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.

Thursday, June 26, 2014

My Kid is Sicker then Yours-

If you have a child with ANY type of illness you have dealt with this before. Heck even chicken poxes or strep throat. You share that your child missed 5 days of school because they caught the pox, and someone will say, " oh that is bad, but my son missed 12 days! You are so lucky!"

We all do it. It can serve a good purpose, it does make me grateful. When I am feeling pretty sad about the extra challenges Abby faces, I read about someone who "instead of 5 days had it for 12" and suddenly, instead of being sad I am so freaking grateful that Abby's restrictions are so minimal. We are lucky! With food and environmental changes and avoiding medicines and staying homebound she is pretty stable- that is far more then many with Mito or Mast and many other chronic illnesses will ever be able to have.


But sometimes it is just wrong.


Try to voice an opinion and you will get shutdown with the "my child is sicker, so I KNOW more then you" sometimes said that bluntly but more often insinuated. The only message you will hear is, " you have no right to be as sad,scared,angry,or opinionated because you know nothing" (Jon Snow! sorry could not resist)


Total baloney. Really WRONG. Unfair. Cruel. Usually done in absolute innocence.


And boy am I Guilty of doing it.



Last year the youngest son of one of my oldest friends developed asthma symptoms. I mean the wake you up in the middle of the night choking and gaging..those moments where you fear for their lives, the not able to run around.. the steroids needed kind of breathing issues.


She and her husband were TERRIFIED. Shocked, scared, bewildered, confused, sleepless nights, guilt, uncertain of his future, not sure who to trust.


My first couple thoughts? Why are they so upset, it is JUST asthma.


Pretty terrible of me right?

I grew up in a home where either my brother or I were struck with days and days of not being able to breath. Like it was yesterday I can remember laying as still as I possibly could and telling myself to breath as a child, certain that each breath I fought for could be my very last. For hours and sometimes days. They did not have the preventative or breathing treatments they have today. During that era(many years ago) they still often blamed asthma on the child because they were too high strung, too sensitive. For me, it was Normal. My Dad has severe childhood asthma. My brother and I learned to deal with it, what choice did we have?

When my oldest was born and around a year old she too developed severe asthma? It was scary, but to my surprise they had all sorts of medicines they could treat her with, when I took her in and they sent us to the ER and spent days in the hospital each year because her breathing was so bad, I was shocked, she was not any worse then what I or my brother had suffered. For me, asthma was NORMAL.


Add to that Abby's life long journey of zero clarity, of never knowing "why" her body is so different.


You would think that would have made me empathetic. Understanding. Compassionate.

NOPE, to my horror I caught myself trying to figure out why she was so upset. SHAME ON ME.


When I stopped to think about it I did talk to her about it and realized a couple things.


Her family had never dealt with a childhood chronic life altering disease process. In that snapshot of his childhood that diagnosis was as bad as when we heard the word Mito and Abby in the same sentence.

She was as scared, as confused, as horrified, as helpless, as determined, as fearful, as I had ever been. She had to deal with Drs. that treated her exactly like we had experienced, the type of Dr. that acted like you were wasting their time, the Drs. who felt there was nothing wrong, the Drs. who blamed the parent or the patient..

To her the inhaler was as despicable as the thought of a feeding tube.

To her watching him sit quietly doing a breathing treatment was the SAME as me watching Abby having to ask for help to stand up.

To her knowing something was medically wrong with her child was no different then knowing something is medically wrong with Abby.

To her his future was as unknown as Abby's.

To her she lost just as much sleep as I had.

Get it? The emotions were IDENTICAL.


In the world of chronic disease I see other parents do the same thing I did daily. It is wrong.

