My Journey TO Health

I have decided...

2008-10-24T15:04:00.000-07:00

to LIVE, really live! Despite the fact I had a lapse in judgement and drank too much (jeez, just one time in 11 yrs...but really, really over did it), have been stressed beyond my mental capacity, have fallen off of the gym wagon and am now having re-occurring health challenges...I decided I do want to live, but not just live...really, really LIVE.

I want to be strong, beautiful, healthy, loving, happy (maybe, just maybe, even joyful ;0) I want to finally own & ride a motorcycle (okay..could be unhealthy...but think of all the fresh air!), I want to do some light body building, I want to show my kids what the opposite of my lives with them has been in the health realm...show them true health despite all circumstances & environmental factors. We make choices.

Now I am not the least healthy person in the world by any close race, I just see that I choose to live a mediocre life as far as choices for or against my health. It is all by default and living reactively rather than proactively or responsively.

That said...I am starting my weight loss goals up again. I went from 192 before last summer to 187 at the beginning of the summer, to 176 about a month ago (and it has stuck! thank you weight bearing exercises!). Here I am at 176 and my goal is 166 by the end of the year.

I am ready.

Wheat-Free Hurdles

2008-06-10T15:01:00.000-07:00

So, as with any life style change, I am having major hurdles. You would think that with prices for bread going up, I would find even more reasons to ditch the wheat. Instead I go towards it with even more gusto...donuts, toasted bread snacks, pasta, tortillas, you name it! Did I mention that even Emergen-C has wheat in it??? So, along with that, I am going to make things even more improbable for me, and take on Weight Watchers again.

I know I will feel better, my body is screaming for change. When, that is the question. How does one do it when all their ducks are just not lining up and complying with the brain's desire? So, for now, one thought closer to the starting gates!

Not Wheat Free YET

2008-05-29T11:37:00.001-07:00

I had a bit of a hiccup! I had no wheat-free altnernatives in the house and was starving! Not only did I have wheat, but dairy too (a quesidilla). So, planning a meal plan for the next two weeks and then going shopping for what I will need for my first 2 weeks of this wheat-free excursion.

I can't wait to lose the weight, upset stomach and inflammation!

Going Wheat Free!

2008-05-23T23:11:00.000-07:00

I am taking the plunge, Starting on Sunday (and not tomorrow because I need to prepare for this, oh, and I am going to a Wedding/Potluck), I am going wheat-free for 21 days. I know this won't be an easy task, but I have great feelings that this will be very healing for my gut and total body. Wheat is not the great evil, that would be dairy, but it is sure close. I am excited to explore other grains with gusto! Label reading is a must! Did you know that even Emergen-C has wheat in it??? What's up with that?

I will log my journey as I go. Also, I am eventually going to go raw veggie this summer for a bit too. No, this has nothing to do with Oprah, although I missed that announcement because I wasn't watching that show (see, I miss some here and there!), this has been a long time coming for me. My vegan newsletter I get actually told me of Oprah doing this for 21 days, so I think it is awesome she is going to be totally candid about her journey. I talked to my chiropractor about my inflammation and muscles being so stiff and locked up for so many months now, and he recommended I follow my desire to go with it.

Will blog as I go!

MRCP & Results

2008-05-01T17:27:00.000-07:00

I had my MRCP/MRI type deal. It was actually a couple of weeks ago and I got my results back pretty quickly! I am happy and disappointed at the same time. While the tests came back normal and I am not dying of anything (yeah!!!), I still have unknown pain that flairs up every so often, and is "unlabeled" (or labeled as unknown). According to this test, my liver looks normal. The Dr. basically said to go to OHSU for a second opinion (my last second opinion from them cost $75 AFTER insurance covered it...all for just looking at my test results). I told him no, I will just sit for a while after doing all these tests, and see what happens in a few months.

I have a follow up appt. in July, do my blood work in June before my appt. and we will see if my liver panel went up or down. If down...I will continue to make positive changes in my life. If up, well then off to OHSU for a 2nd opinion and for an appt. with a liver specialist. I still have a hard time with the fact that for years now I have these "flare ups" of random things and then they just disappear, totally! I guess we'll know more after the next flare up, and just hope that it isn't too bad of whatever flares up next? Going the healthy positive route, I can only hope that I get healthier overall and less flare ups, because I know the foods I eat (they aren't that bad actually) do create inflammation in my body so bad sometimes, for weeks, that my back and hips and legs and torso are just stiff from pain and swelling. All processed through the liver? One can only guess, and I am done with research for now. Just guessing games online and at the Dr's office. Just life now!

I am disappointed it wasn't something treatable, so I would KNOW nothing worse is wrong with me, so my pain would go away and so all this money and time spent wasn't in total vain.

For now, eating healthier, exercise, abandoning caffeine, fats & sweets, getting more sleep, positive thinking, happiness, meeting with my Chiropractor/Nutritional Consultant and taking Tylenol when the pain gets really bad should suffice! But isn't that the prescription for everyone really? Just basic good healthy habits leads to a good life. Jeez, and I spent all those thousands and thousands (or owe I should say) to find out that gem?

