Elevator drama

My wheelchair got caught in the elevator on the way back from PT today. The door opening was a little uneven, and the left front castor wheel turned and got stuck between the car door and the floor opening. It lurched me forward a little and I couldn’t move the chair in any direction – and I was afraid I was going to fall out on the floor.

I live in a senior building and no one is particularly strong or muscular, but one of the housekeeping staff got in the elevator with me. Someone else held my hand while another went for help. But by the time maintenance got to me, no more than 10 minutes (I think), another housekeeping staff member lifted the chair and me back into the elevator car and all was well. Scary, but well. My right shoulder is now killing me, the chair is okay, and I’m just shaky.

I had visions of an incident when I worked in Boston, when a wheel from a booktruck came off and fell down the elevator shaft, leaving us with a heavy truck with only three wheels. Would my chair wheel go down the shaft? What would happen to me if I fell?

I’m getting myself a big glass of wine and some chocolate.

Report from today’s doctor visit

I saw my primary care doctor today for the first time since mid-December to discuss bilateral upper arm/shoulder pain. As expected, I couldn’t get on the scale since there was nothing to hold on to, but that wasn’t a problem. Blood pressure was excellent (112/60) with slightly elevated temp. She concurred with my self-diagnosis of biceps tendonitis from overuse. Pain started after I got my new AFO’s which I put on every day with lots more walking, which puts extra pressure on the arms using the walker. I’m already taking a strong anti-inflammatory for arthritis which she wants me to continue, adding Flexoril to help relax the muscles, and she put through orders for additional therapy for the shoulders.

My earache is because of fluid on the ear but it’s not infected. It’s bad allergy season for me right now, which isn’t helping since I’m allergic to all the flowering things. I’m to make sure I take Flonase every day which I’ve been doing but not very regularly. The cough will also benefit from Flonase and a return to the hated Netipot.

I’ve also been prescribed Cymbalta as an anti-depressant, which I think is needed. This has been a very long eight months and I’ve had a harder and harder time staying positive and motivated. The medicine will help me get to a better place after I give it time to get in the system. I’m starting with the “old person” dose but it can titrate up if needed.

We also discussed a conversation I need to have with therapy about walking on my own in the apartment with a walker. I wasn’t allowed to do this before, but at some point, I need to be able to do it, so what needs to happen to make that possible? Feeding the cats and cleaning up their litterbox (and cat vomit) are best done from a chair to minimize fall risk, but walking to the kitchen or out to the porch shouldn’t be hard to do. I haven’t been close to falling and have been more worried about just being tired and needing to sit down. This shouldn’t be a problem in the apartment, unlike the hallway that has no chairs. Something for me to bring up with PT tomorrow.

I don’t want to “adult” today

Both upper arms have been sore all week. Well, actually, for about 2 months but they’ve gotten progressively worse. Walking with a walker hurts because of the pressure applied with every step; standing up uses the same pressure on the wheelchair arms. Putting on my AFO’s hurts because I’m hauling the legs around using upper body strength to get them positioned into the brace and shoes. And using the NuStep also requires hauling the legs up into position on the pedals.

Physical Therapy decided I should not do any of those things this week (well, except standing; that’s necessary) to give my arms a rest while we figure out what’s going on. Instead of e-stim on my legs, I got e-stim on my right bicep followed by ultrasound, and I think it helped a lot. There’s still soreness, a deep ache, and arm weakness. So I’m off to the doctor tomorrow which is an adventure in itself.

My left thigh has been twitching and the neuropathy in the right foot is worse, or at least it seems worse. The “stocking” sensation makes it feel as though it’s in a cast. The right ankle hasn’t improved at all since August and my hip flexors are incredibly weak. I’m doing exercises, but my limits make it hard to get in a good position to work them properly. It’s very hard to pull my leg back and almost impossible to get it up on the footrest far enough to keep it from falling off. And my right foot/leg are very puffy from edema in spite of elevating them as much as I can and taking diuretics and drinking water. I think we’ll be talking about it tomorrow at the doctor.

