How many clusters of headaches will it take for me to learn…? The answer may be 26 years worth of episodic clusters. I hope this time I have actually learned, but please remind me in the future if you see me once again thinking that “this time I can get the headaches to go away… this time they are mild…” No. The clusters always start mildly and I always try new ways of dealing with them in that mild state and those methods work, thus making me think I have some new secret. Nope. If I have figured out anything about changes to make in my lifestyle, breathing exercises, yawning, relaxing, crying, writing, yoga, etc those are only the means to hopefully avoid the start of a cluster in the first place. If a cluster starts, no matter how small the initial headaches are, I need to take immediate action to get nerve block injections and prednisone to stop the cluster. I need to stop thinking I can solve it any other way. As the clusters progress they always become so intense in the middle of the night that I cannot use any of my tricks or function in any way. So please remind me when I forget this again.
As you may have surmised, my cluster this time got really bad. I was on a round of prednisone which helped while I was waiting for a long time for an appointment for a nerve block injection. As soon as I started weaning off of the prednisone, the headaches became the worst of this cluster, meaning that Carl once again woke to hear me sobbing downstairs and nearly going out of my mind, and even all of his tricks of rubbing my back and neck didn’t work right away. Luckily, my headache doctor set me up with a second round of prednisone and was able to squeeze me in for a nerve block on Friday morning. What I cannot fathom is why it takes so long to get an appointment for a nerve block when the actual procedure literally takes 2 minutes. Two minutes! Minutes that will save me hours of agony. What the $%@)(#R%&???? That should be an appointment that can be scheduled immediately with any doctor on staff any day. Apparently though it has to be with my doctor or their assistant. Why?!! Anyway, I will try not to dwell further on my incredulity and frustration and just be grateful that I hope I have the reprieve I sought. Only time will tell as I wean off of the prednisone again. For the future I will not wait until things are excruciating. Although in my defense. I didn’t wait this time. I tried. I emailed and I called when things were mild and was told I had to wait (first because I had a cold and second because they were booked) and I only seemed to get in when I pushed harder about how bad the headaches were. I had even reached out before my hip surgery because I knew it might trigger a cluster. So I do think I did my best and next time I just need to push harder if I don’t get the answer I want. I never ever want to be in such pain again. So I need to push hard for remedies when the pain is mild, as if it is already the emergency it is certain to become.
Aside from all of that… my hip is progressing well. I have now put a sock on my right foot once without needing my special tool. I walked to the mailbox with my cane and I got groceries. I wore jeans for the first time since the surgery. I do much more in the house without a cane. I can kneel on the floor. I can get down onto the floor and get up again without worrying that I will be stuck! My PT sessions are going well and I even coached my PT on how to use his hands and body differently so his work on my adductors didn’t tickle me. He needed to soften his hands, make contact without pressure, and then rock from his ankles to apply the pressure. Then the work was easily much more effective. I was pleased that he was open to my suggestions.
For Sarah’s seasonal allergies we tried switching to Zyrtec for a few days starting about a week ago, but then we felt like her hearing was compromised. That doesn’t really make sense as a side effect unless it was something about how effectively it took care of her congestion. Anyway, we switched back to Claritin and noticed that her appetite seemed much curtailed, probably again due to phlegm, but now her hearing is back to her normal. So maybe it is all about where the different medications most effectively clear the mucus. I don’t know. I asked Sarah which she preferred and she said Claritin. Her appetite seems mostly normal again. Friday night I was concerned that she wasn’t eating enough and then she proceeded to eat 6 meatballs! So I guess she was feeling ok.
Amy had an intense week of school work, with lots of reading for her school book club plus needing to work on her creation of a board game for math class. She pushed harder than usual, needing to work in the morning before school and skipping watching any tv after school. She made it and was pleased with her creation. Now we are practicing mapping things out a bit more ahead of time to make sure things don’t get so intense in the future, if possible.
Last night Carl’s parents came to be with the kids so Carl and I went to dinner and a movie. As often happens when we go out, I marveled at how many other people were out on a Saturday night. We go out so rarely that I forget how many people go out on the weekends.
I am pondering how to schedule my life as I am able to add more things back to the mix. It feels similar to the questions people asked of themselves as the full covid-shutdown abated. What do I want my days and weeks to be like? As with previous evaluations, this feels hard. I want to do all of the things that I did before but I also want to have time to read and have a more relaxed pace to my days. These things are not necessarily compatible. So I’m still thinking. I am also reminding myself that I’m still slower with any given thing than I used to be, so as I continue to heal I may actually just have more time. My trip to the mailbox took twice as long as it used to and I’m guessing my grocery trip was also less efficient. Which is all ok. I just sometimes forget that I’m not up to full speed because I’m so much more capable than I was a month or two ago.
Sarah’s love of crocodiles continues in full force. Her main thing this week was to wear a nightgown that you might mistakenly think was covered with pandas. Actually they are crocodiles and all of them are doing or feeling different things. Some are sad, mad, happy, and confused. Others are playing sports. I also got her a crocodile ring, and Amy and I got her a book called Investigators at Amy’s school book fair. We figured alligators were close enough to crocodiles, and Sarah did read some of the book with Amy yesterday.
If life gives you pandas, may you be able to make whatever crocodiles you need from them.
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