Another episode on 1/28, stroke like symptoms. I was doing well all morning, crafts for Brian and Michelle’s wedding, housework, phone calls, practicing piano. I was signed up for an art event at the library that evening. I showered and was ready for my piano teacher to arrive. As I went to answer the door my legs got week, could not walk straight, lightheaded and knew something was going south. I asked her to sit with me. I struggled speaking and dialed me husband on speaker, I then started repeating certain words “help”, “mom” “no”. Consistent with the 2 past episodes. I could not answer medical personnel’s questions appropriately as I would repeat and slur words. Phil was already on his way to meet me at the hospital. EMS had me loaded up ready to go and they let my music teacher head home. Once at Del Webb it was quite a blur. They spoke with my neurosurgeon who was in Chandler Barrows for the next couple days and wanted me transferred there. So by ambulance there I went. I sat uncomfortable in a gurney in the hallway for 18 hours. All my meds were off routine. And I don’t just mean pain meds. (I am not a junky). I mean meds so I don’t get backed up). I take topomax which can cause seizures when missed. I was not in a good place or comfortable at all. My husband was sitting in a hard chair. There was much confusion with orders and imaging. I did get the important imaging done. After that I had to make a tough decision to leave against medical advice. My health was at risk there. I had a catheter in which affects my bladder. I was sitting in a Petri dish of germs, with a very low immune system, compromised my medication I take. I was not able to eat or drink, it had been 24 hours. And the gurney I came in on was not where I should have been placing more pressure on my spine. They did the Myelogram, that’s truly what I needed. I never saw a Neuro doc. I have an idea of what happened: I was just on a steroid dose pack for an allergic reaction to sulfa. So I felt like superwoman. Doing things I physically would NEVER do. Lifting, walking, etc. it then caused inflammation in the cauda equina and nerve roots In the thecal sac. This is from the adhesive arachnoiditis from the initial spinal cord injury in 2013. It causes more inflammation and impedes the cerebral spinal fluid flow to the brain causing stroke like symptoms. This is a sister diagnosis to MS in the sense of the swelling of the spine. I could not move my legs due to the pressure and swelling in the lumbar area. This is now the 3rd time it has happened. After rest and more IV steroids it does subside. I felt I would get more rest and proper care at home. I could not lay there anymore.
Lean on Me
I have very much appreciated everyone in my life. Words that constantly ring in my ears are "call if you need anything". Those are such precious words to me. The song Lean on Me plays over and over in my head some days. I often hear it and become tearful. Why? I will tell you why... When you become chronically ill, isolation just happens, you become more vulnerable for abuse, and depression, and you grieve. Leaning on friends during this time is so important. But, where are they? They go on with their lives, that's where they go. Most do not understand what it's like to be chronically ill. If you try to educate them, lets say post about it on facebook, then you often get called out for "trying to get attention". If you post about how you are feeling, you get called out for "complaining". It's a lost battle. People expect you to be able to do the same things you once could do. There are very few people who understand it is difficul
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