I'm Not Always Me

I'm Not Always Me

Li

By Kalyn Shelton

Topic One: Who is Me?

Today, I don't really feel like the same Me as usual; however, yesterday, I did. I felt like the real Me. That Me is happy. It is strong. That Me is also funny, independent, positive and determined. However, the other part of Me is sad, numb, depressed, tired, angry, confused, and scared. The thing is though, that Me, the last one I described, is not Me. It's not the real Me. It's the Me that's been taken over by a disease and no matter how hard I try, I can't always get rid of that part of Me. I will not let it win. I will not let it change the real Me. I will not let it become the new Me.

Me is not just feelings/emotions. Me is a real person. Me is Kalyn Nicole Shelton. I was born on November 11th, 1994. I was a Bullman when I was born, but that changed 24 years later. Little did I know, my name wouldn't be the only thing about Me that would change. You know, that's the funny thing about life. You honestly never have any certain idea about what's going to happen from one minute to the next.

I guess since we're talking about Me, I should start from the very beginning. I've already told you my name and my birthday, so we'll keep going. My mom's name is Donna, my dad's name is Rick. I have two older brothers, Dustin and Wesley, and a half sister, Angela. Their names aren't extremely relevant, as they're not Me; however, they did have an impact on who Me became and I'd like to tell you about that. Keep in mind that one of the people listed above had the biggest impact on Me out of all. Not just the real Me, but the other Me as well. The one I try to hide. We'll get to that a little later though.

Topic Two: Normal

I had a pretty normal childhood, I suppose. What really is "normal" though? Do you know? Does your definition of "normal" match the same exact definition from the person down the street? Probably not, but guess what?! That's normal! At least by my definition, and for this story to make any sense, my definition of "normal" is pretty important.

Normal - adj- A common name, place, thing, action, or situation. Something that occurs frequently in your environment. Okay, so maybe our definitions are similar; however, what we individually consider normal is definitely different. We are all different. Not just by how we interpret things, but who we are as people. We have all lived in different houses, experienced different situations, and been on different paths in life. What's normal for me, probably won't be completely normal for you, but that's okay. This is about Me and I assure you, I'm not always normal. Not even by my own definition.

Topic Three: Remembering

I grew up in what used to be a small town in North Carolina called Weaverville. I lived in "The Barn House'' with my mom, my dad, my brother Wesley and sometimes Dustin would be there. It got called "The Barn House'' because it looked like a barn. My dad built it before I was born and we lived there while my dad was building "The Big House''. It earned its name because it was about twice the size of "The Barn House".

I don't remember a tremendous amount about that part of my childhood. I remember playing hide-and-seek with Wesley. I would hide by standing in the middle of the room with my back to the door and my hands over my eyes. I couldn't see him, so he couldn't see me, right? Nope. That's not how that works, but try telling that to the adorable little girl that counts "1,2,5,10". I'm pretty sure that's normal.

I remember helping my dad build "The Big House". He worked for H&M Construction and the second that I would hear his truck coming up the driveway, I knew that he was off of work with them and it was time for Me and him to go to work. The Me that was strong, independent and determined, even at that age. Barefoot and as fast as I could possibly go, I would run to meet him at the big house. We worked on that house for over two years and finally got to move in. The thing about that house though, is that it remained a house. It never really became a home and that's not normal.

That's another word that can vary from one definition to another, depending on who you're talking to. For Me, a home is somewhere safe. It doesn't matter what's inside, as long as you feel safe, comfortable, and are able to relax. The Big House never really became a place I could call home, because I never felt completely safe, comfortable, or relaxed when I was there. There were quite a few good memories in that house, especially considering that my blood, sweat and tears were used in the making of it; however, the bad definitely overpowered the good.

My mom was almost always upset and just wanted to lay in bed all day, my dad was hardly ever there, but when he was, him and my mom fought a lot and Wesley stayed in his room all of the time. I didn't have many friends at that age. I did have two nieces that I would play with from time to time, but I played by myself mostly. I wanted to be a doctor and a teacher. I would set up a pretend classroom with all of my baby dolls and stuffed animals. I would teach away until one of them fell and got hurt. Don't worry though, Dr. KK is here!! That was Me, the very high spirited, energetic little one that had the wildest imagination. I would say I was pretty normal for that age.

My parents ended up getting divorced when I was in the third grade and I wasn't able to see my dad very much after that. That was extremely difficult for Me because my dad was my best friend. I had to put my big girl panties on and get over it though. My mom basically hated my dad; therefore, I felt like I was not allowed to mention his name or say that I missed him. Don't get me wrong, Me and my mom were very close and I loved her bunches, but it wasn't the same.

We lived in a few different places, and I learned how to be comfortable with very little materialistic items. I remember Me and my mom having picnics anytime we would eat a meal. We didn't have a table at the time, so we sat on a blanket in front of our heater in the kitchen. Believe it or not, I enjoyed that more than eating at a really fancy restaurant. I also learned that although it may take years to happen, things change and happen faster than you could ever imagine and it becomes normal.

Topic Four: Growing Up

As a little girl, I don't remember ever knowing a stranger. I was very outgoing and talked to everybody I saw. The older I got, the more quiet and less confident I became. I got picked on quite a bit in school, mostly because I was "weird", but I suppose that's pretty normal. I hung out with the less popular kids. I dressed like a boy (basketball shorts/sweatpants, a t-shirt and tennis shoes). I had gapped teeth, glasses, and a lazy eye.

Quick flash forward, I am still a little weird. I don't have many friends, I still kind of dress like a boy (blue jeans, a t-shirt, tennis shoes or boots). I still have gapped teeth, glasses and a lazy eye, but guess what? That's normal for Me. I've always looked this way; therefore, I have no idea how it would feel like to look different and as far as I'm concerned, that's okay with Me.

I made it through middle school, being the weird one, but here came high school and I wanted to be normal! I tried hanging out with "The cool kids''. I liked boys and since I'm being completely honest here, I liked girls too. I just found them to be attractive, especially with their long hair, nice boobs and juicy butt cheeks, but that ended up just being a normal phase that I grew out of in about a year. Looking back, this makes Me laugh. Especially when I explain it, but that's just Me. The goof ball that tries to fit in but also loves putting a grin on peoples faces.