I won't ever know what it is like to have a child who will never develop an adult mind, but then that parent will never watch their child develop a brilliant adult mind but have a body too weak to use it. To a parent with a child who will never marry or even understand marriage I won't know what that feels like, but they will never hold a sobbing adult mind in a broken body who grieves becuase she feels she may never have the energy to experience the joy of marriage. Where someone else's child will never experience a "normal" sleepover because their mind will never mature, they won't watch their child watch their friends go out to prom,friday night parties and dates and watch the child mourn she doesn't have the energy to experience what her mind so wants to try. I won't know what is like to bring a clearly severely disabled child to a Dr and have people uncomfortable to ask what is wrong, or people even avert their eyes in discomfort, but they won't know what it is like to take a child who looks so freaking healthy and try to convince a Dr. that they need their help because just the week before they were terribly ill.

Abby always says she has it easy. She said she has always been sickly. She said the ones who have her sympathy are the ones who had full lives, and healthy bodies and suddenly one day they lost it all. She said it makes it easier to not miss what she could never have.. I wish I had her insights.


Different symptoms but IDENTICAL heart break. IDENTICAl pain.


Her advice and her thoughts, and her emotions and her opinions are just as valued, justified and credible as mine.


I have learned a lot from her during that tough year. She has kindly let me work through my lack of self awareness. I will probably make the mistake again, but I am sure working harder not to do it.


When she talks, when she expresses how she feels I will NEVER think "what is she so upset about" again.


When it comes to us being Mom's of sick children? We are identical.


Tuesday, June 24, 2014

Caregivers are NOT Victims

This post was on Facebook a couple weeks ago and every time I think about it I have become even more offended, horrified and shocked any person would ever feel this way.






Caregivers are often the casualties,the hidden victims. No one see's the sacrifices they make.
Judith Long





Victims? Sacrifices??? What a bunch of self indulgent,selfish baloney.


It is a GIFT. A RESPONSIBILITY. A JOY. A CHOICE.


I feel the same way about "Me Time"- again if you need to have "me time" in order to be a parent? You should never have had children. From the second that child starts growing in your womb, "me time" should NEVER be a priority, that child, that gift is first, forever.



The moment you decide to become pregnant or adopt, you will be a caregiver, a parent, and second in line for the rest of your life. Out of all the gifts in my life, the ones I hold dearest are that I have children I can work for, I can love, I can give to, I can help, I can support, I can share with, I can put FIRST.


If you see being a parent of an ill child makes you a victim? Don't have children. You had no business having children if you are unable to rejoice in their life with all of their individual traits that make each of us so special.

No pity. No sorrow. No envy. No resentment.


If you think you have been dealt a bad hand and deserve more from your family,society, community because your child is sick? You have a major problem. You KNEW when you got pregnant that children come to us as individuals with individual needs and wants. You KNEW you had to be willing to put your needs aside for your child be it that they be gifted or disabled.

Each child is unique.

If your child is sensitive or shy each time other children say something cruel or the world is insensitive your heart will break with theirs. If you child is gifted? You will have sleepless nights wondering if the choices you make for their education will allow them to embrace their unique gift and have a happy life or if those choices will forever taint and limit their academic strengths and views on society. If your child is a gifted ballerina or athlete you will struggle to pay the bills, to travel with them for training, to find equal time for your other children and have many sleepless nights wondering what their future holds and how the choices you make will impact their happiness and success as adults.

No matter what traits your child has, there will be hard decisions,but what a gift that you are are trusted with these decisions.


It doesn't matter who your child is, what is unique or different or normal about them, parenting is the hardest job and the biggest joy any person can experience, you are NOT a victim. You are lucky, very very lucky.

When you consider yourself a victim or that parenting a disabled child is a sacrifice? You need to really take a deep look at yourself and set your priorities straight. Your child, with all their unique traits is the greatest gift, and if they have special needs that give you the opportunity to work harder? You are even luckier. You have been given the opportunity to make an even bigger impact.


I am not saying there won't be days that seem to last forever, or days you feel so weary you wonder how you will make it till bedtime, what I am saying is when you do lie your head to your pillow you should feel lucky to have been gifted with children. Not just when they are babies, or toddlers or children or teens.. every single day for the rest of your life.

