a really sad day

I’m planning to hire someone to finish a small digging project that I can’t complete due to the pain. I’m hurting so much that I called Mark (my orthopedist) today about the possibility of a partial shoulder replacement on the right side. The one he did on the left 37-months ago has just recently reached what I suspect to be its full potential for improvement, and I would anticipate just as slow a recovery on the right side, but my condition certainly won’t get any better if I don’t have the surgery. A full replacement would be more likely to alleviate more of the pain (I have no thought that I will ever be pain free), but it would also restrict the kinds of work I could do, and I had rather be in pain and able to work than to not be in pain and not be able to work. My problem now is that the pain is so great that work is out of the question, and I am also concerned that I have now worked myself into this level of pain a few times, and I am beginning to worry that I will eventually do so much damage that the increased pain level will become permanent and maybe even unbearable. I’m also concerned that Mark either won’t operate at the hospital my insurance will send me to, or else he will pronounce the joint too far gone for a partial replacement—and maybe even for a full one (joints can deteriorate to the point that the only option is to either do nothing or else to fuse the bones). Then again, I might feel better in a few days, and say no to another such nightmare.

Today is a lovely day, and as I look out the window at a project which I can’t finish, I am practically in hysterics. If it was work I hated, I could live with hiring someone, but how do I live with giving up things I love, one after the other? Depending upon one's perspective, there are many valid ways to interpret life, but certainly one of those ways is to regard it as a slow—or sometimes fast—fall into ruin succeeded by death, and that’s the one that is before me at the moment.

Sidney, the baby that I call my grandchild, was here yesterday. As I reflected upon the growth she has experienced in her first two months, and the growth that she will continue to experience for nearly three decades, I envisioned her as a flower that I will never see completely open, but I also remembered that her growth will someday turn to decay, and she too will increasingly fail until her life finally comes to an end. I then recalled a song that goes, “he not busy being born, is being dying," and since it's from my favorite movie, I put it up top. 

What to do? I ate some pot, but it made things worse. Pot quite often does that. I never know what it will do from day to day or even from morning to afternoon, but when it’s bad, it can take whatever is bothering me, multiply it by a factor of ten, and rub my face in it as if into fresh shit. Getting high on pot should not be taken to imply that the user will necessarily have an enjoyable experience.

The picture is of my Grandpa holding me in 1950. While holding Sidney, I remembered that picture, and I knew that, despite his dour expression, he must have felt with me somewhat as I was feeling with her, for I know he loved me. There is something so hopeful about new life that I can't imagine anyone not loving it, although my cat, Brewsky, certainly gives an excellent imitation.

Update

I am now living a life in which I am desperate for sleep. I don’t know why I’m in such pain, but since I felt similarly after my previous surgeries, only to eventually reach the point where I could sleep for up to four hours at a time, I can but hope that this time will be that way also. After all, I only had my third surgery nine weeks ago today.

Before my final awakening this morning, I dreamed that I flew bodily to the home of my friends—long since dead—Jim and Doris Bateman. I was so happy to have surrogate grandparents whom I could drop in on at any time that I cried, partly out of gratitude and partly because I couldn’t allow myself to believe that I was really welcome. When I awoke, I was desperate (it seems that I’m desperate about everything anymore) to have such people in my life again. I then realized that I do, really. I have Bella, and I also have a couple of elderly neighors who would love to have me visit. It’s not the same though now that I’m 62. Sadly, the time for grandparents is past.

I’m taking fewer narcotics because they don’t work well enough (outside of elevating my mood) to risk liver damage. Double doses of sleeping pills still deaden the pain enough for me to at least rest a little, although I worry far more about becoming dependent upon them than I ever worried about Demerol or Dilaudid. I’m still pursuing marijuana, and, because of my desperation, I have placed what is surely an inordinate amount of hope in it. Meanwhile, Obama just reversed his promise to not bust medical marijuana users, doctors, growers, and everyone else affiliated with the drug. Because Peggy is a nurse, I worry that she might lose her license simply by being married to me—sort of a collateral damage scenario. The waste, bigotry, and short-sightedness that is America leaves me aghast. I violate my conscience everytime I pay taxes. I mustn’t dwell on that though…. I see that the mailman just delivered my seventh medical bill of the week.

When I go to a doctor, I take along a summary of my problems so that I can express myself succinctly and not forget anything. The rest of this post consists of my summary from last week.

Treatments that have been of little or no benefit in relieving my bilateral shoulder pain:

Three shoulder surgeries in two years
Numerous steroid shots
Several courses of physical therapy
Dalmane, Restoril, Ambien, Lunesta, Hydrocodone, Oxycodone, Ultram, Demerol, Dilaudid, Naproxen, Piroxicam, Celebrex, Neurontin, Elavil, Tofranil, DMSO, Ginger, Turmeric, SAM-e, Habanero Peppers, Topical Anesthetics
Ice packs
Massage, Yoga, Acupuncture
Sleeping in a recliner

It is a good night when I am able to sleep two hours in a row before the pain awakens me, at which time I have to take more pills, get a fresh ice pack, or stay up for awhile. The pain makes it necessary for me to sleep entirely on my back, but my middle back hurts so much in that position that it combines with the shoulder pain to keep me awake.

Before the onset of shoulder pain, I enjoyed yardwork and handyman projects; but I have to be very cautious about such things lest the nighttime pain becomes so bad that I am challenged to sleep at all. I also enjoyed camping, but the pain now prevents me from doing that as well. Life as I had lived it for decades ended in 2006.

I’ve spent 4 ½ months out of the past two years in a sling, and 4 ½ additional months during which I couldn’t lift anything heavier than a cup of coffee. Now, I’m facing at least one more surgery. As with other treatments, I will submit to it simply because I am desperate for relief and don’t know what else to do.

Other complaints:

Burning pains in both shins was diagnosed by one doctor as complex regional pain syndrome and by another as syringomyelia. A third doctor disagreed with both diagnoses but didn’t have one of her own.

Raynaud’s Disease in both hands.

Advanced osteoarthritis in my left knee accompanied by a Baker’s Cyst and chondromalacia (a 2006 knee debridement failed to help).

An osteonecrotic C-5 vertebra that was initially thought to contribute to my shoulder pain, although a vertebral biopsy and a series of steroid shots to my neck failed to reduce the pain.

Sleep apnea for which I use a CPAP.

*Photo by O'Dea

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.