WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Sunday, September 21, 2014

Pickle Kraut


(CAUTION Kraut and ferments are not recommended for those with Histamine issues or Mast disorders)

Pickle Kraut:

Some brilliant fermenter figured out this simple and glorious take on kraut. You simply add dill pickle seasonings to your kraut and you end up with kraut that tastes just like delicious dill pickles.

Any where you would add pickles you can now add probiotic and nutrition packed kraut instead. (cabbage has different values then cucumbers and it is easier to ferment kraut then pickles) On a sandwich, on a burger, in a salad.. Kraut is one of those flavors that isn't always the easiest to get picky children or picky spouses to enjoy, but when it tastes like pickles? No problem. :-) (Abby cannot eat it, anything fermented causes a reaction for her) .

To 1 head of cabbage and brine(I use 2 to 2.5 percent brine with pink himalayan salt for mine) I place the following in the bottom of the vessel(I prefer Fido's for kraut you still have to keep your kraut under the brine though! ):

2 teaspoons mustard seed
3 cloves of garlic
2 Tablespoons Dill weed.

I have used fresh dill packed into the bottom and that works well. This batch I had no fresh dill on hand(forgot to grab some) but was able to use dried dill weed.

I have found that if I cut a small square of cotton muslin and tie my herbs into a bundle with some cotton kitchen twine I can place the herb "bundle" in the bottom of the fermenting vessel and not have to worry about bits of herbs floating in my brine to the surface. When I am ready to eat my kraut, I simply pull the bundles out and toss. All the flavor and none of the mess.

In the picture you will see a dark lump in the bottom of the jar, that is the dill. My kraut is not glamorous to look at, but when it is done, it sure tastes good!

Thursday, September 18, 2014

Red Band Society- just say NO!

Drama, Glamour, Entertainment, warmth, friendship, God like Drs and Nurses...


If for half a second I thought a Soap Opera made about Chronic Illness and/or life threatening illness would make life easier for those who are sick, I would support it. This is NOT going to help.



You take a vulnerable population of patients and patient families and make them dependent on a hospital.


Sounds like a crisis for Hospitals and a crisis for Patients and Drs in the brewing. The bar will be set impossibly high. As it is, terminal is terminal in most cases and for patients forced to live in the hospital they are forced to face overwhelming loss and grief. The type of fantasy life being sold in this show is going to hurt the very population they have targeted. To set such a fantasy in the mind of an ill teenager, is disturbing.


1)If you are ill enough to live in a hospital odds are you don't have a whole lot of energy to wear full makeup and trendy clothes and jewelry- well unless you are wealthy enough to pay nurses who are willing to keep you glammed up, or family that is focused on your looks.


2) Family. The family should always be the focus of patient care. Not the Drs, Not the Hospital and not the Nurses. Patients first, then Families.


3) Hospitals are bad places. Not places that folks should idolize they can find life long friends, social satisfaction, or appropriate emotional and social development as teens.


4)The vast majority of Hospitals simply aren't going to or are unwilling to deliver such "special" care to their patients. The show setting is little more then a major fantasy and is only going to make patients very disappointed by what they are offered. Heck, most hospitals cannot even manage to provide allergy free food for their patients, let alone provide a fantasy world where dying teenagers can bond, be glamorous, and provide important moral lessons to viewers.


5) Hospitals are a place of LAST resort for humans. Germs, separation from family and friends, extremely expensive, if you don't want to run from a hospital the second you feel well enough to put on lipstick, something is wrong with you. How Drs. and Nurses manage to show up at a Hospital daily and not lose their minds is beyond me. Sorrow, illness, dredges of society, death, grief, loss, germs, depressing... has to weigh against the very few they can heal or simply "improve their quality of life".. No wonder Drs. get paid the big bucks, they work in hell.

6) Pressure on patients. After America see's how these "fantasy" chronically ill teen patients behave, new and likely unfair expectations will mould new stereo types that our Teen's will be forced to mimic- that is the last thing a healthy teen needs, let alone one struggling to live.

7) If Hospitals, Drs. and Nurses were getting complaints about care before? Standby- after America see's this show they are going to want and feel entitled to a whole different level of care.


