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.

Monday, December 3, 2012

My Opinions, and our Journey.

When we entered the Mito World a couple years ago, we were completely and totally overwhelmed.(Shocked, freaked, shook up..)we really thought that eventually if we pushed, the Drs. would find some weird easily treated disease and our beloved Abby would finally be normal- but we found "THE DEPLETION."

The first thing I did was go searching for patient stories. You might be able to relate to me on the fact that generally, the patient or the patient's family can give you a much better perspective on life with "Mito". The Drs.(if they are good) will admit they don't know what the outcomes are- the statistics change, huge variables, secondary or primary all these things make Mito IMPOSSIBLE to have a crystal ball to proclaim a prognosis.(At least right now) My opinion is, even with a genetic diagnosis, if your Dr. gives you a firm and grim prognosis, you might want a second opinion- just my 2 cents.

I started reading blogs. I was horrified. It is a miserable and terrible disease. After about 20 different family stories I started to lose hope. The ravages this disease did to these little bodies. I figured I did not find many teen or adult stories because odds were if they were that sick at age 5 they just did not make it to their teen years, and in truth some don't. But most Do! There are adults now who have always been "not normal" and at age 50,60 or 80 are just being diagnosed because they had been blown off their entire lives- cause they weren't sick enough.

So I started reading the research on google. I know, I know- big mistake. When you google "Mitochondrial Depletion Syndrome" guess what you find? Really crappy news. It took months before I even found that there are multiple types of depletions and that adults can have a depletion. That they can be secondary. That only a few types are going to shorten your life no matter what you do.

So here we were with a very sick teen who was getting sicker and sicker. Who had been very ill as a toddler and baby. I was TERRIFIED that her life was going to be shortened or that she might develop cognitive issues.

That was 2 years ago. I sat on my pity pot for awhile, as did Abby. But, you know what, she got better as a toddler, which in the Mito world is referred to as a "bounce" or "stabilizing." Why couldn't she do it again? At this point I had learned from Abby's good Drs. that Mito medicine was evolving, that in our case no answers meant no prognosis(no one with mito has a set prognosis in MY opinion-just saying), and no prognosis leaves a TON of room for Hope.

I started reading again. Asking questions. Learning that more people with Mito out there lead close to normal lives then die from it. The blogs that I found though tragic and sad and true, were not the majority. Those who have more mild versions of Mito don't participate in groups. Don't post blogs. I understand why now. We don't fit. Our kids or the patient doesn't have to deal with lines, tubes,constant ICU hospital stays so I guess those other parents just don't relate to us. When your child has a mild form of mito you have your very own type of hell that those who are more profoundly affected cannot relate to because their hell is so different then ours.

Our kids often look healthy. They often attend school or sports( so Abby is more then mild, but still) . We tried to deal with Specialists who when you say "Mito" they want to jam a tube in or follow some set "Protocol.". They want you to run your kid in constantly to check their hearts, livers, and brains when common sense says no need to to go in(if there are no symptoms in those organs to begin with).. These very specialists who say, "Mito is disease of energy" seem to think that my child who has no energy to brush her teeth has all the energy in the world(as do I which I don't) to handle sitting in hospital and Dr office waiting rooms all day- that doesn't make any sense does it? I started thinking that these Specialist really don't know much about Mito do they or at least the "treatment" doesn't fit the header right?

My perspective on Mito is mine and Abby's(who edits me). We grew weary of not finding any perspective but the Mito World one.

Abby got better once, we CAN make her better again. We believe that no "pain no gain". FOR ABBY a tube for comfort is not an option even if we could find a safe formula- because it would make it even HARDER to get better. FOR ABBY. My husbands family has Huntington's disease. We have seen a human being kept alive in hideous pain, with their brain gone to mush, to simply keep them alive, not something we want to ever have to decide for our baby. She will beat it again. The tube for her would have slowed her down and made her sicker since there are NO safe supplemental formula's for Abby's particular allergies. Doing it the "Abby" way has begun to pay off. We have a great Mito Specialist that respects and supports our different and so far fruitful approach.

