walk with my boyfriend. I couldn't even do easy yoga poses last night that I can usually do easily. So lame.

Here are my main goals for my appointment:

  • See if she actually believes me about my pain
  • Get her to correct dumbo doctor's mistakes in my medical records
  • Check for fibro, depression ( :( ), and uveitis
  • PAIN MEDICATION THAT'S NOT IBUPROFEN GODDAMNIT
  • Dosage changes for current meds
  • Ideas for a good GP
  • Dietary/exercise suggestions
  • And maybe a fibro medication that helps with the sads too
I really really hope that things go well, because I really really need them to this time around.

Saturday, December 10, 2011

Hey You Guys I'm NOt Tired - Oooh SHiny Things!

Yeah, I used bad punctuation. I don't caaaaaaare.

I took 2 extra MG of steroids this morning - oh and I had more caffeine than I've had lately - and you know what? I've been up since 10am, it's now 2am and I'm still upppppppp.

Leg bouncing, full of energy. Try to sleep? Maybe? Dunno! Have a paper to finish. But too much energy maybe even for that because I can't focus on it holy caaaarp.

Maybe I can doooo my Humira shot! Oooooooh maybe.

K guys, thanks for listening to crazy energy girl who needed to expel energy on the blog poooooost!

Kthxbaiyouguys

Tuesday, December 6, 2011

Blah

I'm exhausted, and all I've done today is been awake and perused social media and watched TV.

My left hip is killing me, and now my left knee as well, surprise surprise.

It's being a hard day and I wish I had just slept through it right now.

Thursday, December 1, 2011

The Biggest Decision I've Ever Made

This semester has been pretty difficult on me. I'm not ill with other things, like pneumonia or other respiratory illnesses like when I was on MTX. Unlike last semester, I don't feel 100% dead. But I am struggling. In thinking about things the other day, I came to the conclusion that school is no longer a real option for me. And, whereas last semester that would've freaked me right out, I'm okay with the decision now.

At this point, Arabic specifically is being offered earlier and earlier. It continues to force me to get up earlier and earlier. Unfortunately, it makes it very difficult for me to handle my disease. My Humira I think isn't helping as well as I thought it would. Hopefully it's just a matter of adjusting dosages. I'm also in so much pain lately. And it's not just an arm or a shoulder - it's my knees, my ankles, my hips - all those things you need to move around and do things. Even though my job is a lot easier, I'm still finding myself having to make the decision between whether or not I can go to school or to work - and I have to be able to support myself financially.

Sadly, I don't think that other people understand what I'm going through. And I don't expect them to. If someone sees me at work and knows I wasn't in class because of my disease, but I seem to look fine, it's hard to understand I know. And I am thankful that so many people won't know what I'm going through.

It's just about reevaluating my life. My plan was to work with the UN - in order to do that, you get stuck in the worst health countries first so you can work your way up. I can't do that. Then I thought I should be a professor - but if I can't even make it to classes to teach, what is the point? Why should I continue to accumulate loans when I can't possibly do what I want to with my education. I have learned Arabic, which is something I always wanted to do. And I will always study that part of the world, because it's fascinating.

But more fascinating to me is my own body and the struggles it goes through. I value more the comments I get and friends I have made because of blogging about my experiences. I have helped people just by being me, and that's amazing. After reading books and talking to their authors, like Christine Schwab, I know now what I want to do. I've been working over the past few days on a book about my experiences with my disease. I hope that it will help others, and I know that it is already helping me.

Now I just face the tough decision if I should really finish my classes this semester. It's not a good thing to receive bad grades, for sure, especially not for a former overachiever like myself. But at the same time, I don't think it's worth the stress to worry about my grades at this point. And again, I'm somehow okay with all of this. I don't even know how.