Bella

I called Mark’s office (Mark is my orthopedic surgeon) on Tuesday saying that my pain level was through the roof, and I needed to see him. His assistant called back and said that Mark didn’t think that would be necessary. I was seriously perturbed, but decided to give the pain another day or two before I insisted on coming in.

Peggy went out of town on Wednesday, which was just as well because I was awake nearly all night Wednesday night. I repeatedly lay down, but each time I did so, the pain drove me up again before I could get to sleep. Over a period of five hours, I took twice the prescribed dose of Dilaudid plus the maximum doses of oxycodone and Neurontin. I also drank some vodka, but I still couldn’t quiet the pain. It was a long night indeed, yet I wouldn’t say that it was an altogether bad night because, over the years, I have discovered within myself a fortress of serenity and optimism that the pain cannot penetrate. I don’t mean to brag, or to say that no amount of pain could reach it, yet I often stand amazed by my ability to remain upbeat against such a raw, unremitting, stabbing force.

I called Mark’s office Thursday morning, and was told that he could see me at 1:00. I worried about driving after taking so many drugs, so I asked Bella (at 87, she’s the oldest member of my atheist group) to chauffeur me. Mark checked me over pretty good, and then said that my excessive pain was probably caused by two things. One was overdoing my new exercises last week, and the other was the fact that narcotics simply don’t work for me anymore.

“You’re saying what I hoped you would say,” I offered (I had been afraid he would have to redo the surgery), and then I told him about all the drugs I had taken the previous night. Before I could finish, Bella chimed in, “Tell the doctor about the vodka. He’s not supposed to wash his narcotics down with vodka, is he doctor?” “Oh, my god,” I thought, “I’ve found myself a Jewish mother, and I’m not even Jewish.” (I think Bella was disappointed that Mark didn’t give me a hard time about the vodka or about piling on the narcotics.)

As we were leaving the office, Bella twice observed, “He’s really good looking, isn’t he?” Well, the truth is that I almost didn’t go to Mark because in his picture, he looked like what he is, a jock. Yet, I get along with him about as well as any doctor I’ve ever had. Two hours after I got home, Bella emailed me a list containing everything Mark had suggested. My new Jewish mother is just too cute.

On surviving yet again

Miscellaneous experiences and reflections

Three shoulder surgeries in 25 months. If you don’t think that sounds like fun, you really ought to try it sometime. This was my first joint replacement though, and recovery should be easier because less soft tissue was involved, and it’s soft tissue that takes forever to heal.

I remember getting a nerve block just before they rolled me into the O.R. at 7:30 Friday morning, but the O.R. anesthesiologist must have cold-cocked me the minute I arrived because I don’t remember anything after my gurney hit the swinging doors. I don’t even remember waking up in recovery or being rolled upstairs to my room.

Because I’ve lived on narcotics for so long, they no longer work well, so my first night in the hospital was hell. I had a PCA (Patient Controlled Anesthesia) pump that injected a xylocaine-like drug into my neck, but when the main block wore off in the middle of the night, the PCA didn’t touch my pain, so I was given intravenous morphine, Dilaudid, and oxycodone, all within ninety minutes and all without effect. Nurse Jen then called Mark (my surgeon) and he told her to double the Dilaudid, but even that didn’t help.

Jen then said “I don’t mind waking doctors up in the middle of the night, so if you think of something else that might help your pain, you tell me.” It soon hit me that I needed Neurontin along with the Dilaudid, so Nurse Jen woke Mark up a second time and got me a prescription for 900 mgs of Neurontin, and the two drugs together enabled me to sleep three hours for a two night total of seven hours. (Mark hates the drug, and he knows that I know this, so I laughed about him being awakened in the middle of the night to prescribe it.) As you might imagine, Saturday sucked, yet if I hadn’t suggested the Neurontin, no one else would have thought of it, and I wouldn’t have gotten any sleep.

Thirty-six hours after surgery, I could barely walk 200 feet, and I needed Peggy’s assistance to go that far. Twenty hours later, I came home and walked 2,000 feet all by myself. Today—three days post-op, I walked a mile.

I won’t take a medicine unless I know what it’s for, and this meant that I sometimes turned down medicines while I was in the hospital. If I asked a nurse what XXX was for, and she said, “I don’t know, but it’s on your schedule, so you need to take it,” I didn’t take it.

