A Journey into a Chronic Illness Survivor: Mast Cell Activation, Fibromyalgia, Interstitial Cystitis, Osteoarthritis, A blog of what has helped and where I go from here.
Fibromyalgia from a patient’s perspective is probably one of the hardest syndromes to navigate. Not only for patients but also for doctors. What was once thought to be a dysfunction of the peripheral muscoskeletal system has now become an obvious disorder of the entire muscoskeletal and peripheral nervous system. This leads to chronic widespread pain, and dysregulation of many different systems, including emotional regulation in turn amplifying pain perception.
“Fibromyalgia was originally thought to be a peripheral muscle disorder; however, recent studies have shown the presence of central pain susceptibility. Fibromyalgia patients have more reactions to pain compared to normal individuals, as in they have a lower pain threshold. Problem solving skills and defining and experiencing emotions are decreased. Therefore, they have difficulty in expressing emotions, and pain sensitivity increases in the presence of psychostressors,” states the Turkish Journal website.
Alexithymia has currently been studied when it comes to patients with Fibromyalgia. Alexithymia is referred to as emotional blindness where a person has significant challenges in recognizing, expressing, or describing one’s own emotions to others around them. This can have a significant impact not only in attachment but also interpersonal relationships. Alexithymia is commonly recognized and prevalent among individuals with autism spectrum disorder (ASD).
Studies generally show that fibromyalgia patients are individuals who have difficulties in expressing their emotions. Alexithymia rates were found to be high in patients with fibromyalgia,” states the Turkish Journal website.
It is understandable that Fibromyalgia patients have a dysregulation of emotions and responses to chronic pain. Long term emotional distress amplifies many different aspects of Fibromyalgia. It can instigate new pain, thoughts of hopelessness, financial distress from a multitude of physician visits, along with medical anxiety of having new symptoms appear out of nowhere. Patients can also feel guilty for not being able to complete simple tasks along with having difficulty thinking or remembering. Fibromyalgia also creates an environment for patients that either sleep too much or too little, changes in appetite, unusual anger and/or irritability, and the need to isolate from people or activities to navigate their symptoms.
If you feel as a patient that you struggle with the above listed symptoms, it can be helpful to be assisted with different options available pharmaceutically coupled with cognitive behavior therapy. Definitely seek help from your physician promptly. Stay calm, stay cool, collect your thoughts, and continue to educate yourself about Fibromyalgia.
There’s been a lot happening in my life that doesn’t happen to be anything about my chronic illnesses, however they directly have an effect on my wellness. Remember, that just because you are doing everything possible to control your illnesses, the outside world and uncontrollable influences can send you into a flare. I’m really allergic to stress, even emotional stress. How can I tell?
I have this superhuman ability to gain like 5 to 10 lbs. overnight, which my kidney specialist told me one time was absolutely impossible. No one can eat or drink that much in one day for that to just appear. No doctor had an answer. However, here I was being this fabulous super growing and shrinking woman depending on what was going on in my life. Never did we realize at that point in time, it was directly correlating with the stress that I was under. Yet here I am, rocking it, even when my body was in a peaceful state as far as illness the day before.
So, I’m going to share with you some wisdom, that has seemed to come to me over the past few years. It took a group of my family elders and myself along with an example that shortly followed that brought me to this outright wisdom.
In Parenthood and Life, “It is okay to be human, but it’s always best to be a GOOD human.”
It takes nothing to be a Good Human to Yourself. Picture Credit: Engin_Akyurt/Pixabay
There’s been many different times I’ve asked myself over my lifetime, why certain people just choose to be a bad human. Then you wonder what kind of people would raise such a human. I am naturally a curious person and a people watcher. I even studied a bit of psychology when I was young in high school prepping for college, along with any and every child development course I could and even though I didn’t follow through with any type of degree, it certainly helped me in some pretty tight spots myself.
You can meet some of the most insanely nice people and then there are just inherently bad humans, ones that steal, lie, cheat and or abuse others. However, you meet their families and parents and question “How is that even possible?” No matter the upbringing, humans are responsible and should be accountable for their own actions, and sometimes they just aren’t, and refuse to.
