As Above, So Below.

That Really Chaps My Hide.

2013-04-23T13:22:00.001-05:00

This is a vent.

I hate it when vegans or vegetarians tell you that being a vegetarian is the only way to be or eat. Or, that if you think at all, or care at all, you would be like them. That thinking people wouldn't be able to kill animals for food and how cruel they are to eat animals. I even read some quote somewhere that said "I think, therefore I am vegan". Does that mean then, that since I am not vegan that I don't think? I am thoughtless and cruel? The people who think their way is the only way really chaps my hide. They are not thinking about other people and maybe they have different needs.

The particular thing about the veganism bothers me the most right now. First, because I used to be a vegetarian. When I was 16 I had a teacher who really meant a lot to me. She was smart and funny, and most of all, nice. She showed me pamphlets from PETA and ate lunch with me. I was a vegetarian for 4 years. I believed that eating animals was cruel and wrong. I didn't want to support the animal killing business in any way so I didn't eat animal products. Eventually, I got tired of feeling weak and sick and slowly added meat back into my diet. I didn't realize it then, but the vegan diet was killing me, starving me of nutrition. I didn't eat a lot of meat. What I did eat was mostly chicken or burger with lots of veggies.

About 2 years ago, I realized why eating vegan hadn't worked for me, and why eating small amounts of meat wasn't working for me either. I had been testing borderline anemic for years. I was low on lots of vitamins, my bad cholesterol and triglycerides way high, and I had lots of chronic pain and inflammation. My children and I all tested positive for Fructose Intolerance, or Fructose Malabsoprtion Syndrome. Fructose and fructans are found in every food except plain meat. I was not absorbing vitamins or nutrients out of most of the food I was eating. I was not absorbing all the stuff I needed to make energy or the happiness chemical that wards off depression. I was not absorbing enough vitamin B6, Iron, or anything else really. I was told that my safe food was meat, spinach, mushrooms, and certain citrus fruits. If I add anything else or eat anything else then it is just for fun because it won't really give me any nutrition. A vegan diet would slowly starve me to death. My children would slowly starve to death. My now 6 year old spent a year looking like a starving Ethiopian child from those send money commercials even though she ate a ton of food all the time. She ate tons of fruit and veggies and hardly any meat. Once we quit feeding her fruits and veggies and made her meals mostly meat she bounced back, regained her muscle and had better behavior.

Since I have changed my diet to be more meat heavy, I have had more energy, more happiness, less fatigue, less pain, less stiffness, and less brain fog. I still have issues from the Ehlers-Danlos, but it is much easier to manage.

Most of this hide chapping comes from my facebook feed. I could probably just turn them off but I actually have other stuff I need to communicate with them about. Unfortunately, I have several friends that feel this way even though they know my family, my children, suffer from this intolerance. It hurts my feelings and angers me. Obviously, because I am writing this post. But, what bothers me most? Why do I let this upset me? Because it is inferring that they are better than me? That I am somehow wrong for choosing to eat meat? That eating meat is selfish? Maybe it is because I am not feeling accepted for my choices. Or respected. I didn't make that choice lightly. I still feel guilty eating meat if I stop to think about it, especially since I can't afford humanely slaughtered animals. I still refuse to eat veal. They are treated so horribly. I won't eat lamb either. They are usually slaughtered when they are still yearlings. We stick to the main ones. Chicken, beef, and pork. I try to imagine that they lived a stress free life and died painlessly. I know it is not true, but I can't do anything about it. I can't afford better stuff and I can't afford to not eat meat.

We eat meat because we have to. We actually do have to eat it. We don't have the choice of being vegan or vegetarian.

Fibro Flare, EDS fatigue, or Post Partum Depression?

2013-03-01T07:51:00.002-06:00

I really hurt right now. I hate to admit it. I don't like to let anyone know when I am hurting. I will use blanket statements like "I am just tired today" or "I will feel better tomorrow". And most times that is true. But then I get spells like the one I am in know, where it has been more than a week, and I start to feel like a liar. The I start telling myself that I am lying to myself about getting better, I will never get better, I am cursed, etc. And then I get depressed. And then I will have more pain, and the cycle cycles on. An ever down spiral dragging into the pit of my own hell. It is so hard to break out of it.

But I had been. For a couple of years now. I felt like I was in charge of my life, like I was doing what I needed to do. I didn't have loads of energy but I was getting stuff done around the house, keeping up with it, managing the schedule. I love the feeling of not getting behind. I was doing awesome. It was so good that I felt like I was lying about being disabled.

And then..... 2 or 3 weeks ago I started falling behind. I just didn't have the energy to do that last task of the day. I thought it was because the baby was teething. He wasn't sleeping at night and it was draining on me. Then parts starting hurting much worse than they had before. And I thought maybe it was because of the hormones. They change around 6 mo postpartum, when you are breastfeeding. He was 7 months, maybe the hormones caught up to me. That would explain the hip pain and the sliding out feeling. A couple of days ago I realized that I was sad all the time too. Was this caused by the pain, the hormones, or the not doing anything?

I hate this, feeling like this. It is moments like these that make me remember just how disabled I am. I sit here thinking, hoping, that maybe one day I could be normal. Make the pain go away. I know that won't happen though. There is no cure. And so I have spiraled even further down into that thinking that takes you nowhere,

It is time for a change!
I have to jolt myself out of this thinking, this circular thinking. I need to go back to the gym. If only so that I can spend an hour by myself in the pool or at a yoga class. Sitting still and doing nothing will only make things worse. And I refuse to get that bad again.

Lost Baby.

2013-02-15T15:43:00.000-06:00

Most people don't like to talk about losing a baby. It is raw and fierce. And most people don't understand. Then there are all types of lost babies (like categorizing them means anything to a mom who has lost a baby). There are babies who are born and die before a year. Ones who are stillborn. Late term losses. Early losses. Miscarriages. Mine was an ectopic pregnancy. 8 weeks.

It was a total surprise that I had gotten pregnant. I was not trying. My relationship was not serious. But I knew right away that I wanted the baby. I was 4 weeks when I found out. The day I missed my period. The week the heart is forming. By 5 weeks the heart has started beating. There was new life. My baby. By the 6th week I knew something was wrong. One side of my abdomen was bigger. It was puffed out. It was supposed to be in the middle but it was to one side. I went to the doctor and they drew blood. The hormone count was right but they sent me in for a vaginal ultrasound. They were a little worried too. The ultrasound showed nothing. I mean, nothing. There was nothing in my uterus and they couldn't see anything in my tubes. They said that it was hard to see it that soon and that if it was in my tubes that it would be too small to see, etc. Looking back this makes me mad. They sent me back for 3 more of those intrusive painful intra vaginal ultrasounds. Each one, they said the same thing. They didn't offer any kind of treatment, just to wait and see.

I was 8 weeks along. Trying to sleep. 3 am. I am woken up out of my half sleep by incredible pain. My whole belly was on fire. I tried waking up my then boyfriend. I told him something was wrong. That I hurt. He told me I was imagining it and to go back to sleep. I was crying but he rolled over and went back to sleep. I stumbled downstairs to the bathroom. Crying. I made it to the bathroom before I started violently vomiting. I was half passing out from the pain and half violently retching. I was crying and moaning. It was blindingly painful. My room mate heard me and came to see what was wrong. I told her that I needed her to watch my 3 yr old and I was going to go to the hospital.

