If you're reading this post you might want to grab a snack and a comfy seat. I have a lot on my mind and am making some decisions, big ones, and right here is where my life is.
Today I took the electric trike out shopping. I had bought a woven trunk and mounted it on the rear of the trike. It's a vehicle that's definitely unique and had a lot of people checking it out when it was parked at the store. The new rear trunk means that my purchases are secured and the motor and battery pack are stored safely.
I've had a bad ear infection for the past couple of weeks. After antibiotics didn't work well, inhaled and injected steroids were added. So, I get ill from steroids lowering my immune system, and it takes more steroids to cure it. Go figure.
The steroid treatment failed to slow the disease. I saw the Eye Specialist yesterday. She wants me to go on Methotrexate and Folic Acid for a minimum of 6 months. So, I'm researching the drug. It has major interactions with most of my medications, and warnings with most of my other ones. So, I have to go off the daily aspirin for heart health, off the only medication that has helped the arthritis that has tormented me since 2001. Get rid of the rest of the medications that I take daily. Within a few weeks my immune system will be completely gone. There will be very few things which can be taken for illness. No vaccinations, most antibiotics are no-nos. There are side effects that can kill me with the first dose, others that can destroy organs, many that will keep me ill and miserable for some time.
There's some serious thinking going on right now, things that I've been considering for months still need to be resolved. What will happen if I take it? What happens if I don't?
What happens if I let the disease progress? Is there a chance that a treatment will be found? One that works? Are the risks associated with the drug worth it in order to see a while longer? How do I decide?
At this time my thoughts are to let the disease progress. I think that my quality of life is the deciding factor. Most of my sight is gone. Had the diagnosis been found early instead of taking two years, the tracks that my head and heart follow might be entirely different. The most that this disease can do to me is to take my sight. After denying, fighting, raging, bargaining, arguing for all I was worth since my sight began disappearing two and a half years ago, I have finally come to accept it. I'm not giving up by any stretch. If there comes an effective cure I will move mountains in order to use it. At this time there is no established treatment or cure for AutoImmune Retinopathy. Some treatments may, note the word may, slow it down for a time. There is no way to restore the rods and cones in the retina. Once they are gone they won't return. The risks associated with the medication will be great. Greater, perhaps, than I want to open myself to. I'm not happy about being blind, that's a given, but it's not ruining my life at all.
Life is permanently altered. There are things in my life that will now never happen. In the place of missing out on things I'm finding that so many new opportunities are opening up. Many things have been learned, new ways of doing things, of getting around. I'm living a much different life now, in many ways it has actually become much better than it ever was. I can indulge in every idea, every wish and dream that I've ever had. I can pursue every interest. I can do anything that I want to do or try. There are limits, but only ones that I put upon myself. Visual limits are there. So, I do things differently, I adapt. Learning Braille is a step in the right direction. I will master it.
My world is a lovely place. I cannot see dirty, or ugly. It's all beautiful to me. There are great benefits, big and small. I'm surrounded by beauty at all times from what I know I see and how I can remember things being when I had good vision.
I hear music better even with some hearing loss. What I hear are the instruments and songs that I had not paid attention to before. I'm listening to music styles which are out of my comfort zone, noticing birds singing, sounds associated with different things.
The life that I've decided works for me includes extremely simple meals at this time. Housework is much easier with fewer possessions and takes much less time. Much time is spent gardening, indoors and out. Flowers bloomed in three different rooms all winter long. Hobbies and crafts are in various stages of progress and/or readiness. I'm listening to books, music and news. Learning everything and anything at all. Braille and reading books by Stephen Hawking are currently keeping me occupied. I'm still working on the wardrobe organizing project. It should be a much higher priority due to more colors fading in my vision. We get to travel from time to time, and I've been an armchair traveler for years, learning about different places that catch my interest. There's a lot of freedom in being able to go places, both near and far. I have a new appreciation for ways to get around. Being unable to drive anymore was world changing, learning to get around with an electric trike changed my world in more ways. I go very slow, and not too far on it, but I do go.
The main thing that I have is the gift of time. There is time to adjust to being blind as each change occurs. I learn ways of coping with less and less sight.
I also have time to learn who I am. Getting acquainted with myself has been entertaining. I see myself enjoying a beautiful life, doing the things that I love doing, spending each day as a truly special day. I have a picture in my mind of how life is and will be. Each day born of dreams and spent creating memories, right down to the smell and flavor of the coffee that begins my day.
This is just a portion of my life. There are other things that I consider as part of my quality of life. Parts that are absolutely amazing and delightful to me. My life is a fairy tale, complete with all of the beauty, love and magic that that comes from the dream come true that is wished for and dreamed of from childhood onward. I want the life I lead to continue even with blindness.
I think I know what my decision will be.
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