So as I mentioned in my last post many moons ago I planned on discussing my illness I've been recently diagnosed with. I have not told many people about it or posted anything on social media for a few reasons but I think it is important to spread awareness to people who don't know anything about it or think it's "no big deal."
I guess I should start from the beginning which was August of 2014. WARNING: the rest of this post may make you feel uncomfortable as my symptoms are slightly embarrassing; however, important to my story. Anyway, one day in August, 2014 I went to the bathroom like any other day and it was really painful. I mean everyone experiences pain while going to the bathroom every now and then so I didn't think it was a huge deal. The next day it was worse, and the next day even worse. This went on for about 2 months before I finally went to the doctor. After doing my own research I came to the conclusion that my issue was most likely a fissure (one or multiple cuts on the anus). I looked up what could cause these and of course I got the normal causes ranging from hard stool to you're going to die. That's what I get for using google I guess. So I went to the doctors in late October and it was confirmed that I had a fissure. He told me to take stool softeners, do sitz baths, pretty much everything I was already doing. Well, after a couple more months nothing helped and I was still in pain every day. This wasn't just a sharp, short lived pain either. It was so excruciating that I almost broke the toilet paper holder trying to brace myself and the pain would linger throughout the day. If I would move the wrong way or sit for too long I would experience the worst pain in the worst spot.
The next step
I believe it was after Christmas that I finally made an appointment with a gastroenterologist (a doctor that specializes in the digestive tract). I could not take the pain anymore and needed to get an answer as to why this hadn't gone away yet. The gastroenterologist prescribed me cream after cream ranging in price from $10 to $250. Finally, after no change I begged for a colonoscopy because I could tell something more serious was going on in my body. My doctor and I compromised and he agreed to let me have blood work done to check for inflammation. (I also had to do a stool sample but that is pretty self explanatory). I was on my way to the mall with my mom and sister a few days later when I got the call. I saw a Massachusetts number I didn't recognize calling me so I figured it was the gastro doctor telling me everything was normal. That wasn't the call I received. The nurse nonchalantly told me that my blood showed signs of inflammation and that I needed a colonoscopy and someone would be calling me later to schedule it. Confused, I said okay thank you and hung up the phone. My mom could tell by my face that it wasn't good news and I told her what she said. After calling the nurse back to get more information I was confident that I was going to die. I'm kidding but I knew this wasn't good.
The procedure
After a day of starvation and pooping my brains out I was ready for the colonoscopy. I actually cheated and ate a funion on my prep day and was really nervous they were going to be able to tell. So I went in for the procedure and I remember being really cold; probably because I was so dehydrated from the day before. Some young nurse messed up my IV in my arm so the anesthesiologist came and put one in my hand. The nurse rolled me into the procedure room as I heard cries of pain from recovery rooms. So intimidating. All of the nurses and my doctor filed in all prepped and ready to go. The anesthesiologist started putting me to sleep and I remember saying "I'm falling asleep! Help I'm scared!" and then I was out. When I woke up I was loving it (soooo under the influence). I even asked for some of the medicine to go which was obviously a no-go. I snapped right out of it when the doctor came back and told me I had Crohn's disease. I asked all the right questions like "can this lead to anything more serious?" and "is this going to prevent me from having kids?" That's when I started to cry because that was my biggest fear. After being assured everything was going to be fine I was debriefed and sent on my way.
The aftermath
When my parents and I got back home my mom basically treated me like I was going to die. But I knew it was just because she was scared and everything that happened with my sister came rushing back. I tried to keep my distance but assured her I was going to be fine. Being strong for her made it easier for me. When I told my boyfriend and close friends I played it off like it was no big deal because that is how I made myself feel safe. But when people started treating me like it was no big deal I felt alone and unsupported. Sometimes it's not the actual disease that is the hardest part, it's the idea that I have a chronic disease that I'm going to have for the rest of my life. This disease can also lead to life-threatening illnesses. There is a greater chance that I may get diagnosed with lymphoma, colon cancer, and while my immune system is compromised I am more likely to get an illness like pneumonia that could kill me. After learning all of this I felt completely helpless. I was afraid that my parents would have to bury another one of their children before it's their time. The psychological pain is what kept me up at night, not the physical pain.
My fears
My biggest fear going into this was that this disease was going to affect my everyday life. Unfortunately it's starting to. I'm currently in the midst of a flare up which means my intestines are inflamed, causing pain. When I first found out I had Crohn's and the months leading up to it my only symptom was the fissure. Now I deal with abdominal pains, painful bloating, constant rumbling, painful mouth sores, and side effects from my medicines. I take a steroid every morning along with a medicine called Pentasa that I have to take 4 times a day. I have mood swings, I'm always hot, and my fat deposits on my body are all messed up. Just last week my boyfriend got me a tattoo for my birthday. I had to cancel the appointment because I'm immunosuppressed from the steroid and need to talk to my doctor first. I called my mom crying because its just one more thing I can't do because of this disease.
