Frostbite and it's Legacy; Funding a Livelihood

Hey everyone,

My name is Kim, and when I was 18 months old, I got 3rd degree frostbite on my hands and 1st degree frostbite on my feet. 3rd degree frostbite is defined as freezing of the tissue below the skin layer and in children can lead to growth defects because of stunted plate growth. My family says my hands were so swollen they looked like balloons, or blisters, and the nurses notes from that hospital stay indicates the doctors had suggested they amputate several (if not all) my fingers in case of deeper tissue damage. The severe frostbite limited my hands' ability to grow properly, as you can see from the pictures above. The disfigurement is the result of scar tissue wrapping around the fragile bone structures left after the trauma of frostbite. The x-rays I've had in the past show the bones in my pinky fingers to be just a little larger than pencil lead in a #2 pencil.

When I was 15 or 16, I began to experience some tingling, numbness, and slight pain in my hands during colder months, and a doctor told me it's likely I was developing arthritis, but since I was a minor and it wasn't rheumatoid, I was told there was nothing they could do for me until I was older. I went back to a doctor when I was 19, and was essentially told the same thing, that there was nothing they could do and to take ibuprofen as needed. Over the next 10 years, I went back to the doctors, had some x-rays, was told to take ibuprofen but to attribute all my issues to the frostbite. The pain, stiffness, tingling, and overall difficulty with regular activities (washing dishes, holding or grabbing objects, even pushing a shopping cart) became more evident and I was repeatedly told (and can be seen in over 15 years of medical records) that I should just take ibuprofen as needed.

In 2013, I found out I had severe tendonitis in both major tendons in my left arm, essentially tennis elbow and tendonitis in my thumb tendon on the same arm. It became increasingly difficult to do my job as a cashier, as the act of even handling groceries or counting back cash was giving me pain and intense tactile tingling, respectively. I had x-rays again in 2015 and was told if I didn't stop using my hand, the tendonitis would never heal, and the arthritis had progressed, but was given no treatment ("there's nothing we can do for tendonitis or this kind of arthritis") except more ibuprofen.

In 2020, I was seeing a doctor about the pain I was having in my feet and mentioned previous x-rays of my extremities, indicating to her it may be arthritis from the frostbite (it is.) She was looking at some x-rays from 2006 when she told me, "It very obviously shows here that you have bone spurs in both hands." This came as a complete shock, as the many other doctors and specialists (including two orthopedists) had never once commented on me having bone spurs. I asked what that meant, and she explained that bone spurs aren't something that go away. They only grow, and get worse, over time. I have them in the palm of my left hand, my middle finger on both hands, and she said you could see some forming in the palm of my right hand as well. She said the only treatment for bone spurs is surgery, but because they are in such a small area with so many tendons and nerves, it would be a risky surgery that may result in worse pain, or complete loss of function. I was told that if I could, "to deal with the pain as long as possible."

This year, I was rejected for disability and found out how difficult it is to even discuss disability with medical professionals, as many of them won't even look at you if you have a permanent disability (only short-term disability.) I'm only 35, but the pain I experience in every day tasks has become overwhelming. I can barely hold a pan to wash it, or carry a bag of groceries from the car to the house, or any number of regular activities; holding a book, folding clothes, opening a door, even my hairbrush has to have a thinner handle and be lighter weight.

I'm currently trying to get in to see another orthopedist, now that I understand and have been shown I have bone spurs, but specialists are incredibly expensive. Getting on disability is my best next move, but getting on disability requires me to see at least one (but very likely more) specialists to give me a thorough medical evaluation that I can send in with my disability application. I was in a situation worse than I understood because it was always attributed to "the frostbite" when doctors weren't looking any deeper at my situation, and employers haven't been the most understanding (since not having a disability claim means I have no outside influence on the kind of work I'm restricted in.)

I would just like the opportunity to seek out the kind of medical help I need in order to file my disability claim, and hopefully get it approved (after 3 denials) after getting the evaluations I need, or even finding real treatment outside of hand surgery. I know this was a lot to get through, but I appreciate you taking time out of your day to look into my life a little bit, and if you can spare a dollar, that's a dollar closer to any possible treatment I could have. Thank you all so much <3