Author SpoonfulofDiva

Interstitial Cystitis: Sex & Stuff

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More information you probably didn’t want to know, but if you found this page, you suffer, and I understand.

For most IC sufferers, it becomes not only painful to urinate, but painful to have sexy time. No one wants the once enjoyable, to become not enjoyable anymore. There are a few things that have helped me. Since I am also a Mast Cell Activation sufferer, and allergic to most meds, and narcotics, I have had to do things naturally, find out what works, and go from there.

**Note: I have attached links to the images and titles on this page to direct link you to Amazon for your convenience. If you choose to order.

CHRONIC PAIN

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Chronic pain has been the hardest thing to beat for me. I also have Fibromyalgia, and Neuropathy. I can feel EVERYTHING, and it is multiplied almost ten times by what my neurologist has tested me to be. I’ve been very fortunate to learn that RUTIN and NARIGIN can actually assist in Neurogenesis and actually help with depression-like symptoms. Always feed your brain and neurological system first. Assist them in any way you can. Most of us with systemic illnesses suffer so much that we NEED the pick me up. Being slowly tortured never helped anyone.

I highly recommend that you invest in your Nervous System, and your brain, in feeding it the bioflavonoids it needs to combat the depression, and repair inflammation in your nervous system as well!

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WHAT ARE THE WHITE FLAKES IN MY URINE?

To the best of my knowledge, and what was explained to me by my own gynecologist, that is pieces of debris, normally shedding of the lining from your bladder walls. IC, is best described as we lose elasticity in the bladder wall, it shrinks, and then when it expands it tears the inner lining. We don’t reabsorb it, so it has to be expelled. ALWAYS make note that anything out of the ordinary, like physical signs of blood, odor, or discharge be communicated to your doctor promptly!

SEXY TIME – TURN Pain into Pleasure

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Tips are stop using any artificial lubricants, those can quickly irritate your urethra and other parts. Essentially you have a bladder that is raw open wound, you do not want to rub salt, preservatives, or anything on an open wound on your body, so don’t do it to your bladder. Use a natural lubricant, before, during, and reapply after intercourse. Make it a standard practice, and ultimately you benefit. There are many natural lubricants, but the best effective ones are ALOE BASED. GOOD CLEAN LOVE has a pleasant smell, and works well. **Remember to diligently both men and women to empty your bladders after any intercourse during clean up.

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Suppository Reusable Mold Kit

Aloe Based Lubricants can also be mixed with Coconut Oil and frozen to make a suppository, which is widely recommended by patients. It helps with burning as well as itching. Aloe is naturally antibacterial and antifungal. Which, how lucky are we, that cold pressed coconut oil is as well! These are tried and true practices that most IC sufferers have been doing for years. With anything new, always check with your primary physician before you start or if it will work well for you!

ELVIE ** THE DIGITAL PELVIC FLOOR TRAINER

Feel free to read my other blog post about IC: https://allergictoyourbullshit.com/2023/03/14/heartburn-from-hell/

Feeding the Brain, Stabilizing MCAS

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Why the brain is necessary for all of us to function.

For me, today is a day of remembrance. In the past 30 days, I have now attended a memorial and funeral for two parents of different childhood friends, who lost their ability to remember. Alzheimer’s and Dementia have touched so many lives especially people and families that are important to me.

Rutin

In retrospect it’s been almost a blessing that I suffered an illness that gave me a glimpse into my future with dementia, along with the experiences with my own family members that I had already lost. I was able to provide much needed wisdom when asked on how to navigate some of the “humane” matters with others who were already ill around me.

Until I see the MRI for myself in the near future, I am not going to glorify that the black spaces are now miraculously filled with brain matter for myself. I also will never claim a miraculous cure for anything. I do fully expect to lose my life eventually to dementia, but in the meantime, I’m going to live my life to the fullest and continue to educate myself and others as I find supplements to assist me in healing and functioning.

Famotidine

When researching an illness, I research how the brain operates or dysfunctions to cause said illness. Interstitial Cystitis is an actual physical dysfunction of an organ; however, the brain operates histamine reactions and releases that activate and deactivate my Mast Cell Activation Syndrome. In fact, almost ALL of my illnesses with the exception of the interstitial cystitis all tie into the brain in some way. Mast Cell Activation Syndrome, Neuropathy, Fibromyalgia, and obviously Dementia.