Gifted not victim.

Everyday Muffins(gluten free, dairy free, corn-free, nut-free, soy-free)



I named these "Everyday" muffins because at least for the last couple months, Abby has eaten them EVERYDAY! :-) She goes through stages where there are certain foods that seen to agree very well with her body and serve their purpose as well. Eggs,blueberries,yogurt are all positives and this also serves up a good dose of sugar to help her digest them. They just seem to "work" really well. You would think she would tire of them, but not so far! These are so easy to make(I can whip up a batch before coffee!!! and have successfully made them just mostly eye balling the ingredients instead of measuring, that forgiving!) and so far have been no-fail for us. Since beginning the elimination process a couple years ago, Abby has always done consistently well with blueberries. Wild blueberries are the hands down favorite, though regular blueberries are loved as well.


2 1/4 cup all purpose gf flour
1 tablespoon baking powder(homemade)
1/2 teaspoon salt(very hard for the corn sensitive crowd,we have been using 1 brand of pink himalayan)
1/2 teaspoon guar gum(still using NOW brand)
3/4 cup granulated sugar(Domino's)
6 tablespoons grapeseed oil(TJ's )
1/2 cup plain fullfat coconut yogurt(homemade)
3 large beaten eggs
1 teaspoon vanilla extract(homemade to be corn-free)
1 1/2 cups frozen wild blueberries(for the corn-free buying frozen berries can be tricky! freeze your own for corn-free)
2 tablespoons sugar


Preheat 375


In bowl mix gf flour,baking powder,salt,guar gum,3/4 cup granulated sugar.


Add grapeseed oil,coconut yogurt, eggs,vanilla extract. Mix just until dry ingredients are wet.

Lastly add frozen blueberries. Scoop into greased muffin tin or papers(these can have hidden corn,chose your papers carefully.) about 3/4 full. Sprinkle with a bit of granulated sugar.


Bake 20-23 minutes.

Makes at least 18 muffins.

Because of the blueberries these keep well for a couple days and we have individually wrapped and frozen them as well.


TIP: If it annoys you for your batter to turn blue from the frozen berries, thaw berries,rinse and drain and dry and then add to the mix. We have no problem with a pretty purple tinge to our muffins.


Sunday, June 22, 2014

Gochujang(gluten free, corn-free, soy-free, chemical free)


I watch Food network and am a huge fan. Chopped especially. Often they will use some new ingredient on the show I have never heard of, which then leads to a google search and if I think it is something either Abby or the rest of us would eat I go hunt Houston International groceries(or order it) until I find it.


In the Food Network magazine a couple months ago they were talking about the Korean Gochujang. A slightly sweet, spicy,and tangy red pepper sauce. Sounded great! Then I realized it was a fermented product, so that meant Abby could not eat it, but figured odds were Derek would eat it, I have never seen him pass on anything spicy.


To my surprise it was carried everywhere! Well, at least at the various Asian Markets we visit. I threw a container into my cart, ASSUMING it would be at least safe for Derek- Hardly! I got it home and read the ingredients- Corn syrup and Wheat as well as soy were in the first couple ingredients.. sigh.. I was so annoyed!!! No wheat(gluten free) for Derek at all, and he does much better without any corn and we do what we can to avoid soy. Some ingredients we just try not to bring in the house, we find it is not only kinder to Abby to not have forbidden ingredients in the pantry or fridge but safer.


Feeling denied I threw it in the trash. I opted to try my hand at making my own.


Instead of corn syrup I used palm sugar(you could use any sugar!)this also helped in substituting out the malt powder(simple carb)A number of recipes call for rice syrup or other sweeteners.

Instead of fermented soy powder I used some fermented chickpeas(I am trying my hand at making chickpea "soy" sauce so fished some out of the jar to use.) If you don't have any fermented chickpea's laying around(LOL)I am wondering if a little live miso might get things rolling?

