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Monday, August 29, 2011

30 things about my invisible illness that you may not know

For invisible illness awareness week!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Cushings Disease: I have a tumor on my pituitary gland which causes an overproduction of cortisol, which is the bodies natural steroid. my body produces 8x's the amount that yours does... only 1 in 500,000 have this disease...
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: probably high school, but they really started appearing the past 4-5 years. but the drs just said i was fat. and needed to diet. and exercise. so i did, but it didnt help.
4. The biggest adjustment I’ve had to make is: that I have to let people help me, let my guard down and trust people to be there. I'm not as independent as I was. I can't work or go out whenever I want.
5. Most people assume: That everything is fine because I'm smiling, or that I don't need people to say, how are you? or ask me to hang out. why do I need to keep our friendship going? I'm tired of it, and I'm done doing it. 6. The hardest part about mornings are: trying to wake up, walking
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My crackberry
9. The hardest part about nights are: falling/staying asleep. Not scratching myself to death. The stria itches like crazy
10. Each day I take __ pills & vitamins. (No comments, please) I take about 15-20 pills a day
11. Regarding alternative treatments I: I LOVE reiki and I love @thehealingpath
12. If I had to choose between an invisible illness or visible I would choose: It depends. No one believed my headaches until I had the crainiotomy and had half of my head shaved! But then again, certain bitches decided that I threw myself down the steps to break my foot so I could get out of going to work and I could go to the beach.
13. Regarding working and career: I miss working, but there's no way I can go back right now. I need more treatments, I can't drive long distances or focus for long periods of time. I don't know that they care that much either. But I would like to be doing something. 14. People would be surprised to know: that I feel broken and I fear being a burden to my loved ones. and that I feel ugly... I know it's crazy but... it's true.
15. The hardest thing to accept about my new reality has been: I cant see out of my right eye and I keep walking into things, or I forget alot bc of the brain tumor/surgery
16. Something I never thought I could do with my illness that I did was: Fall head over heels in love with the man of my dreams
17. The commercials about my illness: there are none.
18. Something I really miss doing since I was diagnosed is: going to the beach, going to the bar, dancing, laughing, hiking,
19. It was really hard to have to give up: im a busy bee! i always do lots
20. A new hobby I have taken up since my diagnosis is: relaxing :)
21. If I could have one day of feeling normal again I would: go to wildwood, ride the coasters, run in the ocean, have a few margaritas, dance the night away
22. My illness has taught me: that I don't have to be so strong all the time. It's ok to let people in. I've also learned who I can and cannot count on.
23. Want to know a secret? One thing people say that gets under my skin is: It's gonna be ok. or how's your eye? or... my favorite, you mean you really cant see?24. But I love it when people: send me random messages saying theyre thinking of me. or cards. i love cards.
25. My favorite motto, scripture, quote that gets me through tough times is: never lose hope. never lose faith. never ever give up.
26. When someone is diagnosed I’d like to tell them: this sucks, but we can get through it together.
27. Something that has surprised me about living with an illness is: that it's not so bad relying on other people. and I love my cushie friends.
28. The nicest thing someone did for me when I wasn’t feeling well was: surprise visits at the hopsital :) my team nicci jersey crew coming out here to take me to dinner, jennie having her 25th bday by MY house bc i couldnt go an hour 1/2 away
29. I’m involved with Invisible Illness Week because: people need to know it's not so easy being us.
30. The fact that you read this list makes me feel: that maybe you really give a shit :)

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