In the middle of 10th grade, my mom and I moved to North Myrtle Beach, SC. I left my peers at school, my brother Wesley, my nephews and my sister-in-law and was ready to start a new journey. I was nervous at first, because I was the new girl and all I wanted to do was fit in, but at the same time I was relieved. I could start over. All of the mistakes that I made in middle school and the first part of high school were behind me. I could start over. I could be a brand new Me.

I still remember what I wore on my first day of school at NMBHS. A black and white Aeropastle shirt, skinny jeans rolled up to capris and my notebook Nikes that Wesley bought me. It took some time, but eventually I started fitting in and found a group of friends that meant the world to me. I also found a boy that I thought was the one. We dated for a little over a year my junior and senior year of high school, but as we all know, high school romances never really last. Unless you're one of those weird couples that were blessed to have found your soulmate that early in life. For the rest of us, including myself, it was just a normal 1st love experience.

Through high school I worked at a store called Famous Footwear and later worked at Krispy Kreme until I graduated. There for a while, I was working both jobs and managing my senior year of high school. How I survived and still graduated with a 3.8 GPA is beyond me, but the Lord was definitely looking out for me.

Two weeks after I graduated, I moved back home to Alexander, North Carolina and left my mom in Longs, South Carolina. When I was little, my mom was there for Me and she took good care of me. She taught me how to care for someone. If I was sick, she would bring me soup or butter toast and hot tea. I had acid reflux and asthma as a kid, so I was sick fairly often. I also had another condition that was lying dormant until the perfect time, but we'll get into that a little later.

As I got older, our relationship started fading very quickly. She was no longer patient and understanding. If she wanted Me to do something, it had to be done right then and there, no if's, and's, or, but's about it. I felt like everything I did was never good enough. If I didn't have the dishes finished by the time she got home from work, she would get very angry. I had to play dodgeball with pots and pans once. That was terrifying at the time, but she's only human. To this day, we still don't have the best relationship, but maybe it's the underlying disease's fault and neither one of us have control of it.

Topic Five: Life Long Lessons

Everyone has to learn about life. We have instincts, but most of our behavior has to be learned. A very valuable person, my brother Wesley, once asked me "What is the difference between a smart man and a wise man? A smart man learns from his own mistakes and a wise man learns from other people's mistakes." While you may want to argue this, it has stuck with Me ever since I heard it.

Wesley was my go to person, especially when I was in my teenage years. Life is very scary, especially at that age. That age is one of the most important parts in life. It's the time that we start to figure out who we are and who we want to be. It's the time when most of our mistakes are made. This is the time when we become smart.

If it weren't for Wesley, I really don't know how Me would've turned out. Being raised mostly by my mom, I was angry and a smart alec. Yes, this is normal for teenage girls; however, without knowing any different, I was on the path to becoming just like her.

Wesley taught Me respect. He taught Me how to listen and be considerate of others. He taught Me how to survive in life. How to budget money, set goals and work for what I want. He taught Me not to give up. To make a mistake and to learn from it, but most importantly to pay attention to what others have done and strive to avoid those situations and behaviors. He taught Me how to be wise.

Topic Six: Young Adulthood and Love

When I moved back to NC, I had money saved up and I took some time off work to get situated again. I moved in with Wesley and his family. I stayed there for a few weeks and then another boy came along. This time, I really thought I had found the one. He was Wesley's best friend and I had known him for over 15 years. I just knew he was the one. How couldn't he be?! I thought I knew him so well and we were perfect for each other. Maybe it's because we truly weren't meant to be and he was only placed in my life to teach me very valuable lessons.

Through all the lies, tears and heartbreak, I learned that he was definitely not the one for me. More importantly though, during those 2 years, I learned about love and I learned so much about myself, that I never would have known if it weren't for him.

During most of our relationship, and even after, I worked at a call center and started going to college. I wanted to be a crime scene investigator. No, a psychologist. Wait! I wanted to be a child psychologist. Hold on! I wanted, and still want to be, a special education teacher. Lots of decision changes and as of now, none of those career choices happened for me. I dropped out of college with 2 semesters away from an Associate in Arts Degree and now I am a CareGiver for seniors that live on their own, or with family. For the first time in my life, I love my job and wouldn't change my career for the life of Me.

Topic Seven: The One

After he and I split up, I moved into an apartment and had a roommate. I was still working at the call center, but I wasn't going to school anymore. I had some free time, needed a distraction, as well as the extra money, so I applied for a second job. Aside from looking for a job, I was also looking for that special someone and we're about to find him! I prayed. I prayed that God would show me the person that I was meant to be with. The one that I was supposed to spend the rest of my life with. He did.

I put in an application at a group home for mentally hanicapped adults, and I was hired on the spot. The lady that hired Me told me to go to the site and speak with a man named Daniel about my schedule. For some strange reason, I had butterflies in my tummy the whole way there. I kept checking my clothes and fixing my hair, because in my mind, I had to look perfect when I met Daniel. But why?

He wasn't there that day, so I had to come back a few days later. I was wearing a knee high dress, and sandals and I felt gorgeous. I walked in, still having butterflies in my tummy and there he was. Daniel C. Shelton. I would tell you his middle name, but I promised him years ago that I wouldn't tell anyone. We'll just leave it C. Anyways, the second I saw him, I knew. I knew that he was the one. The one that God had picked for me and I knew that we were going to be together, no matter what.

The first couple of years weren't easy, but they weren't supposed to be. Daniel had a life before I came along and to avoid losing that life completely, we weren't able to have a normal relationship at first. We kept fighting for each other though, because that's what you're supposed to do. If you're not willing to fight for something that you love and believe in, then you don't deserve it.

I kept praying everyday that God would continue to lead me in the path that I was supposed to be on. After about two years, things started to change. Not for worse, for better. On 06/14/2017, Daniel C Shelton asked me to be his wife, and of course, I said "Yes!" He was the man of my dreams, but most importantly, he was the one God chose for Me and I was not going to let him get away.

