Nobody likes to read a story or see a film where there is no adventure, no intrigue and where nothing really ever happens. The trouble is that when it comes to our own adventures and intrigues the temptation is to want them to be tame and convenient. We are human, therefore we yearn for the proverbial ‘happily ever after’ right after the ‘once upon a time.’ It seems to be all too easy to forget that life, as in stories, has a middle section. This middle bit, while interesting to a reader, is usually very unpleasant for the character going through it. So it is with our own personal stories. The “middle bit” is usually very unpleasant. 

This past week was a series of those “middle bit” days. If I were a character in a novel it would have been an interesting read. Living through it was just plain horrid. I have been more sick for the past week than I have ever been. In 21+ years of being sick, I have never been as violently ill as I was the past week. What I don’t know is why. (My best guess is that the stress of the prior week in addition to the cumulative effect of Ampligen over the past 3 months produced a perfect storm.) All my lymph nodes went crazier on Monday night than ever before. From my head to my knees lumps of varying sizes popped up. The most frightening thing that happened though is that my tonsils and lymph nodes of my head and neck swelled up so much that I felt like I was trying to suck air into my lungs through a straw. My fever shot up to 102 and hovered there day after day. The pain would have been unbearable had I not been terrified of dying from lack of oxygen.

I skipped the Tuesday infusion and had my dose reduced to 50 mg on Friday. I upped the infusion time to one hour. So far, I have been less sick. My family honestly thought I was going to die this past week. The family has now set up a schedule whereby I am never alone. They have also instituted an emergency plan of what to do in case my airway disappears again. Having medical professionals in the family can certainly be a boon to survival. 

Despite all these things that have happened to me I still believe in Ampligen. I want it to be approved and available. Getting my body to cooperate with Ampligen is the real twist in this story.    

While I am less sure of how everything is going to work out, I am more sure that everything will work out just as it is supposed to. In the meantime, I am counting my blessings and focusing on the last sentence in the last chapter of my personal story book – “and she lived happily ever after.”    

Sophie

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