First, let me clarify: this doctor isn’t going to give me any more Prednisone or other steroids. He says it will melt my kidneys and kill me faster than my heart valves. Bummer.
What a killjoy. It’s like getting caught by the Baseball Commissioner for taking steroids except all I want is to walk like a regular person as opposed to limping around and falling over a lot.
But Dr. Lawrence IS a fancier of lidocaine shots. Today, I got one in my right shoulder and after his Christmas vacation, he will take on my hips.
I don’t have anything wrong with my hips. It’s my back that’s screwed up. The back is so calcified and arthritic, it sends signals to all the other local joints, so my bad back makes the rest of me hurt. Double bummer.
It turns out my shoulder has become arthritic, too. It didn’t used to be. It was one of my “normal” joints. Now, like the rest of me, the shoulder is calcified and that calcification is pinching a nerve.
That’s why my hand goes numb. And the rest of the arm hurts so much.
To be fair, it only hurts when I lie down, as in “trying to sleep.” If I could sleep sitting up, I wouldn’t have a problem, or at least not yet. It’s one of the reasons I stay up so late. Lying down hurts, but sitting up isn’t nearly as bad. Of course, then there’s walking. That’s bad too. And let’s not even think about running!
It’s nothing special. Just my body being itself. I sure hope this shot works.
Garry got one in his left shoulder about two months ago and it worked for him so I live in hope.
Finally, last night, I figured out that I’ve got between 10 and 12 years to live. It would be great if it were longer, but that’s pretty much what I’ve got and I want to live them well.
The math isn’t complicated. Hopefully, I’m finished with cancer. As much of my gastrointestinal tract has been removed as can be removed. My spine is completely calcified and most of the time, I can barely move.
The valves and Pacemaker they put into my heart are stamped and dated. They have time limits and the clock is ticking.
I’ve got two replaced heart valves: the mitral and the aortic.. Both are made from animal parts (valves?) and have an average life of 15-years. I’ve had them for nearly five years. They can last a little longer — sometimes as much as 17 years or as few as 12. Four down, let’s say ten to go?
Then there is the Pacemaker. The battery runs out in about 10 years, at which point they will want to open me up, remove the old pacemaker and replace it with a new one with a new battery. I think maybe since they have made major improvements in Pacemaker technology since they put this one in me four-years-ago, I could have this one replaced with one of the newer ones. Better batteries. And not metal.
That way, I wouldn’t have to wait until my eighties when I doubt I’ll want to go for heart surgery, minor or major.
The valves are a larger problem. I know they are making progress designing replacement heart valves which last longer and work better, but whether they will be ready for me – in this lifetime – remains to be seen. As it stands right now, I have about 10 years. Maybe 12. After that, it’s time to say goodbye.
Unlike most people, there’s an actual clock ticking in my chest. Optimism will not make a difference. The timeline was created the day they did the surgery — five years this spring. The best I can do with it is pay forward on the Pacemaker (if they let me) and hope for the best with the valves.
Meanwhile, I am coming off a two-week remission of pain and misery using Prednisone.
I know Prednisone has a lot of side effects, especially for a woman my age with heart issues. Nonetheless, this two weeks using Prednisone has been the best two weeks I’ve had in years. I’ve been able to walk upstairs. Down is harder because it’s a balance issue, but I can walk upstairs. Slowly, but I can do it. I’ve been able to sleep in a comfortable position … which means I’ve been able to sleep.
I can get out of this chair without pushing myself up with my hands. I didn’t have to limp between the kitchen and the bathroom. In short, I have felt like I’m really alive. Now that I’m down to my last four tablets, I have been doing serious thinking about how I want to spend these next ten years.
I probably can’t take a full run of all-the-time Prednisone. That would more than likely wind up ending my life sooner rather than later … but maybe intermittent Prednisone? Like two weeks on, a month or six-weeks off? If I’ve got a limited lifespan, I would like to live it. Enjoy it.
I want to be able to move and not spend most of my life fending pain.
I’ve run out of options. I can’t take any NSAIDs. I am already taking narcotics light and I don’t see heavier doses as a direction I want to take. It doesn’t make the pain go away and it makes me stupid. What’s more, I’m allergic to most of them.
So, following the holidays, it’s time for a long, complicated talk with the doctor.
