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.

Saturday, March 31, 2012

The ups and downs..



A few Drs. appointments back, when asked how Abby was doing my hubby replied- "a lot like the stock market, lots of ups and downs, and tons of uncertainties."


I have yet to have found anything that fits better then his analogy. Mito rules the "energy market" for Abby.

Abby and I were watching the local news yesterday and saw that the German Fest is in Tomball TX this weekend- it sure looks like fun! It is also free to wander and we are very tempted to go. Looks like it is on paved ground which would make navigating a wheelchair much easier. Based on what we saw on the news it doesn't look very shaded.. we aren't familiar with the location as to whether it gets a nice cross breeze or not...

Abby also shared there is a Japanese fest in Town somewhere this weekend.. these are the type of activities we adore.


Now to figure out if we can. It is supposed to be almost 90 today and tomorrow. This far exceeds what Abby can tolerate. The mosquito's are especially vicious and since allergy meds seem to upset her delicate balance right now she would have deal with the reactions..itchy welts would interfere with her sleep and that little bit of extra aggravation has tipped the cart in the past..

She had an iffy week with tons of tiny ups and downs..her tummy is holding. Her face which is the quickest way to gauge her looks pretty good this morning. Would an hour of the German Fest be worth a week or two of potential(and likely)misery?


Odds are, probably won't, Abby doesn't want to go badly enough to pay the piper for over doing it,over heating, exposure to a huge array of allergens.. Despite the constant little ups and downs all week, she is at a holding spot- not great, but we have seen much worse weeks.

We let her play her own energy stocks- sometimes she can read into the future just enough to know where to play her energy, sometimes she takes a loss, sometimes she gains..

You never know, she might say- Lets do it! If not, we have plenty of errands and chores. We don't go to these fun things unless she feels well enough to be with us. Even going to the farmers market to do grocery shopping seemed less joyful without her with us. None of us enjoy much without her with us. I think it almost makes those times when she is in a gambling mood, all the more delightful! There are lots of things we do without Abby and she has never complained.. but, where with most teens that get left behind because they really have no interest in hanging with their family, Abby's held back by her finicky body.

Back up plan- The movies! That is something that is always worth a few spoons! Plus, we can get her close to the door without having to use a chair,perfect climate control-reduced risk for sure! We read the Hunger Games books(Which were terrific!)I think we might like to see the movie.

There are warm Texas days where I really wish we could live half our year in the North and half in the South- I see being snowbirds in our future!

Friday, March 30, 2012

CDC- 1 in 88 have Autism







Less then 1 out of 100 women will get pregnant if they take their birth control properly.

1 in 88 Women will develop Leukemia in their lifetime,of those who get Leukemia 1 in 141 patients will lose the battle.

1 in 100 Americans in jail(2008 via the New York Times)

7 out of 100 women will have breast cancer by the age of 70.

1 in 6 people in the UK now live to 100.

5 out 100 Americans will get HBV without vaccine-In 2006, 4,713 cases of hepatitis B were reported to the CDC and 8% of these cases died from their infection.

1 out 100 globally, will develop schizophrenia.

1.5 out of 100 will stay flu free with flu vaccine-(2011 The Lancet) Without the flu vaccine, 2.7 out of 100 will get a strain of the flu.

1 out 7 with hearing impairment will not seek medical care.

1.5 out 100 will develop Alzheimer's

1 in 4 Americans are not saving for retirement

1 out of 32 Americans are under correctional(parole)supervision.

1 in 4 AMERICAN Children do not get enough to eat everyday....

1 out 6 American women are the victims of either attempted or completed rape.

1 in every 10 Americans take an antidepressant.

1 in 100 make plans to commit suicide..



Yesterday the CDC said 1 out 88 have Autism. The claim is they feel that is as high as the number will go, while many other specialist in the field feel those numbers will rise next year.

Thursday, March 29, 2012

More Project Elimination






Abby was having an okay day yesterday. Not great, but not bad.. the sleep a thon is past I think.

Since the only area in her health that I can make a difference in is what she eats and her environment, those two area's that I have focused the majority of my energy on.

For years I was the "Allergy Mom!" She was deprived of cute fluffy stuffed animals on her bed, the only curtains were ones that could be yanked down and washed in hot water, all cotton bedding, no books, no girl junk littering her room... but somewhere around age 10-12 when she started feeling bad despite my war on dust mites I declared defeat- and let her start squirreling away tons of girl junk...I was having more issues with my back and cleaning and vacuuming her room daily dropped off my priority list. To my shame I have the ability now to walk past her room without seeing a thing wrong! For her it was freedom at last!

At this point the sheer mass of fluffy items so frivolously piled all over her bed, make it a serious chore to change her bedding weekly, It takes two hands to close her closet door- one to hold back the clearly replicating clothes while the other slams it shut quickly... Everyone groans when we help put her clothes in her dresser- I swear her sock drawer is very similar to a pressure cooker and one day I am going to open it and socks are going to go flying! Literally, there are shoe boxes stacked floor to ceiling in her closet, I don't think even she knows which shoes she owns!

Oh and the clutter... little pretties from Derek's travels around the world(scorpion paperweight?)favorite stuffed critters, little kitty figurines my Mom sent her before she passed away. College books, wrappers from packages that came from Korea, Poland, - admittedly the wrapping is unique, but do we really need to save it? Oh and stacks of DVD's,(We have dvd storage books,but somehow they rarely get put in there)and the jewelry- Abby rarely wears it, but the piles of tangled jems and pretties indicate a jewelry addict lives in there! Surely, you get the point- it has become an almost unimaginable hoard of everything a teen girl could covet! :-)


Here is where I have to admit that it wasn't just my back that has kept me out of sorting her room these past few years.. I grew up in a home where my Mom was a cleaning fanatic...that was bad enough, but my Step Mom used my bedroom for a guest room, so it had to be kept as she wanted my room.. no Duran Duran posters, no frilly pink covers, no teen magazines scattering the floor.. it just never felt like it was "mine" I was SOOOOO jealous of my friends rooms where we literally fished for clothes off the floor, where the ceilings were covered with magazine cutouts and the silly little glow in the dark stars- it seemed so personal, it made the room theirs. So, the condition or lack of organization and clutter in my girls rooms is my way of letting them have their own space, used in a way that makes them feel at "home". For years I too was the cleaning fanatic.. I cleaned base boards at least 1x a week.. my toilets and bathrooms were wiped down daily.. I am not sure exactly when I surrendered but, if you catch me off guard you will find some dust in my house, and heaven save anyone when they open a designated junk drawer..


There has to be a balance... vacuuming once a week is perfectly okay. Leaving a project scattered across the kitchen table for a week isn't hurting a thing.. but now I know why perhaps my family was so particular.. like gremlins girl junk(including mine)seems to multiple without any effort! We have hit mass capacity!

Abby and I went through 2 drawers yesterday. She can sit comfortably in bed and make all the decisions, and I get to ferret through the tangles of fabric and fold, and sort and remove. I see her room in my mind with strategically placed girl clutter, tidy and tightly made bed, and as I sort those clothes and beat and force them into order, I secretly smile to myself that I might be just a little sad to see too much perfection.

Will her closet ever be organized in a way that makes sense to me?(I am color coordinated- if I hang a black item in the wrong color zone it can interfere with my sleep- but my shoes are thrown and piled joyously all over the floor!) no, and it shouldn't make sense to me, but to her.

If I can just dust and vacuum weekly without preparing myself for 4 hours of moving items- I think we have come to a nice compromise!

Today as I drink my coffee I think I might be ready to war with the sock drawer.. I am trying to decide if there will be more unmatched then matched in there.. and if any of the socks still hiding in there may date back to elementary school- and I am smiling.

Wednesday, March 28, 2012

Q and A Time!






Q) Do you like Starbucks?


A)Nope- think it is a waste of money and packed with empty calories and really doesn't taste good- I am happy with Maxwell House.


Q) Do you like ChicK -Fil- a?

A)Nope- over priced, not open on Sunday, and now contains MSG. If there wasn't MSG I would buy it once in awhile, Abby loves chicken.

Q) Do you know people who eat and drink at those places?

A)Yep- and I love um! :-)


Q) What are your all time favorite quotes?

A) "It is what it is" "God feeds the needy, not the Greedy" "Be kind, everyone you meet is fighting a tough battle too" and finally,
"I think, therefore I am dangerous"


Q)Why do you write this blog?

A) Because when I started reading blogs about Mito, I could not find any who wrote about the dark side (lack of care)to medical care in Houston(and other cities)


Q) Do your really think that Houston has a CPS problem?

A) I don't have any facts that can prove we don't, and I don't have any facts that prove we do. All I have is a lot of families who are scared because of what they have heard and some who have seen- the best way to eliminate that fear is to validate and prove there is or isn't an issue. After 15 years of KNOWING Abby had health issues and no one believed us,or were willing to help if they did acknowledge, I tend to listen and validate how people feel- If there are a lot of people feeling worried or scared, we need to know why, and we need to eliminate it. Just telling folks "don't worry" isn't going to make those feelings go away. Open communication and facts are the only thing that will air out these type of problems.

Q)Do you think Houston is terrible for Medical care?

