30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia and Osteogenesis Imperfecta

2. I was diagnosed with it in the year: Fibro: 2005 OI: 1997

3. But I had symptoms since: Feels like forever

4. The biggest adjustment I’ve had to make is: Planning ahead and stopping when my body tells me to

5. Most people assume: I live with a "normal" amount of pain and that I should just deal with it

6. The hardest part about mornings are: Everything-- I hate mornings, my body is ridiculously stiff

7. My favorite medical TV show is: House!!

8. A gadget I couldn’t live without is: My cell...I don't really use gadgets to help my Fibro

9. The hardest part about nights are: Getting to sleep, sometimes the pain is too bad to let me sleep

10. Each day I take __ pills & vitamins. (No comments, please) 8

11. Regarding alternative treatments I: am open to them and welcome any suggestions

12. If I had to choose between an invisible illness or visible I would choose: Is neither an option? lol I suppose invisible, that way I can appear to be just like everyone else

13. Regarding working and career: I'm scared of what limitations my illness is going to create for me and that I'm afraid that people will not respect me as much as my peers

14. People would be surprised to know: That I really struggle with the emotional and mental aspects of being in pain all the time

15. The hardest thing to accept about my new reality has been: That I can't do everything I've want or have wanted to.

16. Something I never thought I could do with my illness that I did was: ?

17. The commercials about my illness: provide a totally unrealistic picture of what Fibro is like

18. Something I really miss doing since I was diagnosed is: Being relatively carefree

19. It was really hard to have to give up: Doing all sorts of fun activities with my friends

20. A new hobby I have taken up since my diagnosis is: Blogging

21. If I could have one day of feeling normal again I would: Play sports and run and laugh and have great sex lol

22. My illness has taught me: To be patient

23. Want to know a secret? One thing people say that gets under my skin is: everything (regarding my illnesses)...stop giving me advice if you have no idea what I'm going through

24. But I love it when people: Understand me and offer to help me with something, or completely understand that my pain limits the things I can do

25. My favorite motto, scripture, quote that gets me through tough times is: way too many to list

26. When someone is diagnosed I’d like to tell them: it's time to get organized and don't settle for something--fight for what you believe is right

27. Something that has surprised me about living with an illness is: How much wiser and well-versed I am because of the situations I've been through

28. The nicest thing someone did for me when I wasn’t feeling well was: simply hold me and tell me that they understand and that they will help me get better

29. I’m involved with Invisible Illness Week because: We need to become visible!

30. The fact that you read this list makes me feel: Honored

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

So Let Us Introduce Ourselves…

Well I’m a 21 year old senior in college from Northern New Jersey. At 10 months of age, I had tripped over some toys on a carpeted floor and buckle fractured my left arm. Everyone thought it was a little odd, but eventually got over. Fast-forward to age 8 and my fourth broken bone and my Mom started to get a little suspicious. So off we went to see a geneticist. After a full and tedious examination, I was diagnosed with Osteogenesis Imperfecta. OI is a genetic bone disorder which is often adorably titled the “Brittle Bone Disease.” Basically, your body’s production of collagen isn’t exactly up-to-par and because of that, your bones are not nearly as strong as they should be. In addition to this, muscle weakness, fatigue, joint laxity, scoliosis, and many other things are typically present as well. At the time of my diagnosis, this disorder was not very well known and the only advice the doctor gave was to be careful and limit my physical activity.

So we left it at that. I limited my activity and surprise, surprise, still managed to break bones. Around 14 or 15, my pain had jumped off the charts and we found a “team” of doctors in a hospital in New York City. I found a new geneticist, rheumatologist, and orthopedist. My diagnosis of OI was confirmed as a mild case and I was also diagnosed with Juvenile Rheumatoid Arthritis. They assumed the pain I was in was caused by the JRA. So I went on anti-inflammatory medication and aqua-therapy. Problem was the pain wasn’t going away. The pain in my lower back and right hip was so excruciating that I missed almost a month of school in just one marking period. So we trekked on and found more doctors.

My battle with this unknown source of pain would continue for 2-3 years with new doctors, treatments, medications, physical therapy, and tons and tons of testing. I finally found a new rheumatologist who dismissed my diagnosis of JRA and gave me a new, even more illusive diagnosis: Fibromyalgia. After years of what felt like being tossed around from doctor to doctor, test to test, and medication to medication I was skeptical and ignored my diagnosis, just waiting to see what the next doctor could concoct. Now, 4 years later, after a confirmation of my FM diagnosis, I am accepting my diagnosis of FM and learning to live as a Fibromite.

What about you, what's your story?