“Existing in a World that Feels Like it’s Not Designed for You “

Posted on March 28, 2013

“I don’t usually write personal posts because I try to focus on making my site a place where ON/AVN sufferers can find information  There is so much more I have to add to my site and I feel like I haven’t achieved as much as I wanted to at this point, but I’ve learned that you can have all the expectations and make all the plans in the world but life might have something all together different planned for you.

Never in a million years would I have imagined that at the age of 35 I would be walking around with a walker. When I see someone else with a walker they are usually twice my age. I lived with my parents for nearly a year, due to the disability caused by my ON/AVN, and coming back to living in a city as a disabled person has been been challenging, often frustrating and sometimes upsetting.

I never knew what it was like to function in this world as someone with a disability and over the last year I have noticed more and more that many things just aren’t designed with disabled people in mind. Disabled bathrooms often aren’t big enough to fit a wheelchair in, not every street corner has a dip over which you can push a wheelchair or walker. Flying is not fun, especially when you are in a wheelchair and have to make a connection. People aren’t as patient as you would expect them to be. Travelling on public transport is amazingly challenging. When I travel to the pool to do my physical therapy people who aren’t disabled sit in the front seats of the bus and don’t move when you come on with a walker and act annoyed when you get in their way. People my age stare at me all the time, I’m not sure they even know they are doing it. I know it’s weird to see someone young, who looks otherwise completely healthy, hobbling by with a walker.

I got sick very soon after moving to San Francisco from New York, but before I started having pain due to my ON/AVN, I had my future planned out. My husband and I wanted to start a family here as I was already 34. I had recently had a miscarriage right before I moved (quite possibly caused by my clotting disorders) and I thought moving here would be a new start. I am now struggling with the fact that I’m not strong enough to carry a baby, not to mention the fact that I have been, and still remain, on pain killers for over a year. A big part of me has accepted what has happened to me, but on a day like today, when I’m not able to run to catch the bus and it drives right by me as I am waving, I feel inadequate. I know I shouldn’t feel that way, but I do.

I have tried really hard to take a deep breath and to remember to appreciate that I am getting better, no matter how slow it takes. Reossification of bone takes years, and no doctor will give me a definite answer when I ask them “when will I be the way I used to be”. I realize I am lucky that I am getting better and I feel blessed everyday.

What I really wish is that everybody would spend a day in someone else’s shoes once in a while. The world would be a kinder more understanding place.”

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5 thoughts on ““Existing in a World that Feels Like it’s Not Designed for You “

  1. Trifecta Health and Psychiatrist Dr. Fruitman offers Adult ADHD, Depression, Anxiety, Substance Abuse, Weight Management and Transcranial Magnetic Stimulation (TMS) for depression in New York City.

  2. Thank you for your this site Annie. My thoughts are with you.I have Mixed Connective Tissue Disease (Lupus SLE. Rheumatoid arthritis, dermatomyositis, Sjogrens and Raynaud's) I jokingly call it the "complete package" because humor helps. I too am blessed with a terrific husband who works days and is my caregiver all the rest of the time. I was just diagnosed with AVN both hips in December. As you know Christmas or anytime with with a walker is brutal. I am researching core decompression because my rheumatologist suggested that instead of total hip replacement (THP). I just wanted to know if you "had to do it again" would you have gone wih THP instead of decompression? Were you in a wheelchair at all? If so how long? I live in the boonies which means no buses for me. I wish you well.

    • MCTD is so hard to live with. When I was first diagnosed with Sjogren\’s Syndrome, I thought this is just a danged inconvenience. NOT. There are so many autoimmune diseases that you can develop and I think RA is a tough one. I\’ve been tested for that one and they all come up negative, But, not for SLE and Sjogren\’s

      We plug on, as that\’s all we CAN do

    • Yikes, I just saw this comment; please forgive, as the advice you were looking for to make your decision, is probably not needed now. As much as I do have ON in my hips, they aren’t being problematic (other than real stiff right now.).

      I did have ON in both knees and had a core decompression (CD) in my R knee. But eventually, I had to have a total knee replacement for that anyway. The CD USUALLY accomplishes pain and symptom control because it lets the gases and other toxic debris that have building up insides of the bone, escape.

      But, if STRUCTURAL problems are what is causing the pain, it does little to resolve this so that you MAY need a joint replacement anyway. But, a knee replacement is the easiest of all of them.

      Again, your doc knows your condition so he should be the one who advises you. I can provide answers based on ON, also. Annie

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