A)No, I think that we don't have any options in care for Mito. That is a problem. I think if you have cancer or heart disease you are lucky to be in Houston- topnotch care for you! For as many families being served well with Mito, there are as many families who are not. To be clear, if you are being served well- I am thrilled, and maybe a little jealous :-) We need more Drs. who are passionate about Mito. Just reading online it is clear that Mito Drs. are just like every other speciality- Each one develops their own methods, they focus on certain types of Mito, they feel most comfortable with certain types of patients and there is nothing wrong with that, but Houston is full of very different types of Mito - and being the 4th largest city, with medical schools out the wahzoo, a ton of research, and a stunning and amazing medcenter I feel very frustrated that we are so limited for Mito care. Until ALL Mito families have access to good care, I won't be happy.

Q) Is Abby getting "good"care?

A) Better then we have in years- but we fly to Atlanta. We have found some great local specialists, but the Drs. that work best for Abby are the ones outside of the Mito world in Houston.

Q)What does Abby and the rest of the family think about your blog?

A)Abby reads my blog posts daily, and often makes suggestions of what I should cover. I keep asking her if she will make a post for me to share from her, eventually I will corner her on it. My family is pleased that I am willing to share our perspective on this journey- if even one family feels less alienated by the culture here, then my whole family is happy I have shared.

Q)Are you this opinionated about everything?

A) Probably. I think Public Schools are failing, but my dearest friends love their Public school, I think our government is headed in the wrong direction, but some of my family and friends disagree with me(and we debate!), and still like me! I feel very lucky everyday that I am surrounded by very open minded family and friends. We all think that the world would be stagnant without problems to solve. Which means we would all be sitting around still thinking the world is flat! :-)

Q) So what is up with this organic,raw craze you are currently in?

A) I am open minded,or try to be..just because someone else says it won't work, isn't enough reason for me not to try it. Medications don't usually help Abby, they usually hurt her(the rest of us live for motrin though!). I have read enough to know that some folks are getting a little relief by eliminating hormones,chemicals and since we have not tried it(at least to this level, over the years we have eliminated a lot ), I could not ignore it. Raw is safer then letting your kids jump on a trampoline.. which makes it a lot safer then a lot of the medications- why not give it a try? If it works, will I go into granola, earthy girl mode? No. I hate recycling. I like vinyl sandals. I like using paper plates. However, I will hunt down other foods that Abby can eat. If Abby could only eat twinkies- then I would fill the house to the rafters. If it works, it works. My only motivation in my current exploration of raw and completely natural is to see if it will make Abby feel even a tiny bit better. I don't see myself ever joining Green Peace- though I don't believe in saying NEver- but if for some odd quirky reason our journey took me that far, it would because it would benefit Abby.

Monday, March 26, 2012

Yummy Tummy Spread

My creation.




Yummy Tummy Spread


Fresh local honey(wild flower, no GMO crop exposure)(a teaspoon a day is the nicest hay fever treatment)
Fresh Ginger(organic,for tummy upset)

Goat Kefir Cheese(very easy, start with raw goat Kefir,strain with cheese cloth in fridge for 48 hours, like a very tangy cream cheese)(Goat is easier then dairy to digest,but very strong flavor, ideally, I think my family will prefer either coconut kefir(won't thicken as well)or (Dairy kefir cheese) The raw kefir is packed with tons of good bacteria(probiotics)Any of the commercial products with probiotics or natural cultures are very very limited in how many the variety of bacteria compared to raw.. Plus, they remove all the of the naturally occurring first(pasteurization)and then select a few select probiotics(bacteria) to throw back in- helpful but far from ideal.

a few sprinkles of cinnamon and nutmeg(spicy to help family ignore goat flavor till they are used to it.)

Whip it all together and store in Non Metal container(fermented foods will damage metal)


Spread a Tablespoon(perhaps more or less kefir down the road once I know she won't have any ill effects) a day on a nice piece of gluten free toast- The elimination experiment can now begin.


honey for hay fever, ginger for upset tummy, and kefir probiotics to reset the bowels and eliminate constipation.

Not sure if it will work, but sure will be a tasty experiment!

UPDATE-UPDATE~ first "serving" went exceptionally well! Said that she did not taste the goat at all, and if anything, I may have added too much honey! 2 hours later, no sign of allergy or tummy upset(bad couple GI pain days, but she said it made it no worse then it was)

Now, if she can handle it for 2 weeks that is the true test. She tends to react over a few day period at times if no instant reaction.

We are already dreaming about all the different spreads- maybe a smoked salmon/kefir cream/ dill spread? Or a "ranch" spread? Options are endless!

Hospital and Dr. Rating systems. They are Worthless.

I have been able to book appts with two different Dr.s that were ranked very high by their peers(Best Doctors lists). We saw each of them once and though they were nice, they weren't what I thought "Best" should be.. Turns out, a lot of those rankings and lists, well they are mostly based on peer recommendations, not patient feedback...

Clearly, I have a much different view of what makes a Top Dr, then a Dr.


Apparently, Best Hospital lists are often generated in the same way. The more employees that fill out the survey with positive feedback the higher the rank.

I appreciate that other Drs. have qualifications that I don't in judging whether a Dr. is good or not, but whether a patient thinks a Dr. is good or not is going to influence their reputation. I would much rather hear from patients.

US News list is the one most easily found. A couple of Houston hospitals consistently make the Top 10 using the US News criteria(based on Drs,nurses,and survival)

The very first thing I noticed is that they use this criteria- Reputation with Specialists, Nursing Staff, and Survival. Where is the patient input? How many Children's hospitals are in the area to chose from?(larger the metro and fewer the pediatric speciality hospitals the easier it is to rank higher) How many patients did they see? Were the patients all referred? Were they Public or Private? What was the waiting time to be seen? How many of the patients they saw were they able/willing to treat or diagnosis? These are factors that are as important. Granted, I feel strongly that a happy and quality nurse can make or break their Dr- I cannot tell you how many Drs. I have abandoned because their Nurses were horrible. And, of course I want specialists who know about medicine to rank- and kind of obvious that survival is important- but what about all of us patients? Are we just a slab of bacon?

So I found this link next which is based on 12 years of Medicare Data- the list was generated by Health Grades. Texas did not even make the top 10.


Humm- that is a significant difference so I decided to find another ranking and found this article from the Los Angeles Times: here is a little snip that pretty much sums it up-

The findings surprised Sehgal. ("I nearly fell out of my seat," he says.) According to his analysis, reputation dominated the rankings, especially near the top of the list. The study found that if the top 20 hospitals in 12 categories had been ranked on reputation alone, the results would have been about 90% the same as the actual rankings. (The study didn't include the four specialties already ranked solely on reputation.)

And when Sehgal compared reputation scores with the other factors used by the magazine — such as death rates, technological resources and nurse-to-patient ratios — he found that those reputations didn't necessarily reflect reality. "There was virtually no relationship between reputation and objective measures of quality," Sehgal says.


So as patients who do we trust? IS there a list that considers patient rankings as seriously as they do other Drs.? Not one even close to the popularity of US News or Consumer Reports. As I stumbled through my googling I found some patient based lists but most were way too small, or were old, or were just patient ratings, which is as about as pointless as just Dr. Ratings.


I continued to try different search terms and found this ranking system via ModernHealthcare.com. It broke down the ratings by profit, or busiest ER departments.. So I thought, Yes this list and ranking might be helpful. I went to the Busiest ER ranking- to my disappointment they want me to pay 45.00 to see their rankings. So again, I the consumer- the patient feel very much like my input has no value beyond a survival rate as a slab of meat.

The last one I took the time to read this morning was from Medscape. It was an interview with a University of Pennsylvania School of Medicine. He was far more articulate then I was here, but he too questioned the value of these Top Hospital and Drs. lists. My favorite snip from his interview-


At the end of the day, what would be helpful for physicians and patients to know would be where patients do better, and which types of patients do better at which institutions, because I suspect that it varies tremendously. What specific area of expertise might a particular institution have? Much of what we do as nephrologists is take care of dialysis patients in and out of the hospital. Perhaps that is a measure by which hospitals should be ranked rather than nurse staffing ratios, patient volumes, and things that may or may not translate into better outcomes for patients.


I understand that "emotions and feelings" are hardly easy to rank. But, wouldn't even knowing a ranking based by Patient recommendations to recommend the hospital or Dr. to another patient be very helpful to the patient? But, then we aren't the Dr., The Nurse, The investor, The City Marketing community, The Medical School.. to them a ranking based on patients isn't nearly as important as their "peers."

Sunday, March 25, 2012

Unplanned Trip to Holland: You're Kinda New at This, Aren't You?

Unplanned Trip to Holland: You're Kinda New at This, Aren't You?

Okay- read this blog this morning and HAD to link-

How true- she perfectly describes what any of us with chronic illnesses deal with, and exactly what send me into a big rant of how despite some Drs. thinking the medical world is perfect, or denying that there are some serious issues at foot in Houston- this is what families deal with day in and day out.

I try very hard to put myself in the Drs. shoes- but I get really sick and tired of them not recognizing or trying to put themselves in our shoes.


No family should deal with this type of attitude and mentality- yet most of us do- frequently enough that this rings so true!


These are the type of Blogs we need more of!

The alternate.


(Kefir "grains" in picture)


We have started "Project Elimination."


Yesterday we drove to Gramen Farms. No chemicals,no hormones, no corn feed.. Food clean and pure the way it is meant to be. They are one of the leading farms in the Greater Houston area and have sterling credentials. They also encourage folks to drive out to the farm, see what and how things are kept, and if I had little children I would bring them to visit with the very friendly farm animals.


Did you know that some honey bee keepers are actually putting out vats of corn syrup for their bees? To amplify their honey! So Wrong! The vast majority of corn products are made from GMO corn, which is KILLING off our honey bee's- I keep thinking, what are we doing eating corn in everything if this corn is killing the honey bee's that it needs to produce? It cannot be ideal.

