30 THINGS YOU MAY NOT KNOW ABOUT MY INVISIBLE ILLNESS!

In honor of National Invisible Chronic Illness Awareness Week (September 9-15, 2013), they asked those of us suffering with chronic, invisible illness to answer the question: "30 Things You May Not Know About My Invisible Illness".  Here are mine!

1. The illness(es) I live with are: Interstitial Cystitis (IC)/Painful Bladder Syndrome; Pelvic Floor Dysfunction; Vulvodynia with Vulvar/Vaginal Atrophy; Epilepsy; Cardiac Arrhythmia; Degenerative disc disease, spondylosis & arthritis in lower back and neck
2. I was diagnosed with it (IC) in the year: 2002
3. But I had symptoms since: 2001
4. The biggest adjustment I’ve had to make is: Having to stop working; socializing, traveling, exercising, selling my home and moving in with my parents. These are ALL the most difficult adjustments I’ve had to deal with.
5. 5. Most people assume: I look fine, so I must be fine!
6. The hardest part about mornings are: Just getting out of bed.
7. My favorite medical TV show is: Don’t really have one. I do like Dr. Nancy Snyderman on NBC News but I feel all the medical TV shows are too superficial in their coverage of ALL medical issues, let alone invisible, little known diseases such as those from which I suffer. 
8. A gadget I couldn’t live without is: All my electronics (laptop, tablet and phone); it’s my way of communicating with the “outside” world, my friends and family as well as raising awareness and communicating with others suffering from the same medical conditions I do. If the electricity goes out, the internet goes down or any of my devices malfunction, I am not a happy camper!
9. The hardest part about nights are: Not sleeping! 
10. Each day I take: 9 pills (really it’s 9 prescriptions = more than 9 actual pills) & other therapies you don’t want to know about. (No comments, please)
11. Regarding alternative treatments I: have tried countless complementary and alternative therapies with little to no success. I am extremely knowledgeable about my illness(es) and the treatments (both traditional and alternative) for them. As well meaning as you may be, it makes me very uncomfortable and puts me in an awkward position when people who know very little about my medical conditions want to offer advice on what treatments I should try. If you’ve read about it, trust me, I have too and already tried it!
12. If I had to choose between an invisible illness or visible I would choose: Well, honestly, neither. I would rather be healthy. Living with invisible disease(s), however, makes it more challenging to have people believe you. The comments, stares because I park in a handicapped parking space (yes I have a permit), getting approval for disability benefits and more - all are very painful and difficult to live with but having people not believe you because they can’t SEE it is very painful. 
13. Regarding working and career: I miss it. I never would have believed that it would be so difficult to stop working and go on disability, but it was extremely emotional and difficult. Disability is NOT retirement and it’s NOT fun or vacation! It’s also boring and lonely, though I am lucky to have a very supportive family and very small group of close friends who work around my special needs and find ways to visit and allow me to stay connected. 
14. People would be surprised to know: That friends actually disappear from your life when you get sick.
15. The hardest thing to accept about my new reality has been: That it wasn’t going away. There is no cure and treatments are inadequate. Learning how to live with chronic pain & illness and giving up my “old” life - accepting that - is very hard. 11 years later I am still talking about it in therapy.
16. Something I never thought I could do with my illness that I did was:  Become an active volunteer patient advocate talking to others suffering from my illness offering support, answering questions, pointing them toward resources; become a fundraiser, raising over $3,000 for Interstitial Cystitis research; start a Blog and use Twitter to work every single day to raise awareness for my medical condition(s) - all from my comfy chair in my office!
17. The commercials about my illness:  Don’t exist! 
18. Something I really miss doing since I was diagnosed is: Skiing, going for a walk, going on vacation/traveling; taking my niece to the theater and being able to just do whatever I want whenever I want.
19. It was really hard to have to give up: See #18
20. A new hobby I have taken up since my diagnosis is: No hobbies; but again becoming a Patient Advocate and Volunteer since being diagnosed is what has given me motivation to keep going and find something positive to do even while struggling to manage my own health.
21. If I could have one day of feeling normal again I would: Not be able to pick one thing-go skiing; take my niece to the theater again; resume exercising - where to start??!!
22. My illness has taught me: To be grateful for what I DO have. I could focus on being miserable, never get out of bed but that doesn’t actually help. I can’t do anything about getting sick, but I can choose how to LIVE with it!
23. Want to know a secret? One thing people say that gets under my skin is: Offering unsolicited medical advice. Ask me all the questions you want and I’m happy to tell you. But as I mentioned above, I am not looking for medical advice.
24. But I love it when people: Call me! Visiting is even better. Just stay in touch!
25. My favorite motto, scripture, quote that gets me through tough times is: I like a lot of inspirational quotes & positive affirmations. I use them frequently and find focusing on positive thoughts helps me cope. If I had to pick one, I think it would be: “Today we fight. Tomorrow we fight. The day after, we fight. And if this disease plans on whipping us, it better bring a lunch, 'cause it's gonna have a long day doing it.” 
26. When someone is diagnosed I’d like to tell them: I am here for you; you are not alone and you CAN do this!
27. Something that has surprised me about living with an illness is: I found I was stronger than I thought I ever could be.
28. The nicest thing someone did for me when I wasn’t feeling well was: Drive 2 hours to just spend time with me. Call me and spend time talking with me (NOT about my illness); making me laugh (even though it hurts) - all these are food for the soul and make living with chronic pain/illness just a little bit better.
29. I’m involved with Invisible Illness Week because: I think it’s important to help raise awareness and educate others about what those of us living with invisible illness(es) are really going through each and every day.
30. The fact that you read this list makes me feel: Great! If you read this then I thank you for taking the time to educate yourself & learn what one person living with invisible illness is going through.