Instead of malt powder I used regular old chickpea(besan)flour.


It also includes korean red pepper powder, easily found at most asian markets. You can also grind dried red peppers. Finally you need sweet rice flour and salt.


In a corn free, soy free, gluten free, and chemical free home, these were easily on hand.(well the fermented chickpea's were luck!) So, despite the major change up in what ingredients I used it really turned out delicious.

The Houston morning sunshine helped finish it with a nice darkening. Otherwise the couple months I had it going I left it in a sunny window. I just kept a paper towel tied over the top(lazy to open and close!).

I cut the recipe way way down. Of course now that I tasted it I wish I had made the big batch. This stuff is going on or in everything!


I used the recipe at Maanghi for inspiration- Here is the link directly to the Gochujang recipe


Friday, June 20, 2014

Purple Sweet Potato Pie( dairy-free, corn-free, soy-free, gluten-free, nut-free)




Whenever I see the purple hawaiian yams(also known as Okinawan or purple yam) I cannot resist buying them. I find their flavor to be more mild and sweeter. Which makes them ideal for desserts!

Abby is a HUGE fan of crustless sweet potato pie. Pretty much a crustless pumpkin pie just with sweet potato. Of course we could not resist making a "purple" version, what could possibly be prettier?




3/4 cup granulated sugar
1 teaspoon ground allspice
1/2 teaspoon salt
1/2 teaspoon ground ginger
1/4 teaspoon ground cloves
2 large eggs
1 1/2 cup cooked and mashed purple sweet potato
1 cup plain homemade coconut yogurt

Coconut Whipped cream, (optional)


Directions

Preheat the oven to 350 ( Glass pans needed a lower temp(325) and longer bake.)
Lightly grease bottom of baking pan or glass baking dish.

Place all the ingredients in your blender. I find this works best when you are making your own sweet potato's(vs canned)it will blend it very smooth for a lovely texture.

Pour into your greased pie pan. Bake for aprox 50-60 minutes, or until knife in the center comes out clean.

Cool and then chill. Serve ice cold with a little whipped coconut cream.

Topping: I just used some plain icing in a piping bag to create a lattice.


Wednesday, June 18, 2014

Mast, Mito, EDS, Autism and POTS

These are becoming quite entwined for many patients.


How in the world do you sort out all the symptoms? EDS and MAST? Mito and Autism? Mast and Mito? Or for Some EDS,POTs, Mito and Mast?

If you can take meds that gets easier.

Many MCAS patients respond very well to a combination(has to be a combo for most) of over the counter meds. There are also a lot of prescribed medicines that patients respond very well to as well. They can improve the quality of life remarkably.


You can keep a journal. Each day list your symptoms. Where you have been. What you ate. Who you visited.
Removing "triggers" from your home and diet can be incredibly helpful for many. For Abby us charting her symptoms daily lead us to more easily hunting down foods and other things in her environment etc that were triggering her. Eliminating triggers for Abby is what has provided her with this period of fair stability. Since we still have not figured out why she tolerates zero meds or vitamins, removing triggers has been critical for her. Avoidance of triggers is recommended for all mast patients.


Support Groups- On the various Mast support groups on facebook, EDS support groups and autism support groups you are going to find patients with incredible amounts of knowledge on any given connected disorder.


Finding a Mast Specialist- If you suspect you have MCAS(Mast Cell Activation Syndrome) it is a MUST to find a Mast Specialist that has an interest and good knowledge base in MCAS. There are lots of Mast Specialist who understand Mastocytosis but that doesn't mean they "get" MCAS.


I still am not sure how all these disorders seem to keep crossing over, many of us agree that there is clearly a connection.


Is the mast cells? The collagen? The Mitochondria? Methylation? What caused the issues with all of those? Could it all have the same root cause? Why is becoming so common to have not just 1 but a couple?