Thankfully, he has a very very particular bee keeper who even "hides" her hives from any crops- true wild Texas honey. One of the worlds most pleasant treatments for Hay Fever- a teaspoon of fresh local honey each day!

Feta cheese- holy smokes- you just have not eaten good feta until you have had it from fresh raw goat's milk..

Dairy- always a HUGE controversial topic- is Raw un pasteurized milk safe? A heck of a lot safer then what most of America eats at McD's!!!

Quick fact- Did you know that by the time your gallon of pasteurized 2 percent milk makes it to the grocery store, the dairy farmer has made 51.00 on the gallon????? Also, that "organic" milk you are buying? You might want to read more about it, it is not organic in the way I would want it to be- and it is pasteurized and all the natural live cultures it started with are gone-odds are you might as well by the store brand. Many of the commercial yogurts and dairy first sterilize the product which kills the natural probiotics- then they add probiotics they have raised- not saying that is bad, but I would rather have the ones that are supposed to be with the food, not ones that have been chemically selected.

In raw milk it is the full package. The milk holds all the bacteria to help you digest it. In Pasteurized milk before it gets to the grocery store the dairy farm has taken all of those "GOOD" bacteria out of the milk- there is evidence that shows that when they started taking all the "good" stuff out of the milk to make sour cream,cream cheese,butter and finally pasteurizing we witnessed a HUGE spike of people that are dairy allergic or sensitive or lactose intolerant.

Does this mean that Abby can digest it? No. But worth a try down the road- with tiny baby steps.

Kefir- Worlds best dose of probiotics in a drink of raw,fresh kefir(cannot buy kefir out of raw milk at the grocery,so they add processed probiotics and not nearly as many or variety you get in raw). My hubby loves the stuff! We bought both goat and dairy to taste the differences, goat is similar to dairy protein wise, but has smaller particles and is generally slightly easier to digest. It is also a natural cure to chronic constipation. A swig of tasty natural kefir seems so much more "normal" then a glass of Miralax with all its chemicals.. again,, I am not sure this is going to be what works, she may need to stick with the miralax, but isn't it worth a shot? Eating to be healthy instead of lining up glasses and pills of chemicals?

Free range chickens- no additional feed- they only eat what they find in the fields(which are free of fertilizers,chemicals,insecticides). No hormones, no medications, no antibiotics and best yet, no corn feed! Since Abby relies on chicken and fish for her protein intake, this is a must for us- We can find "organic" in the store, but what the government deem's organic is very different then truly natural and safe.

Beef- we brought home beef that had been butchered at the farm that very morning. Beef that had no additives or treatments..that had been raised in fresh and natural fields.. Odds are that Cow had eaten far better and more naturally then my years of hamburgers and pizza's! Oh and the smell of fresh meat is so different and so much more appealing..low fat naturally.. the smell took me back to the smell of a rib roast when I was a kid-before they started mutating the beef with chemicals..The difference is like buying a tomato in December or a commercially raised tomato vs a tomato raised in your home garden- the hot house tomato is so watered down, void of a vigorous flavor, but the home garden tomato is packed with flavor. One of my favorite things is in the morning where the tomato plants are still a little dewy but the sun is warming the cherry tomatoes on the bush and you can smell the tomato plant before you get to it- each sun warmed tomato is packed full of flavor.. that is the same difference between natural grass fed beef and GMO corn fattened beef..

So, some of you are probably sitting back saying, WOW she finally fell off her rocker for real!

But, so far any medication causes more harm then good for Abby. The only "evidence" we have with Abby is that if she gets MSG her protein loss doubles, she feels weaker, more fatigue.. same with all of the preservatives.. If she gets corn product no matter how broken down, her GI issues flare.. So, for Abby right now, wouldn't we go out of our way to eliminate anything that doesn't come fresh and natural as it should? At least if we go truly natural(not commercial definition of "natural") We will know exactly what causes a reaction, which will make it safer and easier to figure out what is causing reactions. One ingredient food provides us simplicity. Store bought milk,beef,chicken is not 1 ingredient- you have to include antibiotics,hormones,pesticides,sodium injections to make it pretty, etc..

I gotta say, when I had to go online to read the ingredients in the ELecare(because they don't put it on the label) it was depressing- a big long list of processed and chemically bathed and twisted particles..no wonder she started having problems with it..and no way for me to tease the ingredients apart to figure out which one is aggravating her.

To be clear, this in not a cure. But, it is the safest and most natural way for us to figure out what is safe for her body and what is not.

We had tried the "marrow bone soup" for Abby, and it did not agree- but, we think it had too much fat because she ate too much to tolerate. So, we will scale back and see if a tiny bit at a time is acceptable. If anything, we will find out whether she is truly having an issue with "fats" or with "proteins" or allergies. It will be so nice to have her foods more clearly defined.

This is not going to be an all or nothing practice for us. But, I am going to start buying local produce(A couple CSA'a and local growers that are certified organic practices, you can even get weekly home delivery!). Buying local will be good for local businesses, and helpful for us to figure out if it a reaction to the food itself, or to the chemicals commercial farmers use.

I will still be at HEB buying what I cannot find natural and local- if someone in my house wants kraft grated cheese(and my secret addiction to Diet Rite(abby gets martinelli apple juice and thankfully is not a huge soda drinker )- they can feel free :-)If they want their skinny white bread they can have it-though I will offer a more natural option. But, my goal is to reduce the chemicals coming into my home and our bodies, to increase the probiotic value in our food, to add more fresh and chemical free vitamins through our food.. If we see any improvements with Abby we will push a little harder- but, we need balance around here. I happen to really like my smart one's frozen dinners- and the lengthy list of of unnatural ingredients should make me run from it.. but we are going to try just being more natural and common sense.. a little bit at a time.


Oh and FYI for anyone freaking out right now thinking raw milk is illegal- it is NOT illegal. In the state of Texas they actually go through some serious scrutiny to be allowed to sell it. They are NOT allowed to sell it anywhere but at the farm where it was produced. But it is perfectly legal.

Also, it isn't cheap. Mystery pink slime burger is way cheaper- but to know the cow was healthy and natural and no chemicals that Abby reacts to were used- well for my family that makes it worth the cost.

If I get even a better flavor from this experiment it will be worth it! And it will be much easier to avoid preservatives for Abby, which makes her feel much better.

This might be a "stage" and if we get no benefit I may be grabbing some yoplait in a few weeks :-) But, a fun and tasty adventure, and who knows, might make us all feel just a little healthier!

Saturday, March 24, 2012

PQQ? As important as CoQ10??

So my favorite little bird sent me a new supplement to google with coffee- PQQ

So, I started at my beloved Wikipedia!


Of interest: Supplementation benefits

PQQ is taken as a dietary supplement to support mitochondrial health and cellular energy production, and to protect the body from oxidative stress. Most notably, PQQ stimulates the spontaneous growth of new mitochondria in aging cells, and activates genes that govern mitochondrial reproduction, protection, and repair.
[edit]Antioxidant capacity and role in mitochondrial health
Mitochondria are the primary engines of almost all bioenergy production in the human body and are among the most vulnerable physiological structures to destruction from oxidative damage. Scientists now recognize mitochondrial dysfunction as a key biomarker of aging.[13] [14][15][16][17][18]Relative to cellular DNA, mitochondrial DNA possesses few defenses against free radical damage, and is dependent upon antioxidants for protection. [19][20]PQQ’s powerful free radical–scavenging capacity provides the mitochondria with superior antioxidant protection due to its high molecular stability and the role it plays in energy transfer directly within the mitochondria. Unlike other antioxidants, the exceptional molecular stability of PQQ allows it to carry out thousands of electron transfers without undergoing molecular breakdown [21]
PQQ is especially effective in neutralizing superoxide and hydroxyl radicals,[22][23] two prominent causes of mitochondrial dysfunction.
According to a University of California at Davis study, “PQQ is 30 to 5,000 times more efficient in sustaining redox cycling (mitochondrial energy production) . . . than other common [antioxidant compounds], e.g. Ascorbic Acid (Vitamin C).”[24]
[edit]

So next up I headed to do a Google "scholar" search. First thing I noted was that there was a lot of research during the 80's and 90's..and then it slowed down and picked up again in 2005- which makes sense since the study of Mitochondria expanded considerably in the past 10 years and anything that might influence mitochondria would be of interest.

Like usual, many of the articles I would have liked to have read were locked and would have cost me 30 bucks :-( But, did find THIS one-

Here is the Abstract:

Abstract(2008)
The effects of pyrroloquinoline quinone (PQQ) and coenzyme Q10 (Co Q10), either alone or together, on the learning ability and memory function of rats were investigated. Rats fed a PQQ-supplemented diet showed better learning ability than rats fed a CoQ10-supplemented diet at the early stage of the Morris water maze test. The combination of both compounds resulted in no significant improvement in the learning ability compared with the supplementation of PQQ alone. At the late stage of the test, rats fed PQQ-, CoQ10- and PQQ + CoQ10-supplemented diets showed similar improved learning abilities. When all the groups were subjected to hyperoxia as oxidative stress for 48 h, rats fed the PQQ- and CoQ10 supplemented diets showed better memory function than the control rats. The concurrent diet markedly improved the memory deficit of the rats caused by oxidative stress. Although the vitamin E-deficient rats fed PQQ or CoQ10 improved their learning function even when subjected to hyperoxia, their memory function was maintained by PQQ rather than by CoQ10 after the stress. These results suggest that PQQ is potentially effective for preventing neurodegeneration caused by oxidative stress, and that its effect is independent of either antioxidant’s interaction with vitamin E.
Keywords: cognitive deficit, oxidative stress, pyrroloquinoline quinone, coenzyme Q10
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So this supplement has my interest and attention.. Since Abby struggles with any supplement by mouth, either GI upset or odd reactions I figured it might help to get a list of food where this PQQ is found in higher levels-

This LINK was the first I found that had a food chart :


Then I found this NIH PDF with another chart pretty much the same, but nice to know that the original chart I found was accurate, and most interesting to me was this research was posted in -1995 which was the year Abby was born..


