Tag MCAS

Allergic to Motherhood

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…really just allergic to stress, but it’s literally the equivalent, right?

Motherhood has been probably one of my favorite jobs in life. As a little girl, I would dream of having tons of kids. I was privileged with one child, helped raise many others, and was blessed to remarry a man who had adopted a child. I loved motherhood, but the stress that came along with it, stress doesn’t love me, stress doesn’t play well with others. I was actually allergic to stress.

Stress would bring on more and more symptoms, it didn’t dawn on me at the time, that the more stress that piled on, the more my CNS (central nervous system) continued to take a nosedive, all the while, the hidden mold was still growing too. We hadn’t even found that yet.

There were days when Motherhood and stress got the better of me. My kids never got the better of me when I was sick, I think that hurt me the most, it downright depressed me. For about a year, I was lucky if I could even get off the couch at this point. Cooking became a thing of the past for me, and my husband would come home from a full day of work and cook, because I couldn’t move. Luckily enough our oldest graduated before my illness peaked and had already been moved from home, but the youngest was still home to experience ALL of this.

“Boyo” was probably one of the most trying children on my patience at times. Let’s face it, most days he caused a great deal of stress. The days I had to drive him to school, pick him up from school because he couldn’t seem to stay out of trouble during these times. Partially because he was used to the attention as the baby of the family, and at this point, the less attention he got, the more he acted out, classic for a parent who is terminally ill and a family trying to adjust to the loss, while they are still living, it was expected.

This wasn’t just a bad case of the flu; I had periods of losing the ability to speak (temporary aphasia? I really can’t explain it, I couldn’t even remember the words to say!). I had a day where I am just sitting on the couch with hubby, and my hand flipped a fork or spoon (I can’t remember the device) full of food at the “Boyo” across the room to the second couch on my right. (Youngest one in the home was gifted this nickname from the oldest one, it stuck.) He was stunned, I was stunned, my husband loses his shit and laughter abounded the rest of the night, as we were all clueless at why my “ghost hand” decided to just dole out a perfectly wonderful bite of food at our kid. “Ghost hand” heaved the utensil and all, while I sat delicately still holding my bowl. The looks on boyo and my face sent my husband into fits of laughter. If “oh shit”, “what the hell”, and confusion had a baby, I would imagine that was our faces in that moment.

However, for the stress he created, he also brought a HUGE amount of comedy to the table. Boyo took it upon himself to video me, tremoring while driving down the road, but he found a bit of comedy in the fact that during this particular drive I was tremoring to the music. This video in particular I have Parkinson like tremors that day, my head is bouncing, not on purpose.

Boyo was an adopted child, (my husband and his ex-had adopted, then divorced) and I was stepmom so we had him solidly in therapy weekly for many different reasons, so it could help him to work through some stuff. The coolest part of me even mentioning that, was when he was done with the therapist, I took his appointments over. THE BIGGEST BLESSING to keeping my stress levels down as much as possible, and horde every ounce of sanity I had left. This therapist watched me decline rapidly and help me and my family cope in however we needed. If I needed to bring a family member in with me to help me communicate my needs or thoughts with them, this woman was there through it all. She’s also been there through my healing, and boy, is she going to be so damn excited to see, that the blog has been started, and the book is coming!

**MY SUGGESTION: If you are chronically ill, or have systemic illness, or terminal, you get into that therapist as soon as possible, you seek every avenue to get to one now. No excuses or exceptions, if you are shelling out money hand over fist in co pays, or you have bills piling up, it doesn’t matter. FIRST AND FOREMOST, MENTAL HEALTH MATTERS!!!! If you give up your body to science fine but keep your head about you!

I’ve been encouraged by ALL of my physicians to write the book. There is a NEED to write this book. There is a NEED for this blog, because it seems that even pre-pandemic, when people would get sick, they would just submit to the will of popping a pill and relent their will to survive and thrive and just be sick forever. We need more survivors out there, after all; we survived the PANDEMIC, let’s get on with living!

I still don’t listen…

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(Sorry dad, it is what it is. I’m going to Google it.)

It’s a theme here, as you can see, I have a stubborn streak in me that is fierce. Refusing to listen as a child was my favorite hobby for many reasons. When these symptoms cropped up, I started Googling like hell, and that was the first thing I was told to STOP doing. Don’t Google it, don’t do what you pay the doctors to do.

Let me tell you this warning: If you Google, do it right. Google the system first, if you are losing blood after you’ve had diarrhea for days, search those webs for Gastrointestinal tract and start from scratch. The only way to learn about something is to gain the knowledge of its system and function first. Even though you own the car, and have for 7 years, doesn’t mean that you’ve ever seen the fuel light, or the little button that adjusts your gas pedal, but it MIGHT or MIGHT not be there, so remember this. Same with your body.

