One Bag At A Time

First post! Here goes....

At John's last set of Dr. appointments up at OHSU in Portland and over the Christmas break, we met a new hepatologist (type of liver specialist).  Two years ago, when Morgan was just 2 weeks old, John had his first set of scopes. They then diagnosed him with having Celiac's Sprew and Ulcerative Colitis.  They also said that he was showing signs of a separate liver condition and that he should have more testing done on that.  Over the next few years, as he took various MRI scans and tests, we saw several Doctors until we found the right specialists up at OHSU in Portland that we both agreed would put him in the best of hands. In the meantime, some of those first doctors brought up a few liver conditions he might have and told him to go look them up (because the internet is the best place to go for that sort of thing.... right). Long story short, the OHSU Dr's over this last appointment finally confirmed that John does indeed have a very serious autoimmune liver disease called Primary Sclerosing Cholangitis (PSC for short). I asked the doc some very serious questions about odds and what all this means at this last appointment because I was finally ready to hear the truth and because we needed to know.  After all, this changes our future.  He was pretty frank and honest, but also kind and understanding.  This is what he said: PSC is very serious and for now is not curable, or even treatable, except through a liver transplant. The general odds are that he will get to that point of needing a transplant in about 10-15 years from diagnosis.  Right now he is thankfully non symptomatic.  In fact, the Dr was surprised it was caught already considering most people don't catch something like this until they have enough symptoms to warrant those kinds of tests.  (What he didn't understand is divine intervention and how the Lord works, but that's for another blog post).  He also let us know that because of this liver disease as well as his ulcerative colitis, John's chances of getting either liver or colon cancer in the next 8-10 years are also extremely high.  Hence the yearly liver MRI and scopes he will continue to have done so we can catch and treat it early on.

Believe me when I say there has been an abundance of different emotions and swirling thoughts going through my mind and heart ever since this appointment.  For the sake of anyone who might read this, I'll keep those bottled up inside for the moment, like I have fought hard to do the past few weeks. There are, however, a few thoughts and plans for the future I have been feeling an urge to express on here.

First, our whole outlook on the past, present and future has changed.  We both feel strongly that the decisions we've made and where the Lord has put us up to this point is exactly where we need to be, despite it maybe appearing otherwise.  I have many thoughts on all of those decisions and the paths that were shown us, but once again, that is for another post, or maybe just our own private conversation.... if you'd like one, let me know =)

Second, it has always been our plan for me to go back to school and finish my degree once we were done having kids and they were all in school.  We knew through our own personal inspiration that there were 4 very special and choice children coming to us.  Our sweet Kira was such a difficult pregnancy, but so worth that forever long 10 months.  Now that she is here, however, and with the present circumstances, we both feel it necessary for me to go back as soon as I can and with the purpose to have a career instead of just that emergency degree in my back pocket. John has a perfectly good and capable job currently and should be able to keep it for hopefully a long time yet.  It provides great health insurance and other benefits as well as an adequate salary to support a family of six.  However, those familiar with needing a life saving transplant are aware that you aren't gifted  a new organ immediately upon a diagnosis.  One of the things that scares me the most is the process to be endured for John before he ends up on the top of those transplant lists.  (That's why it's important to register as a donor!!) We are almost certain there will come a time when he won't be able to work, especially doing the work he does now with large corporation taxes, with the symptoms and ailments he'll be fighting.  He will be in liver failure, after all, which really worries me the most.  I will need to already be working at that point, in a career that offers family insurance and benefits to make sure he is able to get the best treatment we can.  Plus, there is a good chance he could be fighting cancer before he even gets to that point.  Obviously we hope for the best, but we also feel the strong need to be prepared as much as we can for various situations.

Third, I am ok with this new plan.  I am not afraid of hard work. I am also aware that it is very common now a days for both couples to work out of the home- whether out of necessity or desire and it is definitely not something I am opposed to. It wasn't quite in our original plan, but I am more than willing to do my part.  I love this guy of mine more than I can even comprehend.  I am 100% willing to sacrifice and do all I can for him and for our family.

However, I am little bit terrified and a lot bit worried.  I haven't been in school for 8 years now! Since that time I've had five exhausting and draining pregnancies and too many sleepless nights to count.  I'm pretty sure my brain is fried.  There has got to be a serious shortage of brain cells up there.  I currently forget everything, including the fact that we now have a fourth child (don't worry, no harm was done to said fourth child....).  My brain already feels like I am on overload and it's already a daily struggle to just keep my house under control and my sassy two year old happy and entertained. Not to mention just feeding my family is an entire process that takes lots of planning and time.  With both John's health and the rest of my kid's allergies, we are currently at a menu that consists of no gluten, no dairy, not nuts, no red meat, no eggs, and no soy.  I spend way to much time scouring the internet and cookbooks for anything to feed them so we don't keep eating the same two meals day after day.    How on earth am I going to handle all that I do now on top of school and eventually work?  I worry I will fail all my classes with my jumbled brain and heavy load at home.  I have a very big fear of failure.  It scares me greatly.  Will I be able to do this?  Am I smart enough?  I have the motivation, but will my body and mind have the strength? Most importantly, how on earth are we going to survive if we can't pick up some pizzas or Taco Bell on those crazy busy nights? (in all honestly, I really worry about that! haha. Thanks stupid allergies.)

