Friday, October 18, 2013

Latest update as of October 18, 2013

Well, I had my appointment with my Gastroenterologist today.  I've been working really hard on improving the health of my liver and my overall health, but I found out my numbers were a little bit of a mixed bag this time.  My ALT and AST numbers were a little different, but little enough that it might just be natural fluctuation.  But my ALP was up by about 30.  This isn't so good.  I think a reason for this is how much I've been tapering the Urso.  I really, really hate being on meds- meds that have no end in sight.  And they also make my hair fall out by the HANDFUL every washing.  So I've been tapering at a pretty good rate to try to balance liver health and the rest.  I may have pushed that a bit far recently, so I'll need to bring that back to a level that pushes my liver in the right direction.  It's been nice actually seeing hair growing back! But I take liver over hair...So I need to work on the balance.

All this has me thinking, I trial and error a lot here as a way of trying to get myself into optimum health.  I do this because I feel like I'm forced to take control of it myself.  Most mainstream doctors are all about meds and treating illness, NOT about creating health.  There's a big difference in those mentalities and I haven't felt like I could really find a provider that would embrace health- unless it was a 'hippy' that other people wouldn't respect their suggestions.  I would, since I don't think it it takes a piece of paper with MD on it to really understand the human body and how to help- It takes experience and a DESIRE to understand.  But when you try to plead your case to others, if the person giving the advice doesn't have those two little letters, some people tend to dismiss them.  I do have a few resources that I trust, but honestly I want someone local that I can trust and that I can AFFORD!  So I'm researching.  Looking for my guide in this journey :) I know I will find them, in this of all towns I'm sure...

So before I put up the numbers, I wanted to note the additional numbers I have.  First I added albumin as I have found it is a very good indicator of liver health.  I am in range with this one, but I'd like to work on lowering it since I'm really BARELY in range.  Also, I added protein, it's good, but just keeping it here for tracking.  Also, I added Bili Direct just as another indicator for bili.  And the PT is the Prothrombin Time- this is the time it takes to clot.  As the liver gets sicker, the time to clot takes longer and longer.  So far I've only been getting this checked occasionally, but I've included it to show that my PT is good.

Actually, everything except the ALP is in range.  This is definitely good.  But I am going to focus on trying to get everything better.  I'm hoping my Guide will have some good ideas for me.

Date AST ALT ALP Bili total Bili direct Albumin Protein PT
Normal 5–35 7–56 30–132 0.1–1.3 0–0.3 2.9–5 6–8.4 9.6–12.8
2/20/2012 235 389 937 1.7 - 4.6 8.2

3/6/2012 142 253 633 1.1 0.3 4.4 7.4 10.9
4/16/2012 59 101 194 1 0.3 4.4 7.3

5/14/2012 36 56 160 1 - 4.3 7.2

7/6/2012 31 42 163 1.2 0.3 4.3 6.9

10/2/2012 58 113 221 1.4 0.3 4.5 7.4

1/31/2013 47 72 201 0.9 0.2 4.5 7.4

4/30/2013 36 44 188 1.2 0.3 4.2 7

7/30/2013 36 36 185 1.1 0.3 4.3 7

10/16/2013 32 39 214 0.8 0.2 4.4 7.2 10.8

I hope everyone has a great weekend! I'll update again soon!

Wednesday, September 18, 2013

My routine as of 09/18/2013

I said I would post this last week, sorry for it being late!   I've had people ask what I'm doing to help with my liver and overall health and I decided to write a post about it.

What I do is always evolving.  With new information everyday, I always see room for improvement.  And the fact is, I'm trying to fix something that's broken, so it's kind of trial and error for me.  Prevention is the key!!! This is why I try so hard with my daughter to prevent her from getting to this damaged point.  She's very susceptible to my diseases and to Celiac (see previous posts), so I'm really trying to teach her young what's safe for our bodies....

For now, I can say what I've been doing, but I worked up to these things.  I began with research.  I had a skin autoimmune disease (lichen sclerosis).  The ONLY thing my doctor told me to do was use this steroid ointment that in fact caused as many problems as it supposedly helped.  So I was searching for another way to actually HELP.  Then I was suddenly diagnosed with Stage 2 Primary Biliary Cirrhosis (PBC)- another auto immune disease, this time of the liver.  And I was also having other skin issues- turns out to be Eczema (suspected to also be AI).  All these combined along with major fatigue, I was feeling lost and out of control.  Not controlling your own body down right stinks and I felt like it was falling apart around me.