If you go for symptoms first, you’re going to panic, because every symptom is going to lead to a death-defying disease or illness. You’re going to be thinking that you’re in the midst of a heart attack, when you are literally just having heart palpitations because you just gave yourself a damn panic attack over searching the internet wrong.

I’ve spent years when my brain allowed me to have focus to read about the systems that were going awry in body. The doctors followed and treated my symptoms which found me a tiny bit of relief. Especially when it came to the GI tract and tachycardia, random rashes, and things they COULD treat. I say the things they COULD treat, because there’s one thing about me that they couldn’t really treat, and that was my dying brain. I had two MRIs and was scheduled for a third but got cancelled during the pandemic.

The first was to find my baseline 80 yr old brain. The second was to ck the possible (TBI traumatic brain injury) concussion that I had suffered from a fall when I lost function going down the stairs in my garage. Ever know why a dog won’t sit its arse directly on a concrete floor when it’s cold out? Well, I know now, and that shit is not pleasant, get the dog a damn rug. The third, was for yet another concussion, when I slipped on the ice at my new job and smacked my head so hard, that the officer who witnessed it turned his vehicle around, and asked if I needed EMT, but alas, when you are the only manager in the store with a key, I opted to just go on my merry way with my damn headache.

In my defense, my thought process was at the point where another blast to my head wasn’t really going to hurt, since that particular area that I had smacked on the iced over pavement, just so happened to already be missing brain matter there, so it probably won’t hurt much. *Insert sarcasm here* No dad, it didn’t “knock anymore sense” into my thick skull either, at least I don’t think so…I guess, this is where you can actually remind me that I don’t have a PHD, so you are absolutely correct there, I’m still not a doctor. However, we never got that MRI rescheduled either, we’ve had a few insurance changes since then, thanks to my hubby’s employer so, I’m going to wait this one out just a little bit longer, until our insurance changes again, probably another year, as it will probably take me six months just to get to see my neurologist again.

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.

Symptoms…

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And the never-ending list of specialists.

First and foremost, I had noticed that I had started steadily gaining weight. What I mean by that, for me is that I used to gain a good 10 lbs monthly the week before my “Aunt Flo” came to visit me. Then it would steadily die down. However, this time, it just kept coming and not disappearing. For some reason, it didn’t faze me at first, and it really should have.

My knowledge base in eating properly was pretty good. I used to work out consistently and had been able to maintain a healthy weight even after not working out for a few years. During my pregnancy with my child, I had been pre gestational diabetic, so I was sent to a nutritionist, and I checked my blood sugars often and ate appropriately for my daily needs. In fact, I was so worried about it, I REVISITED a nutritionist, just to REFRESH my memory, and was told I was doing everything right. Yet, I’m packing on weight, and one month it was 18lbs in a month!

Picture representing a host of specialists from: freepik

At this point, I have a cardiologist, a kidney specialist, a gastroenterologist, and my own gynecologist, and neurologist studying my case, along with a new practitioner because my reliable one had retired. The kidney specialist, who was one of the amazing people that saved my life, gave me hope and a willingness to keep fighting looked me in the eye and said, “There is NO WAY that any person on the planet can physically eat that much to possibly gain that much weight in one month.” My caloric intake had literally gone down to approximately 500 calories a day if I was lucky.

To consume food, would cause misery in my GI tract that I was not prepared for. My right-side abdomen would reel in pain, I would be doubled over in pain. My throat would feel like it was still consuming whatever I had eaten the day before. Heartburn had become my middle name. Even the task of brushing my teeth that would send me gagging, and my stomach “snapping’ like a rubber band against my esophagus (at least that’s the best way to explain it). None of it made sense, but here I was rocking systemic illness.

Yet I continued to gain… there were days that I would BALLOON, to the point that I actually looked pregnant. In fact, one Thanksgiving my family witnessed me eat a 6″ tiny plate of food and balloon from 38 inches around to 54 inches around, in a matter of three hours! I promptly went home to go to bed, missing out on my family I love so much.

Then there was the fact that I was losing my ability to remember things. My short-term memory was beginning to be shot, and I lost my ability to recall long term memories as well. Tremors in my hands took away my ability to bake and decorate cakes from my home when my kids slept. My favorite hobby and secondary way of making a tiny bit of income, and that was shot as well. My daytime job, it wasn’t a possibility at that point. I worked in the service industry. Customers that have known me since I was a child, whom I had dealt with at least once or twice yearly, I was beginning to forget their names. The customers that hit the hardest for me, that really convinced me it was time to go home, was my bestie’s parents, that I’ve known since the third grade, I couldn’t remember their names that day I saw them walk into the business. I cried all the way home the day I had to resign from my job and give in to my illness.