Cetirizine

A little survey and digging in the Mast Cell patient group I participate in, and I sat one day and wrote down a list of 240 various different illnesses on the list (when someone polled our group on the various diagnoses’ we all had, including arthritis, and they all tie back into the brain. When I discovered that, I knew then, I had to start safeguarding my mainframe, as soon as possible, and with fierceness.

This turned me onto a host of different things that I needed to address. Cognitive Function was certainly one, and regaining my control of my memory and recovery of lost memory was another. Then regaining my energy, and focus. I found a few supplements that I simply “tried” to see if it did anything for me. The benefits had to be WORTH it, and the side effects had to be nothing or very limited for myself.

I took some of these for a few months, and started making HUGE gains, then I did the worst thing I could do, and stopped the supplements. Why you ask… because I’m the guinea pig, I’m my own test subject, and what I found was I began to degrade as quickly as I had started making improvements. In September of 2022 I stopped the supplements, and by December, I had a host of symptoms begun again, like the ADHD, the ability to not be able to clearly think, the litany of aches and pains, on top of forgetting my daily schedules. I finally admitted to my therapist what I had done at that time, and she said that it was “Invaluable” information to include in my research, but highly suggested that I begin them again. I really didn’t need them to tell me to, because that morning before I admitted to myself defeat, I may have to permanently keep myself on the Amazon Subscribe & Save program for these pills. However, I am COMPLETELY 100% totally okay with these results, it is a far car better than a ton of prescriptions from the doctors to mitigate symptoms, multiple doctor visits, and ER visits for allergic reactions and mania, or health anxiety.

Forskohlii

My last appointment was this past Thursday, and after yet another introduction of the polyphenol Green Coffee Extract, gave me everything that I needed. Her response was to me, “You are oddly more normal, calm, controlled.” I chimed in, “I can also use BIG WORDS again!” We giggled together on that one. One day, I may ask her to actually write me an excerpt about watching my decline and then my regrowth, it’d be interesting to get it from her perspective.

My journey has been slow in progress because I am researching, and I am my own test subject, and I suggest that you do the same, research, and trust your body. You know your body best.

What has gotten me to this progress so far has been the following regimen:

RUTIN , FORSKOHLII and my H1 histamine blocker Cetirizine 10 mg along with my H2 Histamine blocker Famotidine 20mg

Now each person is different, and only respond to certain antihistamines, to find balance, sometimes you need to take more than one of each antihistamine. My balance stopped at 4 times a day, half an hour before I ingest any food, breakfast, lunch and dinner, and before bedtime. My antihistamine intake is 2 Cetirizine and 3 Famotidine every time I take a “dose”. That is what keeps me from reacting to foods, bug bites, and various other things that my mast cells deem too much histamine for the day, oh and the biggest “histamine release” is when we get sleepy and go to sleep, that is the necessity for taking them at night.

**I recommend you take a look at my blog post about Antihistamines. Take notes on your major symptoms, and start with looking at what receptor blockers are going to get rid of those reactions first.** As always, check with your physician if you are on anything. I’m not a licensed physician, this is just what got me to where I am at.

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Self-Care

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Taking care of you, even when you are going losing your mind.

It’s very important that a person take care of themselves. Approximately 50 years ago, self-care was basically referred to as your personal hygiene. When you talk to our current elders, they are thinking, “Good, they still know how to brush their teeth, take a shower.” Inevitably, the word leaves them perplexed. The meaning of self-care has really evolved into something entirely different in the days of technology and constant input. For your health and well-being, and sanity, it’s highly important to focus on self-care periodically, if not, DAILY.

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My best suggestion to keep stress down is to start small. Therapists are available to us to help, FIND ONE! Your loved ones are going to eventually grow sick of you complaining, I’ve seen it countless times in the groups that I participate in. It is inevitable, so find someone you can complain to, and talk about your pain. In my experience, even my doctors who were confused about my condition were just as weary about my complaining than others around me. I’m ever so grateful to have found a therapist to follow me through my health journey.

Take a Bath, Pamper yourself, Give yourself a facial, whatever you need to do!!!!

Cereal Scented Candles

Next, try to do something simple like UNPLUG yourself from your phone, from all of the things around you, and just put yourself in TIME OUT. If that needs to be a nap, then take it. Naps are fabulous in giving you a reset at the height of pain. As I have even told one of my children, even when no one understands you have high anxiety, or need to be alone, just tell them you have a MIGRAINE, everyone understands you need that dark quiet room to go lay down in just to re-center, no other explanation needed.

