November 2025     

It all started November 2nd 2025

Well, obviously it started way before that, but for me that was the true beginning to the event that changed ME, for the rest of my entire life.  So Before we Get into November 2nd 2025 here is the recap of Beginning to Now.

The Backstory: You can skip this part, but trust me, alot went on that lead up to my Now current Journey.

Many years ago when I was about 9 years old (that’s when I first remember) I started getting migraines and at the time, headaches were apparently not common in children, Or so my mother told me. “Kids don’t get headaches”. Bless her heart, that’s just how doctors were, they stupidly thought kids really couldn’t possibly feel pain quite like that, so you guessed it, kids that complained of headaches or any other kinds of pains were labeled lazy. I don’t blame my parents at all for the dismissiveness toward my struggles, I mean seriously, what else would a parent do if their kids were constantly complaining about pain every time they were told to do a chore.    Although the migraines may not be all that significant to “THIS” story, it is a note of when I first started experiencing true pain, and learned to develop that “thick skin” and realize I had to “Deal” with it and move on.  I digress.

Jumping to the age of 16, or around that age. The headaches (Migraines) were quite prominent and quite often, but I masked it and hid it quite well, but now a new “Symptom” had arisen. Back pain, I remember it didn’t take much for me to have back pain that just wouldn’t go away (Middle of spine at shoulder blades and lower back just above tail bone.)     

Depending on the Generation you were from here, do you remember back in the day when there was this yearly exam the school staff (Teachers and probably Phys Ed teacher or coach) would give you. They ran their finger down your back (over the spine) super quick and determined if you had scoliosis or not? Well, I do, not because they found anything, because frankly, our “examiners” did this exam so quickly and so unprofessionally that they missed anyone possibly having any issues. Yeah, they totally missed mine for many years.  However, at 16, not the teachers, but one of my best friends was rubbing my back one evening (she had me sleep over) after I had been complaining of my back hurting. She squealed out loud in terror as she followed my spine. She gasped and said, “OH my god, your back is screwed up”. So I felt it, freaked out, took me forever, but I fell asleep. Went all day at school the next day, couldn’t concentrate on anything else, but What is wrong with me. Got home, Told my mom, and since there was actual proof, she took me to a chiropractor. They took x-rays and confirmed, yes, I have scoliosis. My spine looked like an S. You know what really got my goat. When my mom asked the doctor if this could cause the pain “I was claiming to have in my back and head”.  That Jerk said. NO. Scoliosis is completely painless.  LIE. So there I was again, in pain and not believed. So, not only did I have to learn how to mask the migraines, I had to mask the back pain as well.

I had remembered that at some point a gynecologist told me that my “Monthly” was the cause of the extreme IBS I had started dealing with as well, on top of everything else.  I remember one specific moment at the age of 12 - 14, I was playing outside with a friend and doubled over in pain, I rushed into a bathroom and “Unloaded”, but this was remarkably painful, so painful that I ripped the toilet roll holder right off the wall as I was gripping it during a painful intestinal spasm during defecation.  This act repeated itself on a regular basis for the rest of my years. It now became “Just another pain I had to deal with”.

Age 16 and extremely painful & extremely heavy monthly cycles, what we now know was ovarian cyst pain. I would often get weak, light headed and the pain was so intense I couldn't walk. I was told, Take a tylenol and go to school. I spent a lot of time in the nurses office, passed out in class a few times and had many, many accidents due to Excessive bleeding.

Moving on to age 21. During my child bearing years (First child at 21, 2nd at 25 and 3rd at 32) During my second pregnancy, I started dealing with pre-cancerous tissue on the cervix that had to be removed in various way (frozen, burned) while I was still pregnant. At my age of 26 we found a lump in my left breast, had outpatient surgery to have it removed, pathology came back as Pre-Cancerous Tissue. I dealt with consistent cysts for many years that were painful. Meanwhile the migraines were getting worse and worse the older I got. 

My husband at the time decided that we could pay “OUT of pocket” for health needs, so NO insurance. I tried to get him to let me go see a specialist about the migraines, but honestly, I think he thought I was faking it. (He admitted this many years later). So, NO doctors. I self medicated .

After countless visits to many different Gyno’s and countless procedures to fix the problem with my uterus, I got my tubes tied after my 3rd child, I was 32 years old. That gyno refused, even with my history, and even though I had 3 kids, refused to give me a hysterectomy. I spent years finding new doctors until I found one at the age of 47-48 that agreed, at the least, a partial hysterectomy was needed. 

At the age of 40, I was divorced and on my own again, but finally got Disability SSI for the migraines and also got Medicaid. Now having Medical insurance I was free to pursue help for my illnesses. Countless Neurologists were seen, hundreds of medications were tried over the years, and many years of damage to my kidneys and liver was made due to all the medications they put me on. But what choice did I have, I had to find relief for all these dangerous symptoms that were killing me.

I ended up with a diagnosis of NAFL (Non alcoholics fatty liver), I was alternating taking heavy doses of Excedrin migraine, Tylenol and ibuprofen DAILY, as my migraines had become DAILY. I was killing my liver. I didn’t know that was going on.  

 I was also diagnosed with a severe case of calcium deficiency (which led to having hyperparathyroidism ), resulting in a surgery to remove 3 of 4 parathyroids. (read more about that below).  Which also lead into finding that I had Osteoporosis the likes of which a 70 yr old would have.