Worst thing about this show? It will be a hit.


Tuesday, September 16, 2014

Mitochondrial Disease Awareness 2014

Each year that has gone by I have noticed that the population of Mito Patients as well as the information has changed.



This year brings a lot of mito awareness to cancer, heart disease, Huntington's,Autism ,EDS, Mast,and even Gulf War Syndrome.


Unhealthy Mitochondria are tied into a growing list of diseases and disorders.

For quite a few years, it was just the small children who's parents wrote blogs, just the sickest of the Mito population. Now lots of adults are blogging about how "Mito" impacts their lives.


Today, there are far fewer Mito blogs for children(because of the higher risk of CPS "not" understanding Mito, families are encouraged to remove their web presence.)but facebook has become the community. Hundreds of patient parents have "pages" on facebook now. I don't think I could possibly list them all. I am sure over the years that will change too.


Today you will find a lot more adult patients. A harder group in general to diagnosis but also a more hopeful group in general. The prognosis is less likely(though some will be terminal) to be life threatening.


This year brings a little more understanding to the Mito community. Everyone is starting to realize that their "mito" is likely very different then the next. Some go to College full time, some work, some only have to worry when they catch a virus or need other medical care. Some are very severe and need around the clock care. Some like Abby react to what seems like everything.

It is clear there is no "right way". Some children benefit from tubes, some don't. Some families don't mind a tube some do. Some go to public school and some don't. What works for one family doesn't for the next. I think most are realizing now that there is no one size fits all. What works for Abby could be dangerous for the next, and what works for someone else could kill Abby.

One thing that is absolutely clear, this is a disease or disorder that hits far and wide. No matter your income, heritage, values, diet, culture- you need healthy mitochondria.

ALL patients have done a good job spreading awareness- no patient should be made to feel they aren't doing enough, just dealing with the day to day is plenty. In past years there has been a lot peer pressure to donate money or time, and considering it is a disease of energy a lot of folks just cannot. This year is a little better. There is definitely less pressure and stress being distributed on the shoulders of patients- exactly how "support" should be.

Drs on the other hand, aren't all quick learners. If it isn't in their Medical Reference guide, or they weren't taught in medical school, you are still going to run into resistance at least for a few more years.

On one hand, that is good! American medicine has moved along as well as it has because the focus sticks to science, to facts. That type of training is what makes it so clear to me that for Abby and many others there are no absolutes, they haven't found any yet.

On the other hand, they can look at a patient in front of them that is clearly suffering and when the labs are normal they are still telling patients "you are fine.". Hardly.

Lucky for Abby we have found some great Drs. Some patients though won't ever get to see the right Drs. and that saddens me.


Drs are in awkward place right now. They are no long "authoritative". They give advice. Many are glad to work with their patients in a partnership others resent it.

We have seen story after story of Drs. taking control of a child's (a few adults too)life through their hospitals and the courts this past couple years. They feel they have the "right" to force a family to take their "advice". For the most part at the end of the day? Those Drs. have caused more harm then good.


The hero of this year for Mito Awareness is Justina and her family. They spread awareness, in a very big way.. Drs. were FORCED to listen and learn about Mito. CPS and State leaders(federal level too) have been forced to learn about Mito. The cost Justina paid was the loss of her ability to walk. Probably her trust of the medical world has been turned upside down. Her family was tortured. She was tortured.

Many in the Mito community rallied around Justina including MitoAction. Though, there were plenty of patients or families of patients who felt it wasn't their place to "get involved", which shows we have a lot of work to do yet. I feel strongly, that had MitoAction not stood up and vetted her status as a Mito Patient, Justina would still be locked up and being experimented on. MitoAction is the only one who actually supported the patient. Who did not put their reputation or fiscal goals before the suffering of a human being. Patient support should be number one from a Non-Profit Patient organization, right? MitoAction did as they promised, they provided support.


As I type this, there are other families(hundreds over the years across many different diseases) that are being targeted by Drs who don't believe in Mito, or work for Hospitals that seem determined to put their needs as For profit organizations before the needs of the patient.. the fight has just begun.


A long hard year for everyone.