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Or read a book! Something that is all your own, doing things for your sanity, and your calmness is important, to lower stress and cortisol levels and hormone responses. All of this is healthy behaviors for your brain!

If Books still aren’t your thing, then set aside time, just enough to listen to your favorite podcast, or catch a show that you have been missing out on while you are in your own space, on your own time. Don’t tell me there’s no time, I know you waste a great deal of minutes watching reels on various social media platforms, when you literally could be spending that time on yourself.

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My favorite part of all of these choices is the Naps. Like today, my ears started to burn, my blood pressure was a teeny bit too high for my liking (and for no reason at all other than my bladder has been a little irritated lately), so after dinner, I took a nap. It has become so common place, that now, no one comes looking for me when I disappear. Don’t bother momma if she says no words and disappears. (Trust me, it wasn’t always like that when the children were younger, but with due diligence, you can train yourself to take the time out for yourself and train your family as well.)

After all, if the kids get a nap, and your partner gets to “wind down” from the day, you better darn well put yourself on that list of needing your “wind down” time as well, and it better be put on some form of schedule, so EVERYONE knows, that’s your time!

kinder Fluff Baby Pillow: Hypoallergenic & lump free

Heartburn from Hell… Interstitial Cystitis

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The Disease that 30% of population may have and don’t even know it.

Discovering I had Interstitial Cystitis of the Bladder was truly an eye opener for me. It encouraged me to research, when I had the patience to read (this is a thing, especially when you are critical pain). The craziest part is there is NO TRUE DIAGNOSTIC TESTING for the disease, no known “cause” for said issues, but a multitude of symptoms. OHHHH THE HEARTBURN WAS FIERCE!

Mine was diagnosed by imaging when my gyno was all up in my junk. He took pictures, I mean, we are already there, have a handy camera, and from the outside he said it looked ANGRY, so he took some pictures from the inside. It looked like Freddy Kreuger’s face on a good day. Anyway, I’ll spare you the lunch you ate today or yesterday, and just say, it was REALLY RED and very swollen.

There is research that indicates something to the effect of our tissues losing elasticity as we age that may also cause such a condition. I can buy that as well. I highly recommend you take your Collagen! After all, Collagen is great for your joints and arthritic pain, and for the ladies we enjoy the benefits for hair and nails as well.

Collagen

In real time Interstitial Cystitis, makes you feel like you have a urinary tract infection, like you have to pee ALL THE TIME, and nothing really comes out, because you constantly feel urgency. Then you dribble a little because you lose functionality when it takes over your bladder, so you got to protect yourself from weeing yourself. Most moms do anyway, those damn sneezes will send you packing your bag to the bathroom to change an entire set of clothes sometimes. Your bladder tissues get agitated, swell up, and tear the inner lining, so it’s very much like rubbing salt in your wound every single time you consume food or drink. If you are immunocompromised, have Mast Cell Activation or severe allergies, pray that you are not eating HIGH histamine foods or citric acid or night shades like bell peppers and tomatoes, there is no hell like a citric acid hitting your shredded raw bladder that I can compare it to.

Let’s get to the HEARTBURN that not even the OTC or prescription medication will touch. There are a few modern drugs on the market right now, neither did much to outweigh the need to stay on them and risk the side effects with all the other medications I was on. Insert my researching how to help myself. This pain is like no other, I couldn’t eat food! I literally would eat at like 3 p.m. in the afternoon and not be able to eat until 3 p.m. the following day because it felt like I had gastroparesis (where food doesn’t go down when it’s supposed to). The food felt like it was still sitting in my esophagus, along with ALL THE ACID. Certainly, it was going to eat a hole in my esophagus at some point.

Desperate, does not begin to describe where I was at this point. Then they hand you a list of foods you can’t eat which is basically everything in our dietary structure today in this world. Telling you to eat all organic food but nothing acidic and the list goes on and on. The one thing that got me the most is there are people who have to go into a Urinary Care Specialist and have Valium or various other pain killing medicines inserted into your bladder with loads of fluid to stretch your bladder to make it stretchy again.

