One Year Out of Rehab

I’ve been out of residential rehab for a year this week and am so happy to be home, living my life as independently as I can (which is most things). I’ve learned how to adapt to things that seemed impossible when I first got home, and others may be time consuming but very doable. They seem like small things – taking a shower, changing the sheets, putting on AFO’s, making cookies – but each was a major challenge. But I live here independently with my floofy girls and do more than just worry about whether I can stand. I have two more weeks of PT working on my inflammed shoulder and then I’m on my own again. I’m so ready.

Walking:

For the last 2 weeks, I’ve been walking with a rollator in physical therapy. Right now it lives up in PT so I’m using my regular walker at home and to my surprise, I’m finding the rollator to be easier to use. When I tried using it a year ago before I was discharged from rehab, it was a disaster. My legs are much stronger now and my rollator is appropriately sized, so I feel stable. I also know how to use the brakes to keep the rollator from flying away from my feet. I’m easily walking about 150 feet using it which may not sound like much but it means I know I can handle it in the apartment with shorter distances and I feel confident about bringing it home to use on my own. If I need to, I can hire someone to walk with me for 30 min a day when I first start using it here.

Sleep:

My sleep has finally turned around. I’m making myself stay up longer in the evening, which seems to have eliminated my “get up in the middle of the night to pee” problem. I use my nifty flexible “bed ladder” attached to the bed frame to roll over so I can sleep on my side, which eases lower back pain. I usually find myself on my back by morning, but have figured out how to set the adjustable Sleep Number bed to be comfortable and supportive. And best of all, my CPAP problems were fixed by adjustments made by my DME provider so I’m getting plenty of air. After months of short nights mostly spent in the chair, I’m now getting 8 hours of sleep and have plenty of energy during the day.

Blood Clot:

Two ultrasounds in early July found a blood clot in my right thigh. It’s a chronic thrombus or DVT which means it’s been there a while and has hardened and attached itself to the femoral vein from above the knee almost to the groin. Yup, it’s big. They did the ultrasound in the first place because my leg and foot were swollen and super tight. The doctor explained that, because of the clot, the blood couldn’t get up the leg through the narrowed vein. What made it swollen wasn’t water retention, it was blood. They put me on blood thinners to dissolve the clot, though it could take 6 months for it to go away completely.

Three months later, things have improved. Two follow-up ultrasounds show the clot is still there, but my foot looks normal in the morning and only slightly swollen at the end of the day. Foot and leg are more swollen if I have to spend lots of time in the wheelchair with my legs down, but even then, the leg “gives” more than it did three months ago and feels more normal. I elevate my legs in my lift chair when I’m home and also raise up the lower part of the bed at night, which all helps. Elevating didn’t really do much before and I’m not sure how much it’s necessary now, but I’m happy to have more normal legs.

Hopefully the whole clot will be gone by the end of the year. I’m thinking I’ll probably need to stay on the blood thinner to be sure another clot doesn’t develop, but we’ll cross that bridge when we get there.

Image credit: Photo 155001899 / Progress © Designer491 | Dreamstime.com

Practicing Self Care

My goal for the next few weeks is to practice self-care. It’s a lot easier to just sit around and complain about the knee and the back and how they’re holding me back. Which they are. But in the meantime, there are things I can do and work on.

Sleep: I haven’t been sleeping well or enough. Whatever the reason, I wake up tired and stay that way for much of the day, which could mean a bunch of things: sick, allergies, staying up too late, uncomfortable bed, stress. But what I think it means is that my CPAP is set too low, meaning I don’t get enough oxygen. Back in July at my annual visit with the sleep doctor, my air pressure rate was decreased from 13 to 11. We thought that, with the weight loss and sinus surgery, it was too high. I think we pushed it too low. So I made an appointment to consult again and have it adjusted.

I also spend too much time reading after I get to bed, and get up at 5am to give myself time to wake up. Maybe I need that because, duh, I’m not getting enough sleep. So I’m making a commitment to turn off the light at 9:30 p.m. and to add 15-30 minutes to my alarm so I get a little more sleep at that end, too. I’m also considering putting coffee back on my food plan. I stopped drinking it when I got on Noom because I didn’t like using that many calories on creamer and didn’t like the coffee without creamer. But they are my calories and I can do what I want with them, and I miss the taste and the ritual of coffee – with creamer.

