Archive for September, 2011

It’s Invisible Illness Week

I’ll fill this one in about Miss M…her life as I see it…(she would probably do it differently, though) Some questions don’t apply to Mariella, because quite honestly, she doesn’t remember NOT having Asthma or having a belly ache.

1. The illness I live with is: Asthma and Gastroparesis

2. I was diagnosed with it in the year: Asthma-2006 (age 2) Gastroparesis-2010

3. But I had symptoms since: Asthma-2006  Gastroparesis-birth

4. The biggest adjustment I’ve had to make is: Mariella-being aware of the things she needs to be aware of-like what her breathing is like.  Also-some foods are just not good for her belly-and she needs to avoid them, even if she loves them.

5. Most people assume: That she is much younger than she is.

6. The hardest part about mornings are: Fitting everything in

7. My favorite medical TV show is: not applicable

8. A gadget I couldn’t live without is: Nebulizer machine or Oxygen monitor

9. The hardest part about nights are: sleeping nearly sitting up

10. Each day I take _2_ pills & 1 vitamins. (No comments, please) Umm can’t do this without comments Also, 2 different inhalers 3 times a day, and 1 liquid medication 3 times a day

11. Regarding alternative treatments I: don’t use them

12. If I had to choose between an invisible illness or visible I would choose: unknown

13. Regarding working and career: Sometimes it’s hard to go to school, last year, M missed 23 of 180 days

14. People would be surprised to know: that she often feels much worse than she appears to.

15. The hardest thing to accept about my new reality has been: This has literally always BEEN her reality

16. Something I never thought I could do with my illness that I did was: unknown

17. The commercials about my illness: Inhalers…it makes her excited to see them.

18. Something I really miss doing since I was diagnosed is: unknown

19. It was really hard to have to give up: Bananas

20. A new hobby I have taken up since my diagnosis is: none

21. If I could have one day of feeling normal again I would: run and play without having to stop for an inhaler or treatment

22. My illness has taught me: unknown

23. Want to know a secret? One thing people say that gets under my skin is: Mommy-“oh, I thought she was so much younger” or “why doesn’t she grow?”  If we knew…we would fix it.

24. But I love it when people: treat her like every other kid.

25. My favorite motto, scripture, quote that gets me through tough times is: Mommy-“it is what it is”

26. When someone is diagnosed I’d like to tell them: Most people get much better control than we have.  Control IS possible, it just may take a while.

27. Something that has surprised me about living with an illness is: Unknown

28. The nicest thing someone did for me when I wasn’t feeling well was:

29. I’m involved with Invisible Illness Week because: It’s important to know that not only adults suffer from invisible illnesses.

30. The fact that you read this list makes me feel: Good that others will be aware.