Saturday, September 19, 2009

Invisible Illness Week - RA


1. The illness I live with is: Rheumatoid Arthritis, Sjogren's Syndrome (does craziness count as invisible....)

2. I was diagnosed with it in the year: 1972

3. But I had symptoms since: I would figure probably since I was born, I started to limp at two

4. The biggest adjustment I’ve had to make is: Learning to adjust to what my body is willing to do instead of what my mind wants it to do.

5. Most people assume: That I'm lazy or to young to have these kinds of issues...even some of my doctors. If I had a dollar for every time heard a doctor say your to young, I'd be rich.

6. The hardest part about mornings are: Getting out of bed. Who would have ever thought putting your feet on the ground could be so painful?

7. My favorite medical TV show is: Grey's of course...followed closely by Private Practice.

8. A gadget I couldn’t live without is: Hmm, ace bandages, my snazzy pink cane, followed closely by my ice pack or heating pad.

9. The hardest part about nights are: Getting comfy enough to fall asleep...and then stay asleep. Thank you Ambien...and the duct tape to keep me fom sleepwalking.

10. Each day I take __ pills & vitamins. (No comments, please) I'm down to 6 prescriptions from 12...go me!!

11. Regarding alternative treatments I: Think they are the greatest thing since sliced bread. I think mainstream and alternative treatments together make a great marriage...

12. If I had to choose between an invisible illness or visible I would choose: Not sure, either one sucks...

13. Regarding working and career: I'm a stay at home mom and some times by the time dinner rolls around I want to crawl to the kitchen but I push through...because that's my job. You know, besides watching soap operas and eating bon bons.

14. People would be surprised to know: I love to exercise and it's one of the things I hate to give up the most when I'm flaring. I'm at my best physically and emotionally when I can get on my bike and ride for an hour.

15. The hardest thing to accept about my new reality has been: Adjusting activity as my illness increases. I just hate to give up anything....

16. Something I never thought I could do with my illness that I did was: Parasail...I was sure it would be more painful to my joints then it was...thank goodness, because it was fun.

17. The commercials about my illness: Don't really do the disease justice. If taking a shot made me 100% better, that would be awesome, but yeah, not so much.

18. Something I really miss doing since I was diagnosed is: Walking as much as I want to.

19. It was really hard to have to give up: Gluten...seems like something is always missing from my food...oh yeah, it's FLOUR.

20. A new hobby I have taken up since my diagnosis is: Well, since I was diagnosed at two maybe drinking out of a cup? I have lots of good hobbies like...piano, blogging, reading, yoga, pilates, biking....17 at my last count...

21. If I could have one day of feeling normal again I would: One day would never be enough. And I've been lucky to have a few long remissions...during which time I just lived a normal life...who could ask for more...we all want normal.

22. My illness has taught me: Some times life just ain't fair. It's what you do with the cards you're dealt that matters.

23. Want to know a secret? One thing people say that gets under my skin is: Your to young (as I mentioned earlier) but my favorite was said by my doctor last year, "RA sucks..." Uh, thanks Sherlock...that's news.

24. But I love it when people: Realize that I'm making the effort. Sometimes it's not easy and I would like to stay in bed and yet I get up every day to enjoy things with my family. It's big when someone validates that.

25. My favorite motto, scripture, quote that gets me through tough times is: It is what it is...sometimes when we accept this is just what we have to deal with, it makes it easier to get on with it.

26. When someone is diagnosed I’d like to tell them: Now is the best time to have RA (if you have to) the medications they've come out with in the past 10 years are AMAZING...and then add alternative options and if there is ever a time to have RA it's now (and then they punch me in the head and call me Pollyanna.)

27. Something that has surprised me about living with an illness is: It's never far from your mind. So many things revolve around how you are feeling at any one moment...it's a lot harder to plan for than I thought.

28. The nicest thing someone did for me when I wasn’t feeling well was: I'm pretty easy...just a call can make my day. Though my mom did make me dinner not to long ago when I got out of the hospital...that was pretty awesome.

29. I’m involved with Invisible Illness Week because: I think educating people about ALL invisible illnesses (and believe me, there are A LOT) is worth 5 minutes of my time. And when you are giving me the evil eye for parking in a handicap space, know that those extra 5 steps could mean the difference between shopping and not shopping for me. (Though that was back when I had a handicap tag....now I just schlep from the back 40 like all the rest of you poor people.)

30. The fact that you read this list makes me feel: Hopeful...

7 comments:

Crazymamaof6 said...

way to go! you are awesome for participating. and spelling it out.
and WHOOHOO for less prescriptions that's awesome! i struggle to take my daily pills and it's nowhere near 6. ok i suck at taking pills. i bow down to you.

and WHOOHOO for alternative medicine giving you a measure of relief.

and least fave phrase out of my Dr. or surgeons mouth ever. "YOU ARE YOUNG". blech. i so wanted to flip anyone that said that to me the BIRD!

Living It, Loving It said...

I hate number 5 too. Sometimes, my own family doesn't get what I am going through. They treat my RA like "regular" athritis. They do not know how much I struggle on a daily basis.

Flea said...

I just finished reading The Bone Collector. Thought of you while reading it. So why aren't you on the police force, woman?

Are You Serious! said...

♥ AWESOME!! I love 26! You always crack me up, Pollyanna! :)

I never thought about RA as invisible but it's so true... I think that would add an extra level of "hardness"...

Fishsticks and Fireflies said...

Very cool! What an awesome way to bring more awareness to RA. I can only imagine what you go through on a daily basis, but I know you are trying, and I am always thrilled to read when you have made a giant leap forward (as well as when you have made a tiny step forward, or when you have taken a step back - you are human!)

Laura said...

You are an inspiration to me.

HUGS.

Burgh Baby said...

You rock.

Can I change the subject and talk about Violet's baby? Who do you think is the dad? See, now that fall is upon us, all I can think about is TV.