A Journey into a Chronic Illness Survivor: Mast Cell Activation, Fibromyalgia, Interstitial Cystitis, Osteoarthritis, A blog of what has helped and where I go from here.
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.
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.
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.
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.
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.
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.
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.
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…
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,…
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…
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.
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.
“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.
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…
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…
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.…
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.
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.
That’s what one of my physicians told me, literally word for word.
This physician was staring at my x-ray puzzled as to why I looked so swollen and that I literally was full of human excrement, and hot air. Insert the various jokes, of how much I’ve heard that in my lifetime, for one various reason or another. It does NOTHING for your psyche when you are chronically ill, chronically bloated, chronically FULL to the point you can’t eat, sleep, walk, or function.
I wasn’t intending on hearing these words, but that was the most likely explanation, after all, I saw the x-rays myself, and that’s exactly what it looked like to me. Now at this point, we didn’t know I had Mast Cell Activation, we didn’t suspect that my mast cells were swelling my bowels so that they wouldn’t work, but that is exactly what was happening. So, for the first year, and 3 emergency room visits, what do you think they did? Gave me human drain cleaner, I drank more MiraLAX than what was absolutely necessary for a human to do, and WAYYY MORE than a colonoscopy requires.
Eventually when I found a Gastroenterologist that was willing to take my case and LISTEN to me (I did have to fire one.) we identified that all I had managed to do was get an awesome gut infection that required medication that required them to fight with my insurance to cover the $2k plus a pill to get rid of said infection. They managed to get it done, but it wasn’t fun, and it took 3 months to heal the infection. That Gastroenterologist was annoyed that not one PHYSICIAN, ER or otherwise had suggested when I’m consuming massive amounts of human drain cleaner that it would be wise of me to be on a probiotic, it could have prevented all of that mess.
Don’t ask me about the room. I couldn’t bend over to even clean. Felt like the blueberry girl from the Wonka movies.
Talk about a blow to the gut, very literally. I was suffering for nearly an entire year and a half, with no idea what I was fighting. Again, we didn’t know MCAS was even a thing then. However, the characteristic of mast cell is that when something is agitated in the body, it gets inflamed, much like the hives, or a mosquito bite or bee sting.
After we were able to get the bowels calmed down, it’s when we found that my lady parts had already been swollen 7 times the size due to polycystic ovarian syndrome, and Fibroids…and then scheduled to have said dysfunctional items to be removed. I’d only given birth to one child, blessed with helping many others grow, and married into becoming a mother to another child, I was okay at the age of 40 to give up my right to birth. I nearly died just giving birth to the first one, it took me YEARS to even get pregnant the first time, my psyche was already okay to give up that part of me. That’s when we found the bladder issue, my bladder had been crushed, it had created another issue in the process, it’s called Interstitial Cystitis of the bladder. Essentially when it swells because it’s mad, it rips the walls open and basically has an allergic reaction to anything I eat or drink, causing great abdominal pain, heartburn issues and the like.
One hot mess is where I was in life at that time. Couple that with beginning to lose my sanity… I wouldn’t wish what I had gone through at this point on anyone.
This was my live in caretaker, and also cousin. My partner in crime, when he was available to attend appointments with me. Blessed to have him with me every step of this journey.
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.
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!
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.
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.
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.
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.
ALLERGICTO YOURBULLSHIT 