Cleaning. I hate cleaning. I like having things BE clean, just not doing it myself. I had a house cleaner who came every 2 weeks until just before Covid when she had a double knee replacement and then retired. I’ve been doing my own cleaning since then and I still hate it. Today I called The Cheerful Cleaning Company again and am trying to set up a regular cleaning schedule. They did my post-construction deep clean and were amazing. It’s not cheap and it’s actually a luxury, but I need this.

Church. I work in a church that I no longer attend for worship, having joined a local Episcopal Church a few months ago. My problem has been actually getting there in person because I found myself doing tech support for Work Church on Sunday morning, which is now doing Facebook Live as well as Zoom for streaming Bible Study. I’ve reserved a spot for in-person church at Worship Church only to not actually go. This week I delayed making a reservation until today. I’m going to the 11:00 a.m. service this Sunday, which means I can be home while Work Church is doing technical things in case there’s a call, but I can still get to my own Worship Church. I need it for grounding and learning my new community.

Hair and Toes. I put these in the same category because I try to “do” them on the same schedule. I love getting a pedicure because I sit in that fancy massage spa chair for an hour with little kneading action on the back. Plus someone else spends a lot of time working on my feet and then they feel better and look beautiful. I’m currently out of whack on my “doing them on the same schedule” plan but am going this afternoon for a haircut. Toes were done last week.

Massage. I have two gift certificates for a body massage but have been holding off because of covid concerns. It’s been 9 months since I’ve had one and that’s a very long time for me to go. My body is off balance because of the back and knee problems on the right side and my muscles are tight knots strung together like beads on a chain. This week I’m calling both places to find out their cleaning procedures to see how safe they feel, and if they are acceptable (and I’m picky), I will make an appointment. By the end of the week.

Weight loss – yeah, I know, I shouldn’t have put this last. No one can do it for me and it’s important. But it can’t be the only thing in my life. I’ve spent too much time obsessed with food, diets, eating plans, calories, counting, tracking, measuring, etc. I’ve really enjoyed just being essentially in one place for almost 2 months. I don’t want to stay here, but right now it feels good. When I’m ready to buckle down, I will. As long as I don’t forget how I got here.

Actually, looking at this list shows that my idea of self care is mostly having someone else do things for me. Not that there is anything wrong with that. But there are things I can and need to do for myself. My big one is to remember my goal of preparing, compiling, and publishing genealogy books for each grandparent’s line that include full size images of original records such as census pages and church documents. The book I did for my brother 2 years ago omitted these because no one really cared except me. But as a research tool, something that is a “brain and record dump” of my genealogy program, this is a huge goal. I’ve been working on the family lines for 50 years and know that it may be a long time, if ever, before anyone else in the family is interested in picking it up. So I want to get as much out of my head and my computer into a printed form. It will not be finished by the end of December, but I’m again making progress.

Monthly Check in

On the first day of the month, I take measurements as well as my daily hop on the scale. I only track bust, waist, hips, and calf because they’re easy to find. I am posting here because I want a place to keep track of some of the changes.

Highest weight: 343
Starting Weight: 310
Current weight: 256.4
Weight lost to date: 53.6 lbs
Goal Weight: 185

Inches lost: 20″
Bust: 4.5″
Waist: 7″
Hips: 6″
Calf: 2.5″

Starting Clothing Size: 32/34
Current Size: 20/22 (sometimes 18/20 or 22/24 depending on brand)

Starting Shoe Size: 10EEEE (I know, it’s ridiculous and hard to find)
Current Shoe Size: no clue because I’m wearing Birkenstock sandals

Although the scale hasn’t moved much in the last month, I realized in looking at my monthly records that I’m down 12 lbs in the last two months, which is a very respectable pace. My pattern really is to go for a month or so without much change, then drop a bunch and repeat. Sometimes it helps to be hit over the head with a reminder.

It’s also quite probable that being completely exhausted isn’t helping. I haven’t been able to use my CPAP for 5 weeks while my sinuses heal from surgery. The sleep doctor told me at my visit last week that my sleep apnea is more than severe: at my sleep study in 2016, I registered 109 apneas/hour, something I had completely blocked out. Eeeeek! He was concerned about me not using the CPAP even though he understood why. I see the surgeon tomorrow and the only thing I care about is getting the green light to go back to the CPAP and SLEEP.

My goal for this coming week is to get my sleep pattern back to normal. I go to bed a little after 9pm and read for a short while before turning off the light. Usually I can go to sleep quickly. By adding the CPAP back in, I should be able to stay asleep and wake up refreshed and with enough energy to get back to more regular exercise as long as the knee and back cooperate. Getting older is not for sissies.

