Welcome to my blog!

I started this blog to share the ups and downs of real life. The good, the bad, the happy, the sad, the mundane, the insane...you get the picture. Why??? For no other purpose than to encourage others who are raising a family, going through the ups and downs of life, letting you know you are not alone, and that we are not all epic failures for having a life that is not perfect!!!

Thursday, June 21, 2012

Don't Let Others Cheapen Your Growth or Minimize Your Victories

Let me start out by saying I have intentionally left out names and relationships as not to offend anyone.  Plus, the drama surrounding this situation is not important to the lessons learned.

This past Sunday, my son and I got to share our story.  Our struggles, our challenges, and how we ultimately overcame all of them to become close, and have a great relationship.  It was brutally honest, emotional, and felt very vulnerable for both of us to share our journey, but we did, and people were blessed by it.  I was blessed by it.  It's not everyday you get to share your struggles and help other people feel like they are not alone, and there is hope for any situation.  I felt hopeful, encouraged, victorious.  Until afterwards.  Two things weighed heavy on me.  First, some people who had witnessed how dysfunctional things were, who should have been there, weren't.  We didn't even invite people.  We couldn't.  Whether they don't agree with our faith, which was a huge part of our transformation, or there are strained relationships, or even people who refuse to see positive changes.  Although surrounded by a loving, accepting, and encouraging church family, it was lonely.  One of the things it caused me to do was to question or minimize our journey.

The second thing that weighed heavy on me, was that instead of celebrating the place my son and I were in, we had people close to us turn the message into a personal crusade for them, and in response to that, another person insinuated that I was filling my son's head with garbage, and that our relationship came at the expense of others.  To put finishing touches on it, I was informed that I have been the cause of heartache, disappointment, and uncertainty.  The kicker is, the person who spouted all of this, was coming from a place of anger, and only knew one side of the situation.  Not the whole picture.  Not even a sliver of what my family faces day in and day out, and have had to deal with-pretty much alone.  All this made me second guess everything.  I felt like it cheapened the growth my son and I have experienced.  I also felt like our victories were small, and very misunderstood.  This weighed on me for a few days.  Before it got to the point where I dismissed all the growth, and all the positive changes we have made, I had to really look at the situation for what it was.  I was letting other people's opinions and reactions tarnish the truth.  I didn't spend alot of time trying to figure out the motives of certain people, to be honest, I wasn't interested.  So once I licked my wounds, calmed down a little bit, I was able to put it all in perspective.

The fact of the matter is, your growth, and your victories are important.  They do matter, and they should be celebrated.  Even if it is only by you.  I have had to learn that I can't let other people take away from the good things going on in my life.  I have also had to learn that I can't expect everyone to support us, encourage us, and help us through the bad times.  Two very valuable, and life changing lessons.  So whether it is big or small, a step or a leap, or a small hurdle overcome, or a large wall overcome, do not let others take away from that.  For my part, I am going to make sure that I never cause anyone to feel the way I did for a day or two after Sunday.  Any step forward is progress.  Don't let others take away from that, or stand in the way of that.  Be victorious!!!

Sunday, June 10, 2012

I'm Not Alone! I Finally Got to Speak With Someone Who Knows Chiari First Hand!

Let me just start by saying this is totally a God thing.  Some of you will blame it all on chance, and that's fine.  As I have said before, going through this journey with Chiari has been discouraging, lonely, frustrating, and just plain tiring.  Unless you have been through it first hand, it is a hard disorder to comprehend.  I finally got to speak with someone who does know first hand.  It was a young woman, my age, named Becky.  She was working as a full time missionary in Africa, and had to return back to the US early due to ever increasing symptoms, and much like me, a very quick deterioration.  We'll get to her story, and our discussion, a bit later, but for now, let me unpack how this whole thing unfolded.

Friday was the worst day in a particularly bad week for me.  It was agreed upon by myself and my neurologist that I shouldn't be driving anymore, and that I am unable to work for a while until we get some of the symptoms under control.  So as a man, and a father, that is a hard place to be.  I went from working two jobs, 70 hours a week, to not even being able to work a full work week.  Add to that the fact that I am not the same person anymore, and my wife and kids have all commented on this.  It kind of all boiled over on Friday.  I can honestly say, it was the worst place I have been in in some time.  My only prayer to God all week was that I really just needed to see Him in all this.  In any way, big or small.  I just needed to feel that He's got this. 

