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“Mom, bury me with my butt in the air, so everyone can slap me on the way out.”

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The confident little man, told me at the tender age of 5.

At that moment, I knew that this child in particular, had no plans anytime soon of behaving himself. He fully intends to leave this earth in a blaze of glory. Recently he ventured out on his own at age 18 and managed to crash and burn within two weeks of leaving the homestead, but we’ve got time, he’s going to one up himself until he hits a wall. In his defense, he warned me years ago. However, I plan to fulfill his final wishes anyway I can. After all, I tell everyone that story, so as to make sure if I am gone, someone will manage to get it done, just for me, so I can laugh from the unearthly plains. (Remember, how I said, I was allergic to stress? Yes, he’s THAT child, and I am owed a slap on his behind on the way out. Haha)

I’ve spent most of my time last week remembering people, mourning a loss of someone near and dear to our family, and reorganizing my room in the process. A few weeks ago, it was a father of a bestie who was diagnosed with Alzheimer’s. This past week, a mother of a different best friend, whom had Dementia.

I honestly wish I had taken a before picture of my bedroom, but alas I didn’t. When I started falling ill, my bedroom became a little bit of a hoard, since 2014 I’ve been collecting many things. When you start to lose mental functionality, and also if you have ADHD or ADD, there is a thing called, OBJECT PERMANENCE. You may notice yourself, or even your children leaving various objects in plain view so you remember you have them so you can use them. Don’t you dare ever put anything in boxes, you’ll forget you have them and then buy more, turning into a mini hoard.

Honestly, I’m grateful for the ability to now, 1) Have the energy and focus to start tackling the “hoard”, 2) Have the ability to recognize now, why I was doing what I was doing., 3) Share this knowledge with you, or your loved ones so they can recognize an issue before it becomes a major problem.

Your loved ones, who would regularly and normally stay fairly well organized and confident in their function, start to show signs of object permanence, starting to leave things in “convenient” places so they don’t “forget” to do things or use things daily. It actually comes on pretty subtle at first. Then, there is obsessive compulsive behaviors as well coupled with the “convenient” storage of items they need daily. It’s an ugly vicious cycle to lose your cognitive function, and the family has to constantly ask themselves, “Why did they do that?” I’m telling you the why. However, don’t you dare touch their system that they have created, because there will be an argument that ensues, or at least a lot of grumbling, because they’ve lost enough cognitive or memory to remember where it was placed, once you take it out of its position to clean the house again. To be honest, they’re going to forget anyway eventually if you know they don’t use it daily, and they definitely won’t remember it at all if it’s placed in a box next to them, it’s in a box, and it is UNSEEN. “Out of sight, out of mind.”

During the process of cleaning and organizing I’ve found a treasure trove of notes that I had written myself, organized my supplements, and took up collection of EVERY SINGLE prescription bottle they had me on during my years of illness. It’s an impressive collection, and I don’t suggest you take modern medicine by the handfuls like this. Yes, there is at least two bottles that are duplicates, but that’s because it’s how it is filled, and a few creams and lotions per prescription are tossed in to balance out the multitudes of drugs my body was consuming. Essentially, I was on at least 10 medications simultaneously at all times.

I came across one of my empty bottles of Naringin as well, and I was reminded of just how far I’ve come from the days of modern medicine to healing myself naturally. Naringin deserves a Grammy or Oscar in my lineup. It’s one of the top supplements that keeps me going. To see the supplement, just follow the link here: https://amzn.to/3JCQakR

“The results of the present study concluded that naringin can effectively improve the cognitive abilities of mice with memory impairment and exert neuroprotective effects. Thus, naringin may be a promising target drug candidate for the treatment of Alzheimer’s disease.”

Meng X, Fu M, Wang S, Chen W, Wang J, Zhang N. Naringin ameliorates memory deficits and exerts neuroprotective effects in a mouse model of Alzheimer’s disease by regulating multiple metabolic pathways. Mol Med Rep. 2021 May;23(5):332. doi: 10.3892/mmr.2021.11971. Epub 2021 Mar 24. PMID: 33760152; PMCID: PMC7974313.

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The Easter Egg Hunt for Healing!

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Looking for the answers on how to heal.

