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Hello!
I am celebrating my one year of living with stage 4 breast cancer and 6 months of "no evidence of active disease" by raising funds to get a roller walker/wheelchair combo that will enable me to enjoy the life I have left more fully.
I have extensive mets to my spine, ribs, pelvis, femurs, and arms. I have 3 collapsed vertebrae that cause a lot of pain (even on 24-hour pain meds and a back brace/steel-boned corset). My pelvis has healed enough that I can now sit comfortably upright on a well-padded surface.
In 2024, I spent $9,542 out of pocket on medical bills, equipment, and end-of-life documents. That's my portion, even after all my excellent health insurance and benefits from work. We were gifted a vacation, and my other travels were for work/ paid for by work.
I have spent quite a lot of time trying to get my insurance to pay for an electric chair for me, but they will not, as I am mobile in my home. There are thousands of fundraisers here for people raising money for the mobility equipment they need, as health insurance considers it "unnecessary." My health insurance will pay for a $200-300 lightweight manual wheelchair, but that will not help me be as mobile as I'd like to be.
Areas that are difficult for me:
- standing for any amount of time. I use a utility ladder/stool at home to sit on to cook. When I'm out and about, I often carry a stool that I open up to sit on- it's not comfortable, but it's less painful than standing (even in airports waiting for my chair service; so, it's hard to carry around the extra equipment). If I'm out walking with Eden and she wants to pause and talk, I am in pain (and sometimes cranky). I cannot walk around a museum because it's not just walking- it's walking and standing. Some museums offer wheelchairs if you are there early, but it's hard to know if there will be one for sure and Bob would have to push me. If I'm standing in line for communion, I'm in pain. If I'm standing in line at a store, I'm in pain. It would be great to bring something lightweight I can bring- pull out of my car myself and sit in as needed and otherwise push around to get much needed exercise.
- not having an obvious mobility device where people are rude to me and bump into me. I bring a small, collapsible, reclining lawn chair to track events or when I have to line up for the senior night for football, for example, and people, I guess, think I'm rude for sitting in a reclining lawn chair and knock into my chair over and over again. If I had a clearly visible mobility device," I don't think people would knock into me, but they would show some kindness. I've had TSA agents at airports yell at me for not lifting my own luggage or my traveling companion's luggage while I was waiting for an airport wheelchair. They refused to bring the wheelchair to me, and I was stuck, not being able to move the luggage or leave the luggage.
- my work pays for an electric wheelchair for scientific meetings at convention halls where I can't walk for 8 miles a day (and stand), but then I get stuck in a chair, get no exercise, and get very stiff and achy. I would like a chair that I can push when I can and get exercise, sit when I need to, and when I'm exhausted- then use the electric components. The logistics of a traditional, fully electric, heavy wheelchair is difficult and not something I can travel with. I would need a special car to fit one of those full-sized electric chairs. Even at scientific meetings, I often have to leave the chair at the convention center (because I can't transport it from the convention center to the hotel) and then use alternate transport to meet people for dinner at restaurants. In one funny situation, a co-worker had to push my 300 lb wheelchair out of the dirt where the sidewalk was under construction. These ones you can rent are super heavy. While Bob could push me around in a manual chair when we are home, he doesn't travel with me for work trips.
- I aim to be onsite at work once a month- I'm not sure how to do this yet. So far, I have a wheeled suitcase for my computer as I can't carry anything. I can walk, but then, I can't stand. With my handicap permit, I can drive to either campus and then use this lightweight roller/walker wheelchair as needed inside the hospital.
- wheelchair services at airports are spotty and unreliable- I often use wheelchair services at airports, but they are not always available. Or, you have to wait for 45 minutes at security before they are available. If I skip it, then I'm in the situation of using my little stool to sit in line. If I had my own chair, I doubt airport security would expect me to lift my luggage, etc., and I would get help even if I don't have the wheelchair service. Again- it's an issue not to have your own device that marks that you could use help and kindness.
- Manual wheelchairs are pretty exhausting for your arms, especially when you have fatigue problems. So, it's not independence- you rely on someone pushing you.
I'd like a single roller walker electric chair that is durable, well-constructed, stable, comfortable on rough ground, and will last for the many years I plan on living well with this disease! I can toss this in my car and bring it with me wherever I go.