Monday, November 30, 2009

Update

I am pretty frustrated with my body right now. It seems like there isn't anything really that I can do right to make it better and that has got to be the most frustrating thing.

A few weeks ago, my shoulders started aching pretty badly. This same feeling moved into my neck and has made it impossible - here and there - to get comfortable. This generally occurs when I'm in class and do not have a wide desk, where I could rest my left arm on it. This same feeling makes sleeping a terrible feat, which is too bad since my arthritis generally makes me want/need to sleep for a large amount of time every night... Easier said than done when you're a college student anyway, but with the extra pain, it's that much worse.

Friday, November 13, 2009

Surprise!

Swine flu! Delicious!

The beginnings of this flu suck, for the record. Chills, disorientation, dizziness... combined with some heartburn, nausea, and dehydration.

The rest I can deal with and generally have every so often with the JRA, so they're not too bad... but this dizziness makes everything seem so crazy. I can't wait until it passes, I can say that much.

Saturday, November 7, 2009

Update

After two weeks of dealing with that terrible arm pain, I'm proud to say it's gone. The movement in my arm is a little limited still, so certain things (washing hair) are still pretty sucky and tough, but that will get better with time I'm sure.

I went and worked out the other day for the first time in a long while. It was nice to get out some of my frustration and I was pleasantly surprised that I didn't end up being in a super amount of pain. I walked/ran for about a mile and a half, biked for about two miles, and did some leg muscle strengthening exercises. Hopefully I can start working out a little more and be able to lose regain some strength that I've lost lately.

My knees haven't been too nice to me lately, but it could always be worse.

Monday, November 2, 2009

30 Things

So I was checking out one of my new favorite blogs, The Single Gal's Guide to Rheumatoid Arthritis, when it occurred to me that I hadn't ever really checked out her links section. One of the blogs that I found very interesting there, The Truth About JRA, is really insightful. This young lady is basically medicine free, how we'd all like to be. I borrowed the following survey from her.

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Systemic Onset Juvenile Rheumatoid Arthritis

2. I was diagnosed with it in the year: 1993ish

3. But I had symptoms since: 1992

4. The biggest adjustment I’ve had to make is: Really, I've had this since I was about four, so I haven't had to adjust a whole lot. I do definitely hate not being able to do things "normal" people can.

5. Most people assume: that I am lazy and eat a lot. I try hard every so often to lose weight, but the physical activity of everyday can be hard, let alone working out.

6. The hardest parts about mornings are: trying to convince myself to get out of bed and sometimes just changing clothes.

7. My favorite medical TV show is: It's a tie between House and Scrubs. I'm more attached to Scrubs, but I love how House's mind works.

8. A gadget I couldn’t live without is: my laptop. On the really bad days, it can be my only real access to the outside world.

9. The hardest parts about nights are: trying to get to sleep... finding a comfortable position in which to lay... the stiffness that is brought on by the day's activities.

10. Each day I take __ pills & vitamins. I try to not take medicine. I only take a mixture of Advil and Aleve. Occasionally, I will take respiratonic to combat the respiratory effects of the disease. On a bad day (i.e., the week before last), I will take up to ten pills a day.

11. Regarding alternative treatments I: believe in and endorse them far more. Medicines and shots are part of why my disease showed up in the first place.

12. If I had to choose between an invisible illness or visible I would choose: Can I choose no illness? I guess I'd rather have an invisible illness that I can share (poor wording?) the effects of with people I am close to... although I hate it when other people judge me.

13. Regarding working and career: I have taken jobs that are easier on myself physically and mentally than working in the retail world.

14. People would be surprised to know: that I don't take five million pills and shots and instead try to control my pain through meditation and expression.

15. The hardest thing to accept about my new reality has been: Well, again, I haven't really had a new reality. I am having to come to terms with having to lean on the people around me more than I am used to when times are difficult. I hate needing help.

16. Something I never thought I could do with my illness that I did was: probably anytime I have a day out without feeling a major amount of pain afterwards or during.

17. The commercials about my illness: make medicine the end-all, be-all of solutions. You can't just treat the physical pains (especially with meds that have terrible side effects).

18. Something I really miss doing since I was diagnosed is: playing and running around without worrying how badly I am going to pay for it later. I missed so many years of school and friends.

19. It was really hard to have to give up: more of my independence recently.

20. A new hobby I have taken up since my diagnosis is: learning as much as I can about my disease. I try to eat things that are less able to hinder my body, but that doesn't always work as a college student with two jobs.

21. If I could have one day of feeling normal again I would: probably cry for a good hour or so... then spend time trying to do things around the house and where I live that are difficult for me.

22. My illness has taught me: that every good day is a gift to be embraced and spent wisely.

23. Want to know a secret? One thing people say that gets under my skin is: ... I hate it when people talk about how weird I am without knowing the whole story.

24. But I love it when people: try to cheer me up with humor, hugs, and some Ben & Jerry's.

25. My favorite motto, scripture, quote that gets me through tough times is:
"To change the world,
Start with one step.
However small,
The first step is hardest of all."
-"You Might Die Trying" by Dave Matthews Band


26. When someone is diagnosed I’d like to tell them: Don't worry. Work hard and stick to your guns and everything will be alright in the end. Learn about your body and know your limits, but push them ever-so-slightly. Don't be afraid of telling people about your disease. They will understand you better.

27. Something that has surprised me about living with an illness is: how unaccepting and judgmental people can be before they know about my illness. Also, I don't have to give up everything that I love to do in order to be pain free. Some things just need to be reworked.

28. The nicest thing someone did for me when I wasn’t feeling well was: just to take care of me and understand that I am in pain.

29. I’m involved with Invisible Illness Week because: Well, I'm really not... yet.

30. The fact that you read this list makes me feel: like you might be able to understand me and my problems in general as well as JRA.