It’s going to directly affect you in one way or another, but you still have the choice to still be a Good Human, and act accordingly if someone does something to you that hurts you. You have control on how you react to certain situations. You do not have to bow down to their tactics, walk their path, you have the ability as a human to walk away. Even good humans, still make mistakes, choose the wrong path inadvertently, but eventually they find their way back on the right path. It takes time and it takes patience for them to catch back up, but everyone has to make their own path, and that’s okay. Like I said, it’s okay to be human.
You personally, for your well-being (and sometimes health), have to be willing to allow yourself the patience and kindness to remove yourself from that situation. You have to remember “I am human too; I have offered my help, my love, and my advice, that’s all I have to help a fellow human. I can only maintain the things that are within my control.” Whether it’s a family member, or just another human friend, sometimes you need space, and that’s okay. As a Good Human, you also have to be a GOOD HUMAN TO YOURSELF AS WELL.
Let peace reside in your heart as much as possible, to reach the best possible feeling of well-being whether you are chronically ill or not. Love and Guide where you can and forgive the ones that choose differently because it’s out of your control. –Wellness wishes from your Author
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Recently I have been doing a lot of series work on Fibromyalgia for Newsbreak. I have been sharing a lot of information there on the research I had recently done. One thing that during my research I discovered a lack of L-Serine was discovered in Fibro patients’ urine. L-Serine is an amino acid that our bodies use daily, and usually produce, and there is a block.
I threw caution to the wind and went ahead as promised, and used myself as a guinea pig, and so far one week in, I’m going to give you a little update. I was actually having great success with improvement on brain function and sleep just by methylating, and that is fabulous in and of itself. My sleep has been so restful I’m barely dreaming now. When I first started, all the chips were stacked against me. I am taking 4 L-Serine tablets, which by the bottle says is a 2500 mg dose, morning, noon, and dinner, along with the methylfolate x 4 and the vitamin b complex x2 that I also take. (I did also read that it is highly suggested to have the proper b vitamins to process your amino acids anyway, so “Methylating” is a better choice so that you know the nutrients you are ingesting are doing their proper jobs in cell reproduction, repair, and healing as well.)
What I mean by the chips were stacked against me, was that it literally was a weeklong barometric pressure drop, my muscles were beginning to burn in my neck and shoulders. Long periods of time sitting and just reading research was really starting to get to me, so I actually pulled out my TENS Unit Portable Rechargeable Massager. Now if you follow me on Newsbreak, you can do that by following my link to the electrotherapy article to see how well this unit is helpful for you, you know that I have a tendency to write articles that either 1) are directly affecting me in the moment or 2) something the readers have reminded me of, that at one point I also struggled with. As I continue this journey of “healing” I know that there is not a cure, but there sure are things that have alleviated such a great deal of what I used to deal with, that I seem to “forget” at the times, the worst of moments. I really don’t forget them, they just are locked away in that box, that I don’t have to pull out near as often as I used to *I count my blessings*.
So far using L-Serine seems to be allowing my body to rest more completely and comfortably. It’s also providing me a level of comfort and analgesic type effects when the muscle pain is at it’s highest, and I’m good with that as well. It doesn’t make it entirely go away (Depending on how long they’ve been aching and burning) but it seems to “warm up” my muscle tissue in that area at the moment, and then fade, like an internal type “old people rub” (the best way I describe Lidocaine that I use when trying to sleep sometimes). So I’m going to continue on using the L-Serine as a supplement. I will probably drop down my dosage next week to see if it does change things.
Since my body does respond to external stimuli and barometric pressure and weather changes, it’s hard to wage the differences for myself, let alone if you are following in the journey with me. Just remember, one day you could feel great, and think things are going good, and then the barometric pressure drop or something crazy, and stay that way for days, overloading yourself. This week in particular I had not only external issues, but I also had emotional stress as well, so much over stimulation I had to take a few mid day naps to make it through. Not going to lie, a few cocktails as well just to help me smile. That’s a story for another day. Remember, have patience with yourself, with the things you do to try to navigate this life and heal, always be mindful of your need to rest, when life gets to be too much. If you don’t stop and say, “This is too much.” Then you go hide in a quiet place, to return to a state of homeostasis. If not, you aggravate your pain levels even more and your anxiety. Even if it’s just for a few minutes, but a few hours always does me well. You don’t even have to have chronic pain or illness to know where your boundaries should lie, everyone gets overwhelmed from time to time. Much love light and wellness wishes to you all! –Your Author
Funny story, I came across an article that I wish I had found a few years ago. I actually wish that it had existed when I first got sick 6 plus years ago. It would have made a hell of a difference in my life.