I picked myself up. Put on my shoes. Grabbed my keys and got into my little 5 speed 2 door. And then I drove myself 30 miles to the nearest hospital. To the astonishment of the hospital staff. They admitted me instantly. They did a quick look but I don't remember if it was an ultrasound or what. The one thing I remember is that they said they had to do emergency surgery, my ectopic pregnancy had burst, and then I told them to call my mom. The next thing I remember is waking up in a recovery room. All the meds they gave me, I still remembered what had happened and that there was no more baby. All my housemates and family came to see me, even my then boyfriend. But everything was hollow. I tried making jokes about the meds making me trip, but all I could think about was how hollow and empty I felt. The nurse came in and asked me some questions. She was flabbergasted that I had drove myself, 30 miles, shifting a manual. She said 5 more minutes and I would have been dead. DEAD.

I quit thinking about the baby after that. Or so I told myself. I stayed in bed recovering for a couple of weeks and then went on with my life. I waited 7 more years to try again. I found a nice man and settled down. I started thinking about how I wanted another baby. My son was 10 and I might not have another chance to have one more. I only had one fallopian tube left and I wasn't sure how hard it would be to get pregnant. When I finally did get pregnant I was scared that it might be ectopic again. I wasn't afraid because I might die. I was afraid because I might lose another baby. Then it hit me how much it had affected me. How much it still hurt. How mad I was that I couldn't have that baby. I went on to have 2 more after that. 4 children in total.

And every single one of them reminds me of the one I should have had. At 8 weeks, he or she, would have had a heartbeat. A brain forming, circulatory system started. Every successful pregnancy, I would read along to those "where are you now" pregnancy things. Imagining. Missing. Begging the Universe to give that baby back to me. Knowing that isn't how it works. Birthing, nursing, watching baby grow. I would sit and think about my missing baby. Trying to imagine what he would look like, act like, sound like, smell like. Sometimes I would cry.

I recently decided to get my remaining tube tied. Actually, I decided to get it cut off and thrown away like the other side. It feels right. The 2 sides match now. It makes it feel a little more normal even though I am the only one who knows and nobody can see it. I had 4 lovely kids plus a bonus step daughter that I get to be a full time mom too. I have enough kids. I cant keep having babies trying to fill that hole left behind. I am disabled. I just cant take care of anymore. It was the right decision. Today was my last post op check. Checked out fine. I told the doctor that I should have asked to keep it, to see it. She said they take pictures for documentation but that it was left in my hospital file. I always regretted not being able to keep my baby, to bury. The hospital doesn't think of it as a baby at 8 weeks. They "disposed" of it probably. I wasn't in any frame of mind to ask for it or even think about it.

It is only now that I regret not having been able to keep it and bury it. I realize that it wouldn't have looked like a baby and I might not have wanted to see it. But I do wonder sometimes if it would have felt better being able to bury it. On my way home from the appointment I wondered if they had taken a pic of the baby. Would it have been in my file? Then I get a clear vision in my mind of what it would look like. Or what I think it would have looked like. It is so clear though. I start crying. I am thankful my 2 kids with me are sleeping. I silently weep all the way home. Missing my baby again.

He would be 13. I say he because I have a strong feeling it would have been. I don't know for sure. They were never any tests done because it was clear what happened. There is a gap in my kids where he should be. There should be my 17.5 yr old and then a 13 year old. They should have grown up together. They should have had each other. It has been 14 years and I still cry about it like it was yesterday.

I hold my only other living son. My 7 mo old. And I wonder. Is reincarnation real? Could the baby have come back to me? Ever? In any of these children? Would I ever know? Why does it hurt so bad?

I don't talk about it much. When I have, I usually hear stuff along the lines of being glad it was so early, or it was too early to be a baby. I hate hearing how it is easier than losing a born baby or late term baby. It doesn't feel easier. It was the only baby I ever lost. I have nothing to compare it too. I have lost family members, grandparents, a best friend, but only one child. The only thing I can compare it to is the actual having of my live children. My loss is real.

Homemade cough syrup for my Husband

2012-11-03T16:13:00.002-05:00

My Husband likes it when I make this homemade cough syrup for him. He says it works better for him than store bought stuff. It might be the large amounts of brandy in it.

But here is how I made it.

To begin with you will need a glass container that will hold it all. The opening will need to be covered with a towel that is held on with a rubber band. It will need to steep for 2 weeks. After steeping you will need to bottle it. I have used canning jars before but found some pretty blue glass bottles this time instead.

You don't need a double boiler to do this but I like to use it. I think it helps heat up the brandy gently without heating off too much alcohol. My husband likes the alcohol.

This is the type of brandy we like to use. My husband likes the flavor and it isn't too cheap or expensive.

You will need 2 pints.

The next ingredient will be honey. It is better if it is local organic honey. This is what my husband picked up for me. I usually buy some from the local health food store. You want to take 1 cup of honey and stir it into the brandy over low heat. Stir until dissolved. The remove from the heat right away.

I will be putting most of my herbs in the cheesecloth. It makes it easier to strain later. You want to use a nice size piece.

One of the things I put in it is orange peel. Nice freshly grated peel. 1 tbsp.

Then add 2 whole cloves.

I usually use loose leaf tea, but all I had was tea bags. I like to use chamomile and nettle leaf. But the recipe I have been using calls for 2-3 eucalyptus leaves. My husband has a sensitive stomach so I use several bags of the other tea instead. The chamomile is to ease stomachs. the nettle leaf is supposed to reduce allergy symptoms as well as support the immune system. I have used echinacea before as well.

Before you tie up the cheesecloth you will also need to add 1 tsp cardamon, 1 tbsp crushed peppermint leaf, 1 tsp sage, and 2 tsps cinnamon.

Juice half a lemon and add it to the brandy and honey mix.

I take the opposite corners and tie them and double knot. Then the other sides.

Stick it all in the same jar. Put a towel over the top and rubber band it on. I did not take a pic of that, but I then set it in a cupboard for exactly 2 weeks.

After steeping for the 2 weeks i took it out and prepared to strain it. I put some cheesecloth into the funnel to do this.

It will get gummed up and fall down into the spout, so you will need to keep pulling it back up and using all angles to pour it. It does have honey in it and it makes it a little goopy to strain. Make sure you squeeze all honey back into the medicine.

The finished liquid is cloudy.

I had these for awhile and my husband asked if I could bottle it for him.

Both bottles are only filled half full. That way they wouldn't soak the corks too bad while being store tilted on their side.

My first try at Kombucha Tea

2012-10-10T14:51:00.002-05:00

I love my midwife! She gave me her homemade kombucha tea to drink during my pregnancy and it was awesome. The best I ever had. I knew I wanted to make my own. I asked her about it and she said it was surprisingly easy. All I had to do was get a scoby from her and start brewing. A scoby is a culture. It is bacteria and it looks like a mushroom. I am not entirely sure what it is but it is not the same as fermenting pickles or the probiotics in yogurt. It is supposed to be good for eliminating systemic candidas.

First you need a gallon glass jar. Clean with vinegar and rinse it real well.

then you are going to make sweet tea. I used 2 family size bags of green tea and 2 family size bags of regular lipton tea (I have since found that I like to add 2 more tea bags for flavor). I boiled up the water in my tea kettle and steeped the tea bags right in the kettle. I put a cup of sugar in the jar and poured the hot tea over it. I mixed it up real well then added cold water almost to the top.

Here is the scoby that she gave me. It is in a cup of starter liquid. she just poured a cup of her tea in there with the scoby.

Here is the tea I brewed. I added the cold water. I tested it to make sure it was cool before adding the scoby. You don't want to kill the culture.

