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Air Fryer, Netflix, Prime Video, and TikTok Ads

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The daily grind of having chronic illness.

One day, my caretaker brought home an air fryer and changed our world forever. In the middle of my illness, I had all but quit cooking, and left it up for everyone to pretty much fend for themselves or my husband to cook when they got home. This neat little invention gave my family a new lease on life, as I resigned to my illness sitting on the couch either scrolling aimlessly through Tik Tok, or watching movies on Prime Video or Netflix.

In our home, we didn’t fry food often, if ever. Long ago, I had figured out that fried foods didn’t agree with me all that well, and for obvious reasons, I sure didn’t want to clog the arteries of my loved ones. Insert the air fryer, and our world was changed. We have upgraded to two different air fryers since the original one mind you. We literally have to have one to feed at least a family of four at any given time. We opted for a pretty awesome one, that we refer to as a “hobby oven” because it will do pizzas and various other things, rather than just air fry, it’s also a rotisserie as well.

CORSORI Air Fryer and Toaster Oven!

Anyway, I laid around a lot on that couch with hardly any energy to move, let alone enough energy to function my brain to even think about cooking. Everyone in the house was near adult age, or already adult in age, so it just made sense to make things a little easier than firing up the 6 cubic square foot oven all the time for some simple small meals or snacks.

I was actually pretty lucky to watch the transition of programming on our popular Netflix and its demise in my husband and I’s opinion. The offerings started to get smaller and less interesting to watch. So, when this latest billing fiasco came to light, it didn’t hurt my feelings much to just cancel it. For our family, it just wasn’t worth all the hype, when we can find programming for less, and after all, we already have a prime membership, why not entertain and use our Prime Video just a little bit more?

My soul purpose was to lay on that couch, and hope for the energy to get off that couch. I would crochet until my hands hurt, nap until I felt like I couldn’t nap anymore, and wait for someone to bring me food from the awesome air fryer. That was my life for several months. It wasn’t the best, but it was all I could hope for. If I woke up “above the dirt”, I was one step closer to not losing everything just yet. I am so very grateful for that.

I found myself writing notes and hoarding note pads in various places as well, so as I continue to write the book, you’re going to witness all the things I had to go through, by my notes. My caretakers and family fill me in with the rest of the information because, for a solid two years, I can honestly say, my brain did not have any ability to retain information. Swear on whatever is Holy that I have lost those years, and I may never get anyone’s birthday or ages correct ever again.

My Iced Coffee isn’t the same as yours…

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One Cup at a Time. My love for Coffee.

I didn’t like coffee at all until I was in my mid 20s and I had a friend bring me a “crappuccino” (my favorite term for cappuccino from a gas station machine). I ran around feeling super zoned and focused until the crash, and then I experienced the craving again. I fell in love.

Tie Dye Tumbler!

Actually, I had an affinity for coffee dating back to my childhood. The smell of fried bacon, eggs, and coffee radiating from the kitchen of my grandfather’s house in Kentucky. Vividly, I can remember those smells. I don’t know why but the SMELL of coffee would wake me up in the morning, it was the indicator that my parents were awake. Then, when I was old enough to figure out how to make the coffee, if I was up before them, I’d make it but never consumed it, that stuff was disgusting. Until that fateful “crappuccino” and then I was doomed, what was this life-changing deliciousness?

Little did I know that I had been slowly poisoning myself, and when I was in my most toxic flare of Mast Cell, it became very apparent that I couldn’t drink it anymore. I was ADDICTED… everything in my life revolved around whether or not I had my coffee. No one could speak to me until I had my first cup, and when I say first cup, I had a 42 oz tumbler, full of iced coffee. I would drink three of them a day! My iced coffee is not the same as yours, I promise you that. I had become a full-blown barista in my home. I had a coffee press, an espresso pot that you use on the stove, a Keurig, and eventually I learned how to COLD BREW straight up espresso. You name it, I could make it, and would if my heart desired it that day.

Handy Cold Brew Pitcher!

If the coffee in my cup couldn’t “grow hair on your chest”, it went back down the drain. I was at the point, that some of the BIGGEST chain coffee places were “okay” but still too weak for my blood. If my blood didn’t look like coffee, smell like coffee, something was really wrong. Until they actually pulled a vile of blood out one day that literally looked like left over coffee ground goo….I swore to them, “I swear I do not have a coffee IV at home, although I wish.” (They never did figure out exactly why I had alien blood that day, but it made me take a step back and look at my diet.) My addiction was actually adding to my demise.

