Thursday, September 15, 2011

30 things you may not know about my invisible illnesses -

1. The illness I live with is: Lupus (SLE) & Fibromyalgia - these things come with many *piggyback* issues as well, like Raynauds, pulmonary hypertension, chronic (fibrotic) lupus pneumonitis,  “shrinking lung” syndrome - all of which I also deal with.
2. I was diagnosed with it in the year: 1999
3. But I had symptoms since: 1998 
4. The biggest adjustment I’ve had to make is:not being able to do things with my family - I sit and wait A LOT!
5. Most people assume: I'm lazy,because I am overweight
6. The hardest part about mornings are: getting going 
7. My favorite medical TV show is: don't really have one
8. A gadget I couldn’t live without is: my phone - it is my brain - has everything in it
9. The hardest part about nights are: getting comfortable without hurting and falling asleep
10. Each day I take _3 different_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: am scared to go off of my prescriptions to give anything else a try
12. If I had to choose between an invisible illness or visible I would choose: the invisible
13. Regarding working and career:I don't have one - I can't work
14. People would be surprised to know:That I hurt more than I let on.
15. The hardest thing to accept about my new reality has been: well, it's not new to me, but the loss of energy and feeling tired all the time was a hard adjustment
16. Something I never thought I could do with my illness that I did was: have children
17. The commercials about my illness: make me stop and listen - and hope that others are stopping and listening also
18. Something I really miss doing since I was diagnosed is: working... I enjoy being with young kiddos - physically, it's too much for me, but also their simple cooties can really get me down!
19. It was really hard to have to give up: the ability to just go for a walk or bike ride
20. A new hobby I have taken up since my diagnosis is:blogging!  Once my kiddos are grown and gone, I would like to put together Unit Studies for preK age
21. If I could have one day of feeling normal again I would: deep clean my house from top to bottom
22. My illness has taught me: live life day by day - you never know what tomorrow will bring
23. Want to know a secret? One thing people say that gets under my skin is: you look like you feel good!
24. But I love it when people:ask if there anything they can do or offer to help somehow
25. My favorite motto, scripture, quote that gets me through tough times is: I can do ALL things thru Christ who gives me strength - I don't have to be Strong Enough!
26. When someone is diagnosed I’d like to tell them: it's not the end of the world
27. Something that has surprised me about living with an illness is: If I can't do something I feel I should (clean house) it's not the end of the world - things will get done...
28. The nicest thing someone did for me when I wasn’t feeling well was: let me sleep!
29. I’m involved with Invisible Illness Week because: Not only are the illnesses invisible, but they are not high on the awareness list!  People need to be made aware of these illnesses!
30. The fact that you read this list makes me feel: like you know a little bit more about an invisible

1 comment:

  1. I feel for you. I have SLE and fibro, too. I was even diagnosed at the same time.


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