Tuesday, February 4, 2020

Surviving and Yet Another Medical Specialist

Surviving. That is usually my response when someone sees me out and about and asks how I’m doing. It’s the best answer I can give. I’m surviving the moment.

Yesterday I had a few good hours and was able to take my classic truck around a few blocks while I enjoyed the streaming beams of warm sunlight.

The day originally stated off with a scheduled MRI of my brain. I’d been rather nervous about this as I’ve been experiencing some questionable and concerning issues. My speech has been slurred a bit, I often stumble over what’s in my brain and trying to come out my mouth... I can picture it but can’t recall the words or how to form them.  My memory, including some cognitive skills were struggling way beyond that of a normal brain fog. To top it off, I recently began getting headaches on my left side, and seeing changes in light and my vision. I kept telling myself that it was just malnutrition.  There was enough concern the doctor felt an MRI scan of my brain with and without contrast should be ordered. We were told in 48 hours we could expect the results back.

Less than four hours later the results were in. Abnormal. What?! Can I please just have one thing come back and say that it’s ok? Nothing was found! She’s in the clear! Of course not. Abnormal. Ha! Story of my life.
There are multiple small foci of hyperintensity on T2 axial imaging. Image 14 of series 5, in the left subcortical white matter, which are nonspecific and could represent a small focus of demyelinating or post inflammatory reaction.” 
 The good news? I don’t have any massive tumors and I don’t have an aneurysm! The bad news? The scan didn’t come back in the clear. You always want a brain scan to come back clear of any abnormalities.  There are signs and concerns and they just happen to be on the left side. So what does this mean? It means I now have another specialist to add to our growling lists of doctors, specialists, and specialists for the specialists. We are in the process of getting the appointment set up with a neurologist in Mansfield. Finally! Something closer to home. That unto its self feels like a small victory.

Thankfully yesterday was a little fuller of life, as today I’m confined to the house, but mostly the bedroom. I made it to the bathroom once and ended up doubled over on the floor due to the excruciating pain the pancreas has me in today. I can’t even put it into words. Today i can’t even muster the energy to cry because my body is too physically exhausted from the continued state of it fighting itself.  Odd moans that I can’t control mumble, muster, and sometimes bellow out.

Days like today, pharmaceuticals are not the answer. You’re too miserable to deal with the spiraling side effects that overall worsen the experience. As terrible as the pain is, and it is inhuman, it reminds me I am still alive. I’m still here, clenching on to hope that with my rare case, some how, some way, a panel of specialists will figure a way at a better the quality of my life. My case is incredibly hard with my past and current medical battles. When you have specialists from all around that have gathered to discuss your particular case and medical history, and they are still baffled as to how you’re still alive, that speaks in volumes.

They are trying. We are trying, but pancreatic disease in all forms is still such an unknown, let alone with my oddities of medical battles and extensive history with the heart, lungs, autoimmune, past cancers, surgeries, and everything in between. I honesty don’t know why the hell I am still here. I hope there is a grander plan than this, for me, and those around me watching me die.

I’m incredibly tired of just surviving.  I miss the hummingbird I used to be. So full of energy, life, and never letting anything stand in my way. A constant go, go, go. I had battled before, and I have lost greatly. It taught me to embrace every moment life offered and to celebrate it with passion, enthusiasm, and love.

I would give almost anything to have that chance at living life again.

Kandi Blaze McCrea
02/04/2020



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