My Background Story

Update July 25,  2013 - I have written a new post outlining my entire medical journey that I will be keeping up-to-date.  You can read it by clicking here!

October 5,  2011
     All of this craziness seemed to begin when I was twelve years old.  Oh, how I loved going away to camp, but camp didn't always love me!  I was always coming home with some kind of malady.  In July of 2003, I returned from camp with a very large bite on my leg.  It was diagnosed as a spider bite, so I was given a course of steroids along with antibiotics.  It seemed to clear up without any issues, so we didn't think too much of it.
     A couple of months later, I came home from horseback riding camp with a staph infection in my throat... I wasn't the only one who was sick, though.  The horse that I rode and took care of died unexpectedly the day after I left camp!  The camp staff never figured out what it was that he died from.  Following my staph infection, I had a sore throat for months and months and never fully bounced back. But I still lived a fairly normal life, participating in school, dance, and swim team.
     In January of 2005 I sprained my ankle in dance class.  It wasn't a typical sprain, though.  A couple of days later, it began dramatically changing temperatures and colors, and the pain was so intense that even the touch of a cotton ball could bring me to tears.  I was diagnosed with Reflex Sympathetic Dystrophy (RSD), a neurological pain condition.  Basically this means that my body does not properly stop pain signals, so the pain keeps intensifying even after the original injury heals  Eventually my ankle pain resolved after being treated with tons of medications, as well as nerve blocks and weeklong epidurals.
     But soon I completely lost my appetite and I developed horrible stomach pain.  For a while I was living off of cereal and baby food, so I lost a lot of weight and became quite malnourished.  When an endoscopy didn't provide an answer to what was wrong, I was diagnosed with RSD in my stomach, too.  Between the pain and side effects of medications, it became nearly impossible for me to go to school.
     After a year and a half of constant stomach pain, my family and I discovered that hyperbaric oxygen treatments helped to control my pain!  These treatments were an immense help, and I was able to live more normally.  But in the fall of 2008, hyperbarics stopped helping.  Gradually my pain spread to my whole body.  What if this pain wasn't only RSD?  Maybe there was something else triggering all of this pain.  So the search continued.
     It seems I am a rather puzzling case.  Consequently my family and I have traveled all over seeing doctors and seeking answers.  Meanwhile, the symptoms kept on coming.
     In April of 2009, I developed a headache and severe light sensitivity.  It hasn't gone away since!  If you have ever had migraines, you know how much they can limit your activity.  These headaches have made it very difficult for me to leave my 15-watt lighted room for very long!  But recently I received a very generous gift of prosthetic contact lenses... What a blessing they have been!  If I wear these lenses, I can be in natural light without wearing my big dorky blue sunglasses!
     In March of 2010, I tested positive for Xenotropic Murine Leukemia-virus Related Virus (XMRV).  This is a newly discovered retrovirus, and there is quite a bit of controversy over whether or not the testing is accurate.  It is possible that I contracted this retrovirus, along with Lyme disease, when I was bitten at camp back in 2003.  We still can't say for sure that I have XMRV, but we do believe that the bite most likely put stress on my body, weakening it enough to develop these other illnesses.
     Also in March of 2010, I had gastric motility testing.  I was diagnosed with gastroparesis.  What a relief it was to finally have an answer to why my stomach had been hurting so badly these past years!  It was an odd sense of relief, though... Nobody wants gastroparesis.  This mean that my stomach is essentially paralyzed.  By this point, I was only getting my nutrition through an all liquid diet.  Ensure Plus... Yuck!  Eating became so painful, it took hours for me to drink a few ounces of liquid.  My weight was dwindling.  I made the tough decision that I couldn't maintain my weight by myself anymore... I planned to get a J-tube, a feeding tube that bypasses the stomach and feeds straight into the jejunum.
     But things don't always go as planned!  In June of 2010, I had three procedures done at once:  I had a spinal tap, a liver biopsy (we had discovered my liver was enlarged), and I had a port placed so I could receive IV immunoglobulin therapy.  I had a very bad reaction following these procedures.  I had full-body paralysis for a week, and it took me a month to be able to walk across a room.  I have had RSD and dystonia in my right arm since then, and I have lost the ability to bend my elbow. My GI doctor, my family, and I realized that it wasn't a good idea to go through with the feeding tube surgery after these reactions... We weren't even certain that the tube work properly because of the severity of my gastroparesis.  So since then, I have been receiving total parenteral nutrition (TPN), meaning I am fed through a central line into my veins.  TPN is quite risky, but it is keeping me alive until I have a better option.
     For quite some time I had been having consistent pancytopenia (low blood counts), but we did not know the cause.  But in February of 2011, I became very sick with high fevers, high liver counts, off the chart inflammation markers, and dangerously low blood counts.  I was in the hospital for a couple of weeks until a blood transfusion calmed things down.  I had a bone marrow biopsy, but they did not get a decent sample.
     In July I had another flare of these symptoms.  After a repeat bone marrow biopsy, I was officially diagnosed with Hemophagocytic Lymphohistiocytosis (HLH).  This is an extremely rare blood disorder, typically found in little babies.  This basically means my bone marrow is being destroyed. My hematologists suspect that my bite at camp may have triggered an immune response in the form of HLH. Right now I am doing daily injections of a rheumatoid arthritis medication, which is keeping me stable and out of the hospital for the time being.  The hope is that I will be able to gain enough weight and strength to receive the chemotherapy and, if necessary, a bone marrow transplant to cure me of this disease.
     Most recently, in August of 2011, I was diagnosed with mitochondrial dysfunction.  Mitochondria are the powerhouses of our cells.  When the mitochondria don't function properly, the body can't use energy the way it is supposed to.  I still need to have some specific genetic testing to shed more light on this issue. But I have probably had this problem for my whole life, allowing me to acquire all of these other conditions.
     Despite being so sick, I really love life.  Things don't seem to keep me down for too long!  Sometimes I think I don't realize how scary all of this actually is... And that is alright.  I am so very eager to be healthy someday, but still I have so many things that I enjoy, I can't help but smile!  I have a sweet little Double Doodle puppy named Alice.  I am training her to be my service dog!  She makes my days so bright.  I love her so very much!  I have a lot to be thankful for!  God has given me a beautifully unique life.

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