A to Z Challenge 2020: Theme Reveal

I don’t know how to categorize my topic. It’s about health, emotional, mental and physical. It’s often about family. It’s personal. It’s definitely about a particular lifestyle. It’s about caretaking.

Lots of us are caretakers these days. We care for our children with disabilities, our aging parents and family members with dementia. Some of us work in healthcare institutions and give care to patients of all ages and conditions. It’s a special calling, a special task.

This year I’m using the April A to Z Blogging Challenge to share my own experience, my stories, my thoughts and feelings about caretaking. I am a retired RN, retired in the sense that I’m not getting a regular paycheck, but I’m still learning and doing, in the field of caretaking.

I live with my husband, diagnosed with Lewy Body Dementia in 2018. I’m also across the yard from my mother, a courageous 87 year old, and within a short drive of my uncle and aunt, both in their 90’s. Like so many others these days, I have a friend and a dear sister-in-law who are fighting cancer. While not giving daily care to all of these people, I’m often involved with their needs and I do care.

I’m interested in hearing from others about their experiences, since I have already found that caretakers, as a group, have much to share and teach each other. These posts are an invitation to all who read to contribute and connect. The A to Z format doesn’t cover all possible topics of caretaking but serves as a starting place for discussion. Please join me this month as we explore being caretakers.

There is a moral task of caregiving, and that involves just being there with that person and being committed. When there is nothing that can be done, we have to be able to say, “Look, I’m with you in this experience. Right through to the end of it.” Dr. Arthur Kleinman

Hand Surgery – 3 Months and Counting

January 12, 2020 (Don’t you love typing that year? So easy.)

It has been, literally, months since I had CMC arthroplasty (basal thumb joint surgery) and I want to update the world of arthritis victims on my progress. This is such a common surgery, and any of you with pain in that thumb joint will consider it at some point. Maybe this will be useful for you.

Last week I had what will probably be my last follow up visit with the surgeon. It will be three months since surgery. If I had to say one thing that stands out in this experience, it’s this – I never expected it to take this long to heal. Outwardly, there is no problem. Inwardly, in the wrist where all those little bones and tendons have to get around and through each other, there is still swelling, stiffness, weakness and pain with some movements. But, I am told this is normal and it will continue to heal and get better in the next three months. Tendons take a long time to heal.

I have been bad. When the cast came off, and the removable splint was put on, I removed it whenever it bothered me. It bothered me a lot. When it came time for therapy to start, and I told them what I was doing, I was warned that doing things too soon could give some bad results. I did better after that and wore the splint most of the time. It got dirty. It got smelly. It made the nerves on the inside of my wrist burn and I would wake at night with shooting pains going up my arm for no reason I could determine.

My hands are really not this colorful. It’s the camera.

I’m now weaning off the splint. The therapist I saw this week knows my history of poor compliance. She kind of moved quickly through the “very light” and “light” activities (see sheet in picture) because I had already been doing those things and more. Although I’ve probably caused myself more pain by moving too fast, the doctor didn’t think I had displaced any of her work – my hand looked right from the outside and that was comforting. I fully expect the next few months to bring complete recovery of my thumb. I wish I could say the same for the other joints on both hands.

For those problems I am going to try something called palmitoylethanolamide, let’s just call it PEA. It’s a medicinal food, so I don’t need a prescription for it. It is getting a reputation for helping chronic pain from many sources, osteoarthritis among them. The research is compelling. You can read about it by clicking here. There are several sources but one that is known to be reputable, sourced in Europe, is peaCure. I have some coming from Amazon and will certainly be spreading the news if it is helpful. Thanks to Esther in Seattle for the alert on this product.

I don’t think I’ll be getting new hands this side of the grave so I’m planning on taking better care of the ones I have, in any way I can. (Bought a RoboTwist for lids – it works!) Just sayin’…

Vitamins

This was written February 18, 2011 but surprisingly, not much has changed. Our vitamin experiment is in its eighth year. So far, we have both gotten older and are wearing out. This will have to go into the book about the husband…

Have you taken your vitamins today? I haven’t. I’m having a morning cup of coffee. I’m so thankful they’ve discovered some antioxidants in it along with the caffeine. I have probably survived this long because there are antioxidants in my coffee. I can taste them and they are good.

