Thursday, November 19, 2009

30 Things You Might Not Know About My Illness...

1. The illness I live with is: Vasculitis of an unknown type. Cerebral Palsy and a bunch of other small conditions such as allergies and asthma.
2. I was diagnosed with it in the year: Cerebral palsy- officially from about a year old but my parents knew something was wrong way before that. The Vasculitis was diagnosed in 2008.
3. But I had symptoms since: 2005, It started off as skin lesiens on the back of each leg and a general
4. The biggest adjustment I’ve had to make is: Relying on carers and parents for more than I ever have before and recognising I have yet another new ‘normal’.
5. Most people assume: That because I look ok or because I have a smile on my face I must be ok... This is generally far from the truth... 6. The hardest part about mornings are: I have to psych myself to get up knowing full well that once I do I am going to be setting off pain as well... I have to build up courage to fight!

7. My favorite medical TV show is: ER and House!
8. A gadget I couldn’t live without is: My Computer -- Its my lifeline to the outside world!!!!! And my and wheelchair too of course!!

9. The hardest part about nights are: They are soo long. Most nights I have trouble falling asleep and then can’t stay asleep for more than 1 hr at a time.
10.Each day I take: A number of pills. Some days I take more than others and each day the side effects seem to be different.
11. Regarding alternative treatments I: have tried some but not all... Some would only make it worse!

12. If I had to choose between an invisible illness or visible I would choose: Well, because I am in a wheelchair its visible to a degree but Vasculitis is classified a hidden illness...There are MANY levels and degrees of mobility, disability and pain in this disease. EVERYONE is different... Many people do not understand why there is so much riggamorile around getting out... Why I can not always get out or have to pull out on people at last minute... It sux but its the way it is... Sometimes I'm just not well enough to get out no matter how much I try to push myself...

13. Regarding working and career: I really want to work but need to find something really flexible (perhaps work from home) because of my medical issues.
14. People would be surprised to know: How much it takes me to just "get out", or even function on the level that I do

15. The hardest thing to accept about my new reality has been: Not being able to do so many of the things I love! And accepting (and getting other people to understand) that I have more limitations now.
16. Something I never thought I could do with my illness that I did was: Endure being constantly criticised and critiqued despite doing my best without taking it personally to the point of dragging me down and not caring what others think when they don’t have nice things to say or pass unfair judgement... It just makes me more determined than ever to prove them wrong!!

17. The commercials about my illness: Are non existent...

18. Something I really miss doing since I was diagnosed is: If I let myself go down this track the list would be endless but a few things are horse riding, my pt program, guitar lessons.
19. It was really hard to have to give up: Even more of my independence.

20. A new hobby I have taken up since my diagnosis is: CaringBridge! Updating my journal, following others and signing guest books! I have also started searching out, studying and researching a whole host of things more in depth!

21. If I could have one day of feeling normal again I would: Go out and have an action packed fun filled day fulled with all the activites I used to love... rock climbing being one of them!

22. My illness has taught me: That I can still make an impact and difference with my life in spite of my situation and limitations.
23. Want to know a secret? One thing people say that gets under my skin is: "You look sooo well - you must be feeling great/ getting better" and “But you don’t look sick” or you are just fat
24. But I love it when people: Treat me as normal and visit me in spite of, take time to talk with me. Hang out with me and make an effort and are willing to accommodate for me! I'm blessed to have friends who have stuck around and encouraged me when I've felt really flat and haven't made me feel guilty when I have had to cancel out last minute... Which is something I hate to do.

25. My favorite motto, scripture, quote that gets me through tough times is: Placing one foot in front of the other, I've climbed to higher lengths. Reaching beyond my own limitations, to show my inner strength. No obstacle too hard, for this warrior to overcome. I'm just a man on a mission, to prove my disability hasn't won.
-- Robert M. Hensel

26. When someone is diagnosed I’d like to tell them: To fight
for their treatment... To hang in there no matter what and to never give up hope!!

27. Something that has surprised me about living with an illness is: How much I have to justify my mental state to insurance as they try to find ways to disqualify me from their services... And how quickly people jump to their own conclusions or try and pass judgement. You really are your best advocate and you have to keep fighting no matter what when it comes to insurances!!

28. The nicest thing someone did for me when I wasn’t feeling well was: Be there for me and messages on my blog and caringbridge page.

29. I’m involved with Invisible Illness Week because:I want to create and spread awareness... You can not always judge on outward appearances...
30. The fact that you read this list makes me feel: That you care... That you took the time to read this and understand a bit more about things in my world!

1 comment:

Melissa Holm said...

Hi Karen,
We're glad that you've been able to connect on CaringBridge and hope it continues to be a source of support for you.

Kind regards,

- Melissa Holm, Media Relations Specialist, CaringBridge