The way today went was a perfect microcosm of my life of the last 10-ish years.
Had to cancel brunch with my dad and Marilyn because I did not feel well.
Then I had to ‘just say no’ to The Scooter Store. Let me explain.
I got ready for my quarterly appointment with the Pain Doctor. It is impossible not to fall the tiniest bit in love with the man who writes me three prescriptions of various strengths for medications that will take the edge off of the agony — and then several more creams and nerve blocks that will keep me from hanging myself when those wear off after two hours.
So I love Dr. A., the Scooter Store had called him to make sure he knew that I was coming with a mobility questionnaire, and I had spoken to my other Dr. A about my expectations about the whole thing. It was all set up to be just dandy. Nevertheless, things did not turn out the way I expected at all.
To avoid confusion, I have two pain doctors, both Dr. As. Dr. A of the prescription pad, and Dr. A of the solutions, the psychologist. I will speak about him in greater detail another day, but he plays an important role today as well.
Yesterday I saw Dr. A of the solutions, and I told him that I was really having trouble with pain at night, with sleeping, yadda yadda yadda. He asked me a good question: what did I think Dr. A. of the prescription pad would say in our appointment today. I could easily predict what he would say: my spinal stenosis is to blame. Get another one of those steroid injections in the spine. God, I hate those things. They hurt like the doctor used a nail gun to inject the steroid (not that minute, but about four hours later). I insisted that my issue is related to my aneurysm surgery, not the stenosis (diagnosed with an MRI — L4/L5). So, Dr. A. of the solutions showed me a diagram of the nerves. Guess what? The nerves running from the spinal Lumbar 4 and 5 connect precisely to the places I point to where it hurts on my legs. So, I stand corrected (or more accurately, I lie down on a heating pad with my legs elevated, corrected).
Thus, I went in to the appointment with an open mind, expecting that, hate it or not, we would arrange for an injection. Nonetheless, I did not expect, when I got there, to find Dr. A. of the prescription pad, with the mobility study in hand, saying, “Look this thing is 15 pages long. It takes an hour and a half. I can’t possibly do this with you. If you would like to have it done, someone in my Maryland office does it for a fee of $10 per page.” However, he confessed: “Doctors hate these scooters because they actually make the patients worse. In ten years, your legs will become even more atrophied than they are now. Are you sure that is what you want?” It is of course difficult to capture tone of voice. Persians tend to run toward the hot side of the faucet, but it felt to me like he was giving me wise advice, brotherly or fatherly, rather than being patronizing. I certainly do not want to be 57 and unable to walk (something he strongly suggested as he continued to speak). And, as it is, my ankles are about as big around as your wrists.
One of the warnings he brought up, though, was that I might be unable to use the stairs soon. “Wait a minute,” I said. “I am not able to use the stairs as it is.” I explained the issues I have with delayed pain, waking up in the night screaming. I told him that after my short jaunt to the doctor today I would have lots of pain, that I don’t go very many places and that I don’t like my life very much.
He suggested that we do an MRI and X-ray of the spine to make sure there is not some sort of issue with my spine that is causing me to have ridiculous pain (for which, obviously, surgery would be required). I remain extremely skeptical about any sort of surgery for someone with VEDS. We tend to have such awful, lengthy recoveries.
“But in the meantime,” I asked, “what should I do?”
“Just go and walk anyway.” I suppose I understand. I definitely don’t want my legs to atrophy too much. Think about it, though. How inclined would you be to go anywhere and walk any distance if you knew of the hell to come later on (and that no combination of painkillers and muscle relaxers would touch it)?
Leaving, I had the most bizarre mixture of relief and lightness (hooray! I don’t have to deal with some nasty machine and its weight and bulk around me) along with pure frustration: he doesn’t get how this disease affects joints, muscles, tendons to give the nastiest drilling pain fairly constantly. It is so constantly there, I don’t even describe it to him when he asks me what hurts, so it gets left out of the treatment. Then there is the awful nerve pain like hot electric wires fallen in the street and snapping around at the cars and the people like a fierce reptile. These are moments when all the conflicting and unfair information stops computing. Just for a minute, or for an hour, before I talk to someone on the phone — today poor Margie had to hear me cry and whine, and then my angelic mother — I just feel like driving my car off of a cliff (like the really cool ones they have in California that plunge right into the ocean).
I have been through being disappointed and hoping I was on my way to finding a better way to manage my pain so many times, only to get to the doctor and have him hear only about 33% of what I am saying, that I am getting very, very good at driving and crying.
So, enough of the pity party. I got home, talked on the phone (as above) and realized that I have writing and painting to focus on, and not this to worry about. No sympathy please.