RIDING IT OUT – Marilyn Armstrong

For almost two years, I’ve barely used the chair lift. I was glad it was there and it was useful for hauling groceries and suitcases upstairs and that was good for both of us. But lately, I’ve started using it. I realized there was absolutely nothing to be gained by dragging myself up two staircases, gasping, wheezing, with heart pounding.

Although I can —  and do — get up and down the stairs, it’s slow and getting slower. It’s more than a bit nerve-wracking too. It takes me a while to take that first downward step (up is easier) and I’m always sure I’m going to fall. I have fallen a lot over the years, including when I was younger. I can’t seem to find my balance going down.

One step at a time and carrying packages, stairs are impossible and dangerous. Riding up and down the stairs takes the fear and pain out of the process of getting in and out of the house. I’m okay walking on the sidewalk and the floors, but the stairs put such a strain on my lower spine and hips, I went from feeling okay to feeling ready to collapse.

It was time to actually use the chair lift.

Not only is it a way to get upstairs not on my feet, but it ‘s also possible to get someone in a wheelchair into the house and up to our living level. Before that, we’ve had to tell anyone with disabilities that our house was unready for them.

I reached the end of assuming that I’m going to get better and the stairs won’t be as difficult. Asthma is worse, probably because it’s untreated and my spine is worse, especially at the S1 juncture which was never fused — unlike the three discs above it. The pressure on the spinal cord is serious and unlikely to improve. There’s no exercise that will improve it.

It’s my final nod to the realities of my life, the “giving in” to the pain as something that won’t get better. The new drugs I’m taking help quite a bit — as long as I walk on relatively flat ground. I can climb a little bit if I am very careful. I can cook and clean in the house and if the ground is not rough, I’m mobile. To a point.

When I’m tired, I have to take it seriously. I need to stop and rest. When I do that, I don’t fall apart and I stay reasonably well. No amount of goodwill, determination, or optimism will change the condition of my spine. I think not hauling myself up and downstairs will probably marginally improve my mobility.

I cannot begin to tell you how much this isn’t what I envisioned for my life as a senior. I was planning to be a dashing senior. Like in the movies. Gray and wise, but ready to do it all.

Sometimes giving in is the right thing to do. I wanted to force myself to be that snazzy senior I imagined. Overall, I think it’s better if I stay alive and able to move!

VEINLESS – Marilyn Armstrong

FOWC with Fandango — Trickery (OR in this case, just tricky!)

Another day, another trip to the hospital. At least it’s something I WANT to do this time, but I will be gone most of the day. Sorry about that!

I was supposed to be at the hospital yesterday, but they got my tests mixed up, so it got canceled. The same tests, this time properly ordered, will be rescheduled next week.

It all has to do with veins and dye infusions.

I don’t have any veins.

Well, that’s not exactly true. I have lots of them, but they are all tiny and thready. Getting blood out of me is tricky (trickery?). I have often suggested I bring my own knife and slice off a piece of finger like I do at home. Just give me a vegetable to cut and I’ll produce gallons of blood.

Brivo CT325

Whenever I do that (which used to be often), there was blood absolutely EVERYWHERE. For some reason, the hospital never agrees. As I said: getting blood out is just a bit of trickery (and some nurses really have a magic touch for finding a viable vein) — a medical magic trick.

Getting a substance (any substance) into me is a nightmare. I have defeated two hospitals who could not find a usable vein and wound up infusing into my throat. Which, while not terribly painful, is really ICKY in every meaning of the word. And it looks ugly, too.

In both cases, it was that or die so I couldn’t argue the point … but this is a test. The reason they need veins is so they can put dye in me to make the test results sharper.

They should get Topaz’ new AI Sharpen filter. It’s amazingly effective and then, they could skip the dye and still have sharp results.

Regardless, I’m not going through the “hunt the body for a viable vein” experience again. Been there, done it, didn’t like it. We’re not doing hands, feet, or throat, sorry. If that’s the choice, whatever is wrong with me will just have to stay wrong.

I still have to be at the hospital in a couple of hours because I’m getting cortisone shots in my hips. Yay oh yay!

For the past few weeks, there’s almost no part of me that doesn’t hurt and last night I woke up crying because I hurt so much I didn’t know what to do. So of course, called the doctor as soon as he was open and said: “I cannot go on like this.”

More drugs are not an answer I would have to take a LOT more drugs and I’m already thoroughly drugged. I have to find a way to make my life less painful. I want to be able to walk. Even if it’s not a hike, just walk more or less normally for short stretches. Not such a big thing one might think.

So cortisone shots it is. For now.

I know the shots are not a cure. What’s wrong with me (entire spine riddled with arthritis) is painful, but not lethal. It won’t kill me. It might make me wish it would and it will linger on, getting worse as the years roll by. Not a pretty thought.

I remember being 30 years younger, living on Beacon Hill in Boston and hauling 40 pounds of groceries up the long hill to our apartment. Realizing my legs were like iron. I was muscled. Between hauling heavy bags up long hills, horseback riding, and walking everywhere in Boston because if you moved the car you might never find another legal parking space, I was in great shape.

The shoulder is an offshoot of horseback accidents. When you are riding, one of the things you learn is if you fall, hang on to the reins. If you don’t, your horse is going home. It’s a long, long walk in your riding boots back to the stable. It’s entirely possible you don’t even know the way back since as often as not if you are riding alone, the horse was your GPS.

In the course of falling off a few horses and grabbing reins on the way down, my shoulder got pulled out of the socket a few times. The surgery to fix that is normally not a big deal.

I should have taken care of it 50 years ago, but I didn’t.

I also have a left knee without an anterior Crucis ligament due to a bad fall — as well as the shoulder which could have easily been repaired when I was 25, but can’t be fixed now.

I waited too long. Like I did with my hands. Nine years ago they could have fixed the arthritic spurs but today, they can’t. It has advanced too far and I’m too old.

I yearn for those days when I had muscles in places I didn’t know you could have muscles.

I don’t have long-term answers. Cortisone shots a few times a year with some luck will help keep me moving. Nothing will repair the damage. There’s no surgery anyone is willing to do that will fix it. It has degenerated too far and the previous surgery caused as much damage as it supposedly fixed.

Right now, though, I’m glad enough that there’s even a respite — even if it’s just for a few weeks.

Long term? I am still working on that one.

ABOUT THAT PAIN IN MY RIGHT ARM? – Marilyn Armstrong

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.

THE TIMELINE – Marilyn Armstrong

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.

My post surgery heart pillow; You grab it and hug it when you need to sneeze or cough, it is supposed to make you feel better. It doesn’t.

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.

FRAGILE HANDS – Marilyn Armstrong

FOWC with Fandango — Fragile


UPDATE!

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.

Hands are fragile, even if you aren’t old!

ALL COMFY? – Marilyn Armstrong

FOWC with Fandango — Comfortable

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.

Photo: Garry Armstrong

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.

Marilyn can still walk! Photo: Garry Armstrong

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.

Clean!

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.

Almost comfortable.

A QUINTESSENTIAL NIGHT – Marilyn Armstrong

A quintessential night and I’m too tired to hold my eyes open.

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.

Photo: Garry Armstrong

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.

Parked cars

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?

Quick trip to the grocery. Frozen pizza for dinner. I was in no mood for cooking.

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.