Tuesday, December 29, 2009

My name is Sara. When I was about 3 years old I had a tick embedded in my neck for about 24 hours. I was playing in a hay stack at my grandmas in Autumn. I went to the doctor and he pulled it out and said just to rub alchohol on it and I would be just fine. Not long after when I was about 4 or 5 I started getting kidney infections over and over. I got high fevers that would make my neck stuck in a position and I was unable to move it. When I was in 4th grade I missed alot of school because I was sick, because of their strict attendance my mom pulled me out and I went to private school. When I got to 8th grade I went back to public school. I started getting sick alot and missing out on teenager stuff, dance, guitar, tae-kwon-do, singing, piano, riding bikes, all the stuff I loved. I wanted to start soccer but I was just sick so much I decided I would wait until I could get over what ever I had. I finaly got diagnosed with mono. I figured it was from drinking off of my friends water bottles that we found out had mono. I had the worse stomache aches and I was so fatigued. I started doing treatments for mono and epsteem barr. The 2nd semester of my freshman year in January 8 2008 I had my appendix removed, They said it was seeping. My family and I were so excited thinking maybe this would fix my stomach pain and how sick I had been feeling. I ended up quiting dance because I just couldnt bounce back. Months went by and I just kept getting worse. Going from doctor to doctor hoping for some answers I got nothing. I decided to start online school and had the hardest time focusing and I was getting A's it would just take a really long time. I started my job in July 2008 at a dog boarding place. I loved it so much and still do. I never felt good but it wasn't anything to keep me from doing stuff. In December 2008 I just started feeling awful again but decided to try and go back to public school and keep trying to work on my online school. Spring break in March 2009 came and I went to Utah to stay with my sister. I felt sick everyday and had to miss out on alot of stuff her and my niece were doing. The next week I ended up in the hospital. The next day we did a hidascan and found out my gall bladder was only getting up to bout 7% and I had it removed the next day. Then me and my mom were really excited thinking maybe this will fix everything. I was throwing up and blacking out so they kept me overnight after my surgery. The next day I felt sick I told them and my mom that I was just really sick and I felt awful but they discharge me. A couple days later my tongue was white with sores and my throat had over 13 puss pockets on it. My belly button incesion was infected also. We went to the doctor and the next day I was feeling somewhat better after being on antibiotics for awhile but then a week later I was feeling really sick again. I stopped the antibiotics thinking that was causing it. I tried going back to work a monthish later and just was getting so sick. I went to the ER and doctor many times until they started being rude. In May we went to a walkin night clinic and a doctor that was filling it for the usual doctor did a urine test and found sugar,blood, and high amount of white cells. He sent it in to be cultured and gave me a shot that made me feel alot better that night. The urine came back showing group B strep in my urine. We treated it and again me and my mom thought it would make me better and we were hopeful. After treating that I was still so sick and we went in to see my doctor. I told him my symptoms that I could remember, Stomach aches that were severe when I ate or drank, Joint pain, sick, sore throats, heart pain/irregular beating, fatigued..so on and he said he was going to research and test me for Celiac disease (IBD) and probably some more. A different doctor had scheduled me for a cardiologist on June 4th so he said to keep that appointment and he'd call me with the test results. The cardiologist said that my heart beats irregular even in my sleep (a monitior I wore for 48 hours) and we did a ultra sound on my heart that was normal. He said it must have just been whatever illness I have causing it. I went to Utah for a month and went on the Celiac disease to see if it would help then my doctor called and said I had a really high positive for Crohn's disease. We were so happy for an answer. We got scheduled for a G.I. specialist in July 2009 but before that I ended up in the ER many times in 2 weeks dehydrated and with stomach pain that they admitted me in the hospital here. The doctor said that he was going to put me on steriods for a couple days even though it would hide the crohn's for any test the G.I. did but he had to help me. My liver numbers were suppose to be in between 5 and 30 and they were over 200. 