I am a hard ass about American's pulling their own weight- period. Like the other million or 4 million or 20 million American's out there, no disease entitles anyone to taxpayer dollars, unless I decide to become a socialist down the road, I will stand by that. In no other Country do you have the ability to improve your life the way we can, being sick doesn't entitle you to crap. If you have the means to care for yourself or your children you should. Believe me, I know it sucks- if Abby and Sara weren't sickly- we would be millionaires- but life sucks - get over it and take care of yourself if you can. Save the programs of last resort for those that truly need it(we have friends who need it and cannot get it because a few families who don't need it take it anyway, that burns me), your taxes would not be as high if less used the programs.

In the MILD population we talk among ourselves. We talk a lot, probably more then we should and we gossip, and we share rumors(The profoundly affected are no saints either). I post those TOPICS that come up frequently here because I am SICK and TIRED of everyone being too scared to express that they have a different opinion then the MITO CULTURE currently dictates.

1) We spent 15 years trying to help Abby "fit in" to the normal population- never worked. Then we tried to "fit in" to the Mito world and again felt like we were walking around with aliens. Maybe I am the only one out there that feels that way, but I post my feelings here to share "OUR perspective."(I have gotten plenty of thank you's and it feels terrific that we are helping.)

2)CPS- CPS does a lot of good things, and they do a lot of bad things. Why not talk about what they do wrong? Why must it be a secret? Problems are not solved if NO ONE admits it is a problem.

3) Drs- A few Drs. suck. They are horrible and should NEVER spend 1 single minute with a patient. Many Drs. know ZERO about Mito and deny it exists. Some Mito Drs. pick and chose their patients. Some Mito Drs. do a really lousy job treating mild patients while some do a terrible job treating severe. Some Drs. are amazing and some are amazing when matched up to the right patient- Should we all suffer through the bad, good and ugly and waste all that precious energy or should we share our experiences good or bad so each patient can find the best fit with the least amount of energy? If we don't share the bad experiences then some other poor patient is going to go through what we went through and waste their energy too. Not COOL.

4)I am not PC. Nor will I ever be. If it is on my mind I am not one to mince words. I generally try to be a kind person. When I express what has worked for us, I AM NOT suggesting you do it my way or my way is the only way- what I am saying is there are far more ways to deal with Mito then the Mito Protocol or what all the other Mito patients are doing. If your gut says your kid needs a tube to be healthy- go get one! Fight for it. If your gut says your kid doesn't? Then be strong and find a BETTER WAY.

5)There are bad people. There are people who take advantage. I have heard and seen Mito families who make some very bad decisions that hurt other families or contribute to the stigma of having "Mito". They need to stop taking advantage of their child's poor health - it is wrong and it makes the rest of the world think Mito is nothing but parents faking their kids illnesses. It pisses me off since for 15 years we begged a zillion Drs. to help us figure out why Abby wasn't normal- we finally know why and those few bad apples are giving Mito a bad stigma, and after 15 years of the stigma of being a pushing parent with a lazy kid because she had no diagnosis- I don't need or want it. The rest of the Mito Community needs to call them out- if you don't then you are enabling their behavior-

6)Mito Drs. often push families to enroll their children in school. Give them a push , more therapies,more "socialization". IF that works for your family- Good for you. It doesn't work for Abby. When she goes to school she gets sick. Heck, right now I cannot get her out of the house without a crash. Going to school and pushing herself wrecked her kidneys. She was too tired to socialize with any of the teens. She was too tired to talk with her family. It made her sick and in pain and heart broken. She insisted on going because the idiot Dr. told her she wasn't trying hard enough- she tried so hard she destroyed her kidneys- sorry, no school is worth giving up organs in her body, in OUR Opinion. So we homeschooled, put her in early College, let her stay home while so ill- our kid, our choice. We lead a private and quiet lifestyle with Abby to support her. When I get house crazy, I remind myself how hard it must be for Abby and I find something to do around here. We have opted not to have excessive germs brought into our house daily. We chose to be home as much as we can to support her so she never feels as isolated or alienated as she did sick and tired at school to the point socialization was impossible. Because "we think" it is the best thing for Abby. No parent should ever be made to feel that you cannot be normal, healthy or happy without sending your kid to daycare, public school. Surely, there are other families out there that prefer our approach because it WORKS for them not because it works for us. I also know there are kids out there that would rather get sick constantly because they are social butterflies and crashing is worth it- for us, it is not worth it- because Abby is not happy when she is sick or tired. To each his own, and damn the Dr. that says differently or family or Dr. that judges me nuts for standing on my head to do everything for my children.

