• Day 1 National Invisible Chronic Illness Awareness Week: 30 Things Survey

Day 1 National Invisible Chronic Illness Awareness Week: 30 Things Survey

Today is Day 1 of National Invisible Chronic Illness Awareness Week! To start off the week, I’ve completed the 30 Things About my Invisible Illness You May Not Know survey.

I hope you join me by copy and pasting the survey and filling it out on your own blog OR posting it as a Disqus comment below.

Send me your username/the link to your post and I’ll list it here for others to read!

Don’t forget to share you URL’s on twitter, #iiwk12

1. The illness I live with is:
Scoliosis, Rheumatoid Arthritis vs. Still’s Disease… Fibromyalgia, chronic pelvic pain (still trying to determine if Endometriosis or Polycystic Ovarian Syndrome), Pelvic Floor Dysfunction, migraines; in the process of being evaluated for Cushing’s Disease. Still a big question mark with Lupus, too.

I also have a genetic mutation that is found where most mutations there indicate a disease called TRAPS, but my mutation is so rare that TRAPS has not been directly linked to this one mutation. So we don’t know the implications of this yet.

2. I was diagnosed with it in the year:

2001-present.

3. But I had symptoms since:
I can remember having joint pain at age 5. I was constantly sick and could never fight anything off.

4. The biggest adjustment I’ve had to make is:
Accepting a different life for myself than I had imagined and respecting the new limits my body has created for me.

5. Most people assume:
That because I look fine, I am lazy, drug-seeking, lying and using a handicapped sticker illegally, or completely fine. Or, people assume that because I’m wearing a sweater to avoid being exposed to the sun that I am hiding something (self esteem issue with my weight, self injury, etc). I’ve had people ask why I limp, but have not heard their assumptions yet.

6. The hardest part about mornings is:
Waking up from the second I open my eyes and every movement after that. Uncurling my hands from their stuck, claw-like position and forcing my locked ankles to move is equally hard as waking up.

7. My favorite medical TV show is:
Grey’s Anatomy, House MD, HawthoRNe, Mystery Diagnosis. I am very much aware that the first three are unrealistic.

8. A gadget I couldn’t live without is:
Computer.

9. The hardest part about nights is:
trying to sleep more than 3 hours and finding a comfortable position despite insomnia, pain, muscle twitching, fevers, etc.

10. Each day I take __ pills & vitamins.
10+

11. Regarding alternative treatments I:
I tried acupuncture and hated it too much to try it again. I am open to the idea of alternative medicine combined with modern medicine, but I do not believe it can or should replace modern medicine with the diseases I’m facing.

12. If I had to choose between an invisible illness or visible I would choose:
I live with both and do not think one is worse or better than the other; they both have pro’s and cons.

13. Regarding working and career:
My life has changed drastically. I can’t handle more than 12 credit hours at a time, have had to give up my dream of medical school, changed my major, and am currently unable to work at all.

14. People would be surprised to know:
that just because I have a smile on my face does not mean I’m feeling well or I am out of pain. So please don’t assume this to be the case.

15. The hardest thing to accept about my new reality has been:
Everything. Everything I do requires conscious thought and that is a hard concept to grasp if you don’t experience it first hand. It was hard to accept my new limitations, both physical and mental, and accepting that none of my conditions currently have a cure.

16. Something I never thought I could do with my illness that I did was:
Find a new passion in helping other patients become patient advocates and activists, write a book worthy of being published.

17. The commercials about my illness:
The ones for Fibromyalgia are not too awful. I think they get across the point that it’s a chronic pain condition. There is one for migraines that shows a woman unable to get off the couch, so that’s pretty accurate too. The ones for Rheumatoid Arthritis are laughable and pathetic; if opening a jar at age 65 was my biggest problem I would be the happiest person alive. Rheumatoid Arthritis/Still’s Disease =/= Arthritis. Stop using the A-word.

The Lupus commercials convey that it’s a serious disease and that it’s not rare (“Someone you know has Lupus”), but are not adequate in explaining what it is.

There are no commercials for TRAPS, Endometriosis, PCOS, Pelvic Floor Dysfunction, Cushing’s Disease, or Scoliosis.

18. Something I really miss doing since I was diagnosed is:
Working out the way I used to, being able to chew without awful noises from my jaw ruining my appetite, being able to concentrate and think through difficult analytical/complex concepts without struggling with basic comprehension; being able to pick a major/career because I simply wanted to; being able to have a normal sex life and relationships without bringing a burden to a new partnership.

19. It was really hard to have to give up:
Medical school, mobility and some of my independence, the ability to drive seven hours without assistance; the ability to make any movement or choice without first consulting my body.

20. A new hobby I have taken up since my diagnosis is:
Cooking, cake decorating, and blogging.

21. If I could have one day of feeling normal again I would:
Work out for two hours, go dancing, get a massage, cook dinner for all of my friends and family :) Cherish the day and take lots of pictures.

22. My illness has taught me:
Who my real friends are, what kind of people I want/don’t want in my life and how to rid my life of negative people, that personal growth is always possible with hard work , and that you I do something useful despite these circumstances. I learned that it’s okay to go at your own pace and how to put myself first.

23. Want to know a secret? One thing people say that gets under my skin is:
“Can’t you just take a pill and keep going?” “Why are your arms bright pink?” “Ohhhhh you mean arthritis! Yeah I have that in my pinky, see? Right here. Have you tried Aleve?” and my least favourite three words: “Can’t you just…” No, if I could just, you wouldn’t have to ask.

24. But I love it when people:
respect my limitations; treat me as they did prior to my diagnoses; park close to our destination when we go out; offer specific help or go out of their way to help me without asking.

25. My favorite motto, scripture, quote that gets me through tough times is:
Too many to choose just one. I post relevant quotes here via the quote tag.

26. When someone is diagnosed I’d like to tell them:
Trust your gut, find something you enjoy to distract you when you need it, hold onto or find your sense of self and don’t let go, get involved (if you can) and get educated about your disease(s) and resources available, and to give yourself time to adjust and go through the stages of grieving life before disease.

27. Something that has surprised me about living with an illness is:
how drastically my perspective of the world and my peers changed. I didn’t know these illnesses could make me a better person, but they have.

28. The nicest thing someone did for me when I wasn’t feeling well was:
A friend of mine who knew I couldn’t cook for myself brought over up dinner (plates, food, everything), ate with me, and then cleaned it up and hung out for a bit to keep me company on a bad day. This same friend once picked up medicine for me when I was desperate and couldn’t drive, and also surprised me with the sweetest card and stuffed animal the day I left for the Mayo Clinic.

I have another friend who sent me a book of inspirational quotes after my surgery that she had used to cope with her own medical issues. I keep it next to my bed and will always appreciate that gift more than I think she realizes. They both read this blog so here’s to Stephanie and Loreal. I hope everyone reading this has a Steph and Loreal in their lives :)

29. I’m involved with Invisible Illness Week because:

There is so much ignorance about invisible conditions, particularly Autoimmune Arthritis, that I feel like I have to do my part to shine a light on the condition and do what I can to make my life and the lives of other patients a little easier. And that means educating others and spreading awareness through great events like this one.

30. The fact that you read this list makes me feel:
Grateful and flattered. I’m constantly humbled when I see how many people read, reblog, and comment on my posts.

Have you posted your Invisible Illness Week survey yet? Send me your username/the link to your post and I’ll list it here for others to read!