Every time I decide I am going to break up with my doctor, I fall in love with her all over again.
I went into NYC Friday morning for a belated visit. Originally, she wanted to see me in June before my infusion therapy. It didn’t happen. Then came summer with the anticipated railroad problems leading us to September. I cancelled last Monday because it was mid day, bad weather and the UN Assembly was in session. Glorious cool weather Friday. I wore my macrame type sandals. It was a bit cool but they are comfortable plus I knew they wouldn’t fall off if I had to go up or downstairs. I was walking for crap. We got into Penn shortly after 7:30 a.m. so it wasn’t horrifically busy. I was frightened. If I hadn’t been holding onto Tom, I would have been knocked over or fallen. He had my back for the escalators which have become another ring of Hell for me. It’s one thing getting on. It’s a whole other thing getting off. Then we had to cross 7th Avenue. Yes, I was already shot before I reached the bus. I started to become agitated and weepy as it was clear to me that NYC is gone for me. This is where I worked. This is where I can make real money and do something that I like. And it’s more than that. It’s the stimulation of the city – the clothes, the food, the lights, the culture. It’s closed to me. I can no longer do this. I struggle onto the bus. Tom has to lift my left leg to get me on The bus driver is awesome. She asks where I am getting off so she can make sure she pulls all the way in. I take a disabled seat. Somewhere in the 40’s, 50’s a sandwich delivery guy sits next to me with huge delivery bags. Uh, how am I going to manage getting out? Just breathe! Then in the 60’s a man with a scooter prepares to get on. My bus driver ejects the delivery fellow and the older lady across from me. “You stay” I am amazed when someone tries to push past him as he is leaving.
I am the first appointment at the doctor’s which is good. She calls out to me as she is coming in with her coffee. She spends nearly an hour with me. Sometimes, I am techy and sometimes I am so not. I recently figured out how to make Notes on the phone. So, I’ve been collecting all my concerns in a format that is accessible and legible.
First off, we admire my sandals as I tell her that I need a new spectral leg. She is referring me to a rehabilitation specialist. He will look at cane, spectral leg aka brace, physical therapy and the way I actually walk. This is good.
Bad, she thinks I should use the walker. The one that has been sitting behind the door, bought with an Amazon freebie.
She tells me how I am always so well put together and how important it is for my health. I have on the beaded and embroidered 3/4 length pants that the orthopedist thought when the beads showed up on the scan, that he had discovered a whole new syndrome. My therapist also says I am always put together and it’s good for my health. I miss getting dressed for work. I open my closet and mourn.
I have low blood pressure. My late former in laws used to marvel how low it was without medication. Due to Tom’s recent cardiac adventures and his obsessive nature, blood pressure is taken all the time. We even checked his machine against his surgeon’s and it’s fairly accurate. Mine is way, way low. Doctor says, “Are you dizzy or faint” No, that is my old stress reaction. I turn grey and my eyeballs roll up in my head. Doctor says, “What we say about people like you around here is that you are going to live forever. You are good.”
We talked about my drugs. Yes, she wants me to stay with the alpha-lipoic and the Biotin. Okay, as I have said before I have issues around my nails. They were bitten and ripped to the quick for years. A few years ago I decided enough and grew them. They have been long and hard since then. Last October I had to go to the salon to have them cut. This year, they are snapping like crazy and my hair is visibly thinning. Salon’s verdict on the nails – maybe they are too hard. Doctor’s question – what are you eating? Ah, here we go – not enough protein. This has always been challenging for me. I am so not a meat eater.
Now, I find this talk of food extremely interesting. When this journey started, I asked her boss about food and he pooh-poohed me. I took myself and my money to a nutritionist and she gave me what I thought was an insane diet and other doctors subsequently agreed. If she had only said, “This is the Swank Diet and it’s been used since the 1950’s.” I would have signed up. As things progressed, I discovered a bunch of different ways to eat that can address this. Two years ago, I stopped gluten for months and noticed the difference. Alas, I’ve fallen off the wagon. Recently, I saw that the institution that treats me has done food studies. In case you haven’t guessed it does make a difference.
My husband used to work at nights. He’d wake around 11 and I’d go to bed around 9. The last night he worked, I got up to go to the bathroom shortly before 11. I remember feeling very hot and not so well. The next thing was Tom shaking awake from a really great sleep. He awoke to find my body in the hall. We have a very tiny house. There was blood on my head. We never knew if I passed out and hit my head on the way down or hit my head and passed out. Lately, I have had episodes when I experience the same kind of heat and my glasses fog briefly. And the answer is still MENOPAUSE! She suggests also that I drink more water.
Now all this caused me to start thinking about my period, menopause and my affliction. People always laugh because I know the exact date it started. Easy, because it was Halloween. So, 40 years later in October I decided enough is enough. I willed myself for it to stop. Wait a minute. That’s when I became symptomatic. Something to ponder and research. Not sure where it will all lead.
We are now at the 25 feet walk. First time, when it started, I did this in heels. I tell her I walk like a toddler. She tells me I walk like me. So, not a good thought. This is the first time I have ever done it with a cane. I am terrible and slow. I miss walking I miss the speed, the breeze, the joy. Walking was how I figured things out. It seems like everything is being taken away.
Now, to the inspirational part, and I hate the inspiration part, attitude counts. I told the doctor about the woman I had met who was diagnosed this year and appears to have given up. She is anticipating the worse – making arrangements for ramps, etc. Here’s a difference, I told the doctor in the last few weeks, I seem to be experiencing MS fatigue. I used to be relatively tired all the time, waking for work in the 4 a.m. hour. This is different. It feels like dying, I guess. It is the most peculiar sensation. “Have you ever considered a nap?” I am my mother’s daughter. Maybe, just maybe if you have a high fever. Though I have memories before this marriage of drifting off during a Saturday afternoon radio program. She agrees that our mothers were the same and insists I need to nap. Here’s the thing – if I feel like I am dying, the last thing I am doing is closing my eyes and lying down. And my life is short and limited enough as it is. I will not waste what’s left of it napping. The other woman doesn’t nap. She stays in bed all day! My doctor admits that attitude is important. She starts to tell me about a patient group. I cut her off. I am so not interested in people who LOVE their scooters! Nope, this is cool. These ladies attend all the drug dinners for free, whether they can or cannot or want to take the drug. They get a paid night out to hang with their friends. This is a good idea.
I leave with recommendations for disability, physical therapy and Ocrewhatever (there is a small risk for breast cancer and I have the dense ones. I always picture them as saying d’uh?) I also leave more determined than ever to beat the odds. Why not?