December 28, 2011
The next step for Parvo online data gathering and dispensing…
Hello all. I’d like to wish you all a very Happy New Year – and a healthy one. One of our readers has been doing a lot of research and has pointed out a website to me, that might be of interest to all of you. Here is the link http://forums.phoenixrising.me/content.php?525-Ottawa-Conference-Reports-III-The-Most-Expensive-Disorder-Clauw-on-the-Fibromyalgia-and-CFS-ness-of-Chronic-Illness This is a well organized website that strives to give the latest information on CFS/ME and Fibromyalgia. First off, I am not convinced that we as people diagnosed with Parvo B 19 are to be considered separate from CFS. (here is an article of interest http://www.prohealth.com/library/showarticle.cfm?libid=9473) So many of our symptoms are the same. I tend to think that we are fortunate that we can pin point a direct cause or at least a correlation to our symptoms, however, that is not to say that CFS is not the result of other viruses. I tend to think the Parvo virus was a trigger, but that other factors were in line for us to get the “chronic” condition. Anyhow, there is some very interesting information on this site that might be of interest to you. This however is not my sole reason for having you look at the site. My question is, what can we as a Parvo Community do to facilitate more effective information gathering? Yes, we can figure out how to put together a fancier website, but I feel we need to have the involvement of some medical professionals. Do any of you have ideas and the means to help pull something together? I am not a web designer, nor have I found any doctors that are committed to our cause. If any of you have ideas or means to help put something together I am open to hearing them. I’d like this to be the most productive forum possible. I also wonder if perhaps we should try to connect with a forum like the one I have posted, as I do feel we are not so far removed from CFS as we might think…What are your thoughts?
Best,
Serena
October 21, 2011
power powders?
Hi all,
One of our bloggers has offered to share a supplement that has been working for her, prescribed by her infectious disease doc. She has had trouble posting so here it is … keep in mind I am not a doctor and am not endorsing this. Just passing on her information and hope it works for others as well.
July 9, 2011
End of the MFA
Well, I did it. I managed to graduate with my MFA in painting. It was the most difficult thing I’ve ever done and no way could I have done it without my family taking care of the home front, and eating lots of leafy greens! The last two weeks before the show I was painting in my studio round the clock and sleeping on my couch. A large part of the drive for my thesis work was this feeling that I needed to try to communicate to the world (or whoever sees my work) the true nature of our suffering. I wanted people to see that it affects so much more than just making us tired. All aspects of our lives change. I discovered a lot about myself in the process. An erotic element came out in my work that I had not pinpointed but then realized that yes, for so long when you are so sick, so tired, in so much pain, you stop feeling like a woman, you stop feeling desire, you stop feeling like you are a wife, a mother, you are just existing day-to-day. That is part of what I was trying to communicate. I hope that in a small way it will get our story out there.
So, now I am spending some time at home, resting, walking, being with family. I am also doing teacher training this summer as I have been offered a job teaching Figure Drawing and Color and Composition at my school, Laguna College of Art and Design. I just want to tell you all to not give up hope. Like Sami who found improvement with exercise, and myself finding a new lease on life after seven years by sticking with a vegan diet – along with moderate exercise, rest etc. there will be something out there for you. We are all different. Our bodies respond differently to different things. Don’t give up hope, but do be proactive. The doctors do not know your body like you do. Listen to it, avoid those things that make it worse, gravitate toward the good stuff!
Thanks for the ongoing discussion on this site. It really helps me to know that we are a community trying to help and support each other.
Happy Summer!
Feel free to comment on my website serenapotter.com
Title: Uninvited
April 19, 2011
April
Gosh it it time to get those lame tables off of the front page! It is April and I am in the home stretch on my Master of Fine Art. Let me tell you the pressure is on – so much money spent on the education, will I get teaching jobs, gallery interest etc. Working hard but at the same time am so grateful that my improved health has continued. When I went back to school my greatest fear was that I’d have to quit. I still have the fear that perhaps this will not last, but the longer I go the safer I feel. It has been two and a half years now since I went vegan and have had my improved health. Wow, it has gone quickly! I can’t believe how much I have accomplished in that time period. I feel like a different person. I am alive now. I have energy to care about my life and about other people. For so long I didn’t care about anything, just leave me alone and let me rest! That was my daily mantra. I have a new comfort food – mujedrah. My Jewish friend gave me the recipe – here is a link to an article with the same recipe. http://njjewishnews.com/njjn.com/082808/ltKeepingCultureAlive.html I use olive oil instead of butter and vegetable broth. The key is to get the onions nice and dark, crispy, nearly black. Yum. So, anyone found some things that have been helping them as of late? Spring is here – great time to increase consumption of those baby greens! Wishing you all the best!
