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

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

  1. Your are a very brave & strong person and no matter how down you get, I know you will come through it wiser & stronger mentally if not physically.

  2. It is definitely difficult. I knew even before my surgeries that just functioning and doing “normal things” would become a challenge, but using a wheelchair and a walker revealed the world in a whole new light. You really have to get “creative” going places. And even though I am back on my feet now, I’m always checking out spaces and noticing how inaccessible they are. While using an aide, it was awkward (to say the least), but in hindsight – I’m glad that I was able to experience that because perception is such a powerful thing! I feel like a stronger person because of it.

    You shouldn’t feel inadequate … I’m sure you know that already. Many people could not do what do you. And they don’t know what you know. Try to stay positive and remember that while the majority of the world doesn’t understand your frustrations, so many others know exactly what you are going through.

  3. I know exactly how you feel, I found out I had AVN when I was 35 too, March of 2011 is when I finally found out, after about 10 years of multiple Dr’s telling me it was all in my head. I got so frustrated I gave up and started to accept their “diagnosis” until one medication they put me on for the “it’s all in your head disease” gave me kidney stones which is ultimately how I found out I had the disease. It was embarrassing being this young and needing a cane (I should have been on crutches but I was too proud). Life lost all it’s enjoyment and for the last 3 months till I was diagnosed I was bedridden. Both hips collapsed at roughly the same time and for 2.5 years I could barely get around. Once I found out what it was the time from diagnosis to surgery was super quick.I was already at stage 4 by the time it was found so there was no hope in saving either hip. I found your blog because I think like you I am also idiopathic so I am worried it’ll spread and was searching on research done for this.
    If there’s one thing I’ve learned through all of this it’s that there’s no point in getting mad or upset about it, neither will change anything. Just have to accept it and carry on as best as we can. I lucked out though, had both hips replaced in April and was told I wouldn’t be able to ride a bike for at least 1-2 years after surgery…… I was back on it not even 2 months after.

    Hope you are well. Ps- I’m from Philadelphia and Rothman wouldn’t even see me as a patient. I ended up going to Pennsylvania Orthopedic Center in Paoli, PA. Dr. Garino actually sought me out to try and help. I had a friend who went to school with a fellow Dr in his office that told him about me and asked what I could do. He called me the next day to have me come see him.

    • Mike,
      I can’t believe how long it took for doctors to properly diagnose you. The sad thing is I hear this from AVN sufferers all the time. Once again the pure lack of knowledge and education in the orthopaedic community ends up hurting the patient. It’s terrible that you were at stage 4 before anyone knew what was wrong with you. It’s so inappropriate that they tried to tell you it was in your head. When I went to the Rothman institute I was so scared and I didn’t know much about my disease at the time. I didn’t know if I would ever walk again. The doctor told me I needed to go to a psychologist because I cried when he told me I was wasting his time. I don’t think I will ever forget that happening to me.

      It’s great that you have had your hips replaced now and can move forward. If you can find no reason as to why you developed AVN in the first place, I would highly recommend getting your blood tested for clotting disorders. It’s good to know what is going on in your body. You can always contact Dr. Glueck or see if you can find a hematologist who is willing to work with Dr. Glueck so you can have the blood workup done that I posted on here. I think it’s imperative, especially with this disease, to know why you developed it in the first place so that you can prevent it from happening in another joint. Thank you for checking out my site. Good luck. Feel free to write on here if you need to vent, or chat or have any questions.

      • I just found out yesterday that my shoulder is now collapsing. I don’t know if I can deal with this, so soon after having my hips replaced. This is all a bit much to handle.

      • I’m so sorry Mike. What did the doctor say the next step is? Have you ever found out why you got AVN in the first place? How long did you have pain before you were diagnosed with AVN in your shoulder? It sucks, there is no other way of putting it. It sucks and it’s not fair. Trust me I know it’s really hard to keep staying positive.
        This is one way to look at it, you were on a bike sooner than you thought you would be after you had your hips replaced, you obviously have a lot of determination. You have to hold on to that and let it help you deal with what is happening now.
        I don’t know if you ever had a chance to be tested for different coagulation disorders, but I definitely think you have nothing to lose by doing it now if you haven’t already. Keep me posted!

  4. Cassandra, I was able to identify with all that you said, “There’s a grief that can’t be spoken, There’s a pain goes on and on…” built the clotting disorders that gave rise to APS or created an inability to maintain a pregnancy is heartbreaking. No word that I can say can make that better; how do I know? Others have tried ‘that one’ on me. It doesn’t work, it will never work.

    Lupus caused one clotting disorder, the other was inherited (thanks folks). My heart goes out to you knowing the struggle you’re up against, but I also know the mettle you’re putting behind your ‘fight.’ You’re organized and have such a positive attitude; I hope you go far. Now, off to re-blog an article.

    Annie

  5. Reblogged this on LUPUS CHRONICLES and commented:
    Sometimes, to borrow a line from the movie, “Forrest Gump” “there just don’t seem to be enough rocks.” Like throwing spears at the demons that lupus brings, that all chronic illness brings, this article by a fellow blogger about osteonecrosis to herself to counter the indecencies that chronic illness causes/in this case osteonecrosis, causes.

  6. Pingback: “Existing in a World that Feels Like it’s Not Designed for You “ – LUPUS GURU

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