Thursday, September 16, 2010

In Honor of Invisible Illness Week: 30 Things You May Not Know about My Illness

1. The illness I live with is: Lupus and endometriosis. You can throw a couple other things in there as well, but most relate back to these two.

2. I was diagnosed in the year: 2008

3. But I had symptoms since: 2002-ish

4. The biggest adjustment I have had to make is: Accepting the reality of chronic pain/illness and how it makes it harder to be a normal college students. I am constantly assessing the way my body feels to make sure nothing is seriously going on with it. I am unable to do many things my friends are able to do because it leaves me too tired and in pain or worse, in a full blown flare.

5. Most people assume: That I do not live with chronic pain.

6. The hardest part about mornings is: Pain level assessment and then moving if it is too bad.

7. My favorite medical TV show is: Hmmm...Trauma: Life in the ER? Because if I do pursue nursing/medical school then I want to work in acute care.

8. A gadget I couldn't live without is: My computer. Tried it. Doesn't work.

9. The hardest parts about nights are: I am one of the worst insomniacs I know. Also, my pain levels are worse at nights most of the time.

10. Each day I take: Immune system modifiers, pain medicine, medicine to keep my stomach happy with all the medicine, migraine preventative and hormones for the endo. In other words, far too much.

11. Regarding alternative treatments: They are all fine and good in conjunction with traditional medicine.

12. If I had to choose between an invisible illness and a visible one I would choose: Tough one. I feel like I would be judged less and understood more if people could somehow "see" lupus. If you were to look in my insides you would most certainly "see" endo, but that's a little difficult. However, I like that I look healthy, and when lupus made my hair fall out I was very self-conscious. So I guess I would choose invisible because of the way I militantly try to live my life as normal.

13. Regarding work and career: Still trying to figure this out. I have a general idea of what I want to do with my life and I hope lupus doesn't try to take that away from me.

14. People would be surprised to know: Most people I know now did not know me pre-diagnosis so I think they would be surprised at just how sick I was back then. It will be almost three years since my last hospitalization which was absolutely unheard of just a few years back.

15. The hardest thing to accept about my new reality is: The constant reassessment of abilities. I know what I want to do and I hate when my body slows me down.

16. Something I never thought I could do with my illness was: I never believed I couldn't do anything. As the saying goes "I may have lupus, but lupus doesn't have me". It may take longer or be done in a different way, but it gets done.

17. The commercials about my illness: Do not accurately portray it.

18. Something I really miss doing since I was diagnosed: Going out with friends and being able to enjoy myself instead of having to leave early because of pain/fatigue. And wearing heels!

19. It was really hard for me to give up: My perception of a "normal" college student/young adult.

20. A new hobby I have taken up since my diagnosis is: Blogging!

21. If I could have one day of normal again I would: Clubs/bars and actually enjoy it.

22. My illness has taught me: Compassion and unfortunately, who I can depend on and who I cannot.

23. One thing people say that gets under my skin is: I hate judgments about the amount of medicine I take. TRUST ME - I hate it too. Also anything about not looking sick, blah blah blah.

24. But I love it when people: Offer to help, because I hate to ask for it. And when people try to understand.

25. My favorite motto, quote, etc is: Nothing to do with chronic illness. "Once good thing about music, when it hits you, you feel no pain." - Bob Marley. But I guess that can relate to lupus.

26. When someone is diagnosed I would like to tell them: Hold on. One day there will be a cure. Just keep faith and do the best you can.

27. Something that has surprised me about living with an illness is: How alienating it can be. You really see the best and worst in people.

28. The nicest thing someone has done for me when I wasn't feeling well was: Make me soup!

29. I'm involved with Invisible Illness Week because: I want to raise awareness so maybe people will be less judgmental and more accepting and understanding.

30. The fact that you read this makes me feel: Great! Thanks for sticking through it!!

Sorry I have not been posting much lately. I have been so busy. I am hoping to get adjusted soon so I can get back to regular blogging!

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