Meet my friend Betsey. She is an amazing soul. Unfortunately, struggling to get an electric wheelchair has left her isolated and alone and made her life extremely difficult. She has been getting the runaround from doctors, referrals, and insurance. I’m hoping if we raise enough money, we can help get her a chair and get her back to enjoying life within its limitations. Here is her story:

In 1991, at the age of 27, I was diagnosed with a severe case of osteoarthritis, which made everyday tasks very painful and difficult. The condition progressed quickly. In a matter of months, I went from being an athlete to being in constant pain and walking with a severe limp. I underwent multiple joint replacement surgeries—my right hip in 1995, both knees in 1996, and my left hip in 1998. I was initially on a path to recovery, but I contracted a staph infection in my right knee, which is the last thing anybody wants in a prosthetic joint. Resistant to heavy-duty antibiotics, it was extremely difficult to eradicate. Between 1998 and 2005, I had a series of 55 surgeries to get rid of it. My right knee was replaced three more times. I spent literally years on crutches, but it always came back.

In early 2005, my case was transferred to UCSF. Upon arrival, I underwent a grueling, 14-hour surgery. The infection had spread through my upper leg and hip. With each joint replacement, original bone is lost. I had almost none of mine left, but surgeons were able to replace my femur with a metal rod and place a greatly modified replacement hip joint in. After a subsequent surgery to close the wound, my leg was shortened by seven inches. This left me absolutely devastated. There was absolutely no returning whole from that.

I spent the next few years in physical therapy, working hard learning to walk with a seven-inch lift on my shoe, which was no small feat. But out in public, I was embarrassed, as it looked like I was wearing a clown shoe. I had to deal with all the whispers and outright laughter, and it just never got easy.

In 2007, after several more unsuccessful eradication surgeries, I finally accepted my leg was no longer my friend. I made the decision to have it amputated. My recovery was swift, and I got a prosthetic leg decorated with a vibrant mandala design. My quality of life improved dramatically.

I had grown accustomed to people avoiding contact with me, as they do with visibly disabled people. But that leg was a conversation piece that brought strangers out of the woodwork to ask about or comment on it. I had regained some of the self-esteem that I had lost over these years of disability. I even wore mini-skirts!

In 2012, after gaining some weight, I got a new, less comfortable prosthetic leg. On Thanksgiving 2011, I chose to be comfortable for dinner out with my family, so I left the prosthetic behind and just used my crutches. I fell, breaking my pelvis. It never healed properly, and eventually, the prosthetic hip on my left side (my good side) dislocated itself. After five hip replacement attempts were all unsuccessful, I had to admit defeat. So, I reluctantly became a manual wheelchair user.

By 2021, arthritis had riddled my hands, elbows, and shoulders. My rheumatologist begged me to switch to a power wheelchair to alleviate the stress on those joints. I resisted at first, feeling I wasn't that disabled. But eventually, I had no choice. I surrendered to the pressure and got myself a used power wheelchair.

Knowing that chair wouldn’t last forever, I initiated the process to get Medicare/Medi-Cal to get me a new power chair on July 1, 2024. Sure enough, on November 8, 2024, my power chair up and died. It was then I first discovered the nightmare surrounding this process.

It has been plagued with issues, including lost or misplaced documents, lack of communication, insurance disenrollment, red tape, endless delays, and a general state of disarray at the organizations involved. Because my conditions only allow me to propel myself a few yards in a manual wheelchair, I have been isolated inside my apartment ever since. This prolonged ordeal has left me extremely frustrated, dependent, and just utterly defeated.

My doctor and I have done everything they have asked of us. Yet this process has stalled repeatedly. I’ve met with doctors, I’ve been evaluated by physical and occupational therapists, and I’ve met with an assistive device technologist who showed me the chair he was ordering for me, while telling me we were 6-8 weeks from delivery. Last week, my doctor informed me they are requesting yet another face-to-face office visit and new orders from her because the orders we had been working with are now outdated. They have delayed so much that now my doctor and I are back at square one. This is making me CRAZY!

This has been the most exasperating and agonizing misadventure EVER! The level of incompetence and ridiculous excuses I have encountered is overwhelming, and I am now asking for help to restore my quality of life.