A week ago, I received less than great news from my doctor. If you read my last post, or if you were unfortunate enough to talk to me last week...you heard the story..and you heard me crying with frustration and despair. Then we had weekend guests, so I just kind of saturated myself in their visit while letting my self loathing brew inside. I wrote a blog post last Friday called, "No Reserves Left". I just felt drained of any and all energy to fight my body any longer. I felt empty and void of any shred of inner strength. Not just because of what the doctor said--but because since last Wednesday, I've experienced severe dizziness everyday. Generally I wake up clear headed and my head gets pretty squirrely by mid-morning. Even when I'm still, it's like the inside of my head moves and mushes around, it's like an uncontrollable organism...kind of makes me think of the "Shmoo" cartoon character. Nothing seems to help --- even when I try to sleep the movement in my head continues to wobble around, leading to lots of lost sleep over the past few days.
I'm waiting on word from my job, as I know they will be making a decision about my employment soon. I'm certain I will be terminated due to my long absence. That is very upsetting, because-yes-I can get on Bob's insurance--but I will have to meet that company's deductibles ..when I've already met crazy deductibles this year. If I just had a job sitting at a desk, I could already be back at work. At least I have short term disability still coming in....and you can be assured, my next conversation with my neurosurgeon will include a speech from myself to Dr. K about giving patients realistic goals about returning to work.
Anyway..I've taken a few days of defeat,to let this sink in and to lick my wounds and now I'm ready to attack this thing again. I had 2 MRIs on Monday, I have reports (results are posted on my blog) from these, they are not clean, but not horrible. There are many words like "hemangioma", "perineural cysts", "seroma", and so on that I'm researching for more acurate understanding before forming an opinion about. I'm waiting on word from both doctors on how to proceed and waiting on my next MRIs to be scheduled.
I know I'm a rollercoaster of emotions with every post...imagine what my poor husband has to deal with..poor guy..we've been married a month now and we have run the gamut of emotions in that month. I appreciate you staying around for the ride. Thank you for continuing to pray for us and to show your support.
My daughter, age 20, is having an MRI of the brain this week to rule out Chiari. She has suffered with migraines and neurological issues since age 16.
My friend, Alisa Dye, is having her 5th chemo treatment this week for ALL. She told me last night she is hoping for a stem cell transplant at the end of the summer, which she hopes will extend her life by at least two years.
My Chiari sister, Tonya, is having her Chiari surgery with Dr. Kim on May 22 in Houston.
My Chiari sister, Melissa, is still recovering from her Chiari surgery, with multiple complications from her surgery and shunt placement.
My Chiari brother, Dave, still recovering from his PFD and having a rough time of it.