Topic Eight: My Girls

An engagement ring on my left hand and the title of "fiance" wasn't the only thing that I gained when I said "Yes!" God put Daniel's two wonderful daughters in my life. No, it wasn't easy, especially at first, but don't forget, I fight for what I want and love. It has taken about 3 years and I still have a lot to work on, but am blessed to say that I have 2 daughters. I did not birth them, I was not there in the beginning, but I am there now and I will be there for them to the end. They are my girls.

Remember me telling you that Me and my mom ended up not having the best relationship and I felt like I didn't have a mom that I could count on when I got older? That haunted me from the second I met my girls. Yes, my mom loved Me, cared about Me, took care of Me when I was sick; however, she was not mentally stable enough to care for Me the way I needed as I got older. I am not saying that she has mental problems, or is crazy, but you might understand what I mean by that a little bit later.

Anyways, I refused to make them feel the way I felt. I refused to treat them the way I was treated. I refused to scream at them one second and act like everything was perfectly fine the next. I refused to play victim and make them feel like the bad guy. I refused to mentally abuse them the way that I was. Yes, I have messed up multiple times. Part of her has come out of Me when I'm disciplining them or I get overwhelmed; however, that is normal. I don't have kids of my own; therefore, I have no clue how to help raise 2 girls, but I do my best every single day, because that's Me.

Topic Nine: Me Again

Me is the person that tries her best every single day to be better than she was the day before. Me is the one who cares so much that it hurts her. Me tries to see the best in people and give them chance after chance because everyone makes mistakes. That's Me on most days at least.

Other days, Me doesn't care. Me is angry and wants to scream, fight, pitch fits and throw things. Me is numb. Me has zero emotion. Me is not bi-polar, Me has Porphyria. "What is Porphyria?" you may ask. That's the underlying condition that I've referred to a couple times; however, I will go over that more, shortly. I promise.

My health condition is not an excuse for my behavior because it is my responsibility to get help. Me taking the steps to get help is what makes Me different from my mom. It's my responsibility to take my anxiety medicine every morning and at night before I go to bed. It's my responsibility to make sure that I eat every couple of hours. It's also my responsibility to avoid smoking, excessive alcohol use, stressful situations, sunlight, specific medications, and hormones.

Topic Ten: Nexplanon

In 2017, I got a birth control implant called Nexplanon. I handled it well for the first couple years, but that eventually changed. The last few months with that implant, things started changing. Me started changing. Everything inside of Me was going to war against itself and my body was it's battleground.

I started getting angry for no reason. I love my husband with all of my heart and we have a wonderful relationship, but I was getting to the point where being in the same room as him made Me angry. That may be normal for a large group of people; however, that was far from normal for Me.

I was confused. I would walk in a room but could not remember why I was there. That was concerning, but what started to get my attention was my stomach pain. I started having slight pain on my right side, but it wasn't severe. I mentioned this to my doctor and we thought that I was constipated. I watched what I ate, took stool softeners and it started clearing up.

A few weeks after that check-in, I had another appointment to have my Nexplanon swapped out. I still didn't feel okay. I still didn't feel like Me. I didn't think too much of it, I thought I was just stressed and my mood was normal for the situation. I talked to my doctor about how I felt and she put Me on Fluoxetine (Prozac) for my anxiety, depression, and mood swings. I started with 10mg, went up to 20mg and now I'm taking 40mg a day. I was finally starting to feel like Me again, but that didn't last very long at all. I should have known. I was finally happy and energetic. I was Me again. But the other Me was not ready to go away. It came back, and this time, it was a little worse.

About a month into my new Nexplanon, I started feeling really sick. I couldn't eat without throwing up. My right side was hurting so bad that it would keep Me up at night. At about 4AM on a Sunday morning, I woke Daniel up and told him that I needed to go to the ER. I thought at first that it may be my gallbladder or appendix, but something inside of Me screamed "It's porphyria." How did I know this?

Topic Eleven: Porphyria

Every woman on my mom's side of the family suffers from this disease, some just experience worse symptoms than others. My great aunt died from it when she was in her early 20s, my mom was hospitalized for approximately 3 months when she was 18 and now at the age of 26, it is trying to ruin my life as well.

The disease I'm referring to is known to some as Porphyria; however, you may have heard it referred to as When I say that "it's known to some as Porphyria" I'm not suggesting that it has another name. It's just so rare and uncommon in the US that only some people know about it. I'm pretty confident that you're not familiar with this diagnosis, but don't worry, I'll fill you in on as much as I know.

Please keep in mind that with Porphyria being as rare as it is, it is difficult to find a lot of information on my condition. I have done quite a bit of research; however, a large majority of the information I'm telling you is from personal experiences. I have included resources that can be used for further questions you may have.

Porphyria is a metabolic disorder that affects the production of porphyrin in the heme of a person's blood. Porphyria is not contagious; however it is genetic and can be passed on from generation to generation. There are multiple types of Porphyria and each type comes with different symptoms. The two most common types are Acute Intermittent Porphyria (AIP) and Porphyria Cutanea Tarda.

While AIP is the type I have and that is most common in my family, my aunt suffers from Porphyria Cutanea Tarda. Both types of Porphyria cause a person to have what's referred to as an attack. Attacks can last from hours to weeks and can vary drastically in severity. In order to have an attack, there must be a trigger. Triggers and symptoms may vary from person to person, as well as from one attack to another.

Acute Intermittent Porphyria Triggers:

-Emotional stress

-Hormones

-Medications

-Sulfa

-Barbiturates

-Sodium Pentothal

-Any anesthetic or numbing medication that contains sulfa as a preservative

-Smoking

-Excessive alcohol use

-Fasting/Dieting

Common Symptoms:

-Mood swings

-Nausea

-Vomiting

-Constipation

-Confusion

-Anxiety

-Depression

-Severe abdominal pain

-Muscle aches

-Typically in hands, legs and feet

-Seizures

Not every trigger will cause an attack and not every attack will be the same, regardless of the triggers. I have smoked, drank alcohol, been under extreme emotional stress, fasted, taken sulfa drugs and had hormone changes. I didn't have an attack for 25 years, at least that I'm fully aware of.

