In the White Album , Joan Didion wrote, "We tell ourselves stories in order to live," and then proceeded to tell a story about a time in her life when the stories she told herself began to fail.
I can certainly relate to that. My stories of how the world works in terms of medicine, government, family, friends, meaning, everything have failed when it comes to the havoc this illness has wreaked upon my life. I'm sure many people can relate.
I don't have a new story yet. Who knows if I ever will. I hope so. I do know that it's not time to write one yet. I'm in the midst of trying to ride out the Valcyte mood storm. It's a doozy. The depths of depression that I've gone to....
In light of many events in the past 18 months I find myself feeling bitter and uninspired. Is this Valcyte too? I don't think so. I think it's feeling the sense of almost abuse at the hands of researchers, physicians, the government, the silence of people I thought I could count on, and just plain having had it with it all.
I agreed to participate in someone's dissertation research about this illness. This person said he has it too. Turns out not only does he not have this illness (he had gluten allergies, h pylori, and a couple other things) but the whole point of his friggin dissertation is to prove that the illness arises out of psychological trauma-an unspoken one. Had I known this I would never have agreed to participate in his bullshit. To make matters worse he stayed 4 hours. FOUR HOURS!!! And not once did he bother to check in with me to see how I was. I gave him every signal that I could indicating I was done, that I was tired, that I couldn't think anymore. It was like the guest that wouldn't leave. Unfortunately I invited him into my home-otherwise I would have left. Even though I asked what his hypothesis was he refused to tell me until we had completed the endless interview. At one point he said that when he was ill he "didn't have the luxury of taking time off work, so the most he took was 2.5 weeks." He was an asshole, pardon my language. I've been toying all week with sending him an email saying I won't participate in this but I get worried that maybe I misunderstood his premise because of the brain fog.
Then yesterday I go see another doctor. She's very nice-finished her MD in 2007. I hate telling people my story because I get upset at having to retell it. I have to explain why I'm not working, what happened, ect....She says to me are you in therapy to deal with all this? I start crying and tell her I would but I have no income. She asks about depression and I let her know that I'm feeling increasingly depressed and I'm getting scared about it. I also say that I think the Valcyte has something to do with it. By this time I'm almost sobbing. I can't stand it. It's almost humiliating telling this over and over and feeling like I'm not being believed. After all "you look so good." I ask her if I she can prescribe an antidepressant. Let's see, this is the 3rd doctor I've asked now. She says no because she's afraid it might interact with the other medications I'm taking. I just sit there feeling a bit shocked. What? Am I going to be another statistic-how many times do I have to ask for help? Do people realize that some of us spend the day trying to survive it? Trying not to take all the pills sitting in the cabinet, jump of that bridge that waits there, find the rope, or go sit in the car in a garage? Do people get how serious and how hard it is to live with this at times?
So then she sits and proceeds to tell me that people who've had trauma often get these type of illnesses. And that in medicine oftentimes doctors are left to think that it's nothing but depression! What?!
I'm sitting in there with the attractive medical gown on and we're talking. She says to me: "Gosh, you are so calm! I mean wow! I can't believe how calm you are! You could read books to kids and calm them down!" Hmmm. Did she notice that when the nurse checked my heart rate it was 100 beats per minute? Pretty high for a calm person. Or that my blood pressure was borderline high? Little did she know that it took me over ten minutes to get into the elevator. I've always had a fear of getting stuck in an elevator but after the way Dr. Kliman died in addition to the Valcyte creating havoc with my brain I was so frightened to get into that elevator. I asked the security guard if there were any stairs. None that were accessible to patients the guard said. That security guard saw my fear though. She watched me as I paced back and forth, as I sat down on the chair staring at the doors of the elevator, as I walked up to the elevator several times, pushed the button, watched the doors open only to walk away. I'm sure my behavior made her a little nervous as well.
She did tell me she was very concerned about me. Yeah right. When I left the office the doctor said "let me know if you get more depressed." Right, I'll do that.
So I've been feeling bitter and angry and thinking this is unbelievable to be this ill and get hit with "if you just work through your trauma then maybe you'll have a chance." I haven't wanted to blog because of these feelings but it's part of my experience.
I spend my days watching netflix movies on my computer. It keeps me distracted and involved in someone else's life. It helps but when the movie ends sometimes it's a bit rough.
I did have a victory today though I'm paying for it. I was able to slowly walk outside for about 18 minutes. I walked to the library. I felt very grateful about being able to do that. Tonight I've been having a bit of dizziness and some chest pain. I bet it's the trauma causing that. Not the tachycardia.
It's been 18 days on Valcyte now. I haven't heard anything from my cfids doctor about blood test results which is only a little concerning in that last week he emailed me telling me everything is fine. I'm thinking if something odd showed up in last week's blood draw he might be waiting to see what this weeks blood looks like. I got my blood drawn yesterday. The lab is good about getting the results to him quickly so if anything is wrong I know he'll let me know.
I had a lot of plans for my life. It didn't include this. Then I thought I could control this illness-had plans for how this would turn out to.
Turns out I'm not in control. Not in the least.
I do think there might be good news on the horizen for people who suffer with cfids. It might not be much but if it gives us some hope for the day or a couple weeks-that's not a bad thing. Anyway, the Whitmore Peterson Institute in NV will be presenting at the CFIDS Conference in March. I really wish I could be there. There will also be some new research presented with very promising results of the Methylation Protocol. The Whitmore Peterson people will talk about their facility and a test for CFIDS. In other words there is a test which PROVES this illness exists. It may not be on the market for another year or two but it's out there. The Whitmore's daughter was diagnosed with CFIDS at the age of 12. They donated 5 million dollars to the Institute. So all of you who have access to people in your companies make sure the Whitmore Peterson Institute gets added to your companies list of people to donate money to.