My story

So I have posted a few blogs lately and realized I have never really posted my story. I am 28 years old and have led an extremely interesting life. I graduated from Brigham Young University-Idaho in 2006 with my bachelors in communication and from Southern Utah University in 2011 with my masters in professional communication. I love being with my family especially my nieces and nephews. I have had many grand adventures over the years from camping to triathlons.

I have also had my share of odd medical occurrences over my life time. I had seizures as a child that disappeared by the time I was in kindergarten. I caught viruses easily growing up. I had severe anemia when I was 19 which resulted in me fainting in a mall. I ended up with a fractured skull and subdural hematoma. I had my tonsils out when I was 21 which was the result of a severe infection. In 2008, I was diagnosed with asthma which gets difficult at times.

Things started getting medically weird when I was 26 and in grad school. I ended up going to the emergency room one night with chest palpitations and the feeling of racing heart. I was shaky when I get there but was released after a few hours with a holter monitor.  The holter test showed sinus tachycardia of unknown origin. An examination by a cardiologist showed a nodule on my thyroid, which he thought to be the cause of tachycardia form the nodule pressing on my trachea. The theory was confirmed and I had part of my thyroid removed in May of 2011. I am able to deal with the lack of thyroid hormone with only 75 mg of Synthroid.

The fall of 2011 was good for me. I was teaching adjunct at Utah Valley University, and working for two companies doing advertising and public relations. Then I started experiencing some neuromuscular symptoms in December. I had a virus at the end of November. By mid-December I started having muscle cramps and aches. I thought maybe it was just lingering symptoms from the virus.

Things got considerably worse in January when I couldn’t move my feet and was experiencing marked weakness. I went to my general physician who was the first to suggest I might have Guillan Barre. I was able to make an appointment with a neurologist two days latter.  I was having trouble balancing as a walked so I had to use a crutch that we happened to have around the house. I went to Dr. B that morning where he agreed that I might I have Guillian Barre. An EMG showed evidence of demyelination in my lower legs. I was admitted to the hospital. By the time I started IVIG treatment that night I can’t move my feet  and was supper weak in my legs. I also have extreme pain in my lower back, I continued with a total of five IVIG treatments and was able to make some progress with walking with the aid of a walker. There was some doubt to the diagnosis of GBS since there was not elevated protein in my CSF. I spent a total of 7 days in the hospital. I was lucky as the paralysis was arrested before it got above my waist. 

It's been a tough road since. I made some initial recovery, but in April I started to go downhill again with weakness, body jerks, muscle tightening, pain, and difficulty walking. I had urinary and bowel problems along with mild swallowing weakness. I have trouble sleeping through the night from the abnormal muscle tightening, pain, stomachaches and regurgitation. So I was referred to a new neurologist. After tons of tests she referred me back to my doctor with no answers. She did suggest physical therapy. I had had some in the hospital, but didn't continue it when I was released because of the doubts about the diagnosis. 

The physical therapy has done wonders for me. I have my strength for the most part back. I am still lacking the endurance. My neurologist, Dr. B, has found that I have abnormal EMG, mild dysmotility, and high levels of pyruvate. Some clues but no answers. He's not giving up on me though. 

So here is my symptoms right now:

Fatigue

Muscle pain

Ringing in the ears (only when I crash)

Tingling

Abnormal muscle tightening

Dysmotility 

Stomach pain

Regurgitation and reflux

Cold intolerance

Headaches

Migraines

The current theory is that I had Guillian Barre which has caused some mitochondrial issues to emerge. So we are currently treating my symptoms with the Mito cocktail and it seems to be helping. 

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Blue Sheep

I wrote a blog earlier about how having an undiagnosed condition can be lonely. I took a lonely walk this morning wishing I had someone by my side. I started out thinking the only way I was going to get some answers about my health was if I was dead and they preformed an autopsy. Then I walked by a herd of sheep and noticed that there was one who had his back spray painted blue. And then it hit me. I am the blue sheep within my family and social circle. I have similar capabilities to the other sheep, in fact I look just like the other sheep. But most people can't see that blue streak on my back. They don't know how hard I fight to be normal each day. They don't know what it feels like to loose out on dreams because others don't understand my blue streak.

