When I open up on my blog and in turn, open up my heart, to let my emotions and my world spill out before me, I try to find a level place to begin from. Just like this horrible disorder, Dysautonomia, I too have ups and downs emotionally. But I think it is true to say that basically, even though this whole situation sucks (and I hate that word!), Jesus and hope are my anchor. My beliefs, my feelings, my outlook are anchored in His teachings and His promises. That being said there are days that I am in fact, 'Debbie Downer' as my friend Alex calls it. But Alex also pointed out that sometimes, there is in fact no news but bad news. She had a point. And that is where I am right now.
To try and explain how I am feeling physically at the moment, I must go back a little and give you a brief history. I may describe some things that are unpleasant. It isn't meant to shock anyone or disgust you; I am just trying to provide an accurate account.
On Sunday, October 8, 1998, I woke up in the middle of the night with severe stomach pains. They were overwhelming. I had never experienced such pain. I couldn't lay still; I could stand up. I paced the floor. The pains were stabbing and seemed to go through my stomach and into my back. After a few hours of stomach pains, dry heaves and very little vomiting. The pain only intensified and I began to feel very strange. I was becoming confused. I couldn't speak in clear sentences and I was camped out on the bathroom floor. Then all of sudden I felt the urge to use the bathroom and when I did, something happened to my body. I went limp while sitting on the toilet. My parents had to take care of my personal needs and they carried me back to bed. When I regained consciousness, I felt like I was dying. I began begging my parents not to let me die. My parents, not knowing what was going on, quickly took me to Children's Hospital.
My blood pressure was extremely low and I was in shock. The doctors were a little dumbfounded. They didn't know what was wrong or what had happened. I was admitted to the hospital and I was tested for Addison’s disease. They had come to believe that perhaps I had suffered from an Adisonian Crisis. After 5 days in the hospital and many tests, the doctors were pretty sure that Addison’s disease was the reason for this particular spell as well as my preceding health issues like fainting and fatigue. However, a week after I was discharged, the results from many blood tests were in and it turned out that I did not have Addison’s disease. And from that point, I was sent to a cardiologist who diagnosed me with POTS, a particular form of Dysautnomia.
Now, that story is important because once Addison’s Disease was ruled out, the episode that landed me in the Special Care Unit at Children's was not looked into any further. It was assumed that it was a one time occurrence and had been caused by a sudden drop in blood pressure because of the Dysautonomia. But...that was not the case.
For 7 years, I had one of those spells, once a year. They happened the same exact way, every single time. They occurred between the months of October and December. They began between 2am and 4am in the morning and lasted anywhere from 4 to 6 hours. A peculiar symptom that also accompanied these spells was a HUGE burst of energy during the day, prior to the spell at night.
In about 2005, the spells moved a few months. They began occurring between March and April and were exactly the same. We continued to seek for medical experts and their opinions but no one could (or has) been able to give us an answer.
Since 2007, these spells have lost their timelines. They now happen any time of year and multiple times a year. This is the type of spell that I had on Christmas day and I had another one on Saturday. Saturday's spell was one of the worst in several years.
Besides the fact that it is absolutely humiliating to allow my parents to see me in such a way and to take care of such a basic and personal need, these spells terrify me to no end. I feel like I am dying. I can feel my whole body shutting down. There are not words to describe it.
But these spells don't just take my dignity, comfort or safety for a few hours one night and then it is over. No. They ravage my body and somehow I have to fight my way out of a very dark and very deep hole.
I haven't been out of bed, except to go to the bathroom since Sunday morning. I eat in bed, I brush my teeth in bed, I even sponge bathe in bed. I am so tired my eyes hurt. The noise from the television is too taxing. I lay in darkness and I am fine with that. I am not bored or lonely. I am so tired. I try to sleep. My days and nights are one in the same. And all I can think is that one day that has passed is one day closer to feeling better again.
I didn't mean for this post to be so dreary but I suppose I am just dreary, right now. And I know that I say I am not feeling well so very often and I get tired of saying it.
There are so many things that I want to be doing, seeing, experiencing and once again, I am left waiting.