Hello wonderful readers!
First, I want to say thank you for all the wonderful comments and views I got so quickly on my first blog post! It was honestly a little overwhelming!
Now it is time to explain the title of my blog.
I fully believe that everyone deserves a second chance. It can be a more simple second chance, like forgiving someone that you had an argument with or it can be a little more deep like surviving a horrific accident. Either way, everyone deserves a chance to live their life to the fullest, no matter the circumstances.
I also believe that some people get extra fortunate and get more than one chance. I call them the "lucky ones". And crazy enough, I consider myself one of the few lucky ones.
Usually people get two chances in life. I've gotten five.
I know you're all saying, "But wait...your blog is called Six Chances."
You'd be correct. Let me explain.
My first chance came when I had my first surgery. This surgery was supposed to change everything, and despite it not changing everything like I would have hoped, it did change everything. I may not have been aware what was going on at the time, but it changed my life. I lived. That's all that really matters. So that was Chance #1.
2nd surgery, after doctors found an infection = Chance #2
3rd surgery, after doctors found an abscess = Chance #3
4th surgery, after doctors found another infection and ended up giving me an ileostomy = Chance #4.
5th surgery, after six months of recovery, reversal of ileostomy = Chance #5
So basically my chances are based off of my surgeries. At least in my mind they are. Each surgery gave me a chance to live. I was a very sick girl. They honestly didn't know if I would make it out of the hospital. With every surgery, most people get a higher chance of survival. For some reason, mine got lower with every surgery.
Every chance that God has given me, I have fought back to the best of my ability. And look where I am today. I'm doing what I love and it is going to lead to my dream career. Something I am going to love getting up for every morning. Something that will give me a chance to work with children every day. Something that will give me the opportunity to learn something new about life and about myself every single day. Something that will give me a chance to give someone else a chance, whether it be their first chance or tenth chance. This is what I feel I was made for. I was made to go through these challenges so that I could give other people chances and understand them.
But unfortunately everything has been halted for the moment.
Back in April, I had a colonoscopy, just as an "every three years" kind of thing. They found an area in my small intestine that was very narrow, to the point where they couldn't even get the camera through. My doctor sent me to a specialist in Gainesville, FL. Her job was to give a second opinion. She found out that I had tried just about every biologic medication out there. I had built up antibodies to one and I had to stop it. The second one just wasn't working. So I started a double therapy. I started taking a pill version and an IV version. I started Remicade, which is given through an IV every six weeks. I basically just sit in a room for three hours and receive the medication, while I either study or watch Netflix. On top of all this, I changed all my supplements and started on more heavy ones that would absorb better into my system.
We waited and I started to feel SO much better, so of course, I got really excited. They did some blood work in October and all my levels were perfect. My white blood cell count and CRP levels (which is an indicator of inflammation) were all completely within normal limits. Let me tell you...that hasn't been the case in about ten years. When you have an autoimmune disease, your body attacks anything that may be out of the normal. Well basically my entire life isn't normal, so when you have TWO autoimmune diseases, you have to be extremely careful with anything and everything you do. Usually my CRP levels are high because of some type of inflammation, and then my WBC count goes up because they start to attack the inflammation. So both are usually high. I honestly don't remember the last time they were normal.
So of course I had high hopes. Maybe this would be my chance at remission. Maybe the inflammation was going away because the medication was working.
And then I started to get sick again.
Around Thanksgiving I started getting really nauseous all the time. It was hard for me to reverse it, so I would be in bed all day. It was hard to keep much of anything down so I started losing weight. Christmas came and went and I wasn't doing any better. When I returned to St. Augustine for my spring semester, I called my doctor to talk about the issues I had been having. I was sent for an x-ray of my abdomen to see if I had an obstruction and a large series of blood tests. The blood tests came back and the results were great. The x-ray came back and the results were less than great.
They found that the narrowing I had back in April was still there. And it hadn't become any smaller.
What does that mean exactly? Well it means that the medication is working. My CRP and WBC counts and all my vitamin levels are great. This means that the narrowing isn't necessarily being caused by my Crohn's. The narrowing is from scar tissue. Where did this come from and how did it get there? Well it came from my past surgeries and it's there because my body never really had the best chance at recovery, so in theory, that narrowing has been there since I had the surgeries ten years ago. What gets rid of scar tissue? The "S" word. Surgery. The doctors could give me every medication in the world, but nothing gets rid of scar tissue.