Serena
January 2, 2011
2010 in review
The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:
The Blog-Health-o-Meter™ reads Wow.
Crunchy numbers
A Boeing 747-400 passenger jet can hold 416 passengers. This blog was viewed about 5,500 times in 2010. That’s about 13 full 747s.
In 2010, there were 9 new posts, growing the total archive of this blog to 30 posts. There were 3 pictures uploaded, taking up a total of 785kb.
The busiest day of the year was November 21st with 75 views. The most popular post that day was Purpose of this Blog.
Where did they come from?
The top referring sites in 2010 were mail.live.com, search.aol.com, mail.yahoo.com, litlove.wordpress.com, and potterparaphernalia.blogspot.com.
Some visitors came searching, mostly for b19 virus, chronic parvovirus, parvo b19 virus, chronic parvovirus b19, and chronic parvo.
Attractions in 2010
These are the posts and pages that got the most views in 2010.
Purpose of this Blog October 2008
116 comments
My Story February 2009
68 comments
Resource Page May 2009
I Remember Me March 2010
9 comments
Research Opportunity November 2009
11 comments
December 29, 2010
Happy Holidays
Hello all,
I hope you have had a good holiday season. I’m sorry to see so many of you commenting on struggles. Tis the season I think. I’ve battled a cold for over a month – think it is starting to clear up. Since going vegan I’ve managed to avoid colds and such, but the stress this past semester probably brought it on. I managed to get through Christmas and not venture from my diet – though did over do it on the olives and pistachios! Our family got caught up in weather travel mess trying to get from California to Utah and then on to Minnesota, but all ended up well. I hope we can all enjoy a pain free year with answers to all! All the best,
Serena
November 20, 2010
November
November is upon us and I find I face another season of not wanting to have anything to do with the holidays. I just can’t imagine gathering enough energy to decorate, shop, be joyful, pack, travel. I am still immersed in painting and doing all the things needed for my MFA experience, but there is nothing left for anything more. The vegan diet is still the thing that keeps me going, but on days like today – a Saturday- I know I will spend the day on my bed, with sketch book, laptop, watching movies, napping and hoping the pain and swollen feeling in my hands will go away.
I’ve appreciated all of your comments over the recent months. It is really very helpful to know that one is not alone in this struggle. I do hope that there will eventually be an answer. For now, I am trying to paint my experience and do know that as people see my paintings they gain some element of understanding as to what we go through. It is very interesting to hear the stories that other people bring to the paintings. I will often not tell them what they are about, but let the viewer tell me what they think it is about and even though they do not say Parvo, they do feel what I am trying to communicate.
I hope you will all have a pain free weekend!
Serena
July 22, 2010
Painting Parvo B19
This past year I have struggled to figure out how to paint my struggle with Parvo. Each painting that I do is about just one aspect really, or how I feel on a particular day. This is the first in my series. It has been accepted into a show at the TAG Gallery in Santa Monica, Ca. which opens next month.
" Down Again" Oil on birch panel. 24 x 36"
June 30, 2010
Coming Along
I find it interesting that information on Parvo has improved substantially in the past eight years. I just did a quick search and came up with this article http://autoimmunedisease.suite101.com/article.cfm/human_parvovirus_b19_infection
The severity of the Parvo B19 virus has become far wider known and every six months or so when I do more searches I come up with further research and indications of possible complications. It at least gives me hope that patients will be taken seriously rather than being told “Oh, Parvo, no big deal”. It is a big deal and I think they are starting to figure that out. The more they know about what it can do the more money (one hopes) will be put into the system for research on possible treatments and preventions.
As I continue to eat a high nutrient vegan diet – staying away from packaged foods and additives – I find that I continue to cope well. I have been walking this summer and am actually getting stronger. I can make it around the lake – 3 miles – in 35 minutes. Six months ago I could get a third of the way around, would double over with pain in my hips and knees – feel dizzy and otherwise terrible. I am amazed that I seem to be actually making progress rather than just coping. I know that stress brings me down. It is so difficult to avoid stress, but I sure try. Summer is a wonderful time for being vegan – so much fresh fruit and really good veggies. Here is a recipe I have enjoyed. I also add red grapes. http://www.epicurious.com/recipes/food/views/Curried-Quinoa-Salad-with-Mango-232544
Do you find the warm weather helps with your symptoms?
Serena