When this took over my life….. I was a service writer, baker at night, ran a private counseling group online for abused women, mother, stepmother, taxi driver, tutor, and ran the household. Slowly each and everything was taken away from me. The one thing that I begged each doctor and specialist was, “I don’t want drugs, I WANT MY LIFE BACK.”

The MOLD…

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That the darkness brought into my life.

Remember that tornado? Remember the nails it removed from my roof? Well think about that for a minute. Those tiny little nail holes can let in some water over the years. As time progressed, hidden mold began to grow in a wall, that was shared between my garage and bedroom.

Some people in your household can totally be unaffected by things like this, where others will fall down with illness so fast it will make your head spin. That’s me, not that I volunteered for the position, but somehow my susceptibility to neurotoxins is much higher than others in my household.

The science behind my susceptibility is that I’m genetically predisposed to this medical mystery.

Man in protective hazmat suit cleaning mold on the wall illustration

Stachybotrys mold was starting to grow silently hidden without our knowledge. Keep in mind, I had lived nearly 40 years not even knowing I had Mast Cell Activation, but all the signs were there. In fact, it didn’t even have a name until recently. Stachybotrys and aspergillus just happened to be secretly releasing neurotoxins into the air in my home, and no one had a clue this was occurring. It did take two to three years for the accumulation big enough to create a systemic whirlwind of illnesses that made no sense. The battle I was fighting didn’t make sense, but I was begging for my life back one piece at a time, as it was slowly taken from me.

MCAS: Mast Cell Activation Syndrome

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What is this? Allergic to BULLSHIT

“The term “mast cell activation syndrome (MCAS)” is finding increasing use as a diagnosis for individuals who present with signs and symptoms involving the dermis, gastrointestinal track and cardiovascular system; frequently accompanied by neurologic complaints. Such patients often have undergone multiple extensive medical evaluations by different physicians in varied disciplines without a definitive medical diagnosis until the diagnosis of “MCAS” is applied. However, “MCAS” as a distinct clinical entity has not been generally accepted nor do there exist definitive criteria for diagnosis.”[1]

I’m fast forwarding through years of specialists and stories to get you to this point. This is what it is, well sort of. The best way to explain it, is I’m allergic to everything. Essentially, I’m allergic to bullshit, I’m allergic to your bullshit, my bullshit, environmental bullshit… You get the idea.

Best way to describe it, is like this. Today, I want to expose myself to extreme heat, and then work out, by the time I decide to do anything else, take a cold shower (you’re going to get hives) or eat your favorite high histamine meal, or have a margarita, ( be prepped with your epi pen, you may be welcoming anaphylactic shock into your dinner plans) unless you take all the antihistamines necessary to just walk out into the sun.

A basic sunburn makes my face swell and turn me into a sad attempt at looking like Frankenstein. My eyelids, forehead, skin swelled. For the ones who passed 7th grade science…. remember a cell with a nucleus? Remember our skin cells are made up of 7 layers of skin cells? Imagine all 7 layers of cells, swelling like 10x their size. It felt like my skin was a mask on my face, I could do nothing but ingest more antihistamines to get rid of the swelling. ALLERGIC TO A SUNBURN… I think of all the systemic diseases out there, this is the most bullshit illness to deal with. Happiness can easily get sucked OUT OF EVERYTHING you ever experience or have experienced in your life, with one accidental exposure, or spending one extra ounce of energy where it didn’t count that day.

AND IF YOU ARE STRESSED….. just forget about it that day, you might as well stay at home. Each added on additional stressor from that point will shoot you in the foot for days, you’ll wind up in bed anyway, praying to be able to sleep for the following two to three days to recuperate. In fact, sleep is your friend when you have Mast Cell Activation.

Right After the Burn
The Morning After
Swelling Started

[1] Akin, Cem et al. “Mast cell activation syndrome: Proposed diagnostic criteria.” The Journal of allergy and clinical immunology vol. 126,6 (2010): 1099-104.e4. doi:10.1016/j.jaci.2010.08.035

So it begins…

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After that fateful day of the tornado, I did the one thing that NO ONE ever warns anyone about, especially if you are an asthmatic or allergy sufferer. DO NOT GO OUTSIDE (if at all possible) a few days after a tornado, 3 days is safest to be exact. By this time, you probably have realized, that I don’t listen to many safeguarded warnings anyway, so it would have been lost on me. We had gone outside to review the damages from the tornado. That was a BAD idea to say the least.

