An Inspiration...

"I still keep my hope and stuff.  I know I can beat this.  Just gotta have a lot of faith."  More on that quote a little later.

Earlier today, Colleen made a request for a blog entry.   This actually marked the first time she has ever asked me to write about any specific topic.    She didn't want this particular post to be about doctors or treatments or any of the more technical aspects of her disease that I have been typing about in my most recent posts.  To be exact, she asked me one simple question to write about:   "Why do bad things happen to good people?"

Obviously, I don't have an answer to that question.  Nobody really does.    I don't pretend to be a religious person, or someone who looks to the heavens for guidance when it comes to Colleen - I can't find answers in that spectrum, and there is obviously no test that can be run that shows us who is good and who isn't, and why bad things happen all the time to good people (and good things happen to bad people).

The first person that came to mind when she asked that question was Casey Anthony, the Florida mom who killed her daughter, found enough sleazy lawyers to defend her, and found a way to be found Not Guilty.  A bad person who, as long as she keeps her nose clean, will forever be able to walk this earth without any fear of being prosecuted again for killing her own kid.   Isn't this the type of person who should be struck with something that will keep her bedridden?    I wouldn't typically wish that fate on anyone - but if there is going to be disease in this world, may as well give it to the people who, quite frankly, aren't very good people.

It also brought a few other thoughts to my head.  Colleen's cousin and his wife dealt with a tragic death in 2007, when their 10-year old daughter died of cancer.    The brave little girl did nothing to deserve such a fate obviously, her parents didn't do anything to deserve such torture, etc.  The inspiration of her story is actually found in a series of online videos she did while she was fighting for her life (Here is one such segment of Tara's video diary - searching for her on YouTube may find more).       A kid with that much hope and faith that things will get better is inspiring - her videos are touching, hopeful, sad - a bunch of emotions all mixed in one big giant ball, and in the end, you realize her legacy is that of someone who can give hope to any of thousands of children who deal with similar conditions every single day.  I think Colleen would love to be one of those people some day - someone who can look someone square in the eye, tell them about how she fought through a most horrible ordeal, and came out of it feeling healthy, strong, and doing everything she has ever dreamed of doing.

There are more examples of bad things happening to good people.   Colleen's dad died many years ago (years before I even met Colleen) unexpectedly.   My family lost my father in 2013, a year or so after being diagnosed with lung cancer.   We lost a cousin, not much younger than I, not long after that unexpectedly.  I have a friend who deals with an illness that I believe is still unexplained, and she has a friend who is fighting cancer as well.   Another person I know had symptoms pop up that lead to the eventual diagnosis of Parkinson's Disease.  All of these people are good people - didn't deserve their fate, just like Colleen doesn't deserve hers - just like many people out there who are dealing with these crippling diseases do not deserve them.

But why does it happen?  Why can't we be picky and choosy?  If 5% of the population is destined to have Disease X, can we not just give it to the child killers, the serial killers, the animal abusers, etc?  Why do people who have so much to give and so much to live for have to end up often in bed, feeling so much pain and despair, with very little they can do to fix themselves?

Unfortunately, there is no answer to that.   "Everything happens for a reason" sometimes rings hollow, as there isn't always a reason for everything we go through in life - extreme illness definitely qualifies as something that doesn't happen with a higher purpose in mind.   If it did, we would all be hoping for it so that we can all find our higher purpose in life.     Think about when you get the flu.  Think about someone you may know who at one time was extremely sick and feeling hopeless, only to one day come out of it feeling healthy again.   Are they ever thankful for being sick, or are they thankful that they are once again healthy?  I would venture to guess the latter.

