WHEN BONES DON’T KNIT – Marilyn Armstrong

Yesterday morning, I dropped the mouse for the computer in the bedroom. I reached down to pick it up and a pain shot through my chest, down my arm and I yelped.

I had a lot of heart surgery more than five years ago. Most of it has healed well. The thing that hasn’t healed properly is my breastbone. Surgeons split it in half when they work on your heart. Normally, it will take between 2 and 6 months to knit into a single unit. Mine didn’t knit, so it’s still a two-piece breastbone. Healed, but not knitted and held together with steel wire. Apparently, no medical technology exists that can convince a bone to knit if it doesn’t want to.

Typically, this is a problem on joints that cannot be immobilized — ribs, breastbone, shoulders, spine. And, I should mention that when one of these is broken, you discover that every single other thing in your body is connected to it. So it has been for the past two days. Moving really hurts. But only at certain angles while using my right arm.

I’m a rightie. Of course.

It seems a little better today than yesterday, but it’s still crunching with each breath I take. I can hear it through my inner ear. Creepy.

Every doctor I talked to assured me — energetically — that it would heal in three months. When after three months, it hadn’t healed, they said “Definitely by six months.”

When more than a year had passed, they shrugged, pointed out that there’s nothing they know of that will make a bone knit if it doesn’t feel like knitting. Nope. No glue. The only thing they could do is open me up and rewire me. “Why, ” I asked, “Would that improve the quality of my life?”

My doctor — my personal physician — shrugged. “It wouldn’t. Personally, I wouldn’t do it.”

It’s more than five years later, heading rapidly into six years. My chest still crunches when I breathe and sometimes pops out of place when I lift something with my right arm. It sometimes makes breathing pretty unpleasant and my right shoulder doesn’t like me anymore.

Meanwhile, I’m held together by some pretty tough steel wire. Doctors always seem so sure what will happen after the surgery. Except in my experience and for a lot of other people, it doesn’t necessarily go that way. Nerves don’t “calm down.” Bones don’t knit. You are left with a lot of weird problems you were sure were going to be gone. If at least the major part of the surgery worked, then I suppose it’s better than where you were at the start. I always want to trust my doctors because they mean well, but they aren’t me. So these days, I understand just because they believed it when they said it doesn’t mean it will happen that way.

WHAT’S A DAY WITHOUT A CHALLENGE? – Marilyn Armstrong

RDP #63 – CHALLENGE


Lately, every day is challenging. Life is a challenge.

Yesterday’s challenge was getting everything that needed doing, done. My son doesn’t have a lot of time off from work. It was the first of the month, which meant I had some money in the account. The freezer was heading towards empty and Garry is not allowed to haul groceries. This is not one of the things he sees as a challenge, so he had no problems with me taking care of it.

Testing, testing …

I want to make it clear that he is entirely capable of doing anything he wants to do, albeit rather more slowly than in earlier years. The hardest parts of my experience with Garry’s surgery is preventing him from exercising or doing anything strenuous. And NOT blowing his nose.

He is an exercise junkie. Since basic training in the Marine Corps, he needs that exercise and not doing it makes him feel weird and uncomfortable. I get that.

Right now, he can’t. No heavy living, no heavy hauling. He has one month — four weeks — when he can’t lift, haul — or blow his nose. He forgets about the nose blowing, so every time he does it (instinct wins over doctor’s notes), he feels as if his head will explode. That’s a hard-to-ignore reminder. Exercise is a different problem.

Garry digging out

We had it out the other night and I finally had to say: “This is your body, your ears. Your hearing. You’ve waited a lifetime for this miracle. Are you going to blow it to by secretly doing push-ups?” For me, this is a no-brainer. Obviously, we are in different head spaces on this.

He thinks I’m rejecting him. His male translation of my comments is that I don’t care what happens to him, but the truth is 180 degrees in the other direction. The idea of actually being able to have a conversation I don’t need to shout from three-inches away from his left ear makes my heart race.

That being said, I can’t follow him constantly reminding him of what he needs to do or more to the point, not do. Sort of like the ancient court jester and the king. I probably need different clothing and a bladder.

Garry reads the doctor’s notes every morning when he gets up, to remind himself of the instructions. I love him madly and want this to work for him, but he has to want it at least as much as I do. In the end, it’s not my body, not my issue.

It’s a bigger challenge for him than it would be for me. But for heaven’s sake — IT’S JUST FOUR WEEKS. His body will not disintegrate from lack of exercise after one month of skipping morning exercises. He can go back to two hundred push-ups before August is over. Yes, he really does 200 push-ups every morning along with other exercises.

