Let's Start At The Very Beginning.... A Very Good Place To Start.

 Do-Re-Mi! Okay, not that kind of beginning. The beginning of my journey. The journey I reference to when people say "You're too young to be going through this" or "You're so young, I'm so sorry" or "This kind of stuff should never happen, (again) you're too young" and I always respond "Well, this is just part of my JOURNEY" because to be honest, I don't know what to say when people say those things to me other than agree and say it's part of  my journey. I am a medical mess, it's a long story. So, lets take it from the top. 

This story begins on a cold January morning with snow a few feet high. Four boys being put in a big red 4 door ford. Then a man and woman climb into the front seats. This is my wonderful beautiful family. And this day is when I was born. I have four wonderful older brothers and a loving mother and father. I was brought into this world on my mother's birthday. And what a beautiful thing, I get to share that special day with my mom EVERY year. So, that's pretty cool. I grew up in a loving home with 4 protective brothers. At the age of 2 we discovered I was legally blind. I got my first pair of (PINK) glasses. The story my mom told me is I sat on the front porch looking around for the longest time. This was the first time I was able to see clearly! It was a pure magical moment for my family and myself. Like something you'd see in a Disney movie! From there I grew up like most kids with glasses. Got those not so creative "4 eyes" comments and I had such a great support system that taught me to love myself. Over time my eye sight improved with correct prescriptions and lenses. 

Over that time I dealt with bullying and physical abuse from classmates at school. Eventually in 9th grade it got so bad I had to be home schooled and part-time attended a technical school for high school students. That's where I discovered my love and passion for agriculture, horses and animals. With animals, they hear you. They see you. They understand you. They do not judge you by appearance or if you're cool or not. And they don't have to say a word to let you know they understand. Oh, best of all, they are the best at keeping secrets. I developed PTSD and anorexia from the bullying, it caused so much heartache and pain that was healed through working with horses that have been abused and neglected. That was when my heartbeats changed to hoof beats. Horses will forever and always have a piece of my heart, they saved my life and healed my heart. They made me strong physically and taught me how to stay on when life is trying to buck you off, even when you're terrified. 

Pictured here is myself with one of my beloved horses.

Another thing that helped me through my teenage years is music and dancing. Music is such a beautiful thing. It can take you places, it can make you laugh, smile, cry tears of joy or sadness. It can create so much and make you feel SO MUCH. It is amazing. Then you add movement, dancing. When I listen to music I can feel it in my chest and it reaching to each toe, finger, and the top of my head. I feel music so deeply. It started with piano, then violin, then progressed to chimes, then to singing. And singing took me places. It allowed me to open my heart and pour it into my songs and share it with people. Once I started singing I learned, guitar, mandolin, drums, and ukulele. Between music, horses, my amazing support system with my family, and therapy I healed and got my confidence back and was comfortable in my own skin and most importantly, I was happy. My personality is go go go and do do do. Always busy always have something to do and somewhere to go and 500 projects in the works and BIG plans and goals! I could work all day on projects or at my job from before dawn and after dusk pouring my heart and passion into everything I did. And I was like that until October 2020.

One of the performances I did when sharing my passion of music.

In October 2020 I started to notice my IBS (Irritable Bowel Syndrome) was acting up. I've had that since 2014 so I knew the drill on how to get through it. But this time, it was different. The cramps got worse, my bowels were not only constipated now. It would dramatically switch between diarrhea and horrendous constipation. Some days I couldn't even eat. Was it a food allergy maybe? Is it stress? I did just move into a house with the love of my life a few months ago. Maybe it's the stress of a new house and taking care of it? It didn't make sense but I tried to battle it. Then at the end of November 2020 it got so bad I was vomiting and bloated to the point of looking 3+ months pregnant. I made an appointment with my doctor. I then drove in the first blizzard we had of the winter. My doctor pressed on my stomach and asked me questions. I was in so much pain. He had a hunch, so he did blood work. With COVID happening testing was taking longer than expected. I didn't get my results until December 23rd, 2020.

I have Celiac Disease. When I got the call I fell to my knees. I had so many questions. But how do I even formulate the questions when I'm in a sort of shock and confusion. The nurse told me to start a gluten free diet and gave me a list of food groups to also avoid and to start taking a multivitamin. They also wanted to send me to get a colonoscopy and endoscopy. I'm 24! And I'm getting a colonoscopy? I thought only people over 50 had to worry about that! Now, let me tell you. The prep.... SUCKS. It's not fun. I had to do the 2 day prep and it was miserable. I will never like lemon lime Gatorade ever ever again. I hate it. And I despise lemon Jell-O. If you've had to do the prep you'll totally understand! Oh and I worked from home both days of prep. I had a phone job. It was terrible, but like I said I'm very go go go and do do do! I don't like just sitting there being sick.... drives me crazy I'd rather be at work doing something! I was very grateful when that was over and I was awake being walked to my boyfriend's car to go home. Bring me the Chick-fil-a!! 

