Feeding A Hungry Soul

The past few days my soul has been screaming. It’s hungry. Starving! Famished for creativity.  I love to create. It doesn’t matter weather it’s a homemade dish from scratch in the kitchen, old world artisan breads, crosshatch ink drawings, pinstriping and painting, or even the visualization and mind set to create videos for the hot rod shop, or thinking of different and complex paint schemes and car builds. I crave the need to create. My soul wasn’t going to allow me peace, until I listened and allowed the art to flow and release.

Tonight I listened. I grabbed a few snacks, cranked the music up, and grabbed my pens and some paper. I knew what was coming, so I grabbed some Kleenex too.

Often when I crosshatch my little Skullie drawings or create some macabre art with my pens, I include an original poem with them. It’s part of the process. When I’m drawing and releasing, my mind is finally focused on just this and the words that want to flow with it.

Normally my mind is in a constant state of multiple thoughts. A monologue of creativities with commentary voices of every scenario, everything I’m doing, and random babbling. At any given time my brain is in a thousand different locations, hosting hundreds of subconscious conversations and decisions or ideas that are fluttering about. Sometimes they even have fun little accents.

At times, I am able to shut it all completely out and focus on what’s right in front of me. That only happens for me when I’m making tantric love to my husband, and the entire world ceases to exist outside our bedroom walls.  Rarely, and usually when my mental health is hitting bottom, I’m able to lose myself entirely into a piece of part. I forget how badly my mind needs that release of the chaos. Just for a bit i get to see what’s right in front of me.

I feel the urge to create all the time, but I find myself feeling guilty if I choose to give it my attention.  I understand how an artist or writer can get lost or wrapped up in their work for days, weeks, or months. It’s easy to see how they forget to exist outside their creative bubble. You can dive deep into your art and creations to forget the ugliness of the world. Why would you want to come back from that? Perhaps that’s why I choose to stop and step away from the world when it’s my last mental resort. I can’t focus on anything else and the world I see around me is crumbling, so I must loose myself, create, and release.

Once I’ve managed to put a piece of my soul on paper or a canvas of sorts, I feel like I can breathe a little bit better. The world around me is still noisy and chaotic, but I can manage instead of drowning in it.

I think I need to dedicate a little more ‘me’ time. Time to myself that I can create, and where I don’t feel guilty stepping away from house or work duties. Rob and I had spoke about making the basement my zen area. An area where I could escape, do yoga, listen to music, paint, draw, and just escape the world if I needed to. I think I’m ready for that.

His Love

Not a single soul had ever understood her the way he did.

His gaze would dance across her face even in her darkest moments.

His caress the only comfort when her world was ending.

His arms the saving grace she needed to lose herself in.

He loved her, despite her many flaws.

He loved her, despite her being broken.

He loved her for who she was and always had been.

He only wished she would see herself as he saw her.

©️ Kandi Blaze 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

An Elaborate Dance with Death

“Today my Soul Remembered You”
Drawing by Kandi McCrea - color by Barbara Barnes

There’s the good days, and no matter how good they are, how happy you feel, how decent your body maneuvers that particular day, how many smiles overflow your face, the bad will come. You try desperately to prepare yourself for it. You know the excessive shaking, attacks of a-fib, the not being able to leave the bathroom or bedroom for hours on end with your stomach and pancreas, the continuous surges of inhuman pain the consume your very state of existence are coming. You can only hope you got your reserves up, because if not, this could be it.  It, the pain, the emotions, the everything, and it’s no longer just confined to a particular area.  Your terminal state of degrading health hits you like a head on collision agains a cement wall. You’re pretty sure a crash test dummy has experienced less pain.  Despite that, your brain tricks you into thinking they, the next round, can’t truly be as bad as the last time, let alone worse. You can’t possibly spiral out of control worse than the last time. Then it comes. Bam! Crash! Surprise! Here I am! The crippling moments and days of autoimmune pain, combined with your pancreatic disease, your heart crap, and now your in-home  breathing treatments from your COPD, just to list a few.

But wait!  Like any good salesman, there’s more! So much more. I want to go into details about all of it.  Every fucking millimeter of my body and what it’s doing. My brain wants to analyze it, even if we know the answers. I feel like I have to continuously vocalize every moment of what I’m going through and be descriptive about it, and I don’t know why. I don’t know if it’s a coping mechanism, or because I’ve been in relationships in past that undermined my health and pain. What I feel like it’s doing though is dragging everyone down with me. Who wants to hear you constantly complain about every movement, every breath, and why it hurts, and why you’re sad, depressed, and overwhelmed about it? They can already look at you, see you’re unhealthy, and know you’re dying. Every new, little, or preexisting ailment that comes I feel I must speak and be vocal with. I look at my spouse and though he’s full of compassion, I know he’s mad. He’s mad at the situation, mad that he can’t fix me. Mad at the accumulation of ongoing expenses that will still roll in long after I’m gone.  The dying wife he’s watching wither away into nothing has to be incredibly hard on him. I’m sure he misses the smiles, because I know I do.  Sometimes when I find myself going on and on complaining, I just look at him and wonder if thinking or hoping I’d just shut the fuck up already. It’s what I think to myself sometimes. I get tired of it, because I’m living with this every second of every day. I don’t get a break from not dying. I don’t get to take a day or moment off of knowing if this is my last day. But the pain.... that’s what I’m never truly free from. The emotional and physical pain are beyond anything I’ve ever experienced, and those that know me, know I have battled greatly and lost deeply. I assure you, I have experienced pain.  We’ve tried all outlets with pain, and some days, no matter how strong the pharmaceuticals and natural pain meds, it’s not enough to take away the physical, and then those damn demons start dancing around in your head.

