February 25, 2009

Feeling Good

Posted in Uncategorized tagged , , at 1:40 am by serenamuse

After taking a couple of days to adjust to a broken foot, I find my energy levels are high and I am doing well. I continue to eat my 80% raw fruit and veg diet – with whole grains, almond milk, nuts and seeds. It is great. I am a food believer. I am painting like crazy and feel like my work is taking a turn for the better. I am feeling alive, like part of the world again. If you are interested in my painting blog please go to http://serenasdailypainting.blogspot.com/

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February 19, 2009

Down Day

Posted in Uncategorized tagged , at 5:09 pm by serenamuse

So, I’m feeling pretty down today. I have been doing so well with my new diet, then I have to go and break my foot. I managed to get to the library and my daughter’s viola lesson yesterday- nothing major, but had to navigate snow, ice and stairs on crutches. Today I am so exhausted I just want to cry. I went to bed early last night, because I knew I had reached that point. You can feel it, where you are so tired you can’t read, you can’t think, you can’t do anything but be a vegetable. My family knows when I have reached that point because I fly off the handle at the smallest things. I awoke not much better. I know that traumatic experiences can recharge your Parvo – moving, illness, death etc. I’m sure a broken foot falls into the category! I hope you and your kin are having a better day today!

February 16, 2009

New Problem

Posted in Uncategorized tagged at 7:17 pm by serenamuse

Nothing to do with Parvo – well I don’t think so – but I broke my foot this weekend. It is a Jones fracture – on the side of my foot. Probably started it last week when I was doing yoga on the wii, lost my balance and landed on it wrong. I was helping my husband shovel snow on Friday night (see I told you the diet was helping) and decided to make a snow angel for my daughter who has been indoors with a fever the past few days. Well, upon trying to stand I put the weight on the foot and snap – excruciating pain!

I can’t tell you how frustrated I am. To have just found renewed health, to be able to exercise again, and feel a little normal and now this! I’ll but laid up for weeks. Why do these things happen? I admit I am feeling a bit sorry for myself today.

February 14, 2009

Working the blog and Parvo tests

Posted in Uncategorized at 12:03 am by serenamuse

I find Word Press to be very frustrating. I don’t know why my posts are not in order of date, I’ve gone to settings and tried everything. To make it easier, please post comments on the most recent of my posts. Then we will all be reading the most recent comments and not have to search for them.

One of todays comments was about tests coming back negative. The only test that came back positive for me was the initial test that found the parvo antibodies. Since then, it does not matter what I am experiencing the test will come back negative. One doctor said that people who are in constant pain are more in tune to their bodies so they feel things before they are strong enough to show up on tests. Could be, but still very frustrating.

I saw a doctor two years ago who had been at a conference and said at that conference they discussed three natural substances that had been found very good at treating the symptoms of parvo, but she was not allowed to tell me what they were because they were not approved by the FDA for that purpose. She told me to do my own homework. I searched and searched. I read about taking Omega 3’s , I read about the super dark chocolate diet – worked for patients in the UK – 85% cocoa chocolate every day. I found it helped some, but not enough. Nothing has worked enough except for the raw vegan diet. Not a cure, but helps. Now today we are snowed in and my hands are having a tough time, with with the cold. Season changes affect me too.

If you have suggestions for what tests should be asked for, please let us know. Keep in mind, having a test that will tell them what you have, does not mean they can help you in any way. They do not have a cure for this. You just have to find what helps you the most. It is constant experimentation.

February 12, 2009

Wow! You found me!

Posted in Uncategorized at 3:28 am by serenamuse

I have to say that I am amazed! I really didn’t think anyone would  find this blog, then today at random I find that I have 35 comments! I too am still trying to sort out the blogging thing. Every blog host is different.

Okay, let me say I am so appreciative of all of your comments and your stories. It confirms that there is indeed a need for more research on Parvo B 19.