Broad bean
Green soybeans
Potato
Sweet potato
Parsley
Cabbage
Carrot
Celery
Green pepper
Spinach
Tomato
Apple
Banana
Kiwi fruit
Orange
Papaya
Green tea
Oolong (tea)
Coke
Whiskey
Wine
Sake
Bread
Fermented soybeans (natto)
Miso (bean paste)
Tofu (bean curd)


These are foods that I have always and regularly prepared for meals around here. Abby out of all of us has always eaten the fewest of them because of her allergies/sensitivities. (Minus the Whiskey and WINE and Sake!!! LOL)

Very interesting information. What I wonder is, if PQQ was known even the 80's by government and private research as a "key" supplement, why am I just learning about it now?

Friday, March 23, 2012

The Sleep a thon!

Abby really had a couple of great days this week- you can just see it in her face. Rosy cheeks, no circles around her eyes, she just is so centered on the good days. I had offered to run her out and about, but she said" you know, it is kind of nice to sit and just enjoy not being miserable".. Talk about enjoying the small things Huh?


Yesterday started the sleep a thon- 2 days of lots and lots of sleeping(18 hours a day), but it is a good type of sleep- she says it feels restorative.

Going to get her out in the sunshine this weekend.. she can Manage us mulching the yard or we can hit the outlets- then we will let her back to her sleep a thon :-)


Food issues- still hurts. Still staying low to no fat. A couple days without the elemental formula and no weight loss- so we are pleased. She tried a few bites of red beans- which were painful, but not too much more so then what the easiest foods are... We will do fish this weekend and try some veggies- I know she misses artichokes, but thinking something with less fiber.. and since white fish seems to be the easiest food for her she can handle to try to re introduce some foods she has struggled with.. worse case, we back off.. but if she is going to hurt no matter what she eats, we might as well make those bites count. She is feeling very hopeful and strong- The Dr. believes, so Abby believes. I think like any type of chronic pain, sometimes mind over matter can be the most useful tool. Usually it is harder, and takes more time and effort- but it is always the best choice and the first.


A good Dr. is worth their weight in Gold!

This good space gives me more time to reflect on the good around here and around me- I need to remember how very very lucky I am. A tremendous family and equally amazing and unique friends.

I am thankful today that Abby is mild enough that we have been given the opportunity to seek out answers to the million questions this diagnosis brings. I am thankful for Dr.s who think outside of the box, who practice medicine in a way that is individual to the patient. I am thankful for my friends who share their many views and differences with me and make my world richer.

I tease frequently that if I threw a party and invited everyone I knew, it would be the worst party ever! I think I love my friends who are the strongest, most passionate, and most opened minded above all else! From raising sled dogs, to Cheer moms, to my green friends, and gasp even my Liberal friends- I thank all of you for being you- for not just being who you think everyone wants you to be!


Thursday, March 22, 2012

Score: Horses ZERO Zebras ONE!




Well- our wonderful GI and his PA had to break it to us that they found ZERO horses. Back to that 1 big zebra.

Best guess it is autonomic related. We still have the HIDA scan and the possibility it is some sort of chronic pancreatitis(Abby's guess)but no easy way to treat or define.


Positives- we ruled out a lot of horses all at one time- which is a huge relief.
Negatives- our particular pet Zebra is not one that can be cured or even treated well. :-)


So now what? Well, Abby gets to live with yet another fun(NOT)side effect of this "depletion" junk.


The good thing is that she has learned to deal with a new level of pain, she has learned the pain won't kill her and I think she just accepts that food is painful for now..possibly for a long time. I am terribly proud of her. She knows it is in her best interest to keep eating and moving and on the worst of her days she gives it her all.

The other good thing, we really are anti feeding tube at this age. If Abby were 2 and we could not explain that the pain is just something she has deal with, then I think I would be lining her up for a tube. But, she is plenty old enough, and plenty tough enough to deal with it. People have all sorts of health issues where they just have to suck it up sometimes- this is one of them. Is it fair that food is now a painful necessity instead of a joy,pleasure, social interaction? Nope. But, no guarantee's a feeding tube would get rid of the pain, or discomfort or mal absorption and certainly a tube is a negative on the social front(though it should not be) so she might as well enjoy tasting it :-) It could get worse, and if it gets to the point that she becomes so thin or she says she has had enough- we will work from there. Abby is from tough stock- I bet she will overcome this little hiccup with good grace like she has done with every other obstacle.

Back to learning about our food, focusing on making each bite as nutritious as possible. Time for some dust/allergen elimination around here... It seems with Abby it is always the "straw that broke the camel's back". She has been having more problems with the Elecare lately, so thinking the whole liquid supplement maybe be causing more harm then good-we will trial a week without. If we can eliminate even a few of those "straws" maybe she can find some balance amongst the Zebra's.

Article-Baylor, Arup Turn to Next-Gen Sequencing to Address Challenges of Mitochondrial Disease Diagnosis

A cut and copy kind of Morning! Here is the link for the article below.


» News » Clinical Sequencing News
Baylor, Arup Turn to Next-Gen Sequencing to Address Challenges of Mitochondrial Disease Diagnosis
March 21, 2012

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By Bernadette Toner

Mitochondrial disorders are among the most difficult diseases to diagnose accurately due to their complex genetic underpinnings and wide range of clinical phenotypes, but a number of labs have recently turned to next-gen sequencing to assist physicians in reaching a molecular diagnosis.

In the past few months, both Arup Laboratories and Baylor College of Medicine's Medical Genetics Laboratories launched new NGS-based tests for mitochondrial disorders. The two labs join a number of academic and commercial labs, including GeneDx and Transgenomic, that offer targeted panels or exome-based tests to detect mutations in the 37 genes present in mitochondria, nuclear genes that encode mitochondrial proteins, or both.

Baylor and Arup's new offerings differ slightly. Arup has launched a broad mitochondrial disorder panel that sequences the entire 16.5-kilobase mitochondrial genome and 108 nuclear genes. It has also developed a comparative genomic hybridization array to detect large duplications and deletions in the 37 mitochondrial and 108 nuclear genes.

The Mitochondrial Diagnostic Laboratory within Baylor's MGL, meantime, has expanded upon a mitochondrial genome sequencing service that it launched last year with a handful of targeted panels that focus on specific pathways involved in mitochondrial disease.

A Focused Approach

Earlier this month, Baylor launched a line of "MitomeNGS" panels related to mitochondrial disease and metabolic disorders: a nine-gene panel for muscle-related glycogen storage disorders; a 10-gene panel for liver-related glycogen storage disorders; a 14-gene mitochondrial depletion and integrity panel; a 25-gene panel for mitochondrial or metabolic myopathy/rhabdomyosis; a six-gene panel for progressive external ophthalmoplegia; and a four-gene panel for cholestasis.

Six additional MitomeNGS panels are in development and are slated for launch in June or July.

The lab uses custom NimbleGen sequence capture for target enrichment and performs all sequencing on the Illumina HiSeq. In validation studies, all panels achieved 100 percent sensitivity and specificity compared to Sanger sequencing.

Victor Zhang, assistant director of Baylor's Mitochondrial Diagnostic Laboratory, told Clinical Sequencing News that the panels are intended to complement the lab's existing tests. "We're trying to offer a wide spectrum of testing — from single genes for common mutations to panel testing to exome sequencing."

The new panels are designed for physicians who have been able to narrow down their diagnosis to a small subset of potential mitochondrial diseases based on phenotype, but still need help with a molecular diagnosis.

In such cases, single-gene testing would not provide enough information, but broader approaches such as whole-exome sequencing would be overkill.

"There are distinct phenotypes related to the particular genes in these panels," Zhang said. For example, if a patient presents with exercise intolerance, a physician might want to run the metabolic myopathy panel, which contains genes related to that phenotype. "Otherwise, for liver disease, they wouldn't consider those genes in the metabolic panel."

Cost is another factor. "Most clinicians are conscious about cost and try their best to order the most relevant test possible for their patients," Zhang said. "While large gene panels are useful, and exomes are useful as well, if a physician is able to narrow it down to what kind of subgroup, or what pathway it's going to be, it's more cost effective at this point to do that rather than going to broad exome sequencing."

Pricing for the tests will vary based on the client's needs so Zhang could not provide specifics, but he noted that the lab determined that a small panel such as the cholestasis test will save at least $2,000 when compared to ordering the four Sanger sequencing genes individually, while a larger panel like the metabolic myopathy test will save at least $25,000 when compared to ordering the 25 genes individually by Sanger sequencing.

As the lab expands its testing menu for mitochondrial disorders, it recognizes that the range of available options might pose a challenge to some physicians. With this in mind, it has developed a clinical testing algorithm for mitochondrial disorders that serves as a "cheat sheet" for physicians to determine the most appropriate course of testing.

"We understand the complexity of all this, so we're trying to make it easy," Zhang said. "We acknowledge that not all physicians will be the foremost expert in mitochondria, so we want to make sure we get all the information out to the people who need it."

