It has been quite a while since I have felt the need to write. My disease continues on its course, there are adjustments in my life to be made. I spend much of my time painting. Sometimes 5 or more hours a day, and late into the night. Most of my drawings are Mandalas. I feel a sense of calm and peace when I am painting, everything else falls away and I am only that which is painting.
I spend time listening to audiobooks, somehow my computer and Kindle have developed this blurry double letter thing. I am sure it is the device, but it has spread to the bookshelf, alas.
I will never sing in the opera or dance the, well, dance anything again except the Hand Jive. At this point I am in gratitude for being able to walk with a walker short distances. There are some things I simply don’t have to worry about any more which include sunscreen, mammograms or unprotected sex with strangers. Unlikely as that is, or has been, in the 45 years of a monogamous relationship, I am still keeping it on the list.
What has called me to write now is because I bet you want to know the details of what it looks like to have a disease that is so rare that you are more likely to find a lump in your breast while having unprotected sex with a stranger without wearing sunscreen.
I have moved into having “home health care”. Which means instead of spending an hour having someone help me get ready for an appointment, then bagging out because I am exhausted from getting ready, all my services come to my house. O.T., P.T., speech therapy and a nurse visit, both a couple times a week. I go to my doctor’s appointments and church. So, besides the rare times I can talk someone into taking me and my scooter someplace, or go to Dick Blick, the Seattle art mecca with a huge selection of Tombow watercolor pens after one of my many doctors appointments, I am pretty home bound. I have discovered that I can order from Dick Blick on line, so Chuck has taken my credit cards and put them on the top shelf. I faint if I lift my arms up, drat.
The home health care is great, but a little weird to have so many people in my bedroom. The inner sanctum of my house. I now have an official “visitor’s chair” which is used by health care providers and good friends coming to visit, preferably bearing donuts. Every caregiver asks me the same questions, possibly hoping to catch me in a lie about my last fall or the amount of donuts I am eating. One of the questions they all ask is about new symptoms. So this will be a good place to catch you up with The Days of One of Cathy’s Lives.
In our last episode I had just fallen trying to get the credit card down from the top shelf and straight out lied to Chuck about the incident. I had caught myself on the way down on a chair and no bruising occurred so I felt I was within my rights, only to be busted when the neurologist asked me about the last time I had fallen.
My shortness of breath and swallowing issues led to the purchase of the most expensive bed in the world, a king size sleep number adjustable bed that tracks how you slept, your pulse and rate of breathing. My grandchildren are enjoying pretending they are on a plane and need to bring their chairs into their full and upright position, as they push the button that brings the top half of the bed up.
The full and upright position is helpful for me too because I have to sleep now sitting up. I tend to faint when I am flat, and find it difficult to catch my breath. So naturally I had to have a third sleep study. I swear the new bed ratted me out, and now I am moving into the wonderful world of oxygen. At this point I don’t actually have any, besides what Mother Nature has gifted us, as in “it’s in the air”. But there is plenty of talk about needing more.
The amazing and wonderful thing about our new bed is that Chuck bought it so we could continue to sleep in the same bed. I love that. What could be sweeter than to know that I will never have to be in a hospital bed and that we can always cuddle.
I am being “fitted” for a wheel chair, not that I need one now I am told, but it is always good to know these things. Has someone ever offered you with a wheelchair fitting? Maybe at a fair or something? Offering the newest model at a special fair price? That booth would be right next to the coffin fitting booth. I did read that Walmart is now selling coffins. I have said I would never shop at Walmart, maybe I said if I was ever to shop there it would be over my dead body. For those of you who think coffin jokes are in bad taste, please note that morgue humor is on my allowable list along with sunscreen.
Another big shift for me is I am now on a pain patch, which is amazing for someone who has had years of pain, why didn’t someone think of this before? It is wonderful, but the disposal method is very odd. I remove the patch, put it on a special sticky paper, which folds over another sticky paper then carefully placed in a hermetically sealed jar which is picked up by armed guards. Apparently the used patches are quite popular, which explains all the people lurking around nursing home garbage cans. Next thing you know addicts will be tackling old people, stripping them bare in search of pain patches.
Now for the biggest most horrible change and that I just spit out whatever is on my mind. I know I sound perfectly well at this moment, except for the coffin joke, and the unprotected sex comments and the admission that I lie about falling. Okay, maybe my new lack of govener is showing a bit, but I have had some really bad turn-a-phrase incidents recently. I have offended over 30 members of my family, many of whom, both friends and family, have un-friended me from Facebook, which is like being both excommunicated and shunned and the same time. I will say that all my close loving friends and family all still love me, knowing I have always been a bit quirky, and nothing could stop them from loving me.
So there it is, I have no interest in shopping for anything but Tombow pens and watercolor paper. I will try to stop painting long enough to write again soon. I had to find something else to do tonight because I am on painting restriction because of my crazy cramping, which has curled my right arm up like a pretzel. This has gone pretty well for one handed typing.
The truth is some days I just panic, thinking about what is coming. Which is why I am incredible thankful for my spiritual practices that have strengthened me to deal with the realness of life. I highly suggest, whatever your tomorrow looks like, to stay in the present moment. And hang in there even if you say something stupid. Love has a way of mending fences, and even a brain now and then.
Welcome to my blog. Here I will write about all things Cathy.