First off, I want to thank everyone who has reached out to me in the last few hours. The outpouring of kind words and prayers affect me in so many ways. I can't even believe the amount of people who have talked to me and checked in on me; I am just so thankful to all of you!
On to a summary of my life in medical conditions. This is gonna be long so just bear with me please. Back in 2003, I had a scope done because my stomach was hurting. I was pretty much self diagnosed with being fructose and lactose intolerant. I cut out milk and sugar and things improved. Something that the doctors found in the scope was that I had corn still undigested in my stomach that I had eaten the night before (just keep this in mind for later on). In sixth grade (2005-2006), there was a scoliosis examination at school in PE. A family friend did mine and said that she would have to call my mom just to get it checked out. Turns out that I had scoliosis and it was quite bad! I wore a brace at night for about 2.5 years. My back is still very curved but I never had to have surgery!
The summer before 9th grade (2008) my back was killing me and my family and volleyball coach thought I had a herniated disk. I went to my scoliosis doctor in New Orleans and had a MRI done. After that was done, we found out that I had an ovarian cyst that was 8.5 cm in diameter. We let it drain itself and things were fine. Then I had another one and I was put on pain killers. It went away but then I had a third one in February 2009. That's when I wanted something besides pain killers. At this point, I was a 14 year old who had been to the gynecologist more times than I wanted to admit. I was put on birth control and the cyst have yet to return. About a month later, I torn a ligament in my wrist playing volleyball and was in a long arm splint for 3 months. Did I mention it was my right arm which is my dominant arm? Well, it was! I got through that and moved on with my life. Sophomore year of high school I seemed to be sick every other week. My pediatrician diagnosed me with a range of things: sinus infection, bronchitis, a yeast infection, etc. Come the spring of that year, I was having serious heartburn. I was diagnosed with acid reflux and put on antacids. The heartburn continued so my pediatrician sent my to a gastroenterologist in Baton Rouge to help me. Well that summer my stomach started to hurt and it was quickly getting worse than the heartburn so I told my gastroenterologist to find out what was wrong with my stomach before we tried to fix the heartburn. My junior year of high school I seemed to be at a doctor's office at least once a week running some type of test. In November 2010, I was diagnosed with gastroparesis. This simply means that my stomach does not digest food in a timely manner. Normal people digest a meal in 1.5-2 hours where I take 8-10 hours to digest a meal. I had ridiculous stomach pains as well as headaches, leg pain, and lightheadedness on top of the heartburn.
This is where most of you know my story from. I went to two gastroenterologists in Baton Rouge who tried different regimes of medications that didn't work. Then I went on to another gastro doctor in New Orleans and he told me it was all in my head. I said and I quote, "That is a load of crap!" That was a very short visit. Next we went on to see a gastro at Texas Children's Hospital in Houston. It is now the summer of 2011. I went to Houston for a couple days a month for about 6 months. He tried a few more medications that didn't seem to work either. He said we could try injecting botox into the sphincter muscle at the bottom of my stomach to see if it would relieve some of my pain. He did tell us that it may or may not work. We tried it and it worked but only for a week. So the next month, we tried it again and it didn't work at all. After that we contacted my current doctor in Gainesville, FL at Shands at UF. It is now early December 2011. We had a few connections to the doctor and were able to get an appointment for the first week of January (it was a miracle to say the least). My mom, my nanny, and I went to Gainesville the first week of January to find out if I was a candidate for a temporary gastric stimulator. I call it a pacemaker because it is much easier for people to understand. When we got to Gainesville, the doctor said I was a great candidate for the temporary pacemaker which would then in turn let us know if I was a good candidate for the actual gastric stimulator. We went back the first week of February and put in the temporary pacemaker. It was a huge success! We stayed in Gainesville for about 5 days to make sure that everything worked the way it was supposed to. Now we only had to wait on insurance to approve the actual gastric stimulator that the doctor would have to implant. On February 21, 2012 (Mardi Gras day that year), I had a gastric stimulator implanted in my stomach. I woke up from surgery without the pain I once had. It was instantaneous. Although I had a boat load of pain from the where the doctors cut my skin and muscle, I no longer had the pain that I did before surgery. It took me probably 3 months until I was walking at a normal pace and almost a year until I was "back to normal." Over the course of my junior and senior years of high school I missed well over 50 days of school but graduated with a 4.26, something that I am very proud of.