Things get more complex when you need a specialist who understands ALL or at least most. A few of the Mito Specialists are learning about MCAS and are becoming better at spotting potential symptoms and making the right referrals. This has thrilled me to no end.

Most MCAS focused Specialists seem to "get" that many of their patients have multiple diagnoses.

I am not as familiar with the EDS community, but so far my impression is that they are an amazing patient population that go out of their way to help other patients. They made the connection between Mast and EDS first.

Autism families rock, plain and simple these families work incredibly hard to gather and share critical information for better care for all Autism families. I have found my friendships with these families to be priceless. These folks are hardcore Thinkers and always willing to brainstorm for solutions.


You need to read. There are more and more websites and blogs popping up over the net with easy to understand basics on MCAS. There are the Mastocytosis societies both in Canada and here in the US that are priceless resources of information.


We don't think the Mast is a primary for Abby, but we know her reactions impact her quality of life more then anything else. MCAS is not curable, but is very treatable for most.


Have patience, just like with Mito, the Mast community is learning and growing. Specialists have different opinions depending the newest research(which is popping up daily) Do your research and try to find one that you suspect will be a good match for you. I find speaking with other patients has been the number 1 way to find the best fit.

Tuesday, June 17, 2014

BREAKING: Justina is going Home!

Beau Berman is reporting that Justina goes home tomorrow!


Sunday, June 15, 2014

What is the Cause?

Since World War II we have introduced over 80,000 chemicals to the daily lives of humans. Could that be it?
Really since World War II raising a family, food and environment have radically changed. I often wonder which of the many changes is most responsible for our epidemic of sick people.



Since the 40's we have introduced a massive and extensive Vaccine campaign. Could that be the cause?


We depend on synthetic vitamins and packaged foods even though we can afford fresh and real food. Could that be the cause?


Our homes are built of chemicals. From the drywall to the pots and pans- Could that be the cause?


Many dump their children into group "education" centers often from 6 weeks old, Could that be the cause?



Our homes are packed on top of one another, our children often only play on chemically treated lawns, Could that be the cause?



Children and their parents load up in the car and inhale exhaust on the road all day, could that be contributing?



Produce grown in chemicals
, sprayed in chemicals, shipped and sprayed some more, Could that be the cause?



Medications
for every ache and pain, most babies get Tylenol before meeting their grandparents for the first time, Could that be it?



We sleep on mattresses covered in flame retardants and wear night clothes saturated in it, Maybe that is the cause?



Perfumes, hair color, perms, shampoos, lotions, room scents, candles, household cleaners
, Could that be it???


What about Pedi's and Mani's?


GMO's Could they be part of this spike in chronic illness?



Ultrasounds, CT scans, Xray's, prenatal vitamins
, these are newer or used far more frequently since WWII as well.


Microwaves, cellphones, computers
, and wifi?



How about unknown disease pathogens? Micro bacteria? Viruses?


Maybe dental work? Few had preventive care in the 40's, 50's but nearly all children get it now...


Is it because babies who in previous generations would have died are now surviving and reproducing genetic mutations?


Then there is the city water, we know fluoride is a poison and some cities around the world including in the US are no longer adding it.


Where do we point the finger?



What did I do wrong? Or my parents? Or my Grandparents?



If ONLY 15 percent of Mito patients have a genetic cause(by the way toxins can cause genetic damage as well) what in the world is making the other 80 percent sick? They are sick, some are dying without a known gene mutation. There will be NO cure until we know the cause.


We know some chemicals cause cancer, why not Mito?

Why the massive and terrifying epidemic of chronic illness in the past 50 years? Drs. would like to think it is because they are doing a better job identifying illness but we all know our family histories and many of us know that until our generation or our children's generation and maybe our parents(depending on age)we had little or very mild histories of these diseases..


Autism, Lupus,Chronic fatigue, Mito, Multiple Chemical Sensitivity, Mast cell disorders, food allergies,cancer..