Today I don’t know how to push through besides this. This right here. Expressing myself. Today, the writing is literally saving me because the demons have grown dark enough that I can’t see past the current physical and emotional barriers.  My brain can sometimes be my best friend with the creativity, continuous thoughts on creating, visualizing, dreaming, and all the things that come with being an artistic soul. Then, there are these days. Days that I hate me. I hate this disease, what it’s done to my life, my physical body, my health. There are days when I’m so sick I can’t physically function and then it happens. My brain is no longer my friend, it becomes my worst enemy on a self destructive path. I’m already an over analyzer and micromanager, so when the darkness consumes, my brain continues the patterns of extreme details, but unto everything that’s detrimental and unhealthy.  The feeling of being a burden sets in. The harsh realities of your future, or lack of, come crashing down. 

I usually and finally cave to the physical and mental exhaustion and the spiraling of emotions set in.  At this point in time I’m usually too weak to do much of anything besides be in the bed, alone, with my thoughts.The 92 pounds that I currently am struggles to get into a comfortable position in an old bed. I doubt there will be a new bed before I’m gone. It’s something I’d give almost anything for, but I’m watching the medical bills and current state. I really don’t want to die in the bed that my husband and his ex wife used to sleep in, but that’s where I spend much of my time. Yeah... things no one else thinks about, but when I’m in this state, that’s the level of details that my mind spirals around. 

I have so much planned for this year. I couldn’t give in and plan 2020 by staying in bed, dying, with no hope. Fuck me! I’m not going out like that! That’s why I push so hard, despite everyone’s orders. I don’t want to go out this way! As much as I want to push myself to the limits, and I do, I also find this completely opposite feeling when I’ve reached the level of today. In bed, afib and tachycardia going crazy with their spiraling effects, in-home medical breathing treatments and I still can’t breathe, the rheumatoid and osteoarthritis making it extremely difficult to move. I feel the skipped beats thumping in my throat and chest, the blood pressure crashing, head throbbing, and I’m tired. So incredibly tired of fighting and pushing today. 

The darkness is here and the full of life pin up rolls over in bed, knowing she can’t give up, not for herself, but for others that aren’t ready. Days like today, I am ready. I am beyond ready to be free of this.  Days like today I don’t feel strong, I don’t feel brave. I feel like a coward because when I roll over I pray to my ancestors for this to be my last breaths of life.  I pray they will end the suffering because I am not strong enough to keep pushing like everyone thinks I am. The sicker I get the more I understand why there are countries and medical professionals that believe in assisted suicides for terminal patients. Some say that would be weak. No. No, sir, that’s the bravest battle they overcame and they left this world with dignity. 

When you reach the level I have, your perspective often changes. Much of what I have felt throughout my life is coming full circle. Every day I am faced with new challenges. The biggest challenge is pushing yourself. Not giving up on yourself sounds so much easier than it really is. Sometimes I have multiple episodes in the same day of the ups and downs. I’ve got this! Even though I’m dying, I’ve got this and I’m going to die with grace and beauty. Today, I don’t have this. I don’t even have a spec of it. Yet some how, some way, I will manage to pull myself together enough to make it through until that is no longer an option. I can’t give up. I can’t give in, and I have to keep planning as though my life will be long and full. That’s not easy, but I have to do it for me. If I cancel the events, cancel the racing, cancel the emcee work, then I’ve already given up on myself.  That’s why I push, even when I can’t see past the next five minutes.

Today I write to make it through. I don’t write this for you, I don’t write for likes and reviews. I write for me, so I may pass the time in hopes that this release will eat some of the darkness away. 

If you are following my blog and health, thank you. I know it’s not easy to read, it’s very raw. I can not sugarcoat death. Death is not prejudice. Within the same moment I have watched my newborn son take his vey first breath of life and within minutes or less, he took his last. There is no such thing as being spared because you’re young or lead a life of purity. When it’s you’re time, Death comes for you. Some how, I have walked the line with Death before and now we dance. It’s becoming quite the ballroom for our elaborate dance. 

Xoxo,

Kandi