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.
On this day, July 5, 2019, I changed my mind. I had changed my mind about a lot of things. The pain I was in, the depression I was suffering, the fact that I may lose my life entirely to a handful of diseases that were shutting my body down at such a young age. Things that normally “old people” suffered was going to destroy me before I even hit 50 years old. I had a laundry list of ailments. Those ailments may never go away but I decided the time I have left on this earth after years of fighting for answers and a diagnosis, I would change my trajectory.
“Depressive symptoms significantly impact the quality of life and prognosis of fibromyalgia patients. Therefore, the development of novel management approaches is crucial. Researchers and clinicians in the fields of immunology and psychiatry should conduct future studies with larger sample sizes to provide more robust evidence on the efficacy of current approaches in addressing depressive symptoms in people with fibromyalgia.” states National Library of Medicine website.
Somedays I wake up just fine, other days I’m in pain worse than the day before, but I wrote a promise to myself, my family and my friends and posted it for all to see. I have not looked back from that moment. Now I’m here being able to journal, record, and research and share my findings of the very illnesses that brought me to the brink of death. I encourage you to also find strength in yourself as you read my personal promise that I had written to myself and loved ones four years ago.
MY PROMISE TO FIBROMYALGIA
My brain says, “I can’t”… but I did it anyway.
My body groaned and ached… but I did it anyway.
Then it started tremoring… and I still did it anyway.
The day after, my brain says, “I’m hurt, so I’ll hurt you!”… but I got up out of bed anyway.
My body says “you hurt me, so I’ll hurt you!”… yet I’m up and moving and doing things anyway!
How can a person endure so much pain, and still do it anyway?
Because my heart says, “You have to enjoy as much of what’s left of this precious life as you can, so do it anyway!”
And so here I am. My life has changed, my world has changed. I may have to take naps in between, I may have to take meds to do it, I may have to do everything in short little bursts…..but no matter how I get it done, I’m going to do it anyway!
Because my heart is untouched, and I’m going to love this life anyway.
There’s been a lot happening in my life that doesn’t happen to be anything about my chronic illnesses, however they directly have an effect on my wellness. Remember, that just because you are doing everything possible to control your illnesses, the outside world and uncontrollable influences can send you into a flare. I’m really allergic to stress, even emotional stress. How can I tell?
I have this superhuman ability to gain like 5 to 10 lbs. overnight, which my kidney specialist told me one time was absolutely impossible. No one can eat or drink that much in one day for that to just appear. No doctor had an answer. However, here I was being this fabulous super growing and shrinking woman depending on what was going on in my life. Never did we realize at that point in time, it was directly correlating with the stress that I was under. Yet here I am, rocking it, even when my body was in a peaceful state as far as illness the day before.
So, I’m going to share with you some wisdom, that has seemed to come to me over the past few years. It took a group of my family elders and myself along with an example that shortly followed that brought me to this outright wisdom.
In Parenthood and Life, “It is okay to be human, but it’s always best to be a GOOD human.”
It takes nothing to be a Good Human to Yourself. Picture Credit: Engin_Akyurt/Pixabay
There’s been many different times I’ve asked myself over my lifetime, why certain people just choose to be a bad human. Then you wonder what kind of people would raise such a human. I am naturally a curious person and a people watcher. I even studied a bit of psychology when I was young in high school prepping for college, along with any and every child development course I could and even though I didn’t follow through with any type of degree, it certainly helped me in some pretty tight spots myself.
You can meet some of the most insanely nice people and then there are just inherently bad humans, ones that steal, lie, cheat and or abuse others. However, you meet their families and parents and question “How is that even possible?” No matter the upbringing, humans are responsible and should be accountable for their own actions, and sometimes they just aren’t, and refuse to.
It’s going to directly affect you in one way or another, but you still have the choice to still be a Good Human, and act accordingly if someone does something to you that hurts you. You have control on how you react to certain situations. You do not have to bow down to their tactics, walk their path, you have the ability as a human to walk away. Even good humans, still make mistakes, choose the wrong path inadvertently, but eventually they find their way back on the right path. It takes time and it takes patience for them to catch back up, but everyone has to make their own path, and that’s okay. Like I said, it’s okay to be human.
You personally, for your well-being (and sometimes health), have to be willing to allow yourself the patience and kindness to remove yourself from that situation. You have to remember “I am human too; I have offered my help, my love, and my advice, that’s all I have to help a fellow human. I can only maintain the things that are within my control.” Whether it’s a family member, or just another human friend, sometimes you need space, and that’s okay. As a Good Human, you also have to be a GOOD HUMAN TO YOURSELF AS WELL.
Let peace reside in your heart as much as possible, to reach the best possible feeling of well-being whether you are chronically ill or not. Love and Guide where you can and forgive the ones that choose differently because it’s out of your control. –Wellness wishes from your Author
Why Neurogenesis and taking notes are so very important.