That doesn’t seem like a huge price to pay for the privilege of hearing for the first time in his life. He can walk, do light work around the house — you know, the stuff I usually do — and watch as many baseball games as he can fit in a given day. And maybe fit in a movie or three. He could also take the camera and take a few hundred pictures. We could stroll in the park.

A challenge, I have concluded, is different for each of us. My biggest challenge is getting out of bed, then actually walking. The rest of my day is easier, but I have to get past that challenge.

Garry is far more complicated.

RDP #23 – I HAVE A HEART — Marilyn Armstrong

RDP #23 –  HEART

I have a heart.

Everyone (living) has one. These days, the issue is whether or not it works like it ought to. You know, compassion. Caring, love, concern. That stuff.

Mine is a little more complicated. I have two replaced heart valves – mitral and aortic. I also had a myocardectomy involving removing an oversized muscle in the left ventricle which had grown exponentially because the mitral valve wasn’t working. There was also a bypass and implanting a pacemaker.

A fantastic amazing wonderful heart surgeon.

After they opened my chest, it never properly healed. This has made full-scale recovery difficult. There’s nothing that can make the chest heal if it doesn’t want to.

Sometimes, injuries don’t heal. They should, but for some reason, don’t. The medical team will tell you it will, but it depends on your body’s ability to recreate cartilage. Your chest isn’t solid. It’s a mobile design so you can breathe.

Until my chest didn’t heal, I had no idea how many different parts of my body were connected to my chest.

I didn’t know there was anything wrong with my heart except for that annoying murmur I’d had since I was a child. I knew I was out of breath often, but I was still recovering from a recent bi-lateral mastectomy (cancer), so I wasn’t at my peak. Whatever my peak might be. I’m not sure I’ve been at a peak for years. Like maybe 15? Or maybe never?

Note the dog hair. It makes it “smell right” …

Anyway, they told me that after all this repair work was done, I would feel MUCH better. Except my heart wasn’t bothering me. It’s my back that really kills me.

Four years later, I feel better. I’m 7 years past cancer and almost four years post heart surgery and I’m gradually becoming human. Unfortunately, I’m also 7 years older which, at my age, is a not an inconsiderable difference. You don’t bounce back from surgery the way you did when you were younger.

Nonetheless, I am better. I haven’t been sick except for a cold and a stomach virus and they only lasted a few days. What’s left is a woman with a badly damaged spine, a seriously screwed up digestive system, two fake breasts, and a redesigned heart.

As for the digestion, acid reflux, left untended for a lifetime, can make a mess of your innards. If you have a reflux problem, you might want to deal with it before it deals with you.

Now, speaking of my heart, I have one. No small miracle, that. My pacemaker is metal, so I can’t have an MRI … which for some reason the medical staff of my local hospital refuses to believe, even though it’s not as if I have a reason to lie about it.

Also, to go with the spine, I have fibromyalgia. Spinal arthritis (there was a surgery involved there, too) is bad and fibromyalgia goes with serious arthritis like the horse goes before the cart.  I deal with it. I deal with everything. There’s so much to deal with sometimes, I wonder how I find time to deal with anything else.

Weirdly, you get used to it. Impossible though it seems, you learn when you are going to have a bad day. On those days, you rest. Listen to audiobooks or read. Process photographs. You do not go for long walks or explore the wilds.

I also understand that even had I not had such a long run of ill-health, I would be getting on in years, so I’d be dealing with something. It’s just one of those things. A few people enjoy brilliant health from birth to the end. Others of us? Not so much.

For all that, I do feel better. I can walk. I have some kind of MS that mostly affects my eyes but is in remission. I don’t seem to have any sign of renewed cancer. I had it twice so I’m hoping that was all of it.

There’s not much more they can do to my heart except change the battery in the pacemaker and no surgeon wants to do anything to my back. As long as I can walk, no one will touch it.

I have a heart. It works. It’s extraordinary what they can do to fix us these days.

Absolutely astonishing.

JUST ONE OF THOSE CRAZY THINGS – WHEN THE BONE DOESN’T KNIT

Yesterday morning, I dropped the mouse for the computer in the bedroom. I reached down to pick it up and a pain shot through my chest, down my arm and I yelped.

