Between Sep 14th and 18th is the "Invisible Illnesses week". It is important to spread out everything bout the mysteries of illnesses you cannot see and you probably never heard of. I am suffering a lot from these illnesses ... actually "more then less" cuz the last days with my friends have been very hard. Please spread the word bout this week out and comment if you still have any questions about!
Learn about 30 facts of my invisible illnesses right here.
1. The illnesses I live with are: A: Juvenile rheumatic arthritis, B: osteopenia, C: arthrosis & D: the Gregg Syndrome E: cardiac neurological synkope
2. I was diagnosed with it in the year: A: 1987 B: 1999 C: 2001 D: 2008 E: 2002 (yep, concerning D & E - doctors are pretty fast in finding diagnoses!)
3. But I have had symptoms since: A: 1985 B: 2000 C: 2000 D & E: my birthday 1979
4. The biggest adjustment I’ve had to make is: Don't try to trust in the pharma mafia except you really want to work like the doctors tell you. They promised me to sit in the weelchair by the age of 30. I changed my complete eating habits. I do as often and as strict as possible aryurvedic diet. I see and feel all kinds of body movings by feet, bicycle and nordish ski or by very small swimming as sports (besides that I do since 8 years regularly yoga TM and capoeira. that is sport) and I deny lifts/elevators and use stairs. Walking in daily base is SPORT!
5. Most people assume: Rheumatism, Arthrosis and Osteopenia/Osteoporosis is for old people & People with Gregg Syndrome are highly mentally impaired people. I am not fucking old nor stupid! Concerning E: That whenever I am talking bout "Well, I think I will get k.o. within the next few minutes. Please don't call emergency. just let me lie down now, put my feet on a chair and watch out that I still have some pulse and provide some water. My brain is just doing a small >> back up and new start ." They never never listen to me but calling emergency AND the doctors at emergency room never heard of cardiac neurological syncope before but testing me at least for one or two days whether I am having epileptical stuff or a serious heart disease.
6. The hardest part about mornings is: The struggle with "How do I get out of the bed without hurting myself. (I usually do cuz whenever I lie more than one hour my complete balance system (Gregg Syndrome) is out of order AND my body parts are not fluently working (Arthrosis, Osteopenia, Rheumatism).
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My piano ... finger training for desperate wanna be pianists
9. The hardest part about nights is: falling asleep with hardcore pains I collect from a very busy day.
10. Each day I take 4 different aryurvedic pills (Calcium for the bones, Magnesia for the muscles, one for being better eupeptic and another for blood production) and I take since 3 months antibiotica against some stomach bacteria that produces muscles and bone problems. Thanx to that awesome last and actual doc i have .... he didn't took me with the diagnosises I had he started from the "beginning" and found out about these bacteria.
11. Regarding alternative treatments I have tried different sports (brings me everything else then help for my bones and muscles cuz sports produces always stress for me!) AND I tried to eat plain vegetarian ... didn't work out - the pain grew. Besides that, the actual medication and support I get is completely alternative AND a "usual common" doctor just helped me to get there (and my stubborness!)
12. If I had to choose between an invisible illness or visible I would choose: I don't know (besides the thing that a hard version of Gregg Syndrome is very much possibe to be seen)
13. Regarding working and career: As much as I work, I forget my daily and stable pains I always have AND as much as I talk about them I realise them. Working makes me feel healthy.
14. People would be surprised to know: I am having always my emergency pass with me ... selfwritten with ALL single explainations about all invisible illnesses and how to handle with them without supporting the pharma mafia.
15. The hardest thing to accept about my new reality has been: 1st: Doctors still believe they know me better after reading five pages of my illness oddyseys and I have to confess THEY DO NOT! 2nd: You will only get a date at your resident Doctor for rheumatology at July or August (usually then when you will have the most less pains and you usually listen to those phrases like: "You are not ill enough for this or that. Next date July next year."
16. Something I never thought I could do with my illness that I did was: Being more or less "clean" of items by the Pharma mafia. (I took Vioxx 6 years, Prednisolon 15 years, Chlorochin 15 years, Indomedacin 10 years and a couple of other stuff that is not sold anymore cuz too many people died of it ... usually medication is not tested for the use of children)
17. The commercials about my illness: are telling you that rheumatism and arthrosis are things for people over the age of at least 50. The Gregg Syndrome is only existing as a reason for abortion AND at least cardiac neurological syndrome is not existing. It is a "not" existing illness and honestly there are just about 1000 diagnosed people in whole Germany with it and it is not too spectacular to talk about it.
18. Something I really miss doing since I was diagnosed is: living without any pain. I lived without more or less until the age of 6.
19. It was really hard to have to give up: Being part of a healthy group of people in school. I never had friends in school cuz I was never playing with them. I was too less at school. I never did sport. I ruined the class results at school contests et c. (Yes, in GDR times, I was not allowed to take part at the school sport lessons BUT I had to take part each fucking year at so called "Peace walks - 10 km jogging in honour of Ernst Thälmann or the dead people in Hiroshima and Nagasaki". ... I hated that and I couldn't get rid of it and it brought me more and more hatery by the school class.
20. A new hobby I have taken up since my diagnosis is: playing piano.
21. If I could have one day of feeling normal again I would: say ... "Fuck off! My invisible illnesses are really aweful in a lot of ways but even when I won't have them, they wouldn't make me normal. Being normal is being boring."
22. My illness has taught me: I wouldn't be that strong right now without them and I just would minimize my strange being as a problem of heritage and would minimize everything to racism.
23. Want to know a secret? My weight of the age of ten was 20,5 kg. It was by the end of 14 weeks at one clinic. I got to the clinic cuz I had hard problems with my feet and my muscles. By the end of these 14 weeks I had a damaged stomach, my complete skin got pealed, I had serious kidney problems and the doctors suggested my to abiate my right feet. By the way, I only could eat babyfood (you know that mashed stuff in small glasses for baby that start to eat anything else than Mommys milk.)
24. But I love it when people: realise that I still got that humour and take each day in life as challenge.
25. My favorite motto, scripture, quote that gets me through tough times is: "The Life is an asshole and I am its CEO."
26. When someone is diagnosed I’d like to tell them: Sport are all your concious movements you do each day. Promised.
27. Something that has surprised me about living with an illness is: People are always feeling sorry for it but I don't need this. It would help me more if someone would just give me a seat in a full train and believe that I got those horrible pains. (I usually don't ask for a free seat. When I do, then I really have pain!)
28. The nicest thing someone did for me when I wasn’t feeling well was: Subway to Sally provided me a seat at one of their legendary Dec 30th in Potsdam at the Lindenpark shows. (A completely sold out concert 1200 people at one small club ... anyone was standing except of me. I was sitting next to the soundmixstage). The sound was awesome, I could have seen the band, I didn't had so much pain and their was no sign of cardiac neurological syncope).
29. I’m involved with Invisible Illness Week because: You never know enough about your neighbours and I promise you, a lot of strange situations are caused of invisible illnesses. I know that I get completely grumpy and not amused when the pain is overfloating me.
30. The fact that you read this list makes me feel: Thankful. Cuz first of all, I hope you don't feel anymore sorry for me. I live with it ... since more or less 30 years and I am aware of a lot of strategies to make my life fucking unbelievable beautiful. (P.S.: Having no job and being not needed is more painful than having all of those invisible illnesses)
EDITH to Point: 10 ... my actual doc is not sure whether I have rheumatism ... he believes that it just was the overproduction of those stomach bacterias and they produce inflammations in muscles, at joints. Since the therapy I have less pains.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com