Remember mold and yeast had infiltrated my body. Little did I know that in the U.S. they ALLOW a certain level of mold and such to infiltrate our food. It’s on the FDA website, there’s actually a scale they measure it by. For each cup of coffee I was drinking I was actually ingesting even more mold. I needed the caffeine to operate, without the benefits of the caffeine, my body just was blah, I had to eventually resort to the Green Coffee Bean Extract, because I couldn’t have the other stuff. Follow this link, if you need to have a little pick me up, with polyphenol benefits every morning without the crash! They sit out and the sun to mold before they are roasted, this is not conducive to someone now allergic to ALL THE MOLD.

I resorted to buying imported European Coffee from Amazon, to start weaning myself off of coffee, and then I went on the hunt for whatever beverage I could drink that I wasn’t allergic to or had a reaction to. Apparently in Europe, they don’t ALLOW contaminates or mold in their food, Go figure! Water even gives me heartburn. Literally learned how to Cold Brew the Coffee in my own fridge for 24 hours so that it didn’t heat up the coffee and pull the oils out of the bean. It’s the only way I can drink it from a drive thru place. The oils in the coffee bean are the most reactive and hold the most mold content, so if it’s brewed with hot water, I can’t have it. Talk about shell shock to my system. My kids would regularly warn people, including my caretaker, “Take away her coffee, and someone is going to die.” *I giggle at this because really it’s not true, but I’d get pretty darn defensive and grumpy. No one actually died, I promise.*

I guess what really got me was the cups I was using was also an issue I had discovered early on my coffee venture, to make sure I wasn’t poisoning myself indirectly. I figured out that the rubber grommets around the top of the cup, for no spill cups, they grow mold. And you BEST HAVE A SCRUB BRUSH FOR REUSABLE STRAWS, or just use disposable ones, because honey, those will grow mold too, even if you dishwasher them. Trust me.

Synbiotic Gut Health

Knocking this addiction wasn’t easy, and I ended up replacing it with something that is literally not even worthy of mentioning, it isn’t soda, but it’s an energy drink juice. I’m almost certain that it’s probably not the smartest idea at the moment, but it’s the only thing my body doesn’t have a reaction to, including my bladder. Not everyone is the same. I drink coffee occasionally now, in fact the last time I had decided to enjoy a cup of coffee in a drive thru I regretted it for two days, and I’m sure I probably will never do that again for months.

Wearing a mask help save me, but not from Covid…

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By unpopular demand….let’s discuss the facemask!!! MCAS and how it can help.

Before my death-defying Emergency Room visit, my regular practitioner and I had noticed a correlation somehow between mask wearing and my health. We hadn’t put all the of the angles together, but we had noticed a difference. It just so happens that my cousin, caretaker, had convinced me he needed a ride or die partner while I was losing my mind. We would regularly visit a neighboring state about an hour or so away, and he would door dash, and got a little four-hour retail job to help a friend at her store. So, he convinced me to come along. DURING A PANDEMIC.

After all, at this point, my capacity for critical thinking wasn’t there, so I was like, “What the hell, not like I’m doing anything anyway, I’ll sit in a truck.” Four hours sitting in a vehicle isn’t really fun even for a crazy lady. I would have rather held that banana in my mouth for four hours all over again, well not really, but I found myself wandering into the store and organizing product on shelves. That started the beginning of me getting better, and then the masks were introduced.

Eventually it became clear that the more time I spent out of my own house, and wearing a mask, my health improved! Little did many know that the World Health Organization and Europe had already figured out that Mast Cell Activation patients who were already in a flare up, were sort of “immune” to the first strain in the pandemic. We were already in a cytokine storm of sorts, so it couldn’t give us another one. How cool is that!?

Why are the masks so important? It not only blocked the germs of others, but it was blocking breathing in the allergens and some neurotoxins in the environment. I highly encourage all Mast Cell Activation people to put that mask on your face and wear it with pride. I know, I know, you literally HATED those things during the pandemic, but I’m telling you, didn’t you FEEL better? I still took mine off at home and had little reactions and I slept constantly after my excursions to the store, but I was improving, and impressed, along with my doctor!