The CDC estimates 1 in 68 children have autism. When you add all the other spiking illnesses in 1 out of 5(if not more) are suffering a chronic or progressive illness.

This isn't 1714- This is 2014. I could see 1 in 5 in 1714 or heck even in 1970... but in 2014? Why the decline?



I see constant advertising from the big non-profits begging and manipulating for folks to donate money to find CURES...


NONE who are focusing on the Cause.



If we know the cause we can PREVENT the disease.



For 50 years(or longer) the campaign's for CURING cancer have been in the media, schools and hospitals. So far they can only provide treatment that helps many and cures a few and still have not figured out how to prevent it. If they don't know the cause, it is hard to prevent or cure.

The cure isn't going to happen(or not as likely) in our life times. But maybe, just maybe we stand a chance at PREVENTING more from falling ill.



Of course that means less money for the economy from medical sources(hospitals,research,Drs, pharma,medical equipment,insurance,pharmacies) but it would mean more of our children would grow up healthy and be able to work, to contribute to our Country, we would grow the economy just in different vectors.


I cannot fathom this spike in diseases being "naturally occurring".


At this point be it Mito, or Abby's own thing or something else?


I just want to know what caused it.

Tuesday, June 10, 2014

80 percent only have "POSSIBLE" Mito

It was the annual Mito Conference this past weekend.


Kristi Wee's over at Baby(food)steps on facebook took notes and shared throughout the conference. A big thank you Kristi! I was able to feel plugged in and knowing that Kristi is quick on her feet I knew she would catch all those little nuggets of valuable data I love to hear about. She shared just the highlights of the data, enough to keep me entertained via google until the conference gets released.


The one bit of data that I keep repeating in my mind is one shared by Dr. Cohen,


#mito2014 Cohen estimates (in his patient population) 15% primary mitochondrial disease (genetic confirmation) 1% secondary and the rest (over 80%) are "possible" mitochondrial disease


15 percent of patients are primary.

1 percent secondary

and 80 percent "POSSIBLE"


So out of a 100 mito patients 84 of them could possibly have Mito or NOT.


Of course this is in reference to his patient load, but I would think he has a reasonably rounded representation of what most Mito Specialists handle.

By the time a patient ends up in a Mito Specialists office it is likely they have seen many other Specialists who have failed to be able to identify the disease process. So, if we have ruled everything else out, Suspected Mito it is. My question is, have they really ruled everything else out? Probably not. A Mito Specialist is just that, going to focus on Mito. In order to rule out everything else you have to find Specialists who specialize in everything else.


To me, Dr. Cohen's comment was TERRIFIC news. It means you might not have Mito- which is the best news you can get. No one in the right mind wants Mito or jumps to accept it. It about the most awful thing a Dr. can tell you.

Lucky you are if you are part of that 80 percent. Maybe you have another disorder that can be treated and/or cured.


Maybe by next year they will have sorted all those "possible" patients and those patients have found Specialists that might be able to help.

Or, maybe they will have found more definitive ways to diagnose Mito.



No gene, no absolutes, pretty good odds this year we have good reason to keep looking. Actually at 80 percent? We would be irresponsible not to keep looking.

Thursday, June 5, 2014

Just Wearing Down but Just as Determined.

Long week.

I won't rehash the latest appointment for Abby, but it will lead to further testing.


After the appointment Monday we came home and were simply done. Not really so much a physical fatigue, more just so tired of falling down and trying to stand back. It seemed so hopeless that we were ever going to figure out what is truly wrong with Abby. Everything but nothing is tough to define.


In many ways I have become part of the barrier to Abby getting the needed diagnostics.