And I’m feeling really fat, because I am. Although I can’t get on a scale, I know from the way clothes fit that I’ve gained back much of what I worked so hard to lose on Noom. Lots of explanations for that – obviously much less mobility, boredom, excellent food that I don’t have to cook, and needing comfort. Food has always provided that for me, much as I know it’s false comfort and that I’ll pay for it later. I’m really, really tired of feeling as though I need to diet and watch food all the time. I’ve done it my whole life and I’m still fat. Maybe I need to just accept it with its limits and move on. I did throw out most of the processed foods in the kitchen, which really wasn’t that much anyway, and am trying to make better choices. I know how to eat better; I just need to do it. Maybe that will be enough.

I don’t feel as though I have a lot of years ahead of me, which could just be that I just don’t want to have a lot of them with my limited mobility. I’m finding it hard to stay and be positive, and even harder to stay focused on doing more exercise. Sometimes it feels like that’s all I ever do now – exercise, go to lunch, and therapy. And this week, without the extra exercise, I feel like a slug. So today I’m just indulging in that and not adulting. I know for my mental and physical health that’s not good to do often but for today it’s fine.

I’m in a mood

I’ve been in a mood the last few days. It’s been hard to not be in a choir and singing. It’s what I know, how I worship, how I’m in community, and I miss it so much, especially during Holy Week. The Episcopal Church is in the liturgical tradition and we have services all week. I’m used to singing all of them, from the celebration and drama of Palm Sunday to foot washing and celebrating the Eucharist on Maundy Thursday, ending with the stripping of the altar. Then the quiet agony of Good Friday, often ending with a requiem in the evening after services from 12-3. Saturday’s Great Vigil was always my favorite Easter service, recounting in chant and ritual the history of the Jewish people up to the death of Christ, then bursting out with bells and lights and alleluias of Easter. Easter Sunday is a work day for choir people, often with 2-3 services to sing, and the Vigil gave us a chance to be in the moment and worship ourselves.

This year, though I have a church and followed online services, I’ve not been physically present – and not singing. Most of my neighbors are Baptists who of course celebrate Easter, but do so very differently than the tradition I’m used to. The day is the same, the resurrection is the same, but the way we do it is different, and the music is very different. I miss my friends from choirs past and found myself watching YouTube videos of choirs singing favorites such as Beethoven’s “Hallelujah!” from Christ on the Mount of Olives, Matthias’ “Let the People Praise Thee, O Lord“, which I learned in Virginia, and “We Shall Behold Him” which is newer to me but oh so powerful. And then there are the hymns. It’s not Easter without the eleventy million verses of “Hail Thee, Festival Day” which I think only Episcopalians sing.

On top of that, it’s been a week with lots of people in it, making me realize how much I’m more isolated now than ever before. Having people come over is great and wonderful but really tired me out. But if I don’t ask for help, ask for visitors, I don’t have them. I guess I still expect that other people will reach out to me but they really don’t. It’s out of sight, out of mind – and I can’t complain about it because I recognize that I often behaved that way myself. If someone I knew moved, there was a hole but it quickly filled up with people who were still there and life activities that kept going. I wasn’t good at keeping up with them when they were gone, so why would I think people would keep up with me after I moved? The difference this time for me is that I only moved 12 miles away instead of 1600 miles. I guess I thought it was close enough to stay in touch but it really hasn’t been. But phones work both ways and if I want to talk to/hear from people, I have the responsibility of reaching out myself. Being in a wheelchair doesn’t abrogate that.

So it’s a conflict. I’ve been alone for so much of the last eight months. Sometimes I’ve been achingly lonely, missing people like my right arm and needing their help. Most of the time I’m fine, just adjusting to being alone – tho months and months of Covid isolation actually prepared me for that. I’m figuring out how to do more for myself, partly to prove that I can and partly because there’s no one else to do things. Today I figured out how to reorganize near my bed so I can put my decorative shams back on the bed and have a place to put them when I sleep. I know, that sounds small, but it really isn’t. My bed looks more finished and I’m therefore happier.

