Monday, August 16, 2010

Invisible Illness Meme 2010

Invisible Illness week is coming up. This is an invitation to you to join in the fun and awareness of invisible illnesses by participating in a fun meme. I did this last year, now let's see how this year compares:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Lupus, Graves' Disease, Sjogren's Syndrome, Raynaud's, Dystonia, Migraine, Trigeminal Neuralgia, Malabsorption, LPR, etc...
2. I was diagnosed with it in the year: My diagnosis have been ongoing from my late teenage years
3. But I had symptoms since: Childhood
4. The biggest adjustment I’ve had to make is: Changing my expectations of myself
5. Most people assume:...because I've put makeup on and gotten dressed and am smiling, that I am feeling good.
6. The hardest part about mornings are: Waking up each day in pain, yet having to function anyway.
7. My favorite medical TV show is: I'm not sure actually...
8. A gadget I couldn’t live without is: My heating pad.
9. The hardest part about nights are: Not being able to sleep because of the pain, and running hubs off because I turn on the TV for distraction.
10. Each day I take __ pills & vitamins. (No comments, please) I'm down to only about 10 now :)
11. Regarding alternative treatments I: embrace them in an integrative setting
12. If I had to choose between an invisible illness or visible I would choose: Invisible, because I can still pretend to be okay, even when I'm not.
13. Regarding working and career: I do what I can, when I can. My career is over, but I can still help others live better lives by sharing my experiences.
14. People would be surprised to know: that I am happy, even joyful despite the fact I am never without the constant companion of pain.
15. The hardest thing to accept about my new reality has been: The parts of me I have had to leave behind, and the effect it has had on my family.
16. Something I never thought I could do with my illness that I did was: Have joy in my life again.
17. The commercials about my illness: There aren't any.
18. Something I really miss doing since I was diagnosed is: Sitting in the sunshine and riding my beautiful horses.
19. It was really hard to have to give up: my two businesses - our Arabian horse breeding farm, and my stained glass art design, as well as my job as an emergency dispatcher.
20. A new hobby I have taken up since my diagnosis is: Health centered social media!
21. If I could have one day of feeling normal again I would: Spend the day riding my mare in the sunshine, and the evening playing in the pool with my family.
22. My illness has taught me: that I'm stronger than I thought I was.
23. Want to know a secret? One thing people say that gets under my skin is: The stereotypes perpetuated by the media about pain patients, and the effects that has on physicians.
24. But I love it when people: forgive one another's failures and shortcomings
25. My favorite motto, scripture, quote that gets me through tough times is: 2 Corinthians 12;10 I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
26. When someone is diagnosed I’d like to tell them: Concentrate and find joy in the things you CAN do, not those you can't.
27. Something that has surprised me about living with an illness is: How terribly rude and disrespectful some physicians can be to patients, and that they think this is acceptable behavior.
28. The nicest thing someone did for me when I wasn’t feeling well was: Take over doing my chores for me every day.
29. I’m involved with Invisible Illness Week because: those of us with invisible illnesses need to remember that we are not invisible, and we have voices that should be heard.
30. The fact that you read this list makes me feel: Grateful that you cared :)

Comment by amanda on August 16, 2010 at 5:15pm
This is a great post, Ellen. Numbers 12, 13, 22, 25, and 29 were probably the most impactful to me. I hope reading this will help inspire others with invisible illnesses to feel better and even encourage them to write one as well! I know that lots of people are thrilled that #20 is true! :)
Comment by Ellen S on August 16, 2010 at 7:52pm
Thank you so much for your comment Amanda! It was really fun to do this again and compare my answers this year to those from last year.
Comment by Lisa Copen on August 16, 2010 at 9:45pm
Ellen, can I reprint this one over and II week? ? Can you send me a bio and a link to where you'd want me to link to WEGO too and I will be sure to give you a shout out back! thanks tons!!
Comment by Ellen S on August 17, 2010 at 10:00am
You betcha! Will get that over to you later today. Thanks so much :)
Comment by Karen Graffeo on August 23, 2010 at 10:57am
Your 30 things made me happy and sad all at the same time. You show such strength and are a terrific role-model. Thank you for sharing - I'll be posting my 30 soon as well.
Comment by Ellen S on August 23, 2010 at 9:40pm
Karen - be sure to give us a link here so we can visit your list when it's finished! (Hugs)
Comment by JennyPettit on August 23, 2010 at 11:55pm
Ellen - do you want us to post links to our (or ours directly) somewhere specifically on WEGO? I thought I saw something the other day but can't find it now. I have mine done, and on my blog, FB, and linked for Twitter, but want to be sure I get it on here too if there's a specific spot (if not, I'll just post it on my own WEGO blog). Thanks!
Comment by Ellen S on August 24, 2010 at 9:48am
JennyPettit - I just added an event you can find here. Please RSVP then add your link above mine!
Comment by Susan M. on August 26, 2010 at 4:20pm
Thanks for sharing this Ellen. It's amazing how much and how little we can know about people.
Comment by leejcaroll on September 3, 2010 at 9:24pm
As a women in pain awareness advocate number 5 is ithe one that can ironically cause us the most grief.
." Most people assume:...because I've put makeup on and gotten dressed and am smiling, that I am feeling good."
Next week, when I give a workshop at a small women's retreat, because I did WIPA last year I will be talking about invisible illnesses instead. I was not aware there was Invisible Illness Week Thanks for letting us know.
You are quote a lady. I knew that already but now I know it multiplied by 100.
Comment by Ellen S on September 4, 2010 at 4:58pm
((Hugs)) leejcaroll - the feeling is mutual :) Good luck with your workshop! I hope you'll let us know how it goes... You are fabulous girl!
Comment by leejcaroll on September 4, 2010 at 5:12pm
Oh foo. (I don;t know an emoticon for blush.) ((*_*_))
Thanks unfortunately, and think large part was the date, neither librarian or I realized was holiday weekend. only 2 folks came but it turned into a good support time, I thinnk. I have started a support group thru and that will start next month so hopefully that will be better. bummed that 2 of the 3 from that said they would be there today and didnt make it, hoping that wont be case for the group meeting.
Hope you have a good and safe weekend. ((*_*))
Comment by Ellen S on September 4, 2010 at 5:18pm
Hang in there! The weekend probably got the best of them. Starting a group is always a time intensive proposition. Give it a little time and see what happens... :)
Comment by leejcaroll on September 4, 2010 at 9:37pm
Thanks. I would like to see the support group work out, hoping the first real meeting next month will work.

No comments: