Invisible Illness Week

Alright, officially Invisible Illness Week was Sept 9-15th, but better late than never, right?

1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: probably 2010
4. The biggest adjustment I’ve had to make is: listening to my body and taking it easy when I’m in pain or fatigued.
5. Most people assume: they know what Rheumatoid Arthritis is, but they’re usually thinking of Osteoarthritis.
6. The hardest part about mornings are: I move a little slower than I used to. AND remembering to take my vitamins.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: Oxo Good Grips kitchen tools and my grip jar opener
9. The hardest part about nights are: when fatigue equals a busy mind and insomnia, not sleep.
10. Each day I take 6 -14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: will try anything. Personally, yoga, acupuncture and changing my diet (no gluten, less dairy and sugar, more veggies) help a lot. If I could afford it, I would get massages more often.
12. If I had to choose between an invisible illness or visible I would choose: I’m a private person, so probably invisible.
13. Regarding working and career: I’ve kept my career, but I’ve embraced (and have been blessed with an office that embraces) a flexible schedule. This lets me start my mornings slower or work from home when I need to.
14. People would be surprised to know: how bad my symptoms were before I went to the doctor. I was really good at the “grin and bear it” denial technique.
15. The hardest thing to accept about my new reality has been: that this disease is chronic. When I was diagnosed I thought I would be the exception to the rule and go into remission within the year. This hasn’t been the case.
16. Something I never thought I could do with my illness that I did was: RUN a marathon.
17. The commercials about my illness: feature older people golfing and make me roll my eyes.
18. Something I really miss doing since I was diagnosed is: going out for a night drinking with my friends. This is a double no for me because the drugs I take (methotrexate) are hard on your liver and I try to be kinder to my body these days.
19. It was really hard to have to give up: alcohol (see above) and high heels. I still indulge in both on occasion.
20. A new hobby I have taken up since my diagnosis is: blogging!
21. If I could have one day of feeling normal again I would: go-go-go ALL day long – run, climb, dance, party. I’d wear high heels. I’d stay up all night. I wouldn’t even give a passing thought to “paying for it” the next day or even week.
22. My illness has taught me: I’m stronger than I think and everyone is going through something, so be patient and kind with yourself and others.
23. Want to know a secret? One thing people say that gets under my skin is: “But you’re too young to have arthritis!” If this were true, I wouldn’t have it and hearing this just makes me feel ashamed and misunderstood.
24. But I love it when people: ask me sincere questions and want to know more about RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have two I come back to: “Never, never, never give up.” – Winston Churchill; and “So it goes.” – Kurt Vonnegut
26. When someone is diagnosed I’d like to tell them: It’s tough, it’s scary, it sucks. It will get better. You will feel better than you do today.
27. Something that has surprised me about living with an illness is: the supportive community of people I’ve met (mainly through online support groups).
28. The nicest thing someone did for me when I wasn’t feeling well was: just let me cry and then ordered me Chinese food in bed and hung out all day, watching funny TV shows.
29. I’m involved with Invisible Illness Week because: I think awareness of invisible illnesses is important to funding research and finding cures.
30. The fact that you read this list makes me feel: honored and vulnerable

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  1. #1 by John on September 25, 2013 - 7:00 am

    I have a chronic illness which I’ve had for over 30 years so I know where you’re coming from. 🙂

    • #2 by My RAD Life on October 8, 2013 - 5:20 pm

      I didn’t realize that! You rock – you’re such an inspiration with all the training/fitness/running you do!!

  2. #3 by Jim Brennan on September 27, 2013 - 5:40 pm

    Not only strong, but courageous. You are more courageous than I.

  3. #5 by Cammy on October 10, 2013 - 5:05 pm

    HI RAD LIFE! I just wanted to let you know how happy I am that I found your blog! It am 52 and was shocked with my diagnosis! I thought my feet were killing me because of my many fabulous shoe choices! but, after many doctor visits, inserts and foot doctor visits FINALLY after breaking into tears in my doctors office a BLOOD TESTS was done and BOOM it was RA! Appreciate your blog as anything I have opened online has been negative and scary and brought me to tears! Thanks for breaking ALL of the emotions down. I feel the same”

    • #6 by My RAD Life on October 11, 2013 - 9:37 pm

      Thanks Cammy! I’m so glad you got the correct diagnosis and my blog has helped. I hope that your treatment is helping. Knowing that you have many of the same feelings as I’ve expressed in my blog makes me feel less alone as well. 🙂

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