Swinging an Easter basket in one hand wearing her new yellow frilly dress, and black shiny patent leather shoes running through the tufts of thick green grass, searching frantically for colorful candy filled plastic easter eggs, that was me. Each egg found would come with candy, money, or a prize, and never left a recipient in disappointment with each brightly colored find. Family who hid the eggs would even get devious, sometimes you had to search high and low, even though I was a shorter version of most humans. Easter was so much fun! I also learned an invaluable lesson from Easter Egg hunts. Never leave any stone unturned, check every nook and cranny, even check the gutters and trashcans.

Plastic Easter Eggs
Easter Baskets for Adults & Children

My search for knowledge, sincerely comes from what I learned Easter Egg Hunting, and I implore you and our younger generations to do the same. When it comes to your health, when it comes to life, or anything that you need to gain knowledge for or from. One valuable piece of wisdom my father imparted on me as a child was, “No matter what the situation, your EDUCATION can never be taken from you. No one, the only one that can deny you EDUCATION is yourself.” I’ve carried that with me forever, and I share that sentiment with any human being I can.

My search for knowledge about my health, started at home. Gutters were first, I started looking at my bowels. What I was consuming and what was coming out are VERY important. Then, I began to search higher. Once I knew I wasn’t poisoning myself, to the best of my knowledge, I got online and started Googling. The one thing everyone tells you not to do, but remember, I don’t listen. I was looking for answers on how to heal my brain, and how to thwart my Mast Cell reactions and all the histamine my body was producing. I needed to do something and pronto.

I know what you are saying to yourself, “Why didn’t she go to an allergist?” Funny story, I did that too. I was allergic to practically everything, and then I was allergic to the steroids that was supposed to counteract the reactions to the shots. I went in more miserable than when I came out. It wasn’t working, or worth the misery I was putting myself through. All the allergist wanted to do was keep giving me the shots, even that doctor didn’t really look into WHY my body seemed to react to EVERYTHING. I fired that doctor too.

My tunnel of light was closing quickly, it’s hard to explain. In a sense, I knew I was losing my thought processing ability, I was in fight or flight mode, just trying out how to figure things out, to save my life. (This also raises histamine levels, cortisol levels, and sends you into a stress histamine response as well. With each waking day, I knew I was step closer to losing my grip on reality.) At one point, the only thing I could manage to do was crossword puzzles, and that took FOREVER just to get one done. I used to be an ace at those as a child, I could have one done in less than 3 minutes.

Popped open my laptop and went online to find “Easter Eggs” of information. I searched many things, but educating myself on histamine was the start.

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.

I plead insanity…Cytokine Storm Mania

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My kids can vouch for me.

Being chronically ill is likened to being traumatized all over again. On top of being a survivor of previous abusive situations, I likened my situation to triggering all of the above all at once. With Mast Cell Activation your body goes into a cytokine storm. When I mentioned being allergic to your bullshit, my bullshit, stress, and all the other junk in between, I wasn’t kidding. It’s true.

Your body has a response mechanism to cytokine storms, and once your mast cells are activated, no matter the mitigating factor, it activates my mast cells as well. Stress me out, and I lose my shit. If my body is in critical attack, I literally lose my shit… sometimes I forget everything, need to sleep, or scream. I really have no control over it. Other times I hyper react, overthink, and literally drive everyone nuts around me talking about a subject matter three or four times until they’re bored. It’s essentially like having ADHD mixed with a good dose of memory loss.

Most of my life it’s been contributed to me being annoying, obnoxious, crazy. Well essentially, I do go crazy a little. When my body is in crisis at the ER, sometimes I can black out and say things I don’t even know I have said. One critical time, the resident doctor feared even coming into the room to talk to me even before I was released.

I had went to an outdoor wedding that day, and I was just not feeling right. My husband and I had left a little early, and I went home to change clothes. Something was brewing and I couldn’t put my finger on it at that moment. I was going to the garage, and had told my husband, I needed to go to the hospital. I made it to the landing in that garage, and bam, total neurological shut down. I could speak, but I couldn’t open my eyes, I couldn’t move my body, arms and legs totally dysfunctional. My caretaker and husband tag teamed picking me up and sort of dragging me to the truck to get me to the hospital. I am ever so grateful for the wonderful family I have in my life.