“But I love it!” The boy is grasping his paper tube roll with all his might. It is now his prized possession. Kids are hilarious, you can buy them a $50 toy but they would rather play with the boxes they came in, or latch onto the wrapping paper tube that supplied the paper you wrapped said present in.
One of our dearest friends gifted our little man with a wrapping paper tube. This was now his only source of fun. Also, a source of annoyance and bacteria. Talking into the tube, shouting at people, using it as a megaphone of sorts. Poking people, using it as a cane, just like “Dr. House” on the television. Sticking it in muddy floorboard water in the vehicle on the trip home and licking it like an ice cream cone. Arguing that now he needs to SLEEP with it. Arguing he wants to take it everywhere with him, oh to be four again.
These are memories that would have been forever lost for me had I not written them down. Also a habit that once I formed it, I continued to do even when I was sick. They are scattered about in notebooks, stored in files on my NOTE on my phone, and various other places. Had I not formed this habit early on, I wouldn’t be able to supply you with the valuable history and information in how I navigated my chronic illness and beat my death date of 5 years. It’s been an entire YEAR from the date I was supposed to meet my demise.
I also began a log of sorts for my kids when I was given the approximation, I only got a few pages in for both of kids at home, logging memories for them that I had scattered about, until I “forgot” about that project. In hopes that if I did meet my demise, that they would have cherished memories I had written down in my own handwriting for them to keep forever. Out of all the advice I can give you parents, I pray that you listen to me on this. If you are not doing that, I beg of you to do it now, because as the old adage goes, “TOMORROW IS NEVER PROMISED.”
Yep, this is my brain, with all the black voids.
The really cool part is, I had enough gumption to keep a running list of medications, and supplements I was managing, and a list of all my doctors, neatly typed on a few sheets of paper stapled and attached to any new business cards or information I had to add to the list in my “drug purse” at all times, to take everywhere with me. This came in handy for a few ER visits, and every doctor visit I had to attend by myself, when there wasn’t a caretaker with me. It would have also been even handier had I been totally incapable of doing anything or communicating at all. **Another piece of advice for you or your loved ones if you are suffering from chronic, systemic, or fatal illness. ** My goal was to stay alive long enough, to figure it out, even if no one could do it for me. I had given up a lot of hope that anyone was going to be able to save my life before my demise, so with what little energy I had, I put all my effort into figuring out my body for myself, with my regular practitioner along for the ride. (His file on me cannot even fit in a 4-inch binder.)
Solidly I can contribute my survival on my desperate need to figure out the answers that no one seemed to be able to give me. They could placate symptoms with a ton of different drugs, but I wasn’t okay with dying, not yet. Neat little fact for the ones who don’t personally know me, I was in the automotive field for years, I have a mechanical engineering type frame of mind. If there is one thing I know for certain, there has to be a CORE issue to what was causing ALL of these issues, and even with the MRIs it still took me two years to conclude, that first and foremost my brain damage, could wholly be my issue. A friend in the medical field mentioned to me once that they had read, scientists had figured out how to regenerate brain matter. Shortly after there was another friend who birthed a son. No one knew until he started walking that something wasn’t “quite right” he had a limp. Several tests later and an MRI shown that the frontal cortex of his left brain was entirely missing, he was born that way. However, funny thing, nothing else seemed to be wrong, his brain started to rewire itself around what he was born with. If you need a sign, that was the sign I needed to not give up. I went to work researching like a mad woman, and I had the attention span of a gnat, and the big words confused me, most of it didn’t make sense, but when something did click, you bet your ass, I was taking notes on it until I came to a conclusion or a dead end, or I found a supplement to TRY to see if it would get me anywhere. I REFUSED to listen, I REFUSED to submit to a fate that I did not want, and here I am.
One thing I had to be careful about supplements was not falling for all the combination supplements out there. I had Interstitial Cystitis, I had to be very choosy about the things I put in my body, as to not aggravate my bladder. Funny thing, my bladder was the source of my heartburn, but it was also the source of my asthma. I VERY rarely ever have to use my MONTEKULAST (but I still keep it on hand, just in case) or my rescue inhaler in nearly four years. Even through the pandemic, I didn’t even need it when I got the second strain, my symptoms were very mild and short lived. I always choose supplements which I know the composition inside and out, and trust me, my feeds were blowing up with “miracle” supplements for everything. It seems so much easier to take ONE PILL, right? Nope, not this girl who’s allergic to ALL THE BULLSHIT.
My focus became figuring out how to repair my nervous system and create neurogenesis. (Or at least simulate it.) Again, I’m not a doctor, and I won’t even know until probably next year whether or not I really did anything to the white matter that is missing in that thick skull of mine. However, I do know, that I am a100% a functioning human compared to where I was at in 2019. I still do have massive migraines and headaches from time to time (I like to think that it’s just brain matter growing back, I don’t care if it’s denial. I’m stubborn). Mast Cell Activation will be a thing forever as far as I know. I still have fibromyalgia (at times) it keeps getting less and less though, Interstitial Cystitis may be something I will have forever, and a little neuropathy, I am able to navigate all of these successfully without outside help of prescription medications, and I’m damn proud of that. I’m here TODAY in the process of writing a book, a blog, and teach others there is HOPE, and you don’t always have to submit to placating yourself with a bunch of crazy medications the doctors hand you if you don’t really have to or want to. My favorite part of all of it, I can read and understand, and REMEMBER everything except TWO years, where I have to almost rely solely on most of my notes. MIND OVER MATTER PEOPLE!!! Quite literally, I have more mind than matter, I believe. Ha!