After I was put into a room, I was surrounded by seven machines of one kind or another, and I was hooked up to four of them around the clock. I literally couldn’t stand up to use my urinal without a lot of wires and tubes becoming entangled. Also, some of these machines had alarms that kept going off for no good reason. I finally insisted that the worst offender be disconnected, and after three hours of serious bitching on my part, it was.

My main physical therapist was an Aussie guy who didn't want to talk about anything but his diabetes and his desire to move back to Australia for the government run healthcare. I kept thinking: “I wish you were there now, dude; I wish you were there now.” If I had it to do over I would have asked for another therapist, but all it takes is a moment of weakness, and some selfish bastard will steamroll you every time. I’ll still complain about him, but doing so after the fact will be less satisfying.

I think that most nurses and doctors respect a patient more—and treat him better—when he’s not mindlessly compliant. As for the ones who are bothered by it, I assume they’re on a power trip, or else they’re so lazy that they resent being forced to actually think for a change.

I had my yearly physical just before my surgery, and, just for the hell of it, I called my internist “Doctor Kirk” (Kirk is his first name). I hadn’t called him by his title since I started going to him 21 years ago, and he looked flabbergasted. I interpret an insistence on being addressed by a title as indicative of a need to have people brown-nose you, so I guess it’s just as well that I’ll never meet the queen.

The anesthesiologist who performed my nerve block was so concerned because I’m “not narcotic naïve” (meaning that I take a lot of narcotics) that he came by twice on his days off to check on my pain level. I wanted to leap out of bed and kiss him. Doctors like that are to die for.

I’m pretty sure that a nurse stole some of my Dilaudid, but I believe you should be 99% sure before you formally complain about such a thing, and I was only at 98.5% (although I did mention my suspicions to her).

I’m sure that some of you wonder if I’m ever tempted to pray given that I’m in chronic pain and have had numerous surgeries. No, I’m not. When someone tells me that their oncologist had “given up” on their Aunt Matilda, but that god dropped by and healed her cancer, I think about how much more impressed I would be had god re-grown her missing leg, or eye—or even her missing toenail. Funny how religious people only pray for things that might happen anyway. Why is this, religious people? Why not ask god to raise the dead or at least re-grow teeth? I mean, jeez, how difficult could a bicuspid be?

Finally—and for the hundredth time—allow me to warn you against ever allowing yourself to be intimidated by a lot of diplomas and certificates, or by a bigger than life personality. I promise you, you will occasionally have an idea that is so brilliant yet so seemingly obvious that you will be appalled that the experts overlooked it. Yet, they did because even the most brilliant, caring, and educated people suffer from the all too human tendency of falling into a rut.

The state of my health

I’ll be lying awake in pain from osteoarthritis, syringomyelia, chondromalacia, a Baker’s Cyst, and an aching back, but I’ll be high at the same time because I will have taken a few Percocets or a couple of Demerols. Anyway, I’ll be lying there unable to sleep—partly because of the pain, and partly because being high makes my mind bounce all over the place—and I’ll think to myself: “Snow, you really could put yourself to sleep, you know. All you would have to do would be to take a maximum dose of one narcotic or another and a maximum dose of one sleeping pill or another plus three Neurontins, two Tofranils, and one Requip, and wash it all down with a shot of vodka… Okay, forget the vodka, at least until I build up such a tolerance to the pills that they stop working.” Well, it’s tempting sometimes because I’ve been lying awake most nights for years. Of course, the downside would be that I might die, or the house might burn down around me without me waking up until the roof fell on my chest.

I take a fair amount of scary drugs, and sometimes I enjoy them, but I never take more than I need, and rarely as much as I need. I sometimes wonder which would actually be worse for my body, taking enough pills to make me sleep, or the exhaustion I experience from never getting enough sleep. I just know that I take more pills than I ever imagined I would, and, as a consequence of the pills and the pain, I never feel really good anymore, and I never feel really intelligent anymore either. In fact, I worry about how much more I can handle before my organs start to fail.