In 2018 I had a partial Hysterectomy. Leaving my tubes and ovaries behind so I wouldn’t go through such a harsh “Menopause”. Something went wrong. Within a week after getting home, I could no longer eat, the pain was unbearable and I couldn't walk. I ended up getting an ambulance ride back to the hospital because I was deathly ill.  Turns out, my cervical cuff that was put in place had bled and left me with a huge softball sized hematoma forming. That ball of blood leaned on my intestines and I ended up in emergency surgery to remove 8 inches of intestines. That procedure was called a Bowel resection. I was in the hospital for a few days and went home. Everything was good, I thought, until yet another infection set in. Got rushed into the ER a week after just getting home from the Bowel Resection, just to have another surgery. A tube was inserted through my backside so the infection could drain. That took another three days in the hospital.

It took about a year for me to feel better and recover from those surgeries.

Somewhere in the midst of all that, I went to doctors again, early 2019,  because I was feeling weak all the time, hormonal changes were driving me nuts and it seems all I had to do was sneeze and I would break the same two ribs in my chest (it happened 3 times before I got to a doctor that would listen)  and ended up being diagnosed with Calcium deficiency and extreme osteoporosis - and hyperparathyroidism.  So they put me on vitamins that did absolutely nothing at all to correct the calcium levels and surgically removed 3 of the 4 para-thyroids. Yay, another surgery added to the list.  I did start to feel better for a while.

Obviously, now at around the age 50 or so the hysterectomy was right at the beginning of my NEW found love of “Menopause” Oh the symptoms with that one.. Hot flashes, night sweats, mood swings, worsened back pain, worsened migraines, leg cramps at nights, Bedroom time was eliminated as it was too painful, and the lovely realization that my bladder was shot and was up several times a night to use the bathroom. It started out that I woke up 1 or 2 times in the middle of the night to urinate, I just wrote it off as having a weak menopausal bladder and probably needed to stop drinking an hour before bed. Although, I will admit, that never worked. At one point I felt very dehydrated so I went back to drinking my water as usual and just figured, oh well, this is life. It didn't matter how long I went without a drink, I still got up a couple times each night to pee.

After the hysterectomy, little did I know that everything was going to change and get much much worse.

I was living with constant bouts of diarrhea and constipation, they took turns, I was told that the IBS I was diagnosed with was flared up by the surgery and was likely going to just be “A part of the rest of my life” because of the bowel resection, I was also told that at some point over the next 10 years, I was likely going to end up being impacted again and need another resection.

Sometime around 2021 (Amidst the Co-vid experiment) I got fed up with the constant stomach pain and the bowel issues and started seeing doctors again. I had a couple Colonoscopies' by a couple different doctors and they all came back “Fine” however, Dr. Vera was a godsend, January 2024 I saw her and she put me through extensive testing and wouldn’t stop until we got some kind of diagnosis that made sense. But, unfortunately, she missed something altogether. I will get to that in a minute though, what she found was that at some point in my life (I recollect it happened sometime when I was a teenager age 12 or so, I was bit by the lone star tick here in Missouri). I can not pin point a specific day, date or time, I just remember vividly that first time I ripped the toilet roll off the wall through the pain of defecation.  Back to the story, I went down the rabbit hole learning all there was to know about Alpha Gal Syndrome. 

My excruciatingly painful bowel movements were caused by simply being exposed to (Eating, touching, breathing in mammalian products-by products) anything even remotely connected to Mammals. Animal meat from 5 legged animals was off my diet, NO by-products could be used in any form or fashion, no butter, no bacon, no jello, no gel cap medicines, going to a restaurant was risky of exposure. My entire life changed, not just my diet, but makeup, lotions, any medication I may get prescribed, procedures with Doctors etc.. Everything had to be under scrutiny and carefully planned. I spent the last two years eating chicken every day (I could also eat any kind of fish or sea food) . Everything basically had to be vegan. This was great news though, or so I thought. This meant my previous diagnosis of IBS C and IBS D was incorrect. It was actually Alpha Gal syndrome, and simply avoiding mammalian meat and bi products, my symptoms would drift away. Well, the Bowel symptoms anyway.  Boy was I wrong.

Mind you, I had to do these last two years on NO health insurance. Shortly after my Alpha Gal diagnosis, my now husband and I decided to get married after having been together for 5 years. The government didn’t like that, I lost my disability and my health insurance. Our combined income was $22 over the amount they considered to “qualify” us for help. Apparently they do this a lot to the “WOMEN” if they get married and are/were on SSI or Medicaid.  So, for the last two years I have been having to “tend’ to my illnesses via Homeopathic methods.  Which led me to November 2nd and the most horrific news I had gotten so far.

For the last two years I was having “Alpha gal” reactions to things that made no sense. I was meticulous about what I put in and on my body, to what I exposed myself to. But alas, I still had daily diarrhea, the constipation only happened now if I took a pain pill, which wasn’t very often because I sparingly used the “Left over” meds my husband had gotten from the doctor, from his health issues. (You know, because I couldn't go to the doctor, we couldn’t afford a doctor's visit let alone prescriptions on NO income).

For brief period I got a part time job working for a pool company typing out phone call messages and emailing them back to them. They let me work on MY time, when I felt up to it. So usually About every 3 days I would do the job. I was down most of the time with migraines.  That job ended and my neighbor delivers Express mail to the town next to us. She needed someone to do that job while she was gone so I started working for her. The job was simply driving for 20 minutes to the next town over, delivering a package to the post office in that town and driving back home. No exertion on my part, if I couldn't drive due to a migraine my husband would drive me.

Well that job ended when we started this new "Cancer Journey".