Results came back, looks like there wasn't much damage to my small intestines! Yay! But, my lower colon was very inflamed. They didn't think much of it when the biopsy results came back normal for that area so I didn't worry about it either. I kept up the gluten free diet and cleaned out my entire pantry. You'd be surprised what gluten is in, I'm telling you, it's in EVERYTHING! Even things it really doesn't need to be in! And sometimes they put it under sneaky names or in the general "NATURAL FLAVORS" ingredient. Classic, great, thanks. Not like I needed to know what was in this, oh wait. I DO! Because on top of Celiac I also have allergies, I am seriously allergic to latex, bananas, avocados, MSG (monosodium glutemate, it's a preservative), ginger, stevia, and other artificial sweeteners. It makes things very very challenging. I'll tell you that! Calling a restaurant before hand and I tell them to be patient because I have a lot of food allergies/sensitivities and I'm going to ask them a lot of questions and I need them to be 100% sure on their answer. It's great. Wonderful. Not frustrating for both parties at all. 

Anyways, things were going, not great but not terrible, they were just going. Going gluten free there is a learning curve. Then on February 1st, 2021, I went to bed for the last time as my old self. That was the last time I would be able to walk comfortably without pain. That would be the last time I would work a full 40 hour week at work. That would be the last time, I would sleep perfectly sound and not have to toss and turn for hours and hours just to find a somewhat comfortable position. That would be the last day I could take a shower and not be wiped out and have to nap. That was the last time I felt almost 100% normal.

I woke on February 2nd at 6:55 am, but not to my alarm. I woke with a pain in my pelvic area. I went to the bathroom and sat down to go pee. The moment the urine touched the outside of my urethra I was in excruciating pain. The worst I had ever experienced in my life. Do I have a bladder infection? How did this get so bad overnight? I haven't had a problem in the last couple days and weeks..... I then touched the area. I almost let out a scream of pain but bit my tongue because I didn't want to wake the house. I quickly pulled my hand away. I was terrified. What is wrong with my body? What is happening? I bit my tongue and was brave. I used a hand mirror in my left hand and parted my vulva with the right hand. Massive genital ulcers. I was shaking from the pain. I wiped my hands and did my panic thing I always do when I feel scared and don't know what to do. I folded my arms and shoved my hands in my armpits and slouched over. Then I experienced another pain in my armpits and pulled my hands away. What is happening??? I lift my arm and pull away the t-shirt to see sores in my armpits. I then became more aware of my body and the pains it was feeling I had a pain in my mouth. I patted my privates dry and washed my hands. I then opened my mouth and pulled the corner of my mouth back to see ulcers in my mouth. I fell to the floor in fear. All I could feel was the fear. I couldn't sit, I couldn't pee, I cant even put underwear on that touches that area. I didn't know what to do. I texted my best friend and she said to make an appointment ASAP. This is what I did and got seen that day. They suspected herpes but I knew deep down in my gut that wasn't it. I know it wasn't an STD. I have been with the same man for 5 years. There is no way and I'm not going to throw his honor in the garbage. They ran test after test after test. All the STD tests came back negative. I knew it. But that's all they tested me for. I was furious. I then went to my gynecologist. He straight up told me from looking that this wasn't an STD and was worried it was Crohn's Disease. By the time I had seen him the next week the ulcers had spread up into my vagina, cervix, urethra, and bladder and still couldn't walk or sit for long. He did swabs, biopsies, blood work, took urine samples and everything. He went above and beyond to help me find a direction and do the tests that needed to be done in the first place. 

Two days after that appointment I woke up and was unable to move the left side of my body and had a piercing feeling through my left breast into my shoulder blade. It was horribly painful. I ended up in the hospital. EKG was normal. They ran a bunch more bloodwork. MRI's, x-rays. You name it, they ran it. They found the lining of my lungs was inflamed and my spinal cord was also inflamed. The doctor also stated that my blood shows inflammation which is a sign of an autoimmune problem. From all the test results and the sores... He said he believes it is Behcet's Disease and I need to see a dermatologist. Gave me a prescription typically used for gout and said to take it twice a day. I was eventually able to move the left side of my body again but it has been weaker than my right side since that incident. 

To be honest. Writing to this point has wiped me out. I'll save the next chapter for the next post.

Stay happy, know you are loved, and you are IMPORTANT. 

~The Unicorn Warrior~