There is an experiment going on at my house. It’s the Grand Vitamin Survival Experiment.

Both Dennis, my husband, and I have read a lot of books about nutrition and have some newsletter subscriptions to Mayo Clinic and several vitamin companies and as a result we do think there are some marvelous discoveries out there – magical things in our foods that were designed to make our bodies function at their peak of performance. I don’t doubt this at all and the evidence of malnutrition is out there for anyone to see. The questionable part is this – are we really capturing that magical element and transferring it unharmed into a pill? And, assuming that, if we’ve already ruined our bodies, will taking the pill help us?

There are so many untrustworthy types out there and 98% of them have a vitamin company… The good thing is, we don’t really have to know if vitamins will help us, we just have to be able to afford them, eat them, and hope they don’t kill us. If we’ve covered enough bases, they might help. This brings me to the experiment.

One of us at my house is covering ALL the bases. The other one of us can’t remember to take vitamins two days in a row. Which one of us will die first?

Okay, I’m the one who can’t remember to take the vitamins. It’s a fear/hate thing.  I “fear” macular degeneration, heart disease, arthritis, osteoporosis, blah, blah… so I think of the bottles of lutein and zeaxanthin up in the cupboard and take them, sporadically. 

On the days when my hands HURT (not just hurt) I get out the arthritis support and pain relief magical elements and take them – also sporadic. Is it merely a memory problem? No, I remember my coffee without any trouble.

 It’s the non-foodishness of them that I can’t get past. If you wanted people to eat something you were selling, would you make it like a small rock, with sharp edges? We spit out cherry pits and watermelon seeds. Why do they think we would swallow these things that leave furrows down our throats, get stuck halfway down and dissolve for the next three hours on the delicate lining of our esophagus? You don’t have to tell me all the tricks either. I’m a nurse – I’ve ground up every pill there is and polluted good applesauce with the powder. That’s the “hate” part when my applesauce gets ruined.

So back to the experiment – Dennis has a supplement/vitamin for every part of his body and every function possible. We have a three shelf cupboard in the kitchen devoted entirely to bottles of pills. New ones arrive by UPS on a regular basis.  It takes a good five minutes to dish them out which he does faithfully a couple times a day. He has to have a special bowl to contain them and I have no idea how he eats them all and still has room for a meal.

And on the other extreme I sit with my cup of coffee and whatever I can eat in the car while I’m driving back and forth to work. Who will survive longest? 

Unfortunately, it’s the cumulative effect over long, long periods of time in which vitamins produce the most difference. WHAT KIND OF EXPERIMENT IS THAT!? I want to know now, or at least in five or ten years.

I’m just glad it’s the weekend and I get to have a second cup of coffee.

He has managed to cut down – most of them fit into this very full box… most of them.

Hand Fashion

Hand Fashion

Removable, with wiggle room, and white which goes with everything.

I had a green one just like this but it didn’t last long.

The ugliest of all, but very utilitarian.

I don’t blame anyone for not being interested in the various splints and casts that can be worn connected with CMC arthroplasty – medical speak for fixing an arthritic thumb joint (although I KNOW some who aren’t interested now will be in the future… just you wait.) I mean to finish this expose for those of you who are interested.

I am now in my second month of recovery after this major reconstruction of my hand. The doctor was fairly accurate in saying I would hate her for the first month. It’s been painful, awkward, inconvenient, and at times depressing. I’ve gotten a whole different way of viewing those with this kind of handicap.

Last Thursday the second of the hard casts was removed. The pin, the one that I was sure was causing most of my pain, was removed. It had worked its way out nearly an inch farther and was lying flat under the cast. At least that made it easy to remove. I didn’t take my phone/camera with me for this procedure. I was glad not to have it when I saw what skin looks like after a month of being wrapped up with no air and no washing. Gross.