Also making me happier is FINALLY having my porch screened in. The cats have hardly been inside since Wednesday, preferring to hang out on their chair cushions supervising the lawn and watching birds and squirrels. I haven’t figured out how to get out on the porch without using the walker and I’m not supposed to be doing that by myself. The chair won’t go through the door so it has to be the walker. I need to ask therapy this week about that.

Physically I’m in discomfort from problems with my shoulders, mostly on the right but some on the left as well. You can’t roll yourself in the chair without reaching backwards in a motion I don’t use for anything else, but the muscles are also essential every time I try to stand up or walk with the walker. This pain is muscular, not nerve (for a change) in the front of the upper arm/pec/inside the armpit. How on earth do you put anything on THAT to help? It hurts and it’s annoying.

Eight months later

I don’t know if I will ever be able to do more than I can right now. The home therapist told me that while it’s certainly possible to see additional changes up to two years post-op, it’s also possible that I won’t see any improvement at all in the next six months. I need to be prepared for that while not being depressed. I don’t much like my new normal but I’m getting used to it. But it’s hard to keep the enthusiasm up for therapy and workouts and exercise when it seems that that’s all I’ve been doing for eight months.

On the other hand, even if I don’t get better, I don’t want to go backwards. I’ve worked too hard and am mostly independent; I want to stay that way.

I have to be weight-bearing every day one way or another to make sure my legs don’t atrophy. I work out on the NuStep five days a week (on the advice of therapy) to strengthen my legs. Everything I do takes so much time and most mornings, the words heard most often are “Oh, crap!” as my legs run into doors or get stuck on carpets, or I see cat vomit to be cleaned up. Dressing takes 20-40 minutes depending on whether I can wear the zipper shoes or need the AFO’s to start the day. And if I start with zipper shoes, I will need to change to AFO’s later to do therapy and walking. I hate them. And I hate putting them on.

On the other hand, I have feet. And I’m not freezing in a dark basement on a concrete floor while bombs go off around me. I’ve thought about what it would be like to have my limits and be trying to survive in Ukraine right now. I think I would be dead because I couldn’t escape. That certainly brings things home. My limits are still in a warm, comfortable home with food, water, heat, and Internet service, and I’m grateful for that.

At the same time, I’ve made some medical decisions about my body in light of being mostly in the chair now. I’ve told my doctor and my family that I am not going to do any diagnostic testing such as mammograms and colonoscopies because I don’t want to do anything if the tests find a problem. I know this could mean a shorter life, and frankly, that’s okay with me. While I have people who love me, I have no husband, partner, or children and the medical decisions are mine to make. I’ve been totally dependent on others to help me turn, stand, move, use the bathroom, etc., and I don’t want to go there again. I don’t have a death wish and I’m not planning to do anything to end my life. I just don’t want to have medicine prolong it just because they can. I am not afraid of death when it is my time.

That time is not now, and I’m not giving up even though I’m tired of my new normal. But I also can’t operate on the kind of higher-stress levels that I had in early therapy. I’m trying to figure out how to have an open house of some sort here to show my new home to my local friends – who I really miss seeing. And also to work out some sort of life that doesn’t only include NuStep, lunch, walking, and therapy. That gets old fast. It already has.

I’m ready to weed out and declutter more, though it’s much harder to do from a wheelchair than when you can just stand up. I have clothes to bundle up and kitchen things to take to Hangers for Hope, as well as some broken or other weird things that just need to be tossed. And several bags of books to go to the used bookstore. I have a big pile of Birkenstock sandals that I can no longer wear and purses that I won’t use that can find new homes. But I need help to get things packed up and carted away to appropriate places. It’s hard to ask for help but I know that it will be there if I do. It’s time for a plan to make it happen so I can make some breathing room. You know, before the open house.

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