What do I want to do?

This week I let go of what I think are my last activities from before moving here. I managed websites for the church, the club, and a local benevolence organization, as well as communication lists for church and club, plus the membership database for the church. And in my life before Texas, I managed three websites and worked with the library’s online database almost every minute of my working life. I love systems and databases and nerdy things.

I don’t have any of that anymore, except for this blog which I’ve maintained for 20 years.

I should be glad to let them go, to know that other capable people are building on what I started. But right now I’m mostly sad and feeling useless. It’s not appropriate to keep my hand in with them after moving, but I haven’t filled that hole with anything else that I want to do; doing physical therapy and rehab exercises isn’t the same at at all.

Let’s face it: it takes me forever to do just about anything. And I’m tired of doing it, which is really too bad because that’s what my life is right now. It’s hard having the physical limits. I want to be doing something productive and functional but don’t have the time or energy. Instead, I’m just seeing the things that I used to do go away but haven’t replaced them with anything else. I’m retired so I don’t HAVE to do anything else; I just don’t feel very useful.

I have a “wouldn’t it be good to do” genealogy project that I’ve been talking about doing for about four years: compiling printed volumes for each grandparent’s line with full-size images of source documents. I’ve spent thousands of dollars over the years for records and database access to materials, and I’d like to get those digital images preserved in print in case one of my family gets the genealogy bug and wants to pick up the lines where I left off. They shouldn’t have to rebuy what I already have. The family history book I compiled for each of the family is fully sourced, but the actual source images aren’t all included.

But all I’ve done is talk about it, not actually do it. I need to really decide if this is worth my time and energy and DO it or let it go so I can do something else. No one in the family would know or care if I don’t get it done, which somehow makes it worse because I’m not sure how much I care about it. I will take a day this week to block out what would be involved to actually complete it, then decide if I want to do it or not.

My original retirement plan was to work on genealogy research, which I’ve loved doing for over 50 years. If that’s not what I actually want to do anymore, I need to think of something else to to do instead. Maybe working to help index records would be a worthwhile way to give back to the genealogy community. Or not.

Seven Month Post-op Update

Today was my seven month post-up visit with my spine surgeon. I got some answers, some good news, and some, well, sobering news.

Answers:

1. I got an order for 6 additional weeks of out patient therapy, three times a week, specifically to use e-stim again. I had that in out patient PT last fall but it’s not available in my home PT. I think stim helped a lot and I’ve noticed that the spasming-tingly feelings are way down. We’ll see if more stim wakes that up a bit.
   
2. He believes that the crippling burning pain that I experienced twice is not from a pinched nerve, because those areas of the spine were cleaned out in surgery. They were probably caused by SI joint problems (duh, I knew that). A 4-day tapered dose of Prednisone was appropriate and should be requested from my primary care doctor as soon as I am aware that things are happening again.
   
3. I should also make an appointment with my pain management doctor to discuss getting SI joint injections or at least additional pain meds.

Good News:

1. Knee strength in both legs was good.
2. He was pleased with the amount of walking I’m able to do.

Sobering News:

I should expect to have a wheelchair for a long time for at least some of my activities. I am not really surprised by this, given how bad my right foot still is at this point. And I’d rather have truth than platitudes.

Something Else to Figure Out

My aide will not be working with me anymore; her life is full and busy and she doesn’t have time for me at this point. I understand and wish her well, but it does give me something else I need to figure out. I don’t need nearly as much help as I did when I came home from rehab five months ago. I needed help with showers for another three months but I do those on my own now. Same with laundry, which I hate but can do. Now that I can put my AFOs on by myself, even if it takes a long time, I don’t need help with that either.

What I do need help with is walking. PT doesn’t allow me to walk by myself yet, though I’m going to advocate for being able to do it in my apartment, at least on the laminate flooring areas. But I need more walking and have been walking in the hall followed by a wheelchair in case I need to sit down and rest. I’m not going to fall, just rest, and I can tell when I need it. The hall doesn’t have any seating which is why the wheelchair follows me as I go.

Finding someone to help for 30-45 minutes/day is a lot harder than a larger chunk of time. My friends here can help some, but some of them are pretty fragile themselves. I’m hoping I can connect with someone already helping another resident here (and therefore already in the building) who could add a little extra time. Or possibly with one of the student concierges who may have time before they go on duty to come by and help me walk in exchange for some extra money.

What I want is to not need anyone’s help, but I’m not there.

I still have home health PT for another few weeks but expect to be discharged then. On the other hand, I see my spine surgeon on Monday for a routine follow up, and if he thinks I should be having more e-stim treatments, I’ll be trading home PT for more out-patient PT. Because you can never have enough PT, right?

