Feb 27th 2018...
The date has changed, but that’s basically the only thing that ever does change with me.
It’s always the same things. .
Same daily routine, same brave face and overly bubbly and optimistic attitude, topped off with a pretty face and smile.
All while beneath the surface I’m trapped inside of my own version of hell.
I’m looking at the same four walls, watching the same shows on hgtv, eating the same snacks, feeling the same pains & hearing the same annoying neighbors making all kinds of noises around my house.
Really, that’s what this is all about.
About how for the last 10 years, I have been in hell. My crimes? Trying to save the world in the name of God and all things pure.
People fear death because they’re afraid of the unknown. Not me, though.
What scares me is repeating this same life again.
Another whopping 125 years of this shitty place, forced to be trapped doing the same “nothing” every day. .THAT scares me.
The highest level of torture is what you could compare my life to.
I have no one to interact with and no means to make money. After all, you kind of have to have a functioning body and energy to work. Things that I wasn’t so fortunate to have.
Crohns Disease, Endometriosis and a condition called “POTS” took my health when I was just fifteen years old. I remember the day it happened like it was just yesterday.
I ran track and had a track meet with our rival school in freshman year and after completing a lap around the track to warm up. I headed towards the stairs to get a drink from the water fountain when all of the sudden my heart started pounding in a way it had never done before. THUMP THUMP THUMP THUMP, I could hear my pulse echoing throughout my ears and my vision started to close in on me, then, in a split second, I was out like a light.
I woke up to my coaches and nurses looking down at me, calling my name and putting cold rags on my face. Then it hit me..”OMG! The race!” I quickly screamed as I tried to swiftly get up. My coaches told me that I was definitely not going to be running that relay and that my mom was on the way to come pick me up.
Disheartened, I slowly got back up and walked to the bleachers to sit down while I waited on my mom, but as I sat there, I could tell something was different. I didn’t feel the same anymore, as if someone had unplugged my cord from the outlet.
Things were never the same since that day.
After some months and some tests, they basically diagnosed me with Positional Orthostatic Tachycardia Syndrome, which means my blood pressure drops or increases in different positions, causing the pass out episodes. There’s nothing you can really do for it, but stay hydrated and learn when it’s about to happen and sit down. At least, that’s all the helpful advice the doctors had for me, anyways.
Now, I know that my triggers are heat, standing for long periods of time and panic. I’ve learned to limit my baths to a maximum of seven minutes and to not dilly-dally in the shower. Which sucks if you’re someone who loves a good relaxing hot bath or shower.
During the same time as my POTS diagnoses, I started having trouble eating without pain and then problems with having a bowel movement. Not long after the onset of those symptoms I started getting crazy fatigue and nausea. It then got to the point where I couldn’t focus on even function on a normal level.
Somehow I got through it, though.
At some point, I got a pediatric GI doctor who treated me like one of his own children. He was kind, concerned and genuinely cared about my health and well-being. He scheduled a scope and I had to be admitted the night before to do a “clean out” since I had been impacted from not having a bowel movement for so long. They did the scope and then the verdict came back that I had Crohns Disease. I wasn’t too crazy shocked because my mom has it and it’s genetic, but no one wants to be diagnosed with health problems. My mother sat crying hysterically in this little recliner in my hospital room and I knew then that I had to be strong, brave and fearless throughout this whole journey for her.
I tried to do this thing where I pretended like nothing was wrong and that I was fine. I recommend not doing that, because then it just sits until you break.
I was a senior by the time things really started to get bad. I missed a lot of school and the teachers really didn’t care what I had going on at the time, so I still had loads of homework on top of everything else. I quickly learned how big of an impact stress has on Crohns Disease. Nonetheless, I pushed through it all and managed to graduate and that was a huge relief of stress.
Fast forward a few months and I’m being cycled through all these different medications to try and get my Crohns into remission. Nothing was successful until I got put on Remicade infusions every four weeks along with Methotrexate injections every week. These got my through high school and then my body built up antibodies to it and I could no longer use that particular infusion. That sucked because it took so long to finally get a working treatment and then it just fizzled out.
I’m now eighteen going on nineteen and having to transfer to an adult GI doctor, just when I had gotten established with my other one. The doctors warned me that the adult world for healthcare is nothing like it is for children and they weren’t kidding.
I went through every gastrointestinal group in Knoxville and they all wanted to tell me that I either “didn’t have Crohns “ or that “it’s all in my head”. It wasn’t either of those, they just weren’t interested in doing the work that came along with me. Simple as that. Then, there’s apparently some code of ethics where if you’ve seen one person in the same group, you can’t see any other doctor there.
I was having the worst flares of my life and no one was willing to help me. Instead, the hospital emergency room staff became very familiar with me.
I landed with this one doctor in a town over from me and we ended up reaching out to him and telling them how bloated and in pain I was and I got direct admitted there.
