Tag Pandemic

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

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

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

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

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

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

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

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

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

Happy Holidays and All The Best

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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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Marrying your spouse off before you die…

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Memory Loss had impacted me the most.

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

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

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

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

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

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

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