The algorithm serves as a decision tree for physicians that starts with their suspected diagnosis based on phenotype and then recommends specific single-gene tests or panels that would likely lead to a molecular diagnosis. In cases where those options lead to a dead end, the lab recommends exome sequencing.

Casting a Wide Net

Arup, meantime, has taken a more comprehensive approach to sequencing-based mitochondrial disease testing.

"Because of the complexity of mitochondrial disease and the fact that there are many genes involved in these conditions, we are using next-generation sequencing technology to detect mutations in the mitochondrial genome and the nuclear genes at the same time," Rong Mao, medical director of molecular genetics at Arup Labs, explained in a presentation at Cambridge Healthtech Institute's Molecular Medicine Tri-Conference last month.

Mao noted that it's difficult to make a differential diagnosis for mitochondrial disease because patients have very variable phenotypes, even when the same mutations are involved. As a result, the lab developed a broad-based test that assesses both the mitochondrial genome and nuclear genes — combined with a CGH array to detect large duplications and deletions in those genes — in order to cast a wide net to detect causative mutations. It launched the test in early February.

The Arup team developed different protocols for sequencing the mitochondrial genome and nuclear genes.

For the mitochondrial genome, it begins with long-range PCR for DNA enrichment, followed by library prep on Beckman Coulter's SPRI-TE, sample barcoding and pooling, and single-end sequencing on the Illumina HiSeq. Minimum coverage is 200-fold in order to detect low levels of heteroplasmy.

Mao explained that the group amplifies the mitochondrial genome twice, using different sets of primers, because mtDNA is highly polymorphic. "If you're only using one set of primers, very often SNPs can cause allele dropout, so if you have two sets of primers in a different location you can avoid that," she said.

In a validation study using eight Coriell samples with known mutations, the mtDNA sequencing protocol was able to detect all variants and demonstrated the ability to detect heteroplasmy at levels below 10 percent, Mao said.

For the nuclear genes, the team uses RainDance for target enrichment and library prep, followed by single-read sequencing on the HiSeq. Minimum coverage is 50-fold.

The lab uses CLC Bio software to analyze both the mtDNA and nuclear sequence data.

Have topics you'd like to see covered in Clinical Sequencing News? Contact the editor at btoner [at] genomeweb [.] com.

Wednesday, March 21, 2012

Epidemic- Bad Drs or Bad patients?











In the business world when there is a delay between divisions like sales to production to delivery, it is called a "bottleneck."

Usually, someone in Management of one of the three area's is charged with finding out what is causing the "bottleneck."

Sometimes the bottleneck is very easy to fix and operations based on the business model resume smooth operations. Sometimes though despite the best effort to discover what/where
the bottleneck is, it cannot be fixed quickly or easily. At times it is caused by multiple issues- maybe Sales isn't filing their paperwork, or production is not communicating with delivery.. or one of these area's is just poorly managed. He who is tasked with fixing this issue is not usually the guy anyone wants to see. No one ever wants to talk about problems or failings of themselves or their division.


At this point the Business is suffering delays and profit margins are suffering. Managers are losing commissions,clients aren't getting goods on time,HR is getting loaded with complaints from staff that aren't happy they are being blamed and want to have a written record of their innocence. The Sales department is getting an earful from clients and they are not able to make their quota's . The business comes to a dead stop.


In business you can actually hire or contract a special business that comes in with an objective and unbiased opinion to discover where the problems are and how to fix them. No one wants this.. you are under a magnifying glass. Your managers throw you under the bus. Usually part of the resolution is a lot of firing to remove any potential bad apples. But the owners or board of the company have no choice, in order to stay in business the bottleneck must be fixed. Sometimes just the suggestion that they will need to hire an outside team to fix the issue will encourage employees to reach deep into themselves and admit they are the problem and fix it- who wants to be fired?


There are 3 models you will not find this approach in- Medicine,Public Schools, and State and Federal government offices(Public Schools in theory still have some community input in how they are run so I listed them separately.)

Public Schools- I am guessing it was about 6 years ago when I read an article about some government parent survey. In this survey the majority of parents felt that Public Schools were failing academically and were unsafe. The survey went on to ask them about their own local public School - nearly every participant that felt "other public schools were failing" gave their own local Public School an A+.
Pretty much daily you can read an article about how unfit Teachers are sitting around playing checkers and getting paid their salary for years at a time, because they have complaints against them they are not able to be around children, but because of their Union or contract the District is unable to fire them. Or last month the schools that can deem a child's lunch from home as unfit and can force the parents to pay for a school lunch that includes fried chicken nuggets(good luck requesting an ingredients list)or pink slime injected burgers- after all the child's lunch was a fresh meat and cheese sandwich,clearly we all would rather our kids eat mystery deep fried fatty foods over something from home with nutritional value right? Big old BottleNecks- and nothing can be done, nothing will be done because Public Schools are not run on a business model. Administrators, then Teachers, then Janitors and then students in that order have importance to the Public School Model- they refuse to hire an intervention team or allow one to remove the bottlenecks-it will fail,it is failing.

State and Federal Government- My mind is so flooded with multiple examples of the huge BOTTLENECKS and gross loss in Government run organizations that I cannot pick any particular example. The most recent example that pops into my head is this report that gives Texas a big Fat F for transparency and public access to information. Again a clear failure because these are not run on a business model that allows for the identification of bottlenecks and/or the removal of them. Based on exploding gas prices,foreclosures,unemployment,corruption, it is failing.

Lastly- Medicine. There are a million examples of BottleNecks in our current Medical models. I have been shocked numerous times after reading research out of Cornell, or NIH or other association that has created a CURE or Treatment for what we thought were untreatable or incurable diseases. Mitochondrial disease was recognized in the 1960's. Today in 2012 you will still find many Drs. fresh out of medical school who say "Mito What?" Abby was born in 1995. It wasn't until she had been through four different diagnose's and 15 years having an unknown disease that it was finally diagnosed. In 1997 they had the information and tests to find her disease in her biopsy that year, but because that information did not make it to the treating labs,Drs, and hospitals until recently she went undiagnosed and miserable for most of her lifetime. Getting a disgnosis can take years. For Mito it has been a 50 year bottleneck. Even with a Dr. who has training in identifying a mito disorder,a patient is warned it can take YEARS. In the past couple years there have been tons of discoveries of what is damaging our mitochondria, yet that information doesn't make it to the treating physician,so certainly not to the patient.. Clearly a bottleNeck-but with no business model that includes how to find and remove bottlenecks we will continue to see 20 year delays between discovery and treatment. A few weeks ago a friend sent me a video where a Dr. William Gahl and his team identify Bottlenecks that have literally tied their hands and caused their patients to die, even though there was a treatment that would save their patients life. How many children,Moms,Dads and sisters are left to die for no reason other then a BottleNeck? Clearly, these bottlenecks are causing failure to provide competent medical care.

Are you angry now? I am. If a family allowed a child to die even though they knew there was a treatment- those parents would be in jail. If a family allowed someone who abused their kids to care for their kids and the kid got hurt- the family would be charged with neglect, likely serve jail time, and might lose their child. But the Public Schools aren't held to that same standard. If a family knew they had not paid their taxes then the IRS would come after them and if they don't pay they would go to jail, but our Government doesn't pay its bills and there are no penalties.

It is an Epidemic.

We the patients, the families, the citizens are GUILTY of allowing a system to grow and allow the blatant abuses and neglect of it's citizens. The only ones that will hold these models accountable to remove the BottleNecks that are causing this suffering, are we the PEOPLE. Until we wake up and are willing to do the work(which is often just admitting there is a problem)we the citizens will be responsible for ourselves and for their bottlenecks. In our refusal to admit accountability for these bottlenecks we are FAILING.

We can demand a responsible business model. We can demand accountability to remove the Bottlenecks that literally are causing the loss of life.

When I think of the loss of life, the distress, the poor care, the abuse clearly evident in our government run systems I cannot help but bring this poem to mind;

First they came for the communists,
and I didn't speak out because I wasn't a communist.

Then they came for the trade unionists,
and I didn't speak out because I wasn't a trade unionist.

Then they came for the Jews,
and I didn't speak out because I wasn't a Jew.

Then they came for me
and there was no one left to speak out for me.

Tuesday, March 20, 2012

Environmental insults and Mito

Somewhere in my heart, I truly feel there is a connection somewhere between environmental insults and Mitochondrial Diseases.

Certainly, we are finding a growing list of chemicals (round up?)that cause Mitochondria damage. We all agree that throughout our lives we build up mitochondrial damage due to exposure to life in general.


Fluoride,toxic medications, environmental insults, chemicals.. In the past 50 years we went from a society that used little of such things to a society that panics at the thought of not having our daily chemical bath.

I wish I could say I was one of those people that is making an intense effort to go "natural", but I am not. I did toss the Round up and I have a feeling I am really going to miss it when the weeds are 5 feet tall and it is 100 degrees and humid..I sure hope vinegar works on the Texas size weeds! Every time I think about gutting the house,I am overwhelmed- everything is probably something that should have danger warnings- from carpet sizing, to stain guards, to who knows what my fruit and veggies were bathed in(did you know they bleach some veggies not just to disinfection, but to make them pretty? go for the ugly cauliflower!)

