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Friday, August 30, 2013

My Invisible Illness


30 Things About My Invisible Illness You May Not Know

1. The illness(es)  I live with is (are): Psoriatic Arthritis, Psoriasis, Asthma, Schizoaffective disorder, Sjogrens
2. I was diagnosed with it in the year: PsA 2005, Asthma,:2000, :SZA 1982, Sjogrens:2013
3. But I had symptoms since: PsA: 2003, Asthma: 2000, SZA 1980
4. The biggest adjustment I’ve had to make is: Staying at home after I could no longer drive
5. Most people assume:  I'm a hypochondriac and that every week it's something new.  Fact is: all the problems spring from these three things
6. The hardest part about mornings are: severe pain and stiffness.  I'm blessed that I do not work and most mornings am not rushed so I can ease into the day slowly.
7. My favorite medical TV show is: I never watch TV
8. A gadget I couldn’t live without is: a great Jar opener I have--it will open anything
9. The hardest part about nights are:  Waking in pain and stiffness.  I have to get up and walk around a while several times each night.
10. Each day I take __ pills & vitamins. (No comments, please)  Not sure.  At LEAST 24 pills
11. Regarding alternative treatments I: I eat a vegan diet....try to be as healthy as possible in what I eat.
12. If I had to choose between an invisible illness or visible I would choose:  They both suck
13. Regarding working and career:  I miss my job.  It was hard to admit I will never be able to work again.
14. People would be surprised to know:  How severe my pain is.
15. The hardest thing to accept about my new reality has been: the isolation.  Every one is busy; too busy to visit or call me.
16. Something I never thought I could do with my illness that I did was: learning to give myself injections.
17. The commercials about my illness: are laughable.  The golfer who has PsA only has it in one hand a little people assume since he's still golfing , that the illness is no big thing.
18. Something I really miss doing since I was diagnosed is: Driving.  And doing my art work
19. It was really hard to have to give up: Driving.
20. A new hobby I have taken up since my diagnosis is: restarted knitting.  But am finding it hard
21. If I could have one day of feeling normal again I would: go running. or better yet: roller blading
22. My illness has taught me: to be more patient with myself and with others
23. Want to know a secret? One thing people say that gets under my skin is: "Oh, you look so good! You must be feeling better!
24. But I love it when people: Understand that hugging and shaking hands is painful, so they back off.
25. My favorite motto, scripture, quote that gets me through tough times is:  "There is no God like the God of Jeshurun who rides the winds to help you, majestic through the skies. " Deut 33: 26
26. When someone is diagnosed I’d like to tell them: Learn as much as you can and get aggressive help immediately.  That is when the meds work the best, as soon as you are diagnosed.
27. Something that has surprised me about living with an illness is:  That it never goes away.  There are no "good days"
28. The nicest thing someone did for me when I wasn’t feeling well was: Called me and said she was going out to the stores, did I want to come with her?  It was a wonderful day.
29. I’m involved with Invisible Illness Week because:  I'm tired of being invisible.
30. The fact that you read this list makes me feel: hopeful. 
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