Friday, September 16, 2011

My "30 Things"

I was hesitant about participating in #iiwk2011 because of the "misdiagnosis", but I still have things to share, so here we go: 



1. The illness I live with is: lyme disease/ fibro (to be continued, I'm sure.)


2. I was diagnosed with it in the year: lyme: late March 2010 fibro: March 2011


3. But I had symptoms since:March 2010


4. The biggest adjustment I’ve had to make is: learning how to slow down!


5. Most people assume: I feel fine because I look "okay". or I'm being evil because I'm not as open about my pain as they would like me to be.


6. The hardest part about mornings are: Dealing with the lack of sleep from the night before.


7. My favorite medical TV show is: House


8. A gadget I couldn’t live without is: My Blackberry and laptop


9. The hardest part about nights are: trying to sleep (due to pain and insomnia.)


10. Each day I take __ pills & vitamins. <---still searching for the right one(s)


11. Regarding alternative treatments I haven't found anything useful, yet.


12. If I had to choose between an invisible illness or visible I would choose: invisible (or none!)


13. Regarding working and career: None existent right now (due to lay-off and illness)


14. People would be surprised to know how I play down my pain, agony (not being dramatic at all.)


15. The hardest thing to accept about my new reality has been: Nothing is the same: body, hair, skin. Loss of "social 
life"


16. Something I never thought I could do with my illness that I did was: Stay positive (even if I loose that battle some days.)


17. The commercials about my illness are SO misleading (for fibro, I'm yet to see an ad for lyme.) Everyone can't afford 
those meds, but people think we can and as soon as we take it, all is well. Yeah we have good days, but it's an uphill battle.


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


19. It was really hard to have to give up but my voice hasn't been the same for almost a year now.


20. A new hobby I have taken up since my diagnosis is: blogging


21. If I could have one day of feeling normal again I would: take my son on a trip (he has to deal with so much!)


22. My illness has taught me to appreciate life and look for the positive in all situations.


23. Want to know a secret? One thing people say that gets under my skin is 'Well, you look good.' or ;'You lost some 
weight, huh?'


24. But I love it when people don't pester me/ give me my space.


25. My favorite motto, scripture, quote that gets me through tough times is: Galatians 6:9 "And let us not be weary in 
well doing: for in due season we shall reap, if we faint not."


26. When someone is diagnosed I’d like to tell them it's ok to be frustrated and you may have to cry sometimes, but find 
a way to use your voice to help others! Reach out to people that "get it."


27. Something that has surprised me about living with an illness is: Some days, I'm stronger than I think (mentally.) 


28. The nicest thing someone did for me when I wasn’t feeling well was: My son gives me hugs when I feel real bad and prays for me.


29. I’m involved with Invisible Illness Week because people need to understand invisible illnesses affect everyone: big, small, short, tall. No one should be judged.


30. The fact that you read this list makes me feel encouraged. We are not alone in this battle! God bless! xoxo

3 comments:

  1. You were right to participate in Invisible Awareness week and I am glad that you did. Misdiagnosis seems to go hand in hand with auto-immune/invisible illness. You are not alone in this journey and I am glad you continue to realize that you are stronger than you think!

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  2. Thank you, Rhonda! Thankfully, every day we have is another day to gain perspective. xo

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  3. I do not know too much about Fibro but I think I am gonna get to looking it up and begin to support more in this area. Its not a pity party but when i see awesome ppl like yourself dealing with such I want to help! My daughter has Lyme. she is 12. She has had since she was 3 or 4. She gets flare up every now and then and it is so painful. When she cries I cry because I cant take away the pain. Your awesome for being to courageous and staying strong! Shine On sweetie!

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