I know my journey as Abby's Mom continues to evolve. No sooner do I think I am helping her on the right path, I find we need to change gears. I continue to struggle with trying to define "mito" in my brain. Like many of the Drs. I find the facts lacking. Unlike the Drs it is clear to me that patients are suffering and some dying and ignoring that, avoiding it won't make it go away. At the same time, treating something we don't understand isn't the best idea either.

What I have learned this year? A lot of focus on cure's and treatment, yet none on prevention.

It has been shocking the number of articles I have collected that show many medications cause mitochondrial dysfunction. That many toxins cause Mitochondrial Dysfunction. Would love to see a list of those slipped in with every Medical School diploma. There are now tests that can be easily tested on new (or old) medications to test for impact on the mitochondria, not required by the FDA(course not). I believe some companies on their own are testing but it isn't enough.

The overwhelming majority of Mito patients have no known gene mutation. Even more interesting is that they are finding perfectly healthy folks with the same disease causing mutations.. which means to me, we don't know squat yet.

A few people diagnosed with Mito(and given a bad prognosis) are now doing great. So hold on to the hope.


Awareness took a huge leap this year, and it continues to be the patients that pay the hefty price for it. Justina,her family and the hundreds of others that are literally being robbed of good health because Mito is still such a mystery, they are paying the hefty price. Each time a Mito Patient see's a Dr. and they they are treated like they are nuts, they are paying the price. Each time a Mito patient gets the wrong treatment, they are paying the price. Each time a mito patient is unable to participate in what they long to do, they are paying the price.


I had hoped by this year we would know "why" or "what" with Abby. Still don't. Still pissed. Still a little crazy. Still fighting.


Still hopeful.


May 2015 be easier on ALL of the Mito Community.








Sunday, September 14, 2014

Make it "Mini"

Mini French Toast or Giant Peaches?

Fact of the matter is, sometimes when you are avoiding corn and lots of other allergens as well, you are just plain limited.

Abby does love a basic Irish Soda Bread which came in handy when she no longer tolerated yeast. So we tend to have irish soda bread on the counter on a regular basis.

Right now she has been very reactive(fall allergies) so a very very limited diet and so I am always looking for a way to liven up her plate.

Size. If you serve tiny doll size pieces of toast, or tiny tiny little sandwiches, or in this case itty bitty french toast? For some reason it seems like a very different food. I at least get that satisfaction of serving something "different" even if we are talking size and not recipe.

Hobby Lobby, Michaels, even Walmart and Target do a good job of keeping mini size pans on the shelves. (these I found at Michaels and I have an even smaller set as well) These tiny loaf pans were all of a couple bucks and from miniature loaves of bread to chicken meatloaf they have added well worth their cost in entertainment value to our meals.

So, if you hit a slump and feel limited or bored with what you can eat? Try making it a different size. Itty bitty just seems to taste different.


Wednesday, September 10, 2014

Drs HATE Mito like they HATE Pain. Mitochondrial Disease Awareness 2014

The big question is always- Why.



1) They cannot define it, label it, measure it.


2) They were not taught about it.


3) They have been taught Wrong.



If you go to a Dr. complaining about unrelenting fatigue and pain, or fatigue that comes and goes your Dr. will probably run the normal basic panels. If you are a female odds are they will check your thyroid(10,000 times) and if your basic bloodwork is normal give you a script for anti depressants because even though you don't feel depressed, you must be. If you have 10 pds to lose? That is to blame. If you have a husband and children? That is to blame.


If you go to the Dr as a teen girl complaining of fatigue and pain- you are just dramatic. Blood work looks pretty normal? IT is the parents fault for "indulging" the teen girl drama. I remember Abby fainting at school and no one calling and telling her to get over it. Throwing massive protein and blood, but she needed to get over it. Abby even had medical documentation since birth of muscular issues - even then, the advice repeatedly was to "push" her, and ignore it. That robbed her body of years.


Good luck getting a referral. At best you may get referred to the Rheumy, who will likely run a blood panel and assure you that nothing is wrong and to get more exercise, maybe more of those anti depressants, because fatigue and pain if not measured in labs MUST be depression.



You might even get a referral to a Mito Specialist(after you spend a year finding a specialist that will see you, get on a massive wait list..) and some may not be as helpful as you had hoped.


