Well, this last week, I added yet another shoe style to my line-up of clip-in cycle shoes. Let’s go back to the beginning so I have proper time to rant, mostly about medical world absurdities. When I started off riding my trike, I threw on my Shimano spd-sl pedals and was cranking out the miles with my Diadora road shoes, left over from my upright biking days. That lasted me for about 500 miles before I developed a pretty serious case of insertional achilles and was forced to take a break. Now, I don’t think this was directly attributed to spinning on the new recumbent trike, but a combination of that, being more active again after my year of back surgery recovery, and going on a baclofen trial, to see if it would beneficially cut down the spasticity in my legs while walking.
The baclofen didn’t sort out. I think that I’m one of those cases where I use the spasticity to my advantage in absence of muscle tone, and when on baclofen, I started noticing more foot dragging, and was generally feeling lethargic. At this time, I was still using the forearm crutches to get around 100% of the time. As you know, I was pretty reluctant to transition to a wheel chair, but the timing all worked out pretty well, being forced to rely on the wheels for our trip to Switzerland. Coming back from Switzerland (and a month of minimal walking with the forearm crutches), the insertional achilles tendonitis lump on the back of my left heel started to diminish, until I started trying to walk everywhere again, rather than roll.
And so happened the Primary Care Dr. appointment, who referred me to a podiatrist, who proved to be completely useless, so I went back to the Primary Care Dr. who submitted my referral to a orthopedic surgeon, specializing in foot issues. The surgeon was very nice, and I felt I was in much better care than the podiatrist. Imaging was done, ruling out any bone issues, and I was referred to a very capable Physical Therapist, specializing in the same foot/heel/etc. issues. Physical therapy involved a lot of stretching and some manual massage of the overly tight areas around my heel, then my introduction to Kinesiology Taping.
Progress wasn’t happening nearly as fast as I’d hoped, but still, I felt like we were making some progress on sorting out my heel. Kinesiology Tape is awesome, so awesome that I decided to try going for a long ride on the trike, leaving the KT tape on. Why not? Well, when you still have a large lump on the back of your heel, and go for a long ride, with slightly rough/sticky tape between that large lump and the back of your shoe, you get a nasty blister. I felt this on the ride, but kept going, and by the time I arrived home, the blister was confirmed and had worn itself off already. And so began the frustrated healing period of inactivity. Well, there should have been more inactivity, that was probably a contributor to the blister turning into a full depth wound, pressure ulcer even.
See, most ataxia’s do not come with just one thing to challenge life in a different way. Now, I’m not saying that I’m worse off than others, or have it better than some, truth is, everyone has their own bag of things, some better, some worse. Anyways, along with whatever I’ve got going on (You are now clear, to hold.), the circulation in my feet has been declining pretty rapidly over the last few years. I have Raynaud’s Syndrome, which, for me, essentially means poor circulation, and my fingers and feet are exceptionally sensitive to the cold, they will turn completely white if I’m not mindful of an even slightly cold situation. Over the last two years, this has caused extremely slow healing of any wound, as minor as a small scratch, on my feet, as well as chilblains on my toes, which I’ll get to.
The blister turned pressure ulcer was not improving after a couple weeks, which was a new situation for me. Back to the Primary Care Dr. office, that is not equipped to deal with wounds, for a bigger bandaid and referral to the wound care clinic. Well, as it turned out, the main Providence Wound Care Clinic was booked out at least a month, so I went to one of their much smaller operations, staffed by a nurse with more specialized wound training. Really nice guy, but things were just not working. Doing more research, I had a diabetic like ulcer on my heel, and you know what really helps accelerate healing for poor circulation wounds? Hyperbaric Chambers! Well, even though this has been clinically proven, there’s some medicare situation that says they won’t cover hyperbaric treatment of a non-healing wound unless you are either extremely old, have diabetes, or some sort of extremely restrictive list like that. Usually when medicare won’t sign off on something like this, it just means that your insurance will likely not pay for the treatment, but you can still get it done if you are able and willing to pay out of pocket. In this case, there are extremely few private clinics that offer hyperbaric chamber treatment, it’s something that exists in medical centers, which are forbidden to get you in a Hyperbaric chamber unless you fall under the extremely limited specification provided by medicare, even if you offer to pay 100% out of pocket.
