30 Things About My Invisible Illness You May Not Know

http://invisibleillnessweek.com/?p=2301

1. The illness I live with is: diabetic peripheral neuropathy; fibromyalgia, and degenerative disc disease


2. I was diagnosed with it in the year: oy well the neuropathy and DDD 2008, and the fibromyalgia 1999


3. But I had symptoms since: the neuropathy I think 2007, but the fibromyalgia I've had since childhood. I had these sharp pains that the doctors said were growing pains. Problem is I never grew out of them.


4. The biggest adjustment I’ve had to make is: going from being one of the most active independent people I've ever known to being dependent on others even to take me grocery shopping and being totally inactive, stuck at home. The descrition I added to my blog says:
A year and a half ago I was a rising star with Disney. A top salesperson, heavily involved in the environment at Disney, winner of the prestigious Environmental Excellence award, working on my masters degree when my hands became riddled with inflammation, aching, stabbing, burning, and electric shock like pain. Today, I am unable to work, unable to drive, home 95% of the time. I want to educate other diabetics so this doesn't happen to them.


5. Most people assume: I'm just lazy.


6. The hardest part about mornings are: the stiffness and pain, plus sometimes, being awake all night


7. My favorite medical TV show is: Hawthorne, LOL


8. A gadget I couldn’t live without is: The beverage buddy. It helps me open soda bottles, and cans tii


9. The hardest part about nights are: The pain and not being able to sleep


10. Each day I take __ pills & vitamins. (No comments, please) 20


11. Regarding alternative treatments I: have heard or tried them all, I appreciate your thought, but trust me I've heard it or tried it before.


12. If I had to choose between an invisible illness or visible I would choose: this is a tough call, I mean what exactly is a "visible" illness. unless it has scabs or rashes. I mean even cancer can be considered invisible. On the other hand, if by visible you mean something that is more widely known and accepted, sure that would be easier but no I wouldn't trade the invisible illnesses I have for a visible one I don't know about. Stay with the evil you know.


13. Regarding working and career: mentioned above, but damn do I miss it. I mean why do people think I would really choose to stay laying on the couch at home all day over a job I loved?


14. People would be surprised to know: That not working isn't all it's cracked up to be.


15. The hardest thing to accept about my new reality has been: Giving up my independence and dealing with the constant pain and exhaustion.


16. Something I never thought I could do with my illness that I did was: Help other people.


17. The commercials about my illness:  Well, the Lyrica commercials crack me up. It's good that they are out there which brings awareness. But the reality is Lyrica only worked in 28% of people. And the side effects. I gained 50 lbs and had a rash on my legs they wouldn't admit to being from the Lyrica. I was in the study for it. If they admit the rash was from the Lyrica they would have to put it down as a side effect.


18. Something I really miss doing since I was diagnosed is: driving, working, socializing with my friends, picking up my niece and nephew from school and hanging out with them.


19. It was really hard to have to give up: my job.


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: pick up my niece and nephew and spend the day with them like I used to. Go to the pier, or the aquarium, get pizza.


22. My illness has taught me:  I'm not as tough as I thought I was.


23. Want to know a secret? One thing people say that gets under my skin is: if you just excercise or lose some weight you will feel better.


24. But I love it when people: Ask what they can do to help, even just vacuuming or unloading the dishwasher.


25. My favorite motto, scripture, quote that gets me through tough times is: Just do it! LOL


26. When someone is diagnosed I’d like to tell them: First, there are people who have the same illness and will be there to help you through this, including me. And, talking to people with the same illness does help. Second, I am here and willing to answer any of your questions. With the diabetes I would like to educate them so they know how dangerous diabetes is and the consequences.


27. Something that has surprised me about living with an illness is: how my husband has taken on the role of caretaker.


28. The nicest thing someone did for me when I wasn’t feeling well was: pick up my prescriptions, bring me noodle soup, took my doggie out for a  walk.


29. I’m involved with Invisible Illness Week because: it shouldn't be invisible. Invisible illnesses are as real and as serious as the more known, more visible illnesses.


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