I haven’t been on here much and can’t recall what I last wrote about and what details I shared.
In November I was diagnosed with chiari malformation and told I should have decompression surgery. I was originally scheduled for mid February, which was then moved back one week by the hospital. But in January and February I had four illnesses, lost 8lbs, coughed for 8 weeks, bruised or broke a rib, and was still sick come the 2nd date. So surgery had to be postponed and the next available date was mid April.
Now with corona virus on the loose all non essential/emergency medical procedures and appointments are on hold. I really understand this but it doesn’t make it any less frustrating and upsetting. This surgery has the potential to decrease my symptoms and halt progression by restoring proper fluid flow to my brain and relieving compression on my brain stem and cerebellum. Though I am scared and not looking forward to recovery, I was prepared and had hope.
My symptoms have increased since diagnosis, and I am sure stress, sugar, and illness haven’t helped. I have had trouble walking, more migraines and high pain days, and more issues with words (one of the reasons I have not written here even semi regularly). I have also had more instances of thrumming in my ear and downward nystagmus.
When I was diagnosed I was determined to increase my strength by doing small work outs multiple times a week and hopefully have a smoother recovery. One day I did about 10 minutes of exercise, washed dishes, took Wallace to Meijer to pick up our Christmas photos, and then went for a walk. By the time we got halfway into our walk, I was barely in control of my left leg. It was like my brain wasn’t getting the signal through. I was walking like I was in recovery from a stroke and it took my whole body and concentration to keep my gait going. It took four days to get back to decent movement.
For the month of January, more than half the days were high pain, a 7 or above for my head and neck. It was a miserable month! Oddly, some cold medicines I took for strep and then flu help with the pressure in my head. I still have constant pain in my back, hands, and feet, but I have gradually gotten used to functioning with that over the last 6 years. In July I had my tongue tie released and it greatly decreased the neck pain I was waking up with. So that’s been good.
When I have balance/walking issues I feel really pathetic and like I have to rely too much on Wallace’s help. A seven (oh my god!) year old should not have to take care of his parent. But he has been amazing and sweet and usually willing to help whether I need a hand to hold, a Kleenex, or a popsicle. I do make sure I still do a lot to help him with things and offer to read and play games when I can.
It’s also hard to feel competent when my brain is struggling to find words and make sentences. It’s been getting harder lately and I have to put more effort into typing and talking. This was the main symptom that made me decide to keep looking for a root cause. I knew something wasn’t right and it made me very uneasy. It used to be just a word now and then or an occasional pause. Now I frequently can’t find a word while talking and take many pauses to get my words lined up and out the door. I have begun giving people a heads up so they know I need a little patience when trying to communicate. I have also started missing words when I am typing or writing the wrong word (such as right instead of write). I am a total word nerd and it is really frustrating when I can’t say what I need to.
I am working on listening to How Not to Die on audio through the digital download program from my library. I am also back to trying to gain some strength and endurance (couldn’t think of that word earlier) while gaining back the weight I lost while sick. I had wanted to go back to pelvic floor physical therapy – coughing for so long made my bladder issues worse and the therapist I had has done a lot of work with people with neurological conditions – but therapy is on hold now. I would like to order myself some CBD oil again but I can’t budget it at the moment. After struggling a lot emotionally after diagnosis I was finally able to find a counselor, but have only managed to have three appointment.
But right now, I am sitting with a cat on my lap, tired, but content with the day.
I still have a fundraiser going on as I am in the perpetual state of waiting for surgery and recovery and was barely able to work before this crisis. If you are able to contribute a few dollars or more, I would really appreciate it. If you can’t right now, I understand. It’s tough for all of us and there is so much uncertainty. Please consider sharing my fundraiser link, especially on Facebook where Freefunder will count shares and contribute to my goal.