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I have Mast Cell Activation, I’m allergic to steroids and narcotics, and oh to boot, your insurance won’t cover a $6K procedure like that every three months. So Good Luck! I’m stubborn, I don’t listen, and I’m frugal…so I decided I could stretch my bladder on my own, after all my body naturally fills it with fluid every second of everyday, so anyone can stretch their own bladder. We can hold out the urgency and suck up the pain and go on a schedule every 2 to 3 hours, if you can hold it just a little bit longer, even better! So that’s the first thing that I did.

Yes, yes, I know, we heard this from our parents when they potty trained us, that it was not a great idea or “healthy” to hold it. I highly recommend if you do this method, you invest in those incontinence pad, panty liners, something to protect you from leaking. My determination of forcing myself onto a schedule has saved me thousands, and when I went to see the Urologist, he told me that I was in much better shape than most of his patients and to keep doing what I was doing.

The pain was a whole other level I still had to cope with. This was harder to tackle. I’m grateful however that my gyno at the time suggested to treat it like an allergic reaction to everything I consume. So that’s just what I did, insert ANTIHISTAMINES. Did you know there are 4 types of antihistamines? As long as you are taking at least and H1 and H2 antihistamine blocker daily, you are protected!

My go to H 1 antihistamine receptor blocker and H 2 antihistamine receptor blocker. Essentially, what saved me was Cetirizine, and Loratadine. With antihistamines I actually have to take 2 Cetirizine, and 3 Famotidine a day, 3 times a day. It will be how I live from now on. I also coupled it with a few more supplements suggested from the group of Mast Cell Patients had suggested work, and that were Aloe Vera Gel Capsules, and Horsetail Grass Capsules. Since 2019, I’ve purchased both of those products 8 times. I have been in a flare up at least 8 times since 2019, and it’s 2023 now. For the most part, I don’t have to take the Aloe or Horsetail unless I’m in a flare up, and when I do, I instantly start taking them three times a day, at the serving suggests on the bottle.

The Bonus to all of that, is the H1 and H2 antihistamines were literally helping my Mast Cell Activation as well, without my knowledge. I take the antihistamines even after a flare daily, that’s why the bottles that I linked here in the blog come with so many. After all, I consume so many antihistamines it seems like it’d be impossible for me to stay awake. On the contrary, I have no problem with that, since I discovered Green Coffee Extract, great polyphenols for my brain, with no jitters or crash. I can’t heart emoji that one enough.

There are two things that I have to avoid at all costs to make sure that I do not have an instant flare up. That is Carbonated Soda of any kind. I have to let the carbonation die down and drink a flat soda, it’s just easier to avoid it. The other is my first love, HOT BREWED COFFEE, Cold brew is safe. Hot brewed releases the oils in the bean, along with the histamine and mold in the bean, so instant histamine reaction. When I started the antihistamines, I was drinking a substantial amount of coffee, so I had to do something!

Anyone who suffers from severe heartburn that nothing seems to touch, male or female, I hope this may help you cure the insane pain that you suffer!

Fizzy juice that melts fat

Glucotrust
Best Fiends, great puzzle games to keep your mind occupied!

“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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Pissing my Pants Laughing

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A NEW DEVICE to add Amusement to our days! Muscle Pain Relief for Fibromyalgia!

I woke up with a migraine yesterday. This is a normal thing that happens occasionally, and when I first started seeing a neurologist, he asked me if I had experienced dramatic migraines. When in fact, I hadn’t as frequently as he said I should have by the point, and condition that my brain was in. I do however wake up with the sinus headaches, and then the muscle tension migraines.

Yesterday, happened to be one of those muscle tension migraines that literally had every muscle in my shoulders tensed up that sent pain shooting into my neck and brain. I was in dire straits, that I was desperate enough to call and recruit my mom to accompany me to the massage parlor (I affectionately refer to them as “happy ending places”) to get the kinks worked out. My downfall, she had already seen her chiropractor the day before, but she texts me back with, “I’ll be there in a few minutes.” Wouldn’t you know it she showed up with this neat little device.

I’m telling you, while this thing is marked down, you literally just need to buy it, even if it’s for comedy relief. This little device, the Cervical Vertebra Massager rocked my world, and let me tell you how.

Insert a knock at my door, my mother coming to my rescue, telling me this is the best thing since sliced bread, it will save me from the pain I was enduring. This was one of those all my shoulder and back muscles were so cramped that any pain had to be better than the pain that I was enduring and pulling on all the headache muscles in my brain. I was down for anything.

CERVICAL VERTEBRA MASSAGER WITH USB CHARGER!

