30 Things - Invisible Illness Week

 30 Things You May Not Know

1. The illnesses I live with are: Lupus, Rheumatoid Arthritis and Fibromyalgia

2. I was diagnosed with it in the year: Lupus - 2007, Fibromyalgia, 2008, RA - 1980

3. But I had symptoms since: Birth.

4. The biggest adjustment I’ve had to make is: Stopping working and what surrounds that on a dime.

5. Most people assume: That it can't be as serious as it is.

6. The hardest part about mornings are: Going to sleep. I do not wake up or keep 'normal people'  hours. 

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: My laptop. It is my lifeline.

9. The hardest part about nights are: Getting to sleep. Nighttime is my time, I feel somewhat functional, at peace and happy. 

10. What do you take? I should take more than I do. It does vary per day. At least 10 pills/vitamins/day.

11. Regarding alternative treatments I: am very open to. I prefer the options of alternatives than to the 'big pharma'.

12. If I had to choose between an invisible illness or visible I would choose: Neither? Both have the severity and challenges to live with, sometimes overlapping each other.

13. Regarding working and career: I prided myself on my career, my work, my education and training that led me to do what I chose to do with the opportunities that I had.

14. People would be surprised to know: I am very scared and I get angry.

15. The hardest thing to accept about my new reality has been: The struggle to find medical professionals that I trust, that I feel my care is taken seriously and the length of time - years this has been.

16. Something I never thought I could do with my illness that I did was:  Fight to come back when I was at the zero hour.

17. The commercials about my illness: Are a joke. If I feel suddenly well enough to get on my knees I sure as hell am not going to start a garden.

18. Something I really miss doing since I was diagnosed is: Dance, teaching.

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

20. A new hobby I have taken up since my diagnosis is: Writing this blog!

21. If I could have one day of feeling normal again I would: Throw a party and dance on the speakers. And noone will stop me, but including everyone to dance with me.

22. My illness has taught me:  Accepting loss.of independence does not mean a loss of self.

23. Want to know a secret? One thing people say that gets under my skin is: "What is wrong NOW, you LOOK fine". (Said to me when I was first in the wheelchair)

24. But I love it when people: Include me, help me with the little things, make me laugh, accept me for me.

25. My favorite motto, scripture, quote that gets me through tough times is: "She's home now, She's gone far beyond that song, Rock and Roll Ballerina, where else would she go" - Rock a Little - Stevie Nicks

26. When someone is diagnosed I’d like to tell them: It's going to take a long time, new hells will happen. be your own advocate, stand strong with doctors.

27. Something that has surprised me about living with an illness is: The support from people that have stuck with me thick and thin.

28. The nicest thing someone did for me when I wasn’t feeling well was: I have been so ill where I could not do ANYTHING for myself, and to help, no questions asked, and no guilt.

29. I’m involved with Invisible Illness Week because: AWARENESS is needed for these illnesses that are severe, take lives, and take our lives as we watch it happen. We need our voices in the sea of many illness because these are so misunderstood.

30. The fact that you read this list makes me feel: Like it's okay to talk about, that I am still me, not defined by the illnesses, nor the limitations.

Thank you for supporting and taking the time. It is much appreciated and loved. 

Thank you, so so much.