I can hope science will make a great leap forward that will change my future. Otherwise, I would like to make sure I don’t spend the remainder of my limited time battling pain. And you never know. They might find the miracle I need. It could happen.
Sensible ideas are welcome. I have choices to make and it’s time to make them.
I was going to try and write, but with the brace, I can’t. I keep trying but get more wrong keys than right. Sorry! Crepuscule will have to wait.
Note: Solved the problem. Removed the brace. The hand really HURTS.
Funny how this works. Just yesterday I was offering advice on pain in hands and wrists from essentially overusing of these critical muscles and nerve bundles.
Our hands are what make it possible to do the small, precise work involved in most of the activities we pursue. Music, typing, knitting, sewing, cooking, pottery. Unlike the long muscles in our legs and arms and even our hearts, our hands (and feet) consider of hundreds of very small, intricately connected muscles that are absolutely essential to complete the ordinary tasks of life.
Typing this, for example.
Last night, my right hand and wrist went into OH MY GOD THAT REALLY HURTS mode. This is not the first time by any means. I’ve been pounding piano keys, typewriters and computers since I was a very small (like four years old) child. I painted, drew. I chop food and I carved wood. I quite literally don’t know what I would do without my hands.
I’ve also been working on a computer since the early 1980s. Constantly. For work and for play. Until very recently, I still had my piano, but I could only play it for maybe five minutes until the pain was so intense I had to stop. I finally sold my piano because it was just sitting there getting dusty. I had to admit my days of playing were finished.
You notice how rarely you see people my age who are concert (classical) pianists? This is because we all develop arthritis in our hands. My piano teacher had it and her older sister could no longer play. Arthur Rubenstein played anyway, but eventually, the pain got to be too much.
When I sold the piano, it was an admission my days of making music were over. For good. Add that to the endless hours on a computer keyboard and my hands are a mess. I have pretty extensive arthritis in both hands and carpal tunnel issues in both wrists. In theory, I could the carpal tunnel fixed, but I’m not really up for surgery these days. Also, that wouldn’t take care of arthritis which is the bigger problem.
Usually, one hand hurts more than the other, for no special reason. Whichever hurts more gets the ice. When I was trying to practice the piano, I had ten minutes of practice followed by half an hour of icing on both hands.
I was like a pitcher who doesn’t want to give up baseball, but my curveball isn’t cutting it and the fastball will never happen again.
Garry asked me what he could do for me.
I said nothing, but there was something I could do for myself. I turned off the computer and put it on the shelf. That’s what I can do. I can give my hands some time off and with a little luck, after a few days or a week, they will be better.
I’ll try to write when I can, but I’m not going to comment on everything and I can’t write a lot. I shouldn’t be doing this, but I don’t know what else to do. Not writing seems too weird.
Take care of your hands. They are fragile. If you push them too hard, they won’t work. No kidding.
Note: Yes, it is the wrong word, but somehow, this is what popped up in my email this morning. So I’m going with it anyway!
Comfortable is what I wish I were, but which, so far, I’m not. Despite a new mattress, pillows, and all that, by the time morning has rolled around, my back has seized up.
It’s frustrating, not to mention painful. On a more positive note, the thing I have to do — which is the thing I don’t want to do because I could really use another couple of hours of sleep — is get up and move.
Every time I see Lionel Barrymore in his wheelchair — a result of his arthritis — I wonder how come they didn’t help the guy keep moving. But those were the days when if it hurt a lot, they plopped you in a wheelchair and that was it. Bad idea.
Arthritis hurts. No argument. About the only thing that makes it hurt less is activity. It doesn’t have to be heavy exercise. Mostly, I can’t do that for other reasons including that my heart doesn’t like it.
Light exercise helps a lot. “Woman’s work” like vacuuming the house, cooking, dusting — all of that and other examples of inside work loosen you up and make you feel a lot better. Quickly, too. A bit of gardening and even light raking or snow shoveling makes it better.
The hardest part of the effort is not doing the work. It’s getting out of bed and getting started. I have to do a lot of mental pushing and shoving to convince myself that it’s what I need to do. Oh, those conversations with one of me saying “Sleep. You need sleep. You are tired.”
Meanwhile, the other me is shrieking “Get your lazy butt out of bed and do something. Come on! You can do it.” I frequently say it out loud too, sitting on the edge of the sofa telling myself “You can do this, I know you can. One little push and you’ll be up and moving.”