That was my life changing moment in the ER. My body was overcome by mold and yeast, I was literally foaming at the mouth, the thrush was so bad in my mouth. I had taken 30 Benadryl to keep me alive, because who can freaking afford an EPI Pen at those kinds of prices, and then still have to go to the ER anyway?! It’s highway robbery to try and save your life. I was in anaphylactic shock, and I needed help.

My husband took me to the nearest ER and they stuck me directly in a Covid wing, my body had went into neurological shut down, I seized in their waiting room while checking in, yet they stuck me in a COVID wing! I was furious. As soon as my legs could work again (I’m assuming from ingesting all the Benadryl), I got up out of that bed and told the whole staff to, “Go fuck yourselves.” Not my proudest moment, because they called security and threatened to call the police until they got the IV start out of my arm. I promptly had my husband drive me to the next nearest ER.

That moment was when I really freaked out the resident doctor, and my husband really doesn’t tell me much other than, he said, “You got MEAN.” I had blacked out. The paresthesia in my veins was so bad at that point, that it took them four hours to get the IV in, and when I did “come to life” again, I was confused but not surprised they had me strapped to the bed. The turning point, I had full function of my brain again, for the first time in years, my body fully functioning like normal. I wanted to see the man who listened, and administered the treatment that saved my life that day! It took a GRAND amount of pleading with the nurses “I’m nice again, I promise.” Sheepishly the doctor came in to receive the “thank you” that he so very much deserved and appreciated, then I told him my story, and he told me to write the book.

Apparently, the mold and yeasts had taken over my body! When they Iv’d an antifungal through my veins, everything miraculously came back to me! I don’t knock the medical field in anyway shape or form, but I am a product of being mistreated over and over again, and when I say, “You can fire your doctor!” I damn well mean it! Find the ones who are in the field and ask why they started it in the first place, TO HELP PEOPLE. You treat that first appointment like you are interviewing them. Unless you are in a position you can’t advocate for yourself, NEVER RELENT to just letting them do whatever. FIGHT for yourself and your needs! However, I suggest you do it as nicely as possible. My mother-in-law always told me, “You can catch more bees with honey, than you can with vinegar.” She’s not wrong.

That day was the day, I realized, that there was SOMETHING in my Garage, that was a PROBLEM, and I set out to find why! After all, I had suffered seizures in there, and a concussion… it was time to figure out why my body had neurological problems with my own home.

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.

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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Never Listening = Natural Remedies

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So with no meds…. where do I go from here? My search for healing starts with Amazon…

You are going to see ads for the things I’m using, and feel free to do the same research that I did. I’ve spent hours, days, months, but feel free if you would like to start reading the medical journals like I did.

If you have gotten to this blog, and you’ve followed all the blogs since I have started, you are going to realize that I have a HOST of ailments, along with Mast Cell Activation, Fibromyalgia, and Neuropathy, Paresthesia, and Interstitial Cystitis of the bladder, so this woman has literally been researching all the systems on Google and reading the articles, to find NATURAL remedies that didn’t require me to ingest allergens, and acids. Neat little fact, I’m allergic to peanuts, trees, grass, oh and some fungus (due to the mold) and YEAST, yes, I’m allergic to the yeast that grows in our own bodies. Wrap your mind around that!

I’m not a webpage editor or anything, so if you just follow the links to the things that I found that help me, you can order them directly.

When you need a little pick me up…

https://ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=allergictobs-20&language=en_US&marketplace=amazon&region=US&placement=B0085YPIQE&asins=B0085YPIQE&linkId=a9c174482d57778adf1b14afd1157502&show_border=true&link_opens_in_new_window=true
Green Coffee Extract provides Polyphenols important for Hypothalamus Function in your brain!

And when it comes to my brain I’m all about neurodegeneration and repair, so if you read up on this link, you’ll find why Polyphenols are important to me as well!

Nutrients for hypothalamus and pituitary gland production (medicalnewstoday.com)

https://ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=allergictobs-20&language=en_US&marketplace=amazon&region=US&placement=B07C6JRH82&asins=B07C6JRH82&linkId=1299c3d7f41cef42094dc8d081042999&show_border=true&link_opens_in_new_window=true
For Urinary Tract Health 1-2 tsp in warm water a day… is just as beneficial!

