Tuesday, August 19, 2014

Validation

Before I get into the actual subject of my post, I noticed the other day that while I've been not sharing our actual identity since I began this blog over a year ago, I hadn't turned off the feature that showed my real name at the bottom.  Whoops!  LOL.  I guess using fake names is kind of out at this point so before I go any further, I figured I'll go ahead and let any readers know that my name is actually Justin.  My wife is Shawna not Marilyn, my step-son is Caden not Jimmy (though his getting himself in hot water like Jimmy Neutron still stands) and our dogs name is Kane.  From here forward I figure there's no sense in keeping it quiet since more and more people are associating the blog with me anyways.  Who knows, perhaps I'll actually share it myself at some point..

So, back to the topic at hand.  Because of where we live, Shawna is involved in the ARCH program which means that essentially the VA sub contracts out Dr.s for her to visit closer to our home since we live 250 miles away from the nearest VA hospital (Togus) and about 200 miles away from the nearest VA facility (Bangor).  This could and is changing for everyone I believe as a new law that's passed will allow military veterans to see Dr's outside the VA if you live further than 40 miles, but it hasn't yet.  Anyways, this is how we ended up with her last neurologist, the one I was bitching about a few months ago.  Thankfully she left and is no longer practicing in the area so we don't have to visit her ignorant ass ever again.  This left us with an issue however.  My wife had no neurologist in the area.  So, the VA scheduled her to go to Togus to see the one she had previously.  Being that it's a 500 mile, 10 hour round trip we'd decided to cancel said appointment but as of Thursday hadn't yet done so.

Then I spoke to our home care nurse on Thursday afternoon...I'm so very glad that I did!  Shawna and I had been discussing for awhile going outside the VA to get the opinion of someone not associated with them.  If I have to tell you why we felt it may be a good idea to do so, please do yourself a favor and google 'VA scandals'.  With this in mind we decided to take some advice and see a certain neuro located in Presque Isle and to cancel the appointment at Togus on Friday to save the headache that is traveling that freakin far.  However, after speaking to our nurse, we decided to make the trip.  We'd be seeing her old Dr, the one she had when she originally arrived back in Maine, and if nothing else we'd be in a better place to get her the second opinion from the neurologist in PI.  It was the best decision we could have made!

I, and I think my wife as well, entered into the appointment very apprehensive.  Our last appointment with her a year and a half or two years ago hadn't gone particurally well and I left there being quite pissed off.  It was the beginning of my experiences hearing the term "pseudoseizures" thrown about with no real evidence other than they couldn't figure the cause of her symptoms.  I was expecting more of the same and figured the appointment was going to take about 20 minutes and then we'd be on our way annoyed we'd driven so far to hear a bunch of bullshit...Now, if there's one thing I was taught it's that when you're right you stand your ground and when you're wrong you admit it and take whatever necessary actions are required.  Thankfully, in this case a simple admission will do.  Because, boy, was I ever WRONG!

Our appointment was nothing short of amazing!  By far the best doctors appointment I been to with Shawna.  What we were saying was being listened too, she was answering questions before we could ask them, she was giving us information as to what possible problems there may be, we have four or five new tests that Shawna is going to be taking. AND, I think best of all for my wife, the doctor was believing the things she was saying!  I was floored and excited at the same time.  When I described Shawna's seizures she listened and said, and I want to quote this, "those are not pseudo seizures.  Those are tonic."  I was so fucking happy that someone finally listened to what I had been saying for two years I almost hollered"'WOOOOO HOOO!" And for my wife to be validated, well that felt equally as good as I swear I saw about 50lbs fall off her back.  Apparently in the nearly two years since our last visit to her, she's had multiple people come in from Shawna's generation of service with similar symptoms.  This led her to the conclusion that while a single person experiencing these health issues could possibly be psychological in nature, to have multiple people complaining of the same problems pointed to something else entirely.  It was a validation for my wife that she definitely needed.  And to top it all off, not only did she not chastise Shawna for using natural supplements to help with her pain, tremors, and seizure prevention; she encouraged her to continue and actually asked for more information about them and who makes them so she could do further research!