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.

More PT Ahead

My right shoulder has been killing me. Isn’t it odd that all of the aches and pains and sprains and tingling – even the blood clot – are happening on the right side? Very lopsided. In any case, the physical therapist was here this morning to do an assessment of the shoulder/arm in response to a PT order from my doctor. He also assessed the ankle; the order for that came through when I sprained it, but was postponed when they found the blood clot. It’s been unstable so it got assessed and I get more PT.

There seems to be a nerve impingement as well as super tight muscles. Right side testing was considerably shortened from the normal left side, so PT will help. I got three stretching exercises to do in the morning and will go to PT twice a week for some indefinite time, because we’re also going to add in some work with the legs and walking. Chris was impressed with how much walking I’m doing on my own, so that feels good and as though I’m not slacking off somewhere. Pain needs to be heeded, and pushing the shoulder pain could result in other problems for me.

Also got instructions on how to shrink my giant abdominal hematomas and clarification of why I’m not to wear AFO’s on the NuStep. Wearing them supports the ankle but it can disguise any rubbing of the foot in the brace/shoe that could cause more problems. No one explained that before, or at least I don’t remember it, just that they didn’t want me wearing AFO’s on the machine. Got it. I think I need to reverse my shoe plans so the AFO’s go on first whether I think I’m walking or not, since they support the ankle. Mid-afternoon I’ll take them off and put on the zipper shoes to do the NuStep. Or not, if it’s not a NuStep day. I’ve been doing that backwards and I’m more likely to make myself go walking if the AFO’s are already on.

I’m not reluctant to walk. The problem is the cats, who want to go out in the hall with me when I go. I’m slower than someone not using a walker (or wheelchair), and they could easily get past me into the hall. So I try to plan my walks when they are flaked out asleep on the porch or in their boxes or other sleeping places. If they don’t cooperate, it makes things harder, and that’s when I wait and sometimes the walk just doesn’t happen. Life is like that.

My Smartest Purchase This Year

I bought many things in the last year but my smartest purchase was my NuStep which I ordered just after Christmas. It was very expensive and felt like an indulgence. I was wrong; it’s been worth every penny. Why, you ask? Because my legs are significantly stronger, and stronger legs are what make it possible for me to stand up easily and to walk with a walker without falling.

I used the NuStep at my gym for at least a year before I went to the hospital last summer, so I was really glad to see and use it at my first rehab center last August. It wasn’t available at my second rehab facility, but we have one in my building up on the 4th floor exercise room. I just didn’t think it would be practical for me to always have to navigate there and hope no one else was using it.

When I ordered it, my original plan was to use it twice a day but that never happened because of shoes. I wear my cute zipper shoes without the AFO’s on the NuStep but need to change to my other shoes with AFO’s so I can walk. I’m making a wild guess that changing shoes is a lot harder for me than it is for you, but in any case, it takes time and energy and I hoard both as much as possible. It’s also often not very convenient to do several times a day.

I “do NuStep” (as a verb) 4-5 days a week for 30 minutes and am now on resistance level 5. I watch TV or read on my Kindle while I work out, often with a load of laundry in the wash. I can start a load, get on the machine and work out for 30 minutes, then move clothes from washer to dryer. That saves me from backtracking on thicker carpet, which hard for rolling the chair, so being able to piggyback projects makes me happy.

My legs are now wicked strong, or at least in comparison with last summer. The NuStep also works my upper body and I can usually feel it in my arms and across my back the next morning. Climbing on the machine is still a challenge. I use a leg lifter to move the left foot across the middle of the machine and to get the feet up on the pedals, and I wrap a gait belt around my thighs just above the knee to keep my right knee from flopping out while it’s working. Getting off is much easier and I can be back in my wheelchair within 3 minutes.

The machine itself is quiet, easy to set up, and easy to use. It was used, which helped keep the cost down, but in perfect condition. Ellie and Emma have accepted that it lives here even though it’s big and doesn’t offer them treats. Having it inside my apartment was another brilliant decision, if I do say so myself. I have no excuse for not using it because it’s always there and no one else is already on it when I’m ready to go. It’s much more practical for me than having a guest bed that’s never used.

If you have access to a NuStep at your gym, give it a whirl.

Out on my own

I finished formal out patient PT on June 3rd. I’m sure I’ll be back, especially when it’s time to transfer over to a rollator, which isn’t as easy to use as you’d think after hanging on to using a folding walker for almost a year. But after 10 months of therapy, it’s oh so nice to not have to be somewhere at a set time three days a week to do things that I can mostly do on my own.

I use the NuStep 4-5 times a week for 30 minutes and am up to level 5 on resistance. It still takes a while to get on the machine but I can get off in under 3 minutes. I’m also using my weight bars to do arm exercises every day. I’m using a 2-lb bar which doesn’t seem like much until I do 3 sets of 20 of whatever it is and everything burns. I need to be doing standing leg exercises at the kitchen sink, which I will do when I finish this post.

Walking is a bit of a challenge. The person I hired to walk with me isn’t working out that well because of schedules, since she already works for a bunch of other people. I’m spending half a day walking around in the apartment using the walker, trying not to run into cats who are fascinated by Mommy standing up. I don’t want to not be walking in the hall but don’t really have anyone to do it with me, trailing behind with a wheelchair.

Frankly, I know I’m not going to fall. I know what that feels like and all I’ve felt when doing hall walking has been the need to sit down if I walk too far. So I’m thinking about going out in the hall by myself and walking up one apartment, turning around, and going back again. And then doing that several times during the day. If I’m tired, I can stand and rest, but these are short well marked distances and I do not think it’s going to be a problem. I might be stupid here, but I don’t think so. I know what I can do and what my limits are. And if I can go when I’m ready, I don’t need to plan it around someone else’s schedule.

I’m not really expecting to get much better. I could be wrong. But my research tells me that surgery doesn’t reverse severe spinal stenosis; the damage is already done. At least the surgery will stop me from getting worse. And if what I have now is what I’m going to have, well, I can deal with it. Whenever I’ve been challenged and had to add new daily living functions, I’ve been able to rise to the challenge and get it done. Things like laundry, bed changing, and showers. Yayyy for showers! I’m sure there are other things out there to add, or maybe it’s just getting more comfortable and confident with the things I can already do.

My home-health therapist told me at the end of March that I should be prepared to find myself in exactly the same functional place in 6 months as I was then. Nerves grow when and how they want; people don’t really know what to expect from them. I don’t think I’ve gained much since then except getting back to walking after a rough back pain patch. My out-patient therapist told me that my body remembered how to walk (which is an improvement, because 10 months ago it didn’t know anything) so it will be easier for me to get back to movement.

No matter what, I stand up a lot. I’m in the kitchen doing dishes, cooking, fixing meals, getting food for the cats. I’m in the bathroom brushing my teeth, and standing in the bedroom to make my bed and get dressed. I do three-point turns from the wheelchair to the lift chair or the NuStep. I stand up to do laundry. All of these weight-bearing activities help keep the muscles strong and stop them from atrophying. I will NOT stop doing them, whether I’m walking in the hall or not. They have become normal, which is itself amazing. I don’t take them for granted, not after this past year.