The other day I was driving through the neighborhood. We approached a house that had Mega Texas/Houston sized weeds growing and we saw the strangest thing- the entire 6 person family was out in the yard, gently digging out each thistle and dandelion. I admired them for their efforts. Reminded me a bit of the old days growing up in the NW(anyone in my age bracket will remember lawn duty with the dandelion remover tool-YUCK!)I was awed that the parents were teaching their children not just that you don't need chemicals, but that weeding is not going to hurt them. You know after a day pulling weeds, they will sleep well. But, just as I was having all these warm and fuzzy feelings about this family I noticed their neighbors were out working on their yard. Along the driveway they had at least 4 different bags of lawn chemicals. The home owner was out in the sunny weather, using the lawn spreader to shoot the chemicals on thickly. In fact, he was spreading so fast there was a dust cloud around him. I figure he will have the nicer lawn. Actually, all the yards surrounding the family with the megaweeds were the shocking green perfection that only lawn chemicals can produce. So, I found myself pitying the family I had only moments ago wanted to commend- If everyone around them is bathing their yards in chemicals, they are getting the same exposure. Their itty bitty effort isn't making a bit of difference. By the time I got home I realized that they had made a difference. They chose to care for their lawn in an environmentally friendly way. They showed their children and their neighbors that there are options to chemicals.

The next day, my husband lined up the lawn chemicals on our driveway and thickly laid them down.

It took 15 minutes to chemically weed the lawn. IT saved his knees and back from aching. He saved all that time to work on other projects.

That is how we live as Americans now- Time is money, and time is more important then nature- or our mitochondria. Are there researchers looking to find out if our addiction to perfect lawns is causing damage to our mitochondria? It sure seems that we have seen a dramatic increase in many diseases and disorders in the past 50 years since we embraced the "Chemical Era." I wonder if we could turn back the clock and ban chemicals and wonder bread, if Abby would still have a Depletion?


Kristi over at BabyfoodSteps is starting a new monday column- I am so excited! She always brings the greatest information to light. This week's topic " The canary in the Coal Mine.". Definitely a MUST read!

Monday, March 19, 2012

Identifying Autism Cults-

I was blog browsing yesterday and found a blog called the "The thinking Person's Guide to Autism."

One post caught my eye, "Identifying and avoiding Autism Cults."


Reading through the article I instantly thought, WOW we could rename this article, "Identifying and avoiding MITO Cults."


Already the Mito World is dividing.

Those who follow traditional, those who follow alternative, those who blend both, those who feel their Mito Dr. is a god, those who don't believe it is Mito at all,and the we will question everything Cult. In Houston, we don't have as many alternative health options, but they are growing. We don't have options of Mito Drs. considering the massive size of our city, state and med Center. So, when those options come here, which cult will you follow? Will it unite us, or further fragment our community?

We all pick a "Cult", to some degree. The question is, do we understand that we have a choice? That not one particular cult has all the answers.



It certainly would be easier to follow one cult with absolute conviction. I don't think I am a capable of that... but we will see where this journey takes us- who knows, maybe we will find a Dr. that will inspire me to become part of the "My Mito Dr. is a God" cult- so far it hasn't happened yet in my life time, but who knows? It sure would be easier then questioning every single bit of data.

Reading over this, maybe I have a "cult" - The "No Question is a Stupid Question cult. :-)

Sunday, March 18, 2012

Resting up.

We are just hanging around this weekend. Abby has two Dr. appointments this week, and sometimes that is just too much. We figured if she skipped her Sunday trip to the movies she might have enough energy to make it through the week without flaring up. Since she has been wiped out this week, she probably would have skipped it this weekend anyway.

No scope results. I suspect it will be on Thursday before we hear. However, if there had been anything that could be treated quickly or needed to be treated I am sure they would call- we are kind of expecting to find what tests are next instead of a treatment plan.. Who knows?

Nephrology is first up. Abby's proteins have been rotten for the last couple months, but the scope Friday caused them to drop(previous post). They are creeping back up, but we tease they will drop again before we go to the Neph and then the Nephrologist won't see what we have been worried about! LOL Like a 2 year old seeing the ped- the baby can be up all night with a 104 fever, but the minute you cross the threshold into the Drs. office that fever will drop to normal! :-)

Abby's energy has been all over the board this week. Lots of naps. She will come out to get a drink and one look at her face and I feel just rotten for her, she will look just terrible. Then a few hours later she will come out after resting and look pretty darn good! Lots of stomach pain with eating anything, but it seems to settle down within a couple hours. She has held her weight again this week so all is good. I suspect that pain is probably what is causing more fatigue then usual- just guessing though.

I am calling it a decent week though- no new symptoms! The hypoglycemia has settled down for now. A successful week around here is not having to figure out something new and whether we should be worried or not.


Saturday, March 17, 2012

Houston CPS- again.

Not Mito related, but what this poor family has been through captures what I have been hearing from Houston and Texan families.

LINK

Lawsuit Claims CPS Removed Kids Out of Spite
Updated: Friday, 16 Dec 2011, 7:15 PM CST
Published : Friday, 16 Dec 2011, 6:35 PM CST

RANDY WALLACE
Investigative Reporter
HOUSTON - If Child Protective Services had its way, 5-year-old Katelynn Allen wouldn't be with her grandmother right now. Neither would her 6-year-old brother Elisha.

CPS wanted them to be adopted by non-relatives.

"I don't even think I can find a word that can summarize what I went through," said the children's grandmother, Houston Minister Teresa Allen.

It was Allen who first contacted CPS back in August of 2009.

She was concerned about her grandkids because of her daughter's alleged drug use.

Three months went by and nothing happened.

In the meantime Allen took the kids to keep them safe.

Then, according to her lawsuit against CPS, a CPS caseworker called.

That case worker stated, "She was in fear of losing her job for missing a deadline to investigate the matter."

Allen complained to the case workers supervisor and anyone else with CPS that would listen.

She wanted action.

"You go all the way to the top and you just can't believe that there was no one in authority that could have stopped, looked and listened and investigated my complaint," Allen said.

"She finally went over the head of the case worker, then over the head of a supervisor to the program director," said Allen's attorney Chris Branson. " She was told in no uncertain terms that that was a bad move on her part and they were going to show her exactly what happens to people who make bad moves."

The next day Branson said CPS took Allen's two young grandkids away from her.

"I did not know what was going on, I did not know why," Allen said.

"The initial taking was illegal," Branson said.

Branson said CPS claimed the kids were in danger that's why they took them with no court order in hand.

"My client did nothing to have CPS take these kids, nothing came out later," Branson said.

For the next 11 months the lawsuit claims CPS workers did everything they could to discredit Allen who was denied access to her grandkids, and was repeatedly told they would be adopted by non relatives and she would never see them again.

"Anger, fear, the rejection, I mean it makes you feel less than a human being," Allen said.

In a hearing the grandmother won the right to get her grandkids back. But she hopes the lawsuit will lead to changes at CPS.

"We believe this is a good case to set a precedent that will send a clear and distinct message to Child Protective Services to clean up their act and do things the right way," Branson said.

Friday, March 16, 2012

Cellphones during pregnancy?

Normally I take what I read in the Yahoo Health section with a grain of salt. If I took all their health warnings seriously I would be eating raw,vegan and living the Amish way, and still doomed to die young from my clearly negative health behavior! :-)


Yesterday they posted this article-

"THURSDAY, March 15 (HealthDay News) -- In experiments involving mice, fetal exposure to cellphone radiation appeared linked to symptoms in offspring that resemble attention-deficit hyperactivity disorder (ADHD) in human children, Yale researchers report.
Moreover, these problems with attention, hyperactivity and memory continued when the mice became adults and were worse the longer they were exposed to cellphone radiation in the womb, the researchers said.
"The hypothesis was that the developing brain might be more susceptible to these types of insults," said senior researcher Dr. Hugh Taylor, a professor and chief of the division of reproductive endocrinology and infertility in the department of obstetrics, gynecology & reproductive sciences.
"We found they seem to have behavioral changes like ADHD. I don't want to sensationalize this -- mice don't have ADHD -- but they had problems with memory, impulsiveness and hyperactivity," he explained.
There have been studies in humans that correlate the amount of time pregnant women spend on a cellphone with their children's ADHD, Taylor added.
"But, these studies were largely dismissed because there are many other things that correlate with cellphone use," he said. "This study is the first one that shows that there is a cause-and effect-relationship," at least in rodents, he said.


The article continues on but what had me thinking was the comment "dismissed because there are many other things" What things?

Does that mean pregnant women should not go through the scanners at the airport?

What about the impacts of environmental insults? Or radiation through your car window if you commute daily? Sun exposure? Food pasteurization? Living close to a nuclear power plant? Or like my hubby in the early years who worked on a nuclear power plant?

It has been 17 years since I had Abby- it was scary enough back then to be pregnant- I think being pregnant today must be a terrifying experience for any parent who reads any of these health warnings.


This article does leave me wondering if the steak sauce I craved, or the ribs, or the cookies and who knows what else may have triggered Abby's mitochondrial depletion issues in the womb- I wonder if science will be ever able to unravel the mystery?

Wednesday, March 14, 2012

Anesthesia reduces Proteinuria

One of Abby's special features(sports car reference!)is that every time she has received anesthesia in the past two years, for the following 48-72 hours she shows a HUGE reduction in proteinuria.


Even getting plenty of a local for her muscle biopsy provided the same result- a temporary reduction in proteinuria.


For the life of me, this just doesn't make any sense. The only connection I can even try to theorize would be something to do with adrenalin.


For the last couple months she has mostly been dumping 3+ and 4+ but like clockwork, Saturday and Sunday,following her scope, she dropped down to 1+ and 2+. Of course by Monday she started climbing back up.