These people put me on every known drug that is supposed to flush you out and little to nothing was moving.
After three days of heavyweight drugs with no success, a surgeon came in and agreed to do a laparoscopic exploratory surgery, where he would find hardened stool and Endometriosis.
What really irked me the most about the whole process was that they had me opened up, had an OBGYN surgeon come in to verify that it was indeed Endometriosis and then proceeded to tell my surgeon “I’m not his patient and unless I transfer to his care, he wasn’t going to remove it” and then told him to glue me up.
I ended up calling my pediatric gastrointestinal doctor and telling him what had gone on and he graciously said he would do a stool removal procedure.
Before I had the procedure, I looked a good six months pregnant, I was that bloated. Afterwards, I felt like a whole new person!
The next day, a female GI doctor came to see me and basically told me that I have a “slow colon” and not really any reasoning as to why, other than that I wasn’t eating right or drinking right. Honestly, it felt like a scolding more than anything and I didn’t even know what I was being scolded for.
My time feeling relief and somewhat normal was incredibly short lived.
Not long after being released from that escapade, I was set to see a Endometriosis specialist. I had been constantly bleeding and had previously gone to three different doctors who refused to believe I had Endometriosis because I was so young. Mind you, I had written proof from the exploratory procedure that Endometriosis was, in fact, confirmed. That still wasn’t enough for the doctors to take my plea for help seriously enough to go in and check for themselves. I was made to sit and suffer due to the negligence, yes, negligence, of doctors thinking they know everything. I laid in bed , curled up and crying because doctors thought they knew everything.
Finally, the date came for the specialist, got my surgery scheduled, had the surgery and just as before, there was “old” stage three Endometriosis.
Everything should be gravy from this point on. .or so I thought.
I started into college and ended up having to take these ridiculous “pre-classes” before I could take any of my core classes for my major! It was really just a huge money scheme and a waste of time. I was a communications and media major.
I did get to take a sociology course and I passed it with flying colors, but the math and this other pointless class were giving me a hard time.
That aside, I loved feeling like I was “normal”. I loved waking up early, being around my peers and having a “normal” routine. I craved that.
I even had two jobs as well! I was a waitress at a cute restaurant and a greeter at Hallmark. I loved being in that routine.
All good things come to an end, though and my life was no exception.
At the end of my first semester, I started having bad fatigue and pain again. The cycle was restarting.
I got an appointment with a GI, had another scope done along with more labs and tests. I had ulcers everywhere and I had to come off the methotrexate injections because it was causing adverse effects.
After we had exhausted all our medical options, the doctors started to just say things like “I don’t have anything left to offer as a solution “ and “I can’t do anything else”.
So I dealt with the pain, had to drop out of school and quit my jobs because my body was so worn out.
That was at the end of 2012 and beginning of 2013.
While all this was going on, I started noticing that I no longer had friends. I’d always heard that when you’re at your lowest you see your real friends and I did. I had none.
I no longer felt normal and a lot of times I didn’t even feel alive.
I mean, my life kind of just ended. I stayed at home in bed, to weak to go anywhere or I was in the emergency room. Everyday I stared at the walls, crying and suffering, feeling alone. I started being able to pick up on all my neighbors routines and that’s when I really felt useless.
All my peers were getting married and partying and I was getting labs drawn.
I clung to my faith because that was all that I had. I had my Angels and God, no matter what.
Weeks went by and I got a call about going up to the Cleveland Clinic for evaluation and, of course, I planned to be there ASAP.
I had initially been brought there to study me for POTS, but ended up seeing GI and an OBGYN.
Which was a huge blessing in the end.
Not long into this trip, we realized it was going to take quite some time before the scores had finished their full work up on me and even longer for a treatment plan. We made the decision to go ahead and get me an apartment in Cleveland, so I could go to my appointments.
This was about to me my first time living on my own, in Cleveland, Ohio, at twenty three, with no family around. I’m excited, but terrified at the same time. Finally, something different.
My father had drove up to meet me in Cleveland so we could move into my apartment, which was an Embassy Suits converted to apartments and was already furnished. The rent was $1700 a month and my mom, sister and father all helped pay for my rent and basic needs.
I had applied for disability, but because of my age, they made me go through an insane amount of hoops in order to get a court date.
So now, I’m here miles away from my mom and having to face these appointments and new places alone.
I walked everywhere it took the bus, so I learned the routes well. It was an actual city and a total culture shock from Tennessee.
Then the snow hit and I was walking to these places on my own, in the cold. I really found out how strong I was at that point.
After getting settled in, I had gotten another Endometriosis surgery scheduled and my mom came up for that. It was the greatest reunion ever.
I had an appointment with a motility doctor a week after my Endometriosis surgery and she had scheduled her own set of special tests for the following week.
