Where do I begin? Well it all started about 5 ½ years ago when I was 12 years old my life up till that point was great I was on a volleyball team and was one of the best players and was getting good grades and had lots of friends and my home life was great! I couldn’t ask for more. But then I started getting these pains in my knees so bad that I couldn’t walk. My knees would swell to twice there size. I went to see a knee doc and he said to wear knee braces. So when I had a volleyball game I would wear these braces. I had hoped that these would solve my knee issues but it didn’t. Eventually I had to have bilateral knee surgery. Afterwards I had to go to school with a walker like an old person because I didn’t have good coordination. It was so embarrassing. I just thought to myself that if I can get thru this, things will be better and go back to the way things were. But I was wrong so very wrong….6 months later I started to experience what I now know it ulcerative colitis. I would bleed every time I went to the bathroom and in large amounts. . I was losing weight and fast and I was anemic. I went to see a doc and they started some test and colonoscopies. The diet didn’t help no matter what I ate I would always bleed. The meds didn’t help either and eventually they had some more testing done this time with my genetics. They found an unusual marker and came with idea that I might have an autoimmune disorder where my body tends to attack its self. After they realized that they put me on chemotherapy. They taught by suppressing the immune system that it would stop. The docs started me off on a low dose but it didn’t work so the upped the dose. Because they upped the dose I then needed to be homeschooled. This then meant I was alone for weeks, months, even years while being in pain trying to keep up with school and do my best to keep it together as I threw up every morning including losing my hair. I felt so depressed and so alone having no friends at all. It went on like this for 2 ½ years. Again I thought just get thru this and thing s will get better. Finally the docs said that it would be best if I had a total colectomy ( Its when they remove your colon leaving only your small intestine). It was a series of 2 surgeries .I was so upset because this just meant that I went thru hell just to have a major surgery. We stopped the chemo and planned on having the surgery. It was around the time of my surgery A family friend said she would take me to cedar point before I had the surgery. I was so excited! Finally a normal teenage thing to do! My mom, my brother and I were at the mall looking around to see what I can buy with my new gift card I got for my 17th birthday. My birthday was still 3 days away but my uncle sent the card early. When we left the mall on our way home a teenage girl texting on her cell phone rear-ended us. I was in the back seat. Both our cars were totaled. I was rushed into the hospital trauma center and was there for 3 days on my birthday. While I was getting x rays of my neck the radiologist saw that my wisdom teeth were severely impacted. So when I went home I had to wear a neck brace. It sucked not to mention I couldn’t go to cedar point 5 days after I got the neck brace off I was in the dentist chair getting my wisdom teeth removed. I couldn’t go under anesthesia because I was going to have the total colectomy in 2 weeks. The whole teeth thing was horrible. 2 weeks later I was having the surgery. When I woke up I was in so much pain. The doc said that I would be in the hospital for 3 to 5 days but because of complications I was there for 10 days. When I got home I was so happy to be home. But 3 weeks after I got home I got the call that my grandma died. I was devastated. Since my grandma lived in Florida I had to travel to Florida. When I got back home I was a wreck after my surgery and the death of my grandma and again I just said to myself just get thru this and things will be better but again I was wrong. One day I was in so much pain and I wasn’t going to the bathroom (I didn’t mention this before but when you have a total colectomy you have a bag on the side of your body when a piece of intestine is hanging out so you could go to the bathroom. It is normal for you to go maybe 10 times a day into the bag) I called my dad and he took me to the hospital. I got in really fat the doc did an examination and admitted me into the hospital. They were placed an IV and gave me pain meds. The doc came in and said that he wanted some x rays done. My dad called my mom and she and my brother came to the hospital. The doc came back shortly after the x rays were taken and said that he has to perform a surgery. That it appears to be a volvulus and it needs to be taken care of immediately and that I could die in the next 7 hours if we wait too long and that I had a less than 33% chance of living. I didn’t realize how serious the situation was until they were wheeling me down to the OR. All I could think was I didn’t want to die. I still had a life to live. I just had a surgery that hurt like hell so that I could try to live a normal life. Was this going to be like the chemo? All of this pain for nothing? Will I go to heaven or hell? Will I see grandma? When I woke up I hurt so badly. I was alive tho and that’s all I really cared about. I swore that day that I would be a better person, daughter, sister, and friend.One month after that I was due for my 2nd surgery to reverse my bag and go back to going to the bathroom normally. I had the surgery this time with no complications. I went home on time and things got better at least for a little while. In January I started having pains with my female organs. I would bleed constantly without stop I was becoming anemic again and having really bad pain. I went to see the doctor and no matter what we did we could not stop the bleeding and pain. One day the weirdest thing happened I stopped bleeding and I was happy for a few day till the pain got so bad my mom called the doctor and got me admitted. They did an ultra sound and it showed that I was bleeding still it just wasn’t coming out. The docs then did a DNC and took a look at my cervix cause they thought that it was the reason why the blood wasn’t coming out. But they said that it opened right up when the performed the DNC. They basically said it something rare but it shouldn’t happen again. Yeah well I developed three more within a month. I had 4 DNC in a month. And again just get thru this and things will get better .For some reason they couldn’t explain it and we tried everything to stop the bleeding and pain. Eventually they came down to 2 options. 1. Have a total hysterectomy or 2. Have a 3 month shot of Lupron. Both will put me into menopause but one will avoid a surgery and removal of yet another organ. I chose Lupron cause I didn’t want another surgery. Stupid autoimmune disorder.Thing went back to normal and I started college. I love college and I was once again social and getting good grades and I even started weight lifting! I was so happy I thought that all my days of pain and loneliness was over. But again I was wrong.I was in the middle of the fall semester when I started to get really nauseous. I started to eat less and then eventually not at all. Then I started having pain near my ribcage. It got so bad that I was admitted into the hospital they did some test but said nothing was wrong with my stomach or my intestine so I went home. When I went for a checkup a week later the doc said that it wasn’t my stomach or my intestine but my gallbladder. So I went to see a different doc and he said we need to remove it and I didn’t want to cuz I just started college but I had no choice. Again I thought just get thru this and things will be better. Stupid autoimmune disorder. It has been 6 weeks since my last surgery. I am going to college in the spring but I am worried that this autoimmune disorder will just attack another organ and I’ll be in pain and alone and depressed or even dead. I don’t have many disposable organs left. I just want the chance to live a normal life. I keep telling myself just get through this, things will get better and they never do. I hate myself and I hate my life. I don’t want to live like this. There is only so much I can take. To be honest I don’t know if life will get better all I have is my experience with my body and it isn’t good. Sometimes I wish that if another organ fails that it will be my heart so I can just die. What do you think I should do? Is my life worth living?
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Is my life worth living?
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You certainly have been through a lot, but your attitude is remarkable and an example as well as an inspiration to all of us. Your value to others, who may also be having difficulties, is unmatched.I, like you, pray that the latest will be the last and that the worst is definately behind you.
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You have inspired me too.
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Wow! You're a beautifully strong spirit.