She pulls out this little sticky patch with “electrodes” and then snaps this cervical device that can be recharged by USB, and slaps that puppy on my back right across the base of my neck. Now we aren’t doctors, but I’m going to tell you, we don’t play around when it comes to this kind of pain, we go to the ROOT of the problem always. She hits a button and asks, “You feel that?” “Nope, nothing.” I reply. She hits a button again and says, “how about that?” I said, “Nada.” She hits a button again and as I’m proceeding to say, “Is it on?” a jolt of electricity buckles me over, throws me forward and pops my neck in an instant, as I scream a slew of profanities, crossing my legs and praying I don’t pee all over the floor.

“What the hell you put on me, that hurts worse, than a dog shock collar!” as I am screaming, laughing, and trying not to pee myself. It’s pulsating the electricity through my muscles with fierceness. With laughter and tears in her eyes, “I’m sorry, I didn’t mean to turn it on that setting! Do you want me to shut it off? Oh my God!” as we continue to laugh until we are crying. “No, No, I’ll be fine, just leave it on, the worst is over.” The laughter continued.

I vaguely remember accusing her of damn well knowing what it would do, and that she should have videoed that mess to which we laughed some more. I’m pretty sure that if I had an Echo Show with Multiple Camera Views set up I am telling you though, that was probably the most relief I have felt from Fibromyalgia and Neuropathy pain in years. After removing the device and 12 minutes of therapy, I suggest you apply some Lidocaine of some-sort to the area, just to relieve residual pain, especially with neuropathy, so your skin doesn’t hurt. Icy Hot is a good resolve to that dilema.

View Many Cameras at Once With Echo Show!

Later that night, as my husband was arriving home and I was collecting the box from the counter I received a text from my mom. “Warning, Do not use it as a torture device!!!! LOL” My reply, “LMAO how’d you know? David just got home!” She just KNEW that I was going to torture my husband just for giggles. Little did I know, the joke would be on myself AGAIN before the end of the night.

Fast forward after I showed my husband the power of said device, that I had to charge it. Then I applied it to my right shoulder that was still acting up just a tad bit. Turned it on, but when the patch that I applied to my skin that holds the device in place came up a little, I reached back to readjust while the device was on, and my finger got stuck on the pad electrode, and I was grounded in a complete circle, so my arm was flexing glued to the pad, sending and electrode from my shoulder to my fingertips and back through, leaving me screaming, “Help, Help, Help me David, shut it off!”

I highly advise, never use this device without an extra pair of hands handy to shut off that button in places you can’t reach. If you need new sticky patches, you can order those too! I’m telling you, I’m the test subject here, and if it’s working for my mom, and myself, as long as you have assistance during use. You got to have this in your artillery. My hubby also pointed out, this thing is powerful enough, if you were brave enough to apply it to your abdomen, it’d probably give you a heller ab workout as well, but that’s not what it’s made for.

***NOTE: There are two versions to this Massager, the battery operated and the USB charged one. Battery operated has less jolt and less power to it, however, USB charging is what my mom used on me. We have both, so for a tame less shocking experience I suggest battery operated, but for those massive muscle cramps, only USB will do for DEEP TISSUE massage.

The Easter Egg Hunt for Healing!

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Looking for the answers on how to heal.

Swinging an Easter basket in one hand wearing her new yellow frilly dress, and black shiny patent leather shoes running through the tufts of thick green grass, searching frantically for colorful candy filled plastic easter eggs, that was me. Each egg found would come with candy, money, or a prize, and never left a recipient in disappointment with each brightly colored find. Family who hid the eggs would even get devious, sometimes you had to search high and low, even though I was a shorter version of most humans. Easter was so much fun! I also learned an invaluable lesson from Easter Egg hunts. Never leave any stone unturned, check every nook and cranny, even check the gutters and trashcans.

Plastic Easter Eggs
Easter Baskets for Adults & Children

My search for knowledge, sincerely comes from what I learned Easter Egg Hunting, and I implore you and our younger generations to do the same. When it comes to your health, when it comes to life, or anything that you need to gain knowledge for or from. One valuable piece of wisdom my father imparted on me as a child was, “No matter what the situation, your EDUCATION can never be taken from you. No one, the only one that can deny you EDUCATION is yourself.” I’ve carried that with me forever, and I share that sentiment with any human being I can.

