Wednesday, September 14, 2011

Invisible Illness Week


1. The illness I live with is:  Sjogren’s Syndrome and I also have: Hypothyroidism, Diabetes, Gastroparesis, High Blood pressure, Irritable Bowel Syndrome, Fibromyalgia and Polycystic Ovarian Syndrome
2. I was diagnosed with it in the year:  2006
3. But I had symptoms since:  I was a teenager
4. The biggest adjustment I’ve had to make is:  all the medications I have to take and the exhaustion.

5. Most people assume:  That because I don’t look ill, or I’m smiling, that I’m not sick.
6. The hardest part about mornings are:   waking up and standing up from the bed (feet hurt, knees hurt, hips hurt).
7. My favorite medical TV show is:   Mystery Diagnosis!
8. A gadget I couldn’t live without is:   My soap/shampoo dispenser.  It attaches to the wall and I keep it filled up.  Showering is a big ordeal and so was opening the shampoo bottles.

9. The hardest part about nights are:   The inability to sleep well due to joint pain and other issues.
10. Each day I take __ pills & vitamins. (No comments, please) 17
11. Regarding alternative treatments I:  wish that I could afford to try some alternative treatments, such as acupuncture.                                                                                     

12. If I had to choose between an invisible illness or visible I would choose:  NEITHER!
13. Regarding working and career:   I am still working full-time … barely.
14. People would be surprised to know:  How much pain I have sitting at my desk and how much sleep I need.
15. The hardest thing to accept about my new reality has been:  Not being able to physically do as much as I used to do (ie. Cleaning, socializing).  Coming to terms with the fact that the day is coming when I will not be able to work full-time any longer.
16. Something I never thought I could do with my illness that I did was:  remain fat fluffy (gastroparesis).

17. The commercials about my illness:   don’t exist.
18. Something I really miss doing since I was diagnosed is:   crafts, gardening, hanging out with friends.  I’m just too tired when I get home from work and the weekend is for minimal chores and resting.

19. It was really hard to have to give up:   The ability to take care of everything by myself because I had the energy to do so.
20. A new hobby I have taken up since my diagnosis is:  LOL, none.  I’ve had to give up most of my hobbies and activities.
21. If I could have one day of feeling normal again I would:  I would start off the morning outside.  Perhaps checking on my flowers.  Then I would go someplace with some friends for lunch and perhaps to a book store.  I would like to invite friends over that evening for a BBQ, good conversation and lots of fun.
22. My illness has taught me:   patience and that the important things in life are basic and do not include a spotless, pristine home.
23. Want to know a secret? One thing people say that gets under my skin is:  How come you go to the doctor so much?  Oh that’s not so bad.  Have you tried (blank)? 

24. I love it when people:   Keep me in their prayers.  Also when they really care about what is going on with me medically
25. My favorite motto, scripture, quote that gets me through tough times is:   “Be strong and courageous, do not be discouraged, for the Lord will be with you wherever you go.” Josh 9:1     

“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.” ~ Maya Angelou      
26. When someone is diagnosed I’d like to tell them:   You are not alone.
27. Something that has surprised me about living with an illness is:   How much I cannot do anymore, how little people understand and the fact that they do not want to.                                                  

28. The nicest thing someone did for me when I wasn’t feeling well was:   Clean my house, tell me it was ok and gave me a hug.
29. I’m involved with Invisible Illness Week because:   I have Sjogren’s Syndrome.
30. The fact that you read this list makes me feel:   That I am not alone and that someone out there understands me.


Anonymous said...

some of the things you said made me cry

phsymom said...

My apologies, that was not my intent. I participated to bring more awareness to all the invisible illnesses out there and those of us who live with them.

Thank you for visiting my blog.