But I took my health into my own hands.  Many of the 'mainstream' doctors just prescribe a pill that doesn't actually fix anything.  Just lessens symptoms, but may cause other problems - but there's a pill for that as well...And so it goes.  But read my earlier posts on this blog and you will find link after link to studies that show it doesn't have to be this way.  There are doctors out there of both western and eastern medicine that agree that pills are not the answer.  Even highly esteemed graduates of top ivy league universities with an MD know that pills are not the answer.  It's not just a 'hippy' thing anymore.  It's becoming more and more mainstream, I would guess it won't be long before this way of life is not just for those 'radical' people.

Sadly, even once the information reaches the masses, there are, and will, still be people that poo-poo it.  "It's not scientific because it's not a pill, a man-made chemical.  There's no way that NATURE can possibly fix this, or prevent it.  There's no way that eating 'heart healthy' grains is bad for you! It's just not possible that my family doctor doesn't know what's best for me.  It's ridiculous to think that INCURABLE diseases are cured with a healthy lifestyle!  It just doesn't make any sense, and that way of life is too restrictive for me.  I want to be able to eat pizza, Eggo Waffles and Chips Ahoy cookies!  Just make a pill that fixes it so I can have my cake and eat it too."

It doesn't work like that.  That old saying 'You are what you eat' is so true.  If you put junk, chemicals and poison into your body- you will pay the price eventually.  Maybe you won't get liver disease or celiac.  Maybe instead it will slowly hit you over time and you will have dementia in your old age.  Or maybe it will hit you as lupus, or rheumatoid arthritis, or diabetes or any of the other nearly 200 AI diseases out there.  There are studies that have shown major improvement and even CURING of these diseases.  I've talked to a girl here in my city that CURED herself of lupus after years of suffering by making lifestyle changes similar to what I do. It can be done, but it does take commitment.  This is the sticking point for many.  People have flat out told me they'd rather eat how they want and just pay the price later.  And if that's how you feel, then so be it, but make that choice with complete and full information and DO NOT force your choices on another person.  People partially don't change their lifestyle due to way it would 'appear' or the way people might talk about them and their extremist way.  Those people make me sick.  Choosing to eat healthfully is a good thing, no matter what.  Influencing your children to eat healthfully is a good thing, no matter what.

So what am I doing exactly?  And is it helping?

First, I think it is helping A LOT.  I am not so tired anymore and I am busier and more active than I've ever been.  I'm happier than I've been in so many years.  My outlook is positive and I believe I will be the healthiest I've ever been in the next couple of years- despite liver disease.  (And yes, even depression, anger issues and all sorts of mood issues have a strong link to your diet).  My liver tests are much better than they were and even my skin conditions RARELY have flare ups now.  Life is definitely better.  I virtually KNOW that I will not leave my daughter at a young age.  I am not worried that I cannot actively participate in life.  I know that I am a healthy and active mother and partner and I will continue this way for as long as I make it happen.  The key is to keep working hard on this.

"We cannot solve our problems with the same thinking we used when we created them"
----Albert Einstein

My Routine:
Every morning I make a green drink.  It comes out to about 24oz or so.  I blend some combination of the following (all organic):
Big handful of baby spinach or baby kale
aloe vera (juice or freshly cut inner leaf)
whole lime (skin and all!)
frozen berries or peaches (something frozen)
Alcohol Free Milk Thistle extract (very important for the liver)
fresh cilantro or parsley

I also eat an apple nearly everyday- very good for the liver.

I eat A LOT of salad (much of the same veggies in the drink)- sometimes even 2 in a day in addition to the drink.  Squeeze an orange for 'dressing' and get some extra vitamin C.  Fresh fruit and vegetables have to be the primary focus of the meals.  What I've read is that many times AI diseases trigger or are aggravated by vitamin or mineral deficiency- so this is where all the whole, raw foods come into play.

Favorite salad right now:
Baby spinach
uncured prosciutto
orange slices and some squeezed for 'dressing'

sometimes add one or two:
dried cranberries
alfalfa sprouts
carrot shreds

Also, for veggies I cook, they are still very crisp.  Fresh asparagus just to the point of turning bright green is still very crunchy and the taste has developed.  Same for fresh broccoli or green beans.  Over cooked veggies lose so much nutrition.  Also, I don't steam or boil- all the vitamins are lost in the water.  I have waterless cooking pots (really any pot with a tight fitting lid will work).  Heat on low, no seasonings needed or oils or anything.  Just cook till color develops.  Try not to check too often, as natural moisture escapes every time the lid is opened.