Here it is. Tea, sugar, scoby, and starter.

Put a towel over the top and use a rubber band to secure it. We want the air to get in there, but we don't want bugs in it.

Up close view of the scoby floating on top. I marked the date in case I forgot when I put it in there. Then I put in in a bottom cupboard. It is dark there but not too cold. The warmer it is, the faster it ferments.

After a week I took it out and tried it. I took a straw and stuck it down beside the scoby to the tea underneath, then put my finger over the top to get a taste. It was still sweet with the beginnings of tartness going on. That is what I wanted. In the warmer weather I find it only takes 5 days and in cooler it takes 8. You just have to taste it and see when it gets to what you like.

I decided I wanted to do a second fermentation. I didn't have any juice. Juice is better. Whole fruit makes stringy things in the brew. I used some berries though. I mashed them up real well and added a little more sugar. About a tablespoon. If you don't want to do a second fermentation, then just pour all the tea (except a cup for the next batch) into a pitcher and add some juice for flavor if you want. Glass is best for this tea. I have read that it can leach the bad stuff out of metal and plastic. It shouldn't matter too much with the refrigerated stuff though.

I am putting them in little jars for ease of drinking. Make sure you save the scoby and a cup of the liquid off the bottom in a bowl. You will need this to make another batch.

I put my pureed fruit in the bottom. I tried to spread what little I had out evenly among the jars but whatever. A little variation in taste is nice.

See the bubbles! It already has some carbonation going on.

Yumm. Raspberries.

I filled them up to leave little room for air. For this part you don't want air. I put them in a warm cupboard for 2 more days to encourage the second ferment. Then I will take them out and put them in the fridge to get nice and cold for drinking. Then I took a cup of liquid from the original tea and the scoby and did it all over again. The next brew, I should be able to peel the baby scoby off the top and give thee mother away or store it and keep on brewing.

Here is my jar with the towel rubber banded on top. It has a permanent place down there.

Prefolds made out of old tshirts and flannel receiving blankets.

2012-09-05T19:39:00.000-05:00

When I found out I was expecting my 5th child, I was excited and scared. More work, less sleep, less date nights with the hubby. I had just gotten used to being able to have spare time again. I figured I should use some of that spare time getting ready for this last little baby.

I had cloth diapered my last 2 children and loved it. However, I had not used cloth for the newborn period. I always used sposies (what cloth diapering fanatics call disposables). I decided that I could make my own. I am handy with a sewing machine. They couldn't be that hard to make. And I did have 3 dozen old t shirts just laying around waiting for a project. I bought a bunch of flannel receiving blankets from a second hand store and started googling my little heart out looking for instructions. I found lots of stuff. Half of it was good and half bad. I figured I had nothing to lose.

Here is an old t shirt. I decided I wanted a diaper that was 11in by 13in. so i measured my t shirt to see how much of it I would need.

I cut off the top. I was going to use the top for something but I can't remember what now. I am sure there is lots of stuff you can use it for.

Most of the t shirts had seams going down both sides. I trimmed off all the sides until I had a nice rectangle that fit my measurements. I wanted an 11 by 13 in diaper so I cut them just a tiny bit bigger. I figured that it would give some room in case the ends around the seams rolled up.

Old flannel receiving blankets are not nice and square. They change and become lopsided. I folded in half so that it was long on the fold.

I wanted them 4 inches wide and the 11 in long. But I cut them just a tiny bit bigger like the dipes.

First I trimmed off the end to make it straight. then I went along and cut every 4 inches. The last piece I trimmed off the end to make it straight. So they were cut in pairs.

Here is my stack of cut up shirts and blankets. Enough to do 36 diapers.

I decided to use 2 layers of t shirt and 4 layers of blanket.

I pinned the 2 layers of t shirt together. A lot of blogs I read said to put the layers of blanket in between the t shirt layers. But I wanted to see the flannel fabric. I thought most of the prints were real cute and would look good with the different colors of t shirts.

I really don't like this print so I wanted to hide it under another.

So I put this cute dog one over it and the pinned it in place.

Here is another combo I thought was cute.

I probably should have taken some pics while I was sewing them up. I hope you can see the seams in these next pics.

Here is a pic of my newborn (1 week old) son wearing the prefolds I made. Most of these diapers worked just fine with snappis. Some of them I had to use pins with. It all depended on the actual t shirt fabric.

Now, if you are going to put the flannel on the outside, I have a few words. First, You have to sew real close to the edge. Whatever is left on the other side will fray the first couple of times you wash it. We don't want loose strings wrapping around body parts and constricting them. I sewed these twice. once right next to the edge and then once a little further in. I mostly straight stitched but i like the zig zag on some of them too. I did not try to be perfect. I just tried to make it as close to the same as I could. These were the perfect absorbency for my little guy. He needed it too. He is a heavy wetter to this day and these did the trick. I made them with just the right rise that they fit under his healing little belly button nicely and inside his Bummis newborn wrap that had the belly button dip.

PUL on reusable breast pads

2012-09-05T10:19:00.004-05:00

I had bought these cotton breast pads before the last pregnancy. My flow was so heavy last time that I leaked through them rather quickly. I was afraid that I would do the same thing this time. I figured that putting a pul backing on them would help fix that. So I went to Joann's fabric and bought some pul they were selling. I didn't measure anything. I did exactly what you see. I was pretty sure I had 4 pairs but I could only find 3. I did later find the last pair so I actually have one more set to do. It is important to note that when working with pul fabric, you are supposed to iron it first and then let it cool, not to sew anywhere except the very outside edges, and put in a dryer for 20 min on med heat after wards to reseal the fabric around the holes made by sewing it.

I put them on the fabric to see how much fabric i would need.

I cut squares around them.

I pinned them on the outside to hold them still while I cut off the extra.

I sewed a seam all around the outside edges. I washed and dried them a couple of times. They did not changes shape. I have used these many times and I love the fact that they do not leak straight out of the front anymore. when they are full in the middle they seep to the outside (like a diaper in a wrap). They would eventually leak if worn too long but they worked great for me.

I have some very exciting news to share.

2012-08-19T19:08:00.003-05:00

"My husband and I are expecting our 5th child. I am rather nervous about it, because it wasn't planned. I had wanted another baby anyway but I though I would have at least a couple of more months to maybe ask DH to plan one. I would have waited up to a year for another one. I was not ready. I prefer to plan every thing. But I guess, the Universe has different ideas that I do, because I am in my second month of pregnancy.

Already my round ligaments are yelling at me. They feel like rubber bands stretched too thin. I am bloated, so bloated. The hunger is crazy. I am eating every hour. And if I don't, the morning sickness gets me. So tired. And on top of that I have a really bad sinus cold. My ears hurt, my sinuses are full and my throat is killing me." Nov 2011

And this is old news. Why? Because I already had the baby about 6 weeks ago. The pregnancy kicked my behind all over the place. I had no energy for anything during the entire pregnancy. I wanted to blog, needed to even. Every night after dinner, I wanted to sit down and write. I had stuff to talk about. Important stuff about pregnancy and EDS. Stuff I wanted every one to know. But I was so tired that it never got done. I did find the time to write this next draft: on July 6th 2012.