When massive bloating happens along with a 15 pound weight gain in a week…..MCAS may be a cause. Picture Cred:Pixabay“When a patient reports massive bloating accompanied by a 15-pound weight gain in a week, or that they can only eat a very restricted diet because they have instant horrible reactions to foods, or are experiencing weird neurological symptoms, or that they have become ultra-sensitive to a wide variety of stimuli, I immediately wonder if MCAS is at play. For some patients, the recognition and treatment of this condition have made a big difference in terms of quick symptom relief.” stated the Psychology Today website in 2019.
I remember that conversation with my Kidney Doctor, she was the only physician who tackled this complex case head on, and back in 2016/2017 Mast Cell Activation was rarely even discussed, and still hardly recognized as a condition. My condition perplexed all my physicians. If ONLY we knew then, what we know now, I may have not degraded quickly and almost lost my life. However, as I was kindly reminded last night again, I guess I never gave up the fight or gave in, I never stopped searching for answers or doing research, or using my body as a guinea pig. I was either going to get better or die. Those were my only options, and I CHOSE LIFE.
But to read this, reminds me of countless doctors that tried to get me to believe I was in a psychosomatic condition, that it was all in my head, when it was REAL.
When patients consult their primary care doctor with many seemingly random dramatic complaints affecting unrelated organ symptoms, which often feature prominent psychiatric symptoms, they are often thought to be suffering from a psychosomatic condition and told “its all in your head.” They may be sent home with a prescription for an antidepressant or anti-anxiety medication, which not only is experienced as invalidating but does not address the root cause of their symptoms.” stated the Psychology Today website .
I chose not to buy what those physicians were selling. It wasn’t in my head, and I had to trust myself on that. I chose not to be invalidated. I felt defeated several times, but never did I invalidate myself in my head or resign to believing this is just the way it was going to be. Super bummed yes, but never to the point of being willing just to give up. I sought advice, and information as much as I could hold in my head for short bouts of reading.
Why Neurogenesis and taking notes are so very important.
“But I love it!” The boy is grasping his paper tube roll with all his might. It is now his prized possession. Kids are hilarious, you can buy them a $50 toy but they would rather play with the boxes they came in, or latch onto the wrapping paper tube that supplied the paper you wrapped said present in.
One of our dearest friends gifted our little man with a wrapping paper tube. This was now his only source of fun. Also, a source of annoyance and bacteria. Talking into the tube, shouting at people, using it as a megaphone of sorts. Poking people, using it as a cane, just like “Dr. House” on the television. Sticking it in muddy floorboard water in the vehicle on the trip home and licking it like an ice cream cone. Arguing that now he needs to SLEEP with it. Arguing he wants to take it everywhere with him, oh to be four again.
These are memories that would have been forever lost for me had I not written them down. Also a habit that once I formed it, I continued to do even when I was sick. They are scattered about in notebooks, stored in files on my NOTE on my phone, and various other places. Had I not formed this habit early on, I wouldn’t be able to supply you with the valuable history and information in how I navigated my chronic illness and beat my death date of 5 years. It’s been an entire YEAR from the date I was supposed to meet my demise.
I also began a log of sorts for my kids when I was given the approximation, I only got a few pages in for both of kids at home, logging memories for them that I had scattered about, until I “forgot” about that project. In hopes that if I did meet my demise, that they would have cherished memories I had written down in my own handwriting for them to keep forever. Out of all the advice I can give you parents, I pray that you listen to me on this. If you are not doing that, I beg of you to do it now, because as the old adage goes, “TOMORROW IS NEVER PROMISED.”
Yep, this is my brain, with all the black voids.
