Sunday, September 1, 2013

30 Things About My Invisibility You May Not Know.

With Invisible Illness Awareness Week just around the corner, I thought maybe it's time I share my story.
There are millions of stories out there so particularly I wouldn't consider mine much of anything, yet I represent a large part of the community both the mental illness community and the physical illness community.

I am living with Bipolar Schizo-affective Disorder and Systemic Lupus Erythematosus (SLE).

"Approximately 96% of people who live with an illness have an illness that is invisible. These people do not use a cane or any assistive device and may look perfectly healthy" (2002 US Census Bureau). This is a major problem with invisible illness, this is my biggest obstacle in day to day life. I have no cane to walk with, no wheelchair to aid me, no back brace showing my pain. I look like any other woman you may see walking down the street with her family. Yet with each step I take I break a little inside. My joints are swollen with arthritis, my ankles have sever bone spurring and extra bone growth, my spine is riddled with inflammation. This does not stop me, I refuse to let it. I'd rather walk than sit, play than watch, learn than shut down. Like millions of other suffers, I'd rather live than waste away. I'm blessed with a family that is super supportive, and my husband who is still just a marvel to me.

This is the 30 things about my illnesses you may not know. 

1. The illness I live with is: Bipolar Schizo-affective and SLE
2. I was diagnosed with it in the year: 1999 BP/SA and 2011 SLE
3. But I had symptoms since: As long as I can remember for the BP and since the age of 10 for SLE.
4. The biggest adjustment I’ve had to make is: Seeing myself as sick.
5. Most people assume: I'm lying.
6. The hardest part about mornings are: Putting my feet to the floor.
7. My favorite medical TV show is: House, because there is always a cure. Plus his sarcastic nature is right up my alley.
8. A gadget I couldn’t live without is: My computer.
9. The hardest part about nights are: Laying down.
10. Each day I take _13_ pills & vitamins, mostly vitamins. (No comments, please)
11. Regarding alternative treatments I: am highly supportive and practice them myself.
12. If I had to choose between an invisible illness or visible I would choose: Neither, they both bite.
13. Regarding working and career: I am going to school full-time with International Relations/Linguistics as my Major. I hope to work with others who not only suffer from illness but struggle with daily life especially on the international level. Working for UNICEF or the U.N. is my ultimate goal.
14. People would be surprised to know: That both my Psych and PCP doctors are shocked at my well-being and that even with both these illnesses. 
15. The hardest thing to accept about my new reality has been: That I cannot do it all, that I have to accept days when getting out of bed is nearly impossible.
16. Something I never thought I could do with my illness that I did was: Function without medications. I'm 11years off Psych medications and instead use Cognitive Behavioral Therapy.
17. The commercials about my illness: are non existent that I know of.
18. Something I really miss doing since I was diagnosed is: Bikram Yoga.
19. It was really hard to have to give up: because I felt so much better after doing it.
20. A new hobby I have taken up since my diagnosis is: writing.
21. If I could have one day of feeling normal again I would: Go to the beach with my family and spend most of it in the sun!
22. My illness has taught me: it's okay to take a break and go slow with things.
23. Want to know a secret? One thing people say that gets under my skin is: "Oh it's not that bad." or "That's horrible!"
24. But I love it when people: Laugh and say "Damn that sucks."
25. My favorite motto, scripture, quote that gets me through tough times is: A body in motion stays in motion.
26. When someone is diagnosed I’d like to tell them: There may be no cure, but there's no death sentence either. You can still live and it's living that is important.
27. Something that has surprised me about living with an illness is: How little people know about it.
28. The nicest thing someone did for me when I wasn’t feeling well was: ordered dinner. My husband is awesome.
29. I’m involved with Invisible Illness Week because: more people should know the truth.
30. The fact that you read this list makes me feel: Excited.

One of the many blood work bruises I get left with.

Pulling plasma, one of the few treatments I'll accept.

Making best of being in the hospital. I don't think they like it much when he curls up in the bed with me.

Two days after I got my official diagnosis. NEVER STOP LIVING!!!

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