Even though I’ve been in a wheelchair, I’ve pretty much been pretending things were fine, just different. But that changed today when I picked up my new custom articulated AFO’s. Reality hit me like a ton of bricks.
They’re enormous. Well, they have to be, because I’m big and my legs are very wide. To make them, each leg was cast with fiberglass that was cut off and used to make a mold so the form was an exact fit, with some extra allowance for swelling. Today they were fitted to my leg, and the bottom part that goes completely under the toes was trimmed down; some of the side sections were also trimmed.
The sides of the AFO wrap around my leg instead of just having a small strip up the back with a wide but not that wide section at the top attached with Velcro. That’s the part that kept coming apart with Velcro falling to the ankle. The new AFO has Velcro around the calf but the distance is smaller and it’s riveted to the plastic so it should stay put. There’s another Velcro strip across the ankle to hold it in place. Instead of being one solid piece (the way the old one was, and the way a boot is), there’s one piece up the leg and another across the foot, attached with hinges. This will allow the ankle to bend. Well, the left one bends a little; the right one is still frozen but we’re hoping that will change.
I have no idea how I’m actually going to get these things on my legs myself, or how I’m going to get them into the shoes. I know it will work because I wore them home today, but the reality of it is something else. Of course, I had the other AFO’s for six months and was never able to put them on in shoes either. We’re hoping the hinge/articulation part will make a difference, but it’s going to take time.
I hate that it’s so damned hard to just put on my shoes. And that they are so ugly.
I loved to go barefoot in my house and to wear my beloved Birkenstock thong sandals year round. My toes don’t get cold, the arch is supported, and my feet can breathe. They are very wide, too wide to easily fit in local shoe stores, so I’ve bought shoes online for years. I had a good pair of New Balance athletic shoes in a men’s 8.5 4E that I wore to the gym, with soft flexible fabric that accommodated the occasionally swollen feet.
Alas, those days are no more. No more bare feet, no more Birkenstocks. No more cute shoes. Just expensive orthopedic shoes for diabetics with padded ankles, soft fabric uppers, and velcro straps. They’re ugly and I feel like an old lady wearing them. I’m too young to need old lady shoes! Except I’m not.
So I keep buying super wide shoes that should fit only to find that they actually don’t fit very well, or they fit one foot but not the other. That’s even without the AFO’s – and the new ones are going to be harder than the ones I have now, so I don’t want to spend pots more money buying shoes that should fit with AFO’s before they’re actually here, because if they don’t work, I still need to send them back. Which isn’t easy to do anyway when you don’t drive or have easy access to a car.
The OT spent her time with me today playing shoe store, pulling things out of the closet and then trying them out to see which ones I can get on by myself and how we make that happen. It wasn’t pretty and there was crying involved, but I finally did get two different ones on after about 15 min of trying for each one. The ones I have on now are black and ugly but they more or less fit, though they are two different sizes.
It could be worse; at least I have feet that I can cover with shoes. And if I have to, I can hire someone to put them on for me. In the scheme of things, shoes are a small thing. But I’m still waiting for insurance to approve wheelchair and AFO’s so something small becomes big because I can wrap my head around it even if I can’t always get the shoes on.
At last, at last, I went for a fitting for new custom AFO’s today, bringing with me my prescriptions from the foot doctor and his chart notes from our visit. The old ones are “off the shelf” rigid plastic things that I detest. The new ones will be rigid plastic things with a small hinge at the ankle to allow for articulation, an ankle velcro strap as well as the one around the calf (held on by brads, not Gorilla Glue that comes apart after two wearings), and padding around the foot that overlaps almost like a sock. She made a fiberglass cast of the legs to use for a custom fit. I’m not at all sure how this is going to fit into a shoe but the orthotist promised that it would work. It will take about a month to get the new AFO’s made and I go back for a fitting in early March.
One big concern here is the cost, but obviously I will pay whatever I need to pay to get these; the original AFO’s don’t fit at all, and I can’t walk safely without them. Medicare will pay for one set every 5 years. We don’t know if the coding used for the “off the shelf” original set is the same that they use for this custom set. If it’s different, then Medicare will pay for them. If not, then I will get a bill for $1800 each, less 40%. That’s a nice savings but it’s still pretty darn pricey. Good thing I’m not planning any vacations anytime soon. Also it explains my stress levels and chocolate cravings.
