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!

Wednesday, October 3, 2012

Hit a snag and other updates

Well, I'm a bit bummed.  My numbers have gone up.  I've been really good.  Absolutely zero gluten, low sugar, no alcohol (of course).  Just all really fresh, whole food.  But I'm not giving up.  It's just a set back, but it's not the end of the world.

OK the numbers.  For a consolidated place to look I'm going to put them all here.

Bilirubin ALP AST ALT
Normal .1-1.3 30-132 5-35 7-56
2/20/2012 1.7 937 235 389 Initial
3/6/2012 ?? 633 142 253 Almost 3 wks gluten free
4/16/2012 1 194 59 101 Gluten Free and Ursodiol
5/14/2012 1 160 36 56 Gluten Free and Ursodiol
7/6/2012 1.2 163 31 42 Gluten Free and Ursodiol
10/3/2012 1.4 221 58 113 Gluten Free and Ursodiol

So, for some reason my numbers are a lot higher than they were in July.  This is disconcerting.  I was really expecting to go in and see everything in the normal range.

I will just have to work harder.  I will not be beat by this.  It just needs to motivate me more.  I have been trying to get back to working out (before my pinky toe issues), I think maybe that might help? I don't know, but it's worth a try.

16 years.  That's the average length of time from diagnosis to death.  16 years.  I don't like that idea.  I'd be 50, Zoe 19.  Nope.  I don't accept that. No teenager should have to even consider losing a parent already.

AND it makes me work that much harder for preventing for Zoe.  What if this doesn't cure me but only just extends the time? It makes me double up my efforts for Zoe.  If it can't be cured, prevention must be of the utmost importance.  And PBC, per the info from my doctor, tends to hit the second generation younger than the first (and remember, mother / daughter pairs are the most common familial pairs for this- AND she has a 1,000 fold chance of getting this because she's my kid).  So if it hits her younger, what will it be? I was 34.  30? Younger? And with 16 years? No, I don't like this.  Prevention is the key.  Just as it is in so many things, it is especially in this case.

Plus she has the genes for Celiac disease.  I just have Gluten Intolerance.  PBC is even more common with those with Celiac disease.  The odds are stacking up against her and none of these things have a cure.  Just a treatment in which gluten is removed and meds taken- so why not remove the gluten now - if it will have to go anyway, why not take that chance that it might even prevent these diseases from triggering? I don't have a problem with that.  If there were something out there to do that is completely safe and could prevent a particular disease, I think someone would be crazy not to try it.  I mean, it's not painful or dangerous.  We actually eat healthier than just about everyone I know- so what's not to like about it??

It's hard though.  I'm not the only person with Zoe.  She has influence from many other people, and some of those people don't see the value in prevention- Instead taking the "we'll think about this after she gets sick, until then she should just have fun and eat whatever she wants", but I know in my heart waiting until she's sick will be such a harder road to climb.  It's not fair to have her get diagnosed even younger than me and then have to worry about not even making it to mid-life??

Not eating a piece of toast or a gummy bear seems a lot easier than facing your mortality in your 30's.
Not having that cookie or pasta seems a lot easier that being addicted to it and then being told you can never have it again.
Not having that cake or cracker seems a lot easier than being told you will most likely get a liver transplant in the coming years, and then you have a very good chance of that one being destroyed too because this disease is in your Immune System, not your liver - the liver is just the victim.
Choosing to eat whole, fresh foods like meat, fruits, veggies, seeds and nuts seems a lot easier than finding out you have intestinal cancer from your Celiac disease (which commonly happens along with various liver diseases, thyroid disease, RA, type 1 diabetes, etc, etc).

Call me crazy, but those all seem like easier things.  I have perfected the gluten free alternatives to just about anything you can normally get - and I make them even better with less sugar, whole foods and minimal processing.  I've learned more about cooking from scratch than I ever knew and I can say- it makes complete sense.  No wonder we're all so sick - the crud in the boxes and bags in the store is just appalling.

Anyway, enough of that for now.  On a good note- Zoe's dad and I toured a school today and have decided we really like it.  It's Montessori style learning, which seems like it might be right up Zoe's alley.  They foster learning with each of the kids at their own pace.  And since Zoe always seems so far ahead, this will be great for keeping her engaged.  It's a small school, which feels like a good thing.  It's very clean and they do all kinds of extra things like dance, spanish, music, trips to the library and to the nursing home.  All things we think will be really good for Zoe. They even have times that the parents get to be involved in various school activities, so this seems like it will be great for all of us.  She will start in a couple of weeks.  Costs an arm and a leg to get it started, but after that the price isn't too much more than I'm paying now.  So that's a good thing! Some places that also seemed really good were $1200+ a month.  I just can't afford that right now.  Hopefully by the time she's completed this school (it goes through first grade) there will be another option within the budget for her.  We'll have to cross that bridge when we get to it, but for now we think she will really like this school.

One last item to mention- Friday is my divorce mediation.  It's not something I'm looking forward to, that's for sure, but it will be good just to get this all done.  For the longest time I just wanted to believe it wasn't going to happen, that some how things would heal, but I know that's not true.  I know it's not possible.  Once someone has decided, they have decided I guess.  But I guess it's been long enough now that I have accepted it - for me anyway, I'm still having trouble with it for Zoe to have to grow up this way.  But I AM ready for it just to be done, one way or the other.  Living in limbo stinks.  I don't want to be divorced, but I think I hate being 'separated' even more - it's just hard to be in-between...Like balancing on a wire 10 stories up, any wrong move will send you crashing down.  Yea, I'm ready just to get to the other side - even if it's not the side I wanted.  I always say, things happen for a reason, just the way they were supposed to.  So I've already found many reasons to be thankful my life has gone down this unexpected path.  I try not to focus on the negatives, and just think about those positives. I know it will be tough for Zoe, but I just keep trying to help her see the good things about her life - not to minimize her feelings about the bad things, but just to help her see there are lots of good things too.  She and I both benefit from this attitude!

Well, I think that about covers it for now!