OF course after a few years of being told you CANNOT feel that bad because your labs are fine, you do start to wonder if you should take those depression pills. Some of those anti depressants can cause Mito dysfunction, so you might end up even worse.


Until an effort is made to teach Drs. in Med School, until the Medical Associations prioritize Mito Education your Dr. won't understand Mito, and what a Dr. doesn't understand and cannot quantify with that basic CBC, odds are the Dr. doesn't believe.


Remember in the 80's when Chronic Fatigue was first defined ? Drs and patients laughed! IT was ludicrous to think you could have an undefined disorder with no specific lab tests and call it a disease. I remember very clearly a Dr. calling it a guise for lazy. Today we know it is a REAL disease that needs specialized care that the patients are hardly lazy.


You might have a Dr. that knows a little about Mito, but usually it is about the profoundly disabled spectrum. Which means if you have a mild presentation you will be told it is "impossible" you have that, or your Mito Disease Specialist was wrong. (been there with Abby) I have heard patients with profoundly disabled children told by many Drs. that it isn't Mito. A local Dr. may refuse to even accept the findings of an out of State Dr, they won't even bother to look the Mito Specialist up to see if they are a licensed Specialist in good standing. It can be a real war zone out there to get any Dr. to believe you let alone "want" to help you.


So, you ask yourself, "Is Mito real?" My Drs don't seem to think so.

There are plenty of open minded Drs however. Abby has a number of them that admit this is their first Mito patient. Or admit they had no idea an adult could have Mito. Or that they had no idea Mito could be milder and not terminal in childhood. A lot of Abby's Drs do a good job not judging, or working in partnership with her and I.


Until Drs. are taught and believe that Mito is real, there will be no awareness.

Our Society in general feels that anything to do with healthcare is best advocated for by Medical Specialists. Medical Professionals will not advocate for a disease they either don't recognize or don't believe is real, I don't blame them. We have been taught by so many Drs. that if doesn't show up on that basic blood panel, it cannot be real. Like pain, it can be very difficult. Pain can cause a patient to be completely disabled. Pain is individual, there are few tests that can "prove" a patient isn't lying about their pain or if the pain is acknowledged, odds are it is assumed the patient is exaggerating.(all patients are assumed to be lying about pain FYI) The testing used for Mito is complex. Much comes down to how it is read by any given Specialist. Even a genetic mutation is questioned because you can have a genetic mutation for a disease and not develop the disease.

Drs. depend on tests. On proof. On absolute Science. If it isn't in that lab report, it isn't real.


I appreciate the need for scientific proof, after all if I don't have cancer I don't want to be treated for cancer.

We know that patients with untreated pain suffer physical consequences.They can develop secondary health issues from the chronic pain. Same thing with Mito patients, ignoring their health complaints or covering them with anti depressants isn't going to make them go away. They will get sicker and sicker. Probably would have been easier to listen in the first place, right?


So as Mito Awareness week approaches, be gentle with other Mito Patients. Each patient advocates as best they can. Most struggle to get out of bed daily let alone organize a fundraiser. Most use every available spare dollar in their household budget to cover medical care,medications and safe food. Most struggle to feed themselves let alone show up for a lengthy walk. Most struggle to even find a Dr. that has heard of Mito let alone find the energy to sell Mito junk for fundraisers. Many are working hard to live their lives fully without spending any more of their precious energy on Mito.

We should however be looking to our Drs. to advocate for Mito. For Drs. to teach their peers. For Drs. to teach Mito in Medical Schools. For Drs. to accept that like pain, often Mito cannot be measured by that CBC blood panel. Sometimes even a science based field like medicine, needs to have a little faith and put the patient before the CBC.


Lastly, Thank your Mitochondrial Disease Specialist. If Drs. as a whole think patients are nuts for believing in Mito, just imagine what they think about the Specialists who work so hard to provide us a better quality of life. (Same goes for those Chronic Pain Drs- they go through HELL with Federal government daily to provide you with pain relief,at great personal expense.)