7)Mito is not a "primary" Mito until the fat lady sings(genetics)Abby is stuck with her depletion diagnosis, but without a gene we treat it like a secondary to an unknown primary(thinking mast this year.). I have met more violently ill families who have NO confirmed gene vs those with a gene confirmed many of who are more mild. Mito is Mito is Mito. Some may be lucky and find a treatable primary disease that can "fix" their mito disease. Some do not. There are millions of rare diseases out there, some identified, many not. At the end of the day- Mito with a gene confirmed or not sucks. Be freakin grateful if they cannot find a gene- because that means they might find something treatable- NO ONE wants Mito. Quit trying to decide whether someone "really has" Mito- Abby's symptoms are weird as cat shit- she doesn't have a tube, nor do we take her to the hospital - she is still sick as shit and stuck at home- she has some weird kidney disease, she get sick when she leaves the house. Just because she is not sick like your child doesn't mean she doesn't have a depletion- GROW UP. It has been a nightmare for years to explain what is wrong with Abby- Mito is a vast spectrum of symptoms- just because I don't run her to the dr. daily, weekly or monthly, or don't take her to the ER for a fever or she doesn't have seizures or doesn't have a tube or doesn't do PT, OT ,SPeech or doesn't do orthotics or doesn't follow the stinking protocol- doesn't mean Abby isn't suffering just like you and yours.

8) Abby has her own bank account, facebook, paypal etc and has since she was too young to have them. Mito doesn't define her, it simply has changed how she does things. You are only disabled if you chose to be. When Abby turns 18 she will make her medical decisions. She will decide whether to try to work, or finish college or not. We give her every bit of support to be an individual - she is different- so what? I will be thrilled to continue doing what I have done for her, or more if needed to simply see her smile- that is why I do it.

9) I write what I do because I felt alone. I am "unique" We are "stinky cheese." Maybe it was growing up in the Pacific NW, or leaving my home at 14 or knowing I would be with Derek for the rest of my life within 5 minutes of meeting him when I turned 16- but I have my own way of doing things. They seem to be different then many of the more vocal parents in the Mito world- I enjoy those vocal parents- we need them. I felt it was important to share our journey with Abby because we seem to see and do things differently then the current mito culture dictates.

We need cheerleaders, debate team, athletes, science club, chess club, loners, thinker and dreamers- we don't need the high school mentality. I want my peer group to have a sprinkle of everyone! Without your point of view mine would be pointless. I love cheerleaders! You make my world brighter, you make me smile, you serve an important position in the world. I am not a cheerleader. Not full of sunshine- and you need me, you don't have to like me, but you need me too.

10) We share Abby's allergy issue because NO Dr. believes that any of her issues could be from allergies- but if that is the case, why is she getting better without? Even the Allergists say she is too sick and it cannot be "just" her allergies causing it. (which is the basis for our new Mast cell disease journey) Yes, we have chosen a unique and time consuming journey. But think about it, this is what worked to avoid getting worse as a toddler for her. We had a fab allergist who said "he had seen Abby's before." So it works for Abby. IT isn't easy and at times I wonder if I am absolutely totally insane to blow off all that modern medicine junk- maybe I am. But, it works for Abby. So it is worth it, and really chickpea tofu tastes gobs better then soy. We have tried a lot of stuff over the years but I have been a critic of trying the "hippy food" movement I always figured that it wasn't the food avoidance that helped her as a toddler, but believed the Neurologists who said she had a undefined congenital myopathy and that she outgrew it. Our Drs. always said, "no way food could make her this sick" No Dr. ever prescribed avoiding vitamins- so therefore if a Dr. did not recommend it, it had to be Fake! Nope. FOR ABBY not eating junk food, chemically created foods, and allergens has saved her life. I hate to admit it. I want twinkies,pizza and cheeseburgers- but they make her very sick- if there was a special protocol written individually for Abby by a Dr. it would advise- "NEVER prescribe any top 10 allergen for this patient. NEVER feed this patient red meat or high fiber. NEVER feed fortified foods or preservatives. Fact of the matter is, for Abby and her special unique brand of a depletion, those hippies are saving her life. I think it would be criminal for me NOT to Share that simply eating clean foods has stopped the disease process for now. What if you found out that your baby might have lived better or longer if you simply gave up your pizza fix? Wouldn't you be ticked to find out I knew this, but did not share?

