Thursday, October 30, 2008

Bladder Botox, Take Two

I am in recovery from my second set of bladder Botox injections. They were done between 11 and noon this morning and I am just little achey now.

My urologist suggested that I save both of us time and trouble by getting them as an outpatient procedure at his office. It sounded good to me. Last time, I went to a hospital and spent the morning shuttling from one department to another before I received a general anesthetic and was taken to the operating room. Simpler sounded better.

This surgery scheduler checked with the pharmacy and the insurance company and discovered that insurance would not pay for Botox given to me directly. They would pay for it to be sent to the hospital, but not for me to pick it up. The urology office has decided to experiment: I am one of four patients for whom they paid for the Botox up front, hoping that the insurance company will cover it after the procedure. Of course, they also made me sign a piece of paper saying I will pay for whatever insurance doesn't cover, so I may be paying the price for their experiment.

Another difference is that the nurses used a "numbing agent," administered through a catheter, rather than a general anesthetic. That means I got to watch one nurse to train another as she prepared the injection. My urologist uses a bright blue dye in the Botox so that he can see where his last injection was. "You would think he could tell by looking at the blood," said one nurse to the other. She looked over at me. "You have that iPod turned on, don't you?" she asked. I did, but I could still hear her. "Pay no attention to that man behind the curtain," she said, evoking the Wizard of Oz.

The new guy on staff did the actual injections, with my urologist advising while he helped two nurses wrangle my spasming lags. I had warned the nurses about my new level of spasticity and they shrugged. "We'll handle it," they said and with the nursely practicality I adore, they did. they pointed out that, because of the dye, I was getting my bladder tattooed. I asked the doctor if he could do it in the shape of a rose, but he said urologists prefer kidney shapes. It's hidden, of course, so I have only their word for it. It is fun to consider some personality adjustments in keeping with my new, tattooed, self.

Even with a half hour wait for the numbing agent, we were done in an hour.

I am taking tomorrow off work, but judging by the way I feel now, I wouldn't really need to do so.

I hope the result of this set of injections is as helpful as the first set. When Western medicine has an answer it does a fine job.

Thursday, October 23, 2008

Dreaming Health Care Advocacy

A few days ago I had a dream:

I am at the doctor's office. He tells me I have a tumor in my breast that needs to be removed.

I say to him, "First of all, it isn't cancer. If it turns out to be cancer, I will make sure to tell everyone and have my family tell everyone how quick you were to offer an invasive surgery and yet you have nothing to offer to help me with this chronic illness!"

End of dream.

Last Sunday, we went to after hours care so that I could get an x-ray to make sure there were no fractures as a result of the fall that has put me in such pain. We went on Sunday so that Ralph could come along and lift me on to the x-ray table. Oddly enough, hospitals and doctors offices don't have anyone available to help me transfer from one surface to another. The x-ray came back clean. The physician suggested I follow up with my regular doctor in a week if I'm still in pain.

I got a massage yesterday, buying me a couple of hours of pain-free living. I have another scheduled for tomorrow. Also scheduled for tomorrow is a call to a local agency that helps people arrange care for their aging or disabled family members. This call is the first of what will probably be several as I try to get some help for myself and my "primary caregiver."

My dream tells me that at some future time I need to expand from self advocacy (at which I am a complete beginner) to advocacy for systemic change.

AARP has a fantastic viral video that teaches about the source of change. Enter your name into the widget below and enjoy.

AARP 08 Video
Enter your name to see who can bring real change to Washington.
First Name:
Last Name:

Thursday, October 16, 2008

Collateral Losses

I am still not doing very well at keeping this blog up, am I?

I have been dealing, lately, with several physical issues, most of which aren't caused by the MS, but are part of living with disability.

My hands have been increasingly affected by the MS. By the middle of the day, it's hard for me to type. By the time I get home from work, I feel like I have flippers on the ends of my arms. This does not encourage me to write.

New solution: software called Dragon Naturally Speaking. It is a wonderful program that enables me to talk into a microphone while the software takes dictation and the computer types. As advertised, it took only a few minutes of training until the software was very accurate. I tried similar software about four years ago and it was pathetic. I would get so distracted by all the mistakes the software was making that I couldn't follow through with my thought. Here I am, at my new desk using my new software and completely out of excuses for not writing. We'll see what happens from here.

Getting Dragon software didn't cost too much money but it did have a significant price: it doesn't run on the Mac. I have been self-righteously a Mac person since I started using a personal computer. Switching to a PC ha s been a bit of a wrench. Sometimes reasonable accommodations aren't convenient or enjoyable. I end up choosing the lesser of two evils.

I have one last toenail than when I last wrote. A few years ago when we moved from California, my big toes experienced some injury that I didn't feel. My two big toenails were bruised and damaged and haven't looked quite right since. Using the wheelchair all the time, I travel the world feet-first, my footrests holding my toes out in front of me. Sometime in the last couple months, my right toe was damaged again. I assume I smashed it against a door, since the only way I can get through doors without handicap buttons is to push them with my feet. The podiatrist I visited removed my toenail. It may or may not grow back.

A couple of weeks ago I fell. It was my usual not-quite-making-the-transfer and sinking fairly slowly to the floor. This time, though, I pulled a muscle in my right thigh. Since then, not only have things been painful, but I am unable to transfer without Ralph lifting me from one surface to another. This is a big blow to my independence.

I went to church la st Sunday and the service included an anointing for people praying for healing. I didn't expect it, and as soon as I went up front, I started to cry. I hope not many people could tell. My friend Carolyn, who is one of my angels, lent me her shoulder. She had polio as a young woman and uses a wheelchair, so she knows the frustrations.

I hope that this injury will heal and I will be able to regain some independence. Meanwhile, this is a wake-up call that I need to identify some additional support for us. Carolyn helps me understand that I need to take responsibility for getting what I need.

I am mad that I can't just turn my case over to some social worker who can identify resources and get me connected to them. Case management seems like a huge, tiring, undertaking. I complain that it isn't fair and that the health care system is broken. That may be true, and I often think that I should become more of an advocate for systemic change. What I need to do right now, though, is start making some phone calls. It is better to light a candle than to curse the darkness.