Tuesday, October 1, 2013

Twitter and Facebook

I finally created a Twitter account for the little things I want to say in between blog posts. Please follow me @blogwormwood

I've also created a Facebook page where I'll link to new blog posts here and share posts from other blogs and news. There are already a lot of other good pages that do that, so it's mostly for new blog alerts. 

Thanks! I'm working on a blog about my wedding and honeymoon that will hopefully be up in the next week. In the mean time I'll be catching up on all your blogs and trying to figure out what exactly the IOM contract is. 

Tuesday, August 20, 2013

Am I not your donkey?

I have found the character who I identify with most in the Bible: Balaam’s Donkey. I know this must seem confusing, but let me explain. The story of Balaam and the Donkey is an excellent metaphor for the trouble with invisible illness.

Two years ago, when I was just starting to get into audiobooks, I got this idea that I'd listen to the entire Bible. Not for any religious reasons. Actually I think my main motivation was just to get better at Biblical trivia questions on Jeopardy. I'd also read a lot of "100 Books to Read before you Die" type lists and the Bible was usually on top. 

Of course, I didn't finish. I couldn't tell you how far I got. God help you if you lose your place in any audiobook, but especially The Old Testament. I gave up somewhere around First or Second Kings. Not because it wasn't a good listen -- it really was -- I think I just got tired of losing my place.

I didn't have an extensive Biblical education, but I did recognize most of the stories. Many were new though, like Balaam and the Donkey. One night, home alone, I'm sitting on my usual spot on the couch, listening to far away stories about King Balak and the Moabites and the land of Canaan, when I suddenly start crying and experiencing this completely unexpected catharsis. Because there it was so neat and compact and allegorical: the story of my diagnosis with CFS. 

Context: Basically, Balaam is traveling on an important errand, and he is riding a donkey. The trouble arises when God keeps putting an angel in their path, and only the donkey can see it. 

 And the donkey saw the angel of the Lord standing in the road, with a drawn sword in his hand. And the donkey turned aside out of the road and went into the field. And Balaam struck the donkey, to turn her into the road. Then the angel of the Lord stood in a narrow path between the vineyards, with a wall on either side. And when the donkey saw the angel of the Lord, she pushed against the wall and pressed Balaam's foot against the wall. So he struck her again. Then the angel of the Lord went ahead and stood in a narrow place, where there was no way to turn either to the right or to the left. When the donkey saw the angel of the Lord, she lay down under Balaam. And Balaam's anger was kindled, and he struck the donkey with his staff. Then the Lord opened the mouth of the donkey, and she said to Balaam, “What have I done to you, that you have struck me these three times?”And Balaam said to the donkey, “Because you have made a fool of me. I wish I had a sword in my hand, for then I would kill you.” And the donkey said to Balaam, “Am I not your donkey, on which you have ridden all your life long to this day? Is it my habit to treat you this way?” And he said, “No.”
Then the Lord opened the eyes of Balaam, and he saw the angel of the Lord standing in the way, with his drawn sword in his hand. And he bowed down and fell on his face. And the angel of the Lord said to him, “Why have you struck your donkey these three times? Behold, I have come out to oppose you because your way is perverse before me. The donkey saw me and turned aside before me these three times. If she had not turned aside from me, surely just now I would have killed you and let her live.” Then Balaam said to the angel of the Lord, “I have sinned, for I did not know that you stood in the road against me. Now therefore, if it is evil in your sight, I will turn back.” 

The moral is, listen to your donkey. Trust in your donkey when it has aberrant behavior. And if you're a doctor, give your patient the benefit of the doubt.

I don't know if that's the takeaway the writers intended, or what a minister or Biblical scholar would say, but to me it's clear enough. 

Before I got sick, I was a straight A student. I wasn't perfect, but, as my dad always used to say, I was "practically perfect." I was a good kid and a good teenager. Teachers loved me and I took it for granted they always would. I didn't drink or do drugs or get in trouble with the police. My parents didn't have to worry about me getting into college. I had a pleasant attitude and I did what I was supposed to. I had a good relationship with my parents, I didn't even mind being seen with them at the movies.

And then I got sick, but no one knew it. At first I thought I had mono. But after I was tested three times and the results were still negative, everything changed.

When I started missing school, sleeping through class, and getting bad grades, I lost my favored status with my parents and teachers. It was confusing at first, but I was so tired I didn't have time to think about it much. Looking back though, it's a little bit of a shock to think how quickly I lost their support, and seemed to have instantly switched from good kid to bad kid in their eyes. 

None of my teachers ever took me aside and said, "Hey, is anything wrong?" or "I noticed a change in your grades and behavior, is everything OK?" There might have been a "This isn't like you" but if there was, it wasn't a kind and concerned comment, more of a reprimand.

There's no need to retell everything, I'm sure I've written about most of it in this blog by now. Just a few moments keep coming back to me: a morning when I was lying in bed, too tired to move or talk, and my mom, worried I was missing another day of school, yelling at me, "Why are you doing this to us?" 

My dad, blowing me away by offering to take me to a concert in Chicago to see my favorite band, because he thought I was such a good kid that I deserved it. And then two months later when everything fell apart, laughing in my face when I naively asked if we were still going.

"Why is Alison missing school and failing classes? I guess all teenagers go through a rebellious phase. It was bound to happen."

