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.


  1. Lovely to hear you are marrying your boyfriend, congratulations to you both! Hope this year continues to be better for you.

  2. Good to hear from you, Alison. And congrats on your wedding plans. I saw Cheney recently and he wants me to do the VIP thing, too....but I'm not sure, either.

    1. Now I'm glad I haven't started yet. I would have gone to Newport Beach for testing and apparently people who have gone there have to get tested over again. I still think about doing it though...

  3. Nice to see you posting, Alison. Congrats to you and your boyfriend on your upcoming wedding plans!! Thinking of you and hoping things continue to get better for you.

  4. For me the turning point was taking ribose. I could only take it for four months before I started having food allergies and had to stop. But that seem to be a real turning point in my illness. I've been improving slowly since. I've changed my diet to exclude - sugar, preservatives, caffeine and gluten.mentally I'm so much better. I've have days where mentally I'm 70 percent. My down days are less. I'm still limited physically but on a good day I can cook a couple meals and do laundry.

    1. I don't think I've tried ribose...but it's definitely possible I have and just forgot. I gave up sugar, caffeine, wheat and processed food for a long time. I felt a little better at first but the sugar cravings just got way out of hand, so now I have it in moderation. Caffeine too, or I'd never be able to write! Glad to hear you found something that helps, even if it's just a little.

  5. Congratulations on your wedding, that's wonderful!

    In terms of mental clarity, I know everyone is different but I found that taking 4000mg of Omega3 really helped. The improvement happened so gradually I didn't realise what was causing it but when I stopped taking the Omega3 for a few months I clearly noticed that I slipped backwards. I went from being unable to focus enough to read more than a few lines of a newpaper article to being able to read a book without much difficulty. Its gradual & its expensive but I wouldn't be without it now.

    I really hope that you continue to improve & the best of luck making the tough decisions in terms of your treatments!

    1. Thanks Miriam! I took Omega3 for a long time in different forms and I didn't notice anything. It's good that you were able to notice it was helping you, even if it took you going off it to notice! It's always so hard to tell what's helping and what's not.

  6. Did cheney check you for MTHFR defects ?

    I have been ill for at least 20 years and have tried various things over the years. But it seems the latest protocol is the methylation protocol. I recently tested for a partial defect and I am taking the methylation supplements. I am making some interesting progress. Some rollercoasting, while trying to get the dose right. Have you tried the this protocol ?