Tag illness

Learning about Folate and Cobalamin

SpoonfulofDiva Leave a comment

It’s been several months now, and I’m going to start sharing with you the really awesome part of my life. I’ve not needed prescriptions, and I’m tackling Mast Cell Activation, Fibromyalgia, Interstitial Cystitis, and all the other junk that goes along with these nasty things Naturally. Recently, my friend and I were discussing the importance of Folate (Methylfolate) and Cobalamin (Vit B12).

“Vitamin B12 deficiency is more prevalent in the elderly and can develop as a result of malnutrition, malabsorption, chronic alcoholism, and chronic use of common medications (e.g. metformin, PPI, methotrexate) along with other causes. A wide spectrum of hematological and neuropsychiatric manifestations exist with the most common being Megaloblastic anemia and subacute combined degeneration, respectively. The mechanisms leading to the manifestations specific to these two organ systems are thought to be different. The severity of neuropsychiatric presentation is reported to be inversely proportional to that of hematological presentation, thus making it uncommon for both to be readily apparent simultaneously, ” states the PUBMED website.

What does that mean for us? Cobalamin (Vitamin B12) deficiency can impact many different factors in our lifestyles just from neurological to neuropsychiatric by themselves. Cobalamin is very important when dealing with pain and varying symptoms in Fibromyalgia Syndrome (FS).

“Vitamin B12 (VB) is a necessary vitamin for routine cell activity and metabolism. A deficiency in VB causes symptoms that are also frequently observed in FS, such as weakness, fatigue, general muscle pain, and sleep disturbances. Interestingly, subnormal VB levels may cause these symptoms. Previous studies have reported that FS patients have similar VB levels to healthy individuals. VD deficiency was associated with fatigue and generalized pain. VD deficiency is seen much more often in females than males, and FS is usually seen in females,” states the Sciendo website.

What makes it interesting to know is that Cobalamin deficiency can be caused by medications such as anti-seizure medications, and H2 histamine antagonists. These are medications such as gabapentenoids, and heartburn prevention medications and histamine blockers. These are medications that are regularly taken by Fibromyalgia patients.

“VB deficiency could disrupt methionine synthesis enzyme activity and cause nerve demyelination. Demyelination of the nerves causes a decrease in the pain threshold and general body pain in patients. There is a strong relationship between VB levels and general body pain, and most patients’ pain symptoms may decrease with VB supplementation,” states the Sciendo website.

Knowing that FS also includes a high occurrence of patients that also have small fiber neuropathy and that with a cobalamin (VB) deficiency can cause nerve demyelination makes it blatantly obvious that it can actually contribute to our pain receptor dysfunction.

Folate can be found in leafy green veggies like kale. OldieFan/Pixabay

So along with co-morbid conditions like IBS and various other conditions than can create a malabsorption problem, I started searching out the best way to get the most out of my vitamin supplementation. That was looking at methylated versions of what I was taking. Methylated, Liposomal, and Liquid is to get the most out of your vitamins and ensuring that you are getting what you are taking.

Let’s discuss a little bit about folate, and how this works. Folate works in conjunction with Cobalamin (VB) for energy metabolism, and cell function and repair. What is interesting to know is that folic acid, which was created and added to food sources, does not metabolize correctly and can be stored, to actually block the folate pathways, which can cause a folate deficiency.

“Food fortification and increased vitamin intake have led to higher folic acid (FA) consumption by pregnant women, and some studies have suggested that buildup of unmetabolized folic acid may have negative effects on folate pathways. Recent studies have suggested that unconverted folic acid may affect folate pathways by interfering with folate-dependent enzymes and metabolism. Folate deficiency during pregnancy has been associated with developmental abnormalities such as neural tube defects in the fetus and autism spectrum disorders in children. These disorders can be prevented and treated with high-dose vitamin B9. Folate receptor antibodies are significantly associated with the disruption of brain development in the fetus and function in later life. Folate is actively transported to the fetus, and this transport can be blocked by an antibody against the folate receptor. Folate receptor antibodies are significantly associated with neural tube pregnancy and autism spectrum disorders, and folinic acid treatment in the latter condition has shown improvement in core behavioral deficits along with normalizing the CSF folate status. ,” states the MDPI website.

What is more interesting that if those pathways are now blocked with unused and unprocessed folic acid, we no longer can methylate and do DNA repair. The need to take a methylated version of Folate known as Methylfolate, is the only way to “skip” over the blockage of built-up folic acid so our bodies can get the proper micronutrients. During that methylation process of folate, it uses cobalamin (VB) to help detoxify, methylate, and open back up our pathways for proper DNA repair.

“Folate is a water-soluble B vitamin that plays a critical role in nucleic acid biosynthesis, DNA repair, and methylation. Adequate folate intake is vital for cell division and homeostasis because folate coenzymes play essential roles in nucleic acid synthesis, methionine regeneration, and the shuttling, oxidation, and reduction of one-carbon units required for normal metabolism and regulation. Low folate status is associated with elevated plasma Hcy, which are both risk factors for cardiovascular disease, stroke, megaloblastic anemia, neural tube defects (NTDs; congenital malformation of the fetus), depression, Alzheimer’s disease, and tumors,” states the National Library of Medicine website.

Using methylfolate or (5-MTHF) is the optimal supplementation especially in people that have MTHFR gene mutations.