We have a great set of neighbors, who have lived next to us for 8 or 9 years now.  We almost never get their mail.  Well Friday, UPS showed up, handed me a package, and left.  I looked at it and realized it was my neighbor's package.  (Incidentally, He is a Pastor, and she works side by side with him in his ministry.)  Emily said she'd bring it over, and was talking to our neighbor, Suzanne for a little while.  Emily updated her on where I am in this whole process, and told her specifically the name of the disease I have, Chiari Malformation.  They have been in constant prayer for us.  My neighbor proceeds to tell Emily about a young woman whose mother, as well as herself, have know them for a while.  The daughter, Becky, has had a lot of the same symptoms as I have had, and just had a surgery to correct it.  Suzanne wondered if it was the same thing, and told Emily she would ask her next time she sees her.  (Which was not expected to be this day.) 

Fast forward to Friday night.  Suzanne's husband, James, (the Pastor), comes to see me at 8:30, and says hey, c'mon over to my house, I want you to meet someone who has had a similar struggle.  Sure enough, it was Becky, and her mom, Grace, who just happened to show up at their bible study that night.  (They do not regularly attend this bible study.)  As Becky and I begin to talk, it is indeed Chiari that she has suffered from.  Not only that, but we have seen two of the same doctors in two of the same practices.  We have both been told that one of the diagnostic tests they use, a CINE MRI Flow Study, were in normal ranges.  We were both put in this waiting cycle, ruling everything else out, and basically, waiting for the neurosurgeons to decide our lives were impacted way too much before they would do the surgery.  Then she went to see a third surgeon, Dr. Krishnamurthy.  (She passed over him once before because he was in the same practice as her first consult.  I passed him over as well for the same reason.)  He was also recommended to me before by a former co-worker.  She went and saw him, and within a week, she was in the hospital, having her surgery.  Aside from that he was an EXPERT in this disease.  He even studied in Germany for a while to learn the best ways and procedures to treat this.  Needless to say, I will be speaking with his office Monday.

Becky is two months post op, and although the recovery has been long, painful, frightening, and worse than she could have imagined, her Chiari symptoms are gone.  She feels great appreciation for this surgeon, who was kind, compassionate, and understanding, especially after two previous surgeons were dismissive and cold.  She is well on the road to recovery.

Being able to speak to a real, live person, comparing symptoms, emotional changes, and discouragements, was amazing.  I realized I am not alone.  I wasn't crazy.  There was indeed someone else who knows exactly what I have been going through.  I was encouraged, re-energized.  Ready to face this head on again. 

Now to put this in perspective, 1 in 10,000 people are affected with this.  In Central New York, there are roughly 25 neurosurgeons, and we saw the same ones.  Some of the comments they made, were made to both of us.  We both had a false negative on one of the tests, and the surgeon that did her surgery, doesn't even use that test.  We have been living next store to our neighbors for 8 years.  That's 2500 mail delivery days, and we've only gotten their mail a handful of times.  Yet this day, we got their mail.  It was Suzanne who put the pieces together, and then this young lady shows up at their bible study, right next store, on the same day that I am at my lowest point.  Divine appointment?  I think so.

Becky an I prayed for each other, exchanged numbers, and agreed to keep in touch.  (They even want to make sure they know when my surgery is, so they can visit, and support me and my family.) 

I have a new sense of strength, and maybe that's because there truly is strength in numbers.  And I am truly not alone.  I met a person who fully understood the journey that I am on.  It was amazing.  I will keep you posted

Thursday, June 7, 2012

Save the Trees!!!

It never ceases to amaze me.  The amount of paperwork needed for what to me are simple tasks.  I mean think about it.  Whether its all the paperwork required for a new job, medical issues, insurance, DMV, right down to monthly bank statements or cell phone bills!!!  Does it really require 8 pages to tell me that my son texts a lot, and I have to pay you $170?  I think not.

Aside from the sheer amount of paperwork needed, there are the "important" documents we are supposed to save.  Tax forms from previous years, pay stubs, bank statements, blah blah blah.  Oh, I almost forgot! We also have to save every picture, poem, story, art project and report card from kindergarten on.  (And don't even try to secretly store them in the circular Rubbermaid file-I assure you, your children will find out, and be devastated because the crayola masterpiece you threw away was a milestone in their young lives.)

