I am finally posting is three days after writing what is below. My head space is better, even if my body isn’t meaningfully so. Medication changes are helping somewhat. Family is starting to arrive for thanksgiving, and I am feeling grateful, hopeful, and more resilient. This crazy ride is day to day.
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I have started this blog post a dozen times. I can’t seem to figure out what I want to say. I want to be honest, to describe this journey as it is. But who wants to read a story of struggle? I woke up this morning and started crying as I braced to sit up, cried as I made my way to the bathroom, cried during my shower, cried while I got dressed. Things are hard right now. Some days I don’t have the energy to look for silver linings, to look for things to be grateful for, to reach for hope.
This is nine months post treatment, nine months into the “recovery” process of undetermined length. I wish I knew how long the marathon was. I wish this story had a clear, narrative arc. I wish I could be witty and comedic about it all.
I am certain I am not alone in this feeling. For a million different reasons people are sitting in their rooms alone trying to make sense of something that feels untenable. People feeling depressed, lonely, in pain, and stuck in bodies that don’t work, whether through illness, injury, or age. It sucks and it hurts and it’s hard and there are times when looking for the bright side of things just doesn’t happen. Maybe it will tomorrow, but maybe it’s okay to just be here and let the hurt have space. It is something I fight so hard against but today I don’t have energy to fight. Today I barely had energy to shower, but I did. Today I barely had energy to do dishes, but I did. Today I barely had energy to make my bed, but I did.
I need to call my grandmother more often. She is 96 and alone in a body that keeps going even though she’s done. She lonely. She hurts. She does not know what to do with her time. I get it. My situation is different in important ways, but the result has a lot of similarities. I want my body back. I want a purpose. I still want to be building things, to look back on my life and have a story to tell that I’m proud of. I can only imagine she wants the same thing.
Spasticity/legs/walking:
I am now nine months in and if anything, this spasticity is getting worse not better. My right leg contracts so hard. It pulls through my quad, through the muscles on the outside of my right hip. It’s not just tightness, but spasming. I can be standing and my right leg seizes up into what looks like the crane pose from The Karate Kid. I’ve shown this before in videos, but it’s so hard to describe the intensity. This muscle contraction through the quad, knee, and down through my right foot have the effect of making my leg shorter. I cannot fully straighten my leg or put my heel down. My foot wants to walk on the toe and the delicate muscles and bones along the upper arch of my foot have a sharp pain and it feels like they might break.
I honestly don’t know where to step next. I can only do so much physical therapy, massage, prayer, wishful thinking. Medications aren’t touching it, no one seems to have answers. So, I’m a dark storm cloud these days. I’m not interesting or fun to myself let alone to others. And I’m losing energy to fake it.
I do still believe this is transient. But it will not be quick. I may not have relief, if it comes at all, until the 2-year mark.
Arm/hand:
I don’t know what to say here. I haven’t exactly given up, but I just don’t have reserves to focus here when my leg and walking are so hard.
Bladder:
status quo, a little bit of urgency issues, but something I could live with if it never got better.
Bowel:
again, status quo, not perfect but whose is?
Hair:
still watching with curiosity. Kira trimmed it about two months ago. I may eventually want to have it short (it is so very easy!), but I’m so curious to see what it looks like as it grows out that I’m sticking with it through the very awkward grow out phase.
Medications:
I met with my physiatrist yesterday to try and sort out a pathway forward with medication when there are no silver bullets. I have increased my baclofen to 20 mg, 4x/d. I am switching from gabapentin to Lyrica. I am planning to decrease Tramadol at bedtime and the switch to tizanidine for sleep.
My hematologist is having me try and iron infusion. The hope here is that increasing ferritin to a goal of 100 ng/mL (I’m currently at 63 ng/mL) may help with the spasticity. This is a known remedy for restless leg syndrome. My MS naturopath had also mentioned this as a possible intervention. Fingers crossed!