I then got fitted for a new splint. It’s plastic that softens in warm water and was molded to the inside of my thumb, wrist and arm. Thankfully, it can be removed by simply undoing Velcro strapping. It is less bulky than the casts. I can wear my long sleeved shirts and my coats again which is great because it’s gotten to be winter up here.

I wish I could say that the pain was gone. It’s not, but the pain pills are. Ice bags have become my best friend. It seems that cold not only reduces swelling, it causes a distracting pain of its own which is much more tolerable than the pain it is covering up. The scar is especially sensitive with a burning pain that I attribute to nerves that are trying to heal. We’ll give them one more month…

I get to start occupational therapy tomorrow, at the crack of dawn. By 7:30 I will be doing thumb exercises which I’m sure will be quite strenuous. The whole imperative of not using the hand to do any lifting or thumb to finger pinching is hard for me to follow. Now that I don’t have to worry about getting a cast wet, and my fingers are more free, I find myself breaking rules all the time. I’m even typing with both hands now, in spite of it being a little uncomfortable.

I go back for another check-up December 19th. I am glad that the worst of this is over, although I’m warned that the second month is still not a “picnic”.

Give Me a Hand, cont… Distractions

November 1, 2, and 3, 2019

Life was going on smoothly with my new, blue cast, for a few days at least. We had a good, but short visit from the North Carolina daughter and another surprise visit from a distant cousin. Events like this are good distractions and I am easily distracted when pain is chronic and below a certain level. And then came Friday, with a totally new distraction.

I had an early morning appointment with the ophthalmologist (tempted to just write eye doctor) and was surprised to see the husband up and reporting to me that his leg had bothered him during the night. He thought it was swollen and felt different. I often don’t agree with his assessments, but I always check to make sure. It did look a little swollen and was slightly warmer. I sent a quick email to our doctor and she recommended we come to the clinic and see what was up. So we were there by 11:30, the husband being examined by a PA.

There was the possibility of a blood clot, a DVT, short for deep vein thrombosis. She ordered an ultrasound of his left leg and we set off down the hall to radiology. Halfway there, Dennis could not go any further. He was leaning against the wall and holding on to the handrail, looking scary. I ran for a wheelchair and helped him sit. He was weak and sweaty. At radiology he was feeling better so the ultrasound was done. I watched the screen as the tech worked and although I find it hard to know what I’m seeing, it was evident that something wasn’t right.

From there we were ordered directly to the ER and met with a whole squad of RN’s. They hooked him up to EKG, put in an IV and started monitoring his vital signs. It didn’t help that his blood pressure was 200/104. The ER doc sent him for a CT scan of the lungs and it showed multiple clots in both lungs – significant was the word they used, as opposed to massive. He was started on anticoagulants and admitted to the hospital. That’s where he spent the next two days until his blood pressure stabilized and his blood thinners had reduced the risk of additional clots.

I don’t remember thinking much about my hand the whole time this was going on. That is not to say that I’m recommending medical emergencies as therapy for chronic pain.

Give Me a Hand, continued

10-24-2019

Ten days after surgery I went back to have the splint exchanged for a fiberglass cast – the next step. The cast tech told me the thing I thought was a suture was actually a metal pin, holding bone and ligament in the right places and coming out of the skin in the shape of an L. Normally they stick out above the skin but my pin had migrated, moved, and was embedded in my flesh. A felt pad meant to keep that from happening had slipped out of place. He didn’t seem alarmed and said that it wasn’t uncommon and was probably due to my being more active. I got another 30 seconds of doctor time and then the head of the pin was pulled out slightly, cushioned with felt again and the cast was applied.

Hmm… there was a piece of metal in that hole.

This cast was less bulky and easier to live with than the splint. But a few days later I was still feeling that burning pain almost constantly.

10-29-2019

I decided to send the doctor a note about the unsatisfactory pain level and it was agreed that I should have the cast checked. It happened that I was going up to the medical complex anyway, for Mom’s dermatology appointment so they agreed to fit me in. Most of our specialists work in a city about 90 miles away so logistics are always in play.

