what is someone famous got blasto

Think about it. If someone famous picked up this awful parasite and tested negative for other bad bugs and believed this is what was making them sick. I mean after all they weren't sick before. And they weren't crazy before. Would research pick up? What if that famous person backed (financially that is) a study.

Why can't they just take the bug and grow it in a dish and hit it with combinations of existing drugs?

I happen to know a little bit about R&D and I know it is not that simple. But really why can't we just start trying the simpler approach.

I volunteer.

Stupid Christmas Cookie

Well Hello,
Here I sit at 11:37 on Christmas Eve and I made a mistake not that long ago. I ate a cookie. Many years ago we did a cookie exchange at work and I just fell in love with these lemon press cookies or probably also know as a spritz I think. No one else in the house really eats them, but I thought my little one might try them and my husband does eat a few...so I baked today. We had another choice to leave on Santa's plate and I got to have one of my favorites.

I am not sure why I thought I could handle it. So now I am typing away in my usual rhythmic pattern of working it through. I get agitated and typing helps me focus and calm down. And soon enough I will curl up some where in the house and finally fall asleep.

I have so little to say and so much to just type. Ever since I relapsed with the c.diff the blasto has been worse. I have been alternating herbs to try and knock it down a bit. I have a new doctor I am seeing who truly believes I need to clear this infection, well both infections. But the current treatment, as any of you know who have this and are reading, is not all that successful.

And then there are my kidney stone stories. In short, I eat basically all protein and because of that I have a high uric acid diet, and because of that I form uric acid kidney stones.

It stinks. Had a rough 4 weeks here. I wish it was warmer out so I could pace between mailboxes. I can feel the fatigue setting in, but so are some of the other symptoms. What a mess. WHY did I do this to myself!!!

Will power - what an interesting topic. I have will power that keeps me eating only chicken every day 4 times a day. I have will power to get up and go to work just about every working day of the year in spite of how I feel. Why did I eat that blasted cookie. Yes just one. And they are press cookies so they are not big at all. I remember before I knew I had blasto, and my older child was much younger, I got him a snack after school of milk and cookies (chips-a-hoy to be exact). I took a bite of one of the cookies and then through the rest away. Oh my - what a huge attack I had from that one bite. Really this is insane.

the dishwasher

I started a post a day or so ago called today is about c.diff. This spore forming bacteria is just horrible. Really it is by far so much worse. And I relapsed. Partially my fault. I of course am not to blame for having the disease. I have been off the vanco for a few months now, although I find I have symptoms often. I found a great help by taking culturelle. So I started to get a sinus infection and went to use an old Rx I had for a vaporizer delivery system. I have taken this before, but now realize I was controlled on vanco before. Well a few days after the first dose I am in full blown c.diff state. I have positives tests back and everything. And I finally decide to look the drug up on line and it is second in line linked with causing c.diff.

So why the dishwasher? c.diff makes you agitated among all the other symptoms. In a different way than blasto does. And the dishwasher is my white noise. It has soothed me now for years. I have been know to rerun it just for the white noise. I can not relax. I am so on edge it is not even funny And the dishwasher is not having its usual calming effect. But it is only 12 am. Well actually I guess it is technically 11pm since tonight is daylight savings - fall back 1 hour.

In our first house, which was much smaller, I could hear the dishwasher in our bedroom. Although I spent many hours trying to calm down or sleep in the sofa or day bed in the first floor bedroom/playroom. Years ago when we moved into our next house I was lost without the noise. In fact the old house had forced air, which was also great background noise. This house has baseboard hot water heating. Just not the same. It took some time to get used to not having the fan noise with the heat. And even longer for the dishwasher. I spend alot of time on the family room sofa now so I can be lulled asleep to the sounds it makes.

but tonight it is not helping so much. Stupid c.diff. I really mean it when I say it is a horrible disease. Just horrible

Lula said it best

Let me just start out by saying I am one the extreme blasto sufferers when it comes to food intolerance's. I basically can eat only protein and a few lone veggies and tomatoes for what ever the reason. I kid not when I say I have chicken for breakfast, lunch and dinner. And have for over a decade now. I have a very acidic body and have a history of uric acid kidney stones and gravel and crystals.

