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.

Unhappy toes

Sensation below the right knee hasn’t been normal for a long time now. There was nerve damage that hasn’t recovered and probably won’t, at least not anytime soon. When I feel odd things such as pain under the ball of the big toe, I’m told it’s nothing more than nerve damage and not to worry. Oh, and let’s not forget the “sponge-y feet” that sort of squish on the bottom when I walk. Odd but normal for neuropathy.

Now my toes have been acting up. They started curling under a bit in the spring of 2021. That triggered the MRI that finally sent me to a neurosurgeon. My right ankle is still frozen and I can’t flex the foot at the ankle, but I can finally move the toes up and down a little bit. They’re still curling under some and I’ve noticed they’ve been catching on the drain in the bathroom floor which is uncomfortable.

Except my middle two toes are not happy. I can’t feel anything wrong but then, I can’t feel much in the foot anyway. Today when I strapped on the AFO’s and started walking around the apartment with the rollator, those toes started screaming. I don’t know why they hurt but they do. I may need to buy another pair of shoes one half size up to give the toes more room. But I’m pretty sure that my doctor would just repeat that there is nerve damage making it feel this way.

Walking hurts, though, and it’s hard to make myself do much of it when every step hurts.

[Note – the picture is of happier toes when I could still wear my pink Birkenstocks, now alas in my past.]

More PT Ahead

My right shoulder has been killing me. Isn’t it odd that all of the aches and pains and sprains and tingling – even the blood clot – are happening on the right side? Very lopsided. In any case, the physical therapist was here this morning to do an assessment of the shoulder/arm in response to a PT order from my doctor. He also assessed the ankle; the order for that came through when I sprained it, but was postponed when they found the blood clot. It’s been unstable so it got assessed and I get more PT.

There seems to be a nerve impingement as well as super tight muscles. Right side testing was considerably shortened from the normal left side, so PT will help. I got three stretching exercises to do in the morning and will go to PT twice a week for some indefinite time, because we’re also going to add in some work with the legs and walking. Chris was impressed with how much walking I’m doing on my own, so that feels good and as though I’m not slacking off somewhere. Pain needs to be heeded, and pushing the shoulder pain could result in other problems for me.

Also got instructions on how to shrink my giant abdominal hematomas and clarification of why I’m not to wear AFO’s on the NuStep. Wearing them supports the ankle but it can disguise any rubbing of the foot in the brace/shoe that could cause more problems. No one explained that before, or at least I don’t remember it, just that they didn’t want me wearing AFO’s on the machine. Got it. I think I need to reverse my shoe plans so the AFO’s go on first whether I think I’m walking or not, since they support the ankle. Mid-afternoon I’ll take them off and put on the zipper shoes to do the NuStep. Or not, if it’s not a NuStep day. I’ve been doing that backwards and I’m more likely to make myself go walking if the AFO’s are already on.

I’m not reluctant to walk. The problem is the cats, who want to go out in the hall with me when I go. I’m slower than someone not using a walker (or wheelchair), and they could easily get past me into the hall. So I try to plan my walks when they are flaked out asleep on the porch or in their boxes or other sleeping places. If they don’t cooperate, it makes things harder, and that’s when I wait and sometimes the walk just doesn’t happen. Life is like that.

Today’s Telehealth Visit Summary

I had a telehealth visit with my primary care provider today (who doesn’t look like this image). In advance of the call, I sent email with lists of things on my mind so she would be aware of them and so we would cover everything in our limited time. Here’s a summary of our conversation so I remember later what was said.

1. Got meds for a urinary tract infection (UTI). Should clear up within the week.
   
2. Got a prescription for Baclofen to help deal with my leg spasms that ripple from knee to toe on the right leg. They’ve done this for months but regular muscle relaxant doesn’t really help because the problem is neurological, not muscular. I found out about it from my Facebook group for spinal cord injury rehab, which has been a great source of information and inspiration.
   
3. Shoulder pain associated with nerve tingling in the upper arm is probably caused by overuse with my chair and walker. Got a referral to PT for therapy and ultrasound treatments for the shoulder, which will be expanded to include more PT for my leg. I need help learning to use the rollator walker safely after the arm is better. I’ve been too lax in my upper arm strengthening. As the arm heals, I’m back to using my weight bars and therabands.
   
4. She believes my surgeon was too gentle with me about the extent of my limits and what I’m going to be able to get back post-op. It made sense to not hit me hard with bad news last August when I was already going through a hard time, but now that I’m a year out from the surgery, I’ll be talking plainly with the doctor at what will probably be our final visit. Whatever he says, I know I have to keep exercising and walking as much as I can, but a wheelchair is probably in the cards long term. It might be time to consider a power chair but I want to give the rollator a good try first.
   
5. Lower back/SI joint pain is being addressed with pain management. I can’t get an injection while I’m on the blood thinner to dissolve the existing blood clot. I’ll see that doctor in 2 weeks.
   
6. Advised to stop taking my arthritis med because it is a blood thinner and shouldn’t be combined with Xarelto. The prescribing doctor didn’t tell me this so it’s clear they didn’t look at my current meds list. Why did they ask me to write it all down for them anyway? No anti-inflammatory will mean arthritis pain to deal with. Should be fun, right?

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.