Sunday, September 7, 2014

Chicken and Rice in the Rice Pot


I love a quick meal, I love an all in one dish even more. Cooking in the rice pot makes this fast and easy. Feel free to add any veggies you like in addition to the peppers or swap out the peppers for peas or any other veggie you tolerate well. We are huge fans of any meal that contains turmeric and ginger. Both have terrific nutritional value and flavor.

The baby bok choy is the ONLY green leafy Abby tolerates right now. Needless to say, we work hard to work it into any meal we can. She reacts to the mature bok choy but for some reason the baby bok choy as long as it is cooked she tolerates.



Rice Pot Chicken and Rice:

2 cups rice(and the appropriate amount of water or chicken broth)
1 sauteed red pepper
1 Tablespoon finely grated fresh ginger
1 teaspoon turmeric(fresh is best but powdered works fine)
salt and pepper
1 finely sliced chicken breast


I saute the red pepper and ginger before adding it to the rice pot to make sure it is tender.


Add all the ingredients to your rice pot give it a stir and cook on the white rice function.


It is important to cut the chicken in thin slices to make sure it cooks completely during the white rice cycle.


The Baby Bok Choy-

A few handfuls of fresh baby bok choy(ends cut off and cleaned well, they tend to trap dirt like celery or leeks)
1-2 cloves of finely minced fresh garlic(I usually have some roasted in the fridge that I make and keep on hand to hurry it along)
coconut oil.


Saute the garlic in the coconut oil.

Add the baby bok choy- cook on the stove top for just a few minutes. I usually throw it in and put a lid on and shake the pot now and then to make sure all the bok choy is cooked. This only takes a few minutes. You know it is done when it wilts.


Fast, easy and full of goodness.

Friday, September 5, 2014

Mito Awareness

Thursday, September 4, 2014

Savory Chickpea Carrot Pancakes (gluten free, corn free, dairy free, soy free


These are easy and really tasty and you would never know it was chickpea flour. I saw a show that talked about "Chilla's" which when I searched had quite the variety of methods and ingredients. Usually they are seasoned with cumin,ginger or other stronger spices but we like these left very simple. When they are simple they go terrific with anything from bacon for breakfast to a side with stew for dinner. I have cut kimchi into these and they were great for a korean inspired side dish. Very flexible. Honestly with a little coconut yogurt(sour cream if you can have it) and green onion they are a very satisfying snack. In our house potato pancakes are the universal favorite food and these are a very close second.




3/4 cup chickpea flour ( safest to grind your own)
1/4 cup rice flour or all purpose gluten free flour (these will work with just chickpea flour,beans+rice though offer more value)
1/4 cup plain coconut yogurt (homemade)
Salt to taste (I always end up needing to salt once they are cooked so don't worry if you don't add enough)
1/2 to 1 cup water (looking for a pancake mix texture so start slow and add only what you need)



1 tablespoon grapeseed oil or coconut oil for frying(TJ's for grapeseed and Tropical Traditions for coconut)
2 eggs(many recipes for Chilla's call for no eggs the texture will be different but if you are egg free they would still work)
1/2 finely grated organic carrots(shredded beets, or squash of some sort would work well too)




DIRECTIONS:

1)Whisk the chickpea flour,rice flour, yogurt,and salt together. Whisk in water until the mixture is thick but pourable, like pancake batter.

2) Set the mixture aside for a few hours or overnight at room temperature until it ferments (the batter will rise and there will be bubbles on top). (I make these after I get the dinner dishes done so they will be ready for lunch the next day).

3) When ready to cook, add finely shredded carrot and the 2 eggs. Mix well.


4)Heat a seasoned skillet over medium heat and add the oil. Pour about 1/4 cup of the batter into the skillet at a time per pancake. Cook until the edges are golden; flip the chilla gently and cook until the other side is browned. (when cooking with chickpea flour make sure it is completely cooked, raw bean flour is not tasty!)


Serve with stew, chili, curry. Really just a very easy side and we have eaten them for breakfast even. We like them topped with coconut yogurt and some green onion. Great snack!

Wednesday, September 3, 2014

Mitochondrial Disease: The Man Made Disease

Everyday I run across yet another article that lists medications, pesticides, herbicides, fungicides as causing Mitochondrial Dysfunction.