So what's my next step?
Well first, I took a medical leave from school. I am currently not in school because of everything happening. It was incredibly hard for me to do that, but I knew I didn't have the right mindset to focus on school as much as I should be. My advisor and program director have been extremely supportive and agreed with my decision. So I did it.
Second, I am going back to see another specialist in Gainesville. At this point, the end result will be surgery. I am going to push for the surgery. I'm ready to feel better and obviously I am not looking for a quick fix, but if this helps, then I am all for it. I am going to see the specialist on January 30 (next Monday), so prayers would be appreciated.
Third, I will meet with a surgeon and hopefully schedule something.
Logistically, it's a little crazy that I am going farther from home to do this. I am about 6.5 hours away from Fort Mill right now, but Gainesville is another two hours away. But we have it planned out and my family is ready to do what they need to at a moment's notice.
What is going on in my head? A LOT. Of course I'm anxious. Anxious to feel better but also anxious to actually have all this done. Scared because why wouldn't I be? My history isn't the best. My track record indicates that anything can happen, so I have to be ready for anything to happen. Excited to feel like me again and to go back to school eventually with a whole new determination. Tired because I haven't been sleeping well. A lot of things running through my mind at all times. It's honestly exhausting.
Right now, I'm just trying to keep myself busy. I've planted some flowers on our porch, cleaned a lot, found some new recipes to try, signed up for a sign language online class, watched a lot of Gilmore Girls on Netflix, found some books to read on the beach, made some plans of things I want to do in St. Augustine, continued with my private trainer, and started this blog. I'm doing these things for me, because I fully believe you not only have to be physically and medically strong, but also emotionally and mentally strong to deal with something like this.
So that brings me to Chance #6. Well it technically hasn't happened yet. But it's coming up quick. And I have no doubt in the world that I will thrive throughout this time and beat it in the end. My 6th chance is coming and I can't wait to see what's on the other side.
As always, thank you for reading! If you have any questions or comments, I encourage you to add them at the bottom! As you can tell, I'm very open about everything and willing to share just about anything you want to know. I promise to keep everyone updated, and because that's all I know as of right now, I'm moving on to other things in my next blog post.
So stay tuned!
XOXO,
Kayleigh
Thursday, January 26, 2017
Monday, January 23, 2017
Let the Journey Begin!
Hello Blog-Readers!
Thanks for visiting my blog and reading my first blog post! This was a long time coming.
So let's start with an introduction.
My name is Kayleigh Quinn. I'm 25 years old, and I grew up in Fort Mill, SC and attended the University of South Carolina (Go Cocks!), graduating with a Bachelor of Science in Experimental Psychology. I was in Gamma Phi Beta and was heavily involved with USC Dance Marathon and Big Brother Big Sister of Greater Columbia. I always knew I wanted to work with children, which led me to St. Augustine, FL where I am now pursuing my Master's Degree in Occupational Therapy at the University of St. Augustine for Health Sciences.
Probably the biggest part of my life has been the presence of an autoimmune disease. I was diagnosed with Crohn's Disease when I was 12 years old, and later diagnosed with Celiac Disease when I was 23. I have definitely been through the ringer growing up with this disease, but it has made me who I am and I am proud of it and how I've dealt with it.
So that's what I am dedicating my first blog post to. I want you to know more about me and who I am. I don't want you to take this as a sob story. I want you to read this and gain something from it, whether it be awareness of my disease, some kind of inspiration, or just a really great survivor story. And along the way, I will explain exactly why I chose the title of my blog, Six Chances.
As I said before, I was diagnosed at age 12. But that isn't where it started. My mom always used to say that something was always wrong with me. Every kid loves to hear that, right? Well she was right. Something was always off. My diagnosis came after a series of random symptoms that never seemed to go together. I was a dancer until I was 18 and had never had more than a sprained ankle. When I was 11 or 12, my ankle became the size of my neck for no reason at all. The doctor said it was probably just a sprain from dance, but I knew that wasn't it. I started getting headaches that would have me out for hours. I would get sick in the mornings before school and cry because I liked school. I didn't want to miss school because I didn't feel good. I had some blood drawn and they found I was anemic, which means my iron levels were low. The doctor immediately sent me to a gastroenterologist and he did some more extensive tests (like a colonoscopy, biopsy, and more blood work). We went back for a check-up with Dr. Houck and that's when the news came.
