Sunday, October 16, 2011

30 Things About Me...


1. The illness I live with is: Myalgic Encephalomyelitis and POTS (Postural Orthostatic Tachycardia Syndrome)
2. I've been sick since: November 24, 2010. 
3. But I've had health issues since: January 2008.
4. The biggest adjustment I’ve had to make is: EVERYTHING. Literally, the only constant in my life has been my family and my best friend. But, change isn't always for the worst.
5. Most people assume: I limit my activities by my own choice. 
6. The hardest part about mornings are: opening my eyes.
7. My favorite medical TV show is: House. (Dr. House, where are you?!) & Scrubs. JD is adorable.
8. A gadget I couldn’t live without is: my cell phone. (I'm a teenager, duh.)
9. The hardest part about nights is: not being able to sleep, and being alone with negative thoughts. Dealing with the pain.
10. Each day I take (up to) 61 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: recognize them as being very beneficial! Drugs and medications don't fix everything. Our bodies came from nature, why not try natural remedies? 
12. If I had to choose between an invisible illness or visible I would choose: invisible. I'd hate being the "sick girl" everywhere I went.
13. Regarding working and career: I'm going to take on the very illness that has taken over me.
14. People would be surprised to know: I still sing in the shower.  
15. The hardest thing to accept about my new reality has been: the fact that I can't "push through" it.
16. Something I never thought I could do with my illness that I did was: help with a successful benefit show, Hummingbirds. We raised almost $1000 dollars for research for ME/CFS in one night!
17. The commercials about my illness: mostly focus on Fibromyalgia. & the actors are all 40 years older than me. 
18. Something I really miss doing since I was diagnosed is: running.
19. It was really hard to have to give up: running, my job, my youth orchestra, and pineapple.
20. Some new hobbies I have taken up since my diagnosis is: blogging, pill popping, guitar, and yoga.
21. If I could have one day of feeling normal again I would: run. I would run for miles and miles and miles. Forrest Gump style. 
22. My illness has taught me: mental strength, discipline, and self acceptance. (This is a work in progress.)
23. Want to know a secret? One thing people say that gets under my skin is: "You don't look sick". 
24. But I love it when people: do research of their own and ask me questions!
25. My favorite motto, scripture, quote that gets me through tough times: I have many, but I always remember that it could be worse. "Whatever was not planned by me, was planned by God." -Edith Stein
26. When someone is diagnosed I’d like to tell them: "Be persistant, be disciplined, and don't you dare give up. Let the good days be good, and the bad days be bad."
27. Something that has surprised me about living with an illness is: the support and feedback I've received from people I barely knew!
28. The nicest thing someone did for me when I wasn’t feeling well was: not asking how I was feeling, distracting me from the pain/sickness. I love hugs.
29. I’m involved with Invisible Illness Awareness because: so many can't voice their invisible illnesses like I have the opportunity to. 
30. The fact that you read this list makes me feel: hopeful! Hopeful that people will learn to understand. Not just about an invisible Illness, but about tolerance in general. You never know what people are going through. Everybody's got something. 

Sunday, October 9, 2011

Voices from the Shadows

Not only is this complex illness misunderstood, misdiagnosed, and mistreated, it is cast aside and shoved into the darkness by research. The controversy over this proven physical disease is appalling. Some ignorant professionals treat this as psychosomatic. They lock these "lazy, crazy, depressed" patients into wards and force them into inhumane treatments. Sufferers have been kidnapped from their homes and caregivers. They have been robbed of their life.

This documentary is eye-opening, moving, and heart-breaking. I have been blessed with only a mild case of this devastating illness. So many others are completely paralyzed and bedridden. So many are unable to speak up over their pain. So many are dying from the lack of proper care, and lack of awareness.

Please take some time to watch this film. Be educated. Be informed. Be thoughtful of the families and relationships torn apart and the lives lost.

M.E. is a real, horrific disease. Still, I fight every single day. I am not the only person M.E. has placed at a disadvantage. I am fighting for the doctors who lost their jobs trying to protect the truth. I am fighting for the families who watch their loved ones change and wither away before their eyes. I am fighting for the patients who can't see the light, can't walk outside, can't be with visitors, and can't leave their beds. I am fighting for those who have been killed.

We cannot ignore those confined in their paralyzed bodies. 
We cannot turn our eyes away from those who are trapped in the dark. 
We cannot close our ears to the cries from the voices from the shadows.