When the freight manager came back to the store after her leave, she immediately asked, “Why isn’t this woman on the payroll?” I found myself working a job again after three years of not being able to by accident! Turning in the application blew them all away, because corporate said, “You are way over-qualified for this position, you should be a manager.” I responded only with this, “Not at this time.” When I felt it was time, I transferred back to my own state and took on a management position, but I was not ready then, my brain still wasn’t functioning the way it was supposed to but I could focus on OCD/ADHD type tasks of organizing and stocking shelves, and I was good with that. Anything to keep me moving.

This is me Christmas of 2021, I was in the process of healing.

***Disclaimer: Remember, I’m not a doctor, I’m just a patient who was fed up and advocating for myself. I share this information solely because I was encouraged to. From my research and experience, I discovered Mast Cell patients aren’t really immune… or at least not me. I wasn’t in a flare up, when I got the second one, I knew how to cope with the cytokine storm, so it was short lived for me. I was blessed with knowledge before it ever became a big issue. Some others weren’t so lucky around me, and when I begged and pleaded with them to do things for themselves to mitigate the cytokine storm, they didn’t, the results were life damaging and changing for them.

Happy Holidays and All The Best

Today I need to take a few minutes and give my readers an update on life. Life has been a struggle for others recently, I have taken time out from writing, authoring, and blogging to actually assist family in their time of need. I actually had to return to my previous position before I became unwell 6…

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Mental & Emotional Journey of Fibromyalgia

Fibromyalgia from a patient’s perspective is probably one of the hardest syndromes to navigate. Not only for patients but also for doctors. What was once thought to be a dysfunction of the peripheral muscoskeletal system has now become an obvious disorder of the entire muscoskeletal and peripheral nervous system. This leads to chronic widespread pain,…

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Why do we not know about this? Black Seed Oil

A few days ago, I ended up with this lovely sinus migraine. Now remember, my journey is slightly different than most. Mast Cell Activation can make all kinds of things swell and inflame when they are agitated. My ears were feeling clogged, my drainage tubes in my neck hurt, my whole head hurt. Not acetaminophen…

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Supercharged Erections

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You clicked on this article, so join me in laughing. I’m cracking up at the advertising for Butea Superba…

The fact that advertising for something as awesome as this herb makes me just laugh. To convince people that something is good enough, we have to promise a huge erection. Instead of the fact that it ameliorates (improves) cognition… wrap your mind around that one. It blows me away that erections are more important to our society than our main ECUs (our brains), but then again, you probably didn’t live the demented life like I have.

My focus has solely been the fact that I’m losing family and friends to cognition issues left and right it seems. That there is an epidemic of people that are literally going to leave this earth with Alzheimer’s and Dementia in the near future, but no one is talking about that. After my experience, I’m set out to tell others what I have experienced, and what I have found that helps me. I am an anomaly to science, and even my neurologist says so.

I visited my neurologist post pandemic and hadn’t seen him since 2019. He literally questioned if I was the same patient he had seen before, so I had to SHOW him the photos on my phone, my ID and proof that it was still the same patient he had been treating. He couldn’t believe his eyes, and then encouraged me to “Write that book!” So here I am. Blogging, Researching, and Writing.

Butea Superba available on Amazon!

“These results indicate that BS (Butea Superba) ameliorates not only cognition dysfunction via normalizing synaptic plasticity-related signaling and facilitating central cholinergic systems but also depression-like behavior via a mechanism differing from that implicated in BS amelioration of cognitive function in OBX animals.”

Mizuki D, Qi Z, Tanaka K, Fujiwara H, Ishikawa T, Higuchi Y, Matsumoto K. Butea superba-induced amelioration of cognitive and emotional deficits in olfactory bulbectomized mice and putative mechanisms underlying its actions. J Pharmacol Sci. 2014;124(4):457-67. doi: 10.1254/jphs.13252fp. Epub 2014 Mar 19. PMID: 24646653.

I’m not a doctor, and I will never claim to be, but after taking it for a day, I feel laser focused. I’m the guinea pig, I’ll continue to do it too. Therefore, you know if something helps you or not. My mission is to heal my brain so that I can get my body back.

