Tuesday, September 11, 2012


Thirty things about ....
my invisible illness....
that you may not know.....

It's Invisible Illness Awareness Week and I read a very cool list about invisible illness on Judy Westerfield's blog, "CreativitytotheMax." It was amazing to read her answers because it was almost like she read my mind. I'm going to attempt to do the same thing. Now, I'm not going to look at the questions from her blog but let's see if I can do this without plagiarizing!! If they sound alike I'm going to apologize in advance to Judy and Max.

1. The Illness I live with is:  I was diagnosed with Fibromyalgia, Autoimmune Hashimoto's Thyroiditis and Chronic Fatigue. 

2. I was diagnosed with it in:  I was diagnosed with Chronic Fatigue in 1988 after a nasty bout with mono that never went away and Fibromyalgia and Hashimoto's in 2008.

3. But I've had symptoms since:  I had mono in 1988 after my former husband and I went to Squaw Valley on a ski trip. I had no idea that is where it started. I was under control by 1994 and worked until 2008 when I had a nasty car accident and the pain "never went away."

4. The biggest adjustment that I've had to make:  I'd say the biggest adjustment that I've had to make is not working in new home sales. I really loved it and miss it. 

5. Most people assume:  Most people assume that I am an extrovert because of my career in sales. I think I fall into both extrovert and introvert groups. I do well with people but after a day of that I am done. I don't want to answer the phone or see people. I have a foot in both camps. 

6. The hardest thing about mornings is:  Let's face it. I've NEVER been a morning person. EVER. Having said that......ever since the Fibromyalgia hit I not only have to deal with not liking mornings but I also am like the tin man before the can of oil. Every bone in my body hurts and the stiffness in my muscles makes me a real peach. I need caffeine to get the cobwebs out.

7.  My favorite medical TV shows are: Well, I love Doctor Oz. Other than that I'm not big in the medical shows. I favor crime dramas like Criminal Minds and NCIS.

8. A gadget I couldn't live without is my:  Well, that has to be my iPad hands down. That little baby is easy to lift and carry around. I love it.

9. The hardest part about nights are: Muscle spasms. I want to take a baseball bat to my legs. It feels like winding up a spring real tight, letting it go and starting up all over again.

10. Each day I take ( ) pills:  I don't take many because I've found that they don't work for me. I tried Lyrica and gabapentin and gained so much weight that I quit them. It wasn't bad enough that I hurt all the time but when I looked in the mirror I decided that I'd take the pain rather than the weight. I take a lot of supplements though.

11. Regarding alternative treatments:  I haven't done many. I just figure that I'll take what I need to cope with the pain. Massage is always nice but, mostly, I can't stand to have someone rub my muscles like that. It hurts too much. I like essential oils for sleep but do they work? I don't know. I figure they can't hurt.

12. If I had to choose between an invisible or visible illness I would choose:  I wouldn't choose to have either one. If I have to choose I guess it depends on the illness.

13. Regarding work and career:   I had to leave it in 2009. I just couldn't take the rigor of new home sales. I miss doing something.......that's why blogging saved me. It gives me an avenue where I don't feel like as much of a slug.

14. People would be surprised to know: Would I surprise anyone? I don't think so. Most people I know would say, "I'm not surprised" to anything that I could come up with.

15. The hardest thing to accept about my new reality is:  The hardest thing to accept is that this is what it is. It's hard to wrap my head around the word "chronic." I've always believed that it would go away. It won't.

16. Something I never thought that I could do with my illness that I did was: I ran a 5k. Well, I kind of ran it but I finished it with my daughter. Despite the pain I still work out. I'd like to say that whoever said that exercise helps the pain is lying. It doesn't but I do it anyway. I'm still waiting for it to help. What it does is help me cope and makes my mind better.

17. The commercials about my illness:  The commercials really piss me off. Just take our little pill and your life will magically come back. Never mind that pesky little side effect like weight gain or suicidal thoughts.

18. Something I really miss doing since I was diagnosed is:  I miss working. I miss going at mach two with my hair on fire.

19. It was really hard to give up:  Working. Giving up that made me give up a lot of things. It sucks.

20. A new hobby that I've taken up since my diagnosis is: Nothing new. I didn't have that many before and I still do them. Cooking and photography. I can still do that.

21. If I could have one day of feeling normal I would: Probably be so grateful that I'd be still and enjoy it. Who am I kidding.....I'd want to run and shop and play till I dropped!

22. My illness has taught me: My illness has taught me to appreciate my body. It cannot be constantly assaulted and abused. I thought I thrived on stress. I was wrong.

23. Want to know a secret? One thing people say that gets under my skin is:   One thing?  How about  "Well, I get tired too." or "It can't hurt that bad," or "If you just get up and move around you'll feel better."

24. I love it when people: Don't treat me any differently than they did before but understand when I say I don't feel well enough to go out.

25. My favorite motto, quote or scripture that gets me through tough times is:  I always say, "it could be worse."

26. When someone is diagnosed I'd like to tell them:  You will get a lot of opinions about your health and how to feel better. Some will work, some won't. Listen to your own body and know that the advice is well-intentioned.

27. Something that has surprised me about living with this illness:  The one thing that has surprised me is how many doctors are flat out stupid and have zero to no compassion about pain and Fibromyalgia.

28. The nicest thing that someone did for me when I wasn't feeling well was:  They didn't question it they just shut out the lights and let me go back to sleep. Then when I could handle it made me get out of bed and get my fanny moving because they knew I needed that too.

29. I'm involved with Invisible Illness week because:  We not only deal with it on a daily basis but I know I help perpetuate it because when people ask how I feel I always say, "fine."

30. The fact that you read this makes me feel: Happy. Useful. Accomplished. Grateful.


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