Antibiotics

acetaminophen

Metals

Round up (and many other herbicides,pesticides, and fungicides)

Statins(cholesterol drugs)

psychotropic drugs

seizure drugs

vaccines


So we eat food full of pesticides,fungicides, herbicides which leave us vulnerable. Then we take a bunch of medicines that disturb our Mitochondria.


I know I ate a lot of chemicals(western diet) while pregnant. Before I was pregnant. I took antibiotics. I took acetaminophen while pregnant. Thankfully, I did not have the flu vaccine or any other meds. I did not color my hair, or do my nails. But I still used a lot of chemical cleaners in my home. I had vaccines before getting pregnant. I took other medicines before getting pregnant.


As a matter of fact, I am sure my Mom was exposed to chemicals in her food and maybe meds while she was pregnant with me. She had some vaccines before having me. My Dad had severe asthma as a kid and spent a lot of time in the hospital- I am sure he had all sorts of medicines.



Did my Mom's and Dad's gene's take a hit from her/his chemical and medicine exposures? Then I inherited those mutations and created some more of my own as did my husband. Eventually all those epigenetic changes add up and we get sick.

I am not sure if depending on genetics we each have a different "threshold" for damage or if those that are sick have just had more exposure. Either way, each day more and more and more are getting sick. Maybe your kids are still "healthy" but how many more dings to their mito,to their genes and to their microbiome can they tolerate? How many before their children will be sick from the mutations they pass on?


Recently I have been reading about our "microbiome" some researchers suspect our microbiome will be as important to our health and survival as our nDNA or our mtDNA.. We know the term "gut health" or "probiotics" or "leaky gut".. all of those are based on the microbiome. We are big old collections of more bacteria then we can count, and apparently we need them. As we wipe them out with medicines and chemicals we are getting sicker.

We did not have this many sick kids when I was growing up. We did not have this many sick adults when I was growing up. We are going to continue to see the numbers of chronic illnesses skyrocket until we address the "why" instead of focusing on treating the damage we are causing.


We cannot remove everything, believe me I have tried. We can however reduce our risks. We can reduce the risks to the next generation and the generation after that.


I am confident some cases are not preventable even if we lived on an Island with no chemicals, but I suspect for many of us our mitochondria would be functioning much better without all the known toxins that cause dysfunction.


I think Abby's depletion is "man made". I did it, my parents did it, our poor stewardship of our bodies damaged her genetic structure.

I don't blame myself, we did not know. We should have though. Research has been coming out warning again and again about the longterm damage from all our short term solutions. We know now though. I still don't understand that if our Government and other "trusted" sources are reporting this damage why we are not warned?


All I can do at this point is to continue to try to weed out the risks and do what I can as her Mom to protect her Mitochondria.


Not easy, but worth it.

First the food and what goes in the body, then what goes on the body, and then the home.



How many cases of Mitochondrial Disease could have been prevented?


Why aren't we warned about these risks? Especially once a family member has been diagnosed? Wouldn't the rest of the family be at higher risk? If all of these toxins contribute to mitochondrial dysfunction wouldn't it be extremely important to be proactive in removing them from the rest of the family before they too take hits that might add up to permanent damage? Wouldn't it be absolutely key to remove them from Mito Patients to stop further Mitochondrial Dysfunction?


Man Made Mitochondrial Disease, more common then we want to know.

Thursday, August 28, 2014

Snickerdoodle Muffins(gluten free, dairy free, soy and nut free, corn free)

Snickerdoodle Muffin:



These are super easy to make. Remind me a lot of an old fashioned coffeecake. The whole house smells like I have been baking snickerdoodle cookies all day long, definitely an added bonus.


2 cups all purpose gf flour
1 teaspoon guar gum(still using NOW brand but considering a change)
1/2 cup granulated sugar(organic C&H)
3 teaspoons baking powder(homemade Frontier cream of tartar and arm n hammer baking soda)
1/2 teaspoon salt(still using pink himalayan,rocks to grind)
4 Tablespoons grapeseed oil(Tj's)
1 egg
1 cup coconut milk(or rice etc homemade ALL boxed milks are corny )
1 teaspoon vanilla extract(homemade)

Topping:
3/4 cup sugar
allspice,clove,ginger or (Cinnamon if safe for you)

Preheat oven to 400 degrees

1) mix the dry ingredients.(not the topping dry ingredients)


2) mix in the wet ingredients.


