Recovery Year comes to an end

Discovering that my legs didn’t work was a game changer. It’s never something you expect or can plan for. I’ve worked hard both in rehab and out-patient PT to get back as much as I could. When I left residential rehab in October 2021, I gave myself through December 2022 to see how much mobility I could get back and how many real-life things I could do myself. I called it my “Recovery Year” even though it was actually longer than that.

I wrote out what happened so I would remember facts and emotions, and be reminded of progress through the hardest thing I’ve ever faced. I’ll keep doing that, but I’m going to widen my world to include more than just thinking about therapy and physical tasks. Because that gets really boring.

Some tasks are hard; others aren’t easy but I’ve figured out how to do them. And others that seemed impossible in the beginning are now parts of my normal life. There’s progress everywhere when I remember to look and to be grateful – and to continue that progress going forward.

First, though, I copied all of these “Therapy Notes” blog posts into 2 books, one for my intensive period (August-December 2021) and the second covering all of 2022. It feels productive and marks a turning point going into 2023. The books are only for me, something tangible to use for reference and remembrance.

This “Recovery Year” has been another game changer. Now it’s time to close this chapter and move on to whatever comes next.

One Year Out of Rehab

I’ve been out of residential rehab for a year this week and am so happy to be home, living my life as independently as I can (which is most things). I’ve learned how to adapt to things that seemed impossible when I first got home, and others may be time consuming but very doable. They seem like small things – taking a shower, changing the sheets, putting on AFO’s, making cookies – but each was a major challenge. But I live here independently with my floofy girls and do more than just worry about whether I can stand. I have two more weeks of PT working on my inflammed shoulder and then I’m on my own again. I’m so ready.

Walking:

For the last 2 weeks, I’ve been walking with a rollator in physical therapy. Right now it lives up in PT so I’m using my regular walker at home and to my surprise, I’m finding the rollator to be easier to use. When I tried using it a year ago before I was discharged from rehab, it was a disaster. My legs are much stronger now and my rollator is appropriately sized, so I feel stable. I also know how to use the brakes to keep the rollator from flying away from my feet. I’m easily walking about 150 feet using it which may not sound like much but it means I know I can handle it in the apartment with shorter distances and I feel confident about bringing it home to use on my own. If I need to, I can hire someone to walk with me for 30 min a day when I first start using it here.

Sleep:

My sleep has finally turned around. I’m making myself stay up longer in the evening, which seems to have eliminated my “get up in the middle of the night to pee” problem. I use my nifty flexible “bed ladder” attached to the bed frame to roll over so I can sleep on my side, which eases lower back pain. I usually find myself on my back by morning, but have figured out how to set the adjustable Sleep Number bed to be comfortable and supportive. And best of all, my CPAP problems were fixed by adjustments made by my DME provider so I’m getting plenty of air. After months of short nights mostly spent in the chair, I’m now getting 8 hours of sleep and have plenty of energy during the day.

Blood Clot:

Two ultrasounds in early July found a blood clot in my right thigh. It’s a chronic thrombus or DVT which means it’s been there a while and has hardened and attached itself to the femoral vein from above the knee almost to the groin. Yup, it’s big. They did the ultrasound in the first place because my leg and foot were swollen and super tight. The doctor explained that, because of the clot, the blood couldn’t get up the leg through the narrowed vein. What made it swollen wasn’t water retention, it was blood. They put me on blood thinners to dissolve the clot, though it could take 6 months for it to go away completely.

Three months later, things have improved. Two follow-up ultrasounds show the clot is still there, but my foot looks normal in the morning and only slightly swollen at the end of the day. Foot and leg are more swollen if I have to spend lots of time in the wheelchair with my legs down, but even then, the leg “gives” more than it did three months ago and feels more normal. I elevate my legs in my lift chair when I’m home and also raise up the lower part of the bed at night, which all helps. Elevating didn’t really do much before and I’m not sure how much it’s necessary now, but I’m happy to have more normal legs.

Hopefully the whole clot will be gone by the end of the year. I’m thinking I’ll probably need to stay on the blood thinner to be sure another clot doesn’t develop, but we’ll cross that bridge when we get there.

Image credit: Photo 155001899 / Progress © Designer491 | Dreamstime.com

What the Doctor Said After Thirteen Months

Today was my final visit with my spine surgeon, thirteen months after my lumbar laminectomy last summer. I did my research and had my questions ready on the phone so I wouldn’t forget to ask anything important.

Biggest question – Is what I have now what I’m going to get post-op? Answer: Probably yes. He does not discount the power of prayer and continued hard physical work to see additional progress, but most of the improvement comes in the first year. I have good leg strength but my ankle has almost no improvement and there continues to be numbness, tingling, spasms, and pressure. That probably will not go away. He is very pleased with how much I progressed, which tells me that he may not have thought I could come this far, so I’m not complaining.

Will the stenosis come back? Answer: Not before 15-20 years if at all. My spine was very well cleaned out of compression and he doesn’t think it will be a problem. I do have some compression issues at other points (specifically S3) but have NO plans for any additional surgery, though I’ll monitor things to see if they change.

Should I plan to continue PT for the long term? Answer: No. It does the most good in the first 6-8 months, though help for specific functions (such as using the rollator) would warrant additional sessions. I must continue leg and arm exercises on my own, which I already figured out.

What about using a power chair? Answer: As long as I don’t overuse it, it should be helpful. But I cannot stop walking or I will lose the ability to do it. I should aim to use a rollator and manual wheelchair in my apartment, walk in the hallway for some longer distance practice, and reserve the power chair for longer distances to keep from straining and inflamming my arm and shoulder.

