Tag chronic illness

“Mom, bury me with my butt in the air, so everyone can slap me on the way out.”

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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.

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Air Fryer, Netflix, Prime Video, and TikTok Ads

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The daily grind of having chronic illness.

One day, my caretaker brought home an air fryer and changed our world forever. In the middle of my illness, I had all but quit cooking, and left it up for everyone to pretty much fend for themselves or my husband to cook when they got home. This neat little invention gave my family a new lease on life, as I resigned to my illness sitting on the couch either scrolling aimlessly through Tik Tok, or watching movies on Prime Video or Netflix.

In our home, we didn’t fry food often, if ever. Long ago, I had figured out that fried foods didn’t agree with me all that well, and for obvious reasons, I sure didn’t want to clog the arteries of my loved ones. Insert the air fryer, and our world was changed. We have upgraded to two different air fryers since the original one mind you. We literally have to have one to feed at least a family of four at any given time. We opted for a pretty awesome one, that we refer to as a “hobby oven” because it will do pizzas and various other things, rather than just air fry, it’s also a rotisserie as well.

CORSORI Air Fryer and Toaster Oven!

Anyway, I laid around a lot on that couch with hardly any energy to move, let alone enough energy to function my brain to even think about cooking. Everyone in the house was near adult age, or already adult in age, so it just made sense to make things a little easier than firing up the 6 cubic square foot oven all the time for some simple small meals or snacks.

I was actually pretty lucky to watch the transition of programming on our popular Netflix and its demise in my husband and I’s opinion. The offerings started to get smaller and less interesting to watch. So, when this latest billing fiasco came to light, it didn’t hurt my feelings much to just cancel it. For our family, it just wasn’t worth all the hype, when we can find programming for less, and after all, we already have a prime membership, why not entertain and use our Prime Video just a little bit more?

My soul purpose was to lay on that couch, and hope for the energy to get off that couch. I would crochet until my hands hurt, nap until I felt like I couldn’t nap anymore, and wait for someone to bring me food from the awesome air fryer. That was my life for several months. It wasn’t the best, but it was all I could hope for. If I woke up “above the dirt”, I was one step closer to not losing everything just yet. I am so very grateful for that.

I found myself writing notes and hoarding note pads in various places as well, so as I continue to write the book, you’re going to witness all the things I had to go through, by my notes. My caretakers and family fill me in with the rest of the information because, for a solid two years, I can honestly say, my brain did not have any ability to retain information. Swear on whatever is Holy that I have lost those years, and I may never get anyone’s birthday or ages correct ever again.

I’m the guinea pig…

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My venture into being my own lab rat…

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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.

This shit is really bananas…

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The banana story…

To know me, is to know the banana story. I am a survivor of a lot of things, child abuse (not at the hands of my immediate family at home), I am also a survivor of domestic abuse as an adult, on more than one occasion. Emotional, physical, you name it, and I’m also a survivor of bananas.

I never wanted to disappoint my family as a child, it was of the utmost importance at this tender age of like 4 or 5 that I never disappoint. One morning having breakfast with my dad, he’s cutting up a ripe golden banana to go on his cereal and decides that he is going to share the other half of his banana with me. After all, we had figured out for some mythical reason, I had NEVER had a physical banana until this age, I have had baby food, banana candy, banana flavored pudding, but not an actual banana.

So, I start chewing up the banana. He asked me if I liked it, and I nodded my head, he told me to, “Hurry up and finish.” so we could retire to the garage, so I could color and he could work on his racecar. I crammed the rest of the banana in my mouth, grabbed my crayons and coloring book and headed out the door. Again, like I said, to know me, you have to know the banana story, because it was the QUIETEST, I have ever been in my entire life, until I started being swallowed up by my demented bliss in my 40s.