I had a lot of heart surgery a couple of years ago. Most of it has healed well. The thing that hasn’t healed properly is my breastbone. Surgeons split it in half when they work on your heart. Normally, it will take as much as between 2 and 6 months to knit into a single unit. Mine didn’t knit, so it’s still a two-piece breastbone. Healed, but not knitted and held together with steel wire. Apparently, no medical technology exists that can convince a bone to knit if it doesn’t want to.

Typically, this is a problem on joints that cannot be immobilized — ribs, breastbone, shoulders, spine. And, I should mention that when one of these is broken, you discover that every single other thing in your body is connected to it. So it has been for the past two days. Moving really hurts. But only at certain angles when using my right arm.

I’m a rightie. Of course.

72-kitchen-window-november-03112016_04

It seems a little better today than yesterday, but it’s still crunching with each breath I take. I can hear it through my inner ear. Creepy.

All of this makes it difficult for me to do stuff. If I want this to settle down, find its notch, and stop hurting, I have to settle down and be as still as I can for a few days.

All of this is an explanation of why I’m not doing much. I wrote a bunch of posts which are already scheduled. There will be new posts, but otherwise, I have to do the one thing that’s hardest for me to do: nothing. For a few days at least. If this doesn’t correct itself, I’ll have to go see a surgeon and I cannot emphasize enough how much I do not want any more surgery of any kind. Ever.

Meanwhile, I’m held together by some pretty tough steel wire and I’m resting. And hoping this takes care of itself.

AT THE HEART OF THE MATTER

Re-springing Your Step – Tell us about the last experience you had that left you feeling fresh, energized, and rejuvenated. What was it that had such a positive effect on you?


It was just about a year ago when I discovered the heart murmur I’d had since early childhood was not just noise. It was a badly damaged mitral valve, and the aortic valve was in trouble, too. The heart muscle, trying to compensate for the inefficient mitral valve, had grown huge, trying to push blood through the ventricle. The muscle was so oversized, it was blocking the valve. I wasn’t getting oxygen.

72-pacemaker_2I was having trouble breathing. I was pale, weak. And I didn’t think much of it. Heart problems don’t manifest dramatically. They creep up on you. You are tired. You do less. You avoid stairs, limit activity.

I believed my heart was the one organ I didn’t need to worry about. I ascribed all my symptoms to other conditions. Asthma. After-effects of cancer. Arthritis. Bursitis. Other stuff.

When one has many overlapping medical conditions, it’s easy to assume whatever is going on, is probably one of them. It will pass, I told myself.

The local “doctor” colluded with me in pretending everything was hunky dory. I’d been getting an EKG every year. Every year, they told me “you’re FINE.” I took it at face value, a gift horse. I wasn’t about to examine its teeth.

My supposed cardiologist showed no interest and even less alarm, at my situation. He didn’t have time to see me personally. Dr. Brownstein — a very busy man I was assured and my so-called cardiologist of record — never actually saw me. He sent me to his young nurse practitioner to pass along messages, omitting to mention the cardio myopathy in the left ventricle. At that point, no one suspected I also needed a bypass for a clogged artery. No one ran any tests.

Dr Brownstein when I finally saw him — 6 months after it was determined my mitral valve was failing —  said I should wait until my heart completely failed, then deal with it. He said — this is a quote — “You can manage with a bad valve for years.” Big happy smile. The asshole.

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I was coming out of my self-induced fugue state. I went online and searched for surgeons specializing in minimally invasive repair of mitral valves. I knew, from reading about it, that the best course was always to repair ones own “original equipment.” Not always possible, but always worth trying. If it didn’t work, the surgeon would use a replacement valve — fashioned from the tissue of a pig or cow — or a mechanical valve.

I didn’t want a mechanical valve because they require a lifetime of blood thinners. Also, my first husband died of complications following implantation of a mechanical mitral valve. Bad history.

I found a doctor. An excellent cardiac surgeon. He ran tests, including an expanded EKG. It showed the mitral valve to be in very poor shape, but he though there was a slight chance he could save it. As for the aortic valve and the big muscle blocking it, he’d carve that out. He was sure he could save the aortic valve.

Heart surgeons cover emergencies and Beth Israel Deaconess in Boston is a premier cardiac facility, so patients come from everywhere. I was rescheduled four times before my number came up. Finally, I was in the hospital. More tests. Intrusive nasty tests. They didn’t give me nearly enough drugs. There are things I’d rather not remember.

Finally, D-Day. They opened me up. It was evident the tests hadn’t told the whole story. The mitral valve was not working at all and there was almost no blood passing through the aortic valve, either. How I was managing to survive was an interesting question. And I needed a bypass. And some other stuff.