Topic Twelve: Continued Attacks

My first couple attacks only consisted of abdominal pain, constipation, nausea, and vomiting. Each time I would experience these attacks though, they became more severe. It got to the point where I was having all symptoms listed above, as well as chest pain and extreme confusion.

I was back and forth from doctor appointments and the ER, but I still had no answers. I was not constipated. My gallbladder and appendix were fine. Ultrasounds and EKGs were normal. I was in extreme pain. I couldn't remember my birthday. I'm 26 years old. How could I not remember my birthdate?! I have porphyria. That's what isn't normal.

I started getting frustrated and discouraged. I had zero leads for treatment and I was still in tremendous pain. I woke up at 3AM one morning with my stomach killing Me and I couldn't pee. I have had UTIs/kidney problems and this was much different. I had to pee, it just took forever for it to come out. It almost felt like a balloon was about to pop inside of my bladder. I grabbed my phone and started researching.

Topic Thirteen: What's My Trigger?

I wasn't smoking, drinking, stressed, or taking medications that should be avoided. There had to be something causing my attacks and I was determined to figure it out. About 30 minutes later, I found the answer to my biggest question, "What's my trigger?!" Hormones.

Hormones were the only thing left on my list. A little more digging and there it was on WebMD:

"Who should not take Nexplanon Implant?"

"The following conditions are contraindicated with this drug. Check with your physician if you have any of the following conditions:"

-breast cancer

-diabetes

-excessive fat in the blood

-porphyria

-overweight

Here I was, ecstatic, waking Daniel up at 3:30AM screaming "I figured it out! It's my birth control! I can get it taken out! I'm going to live!" First thing the next morning, I called my doctor and scheduled an appointment to have the Nexplanon Implant removed. I got it taken out and I thought I was good to go. That's what I get for thinking.

Topic Fourteen: Avoiding Hormones

Now that I'm off of Nexplanon, I have a lot to think about. A very large majority of effective birth controls contain hormones, which I have to avoid. On the other hand, getting pregnant can be fatal for Me and/or the child; therefore, I have to avoid that as well.

Now what's my option? Are you thinking "Wear a rubber" or "Just don't have sex"? Well, first off, having a blow out with a rubber at 1AM and running to Wal-Mart for Plan B isn't really an option. Not just because we're in the middle of a pandemic and Wal-Mart closes at 8:30, but because I have to avoid hormones. Plan B is full of hormones that can be just as dangerous as if I were to get pregnant.

Yes, the abstinence option is still there: however, I'm 26, married, in love with my husband, and find him to be very attractive. This option may last a week or so, but I guarantee you that it won't last until I get treatment. I have one option left now. Getting my tubes tied.

Topic Fifteen: Tubal Ligation

When performing a tubal ligation, the patient is given an anesthetic and put to sleep. This can be dangerous for a healthy person; however, it is extremely unsafe for a person with porphyria, unless a specific anesthetic is given. Most anesthetics contain Sulfa as a preservative and that is one medication that has to be avoided with my condition. If one of the medications are administered prior to surgery, an attack will be fully prepared to greet the doctor before they even make their first incision.

After numerous conversations with Daniel, going through the pros and cons, we've made a decision. I met with an OB/GYN Surgeon and set a date. I would have to meet with an anesthesiologist prior to my surgery and ensure that they were fully aware of my condition; however, my OB/GYN surgeon was comfortable performing the surgery.

Topic Sixteen: Leading Up to My Tubal

I was scheduled for a pre-op appointment on 12/15/2020 and scheduled to have my surgery at 7:30AM on 01/06/2021. I took a week of work. I was fully prepared to have this done. When I first made my appointment, I felt fine. I really did think getting rid of my birth control would help Me. I was wrong though. Weeks leading up to my surgery, I started feeling bad again. I started getting angry for no reason. I was confused. I was numb. My belly hurt. My legs hurt. My back hurt. I felt nothing like Me used to feel. Physically or mentally.

One Saturday, I had the day off work and I had a lot to do. I needed to split wood for the winter and I also got it in my mind to rearrange our bedroom. I was carrying boxes downstairs and with each trip, my legs felt weaker and weaker. Just a few trips left. Box in my arms, I made it down 9 steps, and I only had one left to go. My leg gave out, I dropped the box and fell to the floor. I knew something was wrong, but I kept going. I took it kind of easy after that, but I didn't stop until I was finished.

The next day I relaxed and stayed home all day. I felt okay, but deep down, I knew that I wasn't. I was far from the normal Me. I ate supper and threw up shortly after. I didn't think too much about it. I just thought it was what I ate. I went to bed pretty early that night and woke up the next morning at around 7AM.

I had to be at work at 10AM which meant I had to leave by 9AM. My niece stayed the weekend with us and I had to take her home on my way to work. No big deal. I picked out my clothes for the day, and started to drink my coffee, but I was not okay. Something was very wrong.

Topic Seventeen: That Morning

I went to the bathroom, sat down on the toilet, and called for Daniel. As soon as he walked in the room, all I could really say was "I don't feel good." He responded "Let's go lay down for a minute, it might help." I argued "No! I don't feel good. I need a doctor now!" He must've agreed. He grabbed Me a pair of pants, a sweater, and a pair of shoes. The thing was though, I didn't know how to put my pants on. Again, I am 26 years old. How do I not know how to put my pants on?!

He put them on Me, helped Me with my shoes, sweater and helped Me to my dad's bed. I remember walking past my niece and my dad, and laying on the bed. They both walked up to check on Me but I couldn't really respond. Tears were rolling down my cheeks. My body was so uncomfortable. All I could do was rock back and forth. Until I had my 1st episode.

I don't remember much except I couldn't stop shaking. My entire body would not stop moving for what felt like a really long time. Before I knew it, First Responders came barging in and they were coming right for Me. I remember them asking Me lots of questions and Me not liking that they were there; however, I don't know what they asked and how I responded.