Mild Focal Acute Cholangitis

2008-04-02T09:01:00.001-07:00

My Gasto, Dr. Em, says he isn't sure it is PBC now, or even PCS (which the name of the "possible" diagnosis is in the PCS description, but apparently not it?). Basically, I am in the "early stages" of inflammation of the bile ducts. My tests/biopsy was sent up to OHSU now to be reviewed and will know more in 2 weeks. As much as I want to know more, understand what exactly IT is, I appreciate that Dr. Em doesn't know and is getting another opinion, instead of bluffing his way through it for more money.

I have all the early symptoms of PBC/PCS (similar symptoms, very different outcomes in the end), and will just follow along w/ the dietary changes most PBCers make. They are common sense changes, low sodium, low fat, healthy & fresh fruits & veggies, drink lots of water, exercise...all the stuff we know we are supposed to do already!

The best outcome would be an infection that isn't showing many symptoms and taking a lot of antibiotics to get rid of it out of my body, and all will be good (hopefully). The worst outcome it seems is being diagnosed w/ one of the above, in which medication will be dolled out to slow damage.

Who knew something could go wrong w/ bile ducts! There are funny names for some too, the sphincter of Oddi, Ampulla Vader...makes you feel the "force" within you, haha.

So, NO CANCER, my ultimate fear! Yeah!

Results are in...

2008-04-01T14:28:00.000-07:00

and they are sitting on my Dr's desk, since early this morning! I have called twice already, but he has a bunch of appointments and procedures today. Ugh. I hope he isn't planning reading them "after hours" and getting back to me tonight, or worse yet, tomorrow! I will call again, soon, just to keep the squeaky wheel effect going.

The nurse said she doesn't know how to read them, so he has to interpret them and take notes, and then he or she will call.

And so I wait, for my fate (thank goodness it is sunny and I am feeling up today!).

Post-Liver Biopsy

2008-03-31T08:47:00.000-07:00

I have been trying to get the motivation to sit myself down and write, but either have been in pain, been really busy with life & family to forget the pain, or worrying myself sick.

Let's just say that it HURT. Painful, very painful, and I have a very high threshold for pain (4 natural & painful births). Thank goodness for sedation, vicadin & fentenol. I still have pain, although I am not supposed to, but learning "supposed to" is all varying on a personal level.

No, I didn't look at the needle-contraption. Normally, that is something I want to watch. I opted to be sedated, on purpose. It was a needle-like-mouse-trap thingy that pulls parts of your liver into a compartment on the needle case. Hearing all about it was enough for me, Nuff said.

We are playing the waiting game now, waiting until the end of the week to find out my sentence, er, diagnosis. I have been almost in tears several times now. After reading a post on a PBCers yahoogroups, someone was addressing some fears of the newbies (or newly diagnosed). Here is their message...

Welcome to those new to the Digest and new to PBC. We all know how scared you are feeling and the many questions you may have. The PBCers.org website has loads of info that you may want to read. Everyone experiences PBC differently BUT a majority of us were diagnosed over 10 years ago and are doing well. I can remember the absolute horrible fatigue before URSO or URSO FORTE...it does recur but not nearly as often as it once did. Like most doctors will tell you...you will probably die of something else than PBC...I am not making light of this disease but want you to know that it isn't always the end of the road. One good thing it did for me...I quit smoking almost immediately because I knew if I needed a transplant I wouldn't get one...Well, quitting smoking was a good thing and I am still in Stage 2...the Stage I was diagnosed at in 1998. Take care, J in Illinois - dx 1998 - stage 2

She is probably right about the dying of something else, however, it is usually related to the disease, like lowered immune system and dying from some small infection that grows rapidly. Here is another inspiring message that gave me more food for thought...