Sometimes, you may have to think like Tara - her final outcome wasn't what she or anyone hoped for - but the message is still loud and clear.  You need to have hope and faith that some day, everything will be better again.  It is not easy to reach deep down and find that when you are feeling sick, when you are having your worst days.   It is easy for a healthy person, such as myself, to say be hopeful, have faith, keep your chin held high.   But all of that has to come from within - the strength of a Tara to look cancer in the eye and say "Not me" is an inspiration.    Getting to that point in your journey is not easy, and may always seem impossible.   Colleen has had many moments in her horrible journey where she had those feelings - the feelings of being hopeful and crossing her fingers, only to run into another brick wall, or another person who makes claims they cannot really back up, or doctors who simply are completely clueless and uncaring.    Her strength, which she doesn't always think she has, inspires me - if she, as someone who is horribly sick and often bedridden can do THAT, then I can certainly do THIS.    Her constant efforts to get better are heartbreaking to watch when the ultimate outcome just doesn't come for her.     She deserves better, and everyone reading this deserves better.   It isn't fair, in any way, shape, or form - and it is my opinion that if you are sick, or have dealt with a sudden death in your family, etc. that it is perfectly acceptable to say "THIS ISN'T FAIR" without someone retorting with the dumb "Life isn't fair" crap.   There are scenarios where "Life isn't fair" obviously rings true - being chronically ill and not knowing when you are going to be able to eat again is not one of those times.

The person Colleen is has never changed.  If you are a chronically ill person reading this, always try to remember that:  The essence of the person you are has never changed - if you woke up tomorrow feeling healthy and strong, you would probably run out the front door, naked and screaming to the world that you are healthy again (Colleen once commented that she would have a giant party as soon as she is healthy again.  OK, she may have said "IF she is healthy again" - I, as her husband, resist using the "I" word)

So why do bad things happen to good people, while bad people are able to roam the earth free and easy without even the slightest bit of indigestion?   The answer is not as clear as the day, nor is it like a math equation that can be solved in a few steps.   The illness is not punishing you for a past injustice, nor does it make you a different person inside than you were before.    They are two separate entities - the good person you are and the bad illness you have been given.  They intertwine in how you feel daily, no doubt about it.  But you aren't bad just because you are sick - and Person X isn't good just because they are healthy. Unfortunately for all of us, sickness has random elements to it - which is why people who are active, eat healthy, etc. can still find themselves in a hospital bed, while someone who can't get through a day without eating two doughnuts and smoking a pack of cigarettes lives to 90 without any medical conditions.  In many ways, like the illness you are suffering from, it is a great mystery without any detective capable of solving it.

As for the quote in the beginning of this entry, as you may have guessed - it comes from Tara.   In the end, knowing you can beat it and having the faith you can is very powerful.  It may not always be enough when it comes to our bodies, but having the hope and the faith and the ability to stay strong is what ultimately will carry you to the finish line, no matter what ails you today, tomorrow, or next week.   Don't let anyone bring you down or make you feel smaller than you already feel - you are worth the air that you breathe, and one day the sun will hopefully shine brightly once again on you.

The Chicken or the Egg?

It probably doesn't take a rocket scientist to figure out that the past three years have been complete torture for Colleen - especially on a physical level, but also on an emotional level.     If you have a chronic illness, you have probably dealt with the emotional side of the spectrum.    Perhaps at one time, you were able to do whatever you wanted without the fear of passing out, throwing up, or becoming so overcome with pain that you end up in bed in a fetal position.     When an illness hits you as hard as this one has hit Colleen, you will (not may - WILL!) forget exactly what it is like to be healthy.   Sickness becomes your new normal, and trying to get out of that phase is extremely difficult - some would say impossible.    I dealt with it when I went through my own illness.  It became a situation where I knew I was going to nearly pass out when I walked through a store.   I knew I wouldn't be able to walk my dogs more than a block without feeling dizzy.   The biggest one is that I most definitely knew I wouldn't be able to drive to see family and friends without experiencing at least one incident where I felt as if I was passing out at the wheel (which did happen once).  Once you start to accept that as part of your life, you don't even really think about how it was before you got sick - it feels like a lifetime ago.  In some ways it feels like you were never healthy in the first place.