I had Crohn's Disease.
I was only 12 years old and I was going to have this disease for the rest of my life.
I remember the room. I remember the smell. I remember the clothes I was wearing. I remember sitting on the table completely numb. I remember my parents asking questions but me barely hearing them. I remember my mom holding back tears. I remember walking out and keeping a straight face. Until I got to the car. Then I let it all out. I let it all loose and just cried all the way home and probably for the rest of the week.
I immediately started on medications. I had never even taken a pill before. My dad actually had to lock me out on the front porch until I took the medication. I sat there with two glasses of water, peanut butter, crackers, juice, and about six pills I needed to take before being let back in. Sometimes tough love works best, because guess what...I now take about 10 pills a day without a problem in the world. Those medications did what they needed to do until I was 14. That's when it all hit the fan.
I was in the hospital for a week at the end of my eighth grade year, which at the time, was the longest stay I had had so far. I again went in to see my GI doctor, and then came the "S" word. Surgery. I still hate saying that word, but I had to do it if I wanted to be healthy again, or at least healthier. We scheduled it for July 28th so that I would have time to recover and then I could start high school.
Well things didn't go as planned. I was very unhealthy. I was about five feet tall and about 80 pounds. That's not good. I had the first surgery, which was basically to remove the section of my colon that was narrowed and unhealthy. My surgeon later said it was the size of a baseball and because it was all so jumbled, they didn't know exactly how much they took out.
A few days later, my body decided to revolt and we found out that the section that was sewn back together was infected and they needed to go back in and remove more. So they did. A couple days later, the area abscessed, which means it was full of pus. They went back in again. A couple days later, another infection. This time the doctor pulled his colleagues in because he was at a loss for words. He didn't know what else to do. So they went in again, but instead of going through my original incisions, they went down the middle of my stomach so they could see everything and make some decisions. The decision was to give me an ileostomy. They told my parents I was very sick, but that if the ileostomy worked, I would be able to gain some weight and hopefully make a full recovery.
I don't remember much from these first few weeks in the hospital. I vividly remember three things, all of which happened at random times, and I honestly don't know what order they happened. My parents and family members always offer to tell me what happened, but I don't want to know. I know enough. God would give me those memories if He truly wanted me to have them. I feel I blocked them out for a reason, and that reason was so that I could live my life without the images I saw haunting me.
My "awakening" was quite vivid. I remember going to the playroom when my brothers visited one afternoon. I kept telling my mom that I needed to go to the bathroom, but she knew that couldn't be the case. She finally took me into the bathroom, I lifted up my hospital gown, and I saw the bag and freaked out because I didn't know what it was. Everything after that afternoon, I remember.
I stayed in the hospital for another four weeks. I eventually went home with a PICC line for IV fluids, an ileostomy, a wound vac that covered the incision down the middle of my stomach, a home health nurse, and a homebound teacher. I would miss my first semester of my freshman year. I would miss my 10th year of dance. I would have to mix my own IV medications every night. I would have to gain some weight if I ever wanted to get rid of my ileostomy.
And then it happened. I grew eight inches and gained 30 pounds. All within FOUR months. it was amazing. So we scheduled the surgery and on December 27th, I had a reversal.
I met with the surgeon for the last time and he told me this: "You were the sickest child I have ever encountered, but you beat it. And now you are my most improved and I couldn't be prouder."
Then he retired. We joke that I put him into retirement and that we basically paid for his vacation home on the beach somewhere, but in reality, he had been planning to retire regardless. He actually ended up staying with the practice until I was completely discharged because he wanted to experience the whole journey with me. So shout out to Dr. Attori, wherever you may be, for sticking through it and helping me get back to my life. Couldn't have done it without you.