Vividly I remember, that day I had chosen to color a lion’s mane in my coloring book rainbow in color. Bible study we had learned about the coat of many colors. I especially loved Dolly Parton when she sung her song about said coat. So the rainbow mane was born that day. I’ve always been a fan of rainbows and Rainbow Brite and Strawberry Shortcake, that will explain my hair colors that change with my every whim. I wanted to have all the colors, all the time.

I sat there, with that banana in my mouth, gagging, my mouth filling with spit. I tried to swallow several times, only to find the gagging made my eyes water, and then I couldn’t color. I don’t know how I felt a comfortable point, but for FOUR ENTIRE HOURS, I held that banana in my mouth, as my dad hastened on with his work. Until it hit him, he came over to check on me, “Misty, are you okay?” I nod my head, “Are you sure? You haven’t said a word for hours.” Again I nodded, then gagged. “Open your mouth. What is in your mouth.” To which my eyes welled up with tears as I start gagging as I stick out my tongue full of mashed bananas. “Spit it out for pete’s sake child!”

You will never learn patience, or the importance of communication, unless you have held a banana in your mouth for four hours. Trust me, at a very tender age, I learned it was even more important to be able to communicate your needs and the needs of others that day, and a great deal of patience on being rescued in a most dire situation.

As you can see, because of bananas, I had the patience to stick to my guns with my illness, and continue to fight every step of the way, even in darkest moments of me not being able to communicate very well. Even though I’m not really allergic to bananas (it’s just a texture violation), I will whole heartedly tell you I am. I even tried to eat bananas while pregnant, ripe, green, it didn’t matter… it’s instant nausea to me. However, I can make a badass banana cake, banana muffins, banana bread….just not consume a raw banana.

“You’re just full of shit.”

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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.

Allergic to Yoga…

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If you ever wanted an excuse to be allergic to exercise, Mast Cell Activation Syndrome and Fibromyalgia are your friends.

Desperate for answers I employed a friend to follow me to this giant diagnostic hospital for answers. My family physician thought it would be time for me to visit a Rheumatologist. Considering the options that I was running out of, I opted for the closest facility.

Neat fact, I should have opted to be dumped at the front door, because just getting to where we needed to be in that building I wanted to curl up in a ball and die. I do have to say, my friend opted to get me a wheelchair, but I’m a little stubborn about resorting to that when my legs aren’t broken, they just hurt ALOT. By the time we got to the waiting area, I have nothing left in my reserves, exertion of any sort would make me sleep for days. I wanted to cut off my feet they hurt so bad. When I would get overheated, I couldn’t breathe, I’d break out in a weird rash, sweats, EVERYTHING on my body HURT. I was lucky if I wasn’t having Parkinson’s like tremoring, and walking with all the physical pain on top of the random neurological symptoms was HARD. I was 40 at this time, (before my actual dementia diagnosis I believe) and I’m hunched over with a dementia type gait, because my nervous system has had ENOUGH, I’m shuffling around like I’m 80-90 yrs. old like I’d lived my best life already, I’m just getting started!

I got to visit the doctor along with my huge 4″ binder file that was forwarded to them before I even attended the facility. I was sent for random testing, then the Rheumatologist walks in starts poking me, and talking with me, and EVERYTHING she touched hurt. Oh…you have Fibromyalgia. Oh great, I thought to myself. This doctor quickly leaves the room and informs me I’m to see another person at another facility in an hour. “ANOTHER DIAGNOSIS, that people think is a load of total nonsense”, I thought to myself. (I only had a few believers in my small circle of loved ones that I was even ill at all.) I used to be one of those people that didn’t believe Fibromyalgia was a thing. In a few short minutes I was ever so sorry for EVER thinking that way, because when you look at people with chronic illness, sometimes YOU HAVE NO IDEA there’s anything wrong, and now I WAS ONE OF THOSE PATIENTS, talk about eating a HUGE PIECE OF HUMBLE PIE.