3) fill muffin cups 2/3 full.


4)cover the top of each muffin with your sugar/spice mixture(don't hold back, I use a whole teaspoon on top of each)


5)bake 16-18 minutes or until done.


Easy. Tasty. Fast. Like most Gluten free baked goods, these are best hot and fresh out of the oven.

Tuesday, August 26, 2014

Wouldn't you be Pissed if

You found out there was something you could have been doing to make yourself or your child better? Or at least stable? Or prevent it in the first place? Even if there was only the smallest, smallest chance it could help, wouldn't you want to know? YES you would.



Toxins.

Environmental Toxins

Mito Toxic Medicines


You see these terms thrown around in lots of articles and research about Mitochondrial Disease.


But what are they?


Medications- The FDA doesn't require OTC or Prescription medicines to be tested to see if they could be Mito Toxic. Through trial and error there is now a growing and extensive list of medications ALL mitochondrial disease patients should avoid.

Where is that list? Hardly accessible. MitoAction does have a good size list via their website. I appreciate that they at least have it posted.

Even then that list doesn't cover all because we don't know all because no company is required to test for mitochondrial safety. I have run across a few new technologies that can affordably and accurate test medications for safety, there is simply no excuse.


That fistful of pills you take each morning might just be playing russian roulette.



In our Food: Pesticides, fungicides, and more. Round up is currently being used in heavy doses on most of the American crops we eat daily. There is plenty of evidence that it is NOT safe for our mitochondria, yet the FDA recently allowed for an increase in the amount used on our food. Round up is hardly alone though. There are plenty of other chemicals used on our foods that have been listed as dangerous in other Countries. (Your elemental formula is NOT organic and they all include corn derived ingredients. All corn in the USA with the exception of popcorn should be assumed GMO which means the heaviest dose of round up)


I am not even going to go off on a rant about the damage aluminum and mecury and other metal toxins are doing to us in our vaccines,foods, and medications- oh and your pit stick,and shampoos, etc.


I remember our panic when we found out about Abby's Depletion. I wanted to know What can I do to help her??? No Dr. warned me of medicines, No Dr. warned me of non-organics, No Dr. took the time to explain I might be able to do more to help Abby then they and their prescription pad could do. It took me years of reading article after article, of spending hours chatting with other families forced to learn the hard way that I could make a difference simply by educating my family about "environmental toxins".


How about all those vitamins in your Mito Cocktail? They are the front line treatment, the only thing the Dr. can offer. What exactly are those vitamins? Antioxidants. What do antioxidants do for our body? Help remove toxins..

So, wouldn't it make absolute sense then to avoid toxins in the first place? Right?

We want our insurance companies to cover vitamins to counteract the toxins we eat and take. Heck, most vitamins are CORN DERIVED meaning the very vitamin that is supposed to fight the toxins? Is full of it. If I was an insurance company I wouldn't be in any hurry either.


So yeah, I am pissed.

I have been pissed.

I will stay pissed.


My biggest question now that I know about "environmental toxins " is; why do some of us get so sick from "environmental toxins" and others don't?

Does it really matter though when just a trip to the grocery store and changing what you throw in your cart might just help your Mitochondria as much as those Mito Cocktails?


It cannot hurt. If toxins are causing mito dysfunction and we are prescribed "antioxidants" to help eliminate toxins, commonsense says- DON"T EAT TOXINS!


I have found research connecting Tylenol, various antibiotics, cholesterol medicines, pesticides, MSG and more to damage to Mitochondria.

And I am pissed that I had to go look for it. I am pissed that had I known sooner, I could have avoided these toxins in my home, on my table.

So your Mito Specialist knows which medicines to avoid for their Mito patients, but no other Drs have a clue. A patient is responsible to know which medicines are safe and which are not. When that information is not being taught, how do we protect our mitochondria?


Everyone should be pissed.


I wake up every day and look at Abby and wonder " Did I do this to her? " Granted I did not know about Tylenol, MSG, pesticides but I should have..

