What is the extra bright green, alien looking light flashing throughout the night? Is it a ufo? Are we being abducted? Let's hide under the sheets!!! Wait…. Why is the flashing, green glow now uber bright under here?!?! Beep! Beeeeeep!
Ok, so maybe that's a bit of an exaggeration. It's more of a pain in the arse, but getting used to the beeping throughout the night if my heart is doing weird things. The wires get in the way of many, if not all things… Yes, that too. But that doesn't stop us!!!
Here is the reality, things are driving me crazy, but I try to have perspective. I met a gal a couple years back in Michigan during the Metro Cruise. Something was different about her and I noticed later she had a colostomy bag. After becoming Facebook acquaintances and friends, I became familiar with her battle with VEDs (Vascular Ehlers–Danlos syndrome, is an autosomal dominant disease that affects the arteries, bowels, uterus, and skin). She likely doesn't know it, but she's an inspiration to me. On my worst days, I think of her daily struggles, what it must be like to live with this horrific disease. I can't imagine what her body and mind must go through.
I think I can take my 30 days and deal. Not saying I won't have my small meltdowns and temporary loss of sanity from all these wires and devices. But before I know it the wires will be gone.
Monday, September 18, 2017
Tuesday, September 12, 2017
Day 6: Thankful for the Good, as the Bad is Ugly
I guess it's pretty simple. I have to be thankful for the good days that are so damn good you forget your body attacks itself. The good times and laughter that make me forget to keep up with a daily blog on this.
Who was I kidding anyway? A daily blog? Like I could seriously commit to that. Anytime I end up telling myself I will commit daily or weekly to something, I find myself dreading it. I want to do it/this on my own damn time and at my own damn pace.
Obviously my mood today is one for the books. Luckily there has been much good the last several days to help refocus away from my normal medical and immune battles, let alone these wires, and pads, and communicating devices that are taking a tole on my sanity.
Saturday was great! Spent it at the Rumble around my favorite things; hot rods. That night we ended up having a very spontaneous gathering and fire at the house with our highway Hellions family.
Sunday I pushed myself. Rob had signed up for the annual Stephen Siller Tunnel To Towers Run 5K!!!!! Firefighters in their turnout gear running, jogging, and walking for the cause. And this gal that was once in a wheel chair and currently wearing a heart monitor couldn't say no to walking beside my guy in his Firefighter turnout gear. All I could think was if these guys were doing this, then the best way to show my support was to get out there and do it too. I felt almost indestructible that morning during the 5K. Despite my bone and immune issues, let alone the heart crap. But I am not indestructible and I am most definitely not immortal.
Later Sunday afternoon it began. I couldn't even get a ten minute break from my heart going into exhausting PVC’s, blood pressure drops, fluttering, and all other sorts of wonderful feelings. Of course, my physical self was beyond pissed and all those hairline fractures in my back began to remind me of why I don't push as hard as I used to. Then the rheumatism began. I pretty much became a rag doll the remainder of the day.
Monday morning came along and I was running on about three hours of sleep. Not by choice, just how my body sometimes responds to my immune issues. None the less, I was up unusually early and had hoped to be at work at a decent time. A little behind after finagling with this heart monitor and wires. I noticed by my skin was starting to get sensitive. Extra sensitive is more like it. Likely from my immune system attacking it's self. I had hoped by Tuesday morning things would settle down a bit.
Tuesday morning, today arrives. I'm tied. I maybe got another three hours of sleep. My body decided it was going to sweat last night, and more fluids than I've likely taken in the past two days. I woke up dehydrated, wires stuck to my skin and damn near imbedded. I had to pull them off of me. Started to pull the ekg pads off and noticed it hurt like crazy. Got one off to discover about 15-20 micro sized blisters underneath the pad. I move them around every time I change. But I can't help wonder with all the sweating I did in my ‘sleep’ last night if that didn't play a role.
Today has been one of those days. If it could go wrong, it's going to. Health, both physical and mental is nearing its breaking point today. I'm sitting here at work forcing myself to type this all out so I don't literally start bawling at the amount of pain I am in with my body and in my head. Ive been on light duty too long and feel I'm not contributing where needed at work. I feel like my team members see me as a waste of space or just a bitch boss in the way. I want to jump in and work the metal, operate the welder, and put my weight into the build. And here is sit. Doing a little wax on a car, running the sweeper (when I can I can) or just doing some freehand pinstriping is about all I'm capable of at the moment. I don't know when it will change, or if it will even change.
