Or, how these things combined can be a recipe for disaster.
My profile on a social networking site had been getting a serious amount of “hits”, requests and messages this year. Most I was just observing, some were quite genuine and I kept my communications at arm’s length. I have a fairly unique last (maiden) name, so who knows, maybe that was the reason that I was getting more attention than I have in years past, because I’ve been a member of this particular site since 2000.
I am also actively engaged in advocacy and support on a forum that is specific to Hepatitis C, supporting others with information, moral support and general socialization. The forum in particular is fairly stringent in not allowing “junk science” to be advocated and for the most part, it is fairly sedate, being run by people like myself, who have treated successfully and are empathic towards the newly diagnosed or their beginning journey of treating for the disease. Knowledge and experience is a powerful and valuable in supporting those that are facing the disease, treatment or just wanting some information. The people that run the site have all managed to beat the disease, treating successfully and are very knowledgeable, keeping up with the latest news, trials and other information that is important to those that need to know what is in store for them. They're really a great bunch of people and truly have the fortitude to continue to post over and over again, support that cannot be measured.
I’m very open with my experiences, look back on much of my treatment phase as what I tend to describe as a bad dream- it is a brutal treatment, but I had the best of care, from the best medical facility in the world and many, many doors opened for me- due to my experience. I whined, complained and trooped through treatment the best I could, took an experimental protease inhibitor that was on trial, fought to be the experimental test subject (along with 250 others in the U.S.) in the second trial on human subjects. I didn’t find this drug trial by accident, either- all my time on the internet wasn’t spent looking for people from my past, much of it was spent researching the disease, treatment and basically scaring myself to death.
I managed to get my consult at the best medical facility in the world, within 11 days of being diagnosed, had all the preliminary testing done prior to getting my treatment prescriptions signed, called a friend who is a psychiatrist, because all the research I was doing is telling me that I’m going to need my mood monitored and for the love of God, I’m an emotional wreck anyway. I was due to start treating for the disease in June of 2006, but found a trial that was open for enrollment, talked to my nurse about the study and then proceeded to pester the living daylights out of a nurse who would play a vital role in getting me through treatment and attaining SVR (sustained viral response).
Okay, I know I’m really dragging this story out, but there is a method to this madness- and that is summarily defined as: If I can do it, anyone can. This is simply not true. Some people never can make it successfully through this treatment, some have attempted/succeeded in committing suicide, some get so sick from the sides they have to discontinue and some simply just do not respond to treatment. I just managed to take my support and advocacy too far, bringing it right to my home, my life and fortunately- figured it out quickly enough so it never affected my family or community.
Only 50% of people with HCV will treat successfully- the most common genotype is the most difficult to treat, the other two genotypes have an 80% success rate and have to do ½ the length of time treating. Those of us that have Geno1a, get to do the full 48 weeks of one of the top 3 most brutal treatments for disease.
So, the next entry, I’ll introduce you to the Drug Addled Narcissist and how he came into our lives.
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