Not making any progress with the nurse, and the main Providence Wound Care Clinic now being a couple months out from scheduling (seriously, this is a problem, how are you suppose to wait a couple months with a serious non-healing wound?), Portland Adventist Medical Center was able to get me into their wound care clinic within a couple weeks, and seemed more willing to explore possible ways to, on paper, get me into the hyperbaric chamber to help out the healing process. Well, turns out, they hit the same wall with the strict medicare stipulations, but they were able to get me setup with some better tools, including the Snap Wound Care System (think wound vac, only far more wearable/portable).
After what I think was a couple more months, the thing finally closed up and I graduated, although I still had some pretty tender skin at the site, and the swollen, protruding lump had not gone away. Completely restless after 5ish months of no pedaling, or swimming, I needed desperately to be active again. I put my crocs on, minus the heel strap, and was able to start slowly pedaling my trike on the trainer in the garage. Turns out, moving the feet like this really helps pump the blood more and I started seeing even more progress. The lump on my heel did not go away as quickly as I grew tired of the garage scenery, so I decided to take my first pair of bike shoes (don’t judge me for still having them, I’m not a border, despite what my wife may say), and cut the back of the heel out of them. It worked! I started pedaling outside again, gradually improving with every ride. However, as the pedaling started getting easier, I was going faster, and my feet were slipping out of the shoe entirely when I really ramped up the cadence, or climbed a hill. This was a problem.
Wanting more, I kept eyeing my nice, newer road shoes. Tried them one….nope, that still hurt my swollen heel. After a couple more foot slips, I had enough and went after my newer shoes with the knife, taking a much more conservative approach. I was able to cut a much smaller section out of the heel of my left (recovering) shoe, and kept the right shoe (that heel was doing fine) intact. Better! Those shoes kept me going for another 1000 miles before the swelling of my heel (I also discovered compression socks just after wound care, and have been a convert to #keepittight Procompression Socks) subsided enough for me to started wearing normal shoes again.
Enter my sidi road shoes, which moved me through another 1500 miles, until, about two months ago, both my pinky toes were gifted with chilblains, and I kept riding, producing blisters, and, they have not wanted to heal. After tending to the situation myself with no progress, I went back to my Primary Care Dr., who, (although very helpful, is not outfitted to treat really any sort of wound) got me another referral to wound care. Well, the Providence Wound Care Clinic is, once again, at least a month out with scheduling. so I had my Dr. write up the referral to the Portland Adventist Medical Center, who said they could get me scheduled only a week out. And, well, somehow, despite my couple phone calls of prompting, the referral has still not found it’s way from my Providence clinic, to the Adventist Health clinic. Really, are PPO’s even a thing any more? They say I have the freedom to use other providers (out of network), but really, when it comes down to it, stuff like this happens, nearly every time.
After a week of inactivity and feeling sorry for myself, I got back on the intarwebs and checked out biking sandals,thinking that I just might be able to ride again if my pinky toes were not covered. Last weekend I went and picked up a pair of these Shimano SH-SD66 SPD Cycling Sandals, and swapped back to my spd pedals. Trying the sandals on, the outer edges were still just a bit too far forward, covering up blister wounds on my pinky toes, but deciding to commit to the non-returnable cause (that would be a fun one to try and explain), I was able to cut a small part out of that section and make them work. Far from ideal, I’m anxious to heal up and get back to using my sidi road shoes, but I am officially back on the trike, pedaling again! I still don’t have a wound care clinic appointment, but between being able to pedal again, improving the circulation to my toes, and starting to use a ridiculously expensive collagen wound care product (Paracol), I’m getting some positive progress of healing, not fast enough of course, but it’s moving in the right direction. Must keep moving, especially with the rideATAXIA event coming up the end of this month!