I visited my favorite doctor last week. She is the only one of my original set of doctors I have kept. Despite her not being covered by my current insurance. She is irreplaceable. Unlike the rest of my doctors, she “gets me.” For me to start over and try to establish this kind of relationship with a new doctor? I’m not sure I’ve got that many years left to me. Or if there is another doctor like her anywhere.
I hadn’t seen her since before all the heart surgery in March, so we had a bit of catching up to. We talked about me, her, life, getting older, Garry, drugs and how some things — like marijuana — just don’t do what they did when we were young.
And the importance of feeling better.
Anyone who has been sick for a long time knows what I mean when I say “I just want to feel better.” There comes a moment in time when whatever is wrong with you has dragged on and on. It feels like an eternity, like forever. You can’t remember what it was like to feel good. You’ve done everything you are supposed to do and still, you feel like crap. Whether it’s cancer, recovering from surgery, anxiety, bipolarity, the pain of chronic illness — or any combination of the above plus whatever I didn’t mention — one day, you just want to feel better.
You really don’t care how.
Whatever it takes, whatever drugs, surgery, therapy, whatever. Just — make me feel better. I want a day without pain, without anxiety, without nausea. I want to feel normal or at least close. Whatever normal is. Because I am not sure I remember.
The problem is, doctors don’t see medical value in feeling better.
Feeling lousy isn’t a medical condition. And feeling better is not a definable goal for medical professionals. The doctor keeps telling you you’re fine … and you don’t feel fine. You are tired, in pain, crabby, unable to sleep. Nauseated. Exasperated. Fed up with everything.
Just two doctors — out of so many in my world — believe feeling better is a legitimate goal. One is my cardiologist and the other is my shrink. Technically, she is my psycho-pharmacologist, but shrink is easier to say. Her self-assigned task in this world is to help me feel better.
“After all you’ve gone through,” she says, “It’s what I can do for you. I can help you feel more like you used to feel before all of that horrible stuff happened.”
That she understands the concept is nothing short of a miracle. So I’m going to keep her. Despite insurance.
I went to the doctor today. I made a list of the things I needed to talk about, among them trying to get some Prednisone or something to make me able to actually enjoy my vacation in Maine in October. I just want a week off of the whole pain and misery thing. I checked with my cardiologist and he seemed to think a week of Prednisone would be fine, at least for my heart.
I know Prednisone is evil and will — with prolonged use — melt my bones. But really, I’m not asking for a long-term run. Just a week. One lousy week of living without pain.
Prancing? Like a 20-year-old? When I was 20, I was wrapped in plaster from my rib cage to my knees following a spinal fusion and laminectomy. I can’t remember ever doing any prancing even when I was a kid. But hey, he doesn’t know me yet. If we had a longer relationship, he would realize what an absurd statement that is.
Not only am I not doing any prancing, but we’re sharing our vacation with our best friends. He will be one month past knee replacement surgery. She’s almost as arthritic as me and she is way past prancing. Garry is in better shape, but he’s not bouncing around either.
I pointed out I was unlikely to take up bungee jumping or mountain climbing, but the doc was convinced I would do something stupid and potentially damaging to what we humorously call my body.
“You’re 67 years old. You’re recovering from massive and extremely serious surgery. That’s reality. You aren’t healed yet.”
“When,” I asked, “Is yet?”
“Six months,” I repeated. And I sighed.
I should be used to it. Maybe I am, but I don’t like it. Not at all. I just wanted a week off. One week, so I could walk, take pictures. Enjoy myself and not be in pain. Go out, find a moose unaware, take great wildlife pictures. In the wild, not in a zoo. But no. I have to be sensible. Bah.
I’ll deal with it. But I really wanted that week. One week without the pain. I guess it is too much to ask.
My body and I are engaged in battle. Body is winning this round, but I hope to prevail in the end.
Every condition, chronic disease, whatever that has ever bothered me is running at full throttle. Things that haven’t bothered me for decades are back. My rheumatoid arthritis is acting up. Every joint hurts. My irritable bowel is outraged and trying to kill me. It’s spring, the pollen is high and asthma is kicking my butt.
Of course all the heart surgery has wreaked havoc with issues I already had from the bilateral mastectomies a couple of years ago. Finally, there’s the pain from the recent surgeries. It’s much better than it was even a week ago, but it’ll be a few more weeks before I feel I’m over the hump.
I am good in the morning. Most of the time. From lunchtime onward, I slide downhill until evening when everything hurts. The later it gets, the more it hurts. I can’t figure out which pain is caused by what condition. Or maybe it’s the clammy weather. Or stress.
I want to feel good again. Is it too much to ask? Right now, it is … but I remind myself it’s not forever. It will to take a bit more time, but in a few weeks, I will be me again.
But late in the evening when everything hurts and I don’t have drugs to fix it … at times like this, I want to rant. I figure I’ve paid the dues; I’ve earned a rant.
Instead (usually), I go to bed. Becoming unconscious seems like the best idea of all.
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.
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.
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.
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.
They warn you when they send you home it will be hard, especially the first few weeks. They warn you about depression. It seems to be part of the heart surgery package and hits pretty much everyone to some degree. Some of us worse than others. The emotional healing component is a wild card. Assuming that physical healing proceeds without incident, there’s no predictable pattern — or much available help — for handling feeling.
There’s a sense of loss, that “something is missing,” though you don’t know exactly what it is. A sense of dis-empowerment, that you’ve lost your dignity, a part of your self-hood. There’s a sense of having been raped, assaulted, beaten down.
Some feelings result from the very real physical assault of all that surgery. Your body has been invaded, redesigned, twisted, opened, broken and put back together. You may not have been conscious when it was happening, but your body remembers even if your brain can’t recall details.
