Wednesday, December 30, 2009
Sunday, December 27, 2009
Saturday, December 26, 2009
Tuesday, December 22, 2009
Monday, November 30, 2009
Friday, November 13, 2009
Saturday, November 7, 2009
Monday, November 2, 2009
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:
Start with one step.
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.
Friday, October 23, 2009
Tuesday, October 13, 2009
Monday, September 28, 2009
Friday, September 11, 2009
Monday, August 24, 2009
Friday, August 21, 2009
Monday, August 17, 2009
Sunday, August 16, 2009
Saturday, August 15, 2009
Sunday, August 9, 2009
Thursday, August 6, 2009
Tuesday, August 4, 2009
Sunday, August 2, 2009
Saturday, August 1, 2009
Tuesday, July 28, 2009
Wednesday, July 22, 2009
Thursday, July 9, 2009
Tuesday, July 7, 2009
Monday, June 29, 2009
Tuesday, June 23, 2009
Wednesday, June 17, 2009
Monday, June 8, 2009
Friday, June 5, 2009
Tuesday, June 2, 2009
Tuesday, May 26, 2009
Monday, May 18, 2009
Sunday, May 17, 2009
Because of the loss of the gliding surfaces of the bone, people with arthritis may feel as though their knee is stiff and their motion is limited. Sometimes people actually feel a catching or clicking within the knee. Generally, loading the knee joint with activities such as walking long distances, standing for long periods of time, or climbing stairs makes arthritis pain worse. When the arthritis has gotten to be severe, the pain may occur even when sitting or lying down. The pain is usually felt in the inside part of the knee, but also may be felt in the front or back of the knee. As the cartilage is worn away preferentially on one side of the knee joint, people may find their knee will become more knock-kneed or bow-legged.Someone who has arthritis of the knee may experience pain, swelling, and a decrease in knee motion. A common symptom is morning stiffness that lessens as the person moves around. Sometimes the joint locks or clicks when the knee is bent and straightened, but these signs may occur in other knee disorders as well. The doctor may confirm the diagnosis by performing a physical examination and examining x rays, which typically show a loss of joint space. Blood tests may be helpful for diagnosing rheumatoid arthritis, but other tests may be needed too. Analyzing fluid from the knee joint may be helpful in diagnosing some kinds of arthritis. The doctor may use arthroscopy to directly see damage to cartilage, tendons, and ligaments and to confirm a diagnosis, but arthroscopy is usually done only if a repair procedure is to be performed.
Tuesday, May 12, 2009
Friday, May 8, 2009
For those of you who may not have Still's, the shoulder problems that I have at least leave me feeling as though I have a perpetual dead arm. If you've ever had one, you can appreciate how difficult it becomes to do everyday things like open doors, move things around, or even stretch.
There is really no comfortable position that I can get in to solve this problem. I am trying to refrain from taking pain medication, because I really just don't like how often I've had to take it in the past and how it makes me feel. However, because of the swelling and the fact that I have to work the next three nights, I might just have to take something...
Thursday, May 7, 2009
Tuesday, May 5, 2009
Monday, May 4, 2009
- Icy Hot products
- Heat therapy patches
- Pro-Ice wrap (expensive!)
- Rest (apparently that's supposed to help, but never does for me)
- Working out. If you strengthen the muscles in your shoulder, it shouldn't happen as often. This is a nice concept in theory, but not entirely accurate for those of us with Still's.
Friday, May 1, 2009
I work in retail and I pretty much work everyday, one way or another. Last week, I worked everyday except Wednesday. It's not super demanding on a normal person really. However, if you have JRA and you're standing for six to seven hours everyday after walking around all morning, it get a little tiring. I go to classes in the morning and then work late into the night, so it makes it difficult to get any rest.
Last Sunday was my 21st birthday, so needless to say my friends wanted to take me out. Saturday at midnight (Sunday morning, whatever) we went out to La Cage, the gay bar/club in Milwaukee. It was amazing and that's totally my new spot. I feel a lot safer there than other places because everyone there is so caring and nice and I really don't have to worry about - well, I digress...
I danced for about two and a half hours non-stop before they started closing down the club. When I was in high school, dancing was my thing. I could never take dance because of my JRA, but I'd go to every dance and just keep going for hours. My friends and I choreographed dance routines to songs and it was so much fun. Obviously, I'd pay for it with a physical "hangover" the next few days. Needless to say, after not dancing for so long, the pain was far worse this time. I was tired enough the next day, but it's really the second day after that the pain sets in. I did not want to move at all. A week later, I'm still feeling it... kinda.
I went to a Brewers game with my boyfriend Tuesday night and our tickets were all the way at the top of the stadium. It made for a great view, but there were so many stairs! I had so much fun and it was a great game. I wouldn't have traded it for anything though. :)
Along with all of this, the elevator in my dorm building has been making some... odd noises. I've been trying not to take it, because that's just creepy. This means more stairs time, but I live on the fifth floor. Add into that the fact that I go to and from classes and work and social gatherings probably half a dozen times a day or so is what makes it an issue.
I took the first of four finals today. It's pretty nice to be almost done with this year of schooling, but that subtracts sleep (and sanity) from the equation. One of the most important factors that many people fail to address when they discuss Still's Disease is how much the physical limitations affect the mental state of the victim (that was the best word I could come up with, so forgive me).
As a younger child, I think that it was a little easier to accept. Doing 'x' hurts, so I'll just sit here and do 'y.' Obviously, it sucks that I couldn't go do certain things with the other kids, but younger kids are more accepting of why people can't do certain things. As Ive grown up, I've seen that other people are more closed minded than I would've ever imagined. When I can't participate in certain activities, I find that people don't care to understand why. Instead they blame it on this or that, failing to listen to the real reasoning. Between that and my stubborn nature (Taurus!), I don't feel as though I can just sit here and do the easy things. I feel like life is a challenge - one that I intend to participate in as fully as possible. If that means that I get a little extra tired or sleep through classes some days (oops), then so be it. I'd rather be as alive as I can than sit here wondering what it's like to get a dance routine going in a club or go hiking on the coast.
This post is a little disorganized, so you'll have to forgive me. The amount of sleep that I've gotten as of late is not a lot.