I try to be sure my meat and eggs are pasture raised, wild caught, grass-fed: whatever is appropriate for that species.  Corn fed, factory farmed meat is not healthy.  It goes back to 'you are what you eat'- if the animals are eating poorly, so will their meat and eggs provide poor nutrition.

Of course, it's not about being perfect.  Most people stick with an 80/20 rule.  I am probably more like 90/10- While I'm 100% no grains, I do have sugar and other not completely healthy options sometimes...I do make occasional fun treats for my daughter (all grain free of course, but not necessarily super healthy- still healthier than the packaged junk tho!).  Having no fun will lead to wanting of the 'bad' stuff....Can't have that! You can eat healthy and still have a treat that is reasonably within limits.  We do go out to eat sometimes, just try to minimize the damage with good choices.

We absolutely eat no grains.  We limit potatoes, but do have a sweet potato occasionally and very rarely gold/yellow potatoes.  We limit refined sugar. No sodas.  VERY LIMITED juices.  Very limited soy.  We eat some legumes, but not all that much (though we do have peanut butter fairly regularly). Limited dairy (though my daughter tends to have cheese and milk).

I have been told it's too expensive to eat like this, but it's really not.  I get very few items in the inner aisles of the grocery store.  Not buying all those bags and boxes of "food", really opens up the budget for more fresh, whole foods.  Which is what most of my basket ends up being.

Of course food is only 1 aspect of health.  We also need to build a strong body.  So I do some hard workouts every week- like kickboxing, weightlifting, etc.  I also do pilates or yoga regularly to help with flexibility and building the core.  Running is great cardio that I incorporate on a regular basis.  But also, I find places to work in a few minutes here and there.  I bring extra shoes (I normally wear high heels at work) so I can get up and run the stairs a few times throughout the day.  I work on the 4th floor, so this can add up.  Also, our parking garage is 6 stories- that's 12 flights of stairs each way.  I try to do that 3 times a week, 3 trips each time (36 up and 36 down).  It only takes a few minutes each time, but it definitely seems to make a difference on my cardio performance.  Stairs are like jumping rope- you get a lot of bang for your buck time wise, but it requires less coordination!

I know it seems counter-intuitive, but forcing yourself to get up and exercise INCREASES your energy.  AI diseases are so good at zapping our energy, finding ways to increase it is so important.  And when you feel better, it is easier to keep going.  Objects in motion tend to stay in motion...

I also take a lot of vitamins.  My liver doctor helped to work out the doses; PBC especially makes it hard to absorb fat soluble vitamins (A,D,E, and K), so those need to be taken in larger doses.  I also take a lot of Vitamin C and B vitamins.  Additionally PBC puts me at risk of osteoporosis, so I take a lot of calcium.  Lastly, I take Alpha Lipoic Acid, slowly increasing over time.  ALA has actually cured AI liver disease in previous studies!  And I'm also taking Urso...For now.  I will continue to take it until I can have a solid history of my liver being healthy.  I'm only 1.5 years into this PBC journey, so it will take more time.  The good thing is that I only take it about 75% of the time now and already I have some hair regrowth! And my liver numbers continue to improve.

I'm a single mom of a 4 yr old, going to grad school, working full time, have an active social life and I have 3 AI diseases; yet I feel better than I have in years.  I really, really believe so many people could control or cure their chronic illnesses if they just had the right information and then put it to use.  It makes me so sad when I see people suffering and taking pill after pill and not getting any better.  I'm not against medicine, there are definitely times it's needed (especially for acute situations), but chronic diseases are not cured with a pill.  If they were, they wouldn't be chronic. They are managed, some better than others, but no pill will cure a chronic illness.

I hope I've helped those that have asked for my info.  Of course, I'm just one person and I'm not a doctor.  Talk to your doctor.  Get second and third opinions.  Go to alternative medicine doctors.  Read all the studies.  Take what I say with a grain of salt, make an informed choice that's right for you.  I can only just say what's working for me.  If you want more details, please message or comment.  I'll be happy to share!

Friday, August 2, 2013

New Numbers as of July 30, 2013

I had my blood drawn Tuesday.  My numbers are looking even a bit better than last time!

