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Okay, the week to do this was Sept. 11 - Sept. 18th, but I got sick and didn't know about it anyway. So here's my list for those who are curious about why I live on SSI and work toward becoming self supporting again on fiction, nonfiction and art:

1. The illness I live with is: Fibromyalgia - plus right side hemi-hypoplasia, scoliosis, asthma and arthritis. You would think that scoliosis and right side hemi-hypoplasia aren't invisible. That medical mouthful means that my right leg is 3cm shorter than the left - my entire right side is two sizes smaller and weaker than the left. Yet that was invisible too despite a limp and the fact that I can only walk a quarter the speed of anyone else my height. People see what they're told to see, they respond to labels rather than reality.

2. I was diagnosed with it in the year: 2003 for fibromyalgia. 1998 or 99 for right side hemi-hypoplasia. 1970 for the scoliosis when I bent over in high school to pick up some books, my back spasmed and I couldn't get up.

3. But I had symptoms since: the earliest that I can remember. I had no idea other people weren't struggling with the same levels of pain and debility I did. I thought they were just tougher and put up with it better.

4. The biggest adjustment I’ve had to make is: accepting that fibromyalgia is incurable. There is no "someday I'll work out and get strong."

5. Most people assume: that I'm about four inches taller than I really am and about 30 pounds lighter. That's half personality and half scoliosis. I found out only a few years ago that scoliosis adds 25 to 30 pounds of extra bone density. It's the reason I flunked swimming three years in a row as a kid - I couldn't float. Fortunately the fourth summer swim teacher watched me sink in the deep end (every year I got thrown in the deep end to prove to me that I could float if I wanted to), fished me out and taught me to swim so that I wouldn't drown if someone pitched me in the deep end.

6. The hardest part about mornings are: that it takes three hours of pain, mental fog and drunken lack of coordination to be able to function. I used to get up at three in the morning to get to work at seven. The worst mornings were when I was a kid and got screamed at for staggering, falling over, losing my balance and crying. Pain level 9 is when I can't not cry no matter how much I don't want to cry. I still spend most mornings in that state until my pills work an hour after I take them, but I don't make noise while crying. No point to it. There's nothing anyone can do.

7. My favorite medical TV show is: Bones. Yeah. That's the closest thing to a medical TV show that I watch. I don't find medical stuff entertaining. I've been on the wrong end of it too many times to have any interest. I could write a good comedy about "Malpractice" though.

8. A gadget I couldn’t live without is: My laptop. If I could have only one machine it'd be my laptop. That still has 95% of my social support network, it's also the tool for my writing work, the games I play when I'm too sick even to write, the one thing I'm good at.

9. The hardest part about nights are: trying to get to bed if I'm too sick to sleep. It's only hard if I'm trying to sleep enough to function in the morning for something scheduled. Nights are otherwise my best times, especially for creativity and being social.

10. Each day I take 15 pills & vitamins. Including using an inhaler that's hard to remember because it doesn't do anything when I take it. If I remember to use it twice a day, it reduces the asthma in a couple of weeks and keeps it down, it's just hard to remember to use it.

11. Regarding alternative treatments I: would love to try acupuncture but don't know if it's covered by MediCal. Most of them cost money I don't have. I don't believe in homeopathy. I judge each of them on its results. Reiki is wonderful when I can get it because a practitioner is a friend or family member - my son in law does reiki and his treatments helped a lot.

12. If I had to choose between an invisible illness or visible I would choose: something visible as long as I didn't lose any capacity I have now - like seeing, hearing, being able to type. When I get a power chair I think what I've got will be more visible.

13. Regarding working and career: the only job I ever wanted is the only thing I can do without any limits - that would be science fiction writing. I came to love doing art as much but I'm limited to small format art currently. I have no desire to work for other people on a schedule ever again in my life. I wish I'd known sooner so that I never had to do that - I do a lot more on my own time without supervision.

14. People would be surprised to know: how little time I have when I can do anything productive. Most of my time is taken up in being too sick to accomplish anything. They might be jealous of my having in home assistance now, someone coming in to clean up for me. I'd trade that in a heartbeat for being able to do it myself, do it my way and get it done faster.

15. The hardest thing to accept about my new reality has been: living within my limits. Sometimes I can't. My doctor's appointment on Tuesday couldn't be put off even though the elevator was down. I'm still paying for it today.