"born today at 1:59 am. 21 3/4 inches and 9lbs 6 oz!

i walked for hours the 2nd, the 3rd and then the night of the 4th. i also ate half of a stuffed jalapeno at the bbq. all day the 5th i felt like i was having a bad stomach ache. i figured it was the jalapeno. i was having cramps all day and i pooped out everything i ever ate in my life.it was about 6 pm i called the midwife and told her how i was feeling. she thought i might be dehydrated but i reassured her i had been drinking gatorade and water like a mad woman bc it was so hot out. she said drink a glass of wine and try to sleep. well they kept coming faster and harder but they werent uniform together so i figured they would peter out and i could go to sleep like last time. about midnight i gave in and admitted they were strong and they were the real thing. the midwife got her at 12:30am. i had been vocalizing alot but none of the kids woke up. the 2yr old was up bc everytime i laid down with her it would hurt too bad, she would cry everytime i started vocalizing. so i got up and took her outside with me. she started copying how i was moving and the sounds and faces i was making. it was so super cute it made me smile. but after the midiwife, my mom and the doula got her she was content to watch cartoons. i had planned on using a birth tub. but when the midwife seen how i was acting she said i wouldnt make it. my husband had it all ready and came back to ask if i wanted it filled. the midwife said no bc i was already pushing on my hands and knees on the bed. we got me to the bathroom bc i thought i was going to poop again. i sat down and one push later my water broke all over the toilet. she moved me to the birthing stool. my body was pushing good now. i couldnt slow it down or anything. i felt like all my insides were being pushed out. i reached down a hand and could feel my lips bulging and stretching and then i felt the head coming. i kept my hand there the whole time until the head was out. then the midwife checked everything.2 more pushed and the body came with a giant gush and i was holding him. we got up and moved to the bed. i labored the placenta while holding him. they weighed and measured him, listened to him. and then i felt like i should pee. so we got up and went back to the bathroom. as soon as i sat down on the toilet i peed and then felt the placenta coming. i stood up and caught it with my hand to keep it from going in the toilet. lol. they tucked me back in bed and went to make me a smoothie. Baby had lots of gunk sounding in his lungs so they rubbed him and patted him and then finally put him in the bath to make him cry it out. he finally sounded better and they gave him the all clear. 2 hours of real work. but i guess i had been in labor for more than a day."

I haven't even re read it and edited it. And now I don't plan to do that either. Just gonna move forward and start posting other stuff. I recovered and healed quickly and am waiting to go to the doctor to get an IUD or the Essure. Pregnancy was hard, Birth was awesome and easy, but this many kids is real hard work. I am not going to have any more.

So there you have it. The last year all wrapped up. He is now 6 and a half weeks old. Hopefully I will have more time and energy to post more. I made diapers I want to tell you about :)

Meatloaf, My family's favorite.

2011-09-14T17:32:00.001-05:00

First, I would like to say, if you dont have one of these things, you need to get one!

I love mine. I dont have to hurt when I make meatloaf. I used to have to mix it with my hands and the coldness would make my bones hurt all the way up to my shoulders. It was painful to make my favorite food. The mixer does it all for me. I just pour it in and turn it on. Makes meatloaf like magic.

I did use the mixer attachment here. Since then I have made bigger batches and decided the dough hook was better for this.

Simple ingredient list: Hamburger, eggs, crackers, and salt and pepper. Sometimes I add cheese. I just use regular saltine crackers. I do read the labels to make sure that they have little or no sugar in them.

For 1 pound of burger I use 3 eggs. We just like it better that way. Then I will add half a stack of saltines all crumbled up.

It mixes it up so nice!

Heat the oven to 300 or 350. Bake for an hour or more, depending on how much burger you used. I use a meat thermometer to test to see if it is done. You can put it in a bread loaf pan, or just form it into a loaf in a baking pan. I just shove it on a cast iron skillet or in the dutch oven uncovered. It tastes real good if you put a layer of bacon on the bottom or on the top.

Cleaning and refurbishing old cast iron.

2011-09-14T16:59:00.000-05:00

I love cast iron. I think it is the easiest to use and clean. The only thing I dont like is how heavy it is. I have to take extra time and care handling it because I can hurt myself easily. It is so worth it to know that my family is eating healthy instead of being exposed to the chemicals that are in non stick surfaces. I have read that it can help add iron to your diet as well. Right now I am cleaning a old dutch oven. It was covered in rust.

I started by soaking it in vinegar. I am not sure if it matters what kind to use but I used apple cider vinegar. Which will from now one be referred to as ACV. White distilled vinegar is WDV. Just because I am a little lazy and prefer to shorten things. I left it sit overnight in my sink. I put some in the bottom part and added water to it. I think it was 30% ACV and the rest water. i then poured the same on the top.

Look at all of it coming up! I really should have taken pics before I started cleaning it, but like I said, I am lazy, or forgetful, or something. This is a pic of the "foam" it creates. It really did get rid of half of the rust that was coating this entire thing.

After I rinsed it all out and dried it, I started scouring off the rest with Baking Soda and steel wool. This dutch oven was so rusted it took me 3 months to get it in working order.

I scoured this thing like this for a week.

You can see there is still rust on the bottom. It isn't nearly as bad as the inside was. I hadn't even touched the outside with my scouring yet. The "wet" marks are where the oil dripped down from the top, when i had it sitting upright.

I did use many different techniques on this thing to try to get it right. This is where I baked oil on it in an effort to get under the rust. It did help. It helped bake off another layer of rust actually. I then used my steel wool and the baking soda again and got it even cleaner. The last part was the lid. I needed some extra help getting into the edges. I grabbed this wire brush and some oil and scrubbed it until it came off.

You can scrub it off with oil and steel wool, baking soda and steel wool, and bake it off and then scrub with whatever. When you finally got it clean you can wash it, dry it in the oven, then reseason it. My husband actually found this in an old lady's junk pile in the middle of a snow bank where it had been for many years. It is now one of my favorite things. There might have been an easier way to clean it. I have heard soaking it in lye works but that was too toxic for me.

The finished product. The lid from the top. Then the inside of the dutch oven itself.

Then the bottom of it. Because I had to actually have one picture where you could see before and after.

In order to season it, you coat it with oil, then bake it in the oven at 350 to 500 degrees. The oil coat needs to turn black. You should do it a couple of times. You need to put the pan upside down on the rack and put a cookie sheet that you don't like under it to catch the dripping oil.

I have used this to make all kinds of things already. I make a one pan casserole. I brown the meat, then add the potaotes and the other fixings then put it in the oven. From stovetop to oven. I do that with my skillets too. I have baked whole chickens, roasts, and even used it to make stock. I just took it on a camping trip. I can put it right into the coals to bake stuff. It was used to store food and keep it warm. Next time I would like to try and bake biscuits in it. I absolutely love how easy it is to keep clean. I dont have to scour it unless something sticks. Usually i just rinse with water and wipe it out, dry it off real good and re-oil it.

I am in love with my cast iron and already dreaming of restoring more. It satisfies me to get something for free that someone was going to throw away, make it like new again, and get 30 more years use out of it.

Dinner is served!

2011-07-09T10:14:00.000-05:00

Normally I like to take pics of all the ingredients when I blog about it but I didn't know how good it was going to be until after it was done.

So I am just going to show you a bunch of pictures of the finished product and tell you how I did it. You will need 1 bag of frozen tater tots, 1 small can of mushrooms, 1 can of Campbell's cream of mushroom soup, 1 can of green beans, a bag of shredded cheddar cheese, and 1 1/2 lb of ground beef. Plus some salt and pepper for seasoning. I use canned green beans instead of fresh. They are easier on my stomach for some reason. I think most of the sugar is processed out by the canning. It does not matter what kind of mushrooms you use, I use canned because it is easier to hide from my kids. They can spot the fresh ones from a mile away and they hate them. The cream of mushroom soup has very little stuff in it that would cause a problem. It does have wheat in it, but it doesn't seem to be enough to cause issues for us. As always, substitute stuff if you have an issue.

