Tag Motherhood

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

SpoonfulofDiva 1 Comment

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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Learning to Survive

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The hardest part of living with chronic illnesses is learning to survive it.

These photos are about a month apart in 2019. On the right you can actually see I still had purple in my hair, but as you can also see, there’s significant swelling in my face. Not to mention my eyelids, chronic inflammation is no joke, but it occurs.

Dark circles are a thing that I now live with as well, and “Painting on my Personality” is the phrase I use now, because most of my eyebrows fell out (or turned white), even my eyelashes would follow suit a few times. Lucky for me though, I had a few beard hairs show up as well, three more in fact. Insert my dad into pointing out that I had a beard hair under my chin that I never knew I had at 16, while we are hanging out with my boyfriend out of town at an electronics store. If you want to really torture your teen, do that, thanks Dad. Ha Ha! So, for everyone’s enjoyment in understanding my facial expressions, I do have to reapply my eyebrows when venturing out into public.

Learning to survive was hard though, not the superficial stuff. It was the depression. The never-ending list of growing symptoms. I even had to reach out to a friend for inspiration in how I just didn’t throw in the towel entirely. Their advice, “Find a hobby, keep yourself busy, and find God.” This time, I WANTED TO LISTEN, BECAUSE I WANTED TO LIVE.

I picked up a crochet hook and FORCED myself to crochet and learn to. If I couldn’t speak, and my hands couldn’t make cake, I kept telling myself I would FORCE my tremoring hands to do physical therapy of rebuilding dexterity by crocheting for something to do. I obsessively crochet and still do when it strikes my fancy. Simply teaching myself a pattern and do it long enough so that my hands gained muscle memory was just what I needed.

Then I began to change my outlook and approach as I accomplished just one simple project at a time. As I obsessively crocheted, I told myself, “If you can do this, it’s time that we approach your meds and life differently.” I began to change my mindset, just by simply crocheting a few scarves.

By 2019 my list of diagnosis went like this: Early Onset Dementia, Interstitial Cystitis of the Bladder, PCOS, Endometriosis, Fibroids (Although, I did have to dispose of all those unnecessary female parts in 2018 because my Uterus had grown 7 times the size that caused the permanent damage to my bladder), Chronic Inflammatory Response, Edema, High Blood Pressure, Fatty Liver, High Cholesterol, Fibromyalgia, Paresthesia of my Veins and Carotid Arteries, Tremors, Seizures, Osteoarthritis **There may be a few more that I had forgotten.**

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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!

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.

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

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!