I also could look at it as every time she has needed anesthesia her body has suffered a trauma- so maybe it was the trauma that caused the reboot on the proteins? Not sure that fits, because every time she over does it, or gets sick, the proteins shoot up- I would think being sick or overtired her body would register as trauma..

All these little weird special features must mean something, but what?


So coffee time this morning will be googling anesthesia and renal. :-)

Tuesday, March 13, 2012

Impressed.

I gotta say, I get more and more impressed with the GI we picked for Abby. First thing Monday morning the staff from the office that does the scope was calling to check up on her and make sure everything was fine. I don't think that has ever happened for Abby or me for that matter. I cheerfully was able to tell them that Abby and I were so impressed with the quality of care she had received, and that out of all the procedures Abby has had over the years, they made this the easiest!

Then, an hour or so later the Nurse from the GI's office called to schedule a follow appt for next week- I was in a little shock to be honest. For the past couple years we spend a great deal of time calling nurses and forcing good communication. IT was incredibly refreshing that they took the upper hand and we now feel downright spoiled by their office. Doesn't take much to make this stinky cheese kind of family quit with the whining and complaining- comunicate and try your best- and you are on my golden list!


Abby's stomach pain is slowly settling down. Though she needed pain meds again last night. I suspect because she ate solids. I made a poached tilapia fillet on rice with only a bit of salt for her- no fats or other seasoning. I guess it will take a couple more days to get her stomach back on track. Thankfully, she is not getting that instant full feeling within 2 bites of food, unfortunately she is stuck with waves and spasms of pain..but since they are lessening, I am not going to worry too much.


We are all betting that nothing will biopsy- but even then, at least we ruled out a whole bunch of stuff which will be helpful.

Another discovery- if you empty a capsule of Zegrid OTC onto a spoon of coconut yogurt- the end result on the tongue is like a yucky flavor of pop rocks!! :-)

Monday, March 12, 2012

Mito and CPS

This is a topic that has been on my mind a lot lately.

It sure seems like the Mitochondrial population is often targeted by Drs and CPS and the only explanation that explains the higher then normal percentages is lack of education. Which means I need to make some more ribbons and work a little harder to reach out and help as many as possible to understand that Mitochondrial disease is real. It is genetic and cannot be made up,or fabricated. IT is most often progressive, and can be terminal.


MitoAction has a section on their site called - Munchausen by proxy Accusations in Children with Mitochondrial Disease.


I found this Advocacy group in Austin TX and they seem to have some experience with Mito Clients- Parent Guidance Center.

Here is the a Guide that the Parent Advocacy Center recommends reading if you have contact with CPS- A Families Guide to the Child Welfare System

Finally this link- National Coalition for Parent Advocacy in Child Protective Services.


Another resource may be through your local/state/National Homeschooling websites. Unfortunately, despite Government and University research that proves Home Schoolers are actually academically more successful then their public school peers,better prepared and more successful in College, and socially and emotionally often healthier then their public school peers, the home school population has often been a target of CPS or the school districts. Many of the home school websites provide links to other advocacy and guides on what to do if you are being unfairly targeted.


With Abby approaching 17, and with a clear history of academic accomplishments in College, I would hope this isn't something we have to deal with- so why my interest? Well, considering we both have home schooled and have a child with Mito, the social impacts of both populations are clearly part of our lives. Frankly, it angers me to hear of either population being unfairly targeted because folks are uneducated and we happen to have a system that refuses to self educate and stay up with the science. I haven't found statistics from CPS yet that would give me any numbers of how many Mito families are being investigated in Houston, but based on what I am reading and hearing from Drs.,advocates and families, Houston and TX in general seem to have a unusually high number of false allegations. Again from what I am hearing, it is staff at our hospitals and schools that report to CPS more then anyone else in these cases.

Although I am sure that abuse occurs in all populations of children, it is statistically IMPOSSIBLE that being born with a genetic disease would make a family at higher risk. Yet, from the numbers of CPS investigations I am reading about, statistically if your child has Mito you are more likely then a child without to be investigated by CPS. The impact of being falsely accused causes terrific emotional and social scarring.

Today, home schoolers are still targeted, but far less then 10 years ago- because finally, the rest of the world has become educated and recognizes that home schooling can and usually is, a sign of a healthy family, not a dysfunctional one. But it took years of brave families making the effort to educate the masses that it was a healthy choice for their family.

All of us in the Mito Population can help to stop the unfair targeting of Mito families- we must continue to be diligent in spreading awareness.

Print some basic flyers or business cards with links to UMDF and MitoAction- share them. New Drs, PT and OT's, Teachers, friends..I have seen this year a lot of students creating projects that capture the many different faces and presentations of Mito- I am so proud and grateful to each of those students.

With awareness, Mito families will be better understood, and hopefully no longer a target of protection agencies simply because their disease is not understood. Too many Drs. still do not understand that Mito has THOUSANDS of variables and presentations. We can help them understand through awareness.

Finally, I know CPS is a necessary organization. They help thousands of children and adults each year that without CPS would be in danger of extreme abuse. I support CPS and know they are often overworked and underpaid. It is the policies that have been set in their system that have likely caused the disproportionate number of investigations in the Mito World. I am hopeful that CPS is recognizing this as a problem in their organization and are working to re write their policies- I know they are only doing their jobs, but if their own policies are causing great harm to children and families, then clearly those policies need updating,and rewriting.

Sunday, March 11, 2012

Not quite perfect...

Yesterday afternoon Abby woke and developed extreme pain..(ER level pain) we did get a hold of the Dr. and we did end up trying some pain meds and antacids- those and just some time settled the pain right down to manageable levels. The Dr. did not think the pain was from the scope- but probably whatever primary disorder that is causing the gastritis.. this was by far the worse pain Abby said she has ever experienced..

6am now, and she has been fine and sleeping mostly since. We went ahead and put her on a full liquid(Elecare)diet for 24-48 even though they said she could eat normally. Her body might just need a break after all that- an Ultra sound, Scope and 18 hours without food and fluids, that is a very long day for any Mito patient.

Going to be a long week waiting for her results....

Friday, March 9, 2012

Everything went fine...

Found inflammation everywhere, Findings, Reflux Esophagitis, Antral Gastritis, Gastritis..


Now we wait for the biopsy results next week.


This place is great, they actually took pictures of her insides and handed them to her when she woke up showing her where the inflammation was and where they took the biopsy from. I will try to scan the pictures and post them.


They provide online results of the biopsy and ultrasound next week and we see the GI Dr. the following week, unless we need to see him sooner.


Overall, I am so pleased we stuck with a "traditional" Dr. approach and avoided the Mito World Zebra approach- it just was so nice to see her treated like the normal person..

So far no ill side effects and she is moving around like it never happened- Of course we will watch her closely.

She did have an allergic reaction but mild, and the tubing for oxygen against her skin rashed her up seriously- but it is all faded now and she said it was easier then the kidney biopsy and muscle biopsy and urinary reflux test by far!

It was clear from the moans, groans, tears and gagging noises in the recovery, that Abby was an exceptional patient- Her GI was quite impressed this tiny little 16 year old managed perfectly compared to the other patients today.

Only one funny- as she woke up she said "my mouth tastes like Apple Crumb Pie!" and she said it a couple times LOL She said when they used the spray it tasted awful! But, on waking up it had transformed into a very sweet Apple crumb pie flavor :-) At first I thought she was just dreaming about apple pie, heaven's knows she hasn't gotten any in a long long time, but after a bit we realized she was serious and reasonably awake :-)



Fingers crossed that inflammation is all H-pylori or something equally easy to treat.

Scope Day

Ultrasound and Scope Day-


5am and we are up and drinking coffee.. Abby is NOT having a good Day so far.. so it is going to be a terrible,awful,no good, very bad Day- wish I could move Australia kind of day! :-)

My wish is that they find either H-pylori,or gallstones, or an infection- for once, something that they can fix and we can move on-

Statistics are still in my favor with this, so fingers crossed.


alright- back to my coffee.

Thursday, March 8, 2012

NewBorn Screening Tests-up to age 8

A friend told me yesterday that in the State of Texas many of the metabolic disorders and other disorders that are automatically screened in other States are NOT part of the standard Newborn screening here.


However, you can for 35.00 order a supplemental screening test for your child and apparently until your child is 8 years old.