What kind of doctor should I be seeing for continued care? Answer: A physical medicine and rehabilitation specialist, usually found associated with pain management practices. But for the most part, I probably will not need to be managed. If my primary care or pain management doctors can’t figure out what I need, I could go to a specialist in my current pain management practice. Mostly I’m going now to manage SI joint pain with medication since I can’t have an injection due to blood thinners for the blood clot.

I like my surgeon and would recommend him, though I hope no one I know needs a spine surgeon anytime soon. I’m also glad to have graduated from his care. For now, I’m using my rented wheelchair until my Phoebe chair gets evaluated and fixed, hoping that will happen on site on Wednesday when the service guys come. There are things I don’t like about Phoebe but there are more things I don’t like about the rental chair and I want to get back to normal as soon as I can.

Today’s Telehealth Visit Summary

I had a telehealth visit with my primary care provider today (who doesn’t look like this image). In advance of the call, I sent email with lists of things on my mind so she would be aware of them and so we would cover everything in our limited time. Here’s a summary of our conversation so I remember later what was said.

1. Got meds for a urinary tract infection (UTI). Should clear up within the week.
   
2. Got a prescription for Baclofen to help deal with my leg spasms that ripple from knee to toe on the right leg. They’ve done this for months but regular muscle relaxant doesn’t really help because the problem is neurological, not muscular. I found out about it from my Facebook group for spinal cord injury rehab, which has been a great source of information and inspiration.
   
3. Shoulder pain associated with nerve tingling in the upper arm is probably caused by overuse with my chair and walker. Got a referral to PT for therapy and ultrasound treatments for the shoulder, which will be expanded to include more PT for my leg. I need help learning to use the rollator walker safely after the arm is better. I’ve been too lax in my upper arm strengthening. As the arm heals, I’m back to using my weight bars and therabands.
   
4. She believes my surgeon was too gentle with me about the extent of my limits and what I’m going to be able to get back post-op. It made sense to not hit me hard with bad news last August when I was already going through a hard time, but now that I’m a year out from the surgery, I’ll be talking plainly with the doctor at what will probably be our final visit. Whatever he says, I know I have to keep exercising and walking as much as I can, but a wheelchair is probably in the cards long term. It might be time to consider a power chair but I want to give the rollator a good try first.
   
5. Lower back/SI joint pain is being addressed with pain management. I can’t get an injection while I’m on the blood thinner to dissolve the existing blood clot. I’ll see that doctor in 2 weeks.
   
6. Advised to stop taking my arthritis med because it is a blood thinner and shouldn’t be combined with Xarelto. The prescribing doctor didn’t tell me this so it’s clear they didn’t look at my current meds list. Why did they ask me to write it all down for them anyway? No anti-inflammatory will mean arthritis pain to deal with. Should be fun, right?

Sleep – what’s that?

I’ve done most of my sleeping lately in my lift chair. It’s reasonably comfortable but the legs don’t go up as high as I need them to elevate given my edema and blood clot. My adjustable Sleep Number bed is comfortable but not when I’m flat on my back, and it’s not so easy getting up to pee multiple times a night. Because I’m now on Xarelto, that’s happening about every 2-3 hours.

Let’s talk about what that involves. I can’t go to the bathroom with the walker unless I have my AFO braces and shoes on, which just ain’t gonna happen in the middle of the night. So I keep the wheelchair by the bed. First I park the chair, stand, and grab the walker by the bed to help me with balance as I pivot and turn to sit on the side of the bed. Then I position a therapy pad between my feet and put them on top to help me push back in the bed so I’m not teetering on the edge. I use my leg lifter to swing each leg up one at a time, then pull the covers over me. And then I grab the bed ladder and use it to pull myself over a bit more in the bed. Last, I use the bed controls to raise the feet up as high as they go and the head up a little bit, and use the app on my phone to adjust the bed pressure level. Then the lights go out.

I’m afraid of NOT responding when my body says “Hello! Time to go pee!” I have to reverse all of the above steps, and use the flashlight app on my phone so I can see what I’m doing without waking myself up completely. When I use the bedside light or overhead light, it might as well be morning. Plus the cats hear me moving and come to investigate, which doesn’t exactly help. If I don’t adjust the bed back to 100, it’s like sitting in a hole when I try to go back and swing my legs up. So yes, it takes all those steps – which I have to do all over again to get back into bed.

So most nights lately I start in bed, then move to the lift chair after I get up to pee the first time, because it’s easier to get up from the chair than the bed. But without the legs being high enough or my CPAP available, I sleep lightly if at all, leaving me dozing in the chair during the day and really, really tired.

On the other hand, it’s still so much better than a year ago when it took two people to get me from the bed to the bedside commode, after using the call button and then waiting for the CNA to find a second person to help. I had to wear the hated gripper socks; now I can be barefoot which saves time and steps. I wasn’t strong enough to get my legs on and off the bed without help, and I couldn’t clean myself after because of back surgery limits on twisting and turning. Plus I was very uncoordinated navigating all this newness, full of fear that this would all be permanent.

But it wasn’t. Time and practice and therapy made the difference. It’s good to remember where I was a year ago, to see the difference and to see how “normal” my life actually is even with my limits. And as annoying it is to still have to do all those steps to get in and out of bed, I can do it and do it myself in my own home. I sleep better in the bed and it’s worth the effort to get myself there.