My appointment with my orthopedic surgeon went well and the x-rays looked good. The prosthesis is in place and we believe the soft tissue is forming around the hip after the dislocation last year. Of course, you don’t see soft tissue in an x-ray but the fact that the hip has remained in place is a good sign.
I explained that my leg and hip are “achy” and I’ve been having a hard time getting comfortable at night and have difficulty sleeping. Some of this is due from being away from physical therapy and some of this is simply from the trauma that this leg has been through.
My surgeon is always impressed by the progress I make but I always have questions. Should I be further along in my progress? Should I be able to bend my knee more? Why can’t I get these compression garments on? Should I, can I , when, why, etc., a million questions with no definitive answers.
Trust me, I know how lucky I was to survive Ewing’s Sarcoma bone cancer and how fortunate I am that we were able to save my leg and foot. I.get.it. But that doesn’t mean this process isn’t frustrating.
I need to be able to get out of this orthopedic boot and into shoes again but in order to do this, I need to find compression garments that will control the lymphedema and not irritate the area on my foot where it is most vulnerable.
Dealing with lymphedema and trying to find compression garments that I can actually put on by myself is extremely frustrating. Frustrating because I can’t reach far enough to put on any garments and I struggle using various tools. I’m not actually sure how a person with “normal” flexion can get compression garments on because these garments need to be so tight in order to do their job that it makes it hard to get them on.
The original compression garment we ordered does not work as it is too tight and we could not find a way for me to get it on by myself. Now we are trying to use a hybrid garment that has more compression in the foot area and a little less throughout the rest of the garment in conjunction with a leg wrap garment. Because I have swelling from my knee down, I need compression throughout this area.
This new hybrid garment is a tad easier as it has more compression in the foot area and less throughout the leg area, making it a little more flexible. While I can’t use the original device to get the garment on which would control the friction in the foot area, I can use another device to get this garment on, we just aren’t sure how it will, if at all, impact the area due to friction. I still struggle but I did manage to do it! (It needed to be adjusted a little to cover the entire foot which I can’t bend to do but I believe I can work on it to perfect it!)
The problem is the leg wrap. It is an open garment that you wrap both sides to create compression from below the knee to the ankle. I haven’t figured out how to manage this as the OT tools I use can’t hold the garment in place while I try to bring the garment around and the OT tools slip off the garment as well. Originally I thought I could put “rings” around each wrap like I have on my boot so the OT tool can hook on them, making it easier to bring the garment around the leg (there are 5 wraps to cover) but then the rings would get caught in between each layer.
Another issue is what to do each night after taking these garments off to control the swelling. Do we wrap the leg as we have been doing? In theory it sounds fine, but the reality is that I can’t get the wraps on by myself either because I can’t reach. So the question is, how do I then get the leg wrapped? Magic fairy?
Sometimes it feels like I am going around in circles trying to find a solution to get out of this boot and control the lymphedema.
My surgeon said we try everything possible as it is really trial and error to see what works. I can appreciate this but it is frustrating!
I wish there was someone who can say, I had the same problem and here is the solution! In the meantime, I will continue to try everything and anything with the hope of something that will actual work.
Cancer certainly wreaks havoc and leaves behind reminders of how powerful the damage can be, but I always remind myself that I survived and have lived 34 years on this damaged leg.
I need to keep looking forward because that’s where I am going.
When you are reading this I hope you remember, whatever your obstacle, keep focusing on your goal. Some days the struggle is real but keep your eye on the prize.
Until next time, be well and go out and do a random act of kindness.