I confess....I estimated on the number of medical updates I've made. I've got all these thoughts for other blog posts, but I feel pretty low energy of late. I also feel like this blog helps me keep a bit of a journal of this medical saga that might help me someday and that might also help someone else feel a bit less alone if they recognize elements of their own fight. Even with the world's best support team, chronic pain is a lonely world.
Things have been pretty status quo. I can't say I'm "used" to the pain, but it just feels like it has been my reality for a long time and there's not much "new" in that world. I wear a brace for the most part when I'm out of bed which helps me feel a bit more stable but the pain is still rough. The brace is big and bulky and sometimes it feels embarrassing, especially after catching a glimpse of the back view in a 3-way mirror at a store. I do feel like it is useful to have at times, such as when I'm at the grocery store, as a bit of a warning to the world (though very few people seem to think to offer help to the poor girl with the obvious back issue). I changed the wording of that parenthetical a few times...truth it that the right phrase is "obvious disability"....or "obvious partial disability"...but that's a blow to the ego to write even if I know it is the current truth (and hope beyond hope that it is a "temporary" categorization).
My body definitely protests if I push too hard....I'll go from in pain to feeling very nauseous and a bit dizzy, not unlike a bad bout of motion sickness. Long periods in the car are a particular struggle since sitting puts a lot of pressure on the low back and it is harder in the car where your ability to readjust is more limited. It was also a fight to make it through a family wedding recently (but it was a lovely wedding and I'm glad I could be a part of it!). I'm pretty sure I looked like I had too much to drink, even though I had maybe three glasses of wine in a four hour span. My eyes look "off" in a picture from later in the night but I swear I needed a bed and hot shower more than anything else. It's odd how pain forms on one's face....sometimes I shake like a leaf and people think I'm cold and other times I look a bit "vacant" because I just can't focus beyond the physical struggle.
The light on the horizon -- I've got an appointment to see a new spine doc on 11/27. He's in Philly with Thomas Jefferson and came with recommendations from a few different sources. So, crossing my fingers that this doc holds out some hope and helps me see a plan. I'm expecting it to be another surgery and I'm honestly beyond fine with that -- even setting a date will feel like I've got some wheels in motion. Lately it too often feels like this is just where I'm at and where I'm going to be and that's not a good feeling. Send good thoughts at 2PM on the post-Turkey Tuesday (or maybe closer to 3 if the doc's the type to run late!).