I write this blog for Abby and I above all else. I also write it because believe it or not, there are others like us out there.. who don't fit in the Mito World or Normal World. I hope they run across this blog, when they feel like we did- alienated from a community that should understand her unique journey above all else- Mito is the most individual disease process out there. But, apparently I am a wee too different in my approach to avoid massive critics.

Vaccines, charity abuse, CPS, bad Drs, foods, energy, Mito Culture- we all live it, why not talk about it?

Please note, A few Mito families have posted sharing their opinion which is often very different then mine- I am always pleased to post opinions. I do get "hate" mail from anonymous sources- those I don't post. I have my email posted above, if you want a private email conversation feel free to write. If I am hurting Abby by sharing what we are doing for her which is working today, I can take it, and I welcome it. My goal is to do everything in my power to kick Mito out of her life. If you want to make sure I clarify something to protect your way of doing something and you are not being ugly toward me or any other specific target- please feel free.

I don't do this to hurt anyone, I do this for me. For Abby. I do this because if there is some family out there that cannot find support in the Mito Community, or is terrified of all the stories of progression, tubes and endless trips to the Dr I want them to know that there are some patients that don't need all of that and in fact, some do better without.

So many families do a fab job sharing about the torture of constant life threatening episodes, or what tests our kids are forced to endure- they do a great job and you don't need me to share that again do you? My heart is torn watching and reading what so many profoundly affected children are dealing with to stay alive daily- We are kind of boring on our day to day stuff, being more on the mild spectrum, so I fill it with our funky allergen free /low histamine food we create- and by sharing our perspective. Or my very opinionated and NOT PC thoughts. :-)

I would love to see more blogs and more honest opinions on the hot topics. Some have done so. One family is very pro vaccine- which is the opposite of what I am learning, but she actually helps focus and research more and has more then ever cemented the research in my mind that vaccines are far more dangerous to Mito patients then others. Or families that do a great job of trying to promote fund raisers.. or support groups- lots of room for more of us with different perspectives still. The more we share, the more we learn, sometimes things we resent learning.

In closing, I am going to continue to post and share our story because so many authorities and sufferer's alike in the Mito community seem to take the position that there is a very limited protocol for dealing with this disease. What if that same mentality was taken with a disease like Cancer? I plan to continue to challenge the community to think outside of the box, and to consider every possible angle in treating and possibly even curing this horrible disease. If others had not done that with cancer, where would we be today? And if you don't agree with something I post, either take me up on my offer to exchange ideas in a respectful way that we can all benefit from, or just do what you do when you don't like the show and "Change the Channel."


Anonymous said...

Just wanted to say thank you for this and all your posts. I found your blog a few months ago, and find myself checking back often because you're so good at putting into words the things I think, believe, have experienced, etc. It's nice to find someone I can relate to, because we are definitely also caught in the "not of this camp" but "not really in that camp" predicament also...it gets lonely!!!

Laura said...

Dear Diane,

As you know we are caught in Camp Limbo too! Autism, but nearly recovered, Mito, but not severe as far as we know. On the outside, my son looks so physically fit, plays sports, goes ot school, etc...But just the last few weeks we have had lots of activities and sleep has been sacrificed, resulting in stomach pain again. I am now putting two and two together - when he is running low on energy, his gastric system does not work optimally. He stayed home from school yesterday, sleeping till nearly noon. By late in the day, I could see that he was recovering and brightening up.
Thanks for all your postings. I find them educational, touching, funny, and full of courage to give your daughters the best life possible. They brighten my day and make me feel connected.

Diane said...

Oh Laura- you are part of the solution- you sharing your journey with me gives me courage, strength and especially inspiration! When you and I share our journeys with each other, I no longer feel so alone. Biggest hugs!

Circus of 6 said...

Diane, how *dare* you have an opinion contrary to someone else! ;) You know we are in the same boat of in the middle and refusal to subject our kids to the whim of any Dr. You're an awesome mama and if anyone says different, they are grossly mislead. <3

Diane said...

Back at ya Jamie!!!! Us opinionated Mom's need to stick together!! LOL Hugs!!!!!!

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