More news on the illness frontier. I use that word on purpose. I looked it up and here's what wikipedia says about it: In the United States, the frontier was the term applied by scholars to the impact of the zone of unsettled land outside the region of existing settlements of Europeans. That is, as pioneers moved into the frontier zone they were changed significantly by the encounter.
One might wonder what the hell I'm talking about. What does an encounter with unsettled land have to do with having an illness. This illness is "unsettled land." Pioneers were transformed by their encounter with the newly unsettled land. Dealing with all the ups and downs of this illness brings me into the unsettled land within myself. I visit all my fears. I dont' know if I'll be able to navigate the territory. Ultimately though my enounter with this illness is and will continue to transform me.
I'm dizzy as I write-I can feel the lack of oxygen. It's strange and kind of freaks me out sometimes when I think about what is happening in my body. Moreso that I can't do anything about it but rest, use my little energy wisely, and do everything I can to combat the anxiety that goes with this.
There is more information on what might be and probably is happening with me. It looks like I have viral myocarditis. That explains many of the symptoms I have. Now it's a matter of finding out what viruses are involved. I already know that HHV-6 is. I need to get tested for two other viruses (there are actually many viruses that could be involved): parvovirus B19 and enterovirus. Getting tested for parvovirus requires a blood draw. Simple. The enterovirus requires a biopsy-not so simple. The other alternative is to get an upper endoscopy and then have slides sent to Georgetown University. It may be that people who don't respond to valcyte (and who otherwise fit the treatment parameters) have an enterovirus.
I have the name of a cardiologist. Once we switch to the PPO Insurance I will contact him to schedule an appointment.
Yesterday my family all came here for a picnic. It was great to see them. I love them and have missed them terribly. I wasn't feeling very well though I tried to hide it. I ended up having to leave after a couple hours. They all understood. It was sad for me to leave though. When I got home I got right into bed. I didn't even take off my jeans. About an hour later I woke up and felt like crying. I realized they were probably still picnicing and I was less than a mile away but feeling to sick to be around anyone.
The difficulty with sleep has returned. It's one of the conundrums of this illness. Being so fatigued and feels so unwell but unable to sleep. It's because the nervous system is involved. As is often the case when I can't sleep I kept going over the past few years of my life searching for some clue as to what happened. When did I get this? Was there some clue? I remember when I started having symptoms. Sometimes I get obsessed with trying to find out how this happened. I have to stop myself because it yields no good information.
Of course hearing that I have viral myocarditis has brought out worst case scenario imaginings. It's a tragic legacy of my mom's quick death to cancer. They think that those athletes who suddenly drop dead of a heart attack etc... have had viral myocarditis. But lots of people live with it too. I'm lucky that I am finding myself seemingly to be in the right place at the right time. If I don't have the enterovirus, there's a good chance that valcyte will help this.
I pulled out my dissertation today. I'm pretty proud of it and would like the opportunity to work on it and get it published as well as publish articles.