I’m HOPING that when the new AFO’s get here, I’ll be able to put them on myself, but that’s what I thought before and it didn’t happen. On the other hand, you may remember that months ago I bought a weird device that was touted as helping you put your shoes on with AFO’s. It didn’t work because my set didn’t have velcro around the ankles, which seemed to be what made it possible. The new set will have that and I’m hoping that means my nifty device will work and let me put them on by myself.
What I really need is someone to put my shoes and AFO’s on for me and watch me walk in the hallway, following me with the wheelchair in case I need to rest (which I usually do). I’m not going to fall down, but I can’t go very far without a rest. And then I’d like the AFO’s to come off and just the shoes to go back on so I can go about the rest of my day with the wheelchair. At some point I’ll be able to do more walking and can keep the AFO’s on longer, but I’m not there. I’m not exactly sure where how I go about finding someone to do this for me most days, but have a plan to try.
Reading between the lines of my conversation with the orthotist today, I think an AFO will be part of my life for a long time, at least for the right foot which is still inflexible and feels spongey. I’m hoping the left one will spring back to where it was before, but there are no guarantees about that either. I wish I better understood what the surgeon thinks is likely as the final outcome of the laminectomy; all I do know is that it will take at least 12 months or more, and that I probably won’t get all my function back. Nerves heal very slowly and there will be some permanent damage from severely compressed nerves.
I just don’t know what it will look like in a year and that’s hard because I can’t plan and I like to plan. Do I want to walk instead of ride around in a chair? Of course. Where I am now is a far cry from where I was five months ago and in many ways, if this is where I finally end up, I can live with it because I’ll know those are the limits. I wasn’t sure that I’d be able to come home at all, to live independently, or care for my kitties, and I can do all of that. Is it enough? No. But I’m really worn down by having to fight so hard to figure out what I need and how to get it. And I’m tired, and I hurt today. Please send hugs.
OT is coming tomorrow afternoon and we’ll practice me giving myself a shower. Words can’t express how happy this makes me!
PT is coming tomorrow morning. At least they’re not overlapping visits. There’s something wrong with my right big toe, very painful, maybe corns?, so it should be fun walking. Maybe Harry can take a look and tell me what to do for it. It’s unhappy most of the time anyway with nerves waking up, what’s a little more owie-ness? Except that would be bad.
Foot doctor’s office is sending me an Rx for a left foot AFO to go with my right one. PT tells me these run about $1800 each. So far this is a very expensive year.
Brickstreet Pharmacy will take back the unuseable blue wheelchair and give me a refund, but they don’t have any chairs that I need in stock and don’t seem interested in finding me one. So tomorrow I start making phone calls to other places. At least I know very precisely what it is I’m looking for now. I’m hoping that some of the places that may not usually have them would order for me if I give them exact specs. Apparently the wheelchair people don’t want to take orders directly from the folks who actually need to use them.
I tried, I really did. But that pretty blue chair just wasn’t working for me. It felt a bit rickety and trying to stand up using the desk arms was not easy or pretty. I fell backwards into the chair again at least as often as I actually made it up. So I was relieved when physical therapy came on Tuesday, looked at it, and said it wasn’t the right chair for me. It’s not just my preference to have something different, it’s what I actually need, especially for standing. They offered to talk to the pharmacy on the phone if it would help.
I’m not sure what’s going to happen, to be honest. Right now I’m still using my borrowed therapy chair while I wait to hear back from the pharmacy. I have a borrowed chair and the blue chair that I bought, but what I *need* is a 20″ steel wheelchair with reversible desk arms and standard footrests – which is what the borrowed chair actually is. If they won’t accept a return, I might see if I could give the blue one to therapy and let me keep the borrowed one. Can’t work if I don’t ask, right?
My preference would be for them to take back the one I bought and get me a new chair that matches what I need. So we’re going for that first.
As for the AFO – it’s clear now that I really do need an AFO for my left foot as well as the one for the right. When PT had me walking around, even I could see that my right foot was stepping heel-toe but my left foot was touching down as toe-heel. I stopped using the left AFO when we couldn’t get the velcro to stay attached around the calf, with the approval of my then-therapist. But that won’t fly now. Maybe when the legs get stronger it will be different. But for now, I’m hoping the foot doctor who gave me the script for a new right AFO will write me another one for the left foot, too, without another visit. I just saw him last week and he looked at both of the feet and ankles at the time. I have a message in through the patient portal to check. I go to the orthotist to be measured for the AFO at the end of the month and it would be great to do both at the same time. Let’s hope!
Random Thoughts of a Disordered Mind 