Years went by with virtually no problems. Stress affected me most. So college was difficult. I struggled to stay healthy, but by taking an extra year (partly because I changed my major twice), I was able to graduate and come to grad school. In my last year of college, I experienced a lot of weight loss in a very short period of time. I had an endoscopy, and the biopsies and blood tests came back as positive for Celiac Disease, which is an autoimmune disease that causes your body to attack any kind of gluten you ingest. So I went gluten-free. Cut it out cold turkey. And within a few weeks, I started to feel better.
Then we move to now. Now I am in grad school, pursuing a career I could only imagine of having at the age of 12.
BUT, you'll have to tune in next time for an update on now. And with that update, you'll find out why I named the blog, Six Chances.
So if you've made it this far, I applaud you, because I know that was a lot.
I want this blog to be a little bit of everything. Yes, it will include a lot of updates, but I don't want it to only be about Crohn's Disease. That's not me. I'm not just a disease. So I will honor that by including my favorite things. Recipes, lifestyle and wellness tips, my workout regimen, my daily life, and my overall journey through life. I'm going to give you an up-close view into my life.
I invite you to join me, because without all of you, I wouldn't be where I am today. I am who I am because of the support I have received, the prayers that have been lifted towards me, and the kind words I have heard. My main role is to be an advocate, but not for what you think.
My role is to advocate for LIFE. It's a wonderful thing, and I enjoy it everyday!
So come enjoy it with me!!
XOXO,
Kayleigh
Thanks for visiting my blog and reading my first blog post! This was a long time coming.
So let's start with an introduction.
My name is Kayleigh Quinn. I'm 25 years old, and I grew up in Fort Mill, SC and attended the University of South Carolina (Go Cocks!), graduating with a Bachelor of Science in Experimental Psychology. I was in Gamma Phi Beta and was heavily involved with USC Dance Marathon and Big Brother Big Sister of Greater Columbia. I always knew I wanted to work with children, which led me to St. Augustine, FL where I am now pursuing my Master's Degree in Occupational Therapy at the University of St. Augustine for Health Sciences.
Probably the biggest part of my life has been the presence of an autoimmune disease. I was diagnosed with Crohn's Disease when I was 12 years old, and later diagnosed with Celiac Disease when I was 23. I have definitely been through the ringer growing up with this disease, but it has made me who I am and I am proud of it and how I've dealt with it.
So that's what I am dedicating my first blog post to. I want you to know more about me and who I am. I don't want you to take this as a sob story. I want you to read this and gain something from it, whether it be awareness of my disease, some kind of inspiration, or just a really great survivor story. And along the way, I will explain exactly why I chose the title of my blog, Six Chances.
As I said before, I was diagnosed at age 12. But that isn't where it started. My mom always used to say that something was always wrong with me. Every kid loves to hear that, right? Well she was right. Something was always off. My diagnosis came after a series of random symptoms that never seemed to go together. I was a dancer until I was 18 and had never had more than a sprained ankle. When I was 11 or 12, my ankle became the size of my neck for no reason at all. The doctor said it was probably just a sprain from dance, but I knew that wasn't it. I started getting headaches that would have me out for hours. I would get sick in the mornings before school and cry because I liked school. I didn't want to miss school because I didn't feel good. I had some blood drawn and they found I was anemic, which means my iron levels were low. The doctor immediately sent me to a gastroenterologist and he did some more extensive tests (like a colonoscopy, biopsy, and more blood work). We went back for a check-up with Dr. Houck and that's when the news came.
I had Crohn's Disease.
I was only 12 years old and I was going to have this disease for the rest of my life.
I remember the room. I remember the smell. I remember the clothes I was wearing. I remember sitting on the table completely numb. I remember my parents asking questions but me barely hearing them. I remember my mom holding back tears. I remember walking out and keeping a straight face. Until I got to the car. Then I let it all out. I let it all loose and just cried all the way home and probably for the rest of the week.
I immediately started on medications. I had never even taken a pill before. My dad actually had to lock me out on the front porch until I took the medication. I sat there with two glasses of water, peanut butter, crackers, juice, and about six pills I needed to take before being let back in. Sometimes tough love works best, because guess what...I now take about 10 pills a day without a problem in the world. Those medications did what they needed to do until I was 14. That's when it all hit the fan.