I got another referral to a neurologist (the same neurologist who did my vertebral biopsy when my C5 turned up osteonecrotic—aka dead), but she won’t see me until I get another MRI, but I can’t get another MRI until insurance okays it, but insurance can’t okay it until my orthopedist submits the proper form. Insurance denied the Synvisc injections, so I have that on appeal, only I have no idea how speedily the orthopedist’s staff is moving on it. I just know that medical staff people tend to thwart a patient at every turn if he becomes impatient. I think this is because overpaid doctors, who are mostly male, treat underpaid staff people, who are mostly female, disrespectfully, so staff people take it out on the only people who are lower on the totem pole than they are, the patients—especially the male patients, although I am not too sure about this part of my theory. But anyway…

The steroid shot I got earlier this month has already stopped working, so I’m positively screwed, pain-wise, until I either get the Synvisc, or the surgical neurologist cuts me open again, or the orthopedist cuts me open again. I’ve been waiting for one thing or another to happen for years, and the glacial slowness of the process really makes me envy people who are so rich that they can get on their Lear Jets, fly to the top specialists, and plop a hundred thousand dollars on the counter and not miss it. They can no doubt get themselves moved to the head of every line too, but I wouldn’t do that, and I wouldn’t mind even a little bit shooting any rich person who did. Of course, that's a politically incorrect thing to say just as saying that I sometimes enjoy being high on narcotics is a politically incorrect thing to say. But, you know, my fondest dream is that I would never need another pill for as long as I live. As for shooting rich people, I think we could do with a few less of those bloodsuckers.

Baxter's not the only one with problems

Peggy had an ovarian cancer scare last month after her yearly physical, but blood tests, two ultrasounds, and a visit to a surgical gynecologist made it seem unlikely. The only way to rule cancer out completely would be an ovariectomy, but her surgeon recommended against it. Peggy had initially said, “Get this thing out of me!” but she trusted her doctor enough to leave it in.

Yesterday, I went to my orthopedist, Mark (see photo), because my own pain has been through the roof lately. Of the many narcotics I’ve tried, I still have a good supply of Vicodin, Norco, Percocet, and Demerol, but none of them help much, and they sometimes make me very ill. I also have the sleeping pills Ambien, Lunesta, Restoril, and Dalmane, all of which work better than the narcotics.

When I go to a doctor, I usually give him a written overview of why I am there, and what I want done. Mark usually does everything I ask. Yesterday, he gave me a steroid shot in my left shoulder, a prescription for Tramadol (a painkiller), and a humongous prescription for the sleeping pill Dalmane (Dalmane is so good that I call it "The Great God Dalmane.") He also agreed to hyaluronate injections (a joint lubricant).

I love Mark. If there were only one thing that I could counsel you to do if you should need surgery, it would be to find a surgeon whom you trust technically and as a caring human being. I’ve had the uncaring kind twice, and I promise you, if you don’t like your surgeon before surgery (no matter how good everyone says he is), you will want to murder him after surgery when you are overwhelmed with pain and despair, and he doesn’t give a rip. I can’t overemphasize the importance of having a good rapport with your doctor. The following is what I wrote for Mark yesterday.

“Pain in my left shoulder still awakens me many times each night and requires ice. Pain in my right shoulder also continues to be a problem. At times, it bothers me almost as much as the left. Bilateral shoulder pain in combination with bilateral knee pain has made both hiking and handyman projects disagreeable if not impossible.

“I saw a pain specialist in April due to shoulder pain and to sunburn-like pain in both shins. My internist said I had Chronic Regional Pain Syndrome, but the pain specialist suspected syringomyelia, and prescribed Neurontin and Tofranil. They helped the shin pain but did nothing for the shoulder or knee pain.

“I am here to get your thoughts about the continued left shoulder pain in particular, and a recent and severe increase in pain in both knees and both shoulders.

“I would also like to discuss alternatives for pain relief. The narcotics I’ve tried don’t help much, and they make me itch too much to sleep. Sleeping pills continue to be my best option—especially Dalmane—but the pain still awakens me ten times or more times each night.

“I read that Tramadol is sometimes used for moderate to severe arthritic pain, and would like to try it. Ultrasound is another option, but I haven’t found anyone who uses it, and my PT said the home units are a waste of money. I would also like to talk about hyaluronate injections—read the enclosed info at your convenience.

“I’m wondering if steroid shots might also help, although I’ve had mixed results from them in the past. I’m especially concerned about any harm they might do to joints.

“I’m now more open to the possibility of partial shoulder replacements, although I had rather pursue any reasonable option before agreeing to a joint replacement.

“In the last nine days, I’ve intentionally lost four pounds to make things easier on my knees, and I’m experimenting with a gluten-free diet. Other ideas would be appreciated.”