The same tech who put the cast on greeted me with “So, what’s wrong with the cast?”, in a somewhat defensive manner. I told him it was the pin I was feeling mad at, not his cast. And sure enough, when the pretty Packer green cast was sawed off we saw that the pin had rotated again and was making another dent in my skin. The doctor didn’t look at it this time – just told him to put it back in position and wrap it up again. He labored over finding a way to keep the pin out of the sore spot. Vaseline gauze, felt padding and layers of cotton batting went on, covered by the last layer of fiberglass – denim blue this time, which I like better (no offense to the home team). I went home hopeful, but worried because it still hurt from having the pin moved. I was beginning to wonder about the wisdom of putting a pin under a tight cast that will always be putting pressure on it. Does that sound like a recipe for pain?

Such a pretty blue – goes with so many of my outfits.

To be continued…

Give Me a Hand

I realize that I completely dropped the ball (and the story) after the big build up about my surgery. The truth is I haven’t felt much like writing since then. Everything in life has become a one handed task, which makes typing pretty slow. But, it’s now time to complete the record. I just wish someone would give me another functioning hand…

For the record: (typed with one hand)

On the 14th of October, after weeks of anticipation, I had surgery on my left hand to relieve arthritic pain in the thumb joint. The hospital experience was very good, almost amazing. The only thing missing, in retrospect, was a detailed explanation of the process from the doctor. She came in to put a mark on my hand and was out again in less than 30 seconds.

I left several hours later with the hand wrapped in a bulky splint and totally numb due to a nerve block. The block took care of the pain for nearly 24 hours and then I began taking the prescribed pain med.

That first week I had far less pain than I had expected. It was similar to the way my thumb felt before the surgery. I even began using that hand for simple stabilizing tasks, even though the splint made it impossible to hold things. I remember one time when I was trying to get comfortable in my recliner and used both hands to push myself back. There was a significant jolt of pain that took several minutes of recovery time. After that I gradually became more aware of an annoying burning sensation under the many layers of cotton padding and elastic bandage.

I finally got curious enough to look underneath it all. It was uncomfortable to the degree that I thought a re-wrap might help. The incision appeared to be healing well but there was a single spot of inflammation farther up the thumb that looked like it had a very thick suture drawing it in. “What on earth is that?”, thought I. That is definitely the place that hurts.

Sorry if you find this too graphic. I’m a nurse so I’m immune.

To be continued…

Countdown, Three Days Left…

Today I was thinking of all the things I might not feel like doing for a week, or more (lots more) after the surgery.

There was the furniture moving, for instance. There were some heirloom pieces stored in the barn that I wanted in the house. They were things I’ve wanted to look at and enjoy for a long time – but it was unreasonable to get them to Florida. But now, I’m right here where they are so it was time.

One is a dresser that was in my grandmother’s bedroom for her whole life, I think. The other is her cook stove, a woodburning Monarch that weighs a ton even though it looks small. Years in the barn meant they were dirty. The cook stove even had ashes in the ash box from the last fire – I can only imagine when that was. Doing this kind of cleaning and handling of heavy things is probably why my hands hurt tonight and probably why they are in such bad shape overall. But isn’t work what hands are for? In my world, yes.

I did laundry. I shopped for groceries for next week. I talked on the phone to the pre-op nurse who asked me a lot of questions she already knew the answers to and told me to be at the hospital by 7 am on Monday. The surgery is at 9. I hope that means there aren’t too many people ahead of me, and that I will get home before the day gets late.

I’ve read a couple different accounts of how restricted I will be after the surgery. The video even showed how my hand will be wrapped up and cast. My doctor indicated that I will be in a splint of some kind until my first post-op appointment, when a hard cast will be put on. That will stay on for the next three or four weeks and then I will get a softer, removable cast for another month. My thumb will be immobilized but I think the rest of my fingers will be free to wiggle.

Initially the pain will be eased by the nerve block given during surgery. It must last a day or so, after which I will be switched to oral meds. So no driving while on pain medication. I will be dependent on my daughter to cart me around, if I feel like going anywhere.

One video I watched said that driving would be permitted as soon as I could grip the steering wheel with both hands. My doctor didn’t say differently, but she added that if there were to be an accident, my insurance might not cover it. I would be considered an “impaired” driver because of the cast. I’m thinking I will be less impaired than many others on the road – not going to worry about that.