Eventually, the second me wins.
Those first few steps are pretty wonky, but I look relatively normal a bit later. Eventually.
My arthritis is severe. I take relatively high (or as high as I’m willing to go) amounts of painkiller. All they do is lower the level of discomfort. Nothing will fix it. More drugs won’t make it hurt less and would probably make the rest of me feel worse.
I had surgery to fix my spine when I was 19. It was an early version of the work they do these days, but without the electronic assistance and tiny implements. Everything depended on saws, drills, and bone paste created from a different bone (my left hip). It crumbled over the years and now, it’s a mess. No surgeon wants to go fix another surgeon’s mess. Fixing old surgeries is one of those things most surgeons hate.
Since chances are about equal of making things better — or making them much worse — and this from Boston’s top spinal neurologist — I’ll pass.
I’m up. Not quite at’em yet, but I’m working on it. It’s about an hour and a half earlier than I wanted to on my feet, but I am out of bed, dressed, having coffee. The vacuuming is done. The dogs are barking. The sun is shining through the hazy, humid air. And I feel better.
The quintessential night. My back hurt when I got into bed. I hurt slightly less when I turned on my left side but a few hours later the dull, throbbing ache had moved from quintessential to OWWWWW.
Only one thing helps and that’s moving the bed into an almost sitting position, taking much more aspirin than I should, a couple of tranquilizers (to get the muscles to calm down) and passing out for a couple of hours. I was really counting on NO phone calls and NO visitors. Lucky me. None showed up and Garry, one of the rare moments in our lives, got up before me.
By the time I got up, other than being zonked from an OD of over-the-counter medications, I was not screaming in pain. I wonder how much longer I can go like this?
And it’s probably time for a new mattress. It has been 15 years and even a latex foam mattress grows weary.
The problem is, I’m weary. Trying to avoid getting whiny about it, as a life, this sort of sucks. Between the fibromyalgia, arthritis, heart, and a general sense of decrepitude, this is the quintessential stage when all the things that are wrong with me gang up and say “GOTCHA!”
I’m sure by this afternoon, I’ll be in a better place. Or maybe tomorrow. But right now, on a day that is the first cool and comfortable one in weeks, I HURT.
Just saying. And I really need to spend an hour in the grocery store, too. That will probably help. I may not want to do it, but going out and doing something helps. I hate the process, but the results are usually (overall) pretty good.
Come, Sleep! O Sleep, the certain knot of peace,
The baiting-place of wit, the balm of woe,
The poor man’s wealth, the prisoner’s release,
Th’ indifferent judge between the high and low;
With shield of proof shield me from out the press
Of those fierce darts Despair at me doth throw!
O make in me those civil wars to cease!—
I will good tribute pay if thou do so.
Take thou of me smooth pillows, sweetest bed,
A chamber deaf of noise and blind of light,
A rosy garland, and a weary head;
And if these things, as being thine in right,
Move not thy heavy grace, thou shalt in me,
Livelier than elsewhere, Stella’s image see.
Sir Philip Sidney
I remember when going to sleep was simple. I changed into a nightgown or pajamas. I took off my jewelry. Brushed my hair. Brushed my teeth. Washed face and hands. Plumped up the pillow, pulled up the covers — and went to sleep. Sometimes, I read for a while … and then fell asleep.
Last night, I went to bed. I did the whole nightgown, hair, wash, brush thing. Of course. Then I adjusted our electric bed trying to find the angle which would give me the least amount of pain in my back while keeping me sufficiently upright to continue to breathe.
I then took the various medications I take before bed — some for blood pressure, others for pain, and one for actual sleep. That was when I realized my rash was acting up. Damn. I put some cortisone cream on it, but that didn’t do it. So I went into the bathroom and used the other, stronger gunk. I stood there for a few minutes waiting for the gunk to dry, then went back to bed.
I realized I couldn’t breathe. I used the daily inhaler. Still couldn’t breath. Used the emergency inhaler — twice. Breathing restored, I realized my eyes were dry enough to feel like I had gravel in them. I found the eye-drops.
“Ouch, ouch, ouch, ouch,” I said as the liquid hit the gravel. Garry couldn’t hear me. He had the headphones on and was deep in a western.