I started LSU in the fall of 2012 and most of you have met me since then. I was and still am very open about everything that has happened in my past. My freshman year I still struggled with pain and how to manage having a foreign object in my body. Playing sand volleyball was tough but not something that I was willing to give up on because I had a new disease on my resume. I continue to play volleyball and I am even playing twice a week these days (finals are this week!!). Anyways, back to medical stuff. College has been pretty easy as far as medical needs although every now and then my stomach will hurt or vibrate. Yes, I can feel my pacemaker vibrate sometimes. Contrary to what you would think, my pacemaker does not help me digest food any faster but it does help with subsiding the pain and symptoms I was having. Back to having the corn still in my stomach in 3rd grade. I think I have always had gastroparesis, the symptoms just did not present themselves until I was a sophomore in high school. 95% of people will never know what caused gastroparesis and I am in that 95%. I have come off a significant amount of medications but I still take 6 pills a day which is small compared to the 22 I was taking only a few years ago. Again, college has been pretty smooth for me. I went for my 3 month check up for my pacemaker the summer before I started college and they told me I didn't have to come back for a whole year, which was amazing news! I went back the next summer (2013) and they told me I didn't have to go back for another two years! So I will head back to Gainesville this coming summer (2015) to do another check up. As for right now, the pacemaker will stay in my stomach for the rest of my life. The battery will have to be changed out in about 7 years but that will be an outpatient surgery and shouldn't be a big deal. I'll cross that bridge when I get there.
Summer 2014: In June, my back started to hurt really bad and it felt like the pain I had with my ovarian cyst almost 5 years ago. I went to my family doctor and had an ultrasound done and they didn't find a cyst. I did a urine sample and had a UTI, gross I know. I was put on some antibiotics but the pain in my back persisted. In July, I went to my family doctor again and I told her I wanted an ultrasound done and x-rays. I know my body really well at this point and know what I need. Nothing came back from either of those tests. We did another urine sample, nothing. So she said it must be a muscle strain. I didn't think that was it at the time and I still don't. I went to PT for about a month and a half and the pain subsided for a little while. In the last week it has come back full force. I have also had headaches almost everyday for a few months now.
Now on to my current situation. My brother was diagnosed with a syndrome called POTS last November at the Mayo Clinic in Minnesota and my parents and I think I have it as well. POTS stands for postural orthostatic tachycardia syndrome. This means that he does not have enough blood volume and his heart has to work overtime to get blood circulated through his body. It actually has a pretty simple solution. Drink a gallon of water a day, eat lots of salt, exercise 30 minutes a day, and take a beta blocker a few times a day. This may not seem simple to most of you but for me and everything I have been through this seems like an easy fix. With all of these problems arising again, my family decided that it would be best if I went to the Mayo Clinic and had a full work up done just like Lance (my little brother who is 17) did last year. Right now I am just holding out until I can get on a plane and fly to Minnesota. I don't know that I have ever been 100% well/healthy in my life and I am hoping that the doctors at Mayo can help get me there. Obviously, I know that I will never be 100% healthy but maybe one day I can feel that way.
I created this blog, not to ask for your pity but to update everyone on how I am doing over the next few weeks and while I am at Mayo. I hope to continue with the blog long after Mayo to keep everyone updated on my life and how I am doing. I want people to know that although I have multiple diseases, I am not letting that stop me from living my life. I had a couple years where I barely made it to school and back. Now that I have the opportunity to do things, I am doing everything I can get my hands on. It is one of the reasons I stay so busy and I wouldn't have it any other way. If you made it this far, consider it an accomplishment :). Thank you for reading! I am sending my love!
Until next time, A
P.S. I'm sorry if there are any grammatical errors
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