Three days…

Yes, It Hurts

10-09-2019

A good part of my life has revolved around music and playing the piano. For a few years I even taught beginning piano students and had a studio in my home. A friend and I were pianists for our church as well. Many times she would say “You play today. I can’t do it very well when it hurts this much.” I was in early stages of arthritis in my fingers as well, but I couldn’t imagine how the hurt could be bad enough to keep me from playing. Playing piano didn’t hurt at all, really.

Now, I get it. The last couple of months have been the worst ever. I’ve had flares at times when one or two joints would swell with inflammation and be tender, but lately it’s more than that. My left thumb is the upcoming surgery site, but the right hand is equally painful in the fingers, not the thumb. One finger is swollen so much that I had to go to a jeweler and have the ring cut off of it. Almost everything I do with my hands has some degree of pain associated with it.

I’ve read that the 50% of the hand’s work is done by the thumb. My left hand knows that very well because it’s pretty much useless for holding on to anything that requires thumb opposition. But fingers are so important too. Unfortunately, I don’t think there are good surgical fixes for finger joints. Right now it hurts to:

⁃ manipulate, or lift pots and pans in the kitchen. They are heavy and have to be grasped.

⁃ Fold laundry, especially little movements like turning socks right side out.

⁃ Put on socks and shoes, especially pulling ties tight or pulling zippers on boots

⁃ Hold small objects tightly, goodbye any kind of handwork

⁃ Type, even on sensitive keyboards like my iPad

⁃ Pull the sheets and blankets when making my bed

⁃ Open lids of jars, milk and juice cartons. Most any kind of packaging is not my friend.

Most of the time I plow through these activities anyway because the pain of movement is short lived. But I have progressed into a different stage now where pain occurs out of nowhere, without movement. It is more constant and has a “burning” nature. All of this just emphasizes to me how important hands are to life.

I’m sure having my left thumb fixed will eventually make things better. My doctor said that I will hate her for the first post-op month, dislike her for the second month, and thank her after the third. Reports also say that this surgery is long lasting with good function up to twenty years later. So the countdown continues, five more days.

Countdown to Monday 10-14-2019

It’s evening and I’ve just finished watching a video of a surgery that I’m going to have next Monday. If you faint at the sight of cutting and bleeding, don’t click this link Basilar Thumb Joint Arthroplasty with LRTI, but know that it is a good surgery with a high success rate. It’s also probably the most common surgery done worldwide. It is called CMC arthroplasty and ligament reconstruction. Simply put, if all goes well, they are fixing my painful thumb joint.

I’ve encountered a number of people who have arthritis in the basal thumb joint so I know it is common, especially among women. I want to do a few posts on this experience, mostly to inform, but also to work out the pain of the recovery period. Writing is helpful to me when I’m in pain or stressed because it ascribes purpose to what I’m going through. I hadn’t heard of or considered this surgery until a couple of months ago and there might be others, in the same situation, who will find my account helpful.

It’s not known why some people get this problem and others don’t. My thumb pain started several years ago. I have treated it with NSAIDs, with cortisone injection, and with platelet rich plasma (PRP) injections (a precursor in the stem cell therapy family). Of all these, the thing that has been most helpful is the thumb brace recommended by the PRP therapist.

A large part of my problem has been the loosening of ligaments that normally stabilize the thumb. Loose ligaments have allowed more movement and that causes more pain. The Push thumb brace holds my thumb firmly in place and keeps that joint stable – it’s been protecting me from the most unbearable pain for two years now. I have recommended it to others and they have also loved it.

Unfortunately, the pain is now more constant and not only the result of movement. It is time for a more permanent fix. The surgery is outpatient, but it will be with general anesthesia. I’m not allowed to drive myself home so my youngest daughter has generously arranged to come and help with the day of surgery and the first week. I’m hoping the fun of her visit will greatly distract me from what my poor hand will be feeling.

Check back tomorrow and I’ll describe what medical science has come up with in this remarkably successful procedure.