“5-MTHF has many advantages over folic acid as a supplement. 5-MTHF participates directly in one-carbon metabolism without activation. Thus, 5-MTHF supplements should bypass the limitation of low DHFR activity and the decreased efficiency caused by several common polymorphisms of MTHFR and other enzymes. Unlike folic acid, data suggest that 5-MTHF will not mask vitamin B12 deficiency. 5-MTHF is also more effective than folic acid supplementation in improving folate status. Studies on the safety, tolerability, and retention rates of 5-MTHF/5-MTHF-Ca have suggested that 5-MTHF-Ca is a safe alternative to folic acid as a source of folate and may be particularly advantageous for individuals with MTHFR defects, who could have difficulty processing folic acid from supplements or fortified foods,” states the National Library of Medicine website.

What has been found and published is that B12/Folate can actually benefit Fibromyalgia patients as found in the following study.

“Dose-response relationship and long-lasting effects of B12/folic acid support a true positive response in the studied group of patients with ME/fibromyalgia. It’s important to be alert on co-existing thyroid dysfunction, and we suspect a risk of counteracting interference between B12/folic acid and certain opioid analgesics and other drugs that have to be demethylated as part of their metabolism,” states the Plos One website.

What have I personally experienced? That when I stopped my prescription medications, and I discovered this information. I started Methylfolate and a methylated version of B Complex together, and things have changed drastically for me. Since they are water soluble vitamins, I take them 3 times a day. What my body doesn’t use disposes of them. Knowing that I had already been taking H2 antagonists because of my mast cell activation and different allergic type reactions, I knew that I was already B12 deficient. This didn’t even include the short period of type that I was on gabapentenoids, in all hopes and purposes of stopping the pain. I’m not entirely pain free, but I did notice that my brain fog dissipated, and I felt my arms and legs “tingle” knowing that essentially it started repairing my nerve endings right away.

I may sound like a broken record if you’ve read through my blog, but I’m telling you that I don’t regret it, and I highly suggest you try this first. I also supplement with a methylated Triple Magnesium for optimal muscle health and regeneration along with Vitamin D supplement as well. I’m not the only one either, my mother and sister are in the same boat as me, and we are all improving so greatly. I cannot recommend it enough.

If you found this and read it all the way through. Thank you and congratulations. It’s the first step in your wellness. Always remember, I’m not a doctor, I’m a patient, living this life. I have no affiliation with medical field or the product companies that I use but I am an Amazon Affiliate for the soul purpose of generating a small income if you choose to order from the links provided on the products that I personally use. This is to assist in keeping up the blog, and to give my readers the convenience of finding them quickly. As always, please speak with your primary and pharmacist before adding anything or taking away anything from your regimen. –Wellness Wishes from Your Author!

Methylfolate

Methylated Vitamin B Complex

Triple Magnesium

Vitamin D

ANTIHISTAMINES – Receptor Blocking

SpoonfulofDiva Leave a comment

H1, H2, H3, H4 Receptor Blockers

” Histamine receptors are located throughout the human body and have been classified into categories H1, H2, H3, and H4.Generally speaking, H1 receptors account for neuronal and nervous system sites, H2 are more related to stomach and digestive function, H3 receptors are found in the brain, and H4 are found in organs and bone marrow. Both H1 and H2 receptors are found in airway tissues, skin tissue, and immune cells.” Found on this website — https://www.optimusmedica.com/otc-antihistamines/#:~:text=Histamine%20receptors%20are%20located%20throughout%20the%20human%20body,H4%20are%20found%20in%20organs%20and%20bone%20marrow.

What has worked for me is in immediate flare of a critical reaction, I choose to take a Generation 1 antihistamine which is Diphenhydramine (Benedryl). However, long term use has indicated that it can cause or create dementia/Alzheimer’s or at least exasperates symptoms. I had been using Diphenhydramine for years, because the allergy shots never worked, and I’m allergic to steroids and Prednisone. So I gave that up. I had to do something.

FAMOTIDINE
Cetirizine

Once I verified exactly what symptoms I was suffering from, and then figured out what receptors I needed to block, and what drugs coordinated with the ones I searched up. What worked for me was H1 and H2 blockers, which was Cetirizine (Zyrtec) and Famotidine (Pepcid AC)

Since I already was diagnosed with Fibromyalgia, and Neuropathy (even my feet were killing me and I wasn’t on them) along with my GI tract flaring, I knew that the only way for me to calm down my whole body was to block my H1 receptors and H2 receptors from antihistamine. My skin was reacting as well by the time I was diagnosed. Showers felt like whole body tattoos all at once, even the water hurt my skin like tiny needles. Each person is different, and each person will have different results and responses.

For Immediate Reactions, Like Hives, Dephenhydramine

**Note: I was a guinea pig, and my primary physician was on board. He told me, “a serving suggestion is very literally a suggestion, you can take MORE of a antihistamine than what is suggested, so it took a lot of trying one , and upping the dose. My dosage is 4 times a day. 30 minutes before eating , Morning wake-up, Lunch, Dinner, and then 30 minutes before bed, to account for the histamine dump while I sleep to fight the insomnia and night sweats, when I forget to take them.

**Always check with your primary physician when taking OTC or Prescription medications. They are not pharmacy technicians, but it is important to discuss uses if you are on any other medications as well!**

Feel Free to Join My Journey and Subscribe!!!!

Allergic to Yoga…

SpoonfulofDiva Leave a comment

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.

Learning to Survive

SpoonfulofDiva Leave a comment

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.**

https://ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ss&ref=as_ss_li_til&ad_type=product_link&tracking_id=allergictobs-20&language=en_US&marketplace=amazon&region=US&placement=B0085YPIQE&asins=B0085YPIQE&linkId=a9c174482d57778adf1b14afd1157502&show_border=true&link_opens_in_new_window=true
Green Coffee Extract provides a great source of polyphenols for your brain!! Energy!

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!!

I still don’t listen…

SpoonfulofDiva 1 Comment

(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…

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.

Symptoms…

SpoonfulofDiva Leave a comment

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.”