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 

My Cage (poetry)

Kandi Blaze - Image by Frazees Photo Stash 

“My Cage”

I often wonder what it is I am hiding from? Why I allow copious amounts of fear to consume me. With death I have become far too logical and comfortable for most to bare listening. I find conversations about our mortality to be rather delightful. The more I think about my demise, the fuller I feel to life and living it.

What am I running from? The tingles in the base of my skull turn to my pores excreting sweat, as my heart skips beats and pounds rapidly. I can feel each beat thumping in the pit of my stomach and in the sockets of my eyes. It’s eating me alive.

Everyday the feeling haunts me, it rears it’s rage. A feeling of failure keeps me locked up in my own cage.

©️ Kandi Blaze

Image and design by Frazees photo stash - Jason Frazee. I absolutely love working with Jason, and this set was exceptionally interesting and artistic. The set is an artfully done nude series of images to reflect the soul, the rawness, and maturity of life.  We did a few different styles that day and several of the images I felt compelled to write a short and expressive story or poem with.
Thank you for being a fan of my page and following my adventures in life. I hope you enjoy these images and some of my writings.
Xoxo,
Kandi

What An Honor It Would Be To See 40!

After a long day and cuddles with the grandson, I thought I would go through some photo albums on my computer and internet files. You see, my 40th birthday is coming up. Something I was told in my mid to late 20’s I’d never see.  There was a while that was true, and then we found the cause of my illness and were able to treat according.

Concerts! Left to Right: Kandi Blaze, Ivy Electric,
Chevy Cheyenne, and my beautiful daughter, Destiny. 

In my 30s I gained hope. My life was changing, my child was mostly grown, I wasn’t the same woman, but I remembered the girl I once was.  I wasn’t so sick all the time, actually I looked pretty healthy, despite the immune issues. I had nice curves, healthily cheeks, and was full of so much life. I was a hummingbird. Go, go, go! Couldn’t keep me down, because id been there. I had to live every minute. I needed to experience life. Soon I remarried and was incredibly blessed to be married to my hero that always tries to save me. I was now a grandma to the worlds cutest and orneriest boy, and for some reason he reminded me of my dad. 40 was going to happen! I was going to reach a mile marker that I once thought would never be achievable. Life was truly fantastic.

April 3rd, 2020, I am to be 40 years young. An age most dread, look at as old, or the downhill of it all.  A little less than 3 months away. I want nothing more than to be able to celebrate this day. This monumental moment in my life that I never expected to see, and I know isn’t a full guarantee. It’s never felt so incredible close and yet there are times we not sure it’s truly reachable. 40 has such grace, pause, and maturity if you’ve learned that life isn’t full of mistakes, but lessons learned and not worth repeating. 

1998: My father Ken Cooper (1942-2009), my Grandmother
Mabel Cooper (1911-2006) Kandi Cooper (that would be me),
and my daughter, Destiny. 

Tonight, as I went through those photos, originally planning to create a quick birthday video with pics and clips, I began seeing the healthier vessel I had been, seeing the people over the years I’ve connected with, loved ones, lost friendship, smiles and hugs from those no longer living in this realm with us. I couldn’t hold back the tears. I wanted to be happy for so many connections. So many beautiful faces and smiles I’ve shared with so many of you. I am humbled at many of the relations I’ve had. Sad and sometimes angry at the loss of friendships. I grieve for the dead, but there is comfort in reuniting our souls.

I also realized I’m the only one that knows where all these images are, what music is my favorite and expresses my personality and life. The tears fell incredibly hard when I watched Rob and I shove cupcakes in each other’s faces at our wedding. I laughed and reminisced at the video clip of us shop ladies being in a Dodge drift thrill ride. These were the clips and images I wanted to share with people I made memories with while I was alive! As hard as it will be, I plan on creating a beautiful memorial video of those clips,  images, and memories with so many incredible people over the years. And no one needs to scramble and sit for hours or days and decide what images I would have liked. Here’s that damned double edge sword again. This is hard, but with rare opportunities like this to express art, share memories, and leave one last footprint at my final goodbye, it just seems right for me.

Wow! To be 40. What an honor that will be to hopefully see.

Kandi
01/21/2020

Don’t stop believing in love

2020 is going to be an interesting one for us! Lots of good with the bad, but I need the good and events to weigh out the bad. I am beyond thankful to the places and people not giving up on me. You are my spark of light in the darkness and I won’t let you down, but please know not everyday is easy, just as not every day is super dark. It’s a rollercoaster some days, but when I have events to go to, people that drop in, or shoot you a message to ask how you are, that’s priceless. I feel the love and I thank you for it.

I’ve been called brave, strong, a faker, an attention seeker. I am none of these. I am simply human, living with and dealing with a chronic and terminal illness, but please don’t give up on me. I still hear hateful rumors. I can’t stop people from believing what they want. Perhaps it makes them feel better if it doesn’t exist. Perhaps they can justify their actions and words by telling themselves it’s all for attention. Oh, how I wish this was true. You have no idea how badly I wish this wasn’t happening. You have no idea how badly it hurts to ‘prove’ you’re sick to those that once called you friend or family, and even when you show them over and over, they roll their eyes and delete you out of their life.

And yet, people can be so incredibly kind and compassionate. We are capable of so much love as human beings. So much love to give. It’s truly limitless and in an abundance all around us. I’m trying my hardest to spread the love I still have, because I feel like I have a plethora of it to give. Love. It doesn’t cost a thing.