I'm so pissed at the world right now. Not really, but that's how it feels. I feel my heart doing all these weird things, daily, sometimes constantly, and I'm pissed! I'm pissed we struggling detecting them. I'm pissed that this live feed hasn't called me and told me to get my ass in immediately. I'm pissed that almost every day of my fucking life since I was a kid has been a battle medically. Here I am, nearly 40 years old. A survivor of two cancers, a heart attack at 28, multiple baby losses, medical after medical battles, loss after loss.. and for what? To battle again and again? To have to go through procedure after procedure, test after test, diagnose after diagnose. I am tired. I am drained. I am struggling more than anyone knows. I try to put it into words sometime and I just stop because I feel like I'm a broken record on repeat. Eventually those around me while get tired of hearing it and like a broken record, I too will be disregarded. That's what happens when people feel helpless. Thy finally give up on the ones they once loved, because they don't know what to do or how to help.
Today. I hate life. Tomorrow will hopefully be better and I know better days happen and they come and they bring much needed smiles and laughter. But today. Today is my worst enemy. Today my darkness can't find the light. Today I am tired, and not in a physical manner. I am utterly exhausted with life, work, people, expectations of myself and others. I just want to close my eyes and the rest of everything that exists be a mute point.
Today, is one of those days that nothing helps. I feel rage, I feel hate, I feel hopeless, helpless, lost, and like the biggest burden to those around me. Life and people have a way of kicking you when your down sometimes. I've been kicked and beaten more than I can take today. It's just too much.
Friday, September 8, 2017
The Majestic Seagrave
Here she sits in my hot rod shop. Majestic! The 1928 Seagrave fire truck in front of the Kandi's Kustoms banner, with my Highway Hellions car club patch jacket hanging on the ladder.
This beautiful piece of antique automotive history also holds an incredible amount of sentimental value to many locals, including myself, but especially firefighters and their families. Once again, I am extremely honored to volunteer my time to clean and detail this phenomenal machine and ready her for the Rebel Rousers Rumble this weekend at the old Ashland Armory.
My love goes deep for the history of firefighters, especially with my dad, Ken Cooper (1942-2009) and my brother, Jeff Cooper, both whom served on the Polk Fire Dept many moons ago. And now, for nearly 2 years, I have lived with and been the companion and life partner to an incredible firefighter, Rob McCrea.
I'm humbled to have known these men and been a part of all their lives. They are my heroes! ❤️🔥🚒
Earlier this year I had the privilege of writing an article for the Ashland Times-Gazette on this 1928 Seagrave Firetruck from the Ashland Fire Local 1386.
Here is the link to my article in the TG if you'd like learn more about the Seagrave.
http://www.times-gazette.com/sports/20170207/ashlands-1928-seagrave-firetruck-wonderful-piece-of-history
Day 2 - The good, the bad, HOT RODS!
The day started off with several pain patches on my neck and back, while trying to work a bra through multiple wires. Ha! So much excess!!! Wires. Excess wires. They seem to flow everywhere and I try to keep them tucked in my pants… Again, I'm referring to the wires. I don't know what else to do with the excess wires dangling several inches below my shirt, and I can't get it caught on something at work, so that's what I do with them. And I try not to let the separate communication device fall in the toilet. It's firmly attached to my belt.
Moving on… Spent most the day cleaning the local antique fire truck for the upcoming car show this weekend. We went and picked up a 1947 Plymouth -Special Deluxe, because life is short and my motto is: hot rods!
Oh, I almost forgot! The bright green light that flashes every three seconds on the device with the wires is really bright when the room is pitch black. Later tonight I was thankful for the long wires as it was hidden underneath my pillow.
Wednesday, September 6, 2017
Day 1 - Let's Do This!!
Today is the day I get all hooked up for the next 30 days with a live feed EKG on my heart.
On one hand I am grateful for the answers, as I've had a heart attack at 28 (nearly a decade ago), and recently I've had some pretty bad bouts of what seem to be electrical issues that spiral into much more. My life has literally been altered the last few months because of complications. My cardiologist felt this was a life altering situation I'm in, and we need to get it figured out and under wraps as soon as possible. We've exhausted all other options and testing. So today, my next journey begins. It's going to be a pain to wear these wires and monitors. It's going to annoy the shit out of me and make me feel like I'm going crazy. But I know it's a medical necessity, and we need these answers to move forward with treatment or a procedure. Today, I am full of anxiety, a little scared of what we will eventually find, and honestly I'm just freaking out internally. But, like everyday, I've been trying to keep my cool.
I've decided to do a daily blog for the next 30 days to write about it so I don't lose my sanity. It's something. I also know my dark sense of humor and incorrigible behavior will undoubtedly take over. It's always my coping mechanism when shit gets deep.
So far I'm about 6 hours in and I'm managing to hook the two communicating/reporting devices up to my clothing without dropping them in the toilet when Mother Nature calls. I've pulled the wires by accident multiple times... I'm not looking forward to bedtime, for reasons I shall not mention here. Yet. Ha!
~ Kandi
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