Sunday, September 12, 2010

30 Things About My Invisible Illness You May Not Know


1. The illness I live with is: Fibromyalgia, Sjogren’s Autoimmune Disease, a few others (boring!)
2. I was diagnosed in: 1999 and 1007, respectively
3. I had symptoms since: 1985
4. The biggest adjustment I’ve had to make is: focusing on basic daily needs at home
5. Most people assume: Being dry is no big deal if you sip water
6. The hardest part of mornings are: Trying to slowly and safely open my eyes
7. My favorite medical TV show is: No TV, movies and old dvd's only
8. A gadget I could not live without: The reassurance of having my epinephrine needle handy though I haven’t used it yet
9. The hardest part about nights are: Having to do a lengthy routine when I'm so tired-I make it worse as I am a night owl
10. Each day I take__ pills: (no comments please) 7 pills, 6 meds for eyes
11. Regarding alternative treatments I have tried: Acupuncture, chiropractic, yoga, relaxation techniques, massage, countless supplements, naturopathic doctor. None really helped and most supplements hurt due to salicylate sensitivity
12. If I had to choose between an invisible illness or visible one I would choose: Very hard. I might choose visible if I could talk and see as freely as before
13. Regarding working and career: I would love to be able to work to help support my family, but my health does not allow. I am thrilled to now be able to take care of the basics at home again and help facilitate my daughter’s learning
14. People would be surprised to know: Some days I cannot drive due to eye pain and I have 50% esophageal functioning
15. The hardest thing to accept about my new reality has been: Constantly disappointing people because I cannot participate in all the activities I once did before
16. Something I never thought I could do with my illness that I did was: Return to school by Distance Learning
17. The commercials about my illness: Fibro-for drugs possibly/ Sjogren’s- none?
18. Something I really miss doing since diagnosed: cross-stitching, being carefree outdoors in the wind and sun
19. It was really hard to give up: most normal foods due to allergic reactions
20. A new hobby I have taken up since I was diagnosed is: carting miniature horses, raising rabbits and writing
21. If I could have one day of feeling normal again: I would hope to be able to attend my children’s graduations/weddings
22. My illness has taught me: To be more patient and tolerate others who I do not understand
23. Want to know a secret? One thing that people say that gets under my skin is: You look great!
24. But I love it when: People do not pressure me socially and recall not to wear fragrance near me, especially in my home where it lingers and I react for days to come
25. My favorite scripture that gets me through hard times is: Psalm 46:1 "God is our refuge and strength, an ever-present help in trouble."....I've found him faithful
26. When someone is diagnosed, I’d like to tell them: It is time for ‘Plan B’ and God is good and will give one. Find an inner circle of trust-worthy friends, look for the Grace and life will go on.
27. Something that has surprised me about living with an illness is: The smallest things mean the most now. Life is still beautiful, the sky is bluer and loving is more passionate
28. The nicest thing someone did for me when I wasn’t feeling well was: believed me
29. I’m involved with Invisible Illness Week because: I want to help raise awareness and support others
30. The fact that you read this list makes me feel: Really grateful that you took the time to read and hopeful you will believe those whose illness is invisible. It saves lives.

5 comments:

Ganeida said...


I don't have an invisible illness [does sin count? ☺] but we live with one here too. It is galling when people say rude things aloud because I am lugging the heavy bags & it is all my hubby can do to manage himself. Pain management is a big deal in this house.

naturalmom said...

Thanks for sharing these.

Stephanie

Nazaré said...

MUITOS NÃO ACREDITAM NA GENTE QUANDO TEMOS ESSA DOENÇA,É TRISTE A DISCRIMINAÇÃO NA PRÓPRIA FAMILIA.

Anonymous said...

Love you! Julie

Jessica said...

I really like this post! It was real! You are in my prayers :)..
I'm guna do something like that..just cuz I liked your idea so much!
I'll be sure to do credits! ;)