National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.
30 Things About My Invisible Illness You May Not Know:
1. The illness I live with is: Ehlers-Danlos Syndrome: Hypermobility Type With Crossover features of Type IV, Moderate to Severe POTS. (For a full list see: http://proudtobeaustinsmom.blogspot.com/2009/05/edsmy-diagnosis-dislocations-and.html )
2. I was diagnosed with it in the year: February of 2008 along with my son, and my diagnosis was then again confirmed November of 2008. Though I had symptoms all of my life, no one was able to put all of the pieces of the puzzle together.
4. The biggest adjustment I’ve had to make is: Those two famous words.. Lifestyle Modification..I have had to adjust and modify so many aspects of my life and that in itself i very hard to accept at times.
5. Most people assume: I am a perfectly healthy person.
6. The hardest parts about mornings are: Just getting started, making sure everything is in place before rising, its like your morning safety check..shoulders..check, chest..check...ankles..check...and then just the anticipation of the day, please Lord let everything go smoothly. There is about a 10 minute period interval in the morning when my back pain is "waking up" as I call it and that is hard, it reminds me that the pain does NOT have to be there.
7. My favorite medical TV show is: I dunno, Medical Incredible.
8. A gadget I couldn't live without is: Humm a gadget, well the thingy that helps me open cans and bottles and stuff, sometimes If I don't have it and attempt to open things it not only rips the skin on my hands but will really injure a finger if not holding it right.
9. The hardest part about nights is: Getting comfortable!! Currently my bed rotates between the Bed, the couch and the air mattress.
10. Each day I take: 9 rx medications, 5 vitamins and minerals, and one lovely drink.
11. Regarding alternative treatments: I have not had the opportunity to have any of these but I am just now considering acupuncture in regards to pain...any one have any results???
12. If I had to choose between an invisible illness or visible I would choose: I would choose to not have an illness at all. But this varies at times, many times I wish my pain glowed neon green so people could see my neon orb coming from 10 miles away. But then again it is never nice to be labeled or judged by your cover...humm I guess i get that no matter what.
13. Regarding working and career: This is frustrating. I have worked since I was 16. I have had a dislocation at every job I have had, no matter how simple the job was....just like in my every day life. I run into the problem of chronic absences and that just does not fly with an employer..even when you work for one of the most prestigious children's hospitals in the country you still become a "burden on your department" (okay so that was just one persons point of view but trust me those words stung)..I do what I can but I cant help a lot of things. I left a wonderful job in January because it was just too much and am now struggling to make ends meet with my small income I make watching some neighbor children. At least I get to be here for my son, that part makes up for all the hardships not working has brought on. I have applied for disability and have already been denied once and am working on my first appeal.
14. People would be surprised to know: Well besides that I am a football fanatic...humm...Probaly that if I could be anything I would be a Geologist.
15. The hardest thing to accept about my new reality has been: That there are simply things I cannot do. I get mad somethings because Pokeys Dad will say let me help you...or just automatically do something for me..and I will yell.."I'm not helpless, I can do it!" That I do have a new normal and that it is OK.
16. Something I never thought I could do with my illness that I did was: Accept my lifestyle Modifications!!
17. The commercials about my illness: There are none but if there were I imagine they would be kinda funny...okay so maybe that's a bit rude but I'm just picturing a picture of a person just walking....then like...pop..out goes a knee...then an ankle and so on...."Are you plagued with frequent dislocations....".....
18. Something I really miss doing since I was diagnosed is: I cant say I miss doing anything, I wasn't doing anything I couldn't do, I just do things differently.
19. It was really hard to have to give up: My sense of control. Okay and borrowing from another person here and its totally true..I have given up wearing heels for the most part, only for wedding or special events and usually with a brace or two!
20. A new hobby I have taken up since my diagnosis is: Starting a blog, talking to others that have EDS and educating myself more so I know how to help my son.
21. If I could have one day of feeling normal again I would: Spend one incredible family day out..(the WHOLE day) with Pokey and his Dad then a night alone with Pokeys Dad.
22. My illness has taught me: To be patient, to speak up more, that you will find someone to help you no matter how hopeless it seems.
23. Want to know a secret? I envy a lot of people and they have no idea. And I HATE it when people especially doctors say ...well my your so young to have all these problems..humm maybe if you guys would have figured this all out a heck of long time ago I wouldn't have at least some of these problems...even though I know I know most wold still be here.
24. But I love it when people: Actually ask meaningful questions.
25. My favorite motto, scripture, quote that gets me through tough times is: I have a few but there is a Song by Leann Rimes that I like it has many meanings for me but the chorus is very important. "I will learn to let go what I cannot change, I will learn to forgive what I cannot change, I will learn to love what I cannot change, But I will change, I will change, Whatever I, whenever I can."
26. When someone is diagnosed I’d like to tell them: Hey your not Nuts!! =) I'm glad you finally have answers and welcome to your journey, Please let me know if there is anything I can do for or share with you.
27. Something that has surprised me about living with an illness is: Besides the cost of medications!!!...Humm, The ups and the downs. The good days and the bad days.
28. The nicest thing someone did for me when I wasn’t feeling well was: Come over and taken me for a car ride...no place to go and nothing to see but I just needed to go.
29. I’m involved with Invisible Illness Week because: it's a chance to get the word out about EDS, which affects 1:5000 people and is more common than people think.
30. The fact that you read this list makes me feel: One more person has a glimpse of Ehlers Danlos...and no I'm not just lazy today.
*************TONIGHT IS THE LIGHT THE NIGHT WALK******************
http://pages.lightthenight.org/wa/SeattleL09/nicolasamarie8
Thanks to all who have donated, we will make our trek tonight in honor of Melissa
http://mommytomelanieandallison.blogspot.com/
We didn't make it all the way around last year and My fear is that will be the case this year, but that's not the point, the point is we are there supporting Melissa and her family and helping to fight these nasty blood cancers. I already said that we are walking in Honor of Melissa but its truly an honor to walk for her, shes fought one awesome battle and I am humbled to be a part of her team.
Happy Weekend Everyone...and Seahawks..please stomp on the Bears!!!!
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