My search for knowledge about my health, started at home. Gutters were first, I started looking at my bowels. What I was consuming and what was coming out are VERY important. Then, I began to search higher. Once I knew I wasn’t poisoning myself, to the best of my knowledge, I got online and started Googling. The one thing everyone tells you not to do, but remember, I don’t listen. I was looking for answers on how to heal my brain, and how to thwart my Mast Cell reactions and all the histamine my body was producing. I needed to do something and pronto.

I know what you are saying to yourself, “Why didn’t she go to an allergist?” Funny story, I did that too. I was allergic to practically everything, and then I was allergic to the steroids that was supposed to counteract the reactions to the shots. I went in more miserable than when I came out. It wasn’t working, or worth the misery I was putting myself through. All the allergist wanted to do was keep giving me the shots, even that doctor didn’t really look into WHY my body seemed to react to EVERYTHING. I fired that doctor too.

My tunnel of light was closing quickly, it’s hard to explain. In a sense, I knew I was losing my thought processing ability, I was in fight or flight mode, just trying out how to figure things out, to save my life. (This also raises histamine levels, cortisol levels, and sends you into a stress histamine response as well. With each waking day, I knew I was step closer to losing my grip on reality.) At one point, the only thing I could manage to do was crossword puzzles, and that took FOREVER just to get one done. I used to be an ace at those as a child, I could have one done in less than 3 minutes.

Popped open my laptop and went online to find “Easter Eggs” of information. I searched many things, but educating myself on histamine was the start.

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.

My Iced Coffee isn’t the same as yours…

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One Cup at a Time. My love for Coffee.

I didn’t like coffee at all until I was in my mid 20s and I had a friend bring me a “crappuccino” (my favorite term for cappuccino from a gas station machine). I ran around feeling super zoned and focused until the crash, and then I experienced the craving again. I fell in love.

Tie Dye Tumbler!

Actually, I had an affinity for coffee dating back to my childhood. The smell of fried bacon, eggs, and coffee radiating from the kitchen of my grandfather’s house in Kentucky. Vividly, I can remember those smells. I don’t know why but the SMELL of coffee would wake me up in the morning, it was the indicator that my parents were awake. Then, when I was old enough to figure out how to make the coffee, if I was up before them, I’d make it but never consumed it, that stuff was disgusting. Until that fateful “crappuccino” and then I was doomed, what was this life-changing deliciousness?

Little did I know that I had been slowly poisoning myself, and when I was in my most toxic flare of Mast Cell, it became very apparent that I couldn’t drink it anymore. I was ADDICTED… everything in my life revolved around whether or not I had my coffee. No one could speak to me until I had my first cup, and when I say first cup, I had a 42 oz tumbler, full of iced coffee. I would drink three of them a day! My iced coffee is not the same as yours, I promise you that. I had become a full-blown barista in my home. I had a coffee press, an espresso pot that you use on the stove, a Keurig, and eventually I learned how to COLD BREW straight up espresso. You name it, I could make it, and would if my heart desired it that day.

Handy Cold Brew Pitcher!

If the coffee in my cup couldn’t “grow hair on your chest”, it went back down the drain. I was at the point, that some of the BIGGEST chain coffee places were “okay” but still too weak for my blood. If my blood didn’t look like coffee, smell like coffee, something was really wrong. Until they actually pulled a vile of blood out one day that literally looked like left over coffee ground goo….I swore to them, “I swear I do not have a coffee IV at home, although I wish.” (They never did figure out exactly why I had alien blood that day, but it made me take a step back and look at my diet.) My addiction was actually adding to my demise.

Remember mold and yeast had infiltrated my body. Little did I know that in the U.S. they ALLOW a certain level of mold and such to infiltrate our food. It’s on the FDA website, there’s actually a scale they measure it by. For each cup of coffee I was drinking I was actually ingesting even more mold. I needed the caffeine to operate, without the benefits of the caffeine, my body just was blah, I had to eventually resort to the Green Coffee Bean Extract, because I couldn’t have the other stuff. Follow this link, if you need to have a little pick me up, with polyphenol benefits every morning without the crash! They sit out and the sun to mold before they are roasted, this is not conducive to someone now allergic to ALL THE MOLD.

