Tuesday, September 1, 2009

30 Things About My Invisible Illness

30 Things About My Invisible Illness

1. The illnesses I live with are: myasthenia gravis, fibrolmyalgia, diabetes and osteoporosis. For this I will concentrate on the myasthenia (MG).

2. I was diagnosed with it in the year: unofficially in 2000, officially in 2003.

3. I did not have a positive MG test until July of 2003 (almost exactly 8 years after my first symptoms!) when they came out with a new antibody test called MuSK+.

4. But I had symptoms since: July of 1995

5. MuSK+ MG is more difficult to treat, and can be more life threatening since it always involves the muscles of speaking, swallowing and breathing.

6. There is no cure for MG.

7. The biggest adjustment I’ve had to make is: EVERYTHING is different. But the worst, or hardest thing, was losing my independence.

8. Most people assume: that because I look okay, pretty normal, except for the trach, that I must feel fine, and that if I wasn't overweight I'd be fine.

9. The hardest part about nights are: actually sleeping. I have to sleep on a wedge, I cannot lie flat or I cannot breathe. I have to sleep on one side or the other.

10. Each day I take over 20 pills (including vitamins).

11. I make a 280 mile round trip to get a treatment called plasmaphersis every 3 weeks, or more frequently depending on my symptoms.

12. I have a fantastic neurologist! Shout out to Dr. Teener, U of M.

13. If I had to choose between an invisible illness or visible I would choose: invisible, even though with a visible one people wouldn't be as judgemental.

14. I had to quit working in August of 2000 because of my disease. I tried going back 12 hours a week to an office job, but it was too much, so I tried 8 hours a week, then 4....just couldn't do it. And it broke my heart.

15. People would be surprised to know that if I could change the fact that I have MG and everything that I have gone through, I would NOT do it. I am a different person because of everthing I have been through, and I like me better now.

16. This illness has challenged many relationships, and made the best ones stronger, including my relationship with God.

17. One of the most frustrating things about this disease is that it's very difficult to plan anything. I've always been a planner!!

18. It's also very difficult to be spontaneous, since traveling anywhere requires an entourage of bags, medical equipment, medication, etc.

19. Vacations are challenging! Remembering to pack everything I need, praying none of my equipment breaks! (Although being married to McGuyver helps!) Home is also my "safe" zone. Being away is fun, but always a little scary. Doug is my rock.

20. My husband once fixed my suction machine at 2 in the morning using a wire from one of my earrings. He is amazing.

21. If I didn't have the Lord, I would be dead.

22. I should not be medically be alive. The CO2 in my blood was, at one time, 70% (while I was still working!) At the very least I should have major brain damage. (No comments from the peanut gallery, thank you very much!) ; )

23. My family is amazing and supportive and I would be lost without them.

24. If I could have one day of being "normal" again, I would: get on the floor and play with Jacob all day, then take a long hot bath. (Can't take baths because my muscles relax too much and I can't get out!) One time I fell off the toilet because my muscles just gave out. I never realized how much muscle strength it actually takes to just sit!

25. What amazes me is how God provides enough for every single day. Enough strength. Enough energy. Enough help. Whatever it may be. ALWAYS enough.

26. One thing I've learned is that when the chips are down, you learn who your real friends are. You see character come out. I have been both bitterly disappointed and pleasantly surprised by people. The bitter diappointment is a hard pill to swallow, and it came totally by surprise. The good stuff is great though!

27. The best things you can do for someone with chronic illness is: keep in touch. Let them know you care, and ask for specific ways you can help them. I may feel great today, and barely be able to lift my arms tomorrow. Chronic illness can be very isolating and lonely, and therefore, discouraging.

28. Another thing I've learned is that there are some amazing, courageous, kind, caring, loving, wonderful people out there, some suffering with chronic illness, some not, many of whom I call my friends. I love you.

29. I've chosen to participate in Invisible Illness Week because it is so important for me to educate people about chronic illness. We are NOT lazy people. We don't WANT to ask for help. We don't LIKE being dependent on others. We HATE not having our freedom, not being able to work, or clean our own house or help others with theirs.

30. My illness has taught me to value each and every moment in life. We cannot take any moment for granted, because we will never get it back, and we may never have that opportunity again. We just don't know how much time we have with those we love, so LIVE every moment of your life. Don't waste energy on anger or bitterness or holding a grudge. Life is TOO short!

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


Joanna said...

You should get this published. Good stuff!

Kerri said...

Awww..thanks sweetie.

Rachel said...

Thank you so much for sharing this. It's good to catch a glimpse into the lives of others with invisible illnesses.

Anonymous said...

I sometimes blog about having Bipolar Disorder. One of the most frustrating things for me is that people cannot see my broken brain. Because most of the time I'm level, they think I'm making it up when my mood destabilizes. My mood generally does that when people won't cut me some slack when I tell them I need them to cut me some slack. (I probably sound like I'm going around in circles there.) I am blessed that I have amazing kids and an amazing husband who understand that I'm not ugly for the sake of being ugly. Sometimes when I'm mad, though, people will ask me if I've taken my meds. That makes me angry and sad. I guess I've hijacked your post. Although I would never wish an invisible illness on anyone, it's nice to know you're not alone.

:::visiting from SITS:::

Pam said...

You have an awesome gift to write just how you feel and so to the ppoint. I can relate to so many of the same issues that you deal with daily. It is so good to read makes me feel like I am not alone...it is very difficult having a invisible illness...just last night I was accused by a family member that I take way to much medicine. that hurt since I am doing what I need to do to care for what I am dealing with. I do not like to be the way I am however I am doing the best I am able to with God's help and the help of wonderful doctors. With the support of family and friends.
Taking one second at a time, living life to the fullest of my ability

panamamama said...

My aunt has MG and I'd never heard of it until she was diagnosed. What a great post! I'm going to refer her to your blog! :)

Single Mama NYC said...

You just made me feel ashamed for EVER complaining about ANYTHING. Your courage is a testament to the strength of the human spirit. Thank you so much for sharing this with us.