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!!!



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

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