The Importance of Magnesium in Fibromyalgia

We hear it all the time, another supplement that we should take. Something else to swallow, but why? My personal opinion as a Fibromyalgia patient is that I’ll swallow 30 supplements over 30 prescriptions any day. The human body is designed to heal, if we feed it naturally. How did we last this long in…

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Learning about Folate and Cobalamin

It’s been several months now, and I’m going to start sharing with you the really awesome part of my life. I’ve not needed prescriptions, and I’m tackling Mast Cell Activation, Fibromyalgia, Interstitial Cystitis, and all the other junk that goes along with these nasty things Naturally. Recently, my friend and I were discussing the importance…

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Unveiling Mast Cell & Fibromyalgia Connection

Fibromyalgia comes with many comorbid conditions that can be directly affected by mast cell reactions. Some conditions can include bladder pain syndrome/interstitial cystitis (BPS/IC), gastrointestinal symptoms (GI), neurologic inflammation and pain, and mast cell dysfunction and disorders. Mast cells in the skin are the guardians that quickly react to stimuli that disturb a person’s homeostasis.…

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I’m the guinea pig…

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My venture into being my own lab rat…

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Butea Superba is an herbal supplement that I recently discovered. Let me tell you if you click the link above, you can purchase and partake in the said herb. Throughout my venture of getting better I’ve came across various supplements that have helped me in my journey, some that I continue to take, and some that only helped for a little while, but not for the long term.

I’ve been a on a specific hunt to heal my brain, and improve my cognitive function, knowing that eventually I may actually have to relent to dementia or Alzheimer’s at an early age. I still leave that in the back of my mind. The MRIs don’t lie. I have a lot of black space in there, from the various abuses I sustained over my lifetime in my early years before I turned 28, that basically results in damage. Science has proven, that abuse in many forms is just as damaging to the brain just as much as the many concussions that I have suffered in my lifetime. I can at least count 5 maybe 6 total that I did suffer, that I remember.

My husband is also 18 years my senior. Don’t worry we were well beyond the ages of we didn’t give a shit when we fell in love, and age wasn’t a consideration, and still isn’t today. When it comes to my venture into the world of supplements, he’s been ALL in for choosing this over the millions of doctor appointments and tests that had not been getting me anywhere.

I became essentially my own guinea pig, and I’ve been following a regimen for over a year now, and when I stopped the regimen, I suffered memory loss, cognitive dysfunction, headaches and the like, I recently returned to my regimen before I was confident in finishing the book I was writing and beginning the blog you are now participating in reading.

I very well may be on this supplement train forever, but not without all the research that led me to the supplements I’m on. Remember, I’m allergic to just about everything. I have to carefully find things, that are peanut, shellfish, yeast free and gluten free for the most part. I also have to avoid medications and supplements with ACIDS (lets not forget my bladder disease).

Today, my husband and I have ventured onto the train of Butea Superba, because PubMed has literally published articles, verifying that this tubular root, has the potential to literally be a turning point in Alzheimer’s Disease treatment and prevention. So, sign us up, no questions asked. The various other articles tell you about how it helps erectile dysfunction as well as it being nontoxic to the various patients that were tested, and so on.

With our hereditary backgrounds, we know that it very well be in the cards for us, so cognitive decline is what we are preventing. So, we have chosen this supplement specifically. I’ve done the studying, and I’m not a doctor, but it never hurts to try.

Yes, that black space is not supposed to be there, that’s supposed to be full of white matter.

This shit is really bananas…

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The banana story…

To know me, is to know the banana story. I am a survivor of a lot of things, child abuse (not at the hands of my immediate family at home), I am also a survivor of domestic abuse as an adult, on more than one occasion. Emotional, physical, you name it, and I’m also a survivor of bananas.

I never wanted to disappoint my family as a child, it was of the utmost importance at this tender age of like 4 or 5 that I never disappoint. One morning having breakfast with my dad, he’s cutting up a ripe golden banana to go on his cereal and decides that he is going to share the other half of his banana with me. After all, we had figured out for some mythical reason, I had NEVER had a physical banana until this age, I have had baby food, banana candy, banana flavored pudding, but not an actual banana.