How I deal
At this point in time I deal with my disease in many ways. I try to watch what I eat because some foods bother me more than others. I had to give up my favorite food, buffalo chicken, and I can't eat greasy or fried foods without regretting it later. I also see a counselor to help deal with it mentally so I don't feel so alone. And I'm always looking for new ways to get better. In fact, today I will be contacting a nutritionist to aid in my recovery. I also have a really good support system. My parents are wonderful and are always looking out for my health. My sister and friends always help me take my mind off of it. And my boyfriend is amazing and still makes me feel beautiful even when I know I look and feel terrible.
So at this point the most important things are accepting the fact that I am living chronic and always will, knowing I'm strong enough deal with this but also continue to succeed in my everyday life, and loving myself and my body even when it doesn't love me back. I hope that after reading this people have a better idea of what Crohn's disease is and doesn't think it's just "no big deal" because it's a big deal to me. It's a big part of my life. Stay healthy my friends.
Monday, September 21, 2015
Monday, August 31, 2015
The beginning...
As I'm sitting here eating left over pasta thinking about what to write about in my first post, a million ideas flow through my head. Should I start with my childhood? How my summer was? Or how about my fears and aspirations in life? Even though these are all good choices that would be an interesting read for everyone, the most appropriate topic to talk about would be the experience in my life that helped shape who I am. I'm sure most people reading this already know what I'm about to share but I think it is important for people to know how it influenced MY life and who I am today.
When you think of a 12 year old girl you probably think of middle school drama, puppy love, innocence and immaturity. Unfortunately, I was not your average 12 year old. On December 26, 2006 my younger sister, Megan, was diagnosed with Acute Myeloid Leukemia (AML). As a 7th grader, I was forced to become more mature and responsible than most high school and college students. I constantly had to make choices between sleepovers with friends and spending the night at the hospital with my sister. My amazing parents let me make these decisions on my own; trying not to take away what little childhood I had left. However, I always chose to stay with my sister. She was my absolute inspiration and what I looked forward to every day. After school I would come home, shower, and one of my parents (usually dad was with my older sister and I) would take Chelsea and I to the hospital until late at night. Chelsea and I had to take many precautions against getting sick so we wouldn't put Megan in danger since she was immune suppressed. We were forced to say no to hanging out with friends that had the sniffles or even if their siblings or parents had been recently sick. These sacrifices I had to make chipped away at my immaturity and childhood but built my wisdom and adulthood.
After 18 months of up's and down's, being in remission and relapsing, traveling from hospital to home to a different hospital and back, my sister lost her battle with cancer. The morning of June 5, 2008 was my 8th grade field trip. My aunt was staying with Chelsea and I because both of my parents were with Megan. My mom called my aunt and told her Megan was not doing well and being the amazing mom she is, she told my aunt to give me the decision whether to go on the field trip or come to the hospital. As I was packing up for the exciting day I thought I was going to have, my aunt came in my room and told me my choices. That choice was the best and most important choice of my life. I naturally went with my aunt and sister to the hospital. When we walked up to her room, a blanket was covering the window which I thought was strange. Megan was in and out of consciousness asking for juice that she would just throw back up. My dad waited for Megan to slip out of consciousness again and told Chelsea and I that Megan was not going to make it through the day. This was the worst news I ever received in my life. We all surrounded Megan as the nurses sedated her so she would not feel any more pain. After a couple hours of weeping and asking God to please take her, she passed away as I held her hand. After that moment my memory goes blank. I do not really remember what happened leading up to her wake and funeral. It was just so painful that my mind blocked it out and frankly, I am glad. Those memories can stay hidden away behind all of the fun memories before she got sick.
That summer I almost never left my house. Sometimes I would hang out with a couple of my close friends but that was about it before entering the infamous 9th grade. My parents encouraged me to try to have fun and do a lot of extracurricular activities. That is just what I did. I played soccer, played clarinet in the band, was the secretary of student council, and participated in the Peer Helping Network. I continued with most of these activities for the rest of my high school career and was even elected president of my class for 2 years in a row. However, my impossible loss never left my mind. Sometimes I look back and wonder if I ever really dealt with the death of my sister. Diving into school and all of my activities kept me busy and that's what I thought I needed at the time. I was proud of myself and really happy with the young woman I had become and everyone around me seemed to agree. "Look at Sarah and what she's been through she's become such an inspiration." "I want my kids to be just like her." I heard those phrases a lot. I even got elected as homecoming queen by my peers. Everyone really seemed to like me. However, they only liked the smiling, happy, social me that they saw. The me that did not actually deal with my loss was depressed and isolated and only I could see and feel her.
