30 things ou may not know about my illness lupus

30 Things You May Not Know About My Illness

I saw this on fellow blogger Melanie’s blog and I thought i’d fill it out also. It’s very telling.

1. The illness I live with is: Lupus, end stage renal disease, avascular necrosis, (what appears to be) chronic anemia.

2. I was diagnosed in the year: 1996

3. But I had symptoms since: I didn’t notice anything until just days before I was diagnosed.

4. The biggest adjustment I have had to make is: Not being able to be involved in everything. I’m still not used to saying “No, I cannot do ____ because I’m tired/sick. I was diagnosed in November of 1996, and in my school year prior to that, I was class president, class valedictorian, and involved in every sport/aspect of school. I went from 100%-0% in just a few months.

5. Most people assume: That it is probably not as bad as it is because I do not really let on that I’m sick or in pain when I am.

6. The hardest part about mornings is: Waking up on time to disconnect myself from my dialysis machine and get to wherever it is that I’m going on time, whether it’s work, school, etc.

7. My favorite medical TV show is: Trauma: Life in the ER. I love the dramatizations as well as the bizzarre cases.

8. A gadget I couldn’t live without is: My Crackberry. My blackberry.

9. The hardest parts about nights are: Trying to actually fall asleep. I think there might be an underlying fear in my mind that I’m going to turn around/turn over and rip my needles out of my arm or rip the lines off my dialysis machine.

10. Each day I take: a wheelbarrel full of medication.

11. Regarding alternative treatments: I think it’s always great to try as long as it’s safe and doesn’t conflict with my other treatments/medication.

12. If I had to choose between an invisible illness and a visible one I would choose: It’s hard to say. With an invisible illness, because people cannot physically see it, sometimes they cannot empathize. It’s hard being on the bus and being forced to stand up for someone with a broken foot because no one else will get up and you don’t want to look like a jerk. At the same time..I really don’t want to have a visible illness whereby people will look at me and feel “sorry” for me.

13. Regarding work and career: There is no way that I am letting Lupus or anything else get in the way of anything I really want to do in life.

14. People would be surprised to know: Well, most people don’t know that I have a dialysis machine sitting in my bedroom, nor do most people even know I’m on dialysis at all. If they do…they don’t know or understand the gravity of it.

15. The hardest thing to accept about my new reality is: That I have to slow down and not do things as frequently/quickly as I used to.

16. Something I never thought I could do with my illness was: Travel, especially with renal failure. It was only a few years ago that found out about travelling while on dialysis. While it’s definitely not ideal, it is much better than staying at home all the time.

17. The commercials about my illness: What commercials? The one that shows a million faces? It does not portray this devastating illness at all.

18. Something I really miss doing since I was diagnosed: Doing things on a whim..now, everything has to be planned. No spur of the moments road trips or anything like that. That and doing physically demanding activities.

19. It was really hard for me to give up: Sports. With my joint pain, I cannot run, I cannot play basketball, etc. Very devastating for me as I’ve always been an active person.

20. A new hobby I have taken up since my diagnosis is: Blogging and Cake decorating 🙂

21. If I could have one day of normal again I would: Go for a jog/hike.

22. My illness has taught me: To be patient with myself and others.

23. One thing people say that gets under my skin is: That I need to take care of myself. Really? So washing down my medication with a bottle of Jack Daniels isn’t considered taking care of myself? SHADDAP!

24. But I love it when people: Give me hugs. I love hugs.

25. My favorite motto, quote, etc is: What you cannot change, don’t let it change you. My Daddy taught me that one ❤ .

26. When someone is diagnosed I would like to tell them: I’ve been there. Just be strong, be optimistic, and don’t give up.

27. Something that has surprised me about living with an illness is: How much control you lose. I couldn’t believe how weak I got and how much my body changed because of it.

28. The nicest thing someone has done for me when I wasn’t feeling well was: Visit me with food. Not much beats that.

29. I’m involved with Invisible Illness Week because: I actually didn’t know about it until now. I guess I’m late! :\

30. The fact that you read this makes me feel: Really good-and I hope it gives you a peak into my life! 🙂



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