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: TMJ Disorder
2. I was diagnosed with it in the year: 2005
3. But I had symptoms since: 2004
4. The biggest adjustment I’ve had to make is: Giving up sugar free gum. I loved my Extra!
5. Most people assume: TMJ Disorder is just some minor jaw pain or that it can be cured. I will never be cured. There is NO way to prevent me from clenching and grinding my teeth during my sleep.
6. The hardest part about mornings are: Good question. The first minute when I wake up is typically the most painful of the day. I have to unclench and relax my tense jaw. Then the headache and neck pain go away (almost).
7. My favorite medical TV show is: I used to love Rescue 911!
8. A gadget I couldn’t live without is: My night guard. I’m on my third one. After biting two of them in half, I think I’m pretty stable.
9. The hardest part about nights are: Nights are when I do the most damage. You can clench and grind so much harder in your sleep than you ever could while you’re awake. And you have not control over this!
10. Each day I take __ pills & vitamins. 2
11. Regarding alternative treatments I: see a chiropractor. Massage therapy, physical therapy, exercise and any stress reducing activity help some.
12. If I had to choose between an invisible illness or visible I would choose: I’ll stick with my own invisible illness. Especially now that I’m doing okay. I’m not perfect, but I’m at a highly functioning level.
13. Regarding working and career: My jaw used to spasm at work when I was talking to co-workers. That was so embaressing! Also, when I was working full time, I dreaded company lunches. First, you always read about how supervisors judge your table manners, and I can’t eat like a normal person. Second, they always order pizza or sandwiches, the two most difficult things for me to eat. I can do sandwiches that are on thin bread and cut in half, but biting into subs or thick crusty bread is impossible. Even on good days. It’s always humiliating putting something up to your mouth, struggling with it for 30 seconds, and then having to put it down in front of your boss.
14. People would be surprised to know: My front teeth no longer touch. My jaw has deformed itself.
15. The hardest thing to accept about my new reality has been: It hurts to eat. I’m passionate about food. I was a culinary arts major. Pain while eating is tough to swallow (huh, huh).
16. Something I never thought I could do with my illness that I did was: Floss. I know, I know. It’s gross. But for probably two years I couldn’t floss. You can imagine how difficult having dental work done was.
17. The commercials about my illness: I’ve never seen a commerical for TMJ Disorder treatments. Probably because so many insurance companies don’t cover treatment anyway.
18. Something I really miss doing since I was diagnosed is: Chewing gum.
19. It was really hard to have to give up: Steak
20. A new hobby I have taken up since my diagnosis is: Seeing Dr. Bender, my incredible, gift from God specialist. I feel like I’m friends with him and his staff. I see them more than I do a lot of my friends.
21. If I could have one day of feeling normal again I would: Eat a big steak with corn on the cob, drink a milkshake (no sucking thick liquids out of straws for me!), eat a bunch of carmels for dessert, and chew lots of gum. And then I’d make out with my husband. I’ll bet you didn’t think about that last one!
22. My illness has taught me: that I do not handle stress well.
23. Want to know a secret? One thing people say that gets under my skin is: “Why do you think you have TMJ Disorder?” That comment was made by the last dentist I saw. I hate seeing new dentists. They always want to look at my night guard. I always tell them, “No, Dr. Bender is my TMJ Disorder specialist.” Truly, the only negative comments I’ve received about my TMJ Disorder have been from dentists and hygenists. The hygenists always try to give me tips on how to deal with TMJ Disorder, and I always end up correcting their advice. They continue to try to tell me what to do. Then I lay out the list of foods I couldn’t eat and mention how I couldn’t sing in church for two years and they shut up.
24. But I love it when people: pray for me. You can bet that a few days after David’s arthritis flares, I’ll need some prayer for my jaw!
25. My favorite motto, scripture, quote that gets me through tough times is: TMJ Disorder is a terrible but effective diet plan. – That’s my little joke. Psalms like Psalm 4:8 I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety. Or Matthew 6:25-34
26. When someone is diagnosed I’d like to tell them: To call Dr. Bender! Actually, I tell lots of people that before they get diagnosed. I carry lots of his business cards in my purse and give them out when someone tells me they have jaw pain. Also, I like to tell people how much physical therapy helped before I met Dr. Bender. Unfortunately, that therapist is no longer here in Dallas, so I can’t send people to her anymore.
27. Something that has surprised me about living with an illness is: how many areas of my life are affected.
28. The nicest thing someone did for me when I wasn’t feeling well was: My mother prepares special food for me when I can’t eat what everyone else is having. She also massages my neck and scalp when I’m hurting.
29. I’m involved with Invisible Illness Week because: of David’s arthritis. Since I’m my jaw is so much better than it was, it didn’t occur to me that I had a chronic illness until recently. His arthritis is so much worse than my jaw pain, it’s easy to overlook my “minor” issue.
30. The fact that you read this list makes me feel: good.

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

I’ll see if David will fill this list out, too.

Related Posts:

• Chronic Illness and Finances
• TMJ Disorder
• Invisible Illness