4 days being in there I was still so sick they sent me to a hospital an hour away for the G.I. specialist. The G.I. said that they were going to perform a colonoscopy the next day. I remember they wheeled me outta the room the next day into the room where they were going to perform the colonoscopy. I saw a big screen and was listening to all the doctors talking. They started preping me. They put in the medicine to put me to sleep. and more. they said they gave me more than a large adult. and I was still awake. Finally they decided to just go ahead with it and I felt the most awful pressure on my stomach I cried and asked them to stop and they gave me a tiny break. I said can I have another break? It hurt so bad and I just cried. After they got me in a wheelchair and I was so drugged my head kept falling and they had to hold it up. Finaly when I was more awake I was just throwing up over and over. I would eat and 12 hours later I would throw it up undigested. The colonoscopy show proctitis (IBD) but not crohn's (because of the steroids) They did a test to see how fast my stomach was working and it was really slow. This is where the doctors decided to start saying it was all in my head. 10 days later they sent me home. I cried for hours that night in pain to where I was so exhausted I just fell asleep. The next day I cried and cried I was hurting everywhere and I was so sick. My mom called the doctor from the hospital I had just left and he said to get me down to a hospital 3 hours away for the pill camera. I went to a local hospital and got fluids and pain med to help me on the trip. The pain med wore off just as we were getting there and I got admitted and had to tell my story 2 different time at midnight and they the nurse came in the middle of the night saying they had to put a NG tube (tube down my nose) to put golytly in it. It hurt. I had that in a few days until they said they gave me too much because I was throwing up non stop (nothing too new) and so they took it out. I wasnt eating or drinking. I weighed 145 in March 2009 and I was down to 120 in July 2009 and 110 in August 2009. They started doing tests and tested me for a whole bunch of things that were positive. We found group B strep in my urine for the second time. They did xrays. They had physchatrists coming in lecturing me and making me keep the light on (even though I had headaches and light sensitivity) They had a calorie count threatning to put down a feeding tube. They were forcing anti depressants down me that made me stop breathing twice in a night. Finaly 3 weeks later we convinced them to do a pill camera. We did that and it came back normal (steroids and crohns medicine) So the doctor said I could go home. I was way sicker than when I was admitted and they said just to take miralax for years everyday until my stomach worked again and go to a therapist for chronic pain. They had their minds set on chronic pain. I told them I had mine on how sick I was. I wanted to stay one more night hoping for some relief and for IV fluids which they wouldnt give me. So the next day I rode the 3 hours home crying in pain because I had no pain medicine, I was so dehydrated, and just sick! We went to the ER that night and got fluids and pain medicine. I was scheduled to go see a doctor we've had for years that was an hour away. I tried getting ready and ended up on the floor in pain. I told my mom I couldnt go and was crying. I went and laid on the couch and all the sudden I realized I couldn't move. I managed to tell my dad to get my mom and I whispered to her "I cant move" and I just cried. My dad carried me to the car and my mom drove. I asked her where we were going and she said she didn't know. I dont remember anything after that until we got to the doctor and he carried me in. I was nearly unconcious. He did test and found out that my kidneys were shutting down running at a very low number and that my body was eating the stuff around the nerve which would explain why I was paralyzed and my stomach wasn't working and I was starving to death from throwing up everything. They got me on an IV. I couldnt move anything not even my tongue. Finaly I could eat soup and not throw up. That night I could move my arms. My mom would have to wheel me to the bathroom because I could barely use my arms and my legs were usless. I stayed there for a week on IV's. The doctor told us that if I would have just rolled my eyes back the day I came in I wouldve been gone and I wouldnt have survived it through the night at home or the hospital. They did another test and found Chronic Lyme Disease. Now I am getting IV's weekly and taking over 70 pills a day. I am doing much better though I still do have symptoms but you cant expect me to be 100% better in just a few months after having it for over 14 years. I am greatful to be alive. I am greatful for my doctors, my nurses, my family, my friends, everyone at my work, and other lymies. As hard as my experience has been I wouldnt trade it because it has made me stronger, brought me amazing friends, made it so I could help others, and i've just grown so much. That is some of my story.

4 comments:

Rick G said...

Well you have been through alot. Much more than anyone should have to go through to get Western Blot test. I hear this story over and over and am always struck with the same thought. Doctors just do not know what Lyme looks like. Well you are on the recovery road as well as I am. We'll get there, some how, some way, at least we know what "IT" is. Hang in there, and Happy New Year.

SaRa MaRiE said...

Hey Rick!
Will you join my website and put your story on it? www.lymieteens.ning.com
Its for anyone with out without lyme. Im sorry you have this awful disease.

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