The surgery lasted almost 8 hours and they kept me in a medical coma for 48 hours afterwards. If you think you can’t feel pain when you are in a medically induced coma, you’re wrong. You can feel pain just fine. You just can’t do anything about it. I was hurting. But it was a very fine hospital and at no point did I feel anything but safe and protected. These people had me. Never was there a moment when I felt in danger, even if I was. After determining my heart would not beat on its own, I had one final surgery to implant the pacemaker.

I got home at the beginning of April. I was a physical and emotional mess. Over the weeks and months, I sorted it out. Pain eased off slowly. The the 6-month mark passed and my breast bone was not healed. Now, at almost a year …. it’s close. It doesn’t grind as much.

self 4-27-2914 marilyn

More important, the spring is coming back. It’s a tiny spring. I’ve had cortisone shots in my hips and walk better. My back is the same. It can’t get better, but applications of heat and gentle exercise might keep it from getting worse.  I’m beginning to feel like someone I know.

So, what put the spring back in my step? Heart surgery and lots of it. A mitral valve replacement. Cardiomyectomy and aortic valve repair. Cardiac bypass. A pacemaker. Two big shots of cortisone in my hips and a year of healing.

Everything isn’t perfect. I’ve got so many replacement parts, it’s funny. Two breast implants, a pacemaker, something else in there that works with the pacemaker, and of course, a replacement mitral valve. And each piece has a serial number. I carry a wallet full of cards with all the serial numbers.

That’s what brought a semblance of spring to my step. Not quite like the spring of youth, but I can walk, climb a few stairs. That’s something. That’s a lot of something.

CONFESSION

Time for me to confess a few things.

I’m having a hard time. My body and I are at war … and the body is winning. All my systems are out of whack. My gut is in full rebellion. I can’t sleep more than a few hours a night no matter what meds I take.

I can listen to audiobooks but I can’t seem to focus  on text. I’m having a lot of trouble reading your posts because I can’t stay focused on anything longer than a couple of hundred words. I’m best  in the morning. As the day goes on and my various body parts begin to crash, my attention span diminishes with each passing hour.

I look okay, but I’m not. Not yet. I’ll get there, but it’ll take time.

So I apologize to all of you. I can’t keep up. I can’t read all your beautiful posts though I want to. I’ll do more as soon as I can. Right now, just keeping up with comments is a stretch. More will come. Later.

ITCH!!

For everything, there is a season. This is my season to itch.

First, you wake up from surgery in screaming agony and after a while, it subsides. Little by little, it goes from agony to misery. The misery lasts months, though if you analyze how you feel, you recognize under the pain layer, you’re feeling better.

Until the itching starts.

itchingFirst, it’s a tickle. A couple of days later, the prickly feeling becomes a torrent of itching. Which you dare not scratch lest you open up one of your incisions.

I have seasonal dermatitis too. It kicks in every spring and fall. It’s not a disease, so there’s no cure and by itself it can cause frenzied itching. And hey, it’s spring, sort of. A bit cold and rainy, but according to the calendar, it is spring. So my dermatitis has clicked “on.” Add that to the healing incisions and it’s a perfect storm of sensation.

You can get drugs to dull pain. Sometimes you can get drugs to make pain go away entirely for a while.

Nothing makes itching stop.

It’s a sign of healing they say. Me? I hate it.

IF YOU LOOK GREAT BUT FEEL LIKE CRAP, SMILE!

I decided to take a selfie this morning. I look pretty good. I walk like Quasimodo and mumble “Oy” under my breath a lot. My chest hurts … not only the new incision, but the implanted breasts my surgeon built a few years ago.

As I feared, they’ve taken a serious hit in the course of this mess. Putting on some kind of support garment helps some. Between my chest (new incisions and old incisions), my back (new damage, old damage, calcified damage) and the oh my God itching … it’s a symphony of sensation.

But I look fine. My hair hasn’t (yet) fallen out. It has thinned, but not completely disappeared and I’m glad I didn’t precipitously cut it off, though there were times in the hospital when it was stuck to everything, in my bandages, my food, my mouth … it was a very hairy world for a while. At that point, I was sure I should have gone for pixie cut, just for the ease of maintenance. And not having it adhere to absolutely everything.

selfie - marilyn - me 4-27-14

The discrepancy between how I look and how I feel is more than a bit weird. From the mirror, out peers a healthy-looking woman who can’t pick up a small dog or a frying pan and creeps around the house hunched over mumbling imprecations, mostly in Yiddish.