The really cool part is, I had enough gumption to keep a running list of medications, and supplements I was managing, and a list of all my doctors, neatly typed on a few sheets of paper stapled and attached to any new business cards or information I had to add to the list in my “drug purse” at all times, to take everywhere with me. This came in handy for a few ER visits, and every doctor visit I had to attend by myself, when there wasn’t a caretaker with me. It would have also been even handier had I been totally incapable of doing anything or communicating at all. **Another piece of advice for you or your loved ones if you are suffering from chronic, systemic, or fatal illness. ** My goal was to stay alive long enough, to figure it out, even if no one could do it for me. I had given up a lot of hope that anyone was going to be able to save my life before my demise, so with what little energy I had, I put all my effort into figuring out my body for myself, with my regular practitioner along for the ride. (His file on me cannot even fit in a 4-inch binder.)
Solidly I can contribute my survival on my desperate need to figure out the answers that no one seemed to be able to give me. They could placate symptoms with a ton of different drugs, but I wasn’t okay with dying, not yet. Neat little fact for the ones who don’t personally know me, I was in the automotive field for years, I have a mechanical engineering type frame of mind. If there is one thing I know for certain, there has to be a CORE issue to what was causing ALL of these issues, and even with the MRIs it still took me two years to conclude, that first and foremost my brain damage, could wholly be my issue. A friend in the medical field mentioned to me once that they had read, scientists had figured out how to regenerate brain matter. Shortly after there was another friend who birthed a son. No one knew until he started walking that something wasn’t “quite right” he had a limp. Several tests later and an MRI shown that the frontal cortex of his left brain was entirely missing, he was born that way. However, funny thing, nothing else seemed to be wrong, his brain started to rewire itself around what he was born with. If you need a sign, that was the sign I needed to not give up. I went to work researching like a mad woman, and I had the attention span of a gnat, and the big words confused me, most of it didn’t make sense, but when something did click, you bet your ass, I was taking notes on it until I came to a conclusion or a dead end, or I found a supplement to TRY to see if it would get me anywhere. I REFUSED to listen, I REFUSED to submit to a fate that I did not want, and here I am.
One thing I had to be careful about supplements was not falling for all the combination supplements out there. I had Interstitial Cystitis, I had to be very choosy about the things I put in my body, as to not aggravate my bladder. Funny thing, my bladder was the source of my heartburn, but it was also the source of my asthma. I VERY rarely ever have to use my MONTEKULAST (but I still keep it on hand, just in case) or my rescue inhaler in nearly four years. Even through the pandemic, I didn’t even need it when I got the second strain, my symptoms were very mild and short lived. I always choose supplements which I know the composition inside and out, and trust me, my feeds were blowing up with “miracle” supplements for everything. It seems so much easier to take ONE PILL, right? Nope, not this girl who’s allergic to ALL THE BULLSHIT.
My focus became figuring out how to repair my nervous system and create neurogenesis. (Or at least simulate it.) Again, I’m not a doctor, and I won’t even know until probably next year whether or not I really did anything to the white matter that is missing in that thick skull of mine. However, I do know, that I am a100% a functioning human compared to where I was at in 2019. I still do have massive migraines and headaches from time to time (I like to think that it’s just brain matter growing back, I don’t care if it’s denial. I’m stubborn). Mast Cell Activation will be a thing forever as far as I know. I still have fibromyalgia (at times) it keeps getting less and less though, Interstitial Cystitis may be something I will have forever, and a little neuropathy, I am able to navigate all of these successfully without outside help of prescription medications, and I’m damn proud of that. I’m here TODAY in the process of writing a book, a blog, and teach others there is HOPE, and you don’t always have to submit to placating yourself with a bunch of crazy medications the doctors hand you if you don’t really have to or want to. My favorite part of all of it, I can read and understand, and REMEMBER everything except TWO years, where I have to almost rely solely on most of my notes. MIND OVER MATTER PEOPLE!!! Quite literally, I have more mind than matter, I believe. Ha!
“NEUROGENESIS – DEFINITION
the birth of new neurons. Although most neurogenesis occurs before birth, it is also recognized to continue into adulthood in at least two areas: the hippocampus and the subventricular zone.”
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.
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.
**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!**
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 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!
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!
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.
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!
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.
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.
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.
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.
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:
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.
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.
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!!!!
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.
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.
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!
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.
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.
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 2antihistamine 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!
ALLERGICTO YOURBULLSHIT 