Image credit: Illustration 154618448 © Kakigori | Dreamstime.com

Milestone after 7 Months

My spine surgery was 7 months ago today. And yesterday, for the first time in all those months, I put my AFO’s on by myself. It took about 25 minutes and a moderate amount of swearing. I was able to do it again this morning, though it took longer and was more frustrating. However, being able to do this MYSELF has eluded me from the beginning, and it’s a huge milestone.

Occupational Therapy has been here a few times to work with me on it and we decided that the only way I can put these things on is to shove the AFO’s into the shoes before I try to put the foot into the AFO. I have to use the compression socks to pick up the leg and manouver the foot into position, since the right foot in particular is not cooperative. I can’t bend the ankle or raise my toes as the foot goes into the shoe. When we were trying out options on Thursday, I managed to break a rivet, making it impossible to strap the AFO into place. Oops. The orthotist had me come in that afternoon to repair it; they also removed the velcro strap around the ankles at my request and as suggested by Physical Therapy. I think that made a difference.

But being able to do this MYSELF is huge because it means there’s a possibility of walking in my apartment by myself. I’ve been limited to walking when someone can be here with me to put on the shoes and to follow me around with a wheelchair in case I need to rest. Well, if I can put the AFO’s on myself, I can get a neighbor to help me on days when my aide isn’t available, which will give me more walking days. More walking = more confidence & strength = ability to walk shorter distances on my own.

It’s been a long 7 months. I don’t think the right foot is better than it was when I had surgery, though I think the toes can move a little bit. But the ankle is still frozen and lacks normal sensations. And the bottom of the foot feels spongy and the whole foot drops all the time. I can’t walk without the AFO’s to support the foot and keep it from dropping. Period. The left foot feels more like a foot but it also has flexion and sensation problems. The surgeon said to give it 12 months; PT says to give it 12-18 months, so I shouldn’t be discouraged at 7 months to have this lack of function. But it’s still sobering.

Don’t worry, I’ll keep working on what I can do, but it’s hard. So seeing something happen for the first time after seven months is very motivating. Maybe one day I’ll learn to like the AFO’s, maybe when I can put them on more easily without swearing so much. But even if I don’t ever like them, I already like what it means to me when I have them on – especially when I can do it myself. Go me!

Better at last

My body doesn’t hurt and hasn’t in over 24 hours. Yayyy! It started feeling good one day after finishing the 4-day tapered dose of Prednisone. Makes me wonder if taking the Prednisone sooner would have had the same result faster; I suspect yes, because I suspect the SI joint was inflammed and didn’t calm down on its own. One side effect of the Prednisone was serious water retention. My legs, especially the right one, were hugely swollen and my toes looked like little sausages attached to a water balloon. The combo of finishing the med and spending several nights in bed (finally! yayy!) with the legs more elevated now has them down to normal size and feeling much better.

I noticed today that I’m no longer having muscle spasms/cramping up and down the foot/leg. I’m not sure when that stopped, actually, though I was very aware of vice-like cramping while I had the burning leg pain. Now, though, there’s almost nothing except a little buzzing around the big toe. The ankle area still feels as though it’s in a boot and the ankle is still frozen in place; these are side-effects of spinal stenosis and is called “stocking paresthesia.” I can move the toes on the right foot up and down a little bit, but the ankle doesn’t move at all. After almost 7 months, this makes me sad, but the frozen ankle thing was happening for at least six months (probably more) before I had the spine surgery, and I am beginning to suspect it may be permanent.

The lack of spasming tingly sensations in the lower leg is actually weird now that I’m aware of it, because they started almost immediately after my surgery and went on for months. I assumed they meant the nerves were waking up and were a Good Thing, so I can’t help but wonder if it’s a Bad Thing that they’ve stopped. Something to ask my spine surgeon when I see him later this month. I’m also going to ask him about the incidents with pinched nerve/burning leg pain, because I need to know what to do when they happen again. Go to my primary care doctor for Prednisone earlier in the game? Go to him? Get SI joint injections? Something else completely? Better find out before I need to fix it again.

I slept in my chair for most of the last 2 weeks, which is a lovely option when I can’t get into the bed without crippling pain, but which doesn’t let my legs be as elevated as they need to be to keep them from swelling. It also raises the issue of where to put my CPAP machine, which got moved to the living room to use from the chair and just got moved back to my bedroom now that I’m lasting most hours in the bed. Last night was the first night when I could actually move the right leg after I got into my bed. I’m perilously close to the left side of the bed and in danger of falling off if I’m not careful, but least now I can climb on and use my bed’s adjustable frame to make it comfortable. It was not cheap to get, but I think it’s finally paying off.