Garry and I have discussed this, how strange it is when you look fine but don’t feel anything like you look. How do you deal with compliments when everything hurts?

Answer: You say “Thank you! ” Then you smile, showing as many teeth as you have remaining in your mouth.

As Garry says, “It’s all packaging. As long as the package looks good, print the legend.”

UNDERNEATH THE PAIN, THERE’S ME

I had a spinal fusion and laminectomy when I was 19. For the next 45 years, I pretended I didn’t have a problem. I rode horses, climbed mountains, went sledding and skating and hiking.

Then, one day, thanks to an uninsured driver who T-boned me because she didn’t feel like waiting for a green light, everything changed. There was nothing for me to fight or overcome. There was a flapping noise and I knew my chickens were coming home to roost.

Marilyn again

There was no possible cure, no new surgery to repair me. If I didn’t take reasonable care of my damaged spine, I’d be in a wheelchair. I gave up the horses, sledding and other dangerous stuff, but kept up the walking, hiking and an occasional wild ride on a roller coaster. Until the lump of calcification on my lumbar spine grew to the size of a small soccer ball and the bursitis in my hips made everything hurt.

Still I refused to give up my feet in exchange for a chair or scooter. I’m sure if I stop walking, I’ll never start again. So I save renting an electric scooter for those rare times when we’re at a theme park or something else that requires lots of walking. I don’t have the endurance to spend a whole day on my feet and the pain would take all the fun out of it for me and my companions.

Mind you, there have been a lot of other life threatening medical events along the way. But none of the other medical problems, no matter how potentially lethal, limited my life the way the arthritis in my spine has. Apparently for the last few years, my heart has also limited my activities. I didn’t realize what was going on. I had no reason to think my heart wasn’t just fine. As far as I knew, it was okay. So I attributed all the symptoms to something else: asthma, allergies, whatever. Now, of course, I know better.

I plan to keep doing as much as I can. Right now, I can’t do much. My cracked sternum is unhealed. When it is healed — another 7 or 8 weeks from now — then I’ll see what I can do.

The pain — and there is a lot of pain — is like a separate entity, perched atop the rest of me. Underneath the pain, I think maybe I’m beginning to feel pretty good. It sounds weird, I know, but the pain is a layer — like evil frosting. Underneath, there’s the rest of me. That part feels better than it has in quite a while.

So, I have to let healing finish. There’s a lot of internal as well as external healing that has to take place and there’s nothing I can do to speed the process … but a lot I could do to slow it down!

Patience is not my strong suit as I’m sure you’ve guessed. But this time, I need to find it. I can’t hurry bone and muscle. Trying to force it is likely to prolong the problem, not shorten it.

It isn’t easy! Especially with the weather turning warm at long last.

A MIDWEEK UPDATE

Time for an update!

The visiting nurse made her final visit today. I am officially able to be on my own. I have been assured no matter how I feel, I’m doing really well.

All four of my incisions itch. The big one down my chest, the medium one on my shoulder and the two smaller ones on my left leg. I dare not scratch but oh, how badly I wish to claw at those incisions!

My chest still hurts. I can’t pick anything up. It’s an interesting cocktail of sensation. My guts are in knots because it appears I have picked up a case of The Stomach Virus That’s Going Around. Garry has it, so it shouldn’t be any surprise that I have it too, but the timing could be better. Keeps things lively in an unpleasant way.

It turns out what’s been making the chest pain worse is my computer. Not the computer per se. It’s the picking up and putting back that’s making my sternum hurt, so now I have to ask Garry to hand the computer to me, then put it back when I’m done.

dell14Z

It’s almost as bad as needing help to go to the toilet. Okay, not quite that bad, but bad enough. And this is my ultrabook, the lightest computer I own. Not counting the tablet which is under-powered and runs Windows 8, a hateful operating system that renders it even more useless than it would otherwise be. Seriously useless.

But — I digress.

am getting better. I can’t see the changes from one day to the next, but I can see the differences from week to week. I’m a lot stronger than I was, but it’s infuriatingly slow.

Impatience has always been my nemesis. This time I have to find patience. I can’t let myself get stressed, can’t push the process. It takes time for bones to heal, for a new valve to settle down, for a reshaped ventricle to work properly. It’s only three weeks since I came home from the hospital. It will be at least another seven before I can haul a laptop without help.

I’d heave a sigh, but it would hurt.