First you put the tater tots in the oven and bake as directed. I like to leave them in a little longer to make them crispier. I also put a little olive oil in the baking dish to help crisp them. I find that helps alot when I buy the cheaper brands. While that is baking I brown the burger in my cast iron skillet. This one is the largest one I have. When it is done browning I add the drained can of mushrooms and green beans. Then I add the cream of mushroom soup and half a can of water (just enough to get the rest of the soup out). Heat it up until it is well mixed. The tater tots should be done by now and cooling on the counter. Do not turn off the oven. But do turn it down to 375 at least.

You want to cover the top of the mixture with the cheese. Make it as cheesy as you want. I just make sure it is an even layer. Then evenly spread all the tater tots on the top of that. Does it look good yet? If you were like me, you forgot to salt and pepper the ground beef while you were browning it. It will be ok. There is enough salt in the green beans. I really should remember to be adding the salt as it helps with the POTS symptoms. It is really strange to be told by a doctor to eat more salt.

You can put the cast iron skillet right in the oven. I put it in the oven for about 15 minutes. Just keep an eye on it. You don't want to burn the already crisped tater tots but you do want the cheese to melt. This is absolutely divine! My kids love it, and according to them, that doesn't happen often with my cooking.

Homemade Lemon Lime Gatorade

2011-07-09T09:43:00.001-05:00

I have been told that I need to get more vitamin c. For two different reasons. The first being that I can't eat fruit. So I can't get any vitamin c that way. The second is that I have Ehlers-Danlos and taking in high amounts of vitamin c has been linked to less bruising and stronger connective tissue. But I can't eat or drink too much fructose. Lemons and Limes are high in vitamin c and low in fructose. The more sour a fruit is the less fructose it has. Fructose is really sweet. Each one of us can have half a lemon or lime twice a day. So I came up with this recipe all on my own (with a little help from google lol).

First we have a gallon jug, 2 lemons, 2 limes, and dextrose. You have to have some carbs in there if you want to use it as an electrolyte replacement.

This is what the dextrose looks like up close. Just like regular sugar only half as sweet. It has no fructose in it (which is what table sugar is, half fructose, half glucose. This stuff is only glucose).

They look so fresh! So juicy!

We also need some salt. That adds the sodium part of the electrolytes. The other half is potassium, which is in lemons and limes. I also add stevia for sweetness or else you have one sour drink. Then I have this fruit fresh stuff. It is ascorbic acid, dextrose, and some anticaking agent. Excellent source of vitamin c. I have tried other vit c additives but they all tasted funny or made it a funny color and the kids wouldn't drink it even though it actually made it healthier.

The pulp left after juicing. You really need to juice it well, to get all the juice out. You should be left with an empty rind.

This is only from 1/2 a lemon. You get lots of juice from all the lemons and limes.

So this is how you put it all together.

You pour all the juice in the jug. Then you add 12 or 14 tbsps of dextrose. On top of that you will add 1/2 tsp of salt and 2 tbsps of fruit fresh. The last is the stevia. I buy the really processed stevia. It is white and very strong. It has a little tiny scoop. Make sure you level the scoop. And add 5 scoops to the jug. Then stir it all up. It will look like the pic. Some sites I have read say to heat it up in a pot to make it a syrup, but I don't bother with that. I just add filtered water to it until it is full.

Then I pour it in a glass :)

My kids will drink this constantly if i let them. But like with all things I must moderate them. It still has some fructose in it and if they drink too much they will get too much fructose and then it does the opposite of what I want it to do. Instead of supplementing their vitamin c and rehydrating them, it would cause malabsorption. Moderation with all things.

Homemade sausage.

2011-06-29T17:50:00.001-05:00

My family loves sausage!!

Unfortunately all store made sausage contains sugar. After not having sausage for awhile my family started to get kind of upset. I don't blame them. I love sausage too. In my efforts to appease the angry savages I found a recipe. You take your lb of ground pork, you add 1 tbsp savory, 1 tbsp thyme, and 1 tbsp sage. I was out of sage so I omitted it. I also added 1 tbsp dextrose. I figured all the other ones had sugar in it for a reason so why not.

I shoved it all in my standing mixer and away we went.
I love this thing. No touching the cold meat, no holding a mixer up with one hand while holding the bowl with the other. Just flip on the switch and you have sausage!

Here is my finished clump of meat. I still need to make patties out of it but I don't mind. The meat is no longer cold so it won't hurt me to touch it. I purposely leave it to sit, whether I am making sausage or meatloaf or whatever, just so I don't have to touch cold meat. lol. This tastes better if it sits in the fridge overnight. That lets the herbs flavor seep into the meat, but like I said, I hate cold meat.

Sausage tastes great with potatoes. I always puts lots of salt on. And now that I can use powdered garlic again (just not too much), I add that on there as well. I fry them in olive oil with a lid on till they are tender, then take the lid off to crisp them up. They soak up the oil so you have to use enough. Here I am using my cast iron skillet with matching lid. The lid turns it into a dutch oven. I know cast iron is heavy and it hurts to use but the benefits outweigh the danger. I do not have to worry about all those pesky chemicals from non stick pans, I don't have to worry about scratching it up, and I don't have to worry about cleaning it. That's right. All I do is scrape till all the food is gone and re oil it. No need for soap. A little water and a scrub pad. Sometimes all I need to do is wipe it with a dishrag. Stuff comes right off. I would say that all that more than makes up for it's weight. Worth it's weight and all that.

My sausage patties. They look nice.

Don't forget fried eggs. Sausage needs eggs too. These are from a local farm. The farmer lets her hens runs free all over her property. They are mighty tasty!

They also lay many different colors of eggs.

And the finished breakfast. The kids ate it all gone. Even my husband said it tasted good. It is real hard to get a compliment out of him so I this means alot.

The Re-Introductory Phase.

2011-06-13T21:46:00.000-05:00

After having been on a strict elimination diet for 12 weeks, my family was excited to try all of their favorite foods again. We tried different veggies, fruits, and .... junk food. We needed to see how much sugar and HFCS we could digest. Every one of us can handle a different amount. And we all have different reactions to stuff we can't handle.

I have to admit, I got carried away. I missed all of those foods that were causing me pain and malnutrition. Most of all I wanted a Bavarian cream filled, chocolate frosted, bismark. Usually I would drink a premade chocolate milk with it, but I resisted the temptation. I did eat one. I ate 2 actually, but the second one was jelly filled. Within an hour I came to the conclusion that it had been a bad idea. As a matter of fact, It went about that well for everything we tried. Sometimes it was apparent in 20 min and sometimes it took an hour or two. But it all ended the same way.

My youngest 2 children get dark circles under their eyes. Just like me. The circles are a dark line that looks like eyeliner almost. It goes all the way into the inside of the eye and up the side of the nose. The more they eat, the darker it is. If it is chronic ingestion (like when we ate watermelon 3 days in a row) it gets puffy under the eye too. These 2 kids also (like me) get bloated. It causes them to have poor absorption. They can not absorb the nutrients out of a meal if it includes fructose in any way. I forget exactly how it works but the gist is that the fructose interferes with the nutrients bonding to the receptor chemical that pulls it across the intestinal wall to be utilized. So they don't even use it. The EDS means that we need to be taking in twice the amount of vitamins a normal person does, but the FMS means that we are even taking in half the vitamins a normal person does. I don't even know how that translates to fat or anything.