I was an avid reader before kids. I liked a good romance novel, but was also into light mystery like Dean and Patricia write. Post kids not the same kind of time, but for what ever reason I picked up a Janet Evanovich Stephanie Plum Novel. This was maybe 2006 or 2007. And I was hooked. Loved the lighthearted writing. Got the next one for Valentines Day or my B-day for several years. Have mental images to this day of Morelli and Ranger. Oh Yeah.

Well when we went to Florida this summer, and if  you are as sick as I am and cannot eat anything but a few foods you have to prepare yourself, you might wonder how I pulled this one off. Alot of work. Maybe that will be another post when the mood strikes. Anyway not a fan of flying, but can do it. Neither me nor my husband had been on a plane post 9/11 so were nervous and anxious for the entire procedure. And of course the kids had not flown. So I want to bring a book and since, as usual, planning and prepping for us was down to the wire I grab the first book in the Stephanie Plum series from our book shelf in the home office.

And never opened it. But after we get back and I am trying to find some nothing time over the summer I opened it and read book one. I am now caught up to re-reading book 17, "Smokin' Seventeen". Although I might not start it till tomorrow. I have to say it has just been so enjoyable reading them all over again. Like spending time with old friends. And reading them all one right after the other, they get funnier. In fact a few books ago I was in the waiting room at the hospital for my kidney stone ultra sound - yet another side affect of not being able to eat anything - and was laughing so hard I was crying and had people either staring at me or smiling and laughing too. A great laugh can be contagious.

Back to Lula. In "To The Nines" Lula, who could afford to loose a few pounds in on a meat only diet. The only page I have ear marked in all 18 books (last one I bought on my nook which just died last week) is in book 9.

And what I really want to say here is Lula said it BEST and I quote "I want to bite down on something. I want to feel it crunch in my mouth" "Jeez, You mean like a bone?" "Like an apple. Or a Cheez Doodle. Nothing Crunches on this diet. Meat doesn't crunch. I'm crunch deprived"

Evanovich, Janet, (2003)To The Nines. New York, St. Martin's Press

Perfect.

what do you wear during an attack?

I know is sounds strange, but I have clothes that I am comfortable in most when I am so sick. While I am usually a bare foot kinda gal, I want socks on my feet. Just something about warmth at the bottom of my body and maybe them being wrapped is piece of mind. I also might pace when I feel sick. Actually I pace alot. Before we knew what any of this was I would pace our street up and down. I would have these huge anxiety attacks. I still have them although not as severe.

Next I need elastic waste bottoms. Something loose and not binding and easy up and down for the obvious reasons. I have a few pairs of like lounge pants that are cotton and loose and do the trick.

I want a regular bra and not an underwire bra. I end up feeling like my ribs are being squeezed. Not on a normal day, just when I am feeling so bad. And usually a short sleeve shirt with a zipper sweatshirt that I can take off and on.

No jewelry. I have even been known to take my wedding rings off.

A favorite blanket. We have a polar tec from land's end that I bought several years ago for my husband for Christmas. Normally it is just a touch to hot, but it makes me feel swaddled. Thinking newborns know what they are crying about with this one.

what about retirement?

I found this as a draft - just the title of the post. I must have been depressed when I typed it. I have doubts several times a week that my husband and I will really have a retirement. Not because of the amount of money we have to spend a week to feed me - primary chicken diet. Although that will be a factor. But I cannot travel any where because I cannot eat anything because I have a stupid parasite that makes you intolerant to all forms of carbohydrates. How about a trip to - where ever honey? Really does not matter unless we find a way for me to eat out.

or hey I have a novel idea...what about a cure?

blasto and baking soda

The complications of this invader are endless. Maybe complications is not the right word, but neither is side effect. For example, my teeth have prematurely yellowed. Why? Well my own theory, and this is not even something I discussed with any of my doctors for my dentist, is lack of fiber in my diet. I do not drink tea or coffee. I have never smoked. Not even once. But when my diet changed from one with fruits and veggies to one with almost none at all, my teeth started to yellow. And my plaque buildup is also horrible.

