Updates on This and That

So many body parts are out of whack that it’s hard to know where to start.

Retina Tear:

A retina tear in the right eye was repaired by laser two weeks ago. Yesterday I was back for a follow up to make sure it was healing well (it is). It’s been hard to keep my head up when I have cats to tend and just getting in and out of my chair presents challenges. But I’m happy that what I was able to do was enough for the doctor to be pleased. I am feeling like a slug, though, after not doing NuStep or much else for two weeks.

Blood Clots:

I also had a follow up with the vein doctors about my blood clots, after yet another leg ultrasound 10 days ago. The scan report said I only had one chronic thrombus in the thigh and nothing in the calf, which didn’t match what the one done in the ER said three weeks before. But the vein people read the scan differently and said that yes, there is a second chronic thrombus in the calf. Apparently it’s not likely that either clot is going away but they will pare down to smaller little webby things on either side of the vein. At least that’s what I understood her to say.

I’m on blood thinners for life, which I expected. Xarelto is wicked expensive but so is Eliquis, which is the same medication class as Xarelto but you take it twice a day instead of once a day. That’s easier and I already have it, so we’re sticking to Xarelto. If I go to the dentist or need to have another kind of procedure, I’m to ask that provider what they want me to do about the blood thinners. Most times I can skip a few days without going into great risk, but a longer time off will require me to get a “bridge medicine” to take until I can take the Xarelto again. Whatever. I’m not to make assumptions or read Dr. Google for answers, but just ask the providers. When in doubt, need more info, or another clot appears, I’m to call either the P.A.’s cell phone or the general number and ask the answering service to page the doctor on call.

Shoulders:

The shoulders have been messed up for months from rolling the manual chair around. The TotalCare therapist who was here as part of the power chair process told me she thought I had rotator cuff problems which seems quite probable as I assess what hurts. Reaching hurts. Rolling hurts. Sleeping on my side hurts. Being attached to my body hurts. Inside the armpits hurts, too. My aide is giving me regular massages which hurt in a good way, and I’ve started going to Chair Yoga for stretches – but I have to be careful about my head position because of the retina tear issue. It may be time to go back to PT for shoulder help.

Miscellaneous:

I’ve had a deep chest cough for about three months. No fever, minimal drainage, facial pain. Splitting headache much of the time. Leg spasms. Right ankle that rolls. Left thigh has Meralgia paresthetica, a disorder characterized by tingling, numbness, and burning pain in the outer side of the thigh – another nerve thing that first popped up six years ago. It’s fun. Not. I’m off to the pain doctor next week and my mandatory 2-month drug screening because he gives me the good stuff. Although I have SI joint pain on both sides, I don’t think I can have an injection to help because of the blood thinner. But we’ll talk.

Power Chair:

All the paperwork was sent to insurance yesterday. We’re not sure if they will pay for the chair, since Medicare bought me the manual chair in 2022. But I have medical complications (think shoulders, ankle, blood clots) since then as well as weight gain. But the shoulders and blood clots are the big reasons they would consider it, plus my doctor advocated for it. I will pay for the power chair if insurance doesn’t, because it could be a huge improvement for me. We’ll see.

Medical Billing:

I have great insurance – Original Medicare A&B, with Plan G supplement, and Part D prescription coverage. Then I went to the hospital on January 1st, the day that deductibles zero out and you start again. My Medicare Part B deductible is $226 for 2023. The hospital bill was $20,214 plus assorted other physician billing for their very limited time with me. Okay, sounds good. Medicare A paid $1,600 of the hospital bill. Everything else is going to Mutual of Omaha for Part B coverage which restarted on January 1st. All of those claims hitting them at once meant that everything was initially denied since I hadn’t met my deductible. Except I actually paid the first of those bills ($208) on January 2nd using my cell phone. Since then I’ve paid $160 to the eye doctor and $680 to assorted hospital stay doctors. I know I’m responsible for $226 of the combo of things so someone is going to owe me a pot of money once they get caught up.

I have a confession to make

I’d rather use the wheelchair than walk.

It’s not that I can’t walk; I can. I just prefer the chair even with the strain on my shoulders and wrist. I feel safer and can do everything I need to do, and feeding and cleaning up after Ellie and Emma are just easier when I’m lower to the ground and don’t have to balance.

Around the apartment I can manage with the walker, except I can’t wear the AFO’s to use the NuStep to exercise, and changing shoes all the time is a real pain. If I had to choose between walking and NuStep, the NuStep wins every time. It works my legs and upper body, plus I stand up all the time and do “dynamic standing” (which just means doing things while standing) multiple times a day.