The 4 yr old actually has butt muscles now. And her face is rounder. She even showed me her biceps the other day. She has some now and she thinks it is hilarious to flex them at me.

My oldest child is going to be 16 years old next week. He has really enjoyed being able to eat his favorite food one more time. After each thing he tries, he says the same thing. He will not eat that again. He hasn't asked to try soda or fruit juice. I don't blame him. He gets real bad indigestion and pain, it makes his joints hurt, and he gets fatigued. He does not get bloated and he really doesn't get the circles under his eyes either.

What have we learned from this? We learned that the strict diet is the best. The stricter the better. When we do eat something that is not on our strict diet we have to be careful. We can only digest so much fructose at a time. The kids will get a much smaller helping than before. It was fun, albeit painful, to eat all that stuff one more time. The reintroduction of foods was a painful process, but it reaffirmed for us that we prefer the strict diet and how it makes us feel. We are officially off the elimination diet. We now know what we can and can not eat, and are well aware of the repercussions of eating the wrong foods.

Gluten Free Mac-N-Cheese with Hot Dogs

2011-06-09T19:01:00.000-05:00

My family loves hot dogs and macaroni-n-cheese. Our favorite was always oscar meyer hot dogs and kraft mac-n-cheese. The kids were really mad at me when they found out that all of that was not fructose friendly. They love their junk food. I don't blame them. I like it too.

They were pretty surprised to see that I had found a fructose free and safe to eat version. I found the original recipe in a book for fructose malabsorption but I modified it.I really hope they like it.

First step: preheat oven to 350 degrees.

First we start with safe ingredients. I used the pasta shown here. It is made with quinoa and something else. We like these the best of all the gluten free noodles so far.
The hot dogs are hebrew national kosher beef hot dogs. These taste awesome! They are not overpowering like some beef hot dogs can be and they have good ingredients.
I usually use organic whole milk but I was out so I had to use my unsweetened almond milk instead.
And of course, you need some butter. I prefer the taste of organic valley butter.

Put 3 tbsp of butter in the casserole dish, then put it in the oven until the butter is melted.

Then stir in the whole box of noodles. You want to coat all the noodles with the butter. Then you want to salt and pepper it. You don't need too much salt though because the hot dogs have plenty.

I cut up about 6 or 8 hot dogs and mixed them right into the noodles. (I wished I had used more. Maybe next time I will use 10.)

I stir it right in so that they get coated with the butter too.

I covered the entire thing with 5 cups of cheddar cheese.
Then I gently poured 4 cups of almond milk over it. (this was too much and should be cut back to 3 or 3.5 cups.)

Then you set the timer for an hour.

I don't know if you can tell from this picture, but there is still too much liquid after an hour. (Because I used too much milk.) So I had to set it for another 10 min, which slightly overcooked some of the noodles.

After 10 more minutes it looked right. This picture is a little different because I tried to use the "food" setting on my camera. I don't think I know how to use it right. I hope this looks as good to you as it tasted to me. I ate 3 helpings. Which I shouldn't have done but it tasted soo goood to me. I like the almond milk better than the regular milk. I can eat cheese fine but not milk. The kids prefer it with regular milk but they still love it this way. It is a very tasty substitution for our previous mac-n-cheese dinner.

My Birthday Breakfast

2011-05-26T21:39:00.002-05:00

Happy Birthday to me!!!!

It is my 35th birthday and I have been on this elimination diet for at least 3 months. We have been pretty strict and I have decided that we are going to have strawberries! Of all the stuff I have missed these would be on the top of the list. My kids beg for them and I feel so bad. So we are going to eat some.

Wish us luck.

My favorite piece of equipment, the kitchenaid mixer. I use this thing to mix everything. It is less work for me to use this thing than it is for me to mix it by hand or hold an electric mixer. Thank you mom for my favoritest birthday present EVAH!!!!

So first we mix the pancake batter. I used Bisquick mix. They make a gluten free kind. I really should have used it but I still had some of this stuff left. It uses dextrose instead of sugar so it is still sucrose/fructose free. However, the wheat will make my psoriasis worse. I am willing to deal with it.

Yummm. One of my favorite things. Melted Butter! I prefer the taste of organic butter. And it is better for you. I melted 2 whole sticks of it and added 3 scoops of stevia. The kind I use has no added ingredients. It is nothing but the stevia extract. It is processed until it is a fine white powder. The scoop is so small it looks like a doll spoon. This stuff is strong. It does not take much and I strongly encourage you to level the scoop. I also added 3 tbsp of "now" brand dextrose to make it more syrupy. And then I melted it in the microwave.

Here is the final result. Golden brown pancakes, sliced strawberries, with the butter poured all over the top. The kids and I all had plates like this and there was enough butter to go around. Even for thirds which all the kids ate.

The hardest part of this diet is not eating all the foods we love. We can learn to live without most stuff, if we have too, but not strawberries. I will gladly suffer for strawberries every once in a while.

In the future I will be using a gluten free mix or making my own from scratch with buckwheat, oat, and some other flours. I haven't gotten around to figuring out a flour mix yet. Surprisingly, this did not make me very sick. I had stomach pains for an hour or 2 but nothing real serious. I was tired for the rest of the day but that could have been all the walking we did the day before. If the strawberries were going to cause real problems, it would have caused 3 days of fatigue and 1 day in the bathroom. So now we can safely say that strawberries are an ok food.... for a treat. Not for everday of course, and not too many at a time either. They still caused dark circles under our eyes after eating them.

ETA: This did not make my psoriasis worse. YAY me! Also I looked at the gluten free kind. Unlike the regular kind, it uses sugar instead of dextrose. So boo on them.

Why I am not weaning my daughter.

2011-05-06T10:17:00.002-05:00

I have been asked countless times when I am going to wean my 19 mo old daughter. The answer : I am not. I assure you that she will quit nursing in plenty of time to attend college. There is nothing wrong with nursing her until she is ready to quit and everybody will get over it.

I weaned my now 4 yr old daughter when she was 23 months old. I was a couple of months pregnant and it hurt alot. I really regret it. I wish I had worked through the pain. She was already skinnier than I would have liked her to be. But I hadn't connected the dots yet. When she started solid food, she started losing her body fat. Then when I took away her breastmilk, she started looking like a walking skeleton with a distended belly. I now know that she was malnourished. it wasn't because there was no food. I fed her alot, all the time, anything she wanted. It was the fructose malabsorption. She was eating the wrong food and it was causing her to not absorb any nutrients or fat. This went on for a year. I kept going to the doctor and asking. I knew she wasn't looking right. They kept assuring me she was fine. I couldn't help but think that she looked fine before I stopped nursing her. So I did research. Breastmilk is high in easily digested fat. It also has properties to it that help heal guts, reduce bacterial overgrowth, control gut yeast, and help regulate metabolism. I wanted so badly to start nursing her again. I asked our family doctor and she gave me some suggestions to help, but alas my poor daughter had forgotten how to nurse. So I started pumping for her. Every morning and every afternoon I would pump. After getting her diagnosed with fructose Intolerance I learned that breastmilk is fructose free. Even the high amounts of fructose I was ingesting would not cross into the milk.

After having been on the diet for several months, my now 4 yr old daughter looks great. She has a round face again. She has grown muscle where it belongs. Before she had no muscle because her body had been eating it for fuel. I pumped breastmilk for her to help her build up fat and muscle. It was the only food I knew for sure was good for her. I think she has reached a point in her life where she no longer feels the need for breastmilk. She no longer asks me to pump for her every day. She only asks on days when she feels ill, mostly because she ate something new that we were trialing and it didn't agree with her.