I was in the hospital for a week at the end of my eighth grade year, which at the time, was the longest stay I had had so far. I again went in to see my GI doctor, and then came the "S" word. Surgery. I still hate saying that word, but I had to do it if I wanted to be healthy again, or at least healthier. We scheduled it for July 28th so that I would have time to recover and then I could start high school.
Well things didn't go as planned. I was very unhealthy. I was about five feet tall and about 80 pounds. That's not good. I had the first surgery, which was basically to remove the section of my colon that was narrowed and unhealthy. My surgeon later said it was the size of a baseball and because it was all so jumbled, they didn't know exactly how much they took out.
A few days later, my body decided to revolt and we found out that the section that was sewn back together was infected and they needed to go back in and remove more. So they did. A couple days later, the area abscessed, which means it was full of pus. They went back in again. A couple days later, another infection. This time the doctor pulled his colleagues in because he was at a loss for words. He didn't know what else to do. So they went in again, but instead of going through my original incisions, they went down the middle of my stomach so they could see everything and make some decisions. The decision was to give me an ileostomy. They told my parents I was very sick, but that if the ileostomy worked, I would be able to gain some weight and hopefully make a full recovery.
I don't remember much from these first few weeks in the hospital. I vividly remember three things, all of which happened at random times, and I honestly don't know what order they happened. My parents and family members always offer to tell me what happened, but I don't want to know. I know enough. God would give me those memories if He truly wanted me to have them. I feel I blocked them out for a reason, and that reason was so that I could live my life without the images I saw haunting me.
My "awakening" was quite vivid. I remember going to the playroom when my brothers visited one afternoon. I kept telling my mom that I needed to go to the bathroom, but she knew that couldn't be the case. She finally took me into the bathroom, I lifted up my hospital gown, and I saw the bag and freaked out because I didn't know what it was. Everything after that afternoon, I remember.
I stayed in the hospital for another four weeks. I eventually went home with a PICC line for IV fluids, an ileostomy, a wound vac that covered the incision down the middle of my stomach, a home health nurse, and a homebound teacher. I would miss my first semester of my freshman year. I would miss my 10th year of dance. I would have to mix my own IV medications every night. I would have to gain some weight if I ever wanted to get rid of my ileostomy.
And then it happened. I grew eight inches and gained 30 pounds. All within FOUR months. it was amazing. So we scheduled the surgery and on December 27th, I had a reversal.
I met with the surgeon for the last time and he told me this: "You were the sickest child I have ever encountered, but you beat it. And now you are my most improved and I couldn't be prouder."
Then he retired. We joke that I put him into retirement and that we basically paid for his vacation home on the beach somewhere, but in reality, he had been planning to retire regardless. He actually ended up staying with the practice until I was completely discharged because he wanted to experience the whole journey with me. So shout out to Dr. Attori, wherever you may be, for sticking through it and helping me get back to my life. Couldn't have done it without you.
Years went by with virtually no problems. Stress affected me most. So college was difficult. I struggled to stay healthy, but by taking an extra year (partly because I changed my major twice), I was able to graduate and come to grad school. In my last year of college, I experienced a lot of weight loss in a very short period of time. I had an endoscopy, and the biopsies and blood tests came back as positive for Celiac Disease, which is an autoimmune disease that causes your body to attack any kind of gluten you ingest. So I went gluten-free. Cut it out cold turkey. And within a few weeks, I started to feel better.
Then we move to now. Now I am in grad school, pursuing a career I could only imagine of having at the age of 12.
BUT, you'll have to tune in next time for an update on now. And with that update, you'll find out why I named the blog, Six Chances.
So if you've made it this far, I applaud you, because I know that was a lot.
I want this blog to be a little bit of everything. Yes, it will include a lot of updates, but I don't want it to only be about Crohn's Disease. That's not me. I'm not just a disease. So I will honor that by including my favorite things. Recipes, lifestyle and wellness tips, my workout regimen, my daily life, and my overall journey through life. I'm going to give you an up-close view into my life.
I invite you to join me, because without all of you, I wouldn't be where I am today. I am who I am because of the support I have received, the prayers that have been lifted towards me, and the kind words I have heard. My main role is to be an advocate, but not for what you think.
My role is to advocate for LIFE. It's a wonderful thing, and I enjoy it everyday!
So come enjoy it with me!!
XOXO,
Kayleigh
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