I really wish I would have learned about Forest Flame Tree powder also known as Butea Monosperma years ago, the benefits are amazing. Read up on the link below if you don’t believe me. It tastes similar to instant powder tea, so if you can make a shot in warm water and drink it quickly, it’s not so bad. You can visit the article link listed below, if you want to see the benefits for yourself.

https://www.researchgate.net/publication/333973413_Butea_Monosperma_Phytochemistry_and_Pharmacology

Allergic to Yoga…

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If you ever wanted an excuse to be allergic to exercise, Mast Cell Activation Syndrome and Fibromyalgia are your friends.

Desperate for answers I employed a friend to follow me to this giant diagnostic hospital for answers. My family physician thought it would be time for me to visit a Rheumatologist. Considering the options that I was running out of, I opted for the closest facility.

Neat fact, I should have opted to be dumped at the front door, because just getting to where we needed to be in that building I wanted to curl up in a ball and die. I do have to say, my friend opted to get me a wheelchair, but I’m a little stubborn about resorting to that when my legs aren’t broken, they just hurt ALOT. By the time we got to the waiting area, I have nothing left in my reserves, exertion of any sort would make me sleep for days. I wanted to cut off my feet they hurt so bad. When I would get overheated, I couldn’t breathe, I’d break out in a weird rash, sweats, EVERYTHING on my body HURT. I was lucky if I wasn’t having Parkinson’s like tremoring, and walking with all the physical pain on top of the random neurological symptoms was HARD. I was 40 at this time, (before my actual dementia diagnosis I believe) and I’m hunched over with a dementia type gait, because my nervous system has had ENOUGH, I’m shuffling around like I’m 80-90 yrs. old like I’d lived my best life already, I’m just getting started!

I got to visit the doctor along with my huge 4″ binder file that was forwarded to them before I even attended the facility. I was sent for random testing, then the Rheumatologist walks in starts poking me, and talking with me, and EVERYTHING she touched hurt. Oh…you have Fibromyalgia. Oh great, I thought to myself. This doctor quickly leaves the room and informs me I’m to see another person at another facility in an hour. “ANOTHER DIAGNOSIS, that people think is a load of total nonsense”, I thought to myself. (I only had a few believers in my small circle of loved ones that I was even ill at all.) I used to be one of those people that didn’t believe Fibromyalgia was a thing. In a few short minutes I was ever so sorry for EVER thinking that way, because when you look at people with chronic illness, sometimes YOU HAVE NO IDEA there’s anything wrong, and now I WAS ONE OF THOSE PATIENTS, talk about eating a HUGE PIECE OF HUMBLE PIE.

Clarification is needed at this moment in time. Apparently when your brain shrinks and you start to have pain issues like I have, your brain is the central (computer) of your nervous system. It runs all of the things, including the nervous system that is all those tiny wires that go all the way to your fingertips, toes, and in your skin. Well, when they get mad…. you’re just done. Just sleep is what my neurologist had told me. The only thing that will make it calm down is to hit the reset button on your personal computer (brain) so it’s time you sleep. Let me tell you, SLEEP was my OTHER hobby already, but the guy isn’t lying. (Note: When I mean sleep, I was taking naps throughout the day, because I had some insane insomnia at night, I was not actually getting a full 8 hours of restful sleep a night and that IS WAY MORE IMPORTANT than napping.) Later on, I would figure out that sleep is a big deal when you are basically experiencing neurological pain and neuroinflammatory processes, but I wouldn’t learn that for a long time later.

Back to the whole big diagnostic hospital event…. they sent me to see the actual REAL NURSE RATCHED in the flesh. At least that’s what my friend and I named her. I sat in front of this woman, as she spoke down to me like I WAS SEEKING MEDS. I had already told her my journey, and shared with her I WAS ALLERGIC to all said NARCOTICS, and ALL I WANT IS MY LIFE BACK, and explained to her, that I NEVER SIT STILL until I got sick. I WANT MY LIFE BACK without the drugs! This woman for real, asked me straight up, “Have you tried YOGA?!” I don’t remember the colorful things that followed but I did sum it up, we are wasting each other’s time and left. I WAS SO ALLERGIC TO HER JABBER, I just wanted to go home.

