2 years ago
danidee
in English · 5,018 Views
likes 12clips 1comments 7
30 Things About Living With RA: Invisible Illness Awareness Week
So this week is Invisible Illness Awareness Week, and @ButterflyBlu has begun this really cool 30 question survey open to anyone here who is willing to share their own personal experience with an invisible illness. (If you'd like to read hers about living with Fibro Myalgia, Narcolepsy, and Chronic Pain, click here!)
I have had Rheumatoid Arthritis for about six years now, and while there's no cure, I do feel like I'm at a stage where I've managed it pretty well, and hope that sharing my own story about RA will help other people who might also have an autoimmune disease feel encouraged!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid Arthritis (categorized as 'Rhupus' by rheumatologists because it overlaps a lot with systemic lupus).
2. I was diagnosed with it in the year: 2010.
3. But I had symptoms since: The summer of 2009.
4. The biggest adjustment I’ve had to make is: Being okay with not being okay. I think it's hard to admit to yourself that you just need a time out, especially when you're in your 20s and a lot of your friends are still at the age where they can 'go hard'.
5. Most people assume: That I'm lazy and have simply 'made up' my condition.
6. The hardest part about mornings is: Morning stiffness. Mornings are the hardest part of the day for people with RA because you tend to wake up with 'stuck' and swollen joints, each with their own range of pain. Most days I can get out of bed alright, but other days my hips/knees/spine might make that a little harder to do!
7. My favorite medical TV show is: I actually hate medical TV shows, especially House because every time someone shouted 'IT'S NOT LUPUS!' to me, I wanted to punch them in the nose.
8. A gadget I couldn’t live without is: Anything that helps me open jars and bottles, even if that 'gadget' is just a helpful friend with a strong pair of hands. (Thank you!)
9. The hardest part about nights are: Nights are much easier compared to mornings. Nothing is more satisfying than laying down and letting all your joints rest at the end of the day. When you have an autoimmune disease, your immune system is working all of the time, so when you're tired at the end of the day, you're really, really tired!
10. Each day I take 1 pill (Plaquenil) & 1 vitamin (Omega-3). I also take NSAIDS as needed. Naproxen for mild pain, Nabumetone for moderate pain. I had 7 different prescriptions when I was first diagnosed, including Prednisone, Methotrexate, and Enbrel biologics, but the side effects of all of them were too scary and harsh on my body to continue, and I was weaned off under medical supervision.
11. Regarding alternative treatments I: prefer them over the current therapies available for autoimmune diseases. The ones out these days are really rough!
12. If I had to choose between an invisible illness or visible I would choose: Invisible! It gets really frustrating to convince people that I have a condition to take seriously, but at least I am able-bodied enough to go about my day with people not noticing something's off.
13. Regarding working and career: Statistically, RA patients are said to only have 20 years left before their bodies will force them into disability. When I was diagnosed (at 24), that made me really nervous, but I believe that my condition is common enough that there will be better technology in the 15 years I 'have left' that will enable me to have a long career.
14. People would be surprised to know: That there is a difference between Rheumatoid Arthritis and Osteoarthritis (aka what old people have). Osteoarthritis comes with old age and is a bit of a 'wear-and-tear' joint condition, where RA has a lot more to do with my glitchy immune system thinking my healthy joint cells are virus cells that it needs to fight.
15. The hardest thing to accept about my new reality has been: Sleeping when my body says sleep, asking for help when help is needed, admitting to others and myself that I have limits that weren't otherwise there.
16. Something I never thought I could do with my illness that I did was: Drink alcohol! I was on so many nasty prescriptions when I first got diagnosed, I thought that meant the party was over, but Plaquenil has been such a help.
17. The commercials about my illness: Make me grateful there's options out there that can help people with advanced stages of RA do the same things they always loved doing, even if the side effects seem abnormally harsh.
18. Something I really miss doing since I was diagnosed is: Playing my violin for more than 20 minutes, drawing and creating art for hours at a time, going bowling, going clubbing out late with my friends, standing for more than 20 minutes at a show, wearing high heels.
19. It was really hard to have to give up: My art school education. I was in the middle of a studio art program at the local art school and had to leave when the pain of my RA was keeping me from being able to take on a full courseloads of painting, sketching, and sculpture.
20. A new hobby I have taken up since my diagnosis is: Using scissors to cook! Hey, you know what's better than killing you wrist chopping scallions? Cutting them with a pair of kitchen scissors. Maybe just as fun as paying an extra dollar to spring for pre-chopped garlic and packages of diced onion.
21. If I could have one day of feeling normal again I would: Do a whole lot of push-ups, paint a mural on my wall, run up flights of stares, and stand for a favorite band's 2-hour concert.
22. My illness has taught me: That I'm not some immortal, invincible young person, and I need to take care of myself and listen to what my body needs me to do!
23. Want to know a secret? One thing people say that gets under my skin is: "I think my grandma has that!" (2nd place: "But you're so young!" 3rd place: "Have you tried chondroitin? How about glucosamine?")
24. But I love it when people: Ask me if I'm okay or offer help, especially when it's obvious I'm struggling that day.
25. My favorite motto, scripture, quote that gets me through tough times is: "Advocacy is a passion, not a pastime." -- My Dad :) When I was growing up, my parents had their own cancer advocacy organization, and believed that the best thing a person in a crappy situation can do is share their experience with others in hopes of educating others and encouraging people in the same situation.
26. When someone is diagnosed I’d like to tell them: It'll be okay! Try different methods of pain relief - from acupuncture to a great pair of shoe insoles - and find out which ones work best for you. Once you know how to manage your pain, this will get a whole lot easier!
27. Something that has surprised me about living with an illness is: That even if there's no cure for it, you'll discover so many therapies that can help you get a lot of 'normalcy' back into your life. I'm fortunate that even though RA can be difficult, it does not define my life.
28. The nicest thing someone did for me when I wasn’t feeling well was: Drive over 45 minutes just to show up to my house with a dozen bagels, cream cheese, and some fresh orange juice. (And no, you can't have her. She's MY best friend.)
29. I’m involved with Invisible Illness Week because: Living with an invisible illness is incredibly hard when you're surrounded by people who don't believe it exists just because you look well enough, and if you're in that boat, I'd love to talk!
30. The fact that you read this list makes me feel: Like I was hugged by fluffy angels made of cotton candy, sponge cake, and Snack Pack pudding. (Not really. I just couldn't really think of a response to this one.)
danidee clipped in 1 collections
7 comments
View more comments
@ButterflyBlu AHH STACEY!!! I'm glad that we met each other too! And lol, we need to trade more 'low-impact cooking' tips because I love cooking but when my hands are hurting, everything comes out so sloppy. Getting things as pre-prepared as possible before I go in to cook usually helps me a lot.
@danidee we should!! You know I HAVE to feed the Giant in Training. Seriously!! It's shocking. I totally thought they feed themselves! He expects to eat 3 TIMES A DAY and stuff!!! /faint ;) Yes, you totally have to get everything together and organized. It simply makes life easier. I love to cook, too. We just have to be smarter about it. ;)
@ButterflyBlu Have you tried anything supplement wise as far as Omega-3s or Fish Oil or anything for your fibro? I know that my doctor had me taking 6 - 8 grams of the stuff a day in the beginning, but now I just try to eat a lot of fish.