All of this has been swirling around and weighing heavily on my mind these past few weeks.  I don't feel like I have one huge burden on me I need to conquer.  Instead I feel like I have all these little (and some big) burdens, or challenges rather, coming at me from all different directions.  I have been feeling at times like I just can't keep up, even just with all the worry they all bring. A few Sundays ago, I was expressing some of this worry, and well mostly my lack of strength, smarts and talents to be able to do it all, to John on our way into church.  He, as always, had some kind words of encouragement to say.  He has always had way more faith in me and my abilities. I really struggle to see and find the talents I might possibly possess, yet John has always believed in me and been one of my biggest fans. One of the many reasons I need him in my life!

But I digress.... despite his kind words that morning, I was still feeling weighed down.  During our church service that day, one of our leaders in our church, a member of something we call a stake presidency, spoke for just a few moments at the end of our sacrament meeting.  What he said really hit me hard.  The first thing he mentioned was that he had accomplished a lot that weekend.  He was working on some type of home project I believe and he alone had lifted about 8,000 pounds! This is a slightly older man who I would guess is at least in his 60's? My first thought was that he couldn't have been serious....  He then went on to explain, however, that although he did indeed lift that much weight, it wasn't all at once. That weight was divvied up into 80 lbs bags. One at a time, he lifted and moved those bags.  He related that to our trials and challenges.  We too do not have to lift it all at once.  We can deal with and accomplish what we are facing one bag at a time.  Oh man did I need to hear this.  I have thought about it often since then and am even debating putting "One bag at a time" on posters throughout my house.  Maybe at least by my bedside where my most earnest prayers for help are expressed will have to suffice. I know I can do this. Most importantly, I know my father in heaven will help me lift these bags one at a time when each need arises. One thing I strongly believe after several recent experiences is that our Heavenly Father is absolutely aware of each of us.  He knows of our struggles, our wants, our desires and needs. He will not leave us alone.  That doesn't mean he will always give us the whole picture and answers to each and every thing.  Quite often I have found that he waits until I fully think and plan through things, and it is when I put it into action that I have felt that quiet, but firm confirmation that I am either on the right, or sometimes wrong path.  He expects us to do our best and put in as much as we possibly can first.  That is how we gain strength and knowledge- through our own efforts.  Sometimes this requires us to struggle and even fail at times. The most important thing is that we get back up each time and keep trying, keeping fighting.


All of that said, here is our current plan:

Steph:  For the rest of this school year I am focusing on getting healthy again now that I have my body back.  That includes physically, emotionally and spiritually.  I lost a lot of that through the last few pregnancies and I am ready to get it back, to be me again. I am also making an honest effort to just enjoy every slow moment I am able to have right now at home with the kids. I'm still not getting very much sleep with my girls, but each month seems to be getting a little easier.  I also plan to take this next year to research various schools and programs as well as scholarship opportunities. I don't really have the time and money to try out a few things here and there.  I am hoping to nail down the direction I want to go by the time I get back into it so the whole process goes as smoothly as it can.  Scholarships will be key. At the moment I am leaning the most towards teaching since it offers good benefits and gives an opportunity to still have summers off with the kids.  Plus I love teaching and working with kids.  I have had lots of experience with that over the past decade and the few years of credits I did complete in Early Childhood Education should help cut out some time.  There are a few online programs I have been looking into, but online is also double the tuition at least.  With still paying off John's student loans and with the many medical expenses every year we now pay, we'd really like to avoid adding a large amount more in student loans for me.  If anyone has any great advice/recommendations for grants and scholarships, please share!

John:  Keep him as healthy for as long as we can and pray for medical advancements in the next 10ish years! The biggest thing with health is trying to keep his ulcerative colitis under control. This is crucial because the more flare ups he has, the more inflammation build up there is.  The more build up there is, the greater his risk for cancer.  So far, he has found that exercise, eating, and stress levels are key factors for keeping his UC under control. Stress and eating certain foods like gluten, read meat, nuts, high amounts of sugar, brown rice, etc. all seem to cause flare ups.  Exercising, riding his bike in particular, helps keep the flare ups at bay. Plus keeping his body as healthy as he can lowers his risk of other diseases and gives him more of a fighting chance for when he does deal with side effects and possibly cancer.


The last thing I want to quickly mention is about gratitude. We feel very blessed and full of gratitude to have been given a glimpse of the future so we can start preparing now.  Though we know there will be a battle ahead for John in keeping him healthy, we know there are many out there that face these type of heath struggles already.  They often come for them out of the blue. I also know there are far too many that lose their spouse or loved one without any warning at all and are forced in that moment to care for their families left behind.  My heart aches for these good people and I look up to them for their courage and strength in hard times.  Our future may be different than we hoped for, but we have been blessed with time and a little understanding.  We plan to use that to our advantage and become as prepared as we can, including with our spiritual and emotional state so we can have all the strength and help possible. Also, we are truly grateful for the Word of Wisdom.  (Information on this from our church can be found here. ) John is alive and has more time before he is in full on liver failure because of his decision to abstain from alcohol and smoking.  Dr's have stressed several times to him how crucial it is to never do either of those.  If he had been a college partier, his chances of already being in liver failure would be through the roof.  On top of that, following the word of wisdom's references to eating, exercise, and getting enough sleep while striving for a balanced life are the most beneficial to keeping John's symptoms at bay for longer anyways.  It is always amazing to see first hand the inspiration from modern day prophets and the good that comes from following them.

While this post has been a million times longer than I originally expected, it has felt good to finally get the words out and recorded somewhere.  I don't claim to be an excellent or gifted writer, but it is something that I enjoy and find extremely therapeutic. I often walk around with a story in my head.  Literally, my thoughts quite often turn into me speaking as if I am writing a blog or book, especially when I have a particular worry on my mind.  It's nice to finally write some of that down.  Thanks for bearing with me!