Colleen went to see her GI doctor today.  A local woman probably no older (and perhaps even younger) than Colleen who has the ability to be compassionate and relatable while also being direct and honest.   If you have ever gone to a doctor who runs a million tests that "proves" to them you have nothing wrong with you and comes to the conclusion that everything is in your brain, that is not a doctor worth keeping.  The difference with this doctor is that she doesn't just say "It is in your head - now go away".  Rather, she explains how our systems work within our body - and how emotions, stress, and anxiety can cause our systems to go haywire.  This does not mean what you experience is all in your head - what it does mean is that your brain is working on so much overdrive that it makes your real symptoms even more unmanageable.

So, what does all of this have to do with the chicken and the egg?  As she explained today, there isn't an answer to the simple question:  Is my mind causing my symptoms (or making them worse) OR is my illness causing my mind to explode with fear, anxiety, and panic attacks?    When I read that question, I come to my own conclusions with my own answer.  Simply put, it doesn't really matter which comes first - because the bottom line is that you end up with a brain that is working at a speed of a million miles per hour while your body is in constant pain that you simply cannot get away from.    If you have constant stomach pain, where does the feeling of "pain" come from?  Your brain, of course.  That is how we feel pain - when we bang our knee against a wooden table, we typically do not feel the sensation of pain in that moment - it takes a millisecond or two for your brain to process what just happened and give you the feeling of intense pain. 

The GI doctor also explained what Colleen is going through this way:   Our human body is constantly doing things that we cannot feel.   The typical healthy person cannot feel it as food is going through their systems.  We can't feel the blood flowing through our bodies - we don't sit down and feel our heart beating, etc.  But for people with a condition like Colleen has, these sensations are actually FELT and magnified to an extreme.  In my mind, it is kind of like going through surgery without being knocked out first - if are having major knee surgery but the doctor decides not to put you to sleep first, you are going to feel everything that is going on (thinking about that I am sure makes you feel scared).   That is how someone with Colleen's condition can actually feel - her stomach/digestive system/body/brain/whatever is not hiding all of the stuff that is going on inside of her.   Hence, she gets sensations of "sloshy" liquids in her stomach, or intense pains throughout her body.  It is a vicious, unrelenting cycle that is very hard to get out of.    Simply shutting off your brain doesn't fix it, because you have a REAL PHYSICAL CONDITION (again, don't let ANY DOCTOR convince you otherwise!).  Simply shutting off whatever the disease is you have is also not likely going to make you feel 100% - because your brain has not yet been shut off as well.   So, you become "cured", but your brain simply won't accept it.   As I stated many times, I have been there, done that.  After my illness pretty much left my body, I still went months where I had trouble driving.  There was nothing really wrong with me at that point, but the incident where I passed out at the wheel when I was legitimately sick was still there - and  my brain would not let go.  I can't even really tell you when my brain decided to let it go and let me drive normally again.   

As for today's visit, for now we have to deal with a new diagnosis:   Since everything has been essentially ruled out, Colleen may have a bad form of IBS, which is something you can look up online.   The first thing you may thing when you see that is "IBS!  I've heard of that - thank goodness it is *only* that!"  Well, yes and no - yes, thank goodness, because IBS is not typically a disease that kills you.   By the same token, it also has no known cure - only treatments, a few of which Colleen is starting today to see if it helps her symptoms at all.  As with everything else, she isn't going to feel better after one pill - we just have to hope and pray that the treatment over the course of several weeks gives her relief and makes her feel better and herself again.    For those who are wondering "Do I have IBS?  How did the doctor come to that conclusion?", the answer is simply this:   IBS is an exclusion diagnosis.  A good doctor (which this woman is) will NOT diagnose a patient with IBS unless every other reasonable condition has been ruled out through testing, observation, therapies, etc.

Does this all mean that Colleen definitely has IBS?  Of course not....if you have ever heard the term "You can't prove the negative", here is the time to apply that.   IBS is something that cannot be proven - it can only be given as a cause when everything else comes back and says "No".  Since you cannot prove it, you also cannot ever tell anyone that they definitely have it.  

In any case, that is where we are at the moment - I haven't mentioned anything in this blog about her BodyScan experience, but that for now will be left for another day.    We just want (NEED!) Colleen to be healthy again - whatever path we choose that gets her where she needs to be is the one we will applaud in the end.   I will also write up a separate blog about her GOOD GI doctor soon.