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?

Stray Genealogy Bits and Pieces

I have two boxes of pictures and decades-old printouts and notes on assorted people in my tree. I’ve been working on my lines for over 50 years and some of this stuff dates from the early days of my research which has been either confirmed or thrown out the window by subsequent research that’s properly sourced. Many of the pictures are duplicates of things I’ve already scanned, filed, and added to my tree. Others aren’t but they’re of people I barely know – and if I don’t know them, I know my brother won’t have a clue who they are. And we’re the only ones left.

I find myself wondering why I’m bothering to review all this stuff again. If the boxes disappeared, no one would know what went with them. I’m not sure I would know after all this time. And I’m not sure that anyone would care. You have to know what they are and whether they fill missing holes to care. I’m the only one who knows what they are and even I don’t care about most of it.

So why am I doing this? Really, why? Is it not enough that I have better images already scanned and sorted? I understand the value of all the scraps of paper that have given me genealogy treasures in the past. And it’s not THAT big a project to go through them all, search online, check files, etc. to see if I already have these pieces in a digital form.

But I just don’t want to do it, which is why they’re still sitting in their folders and acid-free boxes waiting for me to look at them again. I took the first step and moved everything out into the living room, but I still don’t want to do it. Maybe tomorrow.

Sleep – what’s that?

I’ve done most of my sleeping lately in my lift chair. It’s reasonably comfortable but the legs don’t go up as high as I need them to elevate given my edema and blood clot. My adjustable Sleep Number bed is comfortable but not when I’m flat on my back, and it’s not so easy getting up to pee multiple times a night. Because I’m now on Xarelto, that’s happening about every 2-3 hours.

Let’s talk about what that involves. I can’t go to the bathroom with the walker unless I have my AFO braces and shoes on, which just ain’t gonna happen in the middle of the night. So I keep the wheelchair by the bed. First I park the chair, stand, and grab the walker by the bed to help me with balance as I pivot and turn to sit on the side of the bed. Then I position a therapy pad between my feet and put them on top to help me push back in the bed so I’m not teetering on the edge. I use my leg lifter to swing each leg up one at a time, then pull the covers over me. And then I grab the bed ladder and use it to pull myself over a bit more in the bed. Last, I use the bed controls to raise the feet up as high as they go and the head up a little bit, and use the app on my phone to adjust the bed pressure level. Then the lights go out.

I’m afraid of NOT responding when my body says “Hello! Time to go pee!” I have to reverse all of the above steps, and use the flashlight app on my phone so I can see what I’m doing without waking myself up completely. When I use the bedside light or overhead light, it might as well be morning. Plus the cats hear me moving and come to investigate, which doesn’t exactly help. If I don’t adjust the bed back to 100, it’s like sitting in a hole when I try to go back and swing my legs up. So yes, it takes all those steps – which I have to do all over again to get back into bed.

So most nights lately I start in bed, then move to the lift chair after I get up to pee the first time, because it’s easier to get up from the chair than the bed. But without the legs being high enough or my CPAP available, I sleep lightly if at all, leaving me dozing in the chair during the day and really, really tired.

On the other hand, it’s still so much better than a year ago when it took two people to get me from the bed to the bedside commode, after using the call button and then waiting for the CNA to find a second person to help. I had to wear the hated gripper socks; now I can be barefoot which saves time and steps. I wasn’t strong enough to get my legs on and off the bed without help, and I couldn’t clean myself after because of back surgery limits on twisting and turning. Plus I was very uncoordinated navigating all this newness, full of fear that this would all be permanent.

But it wasn’t. Time and practice and therapy made the difference. It’s good to remember where I was a year ago, to see the difference and to see how “normal” my life actually is even with my limits. And as annoying it is to still have to do all those steps to get in and out of bed, I can do it and do it myself in my own home. I sleep better in the bed and it’s worth the effort to get myself there.

Vascular consult update

I had another leg ultrasound today. The good news is that things didn’t get worse and nothing new showed up. The clot/thrombus is still there and it’s going to take time to dissolve. My leg feels a bit softer when you poke a finger into it, which is an improvement.

Best news is that I don’t have to continue Lovenox shots. Thank you, God. Really and truly, thank you. I’m back on Xarelto once a day in a teeny tiny little red pill taken with dinner. No Lovenox should mean no nausea and better sleep quality as well as not being a pin cushion.

Strange news is that my belly actually has two large hematomas as well as some smaller ones. Everyone was quite impressed by their size. The one on the left has been there for 3 weeks and does seem a bit smaller, but it’s still quite hard. The one on the right side, up closer to the bottom of the bra, has been there a week and is 6″ x 4″, and quite angry around the margins. I’m to use a heating pad 4 times a day for 20 minutes, and ice for the same, for a week before checking in again by phone. If it’s not getting any smaller, she’s going to send me for a CT scan.

There really isn’t any bad news, which is good news.

My poor tummy

I’ve been injecting my tummy with Lovenox twice a day for the last 30 days as prescribed by the vein specialist. I’ve never done injections before but didn’t think it would be all that hard. After all, I’d already been through two months of once-daily Lovenox shots when in rehab last year, and while I didn’t like it, it wasn’t hard.

No one told me to expect to get hard lumps at injection sites. Bruising, yes, because I’m injecting blood thinners and the bruises are blood bruises. But not the lumps. And now my tummy is full of small hard spots and two really swollen ones on each side that are at least 4-5 inches long and 3 inches wide, hard as a rock and very sore around the margins. I feel as though an alien is poking out through the stomache.

Tomorrow I go back to the vein guy for another leg ultrasound to see if the clot is actually dissolving, which is of course the goal. I know it’s not gone because my leg is still swollen, though it might be a bit better. But we are definitely going to have a chat about Lovenox and what other options I have. Because there has to be one and I do NOT want to keep stabbing myself with needles.