I can take the truth a year later

Last year on this date I moved from the Olympic Center to Meadow Lake Skilled Nursing for another 6.5 weeks of rehab before going home. I cried when they left me in my room. I pushed so hard those first three weeks after surgery and gained back the ability to stand up and walk very limited distances.

But that was really big. On my first day with her, I asked my Olympic Center physical therapist what was actually wrong with me. Doctors use big words and I didn’t really understand why I couldn’t stand up or make my legs work, and I knew that nurses and PT’s often tell you the truth in words you can understand.

Veronica told me that I was an Incomplete Parapalegic. That sounded really bad. But it also was very clear. “Incomplete” here means that I still have some motor and sensory function, which are Good Things.

Here’s the problem – a lumbar laminectomy (my surgery) cannot reverse the damage of spinal stenosis, which was going on in the lower leg for years. The nerves got more and more compressed which is why I started to lose sensation and movement in the right leg. When I finally had the surgery, it was two years after the stenosis was originally diagnosed, and it was already severe at that early point. I was falling a lot, but I was still able to walk around without assistance. We had every expectation that I would come out of the surgery with that same level of functioning.

But that’s not what happened. My legs collapsed under me two weeks before my scheduled surgery, and even though I had the same operation as originally planned, my functional ability was not the same as it had been before. I came out of it with uncooperative legs, not because of the surgery but because of the damage already done before I had it.

I’m not going to be able to give up a wheelchair and just walk around with a walker for long distances. And I’m not giving up to say that – I’m being realistic. And it’s okay. I can do this.

I talked with my current physical therapist this week about looking into power chairs as another mobility option for me, especially for longer distances here, because my shoulder keeps being inflammed from all the rolling I do. And instead of trying to disuade me, she agreed that it would be a good tool. She wouldn’t have said that if she didn’t believe it, and she wouldn’t have said it a year ago. Medicare already bought me a chair and they only cover one chair every five years, so a power chair would be completely self-pay. But it could be a really nice Christmas present to myself, don’t you think?

It’s Been Quite a Year

I never dreamed of a year like this one when I was planning for retirement. I left Yale Law Library in October 2015 and within a week, left for Texas. Not long after I got here, I found myself redesigning the community church website and then working there for five years. Last August I left that job when I realized I needed all my time to concentrate on learning to walk and live independently. I was right that it would be a full time job, but it’s certainly not what I expected to be doing when I wasn’t getting a paycheck.

I had spine surgery a year ago today that arrested the severe spinal stenosis, but it didn’t reverse the damage that had been done. I was very scared of what the future would look like when I was in rehab and not able to even stand up or go to the bathroom without two people helping me. I didn’t think I would be able to go back to my brand new apartment or take care of my beautiful floofy kitties that I loved so much. I didn’t see any light in the tunnel at all much less a way to get out of the tunnel to something beyond that.

I learned that I need to do what I can for myself but also recognize when I need help and ask for it – and then accept the help that is offered. I’m stubborn and independent and am used to living on my own, without anyone to depend on to help with things around the house. I’m still alone but there are people right out my door who will come if I ask, who will notice if I don’t show up for things. There are sweet friends who took care of my kitties when I was gone for so very long. That I can hire people to help me with personal care but also therapists who can teach me how to do some of those things for myself. The day I was able to do a shower on my own was a great day indeed even if it took me an hour.

And I learned that I wasn’t limited to hoping I could stand up. I can walk again, thanks to my wonderful physical therapists Veronica and Grace. Oh, I’m still using a regular walker with its cheetah print tennis balls but have a bright red rollator ready when I have the balance and strength to work on using it. It should be an enormous help since I’ll have a place to carry things from place to place (which is hard to do in a wheelchair) as well as sit when I need a rest. I can walk about 3/4 of my hallway and back again without stopping, and am working up to doing the entire hallway soon.