Clarification is needed at this moment in time. Apparently when your brain shrinks and you start to have pain issues like I have, your brain is the central (computer) of your nervous system. It runs all of the things, including the nervous system that is all those tiny wires that go all the way to your fingertips, toes, and in your skin. Well, when they get mad…. you’re just done. Just sleep is what my neurologist had told me. The only thing that will make it calm down is to hit the reset button on your personal computer (brain) so it’s time you sleep. Let me tell you, SLEEP was my OTHER hobby already, but the guy isn’t lying. (Note: When I mean sleep, I was taking naps throughout the day, because I had some insane insomnia at night, I was not actually getting a full 8 hours of restful sleep a night and that IS WAY MORE IMPORTANT than napping.) Later on, I would figure out that sleep is a big deal when you are basically experiencing neurological pain and neuroinflammatory processes, but I wouldn’t learn that for a long time later.

Back to the whole big diagnostic hospital event…. they sent me to see the actual REAL NURSE RATCHED in the flesh. At least that’s what my friend and I named her. I sat in front of this woman, as she spoke down to me like I WAS SEEKING MEDS. I had already told her my journey, and shared with her I WAS ALLERGIC to all said NARCOTICS, and ALL I WANT IS MY LIFE BACK, and explained to her, that I NEVER SIT STILL until I got sick. I WANT MY LIFE BACK without the drugs! This woman for real, asked me straight up, “Have you tried YOGA?!” I don’t remember the colorful things that followed but I did sum it up, we are wasting each other’s time and left. I WAS SO ALLERGIC TO HER JABBER, I just wanted to go home.

“People with fibromyalgia experienced significant pain and fatigue in the exercising muscle during recovery from low-intensity and short-duration resistance exercise, with greater pain during concentric contractions.” states the PubMed website.

https://pubmed.ncbi.nlm.nih.gov/37384640/

Observational Study posted about Localized Pain and Fatigue During Recovery From Submaximal Resistance Exercise in People With Fibromyalgia

The stress just made me hurt worse, and I was over the day, and so was my friend to be honest. Obviously, that physician isn’t aware that Mast Cell Activation Syndrome makes you ALLERGIC to exercise and physical exertion. (Little did I know that basically, Fibromyalgia gave you the same symptoms after exertion too.) I guess I feel as though our medical system is flawed because when new illnesses are identified there should be some type of education about it, and there is. Some people receive it, others do not, that goes for both patients and physicians; there’s a disconnect. However, it’s the free will of the physicians you employ on whether or not they choose to continue to educate themselves and indulge in educating you in the illnesses you are diagnosed with. In this particular experience, I received a diagnosis with no education, then sent to Nurse Ratched to ask me if I had tried yoga, with no backstory or education as to why I needed it, or the benefits to it and the diagnosis I had just received a few hours before. I was confused, tired, angry, and in excruciating pain, just to make the trip and the walk into these facilities to see these people.

Remember, physicians can be hired and fired too, and you can get second opinions. Just because you have seen one doesn’t always mean you take their word as the written word of some saint in a book like the Bible. Trust your instincts and will to live!

Looking back on this experience, it was the start of when I began educating myself. In hindsight, I just got so mad that I still knew nothing when I left. Indirectly, it sent me into a domino effect of healing. First, I started reading, that was neurological stimulation even if I read only one paragraph a day, if you know, you know that brain fog is no joke. This in turn exercised my brain just enough to remain in the real world long enough to continue to strive for another few paragraphs the next day, until I was reading solidly again. Second, I did figure out that any type of exercise is better than no exercise, whether its walking in a pool, doing a sauna, just light stretching, or yoga, or simply going grocery shopping it stimulates oxygen in the brain and that was particularly important for my central nervous system. Do I exercise? NO, but I did force myself to remain as active as my body would allow, and even now I still overdo it, and have to sleep for a day or two. Has the pain improved? Absolutely! It doesn’t happen overnight, but out of pure stubbornness you got to start somewhere, right? I did.

Another Bottle of Pills on the wall…

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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…

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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.