Here's all the stats:
DATE      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
01/31/2013   .9        201        47         72       Gluten Free and Ursodiol
04/30/2013 1.2        188        36         44       GF, Urso, Consistent green drinks&exercise
07/30/2013 1.1        185        36         36       GF, Urso, Consistent green drinks&exercise

 So my numbers are pretty stable, slightly better. I've also added in some Alpha Lipoic Acid and Milk Thistle- both are supposed to help support liver function. I've been slowly incorporating, now that I see things are going well, I will start increasing the amount.
 I also found out that the best indicators of liver health are albumin, bilirubin and prothrombin time (PT). I haven't been tracking exactly my albumin, but I do know on 2/2012 it was 4.6, on 5/14/12 it was 4.3 and this time is was 4.3 - Under 5 is good. So I'm good on that regard.
They didn't do the PT this time, but will next time and I know a previous time it was acceptable, but don't know the number.
My bilirubin is within normal range, but I'd really like to get it lower.

 So I'm still working. I will always be working on this. Even when everything looks normal, I will be working to keep it that way. I won't ever have a time that I can just forget about this, but I am trying to get better about not 'worrying' about it. I am doing all that I know and continually trying to learn more. I will be armed with more information as time goes on.

 I will never take for granted that I know all there is to know about this.
 I will never take for granted my health.

 I will never take for granted Zoe's health.
 As my daughter she has a huge risk for this. Even if it's not prevented, this way of life will be beneficial for her. She will understand what is good for you and what isn't. She will know what it will take to keep herself healthy. She will have to make that decision for herself, but I will do my best to help her and to make it as painless as possible to maintain this sort of life.

 Honestly, eating whole, fresh, unprocessed food and staying fit are technically good advice for everyone! So I hope even those without PBC can pull something of use from my journey as well.

 Have a wonderful weekend everyone!

Wednesday, May 1, 2013

New Bloowork numbers as of May 1, 2013

I had my blood drawn yesterday.  My numbers are looking better!

Here's all the stats:

DATE          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
01/31/2013   0.9            201           47          72       Gluten Free and Ursodiol
04/30/2013   1.2            188           36          44       GF, Urso, Consistent green drinks&exercise

Only the ALP is really out of normal range! (I know AST is one off, but that's pretty close).  I feel like it is really getting better!  I'm super happy about this.  Maybe next time they'll all be normal- or at least the ALP could be closer and the rest in normal.

I am truly feeling like grain free, all the fruit/veggies, whole unprocessed foods, exercise and of course lots of love and support from Zoe and all my family and friends has made a huge difference.  I feel like my story is going so differently from so many on the support boards.  I want to scream it from the rooftops of how to help heal yourself.  Not only are my numbers better, but I FEEL better.  A friend told me my skin looks so healthy, I look rested and I have such a happy disposition.  And it's true.  I feel so good, it is amazing.  

Zoe is so supportive too, she's amazing especially only being 4.  She loves to help me exercise and does yoga with me.  She's also really into picking the healthier foods and deciding what we should have for dinner.  Its' really an awesome thing when such a little person wants to double up on veggies, that she prefers fresh/frozen that has been steamed instead of canned or slathered in unhealthy oils, that she loves to help grow our own food and that she will usually give just about anything at least a try.  I hope these habits (and more) will help her grow into an adult that can make the right decisions for her health.  So many adults let their childhood attachment to junk food rule their decisions, while they disregard their deteriorating health and body.  Especially in her case, her decisions will have such an impact on her health.  All I can do is give her the tools in her arsenal to help her, it will be up to her to make the choice of health.

In so many ways I am feeling very lucky.  If my ex hadn't decided to leave, I wouldn't have started a new job and I wouldn't have gone to the doctor for just a check up (at the suggestion of my new co-worker) and found out I was stage 2 PBC.  I probably wouldn't have found out until it was too late to turn it around because I wouldn't have gone until I was feeling REALLY bad.  If I hadn't had another autoimmune condition first, I wouldn't have already started the research that led me to find the grain connection that is helping to heal all my AI diseases.  And that dominoed into REALLY working toward overall health.  Not focusing on weightloss or superficial goals, but real, true health.  From all that I am clearly making huge changes inside and out.  I'm looking great, but more importantly, I feel TONS better, I have more energy and my attitude toward life is so positive.  I was so distressed at the beginning of all this, mostly because I was so worried about Zoe growing up in a split home, but she's doing good so far and bottom line: A split family is FAR better than watching your mom's health slowly fall apart and ultimately losing her when you're a teenager- which is ENTIRELY possible had it not been caught until my liver was too far gone.  

I will forever be thankful for the luck I've had.  I got a new chance at a longer, happy life to share with my daughter.  I can definitely not be anything but ecstatic about that!