They put Me on a stretcher and hauled Me outside. I had absolutely no idea where I was. I remember them telling Me that I was at home, but I was convinced that they were wrong. They were right though. I was at home! I even remember pitching a minor fit because I was about to pee in my britches. I was also sane enough to ensure them that I wasn't on drugs.

Topic Eighteen: Sunup to Sun Down

The ride to the emergency room took what felt like forever. I had to pee so bad and the EMS driver was driving like he was on Need for Speed Tokyo Drift. I'm sure that's how they're supposed to drive in situations like mine, and I'm also confident that he probably wasn't driving that crazy now that I think about it. What did I know at the time though? I barely even knew my name!

We made it to the hospital and I thought I was okay until I'm laying in the hallway on a stretcher. My body starts convulsing and all I can do is scream "Somebody help Me!!" I was taken back to a room and I finally got to pee. Ah! What a relief! It would've been absolutely amazing if that's all that wrong with Me, but my full bladder was far from the culprit.

The next little bit is a blur. Doctors came in to ask questions. Daniel walked in and I kept saying he was the cute one. True love never disappears, I suppose. Some gentleman came in to take Me for a CT scan of my brain. He asked if I was pregnant and I responded ."No. If I get pregnant it can kill Me!" We argued about that for a while because he thought I was worried about the CT Scan killing Me. That was not the case at all though. I was worried about Me killing Me. Not because I'm psycho or suicidal, but because I have a very rare life threatening disease.

I guess I fell asleep after that because when I got to the ER, the sun was just coming up and the next thing I remember, it was going down when I was escorted to my room. A lady met Me in the room with a really fancy machine and a ton of sticky pads for my EEG. They wanted to scan my brain to check for epilepsy and seizure like activity to explain my convulsions. I'm not sure how long that took, but I am so thankful that Daniel cut 19 inches off of my hair about 3 weeks prior. That was a mess!

After I had a new hair do, and was all hooked up to the machine, the nurse brought Me supper. I was starving! When I got on the ambulance, my blood sugar was 48 and when I got the chance, I ate like my life depended on it. Mostly because it actually did, I suppose.

Topic Nineteen: Results

With CoVid cases on the rise, visitation is limited; therefore, Daniel had to leave around 8:30PM. As far as I can remember, I was doing okay before and after he left. I was so out of it, it's kind of hard to say for sure. I believe I slept most of the night, except for having to wake up and pee. I was beginning to really like that bedside commode!

I woke up to a very special lady the next morning. Her voice and beautiful face brought joy to my heart and peace to my mind. I knew I was safe with her there. We talked for a few minutes and before I knew it, I could feel my eyes twitching and my entire body began to shake uncontrollably. I wasn't okay, but she was right there by my side. I knew I was going to be okay.

Shortly after my first few episodes, she went back to work and it was time for my hair appointment. A very sweet lady started taking the sticky pads out of my hair one by one. I love having my hair played with; therefore, I enjoyed every minute of it. After all pads were removed and the machine was unhooked, my doctor came in to inform Me that there were no signs of epilepsy and no signs of seizure-like activity in my brain. That was great news, but he was still going to order an MRI, just to be safe, before he sent Me home.

Topic Twenty: Convincing the Doctor

It is very good that my brain is not triggering my episodes, but at the same time it's kind of bad. They don't understand what's causing my episodes and they don't really have the time to figure it out. I know. It was porphyria. It wasn't as easy to convince him though, because he was one of the many people that had to ask "Porphyria? What's that?"

His lack of knowledge is not his fault and he is definitely not the first health care professional that is unfamiliar with this disease. Now it is my responsibility to change that. I want to be Me and stay Me without the fear of my next episode.

Hours later with no MRI, no results, and multiple episodes, I decided to go home. Whether I was convulsing, or partially paralized and unable to move for half an episode of Gunsmoke, there was nothing that they could do. My porphyria diagnosis was real and I had the lab results to prove it; however, my diagnosis was not listed on my medical records at the ER and they haven't received them from my primary at the time.

Topic Twenty One: Going Home

After some time, I was discharged. That did not mean I was cured. It just meant that I would rather have an episode with Daniel, my dad, and 5 dogs than to have one in a strange room with nurses that have far too much on their plate right now and need a break.

I made it home, thanks to my wonderful husband, and I made it through the night without having an episode, which was a blessing. I called my doctor first thing the next morning to follow up from my hospital visit. I left a message and she returned my call a few hours later. She had lots of questions, as well as an order that would change my life tremendously for the next month.

"You are to have an MRI, see a neurologist, a hematologist, and a gastrologist before I release you to go back to work. If you need to go anywhere, Hubby is to take you. You are not to drive until you are cleared from all doctors, or you go one month without an episode."

Topic Twenty Two: Making Changes

Of course, that broke Me. I absolutely love my job. Being able to drive to work and drive my buddy around makes my day. I can't do that now, and for all I know I may never be able to drive again.

I let my HR Department at work know, and I made arrangements for any trips I needed to make. Now I wait. I wait for the doctors to call Me. I wait for the next episode and pray that it doesn't come. About a week later, I received a phone call and scheduled an appointment for an MRI.

I have never had an MRI of my brain before and I had no idea what to expect. I wore comfy clothes, no jewelry and made sure there was no metal in my clothes. When I got there, Daniel wasn't able to go in with Me due to CoVid restrictions. I walked in, filled out papers, and waited. I waited for over an hour, but I'm not complaining. That gave me plenty of time to work on my boggin. I haven't been able to work and I picked up crocheting to occupy my free time.

Topic Twenty Three: Ready for Take Off

Finally, I was called back into a room where I was asked questions and ordered to change into scrubs. I swapped my clothes out, took off my glasses and walked into a very cold room with a gigantic machine. I climbed up on the table, laid down, and was covered with a warm blanket and given ear muffs. A piece of equipment was placed over my head and the table slid backwards into the tunnel. I felt like a pilot with my giant goggles and helmet. With all of the noises around my head, I was ready for take off.

