While being in the Rehab hospital, I had a full schedule from the minute I could stand. Once the swelling went down enough to walk, my mornings began with 7 am vitals checks and meds from the nurses. With breakfast came my therapy schedule which varied daily. At least two sessions of occupational therapy and two of physical therapy. Sounds comprehensive and helpful, doesn’t it?
It ain’t necessarily so and It all goes back to that box that I didn’t fit into.
I realized quickly that all therapy regimens have lists of tasks to be completed by the patient and administered by the therapists. The bad thing is, they are created somewhat equal and I was an anomaly that was never going to be on those lists. While the therapists were used to working with post operative patients recovering from hip replacements, I was a different story. I know I’ve said it before but I cannot stress it enough. They were kind of perplexed as to how to approach my therapy so they did what they were trained to do. They went by the book… which in my case, didn’t work so well. Anything I was asked to do, I did or if I could not do it, I showed them why an amputee couldn’t do it. Sometimes they understood, sometimes they didn’t. When they didn’t, wee had a major conflict of wills.
It took a long time for me to convince them that my upper body strength was fine. Maybe I was a little weaker just from having surgery but overall, that part of me was still pretty strong. Occupational therapy…at least my understanding of it…is to train or re-train someone who has lost the capability to function in their jobs or to take care of their personal daily tasks. I needed to strengthen my bottom half to walk again. So imagine my surprise when my first session of OT was to push myself around in a manual wheelchair and find things on a scavenger list given to me by my therapist. It went something like this:
Find the red gym: check; how many weights in the blue gym: 8, check; find three computers in the main gym: check; how many microwaves in the kitchen: blah, blah, blah, check.
The list had me rolling myself all over the therapy area; back and forth for about 20 minutes. What this had to do with relearning to walk was a crock.
In the first place, I personally own an electric wheelchair because I have a badly arthritic left shoulder and using a manual chair KILLS the shoulder. So for 20 minutes, I put so much strain on that shoulder that I was in major pain by the end of the “hunt”. But that all important task-box got checked off on the therapist’s list and I had to ask for extra pain medication when I got back to my room. For my shoulder, not my hip.
My second OT session was baking blueberry muffins in the kitchen of the main therapy area. For that, I had to stand with limited movement in a very poorly arranged kitchen. I know things where spread out to make the patient move more but it was a very unrealistic kitchen setup that no one in their right mind would ever have. So what did I do? I collected everything all together on a baking sheet before making the stupid muffins to cut out any unnecessary movement and then put them together. It wasn’t what the therapist had in mind but again the concept of Occupational therapy just didn’t make sense to me. It took about 20 minutes before I completed my task. The therapist was duly impressed I could stand and move that long. I, on the other hand, wondered what baking muffins had to do with learning to walk stairs or ramps or loosening tight leg muscles since most of my time was spent just standing. During my other OT sessions, I folded laundry, assembled puzzles with pieces the size of your hand, played crazy 8’s with giant 8inch cards, picked tiny beads out of lumps of modeling clay, emptied containers of cups, plates, eating utensils and repacked them logically and sewed a pompom on a stocking cap. Yes…a damn yarn pompom. All while sitting in the damn wheelchair. Not walking. Never mind that I didn’t have surgery on my hands and that I input data for a living so my dexterity is at a pretty high level and totally intact.
See…that dumb box thing again.
Then, what I prayed wouldn’t happen, did happen. I stood too long and too soon before the swelling was completely gone and developed a huge blister on my right stump which put the kibosh on any therapy for two days. I was adamant that I knew how to take care of the blister and to my surprise …after I explained that blisters are somewhat of a normal occurrence for any amputee when swelling happens causing the legs to not fit properly and that I knew how to treat it, the docs and nurses let me take care of it as I have done many times before. Score one for me!
Once I could walk again, PT finally became more helpful. I did stairs, ramps and hall-walking, all with the aid of a walker because my muscles were pretty weak. Still, it was a damn sight better than sewing on Pompoms. I won’t say my time in rehab was wasted but with the exception of the last two or three days, it wasn’t very productive either. I was walking okay with a walker when I was cleared to be discharged to come home but I was extremely weak.
Funny sidebar…my last OT session was to rearrange the food pantry in their mock-up kitchen. Because, you know of course, that was going to be the very first thing I was going to do what I got home from the hospital. NOT!
I’m telling you, I felt like the queen of mindless tasks.
Upon returning home, I was assigned a home healthcare nurse and a home therapist. Between the time it took to schedule their visits and for them to actually meet with me here at the house, I exercised on my own. On the “evaluation visit” from the nurse, she determined I was doing so well she’d only come for a couple weeks to check vitals. The therapist came and evaluated me for a once a week visit. Before his second visit, I had an appointment with my family physician who promptly cleared me to drive because I had been off all pain meds since being home. And I drive with hand controls so there was no reason I could not drive myself to out-patient therapy. So the in home therapy was cancelled in favor of outpatient. That was about two weeks ago and to date, I still have had no therapy except what I am doing on my own here at home. The referral from the rehab doctor for the out-patient PT did not come through until last Friday. It took 5 calls to his office to get it and the earliest appointment I can get to actually get into seeing the physical therapist I worked with before the surgery is mid December.
Not good enough.
I found another therapist at another facility who might see me this week but I need to talk to her first and make sure she has some experience with double amputees. If not…then I fully intend to keep on doing my own therapy because my therapy is better than the wrong therapy.
As of today, I can walk very well with a cane and have for the last couple of days begun to walk without anything around the house. It’s not as good as it will be or as well as I have in the past before the hip problems but it’s pretty damn good. I’m not ready to return to work but I think I might be closer than I thought I would be at only 6 weeks from surgery. On that point I’m very happy.
And I did it because I refused to give up and wait until the system was ready for me. Yes, it helps tremendously that I’ve gone through much of this kind of stuff before. I can’t discount the importance of that at all. But in the grand scheme of things what it boils down to is this. Advocacy for yourself is the best thing you can do. It has to be that way. We all know ourselves better than anyone else can. It’s frustrating but also, very empowering.
…and the fact that I did make myself blueberry muffins as soon as I got home had absolutely NOTHING to do with OT. I just happen to love blueberry muffins.
Categories: bilateral BK amputees, Hip replacement, life
Thank you for continuing this series, JK! It is so inspiring to see someone confront adversity and win convincingly.
Hey JK. I’m with Bill. You are surely an inspiration to me. I am so glad that you decided to create this series of posts.
Man….I guess I was a TAD to optimistic about the ability of those in the system to learn/adapt/rise to the challenge of working with you as you heal. So sorry to hear that you are basically doing it all on your own. Grrrrrr.
This makes your sharing of this journey that much MORE important. Here’s hoping that when someone in a similar position comes searching online for info…they will find your lovely self and take courage from your words.
I find myself curious about what sort of exercises you are doing.
I have a set of exercises from my physio-therapist to help me strenthen the muscles around my right hip in order to…fend off a hip replacement for as long as possible.
Each morning, as I do my exercises, I think of you. I know it is nowhere NEAR the same, but … Know that I’m thinking of you and sending a wave of “you go girl!” with each leg lift.
Have a great week ~p
I find that last comment about blueberry muffins snort-inducing funny for some reason. 🙂 Maybe just because I love your brand of humor so much. If it had been me, I would have taken the mundane tasks with a lot less grace and a lot more get me the heck out of here. 🙂
I want to ask my husband who is an OT what he would have done as your therapist. He’s kind of known in his company for innovation and thinking outside the box, but even more for individualizing his patient’s care. I think you two would get along just fine!
Love your spirit. You need to get these blogs out to a wider audience!