But the reality is that I probably will not be able to ditch the wheelchair or walker. There is a lot of nerve damage from the stenosis that won’t reverse. I’m not as worried about it as other people seem to be, probably because I’ve been in the chair for a year now and know what I can do. Caring for the cats – food, water, litter, cleaning up vomit – is best done while seated, and while I might be able to do that with a rollator, I know I can do it from the chair. I love them dearly and need to be sure they’re not shortchanged by my limits.

I’m so grateful for my friends here at Meadow Lake and for its accessibility and spaciousness. I couldn’t have dreamed up a better place to be with my physical limits. And I’m especially thankful for the friends I visit with online and by phone if not in person, who keep me connected, interested, and engaged. You are my tribe and I love you.

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.

I fell apart today

I hear a lot of people telling me that I’m strong and so focused and so determined. Maybe. But it comes at a high cost. Today I fell apart in therapy, grateful that for some reason it was the only day ever that my therapist and I were the only ones in the rehab room.

I’ve been pretty seriously depressed for months, and in denial of the toll it was taking on me to be strong and focused and determined. I didn’t feel that I had a choice. No one is here to do things for or with me, things like self-care and home-tending and figuring out how to get from Point A to Point B. Oh, I had help from home health and out patient therapy, and I hired someone to help me early on with showers and laundry, etc. But when roadblocks popped up, I found I could do more than I thought I could do. And it’s important to me to be as independent as possible for as long and for as much as I can do.

But the reality is that I’m in a wheelchair with feet that don’t work right. My right ankle hasn’t improved in ten months and may never get better. I can walk 300 feet or so but that’s not all that much – though it’s certainly better than Day One when I was unable to stand up. Yes, there’s been improvement. But it still sucks.

When I’m depressed, I eat, and over the past 10 months have managed to regain all the weight that I worked so hard to lose to get me qualified to have spine surgery. At first I wasn’t sure if my physical discomfort was just because I was in a chair and not moving as much as I had before. That’s certainly part of it. But I’m eating too much of the wrong things. I know how to do this. I’ve done it over and over and over in the past. Let’s face it – I’m not feeling joy in a whole lot of things right now, and food brings comfort even when it causes discomfort.

And I’m lonely and terribly isolated. I love my apartment and have NO regrets about moving here, but I’im one of the younger residents and I really miss being with people my own age. I had some friends over last week for a lunch and visit, and I loved seeing them so much that it really drove home that those visits were few and far between in the last months.

At my request, my doctor put me on an anti-depressant about a month ago and I’ve asked the therapy people for recommendations of people I could talk to about the huge life changes I’m dealing with. Of course, getting to them won’t be easy but not much is these days.

I know, whine whine whine, poor me, you can do it. Yes, I can. I can deal with all of this. But not today. Today I want to cuddle a kitty and eat cookies and cry a little. I’m allowed. Because tomorrow I have to get up and keep going.

Discharged from OT

I was discharged today from Occupational Therapy, ordered by my primary care doctor to treat my sore shoulders which were suffering from overuse. They basically hurt all the time. First we treated them with ultrasound and diathermy, which uses electro-magnetic currents, and with resting from walking or NuStep. Putting on my AFO’s strains the shoulders from hauling and manipulating the legs into proper position, and walking strains the shoulders with pressure while using the walker (because it’s hard not to hang on for dear life). And of course, I use my arms to roll around in my wheelchair Phoebe.

After that, I did a bunch of things: stretching on the mat using a roller or little circle things. Weight bars to do curls, extensions, swings, and other exercises. Using the pulley weights. The arm bike with increasing tension. Best of all was a quick massage with BioFreeze to finish the session.

The arm muscles are better but the right shoulder still aches at the end of the day and sometimes at night, interfering with sleep. I’ve been using a muscle relaxant and a heating pad at the end of the day, which help. But if I wake up and it still hurts, I’ve learned to just relax and rest it for a day. That means no walking. So far one day of that seems to do the trick.

In any case, this round of OT is over. I invested in a set of weight bars to use at home to replicate my therapy exercises. You can do more with them than with a set of hand weights and I have them in the living room where they’re easy to grab. I’ll continue to use the heating pad and rest when needed. And if things flare up again and I need more help, I know I can go back with just a call to my doctor.