Here is my update. I did see the specialist at Loma Linda. It was not what I had hoped for. She basically said, that she was sure the Parvo was no longer the problem and that I should just call what I have Chronic Fatigue Syndrome. I don’t care what they say, I know what has caused all of this and I don’t feel that you can disregard the cause while looking for the cure. She told me it didn’t matter what the blood tests said that either way they have nothing to offer me. There is no cure for Chronic Parvo and there is no set treatment for CFS.

The tests came back I phoned the doctor for an explanation, he never returned my calls. At this point I was so brain dead, so fatigued, could not even think straight and I was approaching my 40th birthday. I was thinking things like “my ten year old has known me sick longer than well”. My life is half over and what am I accomplishing! I sleep more than I am awake. I can’t even read, the words swim on the page.

Well, while visiting family for Thanksgiving – also celebrating my birthday- my nephew tells me about a woman that he has designed a clinic for and tells me that she helped him with some health issues. At this point I am willing to try anything, so I make an appointment to see her. She was a nutrition, colon cleansing “witch doctor” from South Africa. No, she was not really a witch doctor, but as far as I was concerned she might as well have been.  She looked in my eyes with a magnifying glass, she looked at my toungue and finger nails. She then proceded to tell me what I was experiencing. It was uncanny how she could pinpoint spots where I was in pain, by looking in my eyes! Anyhow, bottom line. She told me my body was terribly inflamed, that I needed to detox and start feeding my body the nutrients that it needs to heal itself. I figured the doctors had not offered any help, so why not try what she had to offer.

She put me on an 80% raw vegan diet. No Coke Zero, no splenda, no dairy or meat. I was to start the day with a musilx soaked over night in hemp milk (hemp being the highest in nutrients of all the milks). I  was to eat two large salads a day – all dark leafy greens – spinach, kale, chard, parsley, cilantro etc. No iceburg! I was to add small amounts of nuts, seeds, whole grains, legumes, beans and some omega oils. Lots of filtered water, herbal teas and as much fruit as I want. Organic as much as possible.

She also put me on some suppliments one of which I figured out was full of caffiene – which did not seem to go with the whole detox thing, however, I discontinued the pills with the caffiene and continued on the diet. It has now been over two months. I feel better than I have in seven years. I sleep through the night. I am awake during the day. I can read again, paint again, sit at the computer again, do mild exercise and am off all pain meds. I still have off days. I have also been going to a chiropractor – coverd by my insurance so why not? People tell me I look different, sound different. On a postitive side I have lost 15 pounds. It has almost been too good to be true. I fear that one day I will wake up and all the pain will be back. I have been doing my own reading on vegan diets, raw diets etc. I am trying to keep it simple, not into juicing or dehydrating – just eating good food. I now crave vegetables. I never thought I could give up dairy. I have now added almond milk and rice milk. I make a large batch of chopped greens in the morning and heap them on my beans, grains, soup whatever for lunch and dinner. I am finding that if I am out I can do the veggie on flat bread at Subway – no cheese. I do veggie burritos. Most chinese offer vegan options. It is not nearly as limiting as I thought. I make smoothies with fresh fruit and frozen fruit with one of the milks. If I need sweetener I use a packet of Stevia. I do still allow myself the occasional organic dark chocolate.

I wonder why for seven years my doctors have never told me what it means to eat healthy? Now, I did have some withdrawl symptoms during the first five days, some head aches, body aches. I could feel that they were detox symptoms.

A good author I have found on the subject of eating for health is Dr. Joel Fuhrman. He has a website http://www.drfuhrman.com

Other good books are Living Foods for Optimum Health, and the 80 10 10 diet.  They all talk about making sure each calorie you eat has the highest amount of nutrition possible. Most of what I have read makes sense to me – some things have not and I have ignored them. For instance it does not make sense to me to drink all of your vegetables – you miss the fiber that way.

I have to tell you I would not have been ready to try this a year ago. I have been bound and determined to make the medical feild find a cure for me. They have not. They have no answers but drugs and possibly IVIG but that too is very scary.

Ask yourself what do you have to lose by trying a different diet? At best it will make you more healthy.

Have any of you had success with diet changes?