For some reason I have a condition that sets me apart from the herd. It's not as apparent as someone who is in wheelchair or has cancer, but it is real. It causes me pain and fatigue. It causes my pyruvate acid to be abnormally high. It also causes me to feel disconnected from the rest of the world.

Just when I was starting to feel really low I saw another spray painted sheep wander out from behind a bush. I began to wonder how many other people out there feel just like I do. There must be others dealing with all the pain and stigmas that accompany having an undiagnosed condition. In that moment as I stared at the two blue sheep I knew that I could be ok if I could connect with other people who are experiencing the same fears and sadness that I felt. How do I find those other blue sheep to know that life doesn't have to fall apart just because I don't have a name to describe what's going on with my body? My hope is that through this blog I will be able to connect with others and form a support group. It's a lot easier to travel the path with a friend. It's a lot easier to face the fear of being undiagnosed with other blue sheep.

Courage

So I haven't been feeling very well over the last few days. My neurologist is pretty sure I had a migrane. I am not feeling very excited about adding another symptom to my list without knowing what is causing my body to be so out of sync. Right now my neuro is leaning towards a mitochondrial problem, but it is a difficult diagnosis to make. Tons of testing is required, but he hasn't found anyone in Utah who can do it. We are now waiting for the Mayo Clinic to call him back.

A plus side to my being down was that I came across a quote while I was watching a movie to pass the time. "Courage is not the absence of fear but rather the judgement that something else is more important than fear. The brave may not live forever but the cautious do not live at all." The quote struck a cord with me as I thought of how I can't let my mystery disorder rule my life. I need to be brave and fight through whatever is going on with my body. I am finding this hard to do when the pain and fatigue get unbearable. But I am not going to let it rule me or my emotions. I don't want to live my life in fear of whatever this happens to be. Courage will be my companion through this trial.

Loneliness of an Undiagnosed Disorder

Living with an undiagnosed disorder is not something that was ever in my plans. And yes, I called it a disorder. Disease sounds too harsh for me to say out loud. I am still hoping this is a passing visitor and not a permanent resident. I have tried my hardest to stay upbeat and to make the most out of my situation. But I have discovered that being undiagnosed is often a lonely road. 

First of all, people don't always understand what it is like to have a condition where you don't know why this is happening to your body. Usually when I tell someone I have an undiagnosed condition they react by saying that it must not be that bad if the doctors haven't found anything yet. What they don't understand is how I went from being partially paralyzed with suspected Guillian Barre Syndrome to having a body that doesn't react well to physical activity. They don't understand that even though I have overcome the paralysis, that I still struggle on a daily basis. They don't understand the pain, fatigue and upset stomach that occur each day for me. They don't understand that I have days were all I can do is curl up in a ball and pray for the pain and fatigue to pass. 

The second reason that having an undiagnosed disorder is lonely is that there is no awareness among the general public. There are no runs, no fundraisers, no telethons (do they still have these?), no anythings to let people know that there are legitimate diseases that remain undiagnosed. I guess what it boils down to is that people just don't know. And I'm not sure how to help spread the word that it is just as tough if not more tough to live with a undiagnosed disorder than it is to live with a diagnosable disorder. 

Life has a way of surprising us. Sometimes these surprises are the things of fairy tales. Sometimes these surprises are still the the things of fairy tales, but the parts of the fairy tales that we deem tragic or unfair. When we talk of Cinderella's happily ever after we tend to not think about all the turmoil she had to go through to get her fairy tale ending. And maybe her tale was mixed with joy and sorrow before the tale declared "... and she lived happily ever after." Right now I am finding that I am living an unlikely fairy tale. I am the fair maiden of my own fairy tale in which I have already had several adventures in life. I have gone to college twice -- once to get my bachelors in communication and then to get my masters in professional communication. While there, I met amazing friends, learned to have fun, work hard and to love life. Along the way I found love, lost it, learned how to cry and then how to mend a broken heart. I have had my share of broken bones, surgeries and assorted maladies. Sometimes life is just plain hard and it is hard to see the magic in our tales, but I believe that if you look for it you will find it.

So I welcome you to my blog. This is a place for me to record my tale -- all the joy, tears, success, failures that make up my unlikely fairy tale. My name is Julia and this is my tale.