Instead of brochures on how to donate or run a fundraiser for a Mito Non-Profit, shouldn't they be focused on teaching the patients that there is a way to reduce their risks?


Instead of brochures on how to behave in a Drs. office so you don't have CPS called on you(talk about victimizing the victim) wouldn't you rather a brochure on why organics are a better choice and how they can make your Mito Cocktail more effective?


Instead of Spa weekends to "pamper" Mito Families- how about a trip to the grocery store to teach us how to avoid toxins?


It is simple. Mitochondria and "Environmental Toxins" Don't mix.

What isn't simple however is how to avoid toxins, because no one seems to be in any hurry to tell us what exactly an "Environmental Toxin" is..


Drs, associations , non-profits, don't spend a lot time talking with patients about "environmental toxins". Actually, I don't think I have ever had one encourage the avoidance of pesticides, fungicides, metals. The best you get is to eat a balanced diet rich in veggies and fruits. You might get fussed about sugar(which is hardly an issue if you are packing away toxins by the fistful already) or you might get fussed about salt(which is actually a treatment for dysautonomia) .. Of course they will be quick to point out to maintain a healthy weight and get exercise, but nothing about the "environmental toxins" that can be avoided, the same toxins we need the Mito Cocktail to help counteract..


Will you be cured avoiding toxins? Probably not, but if you stand a chance of not getting worse, isn't that a viable treatment?


Every parent I know is the same as myself. We will do ANYTHING for even the smallest chance to halt a chronic illness in our children or simply prevent it in the first place.


So where is that brochure? Why aren't we told? Why do we stumble across research paper after research paper that surely Drs. and Organizations have seen yet no effort is made to share that critical health information.

Yep- I am pissed.

Friday, August 22, 2014

It Was the Dang Rice...

After a few months of building symptoms, we finally hunted down the guilty party- it was the brown rice.


It still just floors me to think that something like a brown rice that at first was fine has the potential to turn her body into a war zone.


Fatigue,racing heart, muscle and joint pain, GI issues,BP issues, kidney proteinuria, dizzy, wobbly legs,bladder issues(and more!)- all triggered by 1 particular brand of rice. (Her weird rash is still everywhere and not improving, but hopefully a couple weeks her body will balance back out)

Can 1 very small thing like the wrong rice cause her to be that sick, cause anyone to be that sick? Yep. It sure can.


It took me 2 weeks of weeding out ingredients aggressively to hunt it down.. Really it was more gut instinct for both of us.



After reacting to so many foods in such odd ways(mimics symptoms of all sorts of health issues) you start to develop a 6th sense as to which one might be dangerous.



I remember buying the brown rice, not the normal brand(First Warning). When I went to grind it I thought it smelled different(Second Warning) and even though rice depending on brand and the type has different smells(it really does) there was something that caught my attention. That six sense was trying to warn me and I ignored it.

Last time I ground it a couple weeks ago we had finally decided that something was filling her bucket.. but what? As I ground the last of the brown rice I had that creepy crawly feeling that just maybe it was the rice(Third Warning).. and despite years of watching her react to the most insane minimal amounts of contaminates(what a food was grown in, what part of the country it was grown, what they rinsed it with etc) I still found myself doubting that six sense even though through experience I KNOW the smallest most minimal change can cause havoc..it is still impossible at times to believe that she is simply that sensitive. It is easier to believe some new disease process has griped her body then to grasp the concept that a few grains of rice are trying to kill her.


When will we ever learn to stop and listen to our "guts?" That six sense has a terrific track record of being right.


It takes awhile to recover from this much flare for her.. but just after a couple days that yellow color is mostly gone from her skin.. she was cheerful yesterday, reduced pain,scalp clearing(reactions cause her scalp to redden,scale and itch) and as relieved as I that we figured it out. Hoping a couple weeks and the kidneys and everything else in her body that short circuited will calm again.


Reactions: Any symptom that mimic's zillions of disorders. Anything, I mean anything from the direction the wind blows to where the rice was grown and how it was packaged can set off and dangerous cascade of symptoms.


Relieved, very relieved. But I cannot help but wonder, how long will it take before we start listening more to that six sense then to what so many Drs. have decided is possible or impossible?

 
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