Thursday, June 21, 2012

F & Q about my disease

I made the best cookies yesterday!  Well the best ones I have had that are healthy!  They are made with egg whites, splenda, and part whole wheat flour.  Look below for the recipe.

But first I wanted to do a little Q&A about the blood disease I have.  Many people have asked questions and recently I have found out that many people are too shy or worried what I will think to ask questions about my health, so I thought why not explain it a little better.

So here are some frequently asked questions I get about my disease and how I am feeling.

Q: What disease do you have?
A: I have a type of blood disease, a type of protozoa, it lives in my blood and builds up on the sides of my blood vessels restricting blood flow and making my blood very thick.

This is a picture of my blood.  The dark blue is the normal blood.  The white film is the disease.  The white dots throughout are my white blood cells incased in the disease.  
Q:What symptoms do you have?
A:  This is a very painful disease.  Your joints hurt, your body aches all the time and your extremities swell a lot.  Some days your blood is so thick you can literally feel it slowly flowing in your veins.  Since I have been feeling better and my blood is flowing more I can think so much better!  I didn't realize how much it had affected my thinking until the last few months of clear thinking!

Q:  Will it ever go away?
A:  No.  But the good news is that it is manageable!  After 8 months of rigorous treatments where I only got out of bed for maybe an hour a day, couldn't drive, some days couldn't even bath myself or brush my own hair, I finally have a handle on it!  I will be on meds for the rest of my life and fingers crossed that it never flares up badly again.

Q:  How long have you had it?
A:  Over 8 years, but we just finally figured what was really wrong last summer.

Q:  Where did you get it?
A:  I got it my freshman year of college when I was attending Yale University and was on the rowing team.  I somehow got it from the water from the river we rowed every day.  It is a malaria type disease (water born as well) and I literally take Malaria medication for it.  I have to get my liver and retinas tested often because of how toxic the drug is.  But the good news is I can be on this drug the rest of my life.

Q:  What can you do for it?  How do you feel now?
A:  I take meds once a day and am feeling great!  I have a new appreciation for things like brushing my own hair, being able to drive to the grocery store all by myself and having the energy to go out on Saturday nights!  It has made me truly appreciate the things I have and I hope to always remember how miserable I felt for not only the 8 months of treatment but the 8 years of not knowing what it was!  I am feeling great and all my experiences have informed my ideas here on The Forward Home.

If you have more questions feel free to ask!  I am happy to talk about it!

Now on to the goodies!

Splenda Cookies with Whole Wheat Flour
80 calories a piece


    2/3 cup Light Margerine (I used I can't believe it's not butter)
    2/3 cup brown sugar firmly packed
    2/3 cup Splenda Granular Sweetner
    2 teaspons vanilla (I put at least double in to add sweetness)
    2 eggs or 1/2 cup egg beaters (I used egg whites from a carton) 
    1 tsp baking soda
    1/4 tsp salt
    1 cup semi-sweet chocolate chips
    1 cup all purpose flour
    1/2 cup whole wheat flour


Cream margerine, sugar, Splenda and vanilla until creamy. Add eggs and mix well. Add flower baking soda and salt. Mix well until blended. Stir in chocolate chips
Place level tablespoon of cookie dough on ungreased baking sheet. Bake at 359 for 10-12 min until golden brown. Cool on wire cooling rack.


  1. wow stephanie, i had no idea you contracted a disease like this- so sorry you have to deal with it, but i'm glad it's become more manageable for you. and you are such a fun healthy person. i enjoyed your pinterest myth busters! :)

  2. Love your blog Stephanie and so happy that your feeling better! It is through sharing that we build and lift eachother in our adversities so thanks, for sharing!

    1. Mandy glad you like the blog :) I hope you are feeling ok lately! I love all your fb posts! It is fun to be able to keep in touch since we moved