I tried another round of eye-drops. “OW!” I yelped. Two rounds of eye-drops later, the gravel had diminished. I realized I needed to do something about my incredibly dry lips. One round of chap-stick. Another round of chap-stick. One more round of chap-stick and by now, I’m wide awake. And my back was killing me.
I found the lidocaine cream. Applied it to my right hip. My left hip. Up and down the spine. Then — again — I waited for the most recent gunk to dry.
By now, a full hour had passed since I put on my nightgown and brushed my teeth. I had been sleepy, but by now, I wasn’t sleepy. Not a bit. I thought wistfully of those long ago days when going to bed was just … going to bed.
Worse, I still had to look forward to the thrill of getting out of bed. Convincing my legs and arms to wake up. Making sure my spine was going to let me stand up and hopefully, walk.
The getting up ritual is a whole other thing, starting with around four in the morning when I start readjusting the bed. Because during the night, my spine will congeal into a solid lump of misery. I have to decide what — if any — medication will help. I have to be careful because I can only take a specified amount. If I take meds at four in the morning, I can’t take them later.
You get the idea.
Sometimes, the complexity of going to bed then getting up — first for medication and going back to bed. Next, rearranging the electric bed, trying to go back to sleep, hearing The Duke hit the door, knowing if I don’t get up and give everyone a biscuit he’s going to keep hitting the door until the door breaks or I get up and do the “Good Morning, beloved Dogs” thing.
Nothing is simple. Especially not simplest things.
I’ve gotten pretty good at untangling myself. It’s all about positioning, taking the pill I sometimes don’t want to take, but if I take it, the day goes a lot better than if I don’t … and slowly stretching until things are more or less mobile. My back has been in poor shape since I was a teenager. I had my big surgery on it when I was just 19 and time hasn’t been kind to the bones.
Time generally isn’t kind to bones. Arthritis seems to be universal for damaged joints, whether broken by accident or surgically renovated … and often, just “because.”
Mine are a mess both because of surgery — and “just because.” Arthritis is not a special issue at our age. It’s not a matter of “if,” but more like “how bad” and “how much does it affect you.” It wasn’t too bad this morning. I slept on my back and generally, if I make myself sleep on my back, I wake up more mobile than sleeping on my side, which I find a lot more natural. My back doesn’t agree. There’s not much point in arguing with my spine. It always wins.
So we are off. Garry is getting a CATscan of his head to make sure he has all the requisite pieces for a cochlear implant. Then, in another few weeks, the first doctor’s appointment with the cochlear audiologist, then after that, the surgeons. This stuff takes a lot more time than people think it will.
When you have an emergency, everything happens in a hurry, but when you have choices to make, it takes time. And of course, it’s winter, so everything takes more time. Christmas vacations chop December into pieces and the hangovers from New Year’s take care of early January.
And still handsome.
I remember waiting for my heart surgery. First, they hustled me along. Urgent, urgent, urgent … but they delayed it three-times. I had to delay it once because I had pneumonia. Heavy coughing doesn’t go well with heart surgery. It took — in total — more than three months between determining I needed the surgery and actually having the surgeon and me both available at the same time. Emergencies came up and for a heart surgeon, they are always first. Heart surgeons live on emergency schedules. By the time I actually got into the hospital, I was an emergency. You can’t always tell from testing alone — and that’s something everyone needs to remember.
This surgery for Garry isn’t an emergency, but it is not optional, either. It needs to be done. Hearing aids won’t work for him anymore, so it is this or a gradual and close to total loss of hearing for him. He needs his hearing back. I need it back, too, though I wonder what it will be like knowing he really can hear me. I won’t be able to mutter under my breath all the time!
Our granddaughter sent me a note last night suggesting we should have Garry run for president … because we know Garry could fix everything. I’m pretty sure Garry doesn’t think he could fix everything, but sometimes, I wonder. He’s been a pretty good fixer over the years — and even when he can’t fix stuff, he’s very good at getting everyone to CALM DOWN. In the process, he may be leaning towards madness, but you’d never know it to look at him.
A man with a poker face like that should have played poker. What a waste!
I’ll be back later, but not with more news. They never tell you anything at radiology. You have to wait for the doctor to officially tell you. Eventually, news will follow but do not hold your breath!
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