Brain Fog, Memory Loss: Memories and how to keep them…

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.”

https://neuroscientificallychallenged.com/glossary/neurogenesis

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

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.


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