I laid on the table for a while listening to crazy noises buzz around Me. Considering that I have never had an MRI before, I wasn't familiar with those sounds. Part of Me was thinking that it was supposed to sound that way, while the other part of Me thought it was planned. I would get comfortable and relaxed and out of nowhere, a loud buzzing, beeping, dial up sound would start and scare the daylights outta Me. I really started to believe that they were intentionally making those noises to see how my brain would react to different situations.

That was just my mind trying to make sense of the noises. That is one downfall that I definitely have. I create a reason for everything. If something happens and I don't have a reason for it, I will create one to feel more comfortable with the situation. After my trip through the MRI, I changed my clothes and walked out to meet Daniel.

Topic Twenty Four: Back to Normal

The next day, I waited on a call from my doctor and she had good news. My MRI was normal which meant when I went one month episode free, my life could start being normal again!

Over the past month, I have taken it easy. Waiting on Drs appointments and trying my absolute hardest to avoid triggers and an episode. Two days left, and I've made it. I have my release form to go back to work and I can't wait. I even get to drive again!

Topic Twenty Five: Not All About Me

While all of the information I've given you so far has been about Me, and about how the real Me has been affected, it's not just about Me. No, this has not been an easy part of my life; however, it has affected a lot more people than just Me. My dad had to go through this condition with my mom, and now he has to go through it with Me as well. My girls aren't fully aware of my condition as I don't want to worry them, especially until I find help. My employer has had to make extensive changes for my clients. My in-laws have taken Me under their wing and always take the time to make sure I'm okay, and my husband has had to adjust to the different Me's more than I did.

The five years that my husband has known Me, I've mostly been the same, real Me. That Me has changed quite a bit and he has had to adapt. He expects Me to be happy, outgoing, helpful, and silly; however, he has started to prepare himself for when the sick part of Me comes out. He has learned to be more patient, understanding, and helpful.

I am so used to being the one that takes care of everyone, but now I need help taking care of Me. My family is there for Me when I need them, even though asking hasn't always been easy. I am so thankful to have the support system that I have. I want my family, blood and marriage, as well as everyone that I have worked with since July 2020, to know how much I appreciate all of you. I could not have made it this far without y'all!

Topic Twenty Six: Anticipation

12:55PM on a Thursday. It's raining and cold, so I suppose sitting in a doctor's office isn't the worst way to spend the afternoon. I do hate waiting though. I'm sure most of you can relate to that. The anticipation. Staring at the walls and wondering "why did they pick this furniture to go with that paint on the wall? It almost matches completely. I wonder if all of the furniture was pushed against the wall, could I tell the placement of the furniture, or would it all blend together to create one extra tall chair?

These are just random thoughts that pop in my head to keep Me from thinking about the real reason I'm here. Although porphyria is a life threatening disease, my life is not being threatened right this very second. That I'm thankful for, and shouldn't be worried. I am though. I'm worried because this appointment will most likely go like all the others. I'm not having an attack at the moment; therefore, my labs/tests will most likely come back normal. Their response will probably be "I'm not familiar with porphyria, but everything was normal. You'll be okay."

Will I though? Will I truly be okay? I haven't had a major episode in over a month, so I should be fine. I can't trust that though. I didn't have an episode, that I was aware of, for over 25 years and within 6 months I've had almost a dozen. Just like life, porphyria will pop up and get my attention at any second. No warning, no knock, it just barges right in and makes itself at home. I will never be completely comfortable and safe with myself again. At least not until I have confidence that someone cares and is knowledgeable enough to help Me. At that point, I will be able to relax and feel like the same Me again.

Topic Twenty Seven: Hematologist

From what I've gathered, hematology is the study of blood. It is a process used to diagnose and better understand blood and diseases in the blood. No, I do not have a transmittable disease; however, porphyria does affect a person's blood, as I explained earlier.

To, hopefully, get more answers about my disease, I was referred to a hematologist. Considering I was referred to him for treatment, I am trying my best to trust that he can help. I have worried and thought about the negative, now it's time to think about the positive. I haven't seen him yet; therefore, I have to try and stay hopeful. Otherwise, I'm just wasting my time.

That's the thing though, aside from my primary doctor, any health care professional that I reached out to for help has no idea what is wrong with Me and how to fix it. That has to change! I am not the only one in this world that is struggling with porphyria and looking for answers! Dr. Blood Buddy, I am trusting you, please don't let Me down.

Almost 2 hours later and we made zero progress. Dr Blood (I no longer consider him a buddy) basically said there's nothing that can be done, there's no treatment for my condition. I have to avoid triggers and just deal with it. If I have a severe attack, I can call their office to be admitted to the Emergency Room. However, he cannot guarantee that hematin will be administered as it is up to the ER doctor, not him. I don't understand! If there is a treatment that helps, why don't they use it?!

I get that I am supposed to avoid triggers and trust Me, I'm doing my best. How can I avoid hormones though?! I CAN'T AND I'M JUST SUPPOSED TO DEAL WITH IT!!!

Topic Twenty Eight: Neurologist

Here we go again. 7:45AM on a Friday. Just another doctor's appointment that will probably go like all the others. I know I need to be positive and optimistic, but how am I supposed to be hopeful when the other side of Me is starting to come out? My stomach hurts, my body is uncomfortable and I am numb, angry, tired, exhausted and fed up. I'm not the same Me as I was a couple of days ago.

This appointment went different than others. He listened. He responded. For once, he did not tell Me that there was nothing he could do. Yes, he did tell me that my life long condition is incurable; however, he didn't dismiss Me. He was thorough and polite. He asked lots of questions, and pushed past my anger and disappointment when I stated "I have Porphyria. I've been to my primary doctor, the ER, a hematologist, and now I'm here. I always give each doctor the same information and they just say there's nothing that can be done. I was referred to come here, so here I am. I don't know why I'm supposed to be here though. I have Porphyria and I was having tremors and non-epelyptic seizures."

He didn't get discouraged and give up, he examined Me and said that my reflexes are overactive in my legs, but that's just Me and he's not concerned about other health problems. That was nice to hear, because he basically said I was normal for Me. I think he truly understood Me. Thank you Dr. Brain Buddy!