16. Something I never thought I could do with my illness that I did was: get used to the fact that it's incurable. I'm grateful it's not progressive.

17. The commercials about my illness: always seem unrealistic. Fibromyalgia gets presented as if the pretty lady has nothing else wrong with her and the treatment restores full function as if nothing was wrong. Reality: most people with one invisible illness have a whole collection of them and doctors don't know what half of them are.

18. Something I really miss doing since I was diagnosed is: believing that someday I'd work out and get strong, do adventurous things, be able to take care of myself without help.

19. It was really hard to have to give up: being a street artist. That was the best time in my adult life. I lived on my own and went out when I was up to it. I haven't totally given up. San Francisco has a better Street Artists Program and I'm working on solving the logistics. It was a total kick being able to draw in front of a crowd and sell art right off the easel. Half painting and half performance, that was a thrill until I ran myself into the ground and couldn't do enough days in a month to pay my living expenses. I lived on $4,000 a year but I was happier and had more time off than when I earned $35,000 as a typesetter.

20. A new hobby I have taken up since my diagnosis is: reviewing art supplies on Rob's Art Supply Reviews. It's always been fun to test art supplies and try new mediums and surfaces. Now I can share that experience and help readers decide what supplies are best for what they want.

21. If I could have one day of feeling normal again I would: get out early in the morning and bring my art supplies. I would paint everything cool in San Francisco. I'd ride the bus and go all over the place, even stay out late and paint nocturnes in Chinatown or on the beach. Give me mobility along with the magical cure though. I may yet have that great day of feeling as good as other people and being able to get around like them eventually when I've got powered mobility and if a muscle relaxant improves my fibromyalgia treatment to as good as it was when I still had Bextra. Bextra, an arthritis medicine, got taken off the market for causing heart attacks in 1 out of 10 people taking it.

22. My illness has taught me: to manage stress. If there is one advantage to it, fibromyalgia is instant physical feedback for stress management. A psychiatrist in Minneapolis told me I had "remarkable coping mechanisms." I might write about that someday, it's something I'm expert in.

23. Want to know a secret? One thing people say that gets under my skin is: "You'd feel a lot better if you just get some more exercise and eat right." Yeah. Good advice for a sedentary abled person. Disaster for me every time I've tried it. If they push hard enough that I believe them, I wind up losing weeks or months to recovering from destroying my health on exercises invented for symmetrical people. Exercise does help fibromyalgia. My problem is that I have too much will power and keep doing them past the point of injury with pathetic results that leave other people thinking I'm lazy or unmotivated.

24. But I love it when people: accept me at my word about my limits and symptoms, or when they call me brave. It's not courage dealing with something that's everyday. It's courage when someone first gets a diagnosis and takes it well. But it still feels good if someone says I'm brave for not giving up, for trying to build a good life within my limits.

25. My favorite motto, scripture, quote that gets me through tough times is: If you internalize the viewpoint of your oppressors, you assist in your own oppression. I'm paraphrasing. I think it was James Baldwin but I could be wrong, it was one of the great black liberation philosophers and poets. I am no less a man because my abilities are different from most people's. Neither is anyone else who's different or doesn't have money or has to live with any type of stigma.

26. When someone is diagnosed I’d like to tell them: to accept that it's okay to grieve, don't be ashamed of your feelings. It hurts deep, it's a huge loss to accept disability. Life does get better and grief does end, it helps to feel your feelings and express them, vent to friends and journal, work through it and come out on the other side aware that you still have a lot of potential - perhaps in things you never realized you were talented in.

27. Something that has surprised me about living with an illness is: how ignorant people are about health care in this country. There are people dying for lack of health care. I was almost one of them more than once. There are fewer "Malingerers" than anyone believes - the only people I knew who claimed an illness they didn't have were those struggling with an undocumented real condition who could not survive. Without disability there are easier ways to earn a marginal living. Sell jewelry, play a guitar, sketch on the street. Sell collectibles on eBay. Do copywriting and work online, build ad-supported websites - I'm pursuing a lot of these things even with my disabilities. Nobody chooses Welfare except as a last resort. A con man good enough to get multiple benefits and a decent living by cheating Welfare would get better money cheating individuals with a simpler scam.

