Wednesday, July 6, 2011

30 Things

1. The illness I live with is:
 Rheumatoid Arthritis

2. I was diagnosed with it in the year:
2006 (Mid July)

3. But I had symptoms since:
Probably about mid March or April.

4. The biggest adjustment I’ve had to make is:
Not being able to go to Ames and see my best friend and sister when I want to, pacing myself more, and actually having to ask for help when I need it.

5. Most people assume:
That I am lazy, lying, or making a bigger deal about the pain then is necessary.

6. The hardest parts about mornings are:
Waking up in pain and not being able to move very fast because of the stiffness.

7. My favorite medical TV show is:
Grey’s Anatomy. I can’t help it, I love the melodrama!  ;)

8. A gadget I couldn’t live without is:
My medi planner, shower chair, laptop, and rolling desk chair.

9. The hardest parts about nights are:
Not being able to get into a comfortable position to sleep and not being able to keep my mind from racing.

10. Each day I take __ pills & vitamins. (No comments, please)
12 and a half pills, 7 vitamins along with two self administered shots once weekly when I can actually get the Enbrel, otherwise just one shot weekly.

11. Regarding alternative treatments I:
Have looked into some and realized that not only do I not have the money to pay for them, but also that I’d rather keep doing what I’m doing.

12. If I had to choose between an invisible illness or visible I would choose:
Hmmm… this is a hard one. I guess I would have to say invisible but they each have their own problems and benefits I suppose.

13. Regarding working and career:
A little scared about what the future holds for me but I’m trying to stay positive. I started my own Mary Kay business so I could at least have a little money coming in. Now I just have to be brave enough to get clients who are out of my comfort zone. (As in not related to me or friends of mine.)

14. People would be surprised to know:
I’ve always secretly wanted to be a singer, dancer, gymnast, or ice skater at one point in my life or another. Too bad I have never had the aptitude for any of these things.

15. The hardest thing to accept about my new reality has been:
That I have to be more careful to conserve my energy, am tired ALL the time, and have to have help doing everything from getting dressed to walking.

16. Something I never thought I could do with my illness that I did was:
Do almost 300 hours at an internship last summer.

17. The commercials about my illness:
Give me hope for the future and make me happy that people are learning more about the disease. They also frustrate me at times because people don’t see a complete picture of what living with RA is like but they think they do.

18. Something I really miss doing since I was diagnosed is:
Being able to get dressed on my own, actually having energy, waking up and not being in pain, being able to come and go whenever I want.

19. It was really hard to have to give up:
My freedom

20. A new hobby I have taken up since my diagnosis is:
Cross Stitch and being more crafty.

21. If I could have one day of feeling normal again I would:
Do everything that I normally can’t do.

22. My illness has taught me:
I am stronger emotionally than I’ve ever given myself credit for in the past. Also it has taught me to have patience with myself and others. Other things are how lucky I am to have such a wonderful family and best friend as well as how many of the little things in life I took for granted before I was sick. Lastly (for this short list anyway) I have learned how helpful pets can be when it comes to dealing with an illness that can make me feel pretty lonely at times.

23. Want to know a secret? One thing people say that gets under my skin is:
If you lose weight, you will be all better or you just have to stop being so lazy. Also, when people walk too fast for me to keep up and don’t slow down, even after I politely ask them to.

24. But I love it when people:
Slow down and walk with me without me having to ask, want to learn what they can about RA so that they can understand what I’m dealing with, and don’t make me feel guilty if I have to back out of plans last minute.

25. My favorite motto, scripture, quote that gets me through tough times is:
“Being challenged in life is inevitable. Being defeated is optional.” –Unknown

“For everything this disease has taken, something with greater value has been given – sometimes just a marker that points me in a new direction that I might not otherwise have traveled. So, sure, it may be one step forward and two steps back, but after a time with Parkinson’s, I’ve learned that what is important is making that one step count; always looking up.” – Michael J. Fox (Always Looking Up: The Adventures of an Incurable Optimist)

26. When someone is diagnosed I’d like to tell them:
Having RA can be hard, frustrating and depressing but staying open with friends, family, and doctors and trying to stay positive is important. Seek out support online as well as in person from those who have been dealing with the disease as it is helpful to have someone who understands what you’re going through.

27. Something that has surprised me about living with an illness is:
Having any chronic illness is more complicated than it seems as well as more frustrating than I could have ever imagined. I’ve also learned how important it is to learn everything I can about my disease process and be an advocate for myself.

28. The nicest thing someone did for me when I wasn’t feeling well was:
For my birthday a few years ago my mom and sister gave me a pen which was hand made from stone by a man suffering from arthritis. They made sure it included a soft grip and was thick enough that it would be easier for me to write with even when my hands were sore. The thoughtfulness that they put into the gift made me cry.

29. I’m involved with Invisible Illness Week because:
I will hopefully be involved this year because I feel it’s important to shine a light on invisible illness and also learn what I can do to help myself and others.

30. The fact that you read this list makes me feel:
That you’re probably really bored (just kidding)! Actually that maybe people are interested in learning more about what it’s like to have a debilitating invisible illness and/or how to cope with having one.

1 comment:

  1. Wow! 30 things really struck home fore me. Wonderful post and even with ra myself, I found it enlightening. Thanks for sharing with us.