He did tell Me something that would put a damper on anybody's day though. While he didn't demand that I not work or drive, he highly suggested that I apply for disability and stop driving. How am I supposed to do that? I absolutely love my job! For the first time in my life, I actually look forward to going to work the next day. My clients depend on Me. I can't just abandon them! What do I do now?!

Topic Twenty Nine: Now I Wait and Pray

I wait. I wait for my episodes to start and I pray that they'll go away soon. That's it. Instead of worrying and waiting, I need to pray. Worrying will not fix anything or make Me feel any better. Praying is the answer right now. I need positivity, faith, and help. God gave Me my husband and has more than blessed Me. He will help Me through this too!

"Dear Jesus, my heavenly Father, thank you so much for everything that you have done for Me and my family. Thank you for being there with and for us, Lord. Please forgive Me for all of my sins and trespasses and Lord, I ask that you continue to lead Me on the path I'm supposed to be on. Please continue to walk by my side and help Me through all obstacles that I come upon. Lord, I also ask that you place a warm and comforting hand on anyone and everyone that is struggling right now. Time's are bad, Lord, and we need you now almost more than ever. I am so thankful for you, Lord. In Jesus' name I pray, Amen."

Topic Thirty: Answered Prayers

Last week, I came to my first hematology appointment. I was highly discouraged as he said that there was nothing that could be done and he didn't feel a need to see Me again. He drew blood and I went home. I prayed. I prayed for help, strength and direction, and then I waited.

A few days after that appointment, my labs came back and I received a phone call. I am now instructed to take iron supplements, multivitamins for women over 50 and receive B12 injections every 4 weeks.

While these steps will not cure porphyria, they will help bring my levels back up, which should help tremendously in making Me feel better and that's all I can ask for. That's all I've wanted! I understand that porphyria is a chronic condition, meaning it will last forever and there is no treatment for it; however, I just want to be able to function and feel like Me used to.

Topic Thirty One: Salpingectomy

Since the day I had my Nexplanon implant removed, Me and Daniel decided that I would have my tubes tied. I mentioned earlier that I had met with an OB/GYN Surgeon and was scheduled for surgery, but plans had to change. Once I was released for surgery by my doctor, I scheduled another appointment. This time, I was scheduled to have a Salpingectomy.

Like having your tubes tied, a Bilateral Salpingectomy completely reduced the risk for pregnancy; however, it has multiple other benefits as well. With this procedure, both fallopian tubes are completely removed. That being said, it is impossible to become pregnant or have a tubal pregnancy, and the risk of ovarian cancer in the future is greatly reduced.

Before my surgery I had to give labs, take a pregnancy test, have a pelvic exam and a pap smear. I also had to stop eating at 12AM the morning of, and only drink clear liquids from 12AM to 8AM. Gatorade became my best friend that morning. Not only does it keep you hydrated, it also has carbs!

The morning of 02/17/2021, I woke up, got dressed in my comfiest outfit (insulated leggings, a button up plaid shirt that's about 3 sizes too big, my slip proof Mario socks, a pair of crocs and my grey boggin that I got for Christmas) and prepared myself for surgery. Once I got to the hospital, prep for surgery began. Change into a gown, start an IV, take my glasses off, get the leg massager thingies that reduce the risk for blood clots, have a heater placed in my gown to keep Me warm, and medicine. Lots of medicine and lots of doctors that got to hear my story over and over again.

I remember giving Daniel a kiss, and being rolled away to the operating room. After that, everything was a blur until I woke up in recovery with 2 nurses staring at me. Strangely enough, all I could do was smile, until I got woke up enough to start talking. I have 15 tattoos and the nurses got to hear the story behind just about every single one of them. I suppose it's safe to say that even with lots of medicine, I was the real Me that day.

Topic Thirty Two: Recovery

After my surgery, I had to take a week off of work, avoid lifting anything over 15lbs for 2 weeks, avoid sex for 2 weeks, and carry around an ice pack stuffed in my shirt for about 4 days to help with the pain. Thankfully, the pain was pretty tolerable and I was able to continue my daily routine shortly after.

I felt fine after surgery. I felt like Me. My post-op appointment went great and I was able to return to my normal schedule after just 2 weeks. I continued to feel like Me. Happy, energetic, and goofy, but that didn't last long. Although the Salpingectomy will help reduce more severe attacks in the future, it will not eliminate my attacks all together.

Topic Thirty Three: It Must Get Worse

I started getting angry for no reason, having pain all over my body, getting confused, and wondering if I would ever stop feeling like a failure. Typically, these symptoms last for a few days to a week, but this time, they lasted for about three weeks. I really started to wonder if I was ever going to be the normal Me again. Thankfully, I had a few really good days filled with excitement, energy and the desire to take on the world.

Once again, that feeling didn't last very long. Here I am today feeling like I am a huge disappointment. I didn't clean the house before work. I tried doing yard work, said "screw it" and gave up. I left work early because I felt like I was going to break down at any moment.

I woke up the next morning feeling pretty good, considering I was a basket case the day before. I straightened up the house, swept, did some laundry, and then headed off to work. When I arrived at work, I still felt okay for about 20 minutes, and then the pain hit. I barely had any appetite for my sausage biscuit. My tummy started throbbing and I was feeling nauseous, but I tried to push past it. I drove about 10 miles and with each mile, I was praying that I could make it back to my destination before I felt any worse.

When I arrived back at my destination with my client, I went in, sat on the couch and without a blink of an eye, I started having an attack. A severe attack. Extreme belly pain, weakness, a hot and tingly sensation over my whole body (not the good kind either), nausea and mild tremors. I was still at work at this point and I had to do absolutely everything in my power to stay calm.