I am anxious, confrontational, defiant with Drs at this point after years of appointments where it was clear they were unable or unwilling to help her. Then of course my Mighty Data Dump where I see their eye's glazing over or I know they think Abby or I are either making things up or dramatic or something on the nutty spectrum. The data dump is my last defense. I throw out every single symptom over 19 years at rapid fire speed.. the well meaning Dr begins to retreat- of course they do, data dumping is not productive but more like a last ditch survival mode where I know the boat is sinking and trying something even something we logically know won't help becomes more an action of instinct.


Some appointments I just want to strangle Derek. At home, at work he is a leader, he truly is brilliant and honestly far more likable and well spoken then I am. In every environment that we have conquered together he leads, he always knows how to shutdown my data dump- that is except in a Drs. appointment! I know I come across as domineering and difficult(I can be!)but for some reason that is intensified in a Drs. office. Derek seems powerless and I am still not sure what happens that we have developed these odd coping skills in the Drs. office. I think maybe because the majority of the appointments when she was little I dealt with alone. It would be beneficial for him to use his excellent leadership and PC skills but he folds to my panic every single time! :-) I think it is simply my Mom instincts in overdrive- a storm that builds and no one can shutdown.


Over the years I have felt so vulnerable in trying to support Abby and help her. I cannot count the times Drs. blew off her symptoms, or clearly disregarded the impact. They have minimized, ignored, brushed aside and simply disbelieved. Too many times over the years I am the ONLY ONE who believed Abby. I have dealt with feeling as though I have failed her. Though I believe her and see her suffering clearly, because of my inability to play well with others I know her/our concerns have not always gotten her the care she needs.


Granted, "It is What it Is" still holds true for this journey. She is truly unique, I am weird and it is has become the perfect storm. I cannot go back and redo what has already been done.

Derek and I think though that perhaps we/she were heard this last appt. Or maybe humored? Frankly I don't care if it gives us another piece of the puzzle, if it might give us a better idea on how to do our best for Abby, it makes the appointment of value and worth it.

Derek and I are both very "DIY" kind of people. We love figuring out how to make things ourselves. We delight in discovering how to make, build or create what we visualize. From plumbing to cooking we enjoy the discovery. Both of us enjoy fixing and restoring. We have a type of confidence that allows us to be confident and often fearless that anything we could possibly attempt in this life is all something we can do if we are willing to do the research, to study, to experiment and work hard. I guess you could say we are "self-taught". We love the adventure of figuring out all the challenges in our life. Often our solutions are very different from what were the traditional solutions and that makes us even happier.

We cannot "DIY" Abby though and it is the most frustrating thing we have ever faced. We feel so very dependent on others to help her and that is just not something we deal with well. We are fiercely independent. Trying to find Drs. who have the tools we don't have to DIY Abby has become the most challenging aspect of our lives together. We don't trust, we don't have faith at this point. This leads to anger and frustration for a long time for us. Thankfully that has tempered in the last couple years. We have finally cut ourselves some slack that we have not "failed" Abby because we haven't figured her out yet. We certainly get an A for effort. Plus despite our DIY approach to everything in our lives, Medicine is NOT a DIY project. In general, creative problem solving is not part of the formula of healthcare. I guess we just keep hoping we will run into that 1 kindred spirit in the medical profession, the maverick,the thinker, the out of the box thinker, the black sheep. We have found a few over the years and those are the ones who have helped the most. Fact is, Abby is one of a kind, there is not diagnostic criteria that fits her.

So not sure if we accomplished much at this last appointment. It did open the door to new testing which I guess I should call a success. Maybe I am just getting old, but the weight that I carry seems to only get heavier. Maybe I understand better how my own failings perhaps have created delay's in caring for Abby, maybe I am just realizing this might not be some odd easy fix DIY project for the right Dr. Just tuckered.

Maybe being tuckered will slow my data dump? Always a bright side to everything.

Buckling our seat belts, gritting our teeth and hoping the Drs. are willing to do the same.

Despite my slow self awareness, and learned patience, my gut still says, "you need to keep looking."

So far my gut has never lead me astray. So if Abby is ready, here we go.

 
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