Waking up after the surgery, I knew something was missing, some part of me was gone and I was afraid to awaken until I found the lost piece. Eventually I bowed to the inevitable and woke up, but becoming conscious was accompanied by a profound sense of loss. I’m not who I was. I know I am — at least technically — better, but it’s hard to imagine ever feeling whole again.
Even after breast cancer and having both breasts removed, the sense of loss was nothing like this. There was pain, confusion, fear … but surprisingly little sense of mutilation.
The complexity of my feelings combines with a sometimes overwhelming physical misery. It makes me wonder why I went through all of this. To what purpose? I know the correct answers to these questions, but as the days wear on and evening approaches, it feels as if I am wearing a too-tight iron brassière. I can feel the hard metal straps cutting into my shoulders and my chest feels crushed. It’s hard to breathe, hard to even think.
I whimper and wrap myself in a heating pad, trying to soothe cramping muscles and twisted bones.
All systems are messed up. Digestion, breathing, skeleton … everything feels off. Sleeping is difficult. Finding a position that doesn’t hurt is a major challenge. I have a headache much of the time. The headache isn’t so bad … it’s just the “insult to injury” part of the process.
I have a little mantra I keep repeating to myself. “I can do it,” I say. “I CAN do it. I can do it. I can.” Whatever it is, I do it.
I can shower on my own. Thanks to one wonderful friend, I can do my bathroom stuff and actually get up and down from the toilet without the humiliation of needing help. I can do small things. Make myself a sandwich, toast an English muffin. Read a bit, Write a bit too. My back took a beating. Whatever they did to me in the operating room, I came out of there with new problems in new places. Oh well. I guess it will heal. Eventually.
My other mantra: “It will get better. It will be better. I will be better. I will be better. The future is worth living.” I mean it. But it hurts.
If it were not for friends and especially for Garry who bears the brunt of both my physical inadequacies and my emotional messiness, I’m not sure I would be able to go on. I know this is taking a lot out of him and it adds just one more layer to that invasive sense of helplessness.
It will be better. I can do it. We can do it together.
I just hope it’s worth it.
Today marks a week back from the hospital. I’m not sure what I expected, but I’m pretty sure this wasn’t it. So much didn’t go the way I expected. A friend said it was like taking your car in for an oil change only to discover you need a new tranny. I needed a new tranny, timing chain, rear axle and electrical system.
How could I have failed to notice that the central system of my body wasn’t working? How did I miss that? I was short of breath, true. I had been gradually limiting my activities. I stopped driving. I passed on activities that involved more than very minimal walking … skipping stuff that required I go up and down my own stairs. Gradually, I chipped away at life until my “outside appearances” were few and far between.
I was tired. Not sleepy-tired. Weary. I attributed each lifestyle change to something. Asthma. Bursitis in my hips, arthritis in my back. Blow-back from cancer a couple of years ago. And, of course, the all-time best bucket explanation for anything and everything — getting older.
When I was first informed that my EKG showed “issues,” though the doctors didn’t seem to feel I needed to know exactly what the issues were (did they know?) — when finally all the cards were laid out, I felt blindsided. I had been keeping track of my heart, getting an evaluation and EKG every year. Suddenly, from “no problem” to “big problem”? Heart problems don’t usually just pop up out of the blue. I still don’t know and probably never will if this was a case of misdiagnosis or some weird medical event that went unnoticed amidst the myriad other health crises which have punctuated my last decade and a bit.
Do I blame my doctors? To a degree. For failing to promptly and clearly inform me of what was happening and for giving me terrible, medically unsound advice. If I had followed it, I’d be dead.
What I expected
Cardiomyectomy (shaving down the overgrown muscle in the left ventricle that was stopping the flow of blood through the aortic valve, causing the mitral valve to work double-time. There was hope the mitral valve would self-repair if the aortic valve was unblocked. Surely, at most, the mitral valve would need repair, not replacement. (Ha!)
What I got
A cardiac catheterization, a totally disgusting, intrusive horrible test that requires you be awake — the absolutely last thing you want to be. Not like you get a choice.
The next day, the aforementioned cardiomyectomy, a bypass and a mitral valve replacement made from bovine tissue (thank you Bossy, wherever you may be).
Three-for-one. Woo hoo!!
But that’s not all, no-sirree. After another few days, when my heart refused to beat on its own (stubborn to the last), it was back to surgery for a pacemaker. Now everything in my world runs on batteries, including me. Sure hope those batteries keep going and going and going.
Waking up – Let the games commence!
Round one: They tried arousing me, but I woke up fighting, struggling. Apparently tried to deck the recovery nurse. I do not remember this, but I have no reason to doubt it. Under the circumstances I’m sure I wanted to deck someone. They put me back under for another 24 hours. They were protecting me and/or the nurse.
“Tough customer,” they said.
Round two: I heard Katy, my new recovery nurse calling me.
“Marilyn, wake up. You’ve had your heart surgery.”
“NO,” I said. Liar liar pants on fire. They were saying it was Friday, but I knew it was only Thursday. What’s more, I was in the middle of a word game and the letter “U” was missing. I could not wake up until I found it.
“Marilyn, you have to wake up.”
“NO I DON’T,” I said.
“Would you like to see your husband? Your friend?”
“You have to wake up. It’s time to wake up.”
Ultimately, I realized the letter “U” was a permanent loss and they were just going to keep annoying me until I stopped saying NO. So I opened my eyes. Instantly knew why I hadn’t wanted to wake up.
Question: How much pain can you be in and still live?
Answer: A lot.
Thus I reentered the world. Screaming in anger, pain, outrage and helplessness. I’m still screaming. Silently.