30 Things About My Invisible Illness You May Not Know

Invisibleillnessweek.com put out a blank list entitled “30 Things About My Invisible Illness You May Not Know”  Here are my answers in honor of  “Invisible Illness Week,” which is September 14th through September 20th, 2009:

1. The illness I live with: Lyme Disease, Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: way before 2008 — lots of wasted time and permanent damage done.
4. The biggest adjustment I’ve had to make is: not being able to lift my child or ride my horse.  Both “adjustments” break my heart. I also hate not being able to make solid plans because I never know how I am going to feel.
5. Most people assume: that lyme can’t make someone this sick, and that they will never get a debilitating disease.  Oh yeah, and that lyme is “easy to treat”.
6. The hardest part about mornings are: waking up and realizing it isn’t just a bad dream that I can shake off.
7. My favorite medical TV show is: House, I guess.  He is such an ass.   Most of the time my life is a medical show.
8. A gadget I couldn’t live without is: my laptop.
9. The hardest part about nights are: not being able to sleep.  The night goes by so slowly. TICK TOCK, TICK TOCK. . . pardon the pun.
10. Each day I take __ pills & vitamins:  Around 20, plus two iv’s, and a patch.
11. Regarding alternative treatments I: believe in them whole-heartedly, but sometimes getting to appointments is hard or impossible.  I self teach a lot of alternative therapies.
12. If I had to choose between an invisible illness or visible I would choose:  this is tough to answer — sometimes visible is good because people believe you, but I hate looking sickly.  Either way, people don’t realize how serious this illness is.
13. Regarding working and career:  Forget it.  Not possible.  Now my career is to get healthy.  Trust me, it is a full time job.
14. People would be surprised to know:  I truly thought I would be dead by now.  I thought my child might grow up and not remember his mother.
15. The hardest thing to accept about my new reality has been: the frailty of life.  the frailty of health.  The fact that it can vanish overnight.  Sometimes when I glance at the baskets and bags of my meds, or I am watching a nurse stick a needle in my chest I have a flash of reality.  As in, “Holy shit.  My house is a hospital and my husband is a nurse, and my entire day is spent on my health.  This is my life right now,” It breaks my heart.
16. Something I never thought I could do with my illness that I did was: be thankful for the lessons I have learned and the relationships I have forged.
17. The commercials about my illness: are a joke.  I only know of one, and it was misleading.
18. Something I really miss doing since I was diagnosed is: horse-back riding, snow skiing, flyball.  I fear my son will never know me as the feisty, active person I was and am inside.
19. It was really hard to have to give up: horse back riding.
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: ride my horse, Nika’i, for hours, do a cartwheel, open every jar in the house, run, throw Cooper in the air and catch him.
22. My illness has taught me: how wonderful my friends and family are, how lucky I am to have such a great husband, how strong I am.
23. Want to know a secret? One thing people say that gets under my skin is:  “at least lyme is easily treated,” “you don’t have lyme”, “lyme doesn’t exist in Texas.”
24. But I love it when people: tell me they can see improvement since the last time they saw me. Especially if they tell me the exact changes they see. I love hearing the details.
25. My favorite motto, scripture, quote that gets me through tough times is: Illness is not a sign of spiritual weakness, but of spiritual strength; good health is not the absence of symptoms, but the presence of peace.
26. When someone is diagnosed I’d like to tell them:  recovery from this illness is a marathon, not a sprint.  You will get your life back.
27. Something that has surprised me about living with an illness is: how many people just don’t understand.
28. The nicest thing someone did for me when I wasn’t feeling well was: rub my feet, take the day off work to come cheer me up, send me a card, bring me a meal, tell me I am strong, knit me a prayer shawl, spend time with me, fly across the world or drive across the state to be with me while my hubby was in the hospital.
29. I’m involved with Invisible Illness Week because: I have learned that you never really know what is going on with another human being.  I try to give people the benefit of the doubt and remind myself that I don’t know what physical, emotional, or spiritual challenges a person might be experiencing.
30. The fact that you read this list makes me feel: honored,thankful, and hopeful that I can make a difference.  If even one person learns about lyme or other chronic illnesses through my blog, I will be pleased.