So, I start chewing up the banana. He asked me if I liked it, and I nodded my head, he told me to, “Hurry up and finish.” so we could retire to the garage, so I could color and he could work on his racecar. I crammed the rest of the banana in my mouth, grabbed my crayons and coloring book and headed out the door. Again, like I said, to know me, you have to know the banana story, because it was the QUIETEST, I have ever been in my entire life, until I started being swallowed up by my demented bliss in my 40s.

Vividly I remember, that day I had chosen to color a lion’s mane in my coloring book rainbow in color. Bible study we had learned about the coat of many colors. I especially loved Dolly Parton when she sung her song about said coat. So the rainbow mane was born that day. I’ve always been a fan of rainbows and Rainbow Brite and Strawberry Shortcake, that will explain my hair colors that change with my every whim. I wanted to have all the colors, all the time.

I sat there, with that banana in my mouth, gagging, my mouth filling with spit. I tried to swallow several times, only to find the gagging made my eyes water, and then I couldn’t color. I don’t know how I felt a comfortable point, but for FOUR ENTIRE HOURS, I held that banana in my mouth, as my dad hastened on with his work. Until it hit him, he came over to check on me, “Misty, are you okay?” I nod my head, “Are you sure? You haven’t said a word for hours.” Again I nodded, then gagged. “Open your mouth. What is in your mouth.” To which my eyes welled up with tears as I start gagging as I stick out my tongue full of mashed bananas. “Spit it out for pete’s sake child!”

You will never learn patience, or the importance of communication, unless you have held a banana in your mouth for four hours. Trust me, at a very tender age, I learned it was even more important to be able to communicate your needs and the needs of others that day, and a great deal of patience on being rescued in a most dire situation.

As you can see, because of bananas, I had the patience to stick to my guns with my illness, and continue to fight every step of the way, even in darkest moments of me not being able to communicate very well. Even though I’m not really allergic to bananas (it’s just a texture violation), I will whole heartedly tell you I am. I even tried to eat bananas while pregnant, ripe, green, it didn’t matter… it’s instant nausea to me. However, I can make a badass banana cake, banana muffins, banana bread….just not consume a raw banana.

Learning to Survive

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The hardest part of living with chronic illnesses is learning to survive it.

These photos are about a month apart in 2019. On the right you can actually see I still had purple in my hair, but as you can also see, there’s significant swelling in my face. Not to mention my eyelids, chronic inflammation is no joke, but it occurs.

Dark circles are a thing that I now live with as well, and “Painting on my Personality” is the phrase I use now, because most of my eyebrows fell out (or turned white), even my eyelashes would follow suit a few times. Lucky for me though, I had a few beard hairs show up as well, three more in fact. Insert my dad into pointing out that I had a beard hair under my chin that I never knew I had at 16, while we are hanging out with my boyfriend out of town at an electronics store. If you want to really torture your teen, do that, thanks Dad. Ha Ha! So, for everyone’s enjoyment in understanding my facial expressions, I do have to reapply my eyebrows when venturing out into public.

Learning to survive was hard though, not the superficial stuff. It was the depression. The never-ending list of growing symptoms. I even had to reach out to a friend for inspiration in how I just didn’t throw in the towel entirely. Their advice, “Find a hobby, keep yourself busy, and find God.” This time, I WANTED TO LISTEN, BECAUSE I WANTED TO LIVE.

I picked up a crochet hook and FORCED myself to crochet and learn to. If I couldn’t speak, and my hands couldn’t make cake, I kept telling myself I would FORCE my tremoring hands to do physical therapy of rebuilding dexterity by crocheting for something to do. I obsessively crochet and still do when it strikes my fancy. Simply teaching myself a pattern and do it long enough so that my hands gained muscle memory was just what I needed.

Then I began to change my outlook and approach as I accomplished just one simple project at a time. As I obsessively crocheted, I told myself, “If you can do this, it’s time that we approach your meds and life differently.” I began to change my mindset, just by simply crocheting a few scarves.

By 2019 my list of diagnosis went like this: Early Onset Dementia, Interstitial Cystitis of the Bladder, PCOS, Endometriosis, Fibroids (Although, I did have to dispose of all those unnecessary female parts in 2018 because my Uterus had grown 7 times the size that caused the permanent damage to my bladder), Chronic Inflammatory Response, Edema, High Blood Pressure, Fatty Liver, High Cholesterol, Fibromyalgia, Paresthesia of my Veins and Carotid Arteries, Tremors, Seizures, Osteoarthritis **There may be a few more that I had forgotten.**

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Green Coffee Extract provides a great source of polyphenols for your brain!! Energy!