The supplemental screening test covers;

Screened Disorders
Disorders Detectable Through Supplemental Newborn Screening
Amino Acid Disorders:
Guanidinoacetate Methyltransferase deficiency (GAMT)
Homocystinuria: Cystathionine beta synthetase deficiency (HCY or HCYS)
Hypermethioninemia: Methionine adenosyl transferase deficiency (MAT or MET)
Maple Syrup Urine Disease (MSUD)
Nonketotic Hyperglycinemia (NKH)
Phenylketonuria (PKU) or Hyperphenylalaninemia
Tyrosinemia type I (TYR-I), Tyrosinemia II (TYR-II), Tyrosinemia III (TYR-III)

Urea Cycle Disorders:
Argininemia: Arginase deficiency (ARG)
Argininosuccinic aciduria: Argininosuccinate lyase deficiency (ASA)
Citrullinemia type I: Argininosuccinate synthetase deficiency (CIT I)
Citrullinemia type II: Citrin deficiency (CIT II)
Hyperammonemia, hyperornithinemia, homocitrullinuria: Ornithine Transporter Defect (HHH or ORNT2)

Fatty Acid Oxidation Defects:
Carnitine palmitoyltransferase I deficiency (CPT-I or CPT-IA)
Carnitine palmitoyltransferase II deficiency (CPT-II)
Carnitine/acylcarnitine translocase deficiency (CACT)
Carnitine transport defect: Carnitine uptake disorder (CTD or CUD)
Glutaric aciduria II: Multiple acyl-CoA dehydrogenase deficiency (GA-II or MADD)
Long-chain hydroxyacyl-CoA dehydrogenase deficiency (LCHAD)
Medium-chain acyl-CoA dehydrogenase deficiency (MCAD)
Mitochondrial trifunctional protein deficiency (TFP or MTP)
Short-chain acyl-CoA dehydrogenase deficiency (SCAD)
Very long-chain acyl-CoA dehydrogenase deficiency (VLCAD)

Organic Acidemias:
Beta ketothiolase, Short-chain ketoacyl thiolase or Mitochondrial methylacetoacetyl-CoA thiolase deficiency (BKT or T2)
Ethylmalonic encephalopathy (EMA ENC)
Glutaric aciduria, type I (GAI)
3-Hydroxy-3-methylglutaric aciduria: 3-Hydroxy-3-methylglutaryl-CoA lyase deficiency (HMG)
Holocarboxylase synthetase deficiency: Multiple carboxylase deficiency (HCS or MCD)
Isobutyryl-CoA dehydrogenase deficiency: Isobutyrylglycinuria (IBCD or IBG)
Isovaleric acidemia: Isovaleryl-CoA dehydrogenase deficiency (IVA)
Malonic aciduria: Malonyl-CoA decarboxylase deficiency (MAL)
2-Methylbutyryl-CoA dehydrogenase deficiency: 2-methylbutyrylglycinuria (2-MBCD or 2MBG)
3-Methylcrotonyl-CoA carboxylase deficiency (3-MCC)
3-Methylglutaconic aciduria type I: 3-methylglutaconyl-CoA-hydratase deficiency (3-MGA type I)
Methylmalonic Acidemia: Methylmalonyl-CoA mutase deficiency (MUT or MMA)
5-Oxoprolinuria: Glutathione synthetase deficiency (5OXOPRO) or 5-Oxoprolinase deficiency
Propionic acidemia: Propionyl-CoA carboxylase deficiency (PA or PROP)
Some Cobalamin or Vitamin B12 Disorders

Revised: April 2008
Implemented: May 2008
Some of the disorders listed vary by type and time of onset of symptoms and though the disorder may be detected by this methodology, types and time of onset may not be distinguishable.


This isn't something anyone ever told us when Abby was under the age of 8(but maybe it wasn't offered back in those days?) After talking to a few people, it doesn't seem that all parents are aware that this critical and expensive testing is available for your child for an easy and super cheap 35.00 bucks.

Contact : Newborn Screening Request
Please complete the form below to request a supplemental newborn screening kit.

Kits are sent first class airmail. You should receive your kit through the mail in seven to ten business days, and payment will be collected when you submit your completed kit to the Institute of Metabolic Disease at Baylor. Kits sent outside the continental United States may take longer to receive (sometimes weeks longer).

For additional information, call 1.800.4BAYLOR.

A day in the life of a "normal."

Abby and I were watching our secret addiction (Big Rich Texas, talk about a waste of brain cells! But we LOVE it!)Monday morning and chatting as we usually do.

We got to talking about what a "normal" family manages to accomplish in a day vs what she accomplishes. We talked about various friends and family and she said it was flabbergasting to think of how much energy they have. She said sometimes she does wonder what it would be like to live a home where everyone had 10 times her energy- she actually shuddered a bit! :-) We both thought it would interesting to have a "normal" energy person live her life for a day, and she to at least be able to silently observe those normal families.

Abby has always said that she felt she is not as bad off as other patients. She has never had the energy or stamina, and thus she says she isn't really sure of what she is missing. She feels terrible for patients who had normal energy, and then who lost it.

Abby has a few different cycles, mostly we could base them around sleep. She has "hibernation" cycles and then "short sleep" cycles.

The hibernation cycles don't come very often. Usually every 3-6 months. These periods can include from 15-20 hours of sleep a day. Sometimes the cycle is just a week- other times she has gone a month to 6 weeks of sleeping around the clock. During hibernation periods she de-conditions since she isn't moving at all. Which makes her more symptomatic with certain issues when she starts to come out of the cycle. She will have drops in her oxygen, more dysautonomia symptoms, more "wobbly" legs. As she comes out of that cycle she tends to have continued days of better sleep for awhile until she starts into cycle "short sleep." During hibernation she will wake up long enough to sip or nibble, but not much. Even after weeks of hardly eating she won't lose weight- it is almost like she is "frozen in time." The couple weeks after hibernation despite the de conditioning and dysautonomia symptoms a lot of things seem better. Her head feels clearer. She feels more grounded. She has less GI issues. Often even her kidneys will be throwing less protein. Just as her de-conditioning issues start to fad and she doesn't feel as weak from the hibernating, and she finally feels like she is making some solid improvement she will go into "short sleep" cycle.


Short sleep cycle usually means 4-5 hours of poor quality sleep at a time,shortly before a hibernation this could be reduced to 2-3 hours at a time. I would say 75 percent of the time Abby is in "short sleep mode." Lots of catnaps throughout the day. Her total sleep usually still exceeds 10 hours, but very broken. For the first week or so of this cycle she seems to handle it well- I guess she is still caught up from her hibernation mode. Day by day we notice her proteinuria starts to jump. Her GI issues kick in. It seems she her body becomes hypersensitive to every food, supplement or medication. Over all though, despite feeling deprived of sleep, this is probably the time she has the most energy, though sometimes it more "negative" energy. She will need to move around because her legs get restless, but the pacing will wear her out. After about 2 weeks of this cycle she starts to get rundown. Usually this is when she will catch a cold. Her allergy symptoms kick in with a vengeance. This is when "new" or "revolving" symptoms start to spring up. The latest is reactive hypoglycemia. Last round her intention tremors became more permanent. A month into this cycle she starts to really drag. She will struggle to get out of bed. Showering becomes a huge hassle. If her last hibernation was a long one, we will notice new Beau's lines in her toenails at this point in the cycle. Her hair will start to fall out. Her muscles will become achy. She becomes exquisitely sensitive to temperatures. She will have bouts of kidney pain, her pulse will jump,BP drops, she will feel lightheaded and have to be careful to move slowly to avoid fainting. During short sleep cycle, she will have a day or two here and there that are just "great", and I think they make the other days where she rarely feels like crawling out of her comfy bed far more bearable. During short sleep cycle it becomes very important to find balance. If she has too many Dr.s appointments or other activities in a row, this is when she has a few really bad days. Which usually lead to a cold, sinus infection, more GI issues, extreme proteinuria.. Last short cycle we noticed that after a nap her eyes were unable to focus, it was disturbing to see her eyes moving in the wrong directions when she tried to focus. Thankfully, once she was fully awake the muscles tighten back up.

Looking back, Abby has had these cycles since birth. Just milder. Sleeping and eating issues are considered normal in the baby and toddler world, though clearly Abby's issues were on the extreme side even then. Since puberty each rotation of these cycles has caused her to become more and more symptomatic. Each cycle brings some new symptom and they are sticking around instead of being alleviated by hibernating.

A few months ago, Abby realized that if she wants to go somewhere(movies is a favorite)she no longer has the energy to shower, dress and go on the same day. She will shower the day before. Rest. Wait for her hair to dry. Brush it out. Nap. Wake up at the crack of dawn, figure out what she is going to wear and round it up. Rest. We try to plan for afternoon movies so she has all morning to get herself together. She will throw on her clothes, brush her teeth and head out. If she is having good days, she might spend extra time on her hair or makeup.. After a movie she gets home slides into PJ's and naps. After a couple hours of rest/nap she feels restored enough to want to come out and eat. The day after the movies means extra sleep, sometimes wobbly legs. Maybe the dysautonomia symptoms will be stirred up, or her GI. It takes a few days of her short cycle sleeping before she is ready to shower again.

For years I have tried to get Abby to explain-describe what she "feels like" so I can try to understand what is going on. The best thing I can describe it to would be how you feel after you have had the worst flu ever. Where you had a fever of a 104.. You ached and laid in bed thinking God must be punishing you because why else would you feel so rotten! You have a cough that makes you pee yourself with the effort. Where you are just too sick to even think about trying to get to the Dr. office because it would just take too much energy. Where you know if you get much worse your only option is the ER. You send loved ones to the store, hoping that one of the zillion over the counter medicines will at least knock you out if not relieve any symptoms.. After about a week, you wake up one morning and lay there and realize it is finally going away. You tentatively make it to the bathroom and crawl into the shower. Your whole body shakes and breaks out into a sweat with the effort. Finally clean you try to find a clean bed to crawl into and fall into the most solid sleep out of pure exhaustion, as you nod off you feel exhilarated that you are finally on the mend though weak as a kitten. That feeling of shaking and sweating with the effort and that awful weakness is what I suspect Abby feels like more often then not.

I wish I could step into her body for a few days to help me understand how different her body functions. Maybe I could learn something that would help her, but more then that it would be a lesson in empathy for me. In my younger days I had the type of energy that would inspire me to wash windows at 10pm at night. These days not so much. I miss that energy. I cannot imagine though, feeling so weak all the time. Maybe Abby is right, for her it isn't as bad because every day of her life is a battle to move, or a battle to try to keep up with all the "normals". Maybe a few days of living the life of a normal would make this far worse for her. Ignorance can be bliss.


Still, though I think I understand how she feels, I know in the scheme of things I am a Normal. I cannot understand truly what she is coping with daily. All I can do is try.
 
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