Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I am going to be talking about my experiences with Osteoarthritis as an installment in the “My Diagnosis” series.
Let’s start out by talking about what osteoarthritis is. Osteoarthritis is the most common form of arthritis, affecting millions of people worldwide. It occurs when the protective cartilage that cushions the ends of the bones wears down over time. Eventually, if the cartilage wears down completely, bone will rub on bone. Osteoarthritis has often been referred to as a wear and tear disease. But besides the breakdown of cartilage, osteoarthritis affects the entire joint. It causes changes in the bone and deterioration of the connective tissues that hold the joint together and attach muscle to bone. It also causes inflammation of the joint lining. Bone spurs can form around the joint.
For those of us with hEDS, we are at a higher risk for osteoarthritis because our joints are moving around way more then they are supposed to and in ways that they are not supposed to be moving. Every time a joint subluxes or dislocates it is moving in a way that it wasn’t designed for and it is increasing the risk for osteoarthritis. This is why it is so important for us to be taking good care of our joints and making sure they stay in their proper alignment even if it isn’t causing us any pain at the time. Because osteoarthritis is a disease caused by cumulative damage to the joint that happens over a long period of time.
My feet are where the osteoarthritis is the worst. The cartilage between my tarsals, metatarsals and phalanges is gone. All those little bones are now rubbing up against each other. This is causing those little bones to break up and degrade. I have numerous bone spurs in my feet because of this damage.
The ligaments in my feet are also degrading and they are loosing their ability to hold the bones in the proper place.
There are a bunch of ligaments in our feet. The majority of the foot’s stability is achieved with ligaments that hold all those little bones tightly together. As my ligaments degrade, the bones in my feet become more mobile and they grate on each other even more which leads to further damage to the bone. What this all sums up to is that my feet are disintegrating. In time these structures will have fallen apart enough that they can no longer bear weight. My prognosis is that I will most likely be wheel chair bound in five years.
There are no surgeries to correct the damage that is happening to my feet. The bones and ligaments are all made from the connective tissue that my body is not able to properly create or maintain. This is the price that I am paying for having a career that has me on my feet for 12 or more hours a day. It is the reason that I will soon no longer be able to tolerate working as a bedside nurse. And because of the emotional price that nursing costs.
Of all the diagnoses that I have received over the years, it was this one that was the most difficult for me to receive. There has been a long and difficult grieving process wrapped up in knowing that I am loosing my ability to walk. No, loosing my ability to walk is not the worst thing that could happen to me. And no, being wheel chair bound does not mean that my life will end. But it does mean that I need to reconsider everything that I thought I was going to be doing with my life. I had planned on working as a bed side nurse until I was ready to retire.
There are nurses out there that are working as bedside nurses while they are wheel chair bound. They are amazing people who are willing to fight for disability rights in a way that I no longer have the spoons for. I do not have it in me to fight to stay at the bedside. I have spent my entire career fighting to keep my place in the work force despite having chronic illnesses. I think it is absolute insanity that they are not looking to keep every nurse that they have. But the ableism is real and its strong in our culture. And I am tired. Deep down in my soul, I am tired.
It has never mattered that I am very good at my job. I have always had to fight to keep that job because I have chronic illnesses. No one wants to give a nurse a day off for anything, but least of all for a sick day or a doctor’s appointment. Getting accommodations as a nurse is near impossible. The irony of that has always been painful. As a nurse, it has always been my job to help people figure out how to maintain their functioning despite their illnesses. Yet, as a nurse, I have never been granted work accommodations easily.
So, because of the current culture in our country’s work settings and because of my feet slowly turning into dust, I am now standing at a cross roads in my life that has been very difficult for me. I am currently working as a travel nurse with the plan to pay off my college debt in hopes that we can move into the next stage of things without that debt. I am not sure what will be next. There have been many different options that I’ve considered, but I haven’t settled on anything in particular. I have been mostly focused on trying to get through this phase of things.
While I am struggling with my grief over leaving bedside nursing, I have also had to come face to face with my own internalized ableism. It has been a real challenge for me to accept that I will not be able to walk here soon. All of these complex feelings come down to having been taught that I will somehow have less value once I can no longer walk. It is a terrible thing to realize that you have been taught that a human only holds value if they are able bodied. My rational brain knows that this internal ableism is a lie, but that doesn’t keep the narrative from playing in my mind. It’s pretty awful.
Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!