I hope everyone is having a great month!

Sunday, March 3, 2013

It's been a year

So, yesterday made 1 year since I was diagnosed with PBC.  So far so good.  I do have that 'liver pain' sometimes, but all in all I'm doing OK.
I am tired somewhat - especially on days I don't have my green drink.
My hair is still falling out so fast I have no idea how I have any left on my head.  It's crazy thin now.  I am pretty sure it's the meds, though my liver doctor said he's never heard of that being a side effect, but on the PBC support boards EVERYONE says that Urso has their hair falling out pretty badly.  My most recent trick has been to curl it.  It makes it look so much more full that way.  It's been a fun thing to do with Zoe too.  She likes to have curled hair like mommy, so we wear curlers together at bed time. And man, her hair looks super awesome curled.  Love it!

I am doing everything I have found (either through my own research or from the multiple doctors I've talked to about this) to help my liver heal and my immune system stop attacking it:

I take a huge green drink every morning that contains tons of veggies and fruit - Always a combination of lemon/lime, kale/spinach, cucumber, carrots, banana, celery, frozen berries, tomatoes, milk thistle, aloe vera juice - Things that are supposed to help in liver repair / support.  I also eat an apple a few times a week - the pectin is supposed to also support liver function.

I take all the fat soluble vitamins - ADEK - plus calcium and extra C.  My liver doctor said with liver disease it's tough to absorb enough vitamins.  And Osteoporosis is a common side effect of liver disease.  So I take everything he told me plus the extra C since that helps with immune function as well.

I am 100% strict on grain free - this is to hopefully help my immune system so that the attack might stop.

Of course no alcohol. Super minimal coffee and soda (Like 1 coffee a week and maybe 1 soda every couple/few weeks). But I added in lots of green tea, as that's supposed to be good for the body.

I've been working out 5 or 6 days a weeks.  Besides overall health, exercising is another way to get toxins moving - this may be helpful for my liver in multiple ways. Plus it does help increase energy levels.

And tons and tons of water to help flush things out as well.

I REFUSE for liver disease to be the death of me.  I will live to be old and play with my grandkids.  I was diagnosed at 34 - average time to death from diagnosis is 16 years - This. Will. Not. Be. My. Story. I will live well past 50.  I will see Zoe grow to an adult and I will be there for her through it all - AND I will be in good health - NOT bedridden or on disability.

A positive attitude is, IMO, just as big a part of all this as any of the other steps I'm taking.  And I have a very good outlook on this and on life in general.  Life is what you make of it!  I was talking to a friend about how someone had a good attitude about a bad situation and he said "You have the best attitude about things of anyone I've ever met! Life hands you lemons and you say screw the lemonade, I'm making lemon cake!" I said "Grain free of course!" :)

I hope you are able to make lemon cake out of your basket of lemons.  If not, at least try finding one thing about your situation that's good.  If you focus on the good, the bad will just become a small part of your life and eventually you will start to notice it less and less.

In order to carry a positive action, we must develop here a positive vision.
----Dalai lama

Friday, February 1, 2013

Update 02/01/2013

Not much has been going on on the PBC front the last couple months, but since the last update Zoe and I have been very busy otherwise.

We sold our old house, bought a new house, moved and celebrated her birthday and Christmas. It's been super stressful, but rewarding at the same time.

I got my liver numbers tested again yesterday. If you recall last time my numbers had gone up significantly from the time before. This time the numbers are lower than last time, but still not low enough.

What I've been doing right:
Diligently eating grain free
Drinking a large, nutritionally dense green drink every morning
Exercising regularly

What I need to improve on:
I think I've been drinking too much coffee so I've just given up coffee completely and replaced with green tea
I think I should try to limit sugar and salt intake more- both cause inflammation and may be contributing to higher numbers
I've not been diligent about taking my vitamins - need to get better at that.

What I plan on adding:
I've gotten some information regarding naturally improving liver function so I plan to implement some. I've already implemented specific foods that help with the liver (like lemons/limes, avocados, apples, green tea, etc) as often as possible, but I also plan on slowly incorporating things like milk thistle and other herbs and foods that are known to support the liver.

I really want to get this in check and hopefully lower or completely quit my urso. It causes other problems that I am non too thrilled with. I've also been having liver pain pretty often, which the urso does nothing to help. I'm hoping these natural methods will provide these means.

I will get my numbers checked again at the end of April. Fingers crossed they get better!

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

01/31/2013 0.9 201 47 72 Gluten Free and Ursodiol