Thursday, September 16, 2010

30 Things About My Invisible Illness You May Not Know

As part of invisible Illness here are my 30

1. The illness I live with is: To many, JRA, MCTD, Felty's
2. I was diagnosed with it in the year: approx 1985
3. But I had symptoms since: 1984
4. The biggest adjustment I’ve had to make is: asking for help
5. Most people assume: I'm not sick because I look fine, or I am mean
6. The hardest part about mornings are: getting up
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is:
9. The hardest part about nights are: my mind won't stop thinking so I can sleep
10. Each day I take __ pills & vitamins. (No comments, please)6
11. Regarding alternative treatments I: yoga, bellydance, massage therapy, reiki
12. If I had to choose between an invisible illness or visible I would choose: invisible
13. Regarding working and career: I thought I would be further along than I am, and am slowly accepting I will need disability
14. People would be surprised to know: That I struggle emotionally and physically on a daily basis, because I hide it from them.
15. The hardest thing to accept about my new reality has been: been at it for 25 years this is not new to me
16. Something I never thought I could do with my illness that I did was: Have a beautiful daughter
17. The commercials about my illness: make me laugh,
18. Something I really miss doing since I was diagnosed is: I was 8 I dont remember
19. It was really hard to have to give up: running and dancing
20. A new hobby I have taken up since my diagnosis is: crafts
21. If I could have one day of feeling normal again I would: run a marathon
22. My illness has taught me: patience, humility, kindness, acceptance
23. Want to know a secret? One thing people say that gets under my skin is: why do you get to park in handicap
24. But I love it when people: help me without me having to ask, my inner circle knows
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them: Things will be fine and I am here to listen and help.
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was: brushed my hair, bring my ice cream. Listen to me, and hold me when I freak out
29. I’m involved with Invisible Illness Week because: There are so many wonderful friendships I have made. I need even more and need to have our voices heard.
30. The fact that you read this list makes me feel:

Friday, September 10, 2010

Hope and changing plans

Things like this aren't easy for me to say. Since its been on my mind and even jogging hasn't helped me push past it, maybe writting it will give me release.

I had all these plans, that I thought were your plans too. We discussed them in great detail. Even altered them to fit your schedule. You let me down and it hurts.
If you changed your mind, thats fine, (I change my mind all the time) At the instant you changed your mind, you should of come to me. You let it go on and on. March, May. I held up my end which was harder than what you had to do. I cleaned up my act, my body, got meds out of my system. It was now time, you said NO. It cut, it burns, its betrayl. I would of been hurt either way, but I wouldnt of put the effort in; time and energy I can't get back.

But now I see this wasn't meant to be. And yes I need to get over it. Pick myself up, dust myself off. Move on. I've done it before, its not easy. I need to stop the "what ifs". I am still angry. instead of being where I thought we would be right now, my harsh reality is one of starting back on the meds, I worked so hard to clean out of my body (hated them anyway). I now realize I liked not taking them. This weekend I will start back on the MTX (was a big girl and called to get a new script today), I will wait to see how sick I get, I will see how much hair I lose this time around. I will do it with grace, snd maybe a little anger.

The next 30 days, I need to build up this drug in my system so I can take another drug I would rather not have to. I also thought that I wouldn't be trying to figure out how to pay for it. Which you also used an excuse to get out of a deal we made (fighting dirty isnt my style)

Thank god, I am smart. I am enrolled in an assistance program. I jumped through your damn hoops Insurance companies. What I have to pay still stinks but its not nearly as much. I will be pumping my vacation fund into my arm on Oct 8th and Oct 22 for 6 hours each time. Happy Birthday to me.

And with that, it leaves one more issue that needs to be handled this weekend. The words TAKE OVER & OWNERSHIP come to mind.

I will be fine, I always am. Just been unhappy lately. Jogging has been my release. And now its time to handle this