Look what’s finally here!

My shiny red power chair arrived this morning. I got a call out of the blue asking me what time they could deliver it, which was how I knew that the process was successful after 4+ months of paperwork and phone calls. It was denied by insurance the first time, and the appeal was also denied until my doctor sent a few extra things, and then bam! It arrived. It needs a name but I have time to come up with one.

It’s beautiful and I don’t know it works yet. I do know that the seat turns 90 degrees so I can climb into it – except it’s really high for me so I couldn’t sit all the way back in the chair. And I also couldn’t get my right leg up on the footrest. I lurched around in little bursts of power trying to figure out where I had room for both the power chair and Phoebe, the manual chair, so I could get on and also have a reasonable chance of returning to the same place.

Once on the chair, I headed off to the hallway to take an inaugural ride down to the lobby and ride around a bit. Except I couldn’t figure out how to close the door to my apartment, which is quite important since the kitties would really love to come with me. Anywhere. My neighbor closed it this time, but I’m definitely going to need to figure this one out – both when I leave and when I come back. I’m smart, I can do it. I just need to … figure it out.

I really really need to find out how to lower the chair height. The delivery guy didn’t have me get on the thing when it was delivered which obviously was the time to get it figured out except I didn’t do it. According to the owner’s manual, this chair is supposed to have an elevating seat which should let me reach high places, but I’m not trying that until I know how to make it do more basic things.

But the good news – the great news – is that the chair is finally here. Once I can motor around easily, it will be a life changer. Until then, watch out so I don’t run over you. Trust me, it could happen.

Why so many things?

Sometimes I wonder why my body is causing me so much trouble. The quick answer that a doctor will tell me is that it’s because I’m morbidly obese. To medical people, everything that goes wrong with a fat person’s body is because of the fat.

Most of the time, though, I think about what and not why. I can only face one thing at a time and try to be pragmatic with a good sense of humor. Being angry or weepy doesn’t fix anything even if it does release some pent up stress. I research new problems thoroughly on Dr. Google, focusing on the Mayo Clinic website but also reading articles in PubMed or other scholarly resources as long as I don’t have to look up every other word. I walk through the tests and problems knowing that God is with me, and that sometimes the answer to “Help” is just that: to be with me, not to fix things. I accept that “No” is an answer.

I also realized soon after everything crashed for me in 2021 that God may not be trying to teach ME a lesson through these difficult things, but to use me to reach others. I try to be straightforward and honest about what is happening with my body here on the blog, and I also know that people watch me rolling around in the chair. They see me have to take the long way around to go from points A to B because the easy way is too narrow, or know I just can’t go certain places because the space configuration doesn’t work or the bus chair lift is broken.

But they also see and read that I’m still doing things and don’t hibernate here in the apartment just because my legs don’t work right. I’m out eating in the dining room with friends, or wheeling into the library to work on our collaborative puzzles. I watch movies, do exercise classes, chair the Dining Committee, and am now about to take on the community newsletter. I bake cookies and dye my hair pink. Being differently abled doesn’t mean I sit around like a vegetable.

There a lot of things going on lately, though. My leg is still swollen and tight, with a puffy foot and hugely swollen right thigh. The ankle is bad and I have two blood clots. My shoulders and upper body hurt most of the time, and the wrists are also sore. I had a hospitalization and a retina tear. Oh, and Covid. Have I mentioned that I can no longer feel my right heel? And I’m also still morbidly obese.

Let’s be clear: I want to know what’s going on with my body, but that doesn’t necessarily mean I want to do anything to fix the problems. That depends on what and where they are. I don’t have a death wish, but I am not afraid of death or what comes after. I don’t know that any of my current problems put me on that path, but they are a wake up call to be sure that my affairs are all in order and organized so that my family can find what they need. No one organizes quite like a cataloger, so that one’s a sure thing.

Reclusive, depressed, or sick?

Nope, just SAD. I finally figured it out and ordered a light therapy lamp. I had one when I lived in New England and I know it will help. I wrote most of this post before I figured it out, though 🙂 Symptoms of Seasonal Affective Disorder (SAD) include everything I’ve been feeling for the last 6 weeks …

Since coming home from the hospital, I’ve spent a lot of time alone in the apartment. Well, alone with the cats and the TV. I’m not really interested in hanging around people and being social. My friends here are lovely and I enjoy their company – but not now. Since the retina tear, I’ve also been basically sitting around because I’m not supposed to do anything strenuous and to avoid having my head down. The quiet time alone feels like vacation.

I’m not sitting around moping or feeling sorry for myself. I dose off in the chair frequently and am really tired all the time even though I’m getting lots of good sleep at night. But I have that deep chest cough and facial pain, which usually means a sinus infection. I’ve had both for weeks. Am I depressed? Maybe. Actually, I know I am and I’m already on an anti-depressant which has helped enormously.

My shoulders hurt just being attached to my body. After propelling myself around on mostly carpeted hallways, my arms are tired and the shoulders hurt more, and my legs are often throbbing from being down for hours instead of elevated in my lift chair. But mostly it’s the idea of having to get myself back home after being out for something like working on the community puzzle in the library or going to Bingo or exercise class that tires me out before I even go.

I don’t feel lazy staying at home. It’s really just taking care of myself. I can sometimes find someone who can help me push my way home again – but so many people use walkers or scooters and can’t actually do much to help. So it’s up to me. I’m more than ready for the power chair.

And that chair will let me get outside in the sunshine much more easily than I can do now. I can’t wait.

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.