Tag systemic illness

“You’re just full of shit.”

SpoonfulofDiva Leave a comment

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.

Another Bottle of Pills on the wall…

SpoonfulofDiva Leave a comment

Another bottle of pills…take one down, pass it around, another prescription to add to them all!

I have a shelf…. that holds EVERY bottle of prescription pills, that followed me everywhere along the way. If you see this shelf, it harbors, the pills, creams, powders, and various elixirs, some of them missing already, that carried me throughout this systemic illness. I don’t use them, some of them are a few years old, but when I was losing my mind, I was trusting that with each symptom, each prescription handed to me, would garner me a glimpse of relief.

Some of those pills did, some did not, and some made me feel like I was going blind, or various other side effects. I’m not saying don’t do what your physicians recommend doing, but remember, I don’t listen, and now I’m hard of hearing (at least in the left ear: never sneeze with a cotton swab in your left ear, you can pop your ear drum, you know that warning label… yeah you get my point)

That my dear is apparently your job, or your care taker’s job. Who has time for that? Well FIND THE DAMN TIME child, your momma isn’t going to do it for you. This was at the point, where I was taking my health into my own hands and REFUSED to let anyone put me in my grave early, or make me leave my kids when they need me the most, without putting up the biggest damn fight of my life. I was supposed to be dead by February of 2022, I’m still here bitches!

You get diagnosed with something like Early Onset Dementia, and literally you are lucky if you have 4 years left. Mind you, I still may have to relinquish to dementia, but dammit…not yet, not right now, I refuse. I am curious about that MRI though, if I have filled the black deficits in my head or not, or if they are getting worse. I do know one thing, this woman right here…. feels better than she has in years, and here I am writing the story to live forever on the interwebs. If you have found me, there is a reason…. stay tuned!!

Marrying your spouse off before you die…

SpoonfulofDiva 1 Comment

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.

MCAS: Mast Cell Activation Syndrome

SpoonfulofDiva Leave a comment

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