“People with fibromyalgia experienced significant pain and fatigue in the exercising muscle during recovery from low-intensity and short-duration resistance exercise, with greater pain during concentric contractions.” states the PubMed website.

https://pubmed.ncbi.nlm.nih.gov/37384640/

Observational Study posted about Localized Pain and Fatigue During Recovery From Submaximal Resistance Exercise in People With Fibromyalgia

The stress just made me hurt worse, and I was over the day, and so was my friend to be honest. Obviously, that physician isn’t aware that Mast Cell Activation Syndrome makes you ALLERGIC to exercise and physical exertion. (Little did I know that basically, Fibromyalgia gave you the same symptoms after exertion too.) I guess I feel as though our medical system is flawed because when new illnesses are identified there should be some type of education about it, and there is. Some people receive it, others do not, that goes for both patients and physicians; there’s a disconnect. However, it’s the free will of the physicians you employ on whether or not they choose to continue to educate themselves and indulge in educating you in the illnesses you are diagnosed with. In this particular experience, I received a diagnosis with no education, then sent to Nurse Ratched to ask me if I had tried yoga, with no backstory or education as to why I needed it, or the benefits to it and the diagnosis I had just received a few hours before. I was confused, tired, angry, and in excruciating pain, just to make the trip and the walk into these facilities to see these people.

Remember, physicians can be hired and fired too, and you can get second opinions. Just because you have seen one doesn’t always mean you take their word as the written word of some saint in a book like the Bible. Trust your instincts and will to live!

Looking back on this experience, it was the start of when I began educating myself. In hindsight, I just got so mad that I still knew nothing when I left. Indirectly, it sent me into a domino effect of healing. First, I started reading, that was neurological stimulation even if I read only one paragraph a day, if you know, you know that brain fog is no joke. This in turn exercised my brain just enough to remain in the real world long enough to continue to strive for another few paragraphs the next day, until I was reading solidly again. Second, I did figure out that any type of exercise is better than no exercise, whether its walking in a pool, doing a sauna, just light stretching, or yoga, or simply going grocery shopping it stimulates oxygen in the brain and that was particularly important for my central nervous system. Do I exercise? NO, but I did force myself to remain as active as my body would allow, and even now I still overdo it, and have to sleep for a day or two. Has the pain improved? Absolutely! It doesn’t happen overnight, but out of pure stubbornness you got to start somewhere, right? I did.

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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Another Bottle of Pills on the wall…

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Another bottle of pills…take one down, pass it around, another prescription to add to them all!

I have a shelf…. that holds EVERY bottle of prescription pills, that followed me everywhere along the way. If you see this shelf, it harbors, the pills, creams, powders, and various elixirs, some of them missing already, that carried me throughout this systemic illness. I don’t use them, some of them are a few years old, but when I was losing my mind, I was trusting that with each symptom, each prescription handed to me, would garner me a glimpse of relief.

Some of those pills did, some did not, and some made me feel like I was going blind, or various other side effects. I’m not saying don’t do what your physicians recommend doing, but remember, I don’t listen, and now I’m hard of hearing (at least in the left ear: never sneeze with a cotton swab in your left ear, you can pop your ear drum, you know that warning label… yeah you get my point)

That my dear is apparently your job, or your care taker’s job. Who has time for that? Well FIND THE DAMN TIME child, your momma isn’t going to do it for you. This was at the point, where I was taking my health into my own hands and REFUSED to let anyone put me in my grave early, or make me leave my kids when they need me the most, without putting up the biggest damn fight of my life. I was supposed to be dead by February of 2022, I’m still here bitches!

You get diagnosed with something like Early Onset Dementia, and literally you are lucky if you have 4 years left. Mind you, I still may have to relinquish to dementia, but dammit…not yet, not right now, I refuse. I am curious about that MRI though, if I have filled the black deficits in my head or not, or if they are getting worse. I do know one thing, this woman right here…. feels better than she has in years, and here I am writing the story to live forever on the interwebs. If you have found me, there is a reason…. stay tuned!!