Allergic to Motherhood

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…really just allergic to stress, but it’s literally the equivalent, right?

Motherhood has been probably one of my favorite jobs in life. As a little girl, I would dream of having tons of kids. I was privileged with one child, helped raise many others, and was blessed to remarry a man who had adopted a child. I loved motherhood, but the stress that came along with it, stress doesn’t love me, stress doesn’t play well with others. I was actually allergic to stress.

Stress would bring on more and more symptoms, it didn’t dawn on me at the time, that the more stress that piled on, the more my CNS (central nervous system) continued to take a nosedive, all the while, the hidden mold was still growing too. We hadn’t even found that yet.

There were days when Motherhood and stress got the better of me. My kids never got the better of me when I was sick, I think that hurt me the most, it downright depressed me. For about a year, I was lucky if I could even get off the couch at this point. Cooking became a thing of the past for me, and my husband would come home from a full day of work and cook, because I couldn’t move. Luckily enough our oldest graduated before my illness peaked and had already been moved from home, but the youngest was still home to experience ALL of this.

“Boyo” was probably one of the most trying children on my patience at times. Let’s face it, most days he caused a great deal of stress. The days I had to drive him to school, pick him up from school because he couldn’t seem to stay out of trouble during these times. Partially because he was used to the attention as the baby of the family, and at this point, the less attention he got, the more he acted out, classic for a parent who is terminally ill and a family trying to adjust to the loss, while they are still living, it was expected.

This wasn’t just a bad case of the flu; I had periods of losing the ability to speak (temporary aphasia? I really can’t explain it, I couldn’t even remember the words to say!). I had a day where I am just sitting on the couch with hubby, and my hand flipped a fork or spoon (I can’t remember the device) full of food at the “Boyo” across the room to the second couch on my right. (Youngest one in the home was gifted this nickname from the oldest one, it stuck.) He was stunned, I was stunned, my husband loses his shit and laughter abounded the rest of the night, as we were all clueless at why my “ghost hand” decided to just dole out a perfectly wonderful bite of food at our kid. “Ghost hand” heaved the utensil and all, while I sat delicately still holding my bowl. The looks on boyo and my face sent my husband into fits of laughter. If “oh shit”, “what the hell”, and confusion had a baby, I would imagine that was our faces in that moment.

However, for the stress he created, he also brought a HUGE amount of comedy to the table. Boyo took it upon himself to video me, tremoring while driving down the road, but he found a bit of comedy in the fact that during this particular drive I was tremoring to the music. This video in particular I have Parkinson like tremors that day, my head is bouncing, not on purpose.

Boyo was an adopted child, (my husband and his ex-had adopted, then divorced) and I was stepmom so we had him solidly in therapy weekly for many different reasons, so it could help him to work through some stuff. The coolest part of me even mentioning that, was when he was done with the therapist, I took his appointments over. THE BIGGEST BLESSING to keeping my stress levels down as much as possible, and horde every ounce of sanity I had left. This therapist watched me decline rapidly and help me and my family cope in however we needed. If I needed to bring a family member in with me to help me communicate my needs or thoughts with them, this woman was there through it all. She’s also been there through my healing, and boy, is she going to be so damn excited to see, that the blog has been started, and the book is coming!

**MY SUGGESTION: If you are chronically ill, or have systemic illness, or terminal, you get into that therapist as soon as possible, you seek every avenue to get to one now. No excuses or exceptions, if you are shelling out money hand over fist in co pays, or you have bills piling up, it doesn’t matter. FIRST AND FOREMOST, MENTAL HEALTH MATTERS!!!! If you give up your body to science fine but keep your head about you!

I’ve been encouraged by ALL of my physicians to write the book. There is a NEED to write this book. There is a NEED for this blog, because it seems that even pre-pandemic, when people would get sick, they would just submit to the will of popping a pill and relent their will to survive and thrive and just be sick forever. We need more survivors out there, after all; we survived the PANDEMIC, let’s get on with living!

