Friday, October 26, 2012

PBC update October 26, 2012

First I just want to share a really good video that talks about gluten and children.  This is actually part 2 of a series.  Part 1 is more focused on infancy.  It's very informative. It gets a little static-y, but it's still good info.

On my front, I have been having quite a bit of liver pain lately.  I don't know whats up with that.  It's not debilitating or anything, but it's random sharp pains that are sometimes quite frequent.

Man I am just so sad for Zoe.  The thought that she'll get this, or celiac or some other auto immune disease is just so frustrating.  There's just so many complications with these diseases, in addition to the disease itself.

High risk of damage and/or cancer to just about every organ in the body.
Osteoporosis: I have to get a bone scan done every 2 years because people with auto immune diseases are at a very high risk of severe bone loss.
Chronic pain in just about any part of your body.

The list goes on and on and there is no cure for any of it.  This diet helps to slow progress or may even help to prevent future damage, but there is no cure.  There is no fix.  Once the immune system is triggered, there is no going back. What's done is done.  That is what makes me the saddest for Zoe.  When she is 15, 20, 30 - however old she might be when triggered- how will we look at her and say to her that we knew and didn't TRY to prevent?  I will be able to look at her.  I am doing everything in my power and I will continue to do so as long as there is breath in my body.  But not everyone in her life cares about this, and there's where the problem lies.  Prevention? Ha.  Is there a guarantee it will prevent? No? Oh, then I will not try.

That is equivalent to:

Does a seatbelt guarantee I will survive a car crash? No? Then I won't wear it. ::In fact, my mom was in an accident before seatbelts were mandatory and had she been wearing it, she would have been decapitated.  But does she wear one now? Yes.  Should we all wear one? Yes. Why? Because, MOST of the time, they are helpful, but no, there are no guarantees.
Does sunblock guarantee I will not get skin cancer? No? Then I won't wear it. ::In fact, lots of people get cancerous spots even if they diligently wear sun block, yet we do it anyway because there is a CHANCE it could help, or at least lessen the severity.
Does doing my best at whatever I am doing guarantee I will be successful? No? Then I won't even try.  ::In fact, we FAIL most of the time, and success usually only comes after MANY failures.

Perfection and guarantees are not feasible in this life in most instances.  We all live by odds and chances.  The only thing that almost always guarantees failure is NOT DOING ANYTHING AT ALL.  Other than that, it is left up to chances and odds.  We can, and should, do things to put the odds in our favor, but there is never a guarantee.

Not trying to help Zoe not get sick just because YOU have sentimental value to a particular food is down right irresponsible.  She DESERVES a happy, healthy life.  She DESERVES the chance to not have to worry about when her liver will fail or if she will have severe bone loss before she is even middle aged or any other of the myriad of problems that can come with this.  She DESERVES the chance to not have to worry about whether or not she will grow old.  She DESERVES the chance to look at food with the attitude of it being sustenance, instead of addiction or sentimentality.  She DESERVES our commitment to her health.

Sure, just eating the regular birthday cake at a party is easier.  Maybe getting to eat crackers and cookies off the shelf is easier, and some might label as fun memories.  BUT she has already demonstrated that she truly loves the gluten free, homemade, non-junk food version of many of those foods, with which she can have fun memories just as easily.  Yes, she likes some of the regular versions too, but why not just go with the version that is safer for her??

She didn't ask for this, I didn't ask for this FOR her, it just is.  And honestly, it's a fine and easy thing to change the way we eat in this way.  It's really not hard at all.  MUCH easier that breaking the addiction to stupid junk food.  And DEFINITELY much easier than fighting a disease.  No there is no guarantee that the disease will not trigger EVEN with the diet changes now, but there is a CHANCE.  Having a chance is worth it.  Doing something is better than just throwing caution to the wind and not caring till you are sick.  In this day and age, that's like saying: "I'll worry about watching my cholesterol AFTER I have my heart attack" "I'll worry about being morbidly obese AFTER I have caused permanent damage to my joints and I have diabetes" "I'll worry about wearing a helmet AFTER I have my motorcycle accident", so on and so forth.  It's insane and archaic.  Once upon a time those were things that people did, but in today's world we know so much more and it's plain ridiculous to ignore valuable information like this.   And, honestly, if something does trigger, at least she wouldn't have that emotional connection with things she can't eat...

But, unfortunately, this IS what people who 'care' for her think.  This IS the method they are using.  "Enjoy life and eat like you haven't a care in the world! Worry about it when you are diagnosed with an incurable disease that will cause you to eat this way anyway.  Oh yea, and I KNEW you had a very good risk this would happen and I chose to feed you lies and junk food because I cared too much about MY food issues to see how my choices could affect you".

Yea, that's how it's going.  And I try very hard to stop worrying about it.  I try hard to convince myself that at least she's not eating that stuff when she's with me, but that's like saying "Well if I put sunblock on her, all that sun she's getting when she's not with me won't cause her cancer"  "Well if I make her wear a helmet, those times that she's not wearing one will be canceled out", etc.  It doesn't work that way.  But I still try my best, if for no other reason than to TRY to help shape her view of what is safe and what isn't for her.  Or maybe, just maybe, it might SLOWDOWN the time till something is triggered.  Maybe she'll get a few extra years until this cannot be ignored.  It will be harder for her then.  She will have addictions and emotional connections with things she will have to give up.  She will have irreparable damage to contend with.  She will have to come to terms with having a completely different way of life, as opposed to just continuing on in the way she had been.

Think about it - If you got diagnosed with a disease and the treatment was to eat a particular diet, and that's what you already do, you will probably think "Ok, that's cool, I'm used to it".  OR if it is a complete overhaul you'll probably focus instead on what you CAN'T have "I have to give up THAT? I cant' have THAT anymore??!".  Big difference of perspective and we have all heard the saying "A situation is 10% the situation and 90% how we react to it".

Well, anyway, that's not something I can prevent.  I can be sad for her, but ultimately it will just be something she will have to deal with. People can either make it harder or easier on her.  I can only do what I can do...

Ugh, I always get so passionate about this.  I can't help it - she's such an awesome person, I want the very best for her.

It's Friday! Have a great weekend! I get to spend it with Zoe so that makes me happy!

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