My now 19 mo old daughter shows the same reactions. She was not old enough to test but the GI doctor assured me that because she had signs and all the other children had it, that she would have it as well. She will gladly chow down on fructose free food. I follow her lead. That is how I will find out what makes her stomach upset and what causes her issues. If she doesn't want to eat it, then fine. She doesn't have to eat it. Later, she will usually steal the same food off my plate. I am not worried about what she is not eating because I know that every time she nurses she is getting the perfect food in the perfect amount. The longer she nurses, the healthier she will be. That is why I am doing it. For her. It has nothing to do with me wanting her to stay a baby. To be honest I could do with a little less nursing gymnastics or accidental nipple injuries. I do get slightly embarrassed when she tries to dive into my shirt in public. I do see the looks people give me and it does hurt my feelings. But I am willing to go through all of it. For her. Because it is what is best for her. And everybody who has something bad to say or dirty looks to give me can all jump off a cliff. Because none of you matter. She matters.

This message is supported and approved of by her primary care physician, her geneticist, her gastroenterologist, and her mother.

Why I don't want Flouride in my water.

2011-05-05T13:16:00.000-05:00

Let's look at the reason they put it in there. To keep your teeth strong. Doesn't that mean that it is a medicine? Or a supplement? Either way, don't we have the right to not be medicated against our will. If you want flouride for your teeth, you have the option of buying flouride toothpaste or getting flouride treatments from your dentist. But we do not have the option of buying the flouride-free water. The only way to do that is to have your own well. Which means you are not living in the city or relying on city water.
This means that we are being medicated every time we drink it whether or not we want to be medicated.

The fact is, I pay the city for this water. I wish I didn't have to. I wish there was an option to buy it with or without. Even if you buy bottled water, it will still have flouride in it. If you drink juice, it is mixed with flouridated water. Your tuna packed in water.... mostly likely flouridated. Why? Because companies use water that is chemically cleaned, and that means adding flouride to it.

Every time I read something about flouride I get a little bit more peeved off. The flouride they use for the water is a chemical waste product. Waste they can't get rid of anywhere else. It isn't even the kind of flouride that would do any good.. if flouride actually does any good. The evidence that I have seen, doesn't even support that theory. It seems that people with flouridated water have just as many cavities if not more than people without flouridated water. So putting "medication" in our water to help our teeth doesn't even seem to work. More and more cities are removing flouride from their city water. More and more studies are showing that the amount of flouride in our water is causing flouridosis.

I am convinced that flouride in my water is making it harder for me to heal. Flouride is not meant to be ingested, but yet we drinks loads of it everyday. How would I go about getting my city to remove it from the water supply. Better yet, how can I find myself a farm to live on so I can have a well?

Everything we have been diagnosed with.

2011-05-05T10:00:00.005-05:00

Me:
Diagnosis:

Ehlers-Danlos Type 3. Hypermobility.
Dysautonomia
Orthostatic Intolerance
Fructose Malabsorption Syndrome
Fibromyalgia
Gastroesophagitis Reflux Disease
Erosive Distal Esophagitis
Irritable Bowel Syndrome
Scalp Psoriasis
Borderline Personality Disorder
Agoraphobia
Post Traumatic Stress Disorder
Obsessive Compulsive Disorder
Social Anxiety Disorder - Panic Attacks
Recurrent Depressive Disorder

Hospitalizations:

1990- Broken Collar Bone
1995 Gave birth - 3 day stay
1995 Severe hematomas and concussions from spousal abuse
1995 Broken Jaw
1999 Tubal Pregnancy
2001 Emotional Instability due to overprescribed medications
2007 gave birth - 2 day stay
2009 gave birth - 24 hour stay

David, my son:
Ehlers-Danlos Syndrome type 3 Hypermobility
Fructose Malabsorption Syndrome
Postural Orthostatic Tachycardia Syndrome

Laura:
Fructose Malabsorption Syndrome
At 5 years old she will be formally diagnosed with Ehlers-Danlos type 3. She has the functional gut disorder associated with it.

Emily:
She can not be officially diagnosed at this age. However, the doctors told me that she will have EDS because she already shows signs of fructose malabsorption (gets red under her eyes when she eats the wrong stuff), and she has brittle teeth. So she has it too.

Simple spinach dip.

2011-04-27T12:23:00.000-05:00

Sometimes I make stuff that tastes good. My kids say that it tastes good more frequently now than it used to. While that makes me feel good now, it makes me wonder what my food used to taste like. Never mind, let's stick to the present.

Everybody at the table loved this. It could use some tweaking, but it is very simple and easy. I used half a bag of baby spinach from the store. I can't wait to buy it from the farmer's market soon. I also used a thing of sour cream and some salt. Told ya it was simple.

I filled my food processor. I bought this thing for $5 at a garage sale 2 years ago. I think I get alot more use out of it than the previous owners did.

See? It works great! I Like to have some chunks left, but it will keep going till it is complete mush.

Add some sour cream and mix it up. The more sour cream you use, the less spinach taste. I like the spinach taste though.

Now taste it! Yep you guessed it! Needs salt. Add it until you are happy with it. Remember to add a little at a time. If you like it thicker I would suggest using cream cheese as well and blending the cream cheese and sour cream together till smooth then adding the spinach. I will probably try this next time anyway. Maybe make more of a spread or a thicker dip at least.

We have to keep a detailed food journal of everything we eat. To make sure we are eating safe food in safe amounts and also to document when we try new things. That way if we have symptoms we can look back to see exactly what caused it.

I tried a new smoothie recipe. We aren't really supposed to have cocoa. But my kids really missed chocolate so I made one just once. The only symptom we got was a headache from the caffeine. So we will try it again with less cocoa and no yogurt. We have decided to cut that out too.

It has been brought to my attention

2011-04-25T14:21:00.000-05:00

That I need to go more strict with our already strict diet. There are some things I can add to ur diet but several things that need to come out. Like wheat. I just talked to ur dietician from the UIHC and she told me that I need to cut out that as well. There are other grains we can use to make bread but I have never tried them. Which means that those snack crackers have to go too. And other junk food like puff corn. I hadn't even had them long enough to add to the safe list.

And then the doctor's office called. They had some of the test results back. Everything looks fine except my son's blood test showed he had ketosis going on. That is when you have no glycogen stores in your liver and your body starts burning your fat for food. If it goes on long enough it can cause problems. The nurse said she thought it was fine because he had been fasting. I said no. He had not been fasting. We had just eaten lunch. I made sure he ate before we left. According to my diet journal he ate the following: breakfast- oatmeal with butter and dextrose (glucose). Lunch- corn noodles, turkey, cheese and pickles. then he came home sick and ate home made bread with butter. that was all before we left for the appt. There was plenty of glucose and carbs there. So we will have to get more tests done. In the meantime I really need to get him to try to eat more carbs.

They also called to let me know about the appt for his echocardigram (i think that is how it is spelled), and my appt to get formally diagnosed. His chest pain keeps getting worse. I am scared for him.