I resorted to buying imported European Coffee from Amazon, to start weaning myself off of coffee, and then I went on the hunt for whatever beverage I could drink that I wasn’t allergic to or had a reaction to. Apparently in Europe, they don’t ALLOW contaminates or mold in their food, Go figure! Water even gives me heartburn. Literally learned how to Cold Brew the Coffee in my own fridge for 24 hours so that it didn’t heat up the coffee and pull the oils out of the bean. It’s the only way I can drink it from a drive thru place. The oils in the coffee bean are the most reactive and hold the most mold content, so if it’s brewed with hot water, I can’t have it. Talk about shell shock to my system. My kids would regularly warn people, including my caretaker, “Take away her coffee, and someone is going to die.” *I giggle at this because really it’s not true, but I’d get pretty darn defensive and grumpy. No one actually died, I promise.*

I guess what really got me was the cups I was using was also an issue I had discovered early on my coffee venture, to make sure I wasn’t poisoning myself indirectly. I figured out that the rubber grommets around the top of the cup, for no spill cups, they grow mold. And you BEST HAVE A SCRUB BRUSH FOR REUSABLE STRAWS, or just use disposable ones, because honey, those will grow mold too, even if you dishwasher them. Trust me.

Synbiotic Gut Health

Knocking this addiction wasn’t easy, and I ended up replacing it with something that is literally not even worthy of mentioning, it isn’t soda, but it’s an energy drink juice. I’m almost certain that it’s probably not the smartest idea at the moment, but it’s the only thing my body doesn’t have a reaction to, including my bladder. Not everyone is the same. I drink coffee occasionally now, in fact the last time I had decided to enjoy a cup of coffee in a drive thru I regretted it for two days, and I’m sure I probably will never do that again for months.

Wearing a mask help save me, but not from Covid…

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By unpopular demand….let’s discuss the facemask!!! MCAS and how it can help.

Before my death-defying Emergency Room visit, my regular practitioner and I had noticed a correlation somehow between mask wearing and my health. We hadn’t put all the of the angles together, but we had noticed a difference. It just so happens that my cousin, caretaker, had convinced me he needed a ride or die partner while I was losing my mind. We would regularly visit a neighboring state about an hour or so away, and he would door dash, and got a little four-hour retail job to help a friend at her store. So, he convinced me to come along. DURING A PANDEMIC.

After all, at this point, my capacity for critical thinking wasn’t there, so I was like, “What the hell, not like I’m doing anything anyway, I’ll sit in a truck.” Four hours sitting in a vehicle isn’t really fun even for a crazy lady. I would have rather held that banana in my mouth for four hours all over again, well not really, but I found myself wandering into the store and organizing product on shelves. That started the beginning of me getting better, and then the masks were introduced.

Eventually it became clear that the more time I spent out of my own house, and wearing a mask, my health improved! Little did many know that the World Health Organization and Europe had already figured out that Mast Cell Activation patients who were already in a flare up, were sort of “immune” to the first strain in the pandemic. We were already in a cytokine storm of sorts, so it couldn’t give us another one. How cool is that!?

Why are the masks so important? It not only blocked the germs of others, but it was blocking breathing in the allergens and some neurotoxins in the environment. I highly encourage all Mast Cell Activation people to put that mask on your face and wear it with pride. I know, I know, you literally HATED those things during the pandemic, but I’m telling you, didn’t you FEEL better? I still took mine off at home and had little reactions and I slept constantly after my excursions to the store, but I was improving, and impressed, along with my doctor!

When the freight manager came back to the store after her leave, she immediately asked, “Why isn’t this woman on the payroll?” I found myself working a job again after three years of not being able to by accident! Turning in the application blew them all away, because corporate said, “You are way over-qualified for this position, you should be a manager.” I responded only with this, “Not at this time.” When I felt it was time, I transferred back to my own state and took on a management position, but I was not ready then, my brain still wasn’t functioning the way it was supposed to but I could focus on OCD/ADHD type tasks of organizing and stocking shelves, and I was good with that. Anything to keep me moving.

This is me Christmas of 2021, I was in the process of healing.

***Disclaimer: Remember, I’m not a doctor, I’m just a patient who was fed up and advocating for myself. I share this information solely because I was encouraged to. From my research and experience, I discovered Mast Cell patients aren’t really immune… or at least not me. I wasn’t in a flare up, when I got the second one, I knew how to cope with the cytokine storm, so it was short lived for me. I was blessed with knowledge before it ever became a big issue. Some others weren’t so lucky around me, and when I begged and pleaded with them to do things for themselves to mitigate the cytokine storm, they didn’t, the results were life damaging and changing for them.

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So I added Melatonin…

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