Marrying your spouse off before you die…

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Memory Loss had impacted me the most.

I know that unless you have lost a loved one to Dementia or Alzheimer’s you may not connect with, or even consider memory loss as a problem. This was a mainstay of my systemic illnesses. It was a huge impact on my life. There are still a few years that I won’t recover of memories. Then again, it was brought to my attention, that quiet possibly anyone who went through the Covid pandemic can relate to. Of time lost with family and friends.

As I sit here now, it literally is still incomprehensible that my niece is nine years old. That I missed some valuable years of her life, at least in my mind they are lost. That I cannot ever recover memories that either weren’t created or existed, not for my recall at least. We lost time, actually I was losing time before the pandemic. I was trapped inside my own head for a time being, where the memories just weren’t there. Yet, I still existed.

I was told I had dementia at age 40…. I’m now 45. How did I manage to lose nearly three years of awesomeness, yet I still am here on this earth to tell you this story? Your guess is as good as mine. Personally, I literally chalk it up to my family, my friends, for toting me around like nothing happened, like I was still a human even though I was trapped in my head.

One of my besties recant stories to me, where I married off my husband to her. My instructions were that I had told her that she was to marry husband if I died, I made her promise. Yes, I did that, and somedays I think she’s totally okay with that option. *Insert giggle* Then there are the friends that recant the stories of how I reminded them of family struggling with Alzheimer’s or Dementia, where they saw me in public and saw the glimpse of recognition in my eyes, but the question of not knowing them, so they didn’t bother to stop to actually talk to me. I still sit in awe of those moments that I don’t recall.

Memory loss was a thing, and it’s still a thing that I think will bug me just a little for the rest of my days. There’s always a possibility I may find my way back into that hole. For a moment, I want to enlighten you, that if you have family that have Dementia, or Alzheimer’s that, it’s most important that you continue to act and behave as though they are your loved ones. It’s most important to make them know and feel that you still believe they are the people that they have always been to you. Coming from someone who was trapped in her head with no way to communicate, I truly have come to appreciate everyone who did interact with me or was there for me even in the worst of times for myself, it gave me a reason to live, it gave me the reason to fight.

Honestly, at that point in my life, I now know so many others who may find their demise the same way, and I’m not any doctor, but I can literally say, just because someone tells you that you are going to die of XYZ, doesn’t solidly mean that you lose all comprehension at that point. The little time that your loved one has on this earth, you should still respect them for the human that they are. Little do you know that some of them just may hear you. My thoughts come from having a great grandmother with Alzheimer’s, a grandmother with Dementia, and a grandfather that had ALS. Trust me when I say, after losing my grandfather to ALS and knowing that even though his body was shutting down around him, knowing that his mind had never shut off, or shut down, and that everything was dying around him, I’m almost blessed to have the insight I do right now. Love your loved ones, just as they are, just as much as you can.

I’m lucky enough to say, EVERY single person who knew that I was sick, had an understanding, and had a loving hand when it came to taking care of me as I fought within my own head to break back out to be here today. Not one gave up the fight, as I have never had a spirit that was willing to quit.

The MOLD…

SpoonfulofDiva Leave a comment

That the darkness brought into my life.

Remember that tornado? Remember the nails it removed from my roof? Well think about that for a minute. Those tiny little nail holes can let in some water over the years. As time progressed, hidden mold began to grow in a wall, that was shared between my garage and bedroom.

Some people in your household can totally be unaffected by things like this, where others will fall down with illness so fast it will make your head spin. That’s me, not that I volunteered for the position, but somehow my susceptibility to neurotoxins is much higher than others in my household.

The science behind my susceptibility is that I’m genetically predisposed to this medical mystery.

Man in protective hazmat suit cleaning mold on the wall illustration

Stachybotrys mold was starting to grow silently hidden without our knowledge. Keep in mind, I had lived nearly 40 years not even knowing I had Mast Cell Activation, but all the signs were there. In fact, it didn’t even have a name until recently. Stachybotrys and aspergillus just happened to be secretly releasing neurotoxins into the air in my home, and no one had a clue this was occurring. It did take two to three years for the accumulation big enough to create a systemic whirlwind of illnesses that made no sense. The battle I was fighting didn’t make sense, but I was begging for my life back one piece at a time, as it was slowly taken from me.