There were multiple times where I wanted to die but I could not fathom putting my family through another loss. I went through periods of such depression that I would stop eating and lose 10 lbs. However, people did not see these things because I wouldn't let them. But I think it is important to tell people how much I struggled and how much I still struggle. I have extreme control issues always striving for perfection and still struggle with my eating sometimes. I think a big reason I suffer from these issues are because I had absolutely no control over what happened to me 7 years ago and now I am trying to get back in control. Now I am trying to put the pieces back together and get through life. Sometimes I lose sight of the big picture; happiness. However, with the help of my family, friends, and loving boyfriend I am reminded everyday to deal with my struggles and issues and be happy.
I'm sorry to start off this blog with such a sad story but I want people to know the real me. In the following posts of this blog, you will see more in depth my struggles; past and current, achievements, aspirations and everything "me."
When you think of a 12 year old girl you probably think of middle school drama, puppy love, innocence and immaturity. Unfortunately, I was not your average 12 year old. On December 26, 2006 my younger sister, Megan, was diagnosed with Acute Myeloid Leukemia (AML). As a 7th grader, I was forced to become more mature and responsible than most high school and college students. I constantly had to make choices between sleepovers with friends and spending the night at the hospital with my sister. My amazing parents let me make these decisions on my own; trying not to take away what little childhood I had left. However, I always chose to stay with my sister. She was my absolute inspiration and what I looked forward to every day. After school I would come home, shower, and one of my parents (usually dad was with my older sister and I) would take Chelsea and I to the hospital until late at night. Chelsea and I had to take many precautions against getting sick so we wouldn't put Megan in danger since she was immune suppressed. We were forced to say no to hanging out with friends that had the sniffles or even if their siblings or parents had been recently sick. These sacrifices I had to make chipped away at my immaturity and childhood but built my wisdom and adulthood.
After 18 months of up's and down's, being in remission and relapsing, traveling from hospital to home to a different hospital and back, my sister lost her battle with cancer. The morning of June 5, 2008 was my 8th grade field trip. My aunt was staying with Chelsea and I because both of my parents were with Megan. My mom called my aunt and told her Megan was not doing well and being the amazing mom she is, she told my aunt to give me the decision whether to go on the field trip or come to the hospital. As I was packing up for the exciting day I thought I was going to have, my aunt came in my room and told me my choices. That choice was the best and most important choice of my life. I naturally went with my aunt and sister to the hospital. When we walked up to her room, a blanket was covering the window which I thought was strange. Megan was in and out of consciousness asking for juice that she would just throw back up. My dad waited for Megan to slip out of consciousness again and told Chelsea and I that Megan was not going to make it through the day. This was the worst news I ever received in my life. We all surrounded Megan as the nurses sedated her so she would not feel any more pain. After a couple hours of weeping and asking God to please take her, she passed away as I held her hand. After that moment my memory goes blank. I do not really remember what happened leading up to her wake and funeral. It was just so painful that my mind blocked it out and frankly, I am glad. Those memories can stay hidden away behind all of the fun memories before she got sick.
That summer I almost never left my house. Sometimes I would hang out with a couple of my close friends but that was about it before entering the infamous 9th grade. My parents encouraged me to try to have fun and do a lot of extracurricular activities. That is just what I did. I played soccer, played clarinet in the band, was the secretary of student council, and participated in the Peer Helping Network. I continued with most of these activities for the rest of my high school career and was even elected president of my class for 2 years in a row. However, my impossible loss never left my mind. Sometimes I look back and wonder if I ever really dealt with the death of my sister. Diving into school and all of my activities kept me busy and that's what I thought I needed at the time. I was proud of myself and really happy with the young woman I had become and everyone around me seemed to agree. "Look at Sarah and what she's been through she's become such an inspiration." "I want my kids to be just like her." I heard those phrases a lot. I even got elected as homecoming queen by my peers. Everyone really seemed to like me. However, they only liked the smiling, happy, social me that they saw. The me that did not actually deal with my loss was depressed and isolated and only I could see and feel her.
There were multiple times where I wanted to die but I could not fathom putting my family through another loss. I went through periods of such depression that I would stop eating and lose 10 lbs. However, people did not see these things because I wouldn't let them. But I think it is important to tell people how much I struggled and how much I still struggle. I have extreme control issues always striving for perfection and still struggle with my eating sometimes. I think a big reason I suffer from these issues are because I had absolutely no control over what happened to me 7 years ago and now I am trying to get back in control. Now I am trying to put the pieces back together and get through life. Sometimes I lose sight of the big picture; happiness. However, with the help of my family, friends, and loving boyfriend I am reminded everyday to deal with my struggles and issues and be happy.
I'm sorry to start off this blog with such a sad story but I want people to know the real me. In the following posts of this blog, you will see more in depth my struggles; past and current, achievements, aspirations and everything "me."
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