06 12 / 2013
07 11 / 2013
What does it mean when you have Rheumatoid Arthritis? Someone asked me a month ago. Took me this long to formulate a proper response.
Having RA means planning ahead. Planning your meals because most of your meds require you eat beforehand. Planning around any injections or infusions you may need. Planning on how long you will be able to stand or walk. Planning on whether you will need your cane or rollator or both.
It means going clothes shopping and looking for things that don’t have too many buttons or aren’t too tight because you may need to get out of it all by yourself and you know you’ve gotten stuck in a shirt or dress before.
It means going shoe shopping and immediately going past all the cute dress shoes to find something that’s comfortable and wide enough that when your feet swell, it’s not crushing your foot.
It means bypassing those salty treats because you know the salt will make you swell more and you’re already more swollen than you’d like to be.
It means waking up in the night because the shoulder you were sleeping on is now very painful and you need to change your sleeping position. Repeat this process for different joints another two to three times throughout the night. Don’t forget to take at least a half hour to fall back asleep each time.
It means using the handicap bathrooms when you’re out in public because once you used a “normal” stall and the toilet was so low to ground you had trouble getting off of it and you’re not taking that chance again (handicap toilets are higher off the ground).
It means using your handicap placard for parking, because even though you’re only 32, in the last 3 years your feet, ankles, knees and hips have taken a real beating from the RA and you can’t walk or stand for nearly as long as you used to be able to.
It means you have a chronic, painful disease that very few people understand and “get”.
It means that you often end up doing what you are able to do and not necessarily what you want to do.
It can also means some good things, like I’ve written about before.
Being chronically ill means you will quickly find out the character of those around you. And if you’re lucky, you’ll discover you know some pretty amazing people.
03 11 / 2013
02 10 / 2013
"It was once said that the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped."
02 9 / 2013
1. The illness I live with is: Rheumatoid Arthritis (plus bursitis, sicca, and Raynaud’s)
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 2008-ish?
4. The biggest adjustment I’ve had to make is: Pacing myself and having to say ‘No’ to certain activities.
5. Most people assume: I honestly have no idea. I don’t worry about it. I do gets looks when parking in handicap spaces sometimes.
6. The hardest part about mornings is: Moving my body and holding my toothbrush.
7. My favorite medical TV show is: Not really into them. I like NCIS, Criminal Minds, Bones and The Big Bang Theory (among others).
8. A gadget I couldn’t live without is: My cane and my shower seat.
9. The hardest part about nights is: Finding a comfortable sleeping position.
10. Each day I take __ pills & vitamins. (No comments, please): Minimum of 10 - 14, depending on the day. Doesn’t include pain meds.
11. Regarding alternative treatments I: have tired MANY and had very, very few work.
12. If I had to choose between an invisible illness or visible I would choose: Invisible I guess. They both have their ups and downs.
13. Regarding working and career: It’s difficult, no question about it. I just keep on keepin’ on and hope I get through the day.
14. People would be surprised to know: I’m in pain all the time. ALL the time.
15. The hardest thing to accept about my new reality has been: Uh yeah, that would be that I’m in pain ALL the frickin’ time.
16. Something I never thought I could do with my illness that I did was: Continue working full-time and travel.
17. The commercials about my illness: Piss me off. I have been known to yell at the TV.
18. Something I really miss doing since I was diagnosed is: Walking until I was done, mentally, not physically.
19. It was really hard to have to give up: Being as physically active as I used to be.
20. A new hobby I have taken up since my diagnosis is: Crocheting.
21. If I could have one day of feeling normal again I would: Try to run. I used to really like running.
22. My illness has taught me: That you don’t have to be “healthy” to be happy.
23. Want to know a secret? One thing people say that gets under my skin is: ”You must be doing good because you look good.” Don’t assume. I have really good pain management skills so it’s fairly easy for me to look “good”.
24. But I love it when people: Offer to help with something or come visit me on weekends when I’m just done (physically).
25. My favorite motto, scripture, quote that gets me through tough times is: This is likely not verbatim as I haven’t read her book in a while, but - ”My body is sick, I am not sick.” - Toni Bernhard
26. When someone is diagnosed I’d like to tell them: Watch funny movies/tv shows, read funny books, hang around funny people because FUNNY will get you through.
27. Something that has surprised me about living with an illness is: It’s VERY expensive.
28. The nicest thing someone did for me when I wasn’t feeling well was: Derek helps me get dressed and undressed, does up my pills for me, etc, etc.
29. I’m involved with Invisible Illness Week because: Well, seemed like a good idea.
30. The fact that you read this list makes me feel: Warm, fuzzy feelings. ;)