September 8th, 2009
1. The illness I live with is: Lupus, Chronic Fatigue and Fibromyalgia
2. I was diagnosed with it in the year: 2001 (not totally sure.)
3. But I had symptoms since: I was a child
4. The biggest adjustment I’ve had to make is: having to stop working and the constant fatigue
5. Most people assume: I’m not telling the truth
6. The hardest part about mornings is: being so stiff and sore.
7. My favorite medical TV show is: ER and Strong Medicine (hard to choose just one.)
8. A gadget I couldn’t live without is: my rice heating pad.
9. The hardest part about nights is: tossing and turning in pain and the silence.
10. Each day I take 12 or more pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried many things, but wish something would help.
12. If I had to choose between an invisible illness or visible I would choose: visible (but, it depends)
13. Regarding working and career: I miss it a lot and wish I could have it back.
14. People would be surprised to know: I’m not as strong as people think.
15. The hardest thing to accept about my new reality has been: not being the kind of Mom I dreamed of being.
16. Something I never thought I could do with my illness that I did was: don’t know
17. The commercials about my illness: make me cringe, Lyrica over and over….. Like I need reminder of the pain.
18. Something I really miss doing since I was diagnosed is: being able to run errands without loss of energy.
19. It was really hard to have to give up: my memory not being what it used to be.
20. A new hobby I have taken up since my diagnosis is: writing
21. If I could have one day of feeling normal again I would: visit an amusement park.
22. My illness has taught me: to slow down.
23. Want to know a secret? One thing people say that gets under my skin is: people not acknowledging my sickness and being treated like I’m broken.
24. But I love it when people: listen and try to understand what I’m going through.
25. My favorite motto, scripture, quote that gets me through tough times is: the serenity prayer.
26. When someone is diagnosed I’d like to tell them: find out as much as you can about the illness and don’t take doctors word as gospel truth.
27. Something that has surprised me about living with an illness is: how frustrating it really is to be in pain day and night.
28. The nicest thing someone did for me when I wasn’t feeling well was: helping me on bad days.
29. I’m involved with Invisible Illness Week because: I want to speak awareness of chronic illnesses
30. The fact that you read this list makes me feel: good and glad I could share my story.
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
Filed under Life with Lupus | Comments (9)
I’m Happy for you, because despite of your illness, you don’t give up, you do something to help others and inform others about this illness. Maybe God has plans for you, just wait for it…
Wow – Are you living in MY body?? I was thrilled to read everything you wrote. I’m sorry you’re in so much pain…I hate that and wish I could take it all away. However, it was like reading my own post. It’s so incredible to know someone else feels exactly like you do. I don’t have lupus (at least not this week…depends on what my tests say from week to week) but I do have Cushing’s Disease, failed back syndrome (due to failed surgeries resulting from an at work injury), HS, chronic pain syndrome, depression…shall I go on? lol
Please hang in there – and keep blogging. It helps others when you share your story – whether you’re feeling good or bad. It helps to know someone else is in the boat – and I like knowing there is someone to send me a life jacket when I feel like my side of the boat is taking on too much water – OR – knowing I can send a life jacket to someone else when their side of the boat is water logged.
xx
You are strong and you have to be strong to cope with it.
Your spirit of strength encourages others as well.
Best Wishes to you from a Chinese Blogger.
be strong..God Bless you!
Santhy,
Thank You and you too..
CC
Vanessa,
Thanks so much. I try to stay strong.
CC
Queen Katherine,
I’ve said the same thing about someone else living in my body. LOL All these chronic illnesses need to take the high road.
CC
I got diagnosed with CFS in 1990 in 1995 I was diagnosed with Fibromyalgia. My daughter is 16 and I think she has fibromyalgia. I know the pain and the confusion you must feel. I have been denied disability so many times I gave up. Keep going be blessed Kinky.
Kinky,
Thanks for the comment, I can understand all too well what its like to live with pain and FM, it stinks. Don’t give up.
CC