The week and the tests came and went and finally, I heard back and was asked if I could come in to meet with her. I eagerly agreed and on the way I went.
I get to the appointment and she tells me that this one ring test she had done came back showing all the rings moved through my small bowel as they should, but once they hit my colon, they all stopped. She told me she wanted to have me meet with her surgeon because it was clear that my colon was no longer functioning properly.
I’m a nervous wreck at this point. I called my mom, whimpering with my voice cracking as I tried to get what I was trying to say out. Now she’s freaking out.
I go to this chapel inside the Clinic and just cry for hours. Finally, I pull myself together enough to walk to the bus stop and catch the bus.
“I can’t catch a break” I thought to myself. It proved to be true, though. Since that day when I passed out, I hadn’t gotten a break. Every time I thought I was back on track and tried to pick my life back up and put it all back together, something else would happen with my health.
Three glacially slow days later, I have my appointment with my surgeon. She’s thin, tall, dirty blonde hair and a “no nonsense” air about her. She introduces herself and proceeded to sit down and review all of my images and results. She lets out a sigh and turns to me with a stern look on her face and says “I’ve gotta take the whole colon out, it’s out of place and no longer functioning”.
I nodded as tears began to fill my eyes and she proceeded to tell me about the process and how she does things. At the end of the discussion, I was only certain that I would be okay, but I didn’t know how I was going to wake up looking.
That’s what taunted me the most. Not knowing whether or not I’m going to have a bit of my intestines coming out of my abdomen and a huge incision, whether I’ll have a colostomy bag or not, I didn’t know and I couldn’t prep myself for the outcome.
In the days leading up to my surgery, my father thought it would be a good time to let me know that he was no longer going to assist my mom with my rent and we had a huge fight.
He ended up not coming up for my surgery due to some other things, but that hurt me a lot.
My surgery date finally came , which was April 4, 2015 and I got prepped, gave my already crying mom and big hug and kiss and off I went into the operation.
I woke up mid-ride to my room, and was greeted by two friendly male nurses who let me know what was going on.
We get into this luxurious room and I was in awe. There was a huge tv, a panoramic view a guest bedroom and a nice bathroom.
The nights that followed were anything other than luxurious though. I couldn’t control my bowels for awhile so more times than I care to talk about, I woke up in a pool of poo. I had drains, wires, gadgets and gizmos galore and everything was kind of frustrating, but I got over it.
Throughout the whole ordeal, I felt an overwhelming presence of God around me. I knew he had me and I knew I would be okay.
The procedure I ended up having was an ileorectal anastomoses. My surgeon essentially just hooked my small intestines to my rectum and I use the bathroom like normal.
Fast forward to now, 2018 and not much has changed, really. I’m still battling with my Crohns and POTS, I still am not able to have a normal 9-5 job and my body definitely still controls my life & I still live with my mom and spend most of my day at home.
Currently, my Crohns is the biggest issue. I’m on Emtyvio infusions with Methotrexate, but I’m still having flares. It’s gotten to the point now where I can’t eat anything without it hurting, bloating me or making me itch. If not all three.
I literally have no idea what’s happening with my body and I haven’t found a doctor who is willing to take the time to dig and find the root cause of everything.
I was seeing a doctor at Vanderbilt, but she’s sort of washed her hands of me. I was recently admitted to the hospital for my Crohns and the doctor called her to see if she could get me in over there and she said no.
This is what I have been dealing with for the last ten years.
Now, my hair is falling out, I’m retaining water, I’m in pain, I have no energy, I’ve got strange bumps showing up, but apparently everything is “fine”. My CBC is “fine and normal”. There’s clearly something going on with my body and it’s like no one cares.
The unwillingness to help is absolutely astonishing to me. I’ve literally exhausted all my options for doctors except to return to one that previously had given up on me. The hurry up and wait game all over.
Now, I’m back in the same “nothing” cycle and it’s driving me insane. The lack of compassion is ridiculous.
On top of having to suffer while I wait for an appointment with a doctor who may or may not do anything, the disability that I was forced to fight so hard for has decided that since I live with my mother, I don’t deserve $720 to live off of. I only deserve $420 a month for food, medicine, copays, gas and bills.
I’ve been jerked around and done wrongly so much that it’s not even a surprise anymore. I literally, don’t get a break.
Government aid is useless because I actually need it and they’d rather tend to the drug abusers who abuse the system.
I have all these spiritual gifts with no way of using them and no friends.
It’s like being in an abusive relationship with that crazy guy who always tries to isolate you from the outside world and your friends.
The only difference is, the goal with me is to push me over the edge and break me before I have a chance to rise up. .
And I will..
It’s taking its toll on me. My body is beat down and my mind is beyond exhausted. Yet, I’m still pushing on.
And I’m still going to become victorious in the end, because Gods got me.
I’m a legend in the making.