28. The nicest thing someone did for me when I wasn’t feeling well was: when my daughter Kitten bought me a new Dell laptop for my birthday when my old one died. Or when she and my son in law cleaned my room so I wasn't living in filth. When they brought good food up to my room when I wasn't strong enough to go downstairs for it. When CeCe helped me move and we spent a weekend together repacking my stuff to get it into the car. When Lucas helped me move across the country. When my online friends ganged up to buy me a good refurbished laptop after my old desktop gave up the ghost and threw me offline. There are too many kindnesses big and small for me to say which one is the nicest.

29. I’m involved with Invisible Illness Week because: I have one, fibromyalgia. I got involved with it a week late because I have fibromyalgia and have no sense of time to speak of. Late as usual. It's still a cool thing. After that week was over I'm still sick, year round, so I might as well do my part for awareness.

30. The fact that you read this list makes me feel: glad that you care, glad that you may be able to understand the next time you meet someone with an invisible illness. Just take them at their word for what they can and can't do. Don't give advice, just listen. If you do give advice, don't be surprised that they've already tried it and either it didn't work or they are already doing that. Give them a ride, help out if they're struggling because their home is too much of a mess - friends will help you move but it's a rare friend who will come out to clean up when your home's unmanageable. Remember that "unmanageable" comes faster and they can't always manage a burst of effort to do a deep clean. When you help with that you give them months of relief in that one weekend. Don't take it personal if they cancel out on something you had planned - they wanted to go, they just can't, same as if you had the flu on the day of the concert. It just happens more often to us and just as unpredictably.
Explore-Oil-Pastels-With-Robert-Sloan.com Articles at eHow.com, ETSY shop, My Bonanzle Booth, deviantART gallery, SFFmuse and look for art by robertsloan2art on eBay. Listed on Art Blogs 4 U
Proud member of the Oil Pastel Society
Interesting art blog: Patrick's Art Blog focused on realism!
New Topical Blog: www.robs-art-supply-reviews.blogspot.com for all the cool art stuff that isn't oil pastels!

Comments

( 8 comments — Leave a comment )
faunhaert
Sep. 24th, 2011 11:38 pm (UTC)
you don't have a degenerating spine on top of this do you?

its horrible visiting the doctor made you sicker
he should have come down to your level!

i still think you've got more balls
moving back to sf is hard to some one with out challenges
and you did it in spite of stuff

your art has gotten better over the years
i look forward to seeing your veiw of san fransisco!

robertsloan2
Sep. 25th, 2011 01:16 am (UTC)
Well, slowly degenerating because I have arthritis in my lower spine. The arthritis is progressive. Doctors don't make house calls, least of all if they'd have to go up three flights of steps to get there.

Purr thank you! I just posted another view of San Francisco, my latest post is another Golden Gate Bridge painting, this time a big one!
elialshadowpine
Sep. 25th, 2011 02:21 am (UTC)
2003 for the fibro, actually. I was there with you at the time. :)

Also, fucking word on so much of this. I might fill it out myself.
robertsloan2
Sep. 25th, 2011 06:15 am (UTC)
Thanks! Figures my memory is that shot. I get a little confused on dates, so I'll go edit it in and fix it. You should copy it and fill it in for yourself, it's a heck of a good meme. I wish I'd seen it last week when it was during the week of the event.

Thank you for being with me at the time. You helped a lot with the shock I had over finding out it wasn't curable.
diana_potts_art
Sep. 25th, 2011 07:47 pm (UTC)
Reiki helps you? I know how to send it long distance. I learned it a long time ago as a system called the Radiance Technique that is the original unwashed out reiki. It is very powerful. I can do it daily for you if you like.
robertsloan2
Sep. 26th, 2011 08:54 am (UTC)
Diana, thank you! That would help so much! I would appreciate it. I have a friend in New Orleans who sometimes gave me treatments remotely and they helped almost as much as if she was there accompanying it with massage. PURR thank you!
caelista
Sep. 27th, 2011 05:22 am (UTC)
This was enlightening. Thanks for offering the insight.
robertsloan2
Sep. 27th, 2011 05:38 am (UTC)
Purr thank you! I found it on ButYouDontLookSick.com and filled it out with my own experiences even though it was a week late for Invisible Diseases Week. I can at least try to help educate people about it - that and validate anyone else who's struggling with chronic illness.
( 8 comments — Leave a comment )

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Robert A. Sloan, author of Raven Dance
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