A new Diagnosis.. Ehlers-Danlose Syndrome Type 3

2011-04-19T16:22:00.000-05:00

I went to the appointment yesterday expecting to get answers. I wanted to know why my children felt and acted like they did. It wasn't normal kid behavior. It wasn't just their age. They weren't just lazy. I knew something was wrong. I could see it in their faces. The dark circles under their eyes, the lack of energy, the bruises that came out of nowhere, the clumsiness, and the un-talked about diarrhea and constipation. All of these things, I was being told were ok, normal, expected. But I knew something was wrong. Nobody wanted to help me figure it out. They weren't worried because they hadn't had any organ failure or other extreme health issues. I was worried because I could tell that what we all had would turn into what my mom and I have... Pain. And not just pain, but PAIN. CONSTANT. All the time pain. When we move, when we don't move, when we breath, when we hold our breath. It is a living HELL being in pain all the time, being tired all the time, feeling so weak in my muscles. The last thing I want for my children is for them to feel this way. So, I started seeing doctors. I got my stomach tested for sugar intolerances and found out I had fructose intolerance. So I figured that maybe my kids had it too and I wanted to get them tested. The pediatric gastroenterologist told me they couldn't possibly have it. Guess what? They all had it too. SO, if we all had it maybe it was genetic. They referred my kids to a metabolic geneticist. We had that appointment yesterday. I wanted to test for hereditary fructose intolerance. It seemed logical. After 5 minutes with this doctor I felt like someone believed me.

She said she would draw blood and do all the tests I wanted to make sure that all their organs are fine. We have to wait for the results but in the meantime she wanted to ask me some questions. As we were going through the list of questions, she noticed I had burned my hand. She asked about it and I told her how clumsy I was and how injured I can get. She immediately asked to see my hands..... then she bent my thumb back until it touched my arm. Try it... I will wait.... See if you can do it too..... Can you? You are not supposed to able to. If you can you are hypermobile. Joints aren't supposed to be that flexible I guess. She had me bend some other things too, fingers, arms, knees, then she had me bend over and place both hands flat on the floor while keeping my knees straight. I thought it was normal to be able to do that. But no. It is not. Well by now I am feeling pretty abnormal. You know, this was supposed to the kids' appointment.

She looks me in the eye and says..... "You have Ehlers-Danlose Syndrome..... type 3. That is the Hypermobility one."

Ummmm. I was not prepared. That wasn't on my list of possibilities and I felt caught off guard.

Then she says, "I am diagnosing your son with it too. We can't officially diagnose your daughters until they are 5 years old so I will see you back on their 5th birthdays to confirm they all have it officially." So all my kids have it too. She also said that based on my family history, she can guarantee me that my mother and my mother's other children have it as well.

So if you are related to me through my mother's side of the family....... you might want to try these tests. This condition is related to other health issues as well. Impaired healing, GI issues, chronic fatigue and chronic pain.

Please read the links posted in the reference section.

There is no cure. Only management. We ave to protect ourselves from serious injury while trying to live normal lives. Healing can take longer than normal. There are also GI issues like chronic constipation and chronic diarrhea that can injure our insides. I will be getting with a dietitian to figure out a safe way to include fiber in our fructose free diet.

On one hand, I am happy to have an answer. I have lived my whole life wondering "why me?" Now I know. I can not make the proper connective tissue. My "recipe" is all wrong. I can tell my kids why they feel the way they do. I can sympathize with them and help them find ways to cope.
On the other hand, I am very sad. I had set out to find a reason so that I can prevent my children from having chronic pain. I now know that I might not be able to prevent anything. They will develop it if that is how their body is going to express that genetic defect. All I can do is try to keep them from injuring themselves in a way that will exacerbate their condition. That makes me feel helpless. I wanted to save them from my fate.

List of Dietary Fructose Intolerance Links

2011-04-19T15:49:00.001-05:00

http://en.wikipedia.org/wiki/Fructose_malabsorption

http://www.uihealthcare.com/topics/medicaldepartments/foodandnutrition/dfi/intro.html

http://www.ncbi.nlm.nih.gov/pubmed/15624540

http://www.foodintol.com/sugar.asp

http://en.wikipedia.org/wiki/Fructan

List of EDS links.

2011-04-19T15:44:00.000-05:00

http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome

http://www.medicinenet.com/ehlers-danlos_syndrome/article.htm

http://specialchildren.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=specialchildren&cdn=parenting&tm=460&gps=181_378_1011_581&f=00&su=p504.1.336.ip_&tt=2&bt=1&bts=1&zu=http%3A//www.ehlers-danlos.org/index.php%3FItemid%3D9%26id%3D11%26option%3Dcom_content%26task%3Dview

http://emedicine.medscape.com/article/943567-overview

http://specialchildren.about.com/od/ehlersdanlossyndrome/a/EDSschool.htm

Adventures in Cake Making!

2011-04-18T11:48:00.000-05:00

So instead of trying to make a simple cake I decided to make a yogurt pound cake and yogurt cream cheese frosting. I had a lot of yogurt in the fridge and it sounded good.

First I preheated the oven to 325 deg and then greased and floured the bundt pan. You have to remember the flour part. I always forget to flour the stupid pan. Flouring after greasing is very important. I have learned this after royally messing up some otherwise good stuff by having it stick to the pan and coming out in chunks.

Then I sifted together 2 1/4 cups flour, 1/2 tsp baking soda, and 1/2 tsp salt.

I run it through the sifter about 3 times.

All nice and finely sifted.

In another bowl, I creamed together 1 cup butter and 2 cups dextrose.

Then we beat in 3 eggs, one at a time. Then add 1 tsp vanilla extract. I found some vanilla that uses glucose instead of corn syrup.

Then we need to add the flour mix and the yogurt. I used 8 oz of unflavored plain whole milk organic yogurt. you want to alternately add the flour and the yogurt until just incorporated.

I forgot to take pics of it poured into the bundt pant. It was really thick and didn't pour. I had to scoop it and smash it in there. It said to bake for 60 min. So in the meantime I got busy with the frosting. I used 14 oz organic whole milk Greek yogurt, 4 ounces cream cheese, and 4 oz butter.

Beat until creamy. Then we will add about 4 cups dextrose for now.

Taste it. It won't be as sweet as other frostings because dextrose is less sweet. Table sugar is half glucose and half fructose. Dextrose is all glucose. Fructose is sweeter than glucose and that part has been removed. I do not suggest adding more until it is candy sweet. Get used to less sweet stuff. Too much dextrose will raise your blood sugar just as well as regular sugar, but taste half as sweet while doing it. Have you ever eaten too many smarties? or too many Sweet Tarts? Those are dextrose candies with artificial flavor.

Looks like the cake is done. I flipped it over to take a picture of the top. I forgot to do that before I took it out of the pan. It came out very nice and very easy.... because I remembered to flour the pan. :)

I separated the frosting into 2 bowls. One we colored green. The other we added more dextrose to until it was more like icing and the added some Fun Dip, the strawberry flavored. It isn't very artful, but my daughter loved it. I have no talent for cake decorating. We did put it in the fridge to help the frosting set. It is made out of yogurt and was runny at first. But it got stiffer in the fridge and stayed that way without needing to be re-refrigerated.

It was very popular. The kids loved it!

The leftovers didn't last long. They all wanted it for breakfast. Laura ate the head. I couldn't keep my hands off it either. Yummy!

Things I would have done differently.....

Well, first off, I would not refrigerate a pound cake. Especially before it is fully cooled. I will definitely make it again, but I will use an icing instead. Melted butter mixed with dextrose and drizzled on.

The frosting was awesome. I am so glad I made an insane amount and saved all of it. I will be using it on the next cake, which will be a simple regular cake. Shaped as a butterfly. The strawberry icing was the best part. I know it was artificial flavor and color, but at this point we can't use real strawberries. They have too much fructose.