Sitting down at my computer and thinking about how I want to update you, my caring community (which I’m beyond thankful for), I realized that I no longer want to use the word “sick” to define my present journey.
Instead, I want you to picture me kayaking through the canyons of autoimmune national park. In my mind I’m in this canyon in southern Utah on the Colorado River. I’m in a brand spankin new kayak with an umbrella to shield me from direct sunlight when the water is smooth. The umbrella will be stowed inside somewhere in rough water and I’ll have a wet suit on or something. Whatever. The main thing is that I will be in the adorable little boat, moving through whatever is to come.
At present the river in front of me is uncharted. I went through the bile acid malabsorption stretch with a very smart guide who gave me a tool to fix that and I am happy to say it’s been resolved, sort of. No one really knows why I am not absorbing bile but it is presumed to be because of the departure of my gall bladder. There is this little bit of information in the background that my small bowel isn’t absorbing multiple things and as the list grows, so does the inquiry.
I have successfully navigated the section of the river that put the last nail in my thyroid’s coffin and found a new medication called tyrocint that absorbs before the small bowel so that I am now sporting lab numbers that make sense. My body is very happy about that.
As I mentioned before, I had hoped to be floating along enjoying the scenery a bit more by this time but oddly, several symptoms have appeared and increased in intensity to the point that I’m parking my kayak on the side of the river for awhile. As the other two issues have stabilized, multiple neurological issues continue to be present and contribute to keeping me in bed or on the sofa about half the time. I do find my way out to the patio swing where I can lay down and listen to the fountain and multiple birds who drop by. Yesterday and today the sound of a pay loader going forward and backing up with its beep, beep, beep nonsense has interrupted my zen but soon the lawns will be in across the street and that nasty little machine will be long gone.
I will head to Mayo again in 3 weeks to see the GI doctor for swallowing and esophagus testing and then see the rheumatologist again to see if it’s time for an immunosuppressant medication and whether it is possible for me as I once took one and experienced liver toxicity after two months of it.
The most difficult aspect of this journey is the way this stuff is messing with my cognitive ability and muscle coordination. The nature of autoimmune diseases is that they flare up and die down. I went all out over the weekend energy wise and participated in life with Dean. We attended a graduation in Cambridge on Sunday and enjoyed seeing Hannah. Yesterday, I could hardly function. On a walk with the dogs I dropped the leash and as I chased after it, I had one of those kind of drop falls. The kind where you just hit the ground and when your there wonder how the hell that happened. Not only that, but when the neighbor started to talk to me, my words weren’t coming like normal and that was particularly frustrating. So, yesterday while still in my kayak, I hit some rocks and determined to beach it for awhile.
Today is better. My thoughts are organized enough to write this update and I haven’t been down once since I woke up. My goal is simply to be fully present. I’m also constantly singing the new GooGooDolls song I’m So Alive. It was so thoughtful of them to do that just for me….
One thought on “Getting Real…A Kayak Journey”
Thanks for sharing Jane.