Now don't get me wrong, many of these typed up, colored on, signed, dated, and notarized dead tree parts should be saved, or at least the information on them.  In my own experience, in my own home, I feel like we are being over-run by papers.  Papers that are never where they should be when you need them.  Drawers, files, refrigerator, my desk.  And don't forget paper towels and toilet paper.  It's everywhere, and no matter how organized we are, with the constant supply of endless medical and insurance documents, all the papers that come with 4 children, and the junk mail we still get in this age of e-everything, I truly feel that one day, we will have to vacate the premises, due to a fire hazard.  Incidentally, is a paperwork fire considered a forest fire?  Papers are, after all, remnants and remains of many a happy little tree Bob Ross imagined and painted in some meadow.

OK, so I am being dramatic and sarcastic.  But here's my point.  In an age where we learn about our friends and family's comings and goings on facebook, and communication is largely in the form of texts and tweets, isn't there a better way???  Now I could go into a long, drawn out dissertation about how our mass consumption of paper products is leading to the melting of the polar ice caps, but I won't.  And I could launch into a rant about how we are destroying our beautiful, natural landscapes, (which, by the way I agree with.  Nature is a horrible thing to destroy,) I won't go there either.  No, instead, I will cry out to the powers that be, to save humanity from the see of paperwork threatening to overcome us.  Many people think an asteroid strike or even a zombie apocalypse will be our downfall.  Me?  I think we will be overrun with paper.  For the love of all things good people, save some trees!!!

No if you'll excuse me, I'm gonna go read the newspaper.

Sunday, June 3, 2012

Great Expectations (or Something Like That)

Let me just start by saying that yesterday was one of those days where I should have just stayed in bed.  I felt like garbage right from the start, I have drastically cut back on my coffee intake, (those of you that know me, know that I should have been committed for that alone), and the stress of my illness and the limitations it causes, all came to a head-yesterday.

(Stick with me, it will seem like I am just venting, and in some aspects I am, but I also learned a very valuable lesson that could potentially change humanity as we know it!!!)

Let me skip all the details, and just say that I ended up arguing with just about everyone yesterday.  All of that led me to a very startling conclusion:  I expect way too much from the people in my life-people I love dearly, and people I care about very deeply.  For those of you that know me, this comes as no surprise, but I love hard.  I feel hard.  And when I'm hurt, I'm wounded hard.  I'm pretty much an open book.  What you see is what you get.  ( I definitely got that from my father.)  Some of that is reasonable, and I would never change that part about me.  I am very passionate, and that usually serves me well.  Where it doesn't serve me well, is that I say what I feel, and I don't sugar coat it.  I'm not one for fluff.  If I complement you, I mean it.  If I am upset with you, you know it.  Not everyone operates that way.  So there is lesson number one.  I can't have the expectation that everyone will respond well to my form of transparency. 

So in the course of the chaos yesterday, I realized another thing.  I put expectations on people that either I have never even shared with them, or for whatever reason, they can't or don't want to live up to them.  How many of you do the same thing?  Its like someone heading to Vegas and blowing a ton of money, then being upset cause they didn't break even.  What did they expect????  Well, in some ways, I have done the same.  I expect those in my life to be encouraging, supportive, and even if they don't see my vision, to just get behind it.  I expect that if I see how something can be improved, everyone else should too.  I expect that just because I value something, everyone around me should as well.  (keep in mind I'm talking about people who are closely involved in my life.)  Now, some of these expectations are reasonable, and logical, but not always fair.  For instance, I have a tendency to be goal focused, and I just keep working towards that goal like a freight train.  I never take a look at what others are going through, and whether or not they are even capable of meeting my expectations.  There in lies the problem.  I expect too much, or don't communicate my expectations well, and I get hurt, frustrated, annoyed, disappointed when they aren't met.  So whose problem is it that my great expectations aren't met??? Mine.  (here's the part that could change humanity.)

What if, just a thought here, we learn to not expect so much.  What if we take our great expectations, and bring them down to attainable expectations?  That's the journey I am on.  Learning to expect less.  People are humans, humans are fallible, myself included.  I think I will be saving myself alot of headache, turmoil, and strife in my life.  (Let it sink in- it really is revolutionary!)

On a side note, I don't think we should lower our expectations of God.  (That's a whole other topic for another day!)
Oh, and in times of high stress, I wouldn't recommend cutting back on coffee.  I would imagine I looked and acted like some sort of gremlin, and not the cute ones!!!

Friday, June 1, 2012

My Brain is Falling, My Brain is Falling!!!

As some of you may know, I was diagnosed in October of 2011 with Chiari Malformation Type I.  I figured I would blog a little about what it is, how it has affected us, and what the ultimate treatment will be.