But really that was not the point of my venting tonight. I have a highly acidic body. Due to an almost all protein diet. I decided to try some baking soda in water tonight to see if I could get my unrine ph to change. This was not a permit change with one 8oz glass, but a temporary change for a short period of time. If it worked then I would consider a more routine approach. Well I had a stupid trigger. And I was not expecting this at all. I had done this once before and had tolerated it ok.

And I have that anxiety feeling too. I hate hate hate that. If you suffer you might know it all too well. That feeling of doom. You feel like things are not in control. Like you are suddenly wound too tight.

When we lived in our first house and I had all the parasites at once I would have this almost all the time. Nights were particularly bad and I would pace. Not in the house since it was too small, but up and down the street for hours, or so it seemed. And I counted. Almost like an obsessive compulsive behavior. I was trying to feel in control first and second I was trying to do something methodical to calm myself down. It actually worked relatively well.  It is too late for me to go out into our street now. The house is asleep.

One reason I started this blog was so I could have something methodical to do. Typing is very rhythmic and has a similar effect. Plus it tends to be work to keep all the thoughts focused and tires me out so I relax and fall asleep.

Stupid baking soda, and thank goodness for coping mechanism.....whatever we find to use.

Wed 5:08 am

I know when I not feeling well and my disease is acting up, if that is what I am going to call it today, because I wake up early. I am almost jolted out of bed, well off the sofa. I know I was doing so much better last week because I not only slept through the night but slept in our bed instead of the sofa.

Yes I am a sofa sleeper. It started after the birth of our second and I did not want to wake everyone up in the middle of the night. Well before that there was the fear of climbing the stairs recovering from a c-section. Then the mid night feedings. Then the becoming sick all over again with c.diff.

This morning however feels more like a blasto thing. My hot spot on my lower right side is really a big knot. I was jolted awake by this weird dream. Don't even think I remember it all that clearly. And then the stupid shakes are kinda here.

I wish I had never ever touched that stupid entemenns raspberry danish on Sunday. I ruined everything. I was tolerating culturelle and align and as most of you suffering with blasto know probiotics set you off. But the dificid did something and changed my gut ecology enough that I was tolerating them and think I was starting to overcome the c.diff. Now I am scared to take one. I need the blasto back under control.

What a drag. I wonder if there is a high suicide rate with long time sufferers. Really makes quality living so very very hard.

And I was up late the night before too because I felt bad and could not fall asleep. and now up early today. I will lie back down and maybe turn the tv on and see if re-runs of cheers are still on.

don't eat entemann raspberry danish

Really it is not worth it. I did. why oh why. I am not even sure when the last time was I posted. Life has been busy. Using my alternative approaches to try and keep this beast under control. And trying to manage c.diff. Been busy with a new job, back to full time and I am not sure I am well enough, but oh well I'm in now. Anniversary party for my in-laws. Trip to Disney. Both of these are worth entries of there own.

I was on dificid for the c.diff, and while that is also another story, it did seem to weaken the blasto. Was not convinced it took care of the c.diff and I decided to try a probiotic yet again. I decided to mix it up hoping to mix the gut population. I alternated between natren's healthy trinity, align and culturelle. I knew right when the healthy trinity hit my hot spot. And Align would give a sort of announcment that it was now entering my colon. Culturelle gave only the slightest hint of arrival at my trigger spot.

I went into a c.diff or what seemed more like a c.diff event a week and half ago and decided to pound them until I could not handle it. And a very interesting thing happened. I was taking 8,9,10 a day and my d stopped. I still had back pain, joint pain, toxins circulating through my veins but the d stopped.

And I was feeling better. Ate a hamburger, and cucumber and tomotoes and cucumber again.

And too many chocolate chip cookies and keebler stipped cookie and then entenmanns was buy one get one free....so I bought the raspberry danish for me and donuts for my boys.

so for what ever reason on Sunday I ate half the danish. and I did not have my typical 4 hours trigger. But the next morning I went into a blasto episode. and the probiotics today set me off and the cookie set me off and now full blown blasto.

all from a danish. Really I would have no problem giving it up forever. If I never ate another one so be it, if I could have fruit and carrots and salad dressing etc

I am so sick and tired of this.
Really when is the medical community going to admit it make people sick and find the treatment!