My chemistry teacher, in a bad mood, calling me out in front of the class: "And Alison! Sitting there with a glazed look in her eyes like she doesn't give a damn." I was surprised and hurt, I honestly thought I'd been paying attention.

"Why is my donkey veering off the road? I guess she's finally lost her mind. It was bound to happen."

I wanted them to do what I couldn't, and what Balaam couldn't. I wanted them to think, "Hey, I know the doctor says there's nothing physically wrong with Alison, but maybe there's something there they can't see, because we know Alison, and she is not like this."

"Hey, why does my donkey keep veering off of the road? She's never done this before. Well, she's a good donkey. Maybe she has a good reason." 

Maybe it's asking too much of them. I know they think it is. I used to cry about these memories to them, and ask for an apology, thinking maybe I needed it to move on. But they still refuse to apologize, because they don't think they did anything wrong. "How could we know what the doctors didn't?" They did what they thought was best for me. They always have. 

I know it isn't good to dwell on the past, and I try not to. I do. But this experience, of finding out just how...conditional it all was -- it's hard to put behind you.

I wish that my parents, a teacher, or someone, had had so much faith in me that they would have said, "I don't care if the doctors say there's nothing wrong; there has to be, I'll keep going to doctors until I find the answer, because I know Alison and she is not like this."

And ultimately, I wish I had had that much faith in myself. But maybe that is too much to ask too. 

Wednesday, May 15, 2013

Health Update / Nasal VIP

It's been a while since I've posted. Ten months actually. I hope this blog isn't totally deserted. I want to try and write more again. I really do. But it's hard.

Why have I not been blogging? Because I'm doing worse? Because I'm doing better? A little of both actually.

The good news is, I feel pretty sure I can say that 2012 is the first year since I've been ill that was not worse off than the year before. It's a huge relief that I am not worse off now than I was a year ago.

I think this is because of the MAF-314 yogurt I ate every day for 4-5 months. My digestion has been improved since then and I think that helps a lot with other symptoms. My KPS is still 40-50. I still can't cook or shop or work or anything. I still spend most of my time sitting around my apartment. But I'm in slightly less pain. I just feel a little more alive and a little less like I'm moving through water all the time. When it's hot, I can get up to open the window without really thinking about it. Last summer and the summer before, opening and closing windows was too much for me.

I've been getting out more. It used to be if I went to a party, I'd have to spend the whole time sitting down in the comfiest place I could find. Now I can stand at parties for a long enough time to socialize. Not like I go to parties all the time, but it happens. It's not as rare as it was last year.

But in some ways I am worse, and all those ways are mental. The last year I listened to more audiobooks than I read. I abandoned my blog. I tried to blog but I couldn't focus at all. Basically what I'm trying to say is I'm having trouble reading and writing. And organizing and decision making, which you need for writing.

I don't know how you guys do it. I mean I don't know how people with CFS can write at all. I've read what they say they do. Writing in bed, writing with eyes closed, writing one or two sentences a day. But I'm still trying to write the way I used to when I was healthy. The results aren't as good but I can't imagine writing something coherent one or two sentences at a time. I know people do it. Maybe I will someday. But for now it's stream of consciousness.

I'm grateful I even have a stream of consciousness right now. Most days my mind is totally empty. I guess if I were a taoist monk, this would be awesome, but since I want to write blog posts and have interesting conversations with people, this is not good.

I've given my mind a jump start with some coffee. I'm jittery, but at least I'm writing. And I haven't eaten. I set a timer, giving myself thirty minutes to write this, and when it goes off, I have to eat. I always have to force myself to eat because digestion uses up all my energy and totally wastes me for the next five hours, when it's time to eat again anyway.

I have ten minutes left before I have to stop writing, post this, and eat something. What else do I want to say? I guess I should say I'm getting married this summer to my boyfriend of four and a half years. I'm very happy. We both are. (Yay!) But I could also do a whole blog post about marriage/wedding related CFIDS issues. Another time. I also want to do a post about not having a job. There is so much I want to say, but I guess this is good for now.

I had my annual visit with Dr. Cheney in March. Dr. Shoemaker's Nasal VIP study had just come out and Dr. Cheney was excited about it. He looked for and found CHVI in me which means I probably have CCSVI. Which basically means that for some reason, my blood isn't pumping normally through the veins or arteries in my liver and brain. The VI stands for venous insufficiency. Like the blood doesn't have enough momentum to go the direction it's supposed to be going so it slips backwards a bit. That's my understanding of it. I watched my echocardiogram, I saw a vein turn blue when it was always supposed to be red, or maybe it was the other way around. Turned red when it is always supposed to be blue? Either way, it's a good explanation as to why digestion is such a disaster and concentration is so difficult. Don't underestimate the importance of proper circulation.

Dr. Cheney is starting a nasal VIP study of his own. It's just a nasal spray that widens the pulmonary artery. I think. Something like that. Sorry this is not more exact. Maybe I can go back and edit it later. The theory is if the artery is widened, the venous insufficiency could be fixed and cardiac output and energy could be improved. I was excited to partake in the study at first, but now that the time has actually rolled around I've decided to wait first and see how other people do. Maybe my body needs my veins and arteries to stay how they are. I'm in a good place right now, relatively speaking, and I don't want to take a chance on messing it up. A few years ago I would have tried any drug, risked what little health I had if I thought there was a chance of getting even a little better, but I think differently now.

Times up. Time to nourish/poison myself. You know what I'm talking about.