For starters, Chiari Malformation is most often a birth defect, but can also be due to a trauma or sever case of whiplash.  Most often it shows up in the ages of 20-50, and 90% of the time, it is found quite by accident.  Chiari sufferers usually go years and years without a proper diagnoses, and that is due to how little is actually known about the disease.  Roughly 1 in 10,000 people are estimated to suffer from this disorder, and although it hasn't been officially labeled as hereditary, it does usually run along family lines.  My father was diagnosed in his early 40's, had the surgery to fix it, and did very well afterwards.

So what is it?  Basically, there is a deformation in the back of the skull, called the foramen magnum, and this causes overcrowding of the cerebellum, cause that part of the brain to be pushed down out of the skull, compressing the spinal chord.  Symptoms range from sever headaches, neck pain, sever dizziness, numbness and tingling in the extremities, problems with balance, swallowing problems, ringing in the ears, and even fainting spells.  The surgery to correct this problem involves removing a small portion of the skull and the dura, and possibly removing the arch of the first two vertebrae.  This makes more room for the brain, and restores normal fluid flow around the brain.  This is caused a decompression surgery.  The surgery is about 4 hours long, and requires about a 5 day hospital stay, but often times require a 4 to 6 month recovery period.  ( My father did extremely well with his surgery, and went back to work 3 months to the day of his surgery.)

Where am I at in all this?  Waiting.  The neurosurgeons I have seen wanted to rule out any other possible causes for the symptoms I am having, which are severe, crippling headaches, chronic vertigo, constant ringing in my ears, and I have had several blackouts.  Most everything else is ruled out, and I have had more MRI's, CT scans, and other tests than I can count.  My neurologist is fantastic, and is working very hard to help me manage the symptoms, and now we wait for the neurosurgeons to ok the surgery.  (Hopefully soon, my work schedule has been severely effected, and so has our financial situation.)  This has taken a toll on my wife and my kids in an awful way.  Between managing my symptoms, doctors appointments, and now I can't drive, this has forced them all to pick up the slack in various ways.  Emotionally, I am not the same person I was, and both my wife and my kids have commented on that.  Sometimes we laugh and make jokes about it, sometimes we cry about it.  Most times, we take it for what it is.  We have found support in many places, our amazing church family, my grandmother Barb, who is always worrying about me, (stop worrying, we're getting through!!!), my in-laws who have taken the kids whenever we've needed, and even some of my co-workers have donated some time, covered some shifts, and have been overall patient with the limitations this has caused. 

Learning things about myself? Absolutely.  Learning things about my wife and kids? most definitely.  Frustrated and at times, ready to give up? Yes.  But we're dealing with it. 

Hopefully this brings some understanding to some, and some tolerance and support for others.  Since I don't often look sick, it is hard for many people to understand.  I have been dealing with this for four years and counting now, and have been told its was everything from depression, migraines, a pinched nerve, stress, grief, even a testosterone deficiency!!!

The best way to explain it is from another blog I read, (http://chiari-life.blogspot.com/), and goes like this:

"The first thing that comes to my mind is "But you don't look sick!?" Yeah, we get that alot. Chiari Malformation is considered an invisible illness because you don't usually see the symptoms on the outside.
Of course I look normal.
You can't see the pressure in my head.
You can't see that it feels like my head could explode at any minute.
You can't see that my hands and feet are numb and tingling.
I may stumble or walk into something, but I just look clumsy to you...You don't see my balance and depth perception problems.
You don't hear the ringing in my ears.
You hear my speech slurr or I trip over my words. You laugh, I laugh. But do you know why it happens? Does that come to mind when you hear it?
You don't see me almost black out from getting dizzy and lightheaded if I drive too fast over a hill.
(I know why I can't ride rollercoasters.)
I could continue to go on and on with the list.
I have tried looking at things from the opposite point of view. The other person can never fully understand what you are going through. They may try to relate by sympathizing with you over something they have gone through. "I've had surgery once. I went in to get my tonsils taken out"
Oh ok...not quite on the same plane as brain surgery. "So you're cured now that you've had surgery right?" No surgery is not a cure, just a form of treatment. "Oh."
People do not understand why surgery if its not a cure. What is the point of surgery?