I also am having problems again with the right ankle. Yesterday there was a lump the size of a golf ball just below and to the back of the ankle bone. It didn’t hurt and was probably fluid but it didn’t like being squished in compression socks and AFO’s. When I did walk, the inside of the ankle had sharp pangs of distress. I don’t think it’s sprained but what do I know. It might just not have recovered from a sprain I had a few months ago. We’ve been very careful with the right leg since it had a blood clot (now two of them).

I feel a bit like a failure preferring the chair to walking, but I know I can manage it safely on my own because I’ve done it for months. I will continue to do at least some walking but will try not to beat myself up for not pushing myself to do more.

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.

Power chair in my future

January is my target for starting the process to get a power chair. Doing it in December made no sense, what with offices shutting down for the holidays and businesses stressing to get through year end on December 31st. I don’t want to risk this getting lost in the cracks. After all, I’ve seen MY office at the end of the calendar year and know how paperwork piles up.

I need this chair more than ever. I put off getting one at first because I didn’t want to believe I’d need it; my goal was to not need any chair much less a power chair. Those were for people who couldn’t walk. Well, hmmm. I can walk some but it’s not likely that I’ll ever be able to walk from my apartment down to the dining room or the mailboxes or auditorium for activities. And in late September, my surgeon was clear that I’m not likely to get much more mobility back than I have now. It’s okay, I can live with this. But it will be so nice to be able to get around more and more easily than I do now.

One of the local DME providers told me that all of Meadow Lake counts as my home, not just my apartment, especially because I do need to go a distance to get to the dining room. Plus I’ve had a sore (and sometimes stabbity) shoulder for at least six months. It never seems to get much better and hurts when I roll around with the manual chair. Somewhere in there I did something to my right wrist and thumb joint which also hurt. Add in that I’ve fallen twice in the last year, and getting a power chair seems like a necessary step and we can make a medical case for Medicare, which will usually pay for a power chair when there are medical reasons for the change.

The application involves reams of documentation – naturally, since we’re talking about the government and insurance – and I’ll need a face-to-face visit with my doctor within 30 days of the application. Telehealth visits are much easier but I can make it work. I’ll check with the DME company about next steps and then make an appointment for early January.

I’m not completely sure how you actually get ON a power chair but someone will explain it and show me. I can transfer to chairs and the NuStep and a car, so I’m sure it’s not hard once I figure it out. There are more scooters here which look like fun for those who can use them, with cute little baskets in the front to carry stuff. People who use them can walk from where they park over to their table or wherever they’re going. A power chair is a wheelchair with nothing in front of you, powered by a joystick. You need a walker, cane, or manual wheelchair to get to and from the power chair. I’m not at all sure how you carry things except the ways I do now, sometimes in a Trader Joe’s bag with the handles in my teeth. Not very sanitary but it’s effective.

January 2022 brought me my NuStep. Now, a year later, I’m ready for a power chair, something I never thought I’d want or use but now am looking forward to helping me get around more easily. I’ll use my study to park and charge it out of the way of the manual chair or my rollator. No matter where it goes, I’m sure the cats will decorate it with fur in no time.

Aches and pains and GI problems

These are not the best of times. No, not for any wheelchair/foot/AFO problems. Because I have a headache, very upset stomach, diarrhea, and a sore/stinging pain in my wrist going up my arm. And my shoulder, too. It’s too many things.

I can’t sleep in the bed tonight. I need to be more vertical in case I need to use the emergency basin. Which means no CPAP because it’s in the other room. I also can’t take the pills I usually take at bedtime because I’m pretty sure I’ll bring them back up in no time. So I’m in my new chair with a robe over my legs and feet to keep them warm, expecting Ellie to jump up and make biscuits and keep my company for a while. The basin and towel are near at hand, along with a bottle of water.

There are multiple Covid cases in our building, including some folks on my hall. I don’t think what I have is Covid but if I still feel like crap on Monday, I may get tested just to be sure. It’s a miracle I’ve gone this long without catching it. I’m double vaxxed and triple boosted which just means I’ll probably have a lighter version of it, not that I won’t get it at all – if in fact that’s what’s going on. It’s probably just a bug.

The wrist thing is more of a problem because I use the hand, arm, and shoulder ALL THE TIME to roll or use the walker. I have a brace/wrap thing on it for support and guess I just need to give it time, ice, and Tylenol.

I want my mommy.