Life Beyond CPAP

My CPAP rubber parts have been soaking in white vinegar/distilled water for a final cleaning before I pack the whole thing up to put away in the back of my closet.  The machine itself cost over $1,300 so I’m taking very good care of it, just in case I need it again at some point.

But for now, and hopefully forever, my sleep apnea is gone.  I had a home sleep study that showed my apneas have gone from 38/hr to 1.3/hr – and normal is under 5/hr.  I only snored for 3 minutes the whole night.  I was happy dancing to hear the word that I’m normal and no longer need the machine to help me breathe at night.

Much as I didn’t like being tethered to my ResMed CPAP, not using it has been an adjustment, one I didn’t really expect.  For one thing, it’s awfully quiet in the room.  Roomates told me at conferences that the machine didn’t make that much noise, but as the masked person with the elephant hose, let me tell you that there is a persistent wooooshing sound in my ear as the air moved.  It was actually comforting and after getting used to it, the sound helped me sleep.  I think I’ll get a “white noise” sound machine to do the same thing for me now.

My special CPAP-friendly pillow is in storage and I’m adjusting to being able to move my head without the mask shifting out of position or the hose wrapping around my neck and strangling me.  Well, not really, but sometimes it felt like that.   Now, though, after several months of restless sleep and fatigue, I wake up feeling rested and having had deep, vivid dreams – which means I’m getting REM sleep.

One of the things I had heard before my surgery was that bariatric surgery patients – both bypass and lapband – often found that medical conditions often disappeared on their own.  Things like diabetes, high blood pressure, and sleep apnea.  So I had suspected that my sleep problems, which began acting up 2 months after the surgery, were related to getting a lapband.

Losing weight can also help the apnea go away or at least be more minimal in intensity.  But I’ve been almost this low before one year after I got my CPAP, and all that happened is that my air pressure were adjusted slightly.  This time, it’s quite different.  I’m more than ready for it.

Random Sunday Things

Apartment update — throwing around “my brother the lawyer” was very helpful in working with management.  They are implementing his advice, at least most of it, and have said they are commited to doing the repairs to my satisfaction.  Which is a big improvement over what they said on Wed.  Friday they chopped out the wet wall and baseboards and patched in new, covering a much bigger area than I expected, and Monday I’ll get paint.

I don’t know what’s happening with the carpet but they ripped out enough carpet pad that I know SOMETHING is happening.  Whether that ends up being both whole rooms or just pieced sections, I don’t know.  I’ll probably have to move the poor kitty to the study again on Monday so she doesn’t get in the middle of the noise and activity and freak out.  For now she’s curled up on her little footstool next to mama, making us both happy.

Friday I had an appointment with the sleep doctor, the first since I moved last summer.  Although I’ve been on CPAP for over 3.5 years, I’ve been having problems in the last year waking up in the night and not waking up as refreshed as I did when I first got the CPAP.  Since I am an expert diagnostician with a medical degree from Google, I was pretty sure that my air pressure needed to be adjusted up higher.  I’ve gained back so much weight since the pressures were set that it was a good bet, and the doctor concurred.

What was annoying was the conversation about my weight problem.  Did I know that it would be helpful for me to lose weight and that lowering my BMI would have an effect on my required air pressure, not to mention improve my health?  Noooooooo, no one has ever mentioned it.  Would I be interested in information about weight loss program in a neighboring town that only costs $1200 for personalized plan?  No, I wouldn’t.

It makes me so mad that they tell me this every time I see a doctor, even when I volunteer up front that I know I have a weight problem and that it’s not helping.  See?  I’m Self Aware and have listened to people tell me in the past that I am a failure and need to work on this and then everything will be fine.

I grumbled loudly about it to the sleep tech who did a mask fitting after I saw the doctor.  She’s doing WW herself and we commiserated about it.  But then she did say that the doctors have to tell us if there is a weight-related factor to any physical problem, because otherwise they are open to liability for NOT having said anything.  So I should expect to keep hearing it.  In a funny way, that did help.  It’s not pointed at me for being stupid and a failure, it’s just doing their job.  I can listen and get upset, listen and get motivated, or listen and ignore the stress levels.

We also talked about WLS and the effect on sleep apnea.  Her experience with patients is that there’s a big improvement quickly, not just from the weight loss, although that’s certainly a major factor.    I may not get to a place where the apnea is completely gone but it could get low enough that the CPAP isn’t really needed.  It would be great to not be tied to the hoses and masks every night.