I ended up with a severe lung infection right after that. I suffered for months, and we were at a weird point in life, where that was the approaching transition of our healthcare system, and we didn’t have healthcare at that point. I literally was suffering some severe sinus/lung infection from the exposure to all the contaminates that were floating around in the air. Now that we are post-pandemic, my realization that I shouldn’t have ever walked out into that air without an N95 at least to filter some of the contamination would have been smart; but no one was thinking about that at the moment. In fact, even with the most recent tragic events of chemical spills, and fires from industrial warehouses, I’m certain there’s still others out there that don’t consider of safeguarding themselves from the exposures with a mask. (We now despise the thought of those things being on our faces again.) My experience is, they should be in your emergency kits for every purpose from now on, especially if you are a fellow “Mast-er” (Mast Cell Activation Sufferer).

This image has an empty alt attribute; its file name is girl-face-mask.webp

When I’m referring to contamination, I’m literally saying anything from mold spores on the ground, to random chemicals in neighboring properties mixed with rusts, and various shreds of building materials are now floating particulates waiting to be inhaled. My lungs CONSUMED it all. This in turn, gave me this crazy infection, and then I start breaking out in hives. Weird rashes would pop up when cold and heat hit my skin, when I took a shower, the water hurt my skin similar to a full body tattoo. I recall looking at my husband one morning and asking him, “Why does the water hurt my skin?” When leaving the house, I had to have every inch of my skin covered, in fear that more welts would appear out of nowhere, I was living a literal nightmare. My go to meds were my albuterol inhalers and it took me a month or so before I broke down and drug my husband and I to an urgent care clinic to get antibiotics. He was sick too, but not the sick that I was, his was a minor sinus infection, congestion.

It was important to share that with you, because not only was I under a “Stress response” type situation, unbeknownst to myself, my mast cell activation syndrome became ACTIVATED.

That’s my wonderful awesome cousin on the left, I’m on the right at the height of my illness. My aunt in the back is pulling bunny ear shenanigans. Love them dearly, some of my biggest supporters, the let me enjoy that weekend although I spent much of it sleeping not being able to communicate. This photo means so much to me, the love I received even though I was a shell of myself.

Tornado! Oh, My!

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Never thought you could ever imagine hearing someone say that the blackness infiltrated their life. If are one of, you probably fondly remember the movie, “Neverending Story” where you will appreciate the allusion. Yet, here I am, telling you that’s simply what had happened. There was a storm blowing in, and the skies were looking so odd, like a weirdness that struck the depths of your soul when you looked out the window. I knew that living out in the countryside, that I had a better opportunity to get a shower now than wait until I had no power for several hours or days. So, I reminded the family of everything they were to do in case of the worst and I headed like an idiot to the shower.

I hope you all have heard the old stories of never taking a shower during a storm, but I had forgone the warning so that I could manage to be clean after several days of neglecting personal hygiene for my families’ schedules. A quick five minutes later, I’m out and drying off, when I hear the train… you actually do audibly HEAR A TRAIN when the tornado is headed your way! (You’ll even feel the rumble in the pit of your stomach.) I peek out the window (another safety tactic they tell you NOT TO DO), because it seemed too quiet, and SO DARK, only to see our 30-foot pine trees from the front of our house, somehow relocate themselves into the neighbor’s backyard, a towel wrapped around my topless body, I’m screaming out the bedroom door at the kids to grab the animals and get downstairs NOW.

After the tornado jumped our house and pulled nails from our roof. 3 days without power

Sitting here now typing this, I have tears in my eyes. You don’t really realize how much your life changes when you go through something like that. The fear, the panic, the loss. Then the relief of it being over, your loved ones are still with you. Feeling blessed you have every single one accounted for. Then the overwhelming grief for the one’s whom you know have experienced this themselves and were not so lucky. It tugs at your heartstrings and makes your stomach do flip flops.

Even though the skies cleared, and everyone was okay, the darkness stayed behind.

Yes, I’m allergic to bullshit.

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If you have found yourself here, you are allergic to the bullshit as well. I’m a mom, an Entrepeneur, a child taxi driver, a Baker, a Manager of life. So far, all I’ve managed about this life is figuring out I have no tolerance for the stupidity and drama of the bullshit that life brings to the table. So, if you’re ready to join me on this journey…. let’s get you started

I’ve chosen some hard roads in life, I’ve survived trauma, I’ve survived abuse, I’ve survived divorce, I’ve survived being a stepmother, and so far, I’m still surviving the remarriage (and happily I might add). Life doesn’t work out the way we like it to, but we have to fight and reach out for the happiness that we want, and you may lose your mind a few million times until you get there, but honey; YOU WILL GET THERE!

So now that you know a little of my backstory, let me introduce you to why I’m here and how I got here. Welcome to my world of mysterious health symptoms and literally losing my mind, almost dying, and coming back from the brink to tell you all my story! I hope that in this blog you will find the ups and downs just as enjoyable as I have and give you hope and love and light along the way.

So grab your coffee or drink of your choice and join me!!! We have shenanigans to get involved in!