I’m going to post this image from my family doctors office today. This isn’t from my explosion of specialists, this isn’t my Encyclopedia of a medical file... This is just a brief and quick rundown/print off of a few things... life changing, altering things. Don’t be sad. Be proactive! Fight for the cures with me! Love those that are dying! You think it’s hard on you? It’s harder on them.

Also, those are my feet today. 😂 Biscuits exploding with edema becasue my heart is having some fits and battling with circulation. No, it’s not made up. Nope, not in my head. I’m standing up for myself. I’m not going to allow the nay sayers and haters to put me down further than I already am. No, I’m going to do what I always do and push like a mo-fo! I’m booking my calendar up for the season. Yes, I’ll be on stage and a guest at events, even if I’m dying and under 100 pounds, and you know what, that’s freaking amazing! Ahhhhmazing! Don’t stop believing in yourself.

Just because others want to see you fail, doesn’t mean you stop pushing and give up. You fight even harder, harder than you’ve ever fought in your life. You’re fighting for love. Don’t stop believing in love. ❤️

Kandi

Multiplex of Specialists

I was supposed to see yet another specialist in the afternoon that’s nearly an hour and a half from home, but they scheduled for the wrong doctor. This particular one is a special-special gastroenterologist, that my oncologist referred us to.  We’re told they are supposed to be doing or discussing some form of genetic testing to see if there’s a link between my diseased pancreas and cystic fibrosis, which runs on both sides of my family.

Specialists. I despise that word. I’ve seen more specialists in the past 6 months than most see in a lifetime. Seriously. I’ve dealt with a variety of specialists before since I have a variety of immune issues and spiraling health from it.

Let’s start with my Cardiologist, that’s my heart doctor.  I see him because I deal with Afib and tachycardia. My heart likes to go out of sync, have crazy out of rhythm patterns, take long pauses, and other silly stuff. This tends to cause a sudden change in blood pressure, and a blood pressure crash, resulting in lack of oxygen, headaches, dizziness, slurred speech, and sometimes passing out. The normal medicine, beta blockers, are a no-go for me with my already insanely low BP that 3 out of 4 cardiovascular specialists have said a big NO for me on any meds for the heart with my health history and immune system.

I visit my Pulmonologist most frequently, as of now. That’s my lung doctor. Surprise! All that trouble I was having breathing and excess phlegm was diagnosed as COPD and asthma. No, that’s not fun at all.   Years in a body shop, diesel exposures as a kid, and about 18 years of my life smoking. I’m paying for it dearly, but thanks to a routine powder inhalant, an emergency inhaler, and natural breathing remedies, it’s semi-manageable, except the hacking at night. That’s annoying.  I promise you though, breathing is not overrated.

Oncologists aren’t a lot of fun either. Those are your doctors that deal with cancer. Cancer? Yeah, I’ve had both cervical and ovarian cancers at age 19, followed by a massive surgery and total hysterectomy. I was 6 months pregnant and miscarried right before I found out. I currently see another oncologist for the pancreas. Yes, the pancreas. It’s a dick. Well, at least it looks like one. Mine is extra special, just like me! Years ago my gallbladder was removed because it was in apathy, full of stones, and covered in some form of sludge like fluids. The gallbladder leads to your pancreas. My pancreas started off having acute pancreatitis, then chronic pancreatic flair ups, and now it’s diseased, calcifying, and no longer allowing me to absorb proper nutrients, breakdown enzymes, etc.... in term, all my doses of vitamin D and potassium for my heart weren’t getting absorbed. Hmm... There’s a pattern here. Eventually, if I make it long enough, it will become cancerous and be my demise.

Gastroenterologist is most definitely on the list with all my diagnosed stomach issues... Not only did I have the cancers prior but 6 years of C-diff went undetected and undiagnosed, until it wasn’t and I was almost dead.  One of the longest cases that survived though! It’s not really bragging rights.  Turns out you shouldn’t be given test antibiotics when your daughter has chicken pox and you’ve never had them yourself.  Years of my life we’re lost to big pharmaceutical companies and 28 different prescriptions, most were prescribed double and triple doses since they had deemed me ‘terminal’.  Now we are back at an extreme specialists that focuses on the pancreas aspect of gastrointestinal disorders.

Rheumatologist for the auto immune. I get one super power and my body attacks itself for fun.   How? What kind? Well... that’s what we get to find out! Supposedly all these years I’ve been diagnosed with Rheumatoid Disease, an immune disease that affects so much more than just the joints. Last rheumatologist I saw was in Dublin, OH over a decade ago, and medicine has come a little further in this department, but unfortunately not nearly as much as those of us suffering would like to see. I have an appointment in less than a week with a new Rheumatologist.

Ugggghhh! That a lot of Igst’s.

Weighted in at 94 pounds the other day at the regular doctors office. Don’t forget about the family practician! We frequent that, emergency room visits, and tons of blood work.  There is talk of some form of home health care and assistance so I can at least stay hydrated. They have talked about a possible pic line so hydration would be easier and maybe we could try some form of vitamins through the line.

To be honest, more than anything right now I just want some comfort. I want to sleep without feeling like the bed is a thousand fists with knuckles pushing and puncturing my boney body. Every night I lie down it feels like the start of a horror movie with the pain, sweats, and lots of heavy and vivid dreaming when I do fall asleep. Even on a cloud my knees protrude out enough that against myself causes pain and strain, and my arms across my ribs feel like anvils ready to crash through.

I just want to feel human again and subside the multiplex of specialists. I’m surviving, because it’s the only choice I have. ❤️

Kandi
1/12/2020