I called Daniel and told him to come get Me. I sent a text asking when coverage may be there so I could leave quietly. Thankfully, I was still competent at this point; however, my symptoms were getting worse and worse. An ambulance was called and Daniel arrived. So much for not causing a scene. I made it to the front steps to sit down, but that was as far as I could make it. I tried standing up to walk with EMTs to keep them from having to carry Me over a crooked, broken sidewalk and 9 steps that are only big enough for one person on a step at each time. Unfortunately, that did not go as planned. I got very weak and my legs gave out. Needless to say, I was transported in a rolly chair that's similar to a furniture dolly. That was terrifying!

Topic Thirty Four: Before it Gets Better

I was loaded on to the ambulance, an IV was started, my vitals were checked, and we were on our way. My blood sugar was 64 and my blood pressure was 156/98. Then I had my first episode for this attack. Shaking uncontrollably from head to toe, able to hear, but not always able to respond. This attack was much worse than I expected it would be. But as they say, all things must get worse before they get better.

I arrived at the ER, absolutely miserable. Thankfully, I have all of my emergency info on my FitBit in case an attack like this ever happens. The nurse went through my watch and made notes of important details. Multiple nurses asked multiple questions and I pointed to my "American Porphyria Foundation I am a Porphyria Warrior" bracelet on my left arm. For each set of questions, I made the same gesture as I wasn't really able to talk. A doctor came up to my bedside to ask questions. She asked what my symptoms and possible trigger was. I didn't think much about her question at the time; therefore, I pointed to my bracelet. Unlike all other responses I receive when mentioning my condition, she said "Yea, I know about Porphyria. What are your symptoms and what do you think your triggers were for this attack."

I couldn't believe it. My doctor, out of all doctors in the ER, was familiar with Porphyria and was more than willing to help Me on my path to recovery. She called a hematologist for further assistance, and I was admitted to the hospital. I was absolutely dreading spending another night in a hospital bed; however, I was more than happy to if it meant feeling better. I was transported up to my room on the top floor of the hospital, but unfortunately, I was too busy puking my guts out to enjoy the initial view.

Medicines were started and they informed Me that I would have to stay in the hospital to receive Hemin Infusions. This process would take 4 days, as Hemin is given every 24 hours and comes in 4 doses of 4oz packages. Not only did the medication have to be special ordered and emergency dropped at the hospital, but each dose cost $60,000.

After 4 days in the hospital, multiple IV lines, doctors, nurses and CNAs coming in and out, I finally got to go home. Was I better? Yes and no. I was able to function much better than 4 days prior; however, I am not cured. Mentions of hormone therapy and continuous medication to treat my symptoms were prescribed. That's not good enough though.

Topic Thirty Five : Her Side of the Story

My mom has been aware of porphyria ever since she was young, as it has been passed down from generation to generation. When her grandmother was 8 years old, her mom got very sick. At this time, doctors would visit people at their homes instead of having offices. The local family doctor came to check on my great-great-grandmother and gave her medication to cure her sickness. The next day, she passed away.

Years later, my great-aunt started getting sick. Throwing up, severe abdominal pain, etc. My great-grandmother called the same local family doctor that was around when her mother died. Through the years, our condition became slightly more familiar to this particular doctor. When my great-aunt became ill, he was reluctant to treat her; considering that the medicine he gave my great-great-grandmother had a cause in her death.

My mom remembers taking her books to read to keep her occupied. She couldn't get out of bed and her condition was only getting worse and worse. Shortly after she started getting sick, she passed away as well.

When my mom was about 18, she started experiencing symptoms. She was in extreme pain in her lower belly and the doctors assumed she had an infection in her ovaries. They prescribed barbiturates for the assumed infection and shortly after, my mom became hospitalized for 3 months. She couldn't eat without throwing up. She had lost so much weight that the knot in her stomach was actually her spine. She had to learn how to walk, talk, and eat again.

Topic Thirty Six: Realising

For years, Me and my mom have struggled to build our relationship. While we both have the same disease, we are still very different and that caused quite a few problems between us.

After months of not talking to her, I finally put my feelings to the side and listened to what she had to say about how she felt. She felt just like Me. Happy, angry, independent, sad, energetic, and exhausted all at the same time. When she was my age, porphyria was much more rare than it is now; therefore, there was absolutely zero treatment and her fear of having an attack kept her from seeking medicine for her emotional swings. That is the biggest part that I didn't understand.

I didn't understand why she would say that she doesn't have a problem. I didn't understand why she wouldn't go to the doctor or get help. I didn't understand why one day she would say she loves and misses Me and the next she would tell Me I was the reason she drank from the time she woke up to the time she went to bed.

I thought she was bi-polar and just an angry person. She always said that she had porphyria, but she only said that she has to be careful what medications she takes. She was unaware of the other triggers, and never really explained the attacks. Maybe she didn't even know what was happening. Now that Me has started changing tremendously, I actually understand her quite a bit more. A part of Me slightly regrets my disregard for her condition. That part of Me hopes that together, we can change the world for others suffering with Porphyria. We can't do it alone though.

Topic Thirty Five: Something Has to Change

I know and completely understand that there are more conditions that are untreatable and are worse than porphyria. No matter what that condition is, something has to change! A large majority of conditions have enough treatment options to keep someone comfortable for the time being. Why can't some of the funds and time be put into research about rare and/or untreatable conditions? Has anyone ever thought that maybe these conditions are extremely common, people just aren't educated enough to determine the real cause?

That's the problem nowadays. Technology has evolved tremendously to allow more answers to the unknown; however, people are so wound up in technology that they can't take the time to spend with someone to try and help them. People are so self absorbed and distracted that they can't care for people the way they used to.

I'm not saying that I'm perfect and not part of that population. I'm saying that we all need to change. People are fighting for so much right now. Let's add something else to that list that matters! Did you know anything about porphyria before you read this? Have you ever even heard the word? Exactly! Now help me change that for the world! We need help!

Please visit https://porphyriafoundation.org for more information and for an opportunity to help fund research, and a possible cure, for those suffering from Porphyria

Resources:

https://www.webmd.com/drugs/2/drug-156597/nexplanon-subdermal/details/list-contraindications

https://rarediseases.info.nih.gov/diseases/5732/acute-intermittent-porphyria

https://porphyriafoundation.org/for-patients/types-of-porphyria/aip/