4-30. I've been too sick to update every day, so here are the rest of my answers in one shot.
4. The biggest adjustment I’ve had to make is: Reevaluating my life, really. I’m a planner. I like set times and dates, I like to be the one driving and in control of my whereabouts, I like to be in control of myself, honestly. Chronic illness takes that control away and has forced me to become much more relaxed and laid back, and definitely more flexible. Reevaluating my career goals has been difficult and taking two semesters off from school was not what I expected. I’ve watched so many people I thought were friends walk out of my life because of this illness. So many people I thought would stop by and help me out that became strangers. I’ve rid my life of all negative influences and that has decreased my stress level, but it hasn’t been easy.
5. Most people assume: That I’m lazy, boring, or not in as much pain as I actually am. That I don’t need help. That advil and exercise will cure me. That my joints are the only part of my body affected by my diseases. Foolish things.
6. The hardest part about mornings is: uncurling my hands. I usually sleep with my hands balled into fists, so when I wake up moving them is extremely difficult and painful. Sometimes my joints get ‘stuck’ and I usually wake up with a fever.
7. My favorite medical TV shows are: Mystery Diagnosis, House, and HawthoRNe.
8. A gadget I couldn’t live without is: the AC unit in my room to keep my fevers down, my bottle/jar opener, easy-off prescription caps, and my wrist braces.
9. The hardest part about nights is: falling asleep, staying asleep, or finding a comfortable position. Even with Trazadone (sleep aid) or pain killers, it’s almost impossible to sleep normally.
10. Each day I take __ pills & vitamins: 10?
11. Regarding alternative treatments I: have tried acupuncture and hated it. It gave me horrific migraines after each session. I stay away from foods that can increase inflammation, though I wouldn’t call that alternative, I’d just call that healthy. I take fish oil and other vitamins as well to decrease inflammation and help with fatigue and all things related to having low vitamin D and B12.
12. If I had to choose between an invisible illness or visible I would choose: Neither? I don’t know. Some days my diseases are invisible, other days it’s pretty obvious something is wrong. I don’t have a choice, so does it really matter?
13. Regarding working and career: I am currently unable to work a typical job, but I have been recently hired to sell my jewelry for a salon and am branching out to other shops as well. Putting off applying for temporary disability as long as possible. I’ve wanted to go to medical school and pursue my dream of being a physician since I can remember, but now I am being forced to seriously reevaluate what I am physically capable of doing. I am considering going into neuropsychology instead and though I know I could be happy in such a field, it will be devastating if I have to surrender to my disease and give up my dream.
14. People would be surprised to know: that my RA does not just affect my joints and it is not a disease of the elderly, that FMS is not a psychological disorder (though it can be triggered by trauma), basically that my autoimmune diseases are legitimate and not what the commercials show — horrible misconceptions.
15. The hardest thing to accept about my new reality has been: Everything? I have had to reevaluate my entire life. It is hard to accept I will live with these conditions forever. There are no cures for any of the diseases I have. Though they can be managed with the right drug cocktail (and by managed I mean supposedly tolerable) they are chronic, progressive, and incurable. Facing my mortality, essentially, has been both terrifying and yet it has enriched my life significantly.
16. Something I never thought I could do with my illness that I did was: Find a doctor who would listen to me. I am seronegative (false negative blood results) and I went years complaining of migraines, fatigue, swelling of my glands, constant infections, etc. until finally someone put all the pieces together. I wasn’t sure I’d ever get to a diagnosis and I am eternally grateful for my wonderful physician.
17. The commercials about my illness: are preposterous. For the record: RA is not an elderly disease. Most people with RA (or the ones I know of) are not nearly as active as the people on the commercials are. The commercials only touch on the joint damage, but none discuss the crippling pain or systemic aspect of the disease. Similar with Lupus commercials, the diseases are not at all appropriately portrayed.
18. Something I really miss doing since I was diagnosed is: just going through an average day without struggling. It’s been three years since I can remember a day without pain and some level of fatigue.
19. It was really hard to have to give up: the life I thought I would and could have, and everything about the life I had prior to all things autoimmune. While most of my peers are worrying about rent, boys, school, or trivial matters, I’m on a completely different plane of existence worrying about making it through the next hour. It makes it difficult to relate to my friends.
20. A new hobby I have taken up since my diagnosis is: I’ve designed jewelry for years now, but up until recently I was on a one-year hiatus. Despite my hands being affected by my disease, I’ve picked up that hobby again. Outreach in the community, blogging and advocating for autoimmune awareness.
21. If I could have one day of feeling normal again I would: sob tears of joy, make my bed, clean everything, have rough sex, dance, go to the beach, and just enjoy my day.
22. My illness has taught me:: to enjoy the little things; how to have a voice and advocate for myself; how to relax and be more laid back; strength.
23. Want to know a secret? One thing people say that gets under my skin is: “Try healing crystals,” “Have you tried Aleve? That’s for arthritis, right?” “Oh my grandmother has that!” “I wish there was something I could do” — Newsflash: there is something you can do, healing crystals will not cure me, and Aleve is used for osteoarthritis and that is likely what your grandmother has.
24. But I love it when people: stop by when I’m clearly stuck in my house like I have been, offer to cook, clean, or bring something by to make me smile. Just little things like offering to drive when we go out, parking in a close spot— that kind of thing. It really is all about the little things.
25. My favorite motto, scripture, quote that gets me through tough times is: “What matters most is how well you walk through the fire.” — Bukowski
“Face forward, move slowly, forge ahead” — Guster
“Success is not final, failure is not fatal; it is the courage to continue that counts” -W. Churchill.
That last one was my seniour quote and I absolutely love it.
26. When someone is diagnosed I’d like to tell them: to take care of their emotional well being as well as their body first and foremost. Give yourself time to come to terms with the diagnosis and that it is normal and healthy to go through stages of grief. They will eventually come to realize that they have a choice to make; they either have the disease, or the disease has them. It’s takes conscious effort to not let yourself be swallowed up. I wrote an entire post for the newly diagnosed a while ago.
27. Something that has surprised me about living with an illness is: how many people there are in the same position, how strong I have become, and how little education and awareness is out there for these diseases. It’s no surprise we have not come closer to a cure considering the lack of discussion.
28. The nicest thing someone did for me when I wasn’t feeling well was: basically drag me through seniour year. My ex was honestly a saint through my last year of high school and despite our rough ending, I will be forever grateful for her patience and all that she did for me through that time. I have had a friend quite as giving as she was for that year.
29. I’m involved with Invisible Illness Week because: it’s time we start talking about what it means to have an invisible illness and what people can do to help. There is not enough help, not enough education, and hardly any accurate awareness or representation of these conditions.
30. The fact that you read this list makes me feel: grateful :) Especially since many of my friends will read this— hopefully you understand me (and anyone else in your life suffering from a similar condition) more than before, and what it means to have you involved during this time.
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