When I first had major problems I went back to my family doctor a few times for "migraines". Each time I was given a different medicine or something to try. Finally he ordered an MRI after I went in and couldn't turn my head at all. I was lucky enough to be referred to a NS who knew of Chiari and wasn't afraid to work with it. He has followed up ever since. I was diagnosed in 2003.
A lot of people go through several doctors, neurosurgeons, neurologists, and other specialists before they are diagnosed.
After diagnosis its a mixed feeling. You're relieved because you finally have an answer for what you're going through. But on the other hand....what do you do with it?

You barely understand it, how will anyone else? So you begin to tell your family and then your closest friends. Again...they don't really experience what you're going through. They know what you're saying. They don't feel the pain. It's hard to sympathize with the unknown."

I'm Back- and LIfe Goes On.....

     Wow, I actually lost track of how long it has been since my last blog!  Not that things have been uneventful, just lost track I guess.  So, here is a quick snapshot of my life over the last year or so:  The kids are great.  JB is a freshman in high school, and has become quite the musician.  He is in the marching band, and last year they came in third in the nation.  He and I have been jamming together, and its been great.  He has helped out with worship a few times at church, and that has given me some of the proudest moments.  He is making great choices, and really seeking out his purpose in ths life.  Nathan is in 6th grade, last year in the elementary school.  I can't believe it.  He has an old soul.  Quiet, gentle, kind.  He loves wrestling and he plays the viola.  He even got a medal for being selected to play in the all district orchestra.  Aiden is the life of the party! He is charming, funny, (very much like my father was) and sometimes- I wanna strangle him! (I'm joking!!!)  He has also taken up percussion, and is quite a natural.  He is excelling at school, and is still is the elementary school.  Emma is just a joy.  She seems to be the heart of our family.  JB has an amazing realationship with her, he's a natural.  He will be an amazing father someday.  Nathan spends alot of time with her, playing, laughing, and he's usually the first one she goes to for help.  She sings, dances, makes us laugh- she's so smart and beautiful.  Emily and I were just saying how much she is a part of all of us, and how our lives would all be so different without her.  My kids are amazing, and while God blessed us with them, Emily and I have worked very hard at given them a good foundation, and though many people have criticized us, and voiced opposition to how we raise our kids, they are living proof that we did something right!!! 
     What else...I'm still working at the dialysis clinic, and it is what it is.  I was diagnosed with Chiari Malformation in October of 2011, and much of my life has been doctor appointments, tests, and managing symptoms.  Surgery is inevitable, the doctors just need to stop draggin their feet.  More to come on that maybe my next post. 
     Family wise, things are wierd.  We all seemed to have grown apart after my dad died, which I truly didn't expect.  We all have our own lives, and busy schedules, and at first it hurt me.  So much so that I blew the holidays out of anger and hurt.  They are ok with how things are, so I just have to deal I guess.  Its funny, I do everything right, play by all the rules, and am a pretty stand up guy, yet with my own family, I'm the black sheep.  I'm settling into it now.  I just don't have the time or the energy to chase after people, and facilitate relationships that are one sided, especially now that I am sick.  I love them all dearly, and wish them all the best.  We still get together for birthdays, and some holidays, so I will have to be ok with that. 
     Emily and I are celebrating our 15th wedding anniversary this year, and I am planning a trip for us, as a surprise, and she knows none of it.  The suspense is killing her, but it will be amazing.  She truly deserves it.  She has put her life, her dreams, all on hold to be a mom and wife.  She is amazing.  She's a throwback to mothers from a time when life was simpler, and family was everything, not career.  She single handedly keeps this house and family running.  We've been through some awful times, but have always come out the other side.  Our faith has gotten us through. 

     So, while this was largely and update of the last year or so, there is a point to all this rambling.  Life goes on.  Kids grow and change, relationships come and go.  Life deals you ups and downs, yet through it all, life goes on.  And somewhere in the ups and downs, crazy schedules, changes, hurts, happy times, there is this place.  Its really kind of an inexplicable place- where just for a moment, you can feel this quiet peace.  Its a deep peace, in the soul, almost a satisfaction.  Sometimes it is in the form of an amazing kids concert.  Sometimes its in an outburst of laughter with all the kids.  Sometimes its just sitting on a swing in the backyard, watching, listening.  Other times its that moment before you fall alseep, and recap the day, or let your mind wander to a time when everything was perfect.  It is usually in the before sleep time, I think about my father.  Wishing that all the time we wasted at odds could somehow be reclaimed.  Telling him about how amazing his grankids are.  I still feel like in someways, I still get to spend time with him.  Then I fall asleep, wake up the next day, and wait for those short lived, little moments of peace.  In the midst of all this, life goes on...