{"id":714,"date":"2022-11-22T16:19:17","date_gmt":"2022-11-23T00:19:17","guid":{"rendered":"https:\/\/seedsproutblossom.com\/?p=714"},"modified":"2022-11-22T16:19:17","modified_gmt":"2022-11-23T00:19:17","slug":"post-hsct-month-9-symptoms","status":"publish","type":"post","link":"https:\/\/seedsproutblossom.com\/?p=714","title":{"rendered":"Post HSCT – Month 9 Symptoms"},"content":{"rendered":"
\"Happy
Happy Thanksgiving!<\/figcaption><\/figure>\n

I am finally posting is three days after writing what is below.\u00a0 My head space is better, even if my body isn\u2019t meaningfully so.\u00a0 Medication changes are helping somewhat.\u00a0 Family is starting to arrive for thanksgiving, and I am feeling grateful, hopeful, and more resilient.\u00a0 This crazy ride is day to day.<\/p>\n

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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.<\/p>\n

This is nine months post treatment, nine months into the “recovery” process of undetermined length. I wish I knew how long the marathon was. \u00a0I wish this story had a clear, narrative arc. I wish I could be witty and comedic about it all.<\/p>\n

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.<\/p>\n

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. \u00a0I get it.\u00a0 My situation is different in important ways, but the result has a lot of similarities. \u00a0I want my body back. \u00a0I 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. \u00a0I can only imagine she wants the same thing.<\/p>\n

\"recent
Me and my grandmother on a recent visit.<\/figcaption><\/figure>\n

Spasticity\/legs\/walking:<\/h4>\n

I am now nine months in and if anything, this spasticity is getting worse not better. My right leg contracts so hard.\u00a0 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\u2019ve 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.<\/p>\n

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.<\/p>\n

I do still believe this is transient.\u00a0 But it will not be quick.\u00a0 I may not have relief, if it comes at all, until the 2-year mark.<\/p>\n