It's Invisible Disability Awareness Week
From September 8th to the 14th
30 Things About My Invisible Illness You May Not Know
1.
The illness I live with is:
I live with a femoral acetabular impingement, basically a painful hip condition. I also have arthritis in my other joints which gives me widespread pain and it is difficult to walk. My doctors suspect an autoimmune disease causing my widespread pain, however, I have not had all the tests done to diagnose this.
2.
I was diagnosed with it in the year: 2009, so pretty recently, I had my first hip surgery that same year.
3.
But I had symptoms since: My hip pain began when I was 13 years old do to an injury from running cross country. The injury is called slipped capital epiphysis. The head of my femur slipped away from the neck of my femur. My back pain began even before this, at about the age of 11 years old.
4.
The biggest adjustment I’ve had to make is: not being able to do things and go places I want to. I need to just take it easy sometimes and rest my body.
5.
Most people assume: that I have a temporary disability. A lot of people will ask me what happened to my foot. Even, some family members tell me I will get better. Well, I certainly hope so, but things just keep getting worse.
6.
The hardest part about mornings are: first it is waking up to pain. The first thing I think about in the morning is my achy joints. Then it is the dread of taking that first step out of bed to go to the bathroom.
7.
My favorite medical TV show is: House. So sad when it was cancelled.
8.
A gadget I couldn’t live without is: My iPad. When I have days I have to lay in bed for hours, my iPad keeps me company.
9.
The hardest part about nights are: Getting ready for bed. Standing the two minutes to brush my teeth is difficult and painful and I am usually exhausted from the day.
10.
Each day I take anti-imflammatories and a tylenol PM to sleep.
11.
Regarding alternative treatments I: think some of them do work and it is worth a try if you want to try it.
12.
If I had to choose between an invisible illness or visible I would choose: Invisible. I already live with it and have adjusted to it.
13.
Regarding working and career: It definitely takes its toll on the body. I wish my body would cooperate with me so I could work 40 hour weeks and be on my feet once in awhile and not need to spend my whole weekend recovering from the work week. I think being a mother would be even more difficult though. Another life depends on you and you don't get weekends off.
14.
People would be surprised to know: I get really embarrassed sometimes about my disability. When someone only sees me without my crutches, then sees me in a wheelchair I feel embarrassed and like I need to explain myself. I can see the look of confusion on their face.
15.
The hardest thing to accept about my new reality has been: Not being able to do things I want. I miss working out, doing martial arts and going for walks. I wish I could just leave my house without calling ahead of time to make sure there is seating, no lines to wait in, and wondering what walking aid I should bring.
16.
Something I never thought I could do with my illness that I did was: Accept it! I have just recently come to accept that I probably won't get better. Even if I do find a treatment that works I wont be 100%. I kept all my boxing gear because I thought I might be able to use it again. All my gear is going out with the next donation box because I have finally come to accept that I wont be using it again.
17.
The commercials about my illness:
There are none, it is too rare, but there are arthritis commercials. Mostly old people in the commercials.
18.
Something I really miss doing since I was diagnosed is: Dancing, running, boxing, working out, going for walks, sightseeing, and carrying my own luggage through the airport.
19.
It was really hard to have to give up: Martial arts.
20.
A new hobby I have taken up since my diagnosis is:Swimming, I just recently took lessons, and shooting and editing videos. I use to do it for work and I know do it for the animal shelter.
21.
If I could have one day of feeling normal again I would: Go on a shopping spree and walk, walk, walk through all the stores, maybe go to Disney Land, or Las Vegas, or Greece, or Rome.......
22.
My illness has taught me: That I have an awesome family. My family is very understanding of my condition. I hear a lot of people complain about their family putting them down or not understanding. My family totally understands and is supportive. They still want to hang out with me too even though I can only sit most of the time. I feel really lucky to have my family; they are a little cooky, but they are really nice people and really non-judgmental.
23.
Want to know a secret? One thing people say that gets under my skin is: Well, one guy told me it could be worse, I could need to have a surgery. I wanted to punch him and tell him I already had two surgeries.
24.
But I love it when people: offer to help, just opening my door can make things a lot easier.
25.
My favorite motto, scripture, quote that gets me through tough times is: I don't really have one. I guess I should get one.
26.
When someone is diagnosed I’d like to tell them: Find the best doctors you can. Your doctor can make all the difference.
27.
Something that has surprised me about living with an illness is: that strangers are really nosy about my medical history. I don't walk up to strangers and ask them about their medical history.
28.
The nicest thing someone did for me when I wasn’t feeling well was:when my best friend pushed me in a wheelchair when we went to the zoo.
29.
I’m involved with Invisible Illness Week because:
I wish more people would understand that even though you look normal on the outside, you don't know what is going on in the inside.
30.
The fact that you read this list makes me feel: like you have a lot of extra time on your hands, or you really care about me, or you have an invisible illness too.