“NEUROGENESIS – DEFINITION
the birth of new neurons. Although most neurogenesis occurs before birth, it is also recognized to continue into adulthood in at least two areas: the hippocampus and the subventricular zone.”
Why the brain is necessary for all of us to function.
For me, today is a day of remembrance. In the past 30 days, I have now attended a memorial and funeral for two parents of different childhood friends, who lost their ability to remember. Alzheimer’s and Dementia have touched so many lives especially people and families that are important to me.
In retrospect it’s been almost a blessing that I suffered an illness that gave me a glimpse into my future with dementia, along with the experiences with my own family members that I had already lost. I was able to provide much needed wisdom when asked on how to navigate some of the “humane” matters with others who were already ill around me.
Until I see the MRI for myself in the near future, I am not going to glorify that the black spaces are now miraculously filled with brain matter for myself. I also will never claim a miraculous cure for anything. I do fully expect to lose my life eventually to dementia, but in the meantime, I’m going to live my life to the fullest and continue to educate myself and others as I find supplements to assist me in healing and functioning.
When researching an illness, I research how the brain operates or dysfunctions to cause said illness. Interstitial Cystitis is an actual physical dysfunction of an organ; however, the brain operates histamine reactions and releases that activate and deactivate my Mast Cell Activation Syndrome. In fact, almost ALL of my illnesses with the exception of the interstitial cystitis all tie into the brain in some way. Mast Cell Activation Syndrome, Neuropathy, Fibromyalgia, and obviously Dementia.
A little survey and digging in the Mast Cell patient group I participate in, and I sat one day and wrote down a list of 240 various different illnesses on the list (when someone polled our group on the various diagnoses’ we all had, including arthritis, and they all tie back into the brain. When I discovered that, I knew then, I had to start safeguarding my mainframe, as soon as possible, and with fierceness.
This turned me onto a host of different things that I needed to address. Cognitive Function was certainly one, and regaining my control of my memory and recovery of lost memory was another. Then regaining my energy, and focus. I found a few supplements that I simply “tried” to see if it did anything for me. The benefits had to be WORTH it, and the side effects had to be nothing or very limited for myself.
I took some of these for a few months, and started making HUGE gains, then I did the worst thing I could do, and stopped the supplements. Why you ask… because I’m the guinea pig, I’m my own test subject, and what I found was I began to degrade as quickly as I had started making improvements. In September of 2022 I stopped the supplements, and by December, I had a host of symptoms begun again, like the ADHD, the ability to not be able to clearly think, the litany of aches and pains, on top of forgetting my daily schedules. I finally admitted to my therapist what I had done at that time, and she said that it was “Invaluable” information to include in my research, but highly suggested that I begin them again. I really didn’t need them to tell me to, because that morning before I admitted to myself defeat, I may have to permanently keep myself on the Amazon Subscribe & Save program for these pills. However, I am COMPLETELY 100% totally okay with these results, it is a far car better than a ton of prescriptions from the doctors to mitigate symptoms, multiple doctor visits, and ER visits for allergic reactions and mania, or health anxiety.
My last appointment was this past Thursday, and after yet another introduction of the polyphenol Green Coffee Extract, gave me everything that I needed. Her response was to me, “You are oddly more normal, calm, controlled.” I chimed in, “I can also use BIG WORDS again!” We giggled together on that one. One day, I may ask her to actually write me an excerpt about watching my decline and then my regrowth, it’d be interesting to get it from her perspective.
My journey has been slow in progress because I am researching, and I am my own test subject, and I suggest that you do the same, research, and trust your body. You know your body best.
What has gotten me to this progress so far has been the following regimen:
Now each person is different, and only respond to certain antihistamines, to find balance, sometimes you need to take more than one of each antihistamine. My balance stopped at 4 times a day, half an hour before I ingest any food, breakfast, lunch and dinner, and before bedtime. My antihistamine intake is 2 Cetirizine and 3 Famotidine every time I take a “dose”. That is what keeps me from reacting to foods, bug bites, and various other things that my mast cells deem too much histamine for the day, oh and the biggest “histamine release” is when we get sleepy and go to sleep, that is the necessity for taking them at night.
**I recommend you take a look at my blog post about Antihistamines. Take notes on your major symptoms, and start with looking at what receptor blockers are going to get rid of those reactions first.** As always, check with your physician if you are on anything. I’m not a licensed physician, this is just what got me to where I am at.
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.
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.
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.
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…
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.
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.
ALLERGICTO YOURBULLSHIT 