Hi D, I have never heard of a way to find out how long you will live and I would think it would be a general idea rather than something you can bank on. Is that number something you really want to know to stake your life expectancy on? When I was first diagnosed it was the burning question I had. I just needed to know how much time I had. I got 2 different answers from two top hepatologists (one was 5-10 years, the other was I'd die an old lady.) The third, said "I have no idea, and there is no way to know exactly anyway, it would be a guess, and even if I did know I wouldn't tell you because I strongly believe in self fulfilling prophecy. If I tell you 6 years, you will somehow make that happen, the mind is a very powerful instrument." I listened to him and then realized he was right, I had seen it time and time again. I worked in palliative care and when the patient got up the courage to ask the doctor how long they had, he would answer something like "well you will see the leaves turn but you won't see the snow fall". In other words depending on the season, he would indicate they had a month or so. ALL of them died within a week. ALL of them. His statement had taken away their hope and there is no accounting for the human spirit in any scientific test. So do you really want to know something that there is absolutely no way they can know for sure. This is your life we are talking about. Look at cancer, with all they know about it, and they still have no idea how long a person has. Since I've had PBC, I've seen people with no symptoms, normal LFTs suddenly get varicies and be on the transplant list in days. Others in stage one have so many symptoms they are in constant pain and live 25 years or more. And getting a transplant is no more accurate with life expectancy. You can die on the table or within months or still be kicking after 16 years. I think our need to know is an attempt to take control of something that is really out of our hands, it is fear speaking. I understand that, this feels very out of our hands when there is little we can do to direct the course of our illness. But needing to know is holding onto something that in my opinion can take away years of your life. Do you really want fear to determine something so important? None of us with or without PBC knows how long we have. It is a crapshoot for every person on this planet. I understand how you feel, I was there, but I am so grateful I never got a number, because I can live each day as if it were my last (savouring it and with gratitude) and at the same time live as though I'll live forever (not letting a diagnosis stop me from planning and doing the things I wanted to do before diagnosis). I wish you peace, calm, equanimity, ease of well being and a long and happy life. Kathryn

That was so eloquently said, it gave me HOPE.

Pre-Liver Biopsy

2008-03-26T10:09:00.000-07:00

I have to say, this week has been mostly up, but I have caught myself displacing my anxiety more than a few times. It didn't come out as anixety though, it was morphed into anger, and directed at my loving family. That got me sad, and using more restraint on myself, which is good.

Today, I am working on the more details of making sure the house is better (not best though, things are a bit behind in the organized home front...toddler #4 will do that to a family!); and working at calming myself into a more peaceful mindframe.

I won't lie and say I haven't thought of the 4 outcomes my Gastro Dr. Em might say to me, and think of how I will deal with each blow, and who would be my first call depending on outcome (that is to say, IF I find anything out tomorrow). From what I researched, these are the most likely outcomes, but there are dozens of others too...

Everything is fine, just lose the 55 lbs you are carrying around and your health will return to mostly normal, you just have minor damage to your liver that may/may not heal, but your liver enzymes should return to normal.
Well, things aren't fine, but they aren't dire either. You have some minor problems that we can work with over time, but are life long since there is no cure for them...self-help, some meds, and if things get worse as you get older, we have some ideas we can work with (PBC or worse, PSC).
You have a severe life long disease that we will work closely with (be it NASH or full blown cirrohsis), and eventually you will need a liver transplant in 10-20 yrs.
You have cancer. You are not eligable for a liver transplant due to having cancer.

I am working on thinking positive, as I read, hear and even my Dad tells me...think the outcome you want, and you will most likely get it. It is true, we are what we EAT & THINK, and that is why I am in the place I am now.

I am aware that being this overweight is very bad for me, and that exercise and eating differently will save my life. From the time I worked at Burger King when I was 17, until my gallbladder was removed 11 months ago, I ate fast food about 3 times or more, a week (I was 34 at the time, that was HALF OF MY LIFE).

In our home, we don't have a bunch of junk or even soda. Those are special treats that happen on a bday or something (every other month here). We do eat too much pizza and ice cream, even though I am anti-dairy (what a dirty secret that is!). We don't buy cookies, chips (okay, tortilla chips and fresh salsa in fridge isle). We eat a lot of ground beef, cheap & easy to fix for a family of 6, and whole chickens when they are on sale at Roth's for 69cents a lb! What I am saying is that we don't eat like I see some families eat...a lot of crap. But we don't eat as healthy as I would like according to my own standards.

In 24 hours, I will be sedated, sliced open (just a bit) and a needle will pull some of my liver out to test. I pray, pray, pray that I get a second chance at life, and some life sentence doesn't come from this. I keep thinking, maybe I am overreacting...but what if this is even more than I realize it could be?

My Dr. reminds me though, if it were cancer, you would be losing weight...well, I am a steady 190, so that is a good sign!

Hepatic Function Panel- Liver Test Results

2008-03-18T10:28:00.000-07:00

ALP- 142 (normal 30-126)
ALT- 69 (normal 4-36)
AST- 47 (normal 8-35)

These are my most recent results, more elevated than the last ones I took about a month ago. At this point, we are looking at PSC (primary biliary cirrhosis), or worse yet PBC (primary scelrosing cholengitis), to which there is no cure for either.

Cancer is a possibility, but not what my gastro is looking for. I am worried enough though with the diagnoses above since they lead to ultimate cirrhosis of the liver and liver transplant for me in 10-20 years (Dr's speculated time frame), and can lead to cancer (especially PBC). My kids will be needing me still!

I have gone to the great lengths of crying myself to sleep over the possibilities- death, funeral, what happens to my family, Mark, my boys, money, etc. It isn't a good place to live & heal from, so I am strongly working on envisioning a positive outcome, while changing my dietary & physical habits as we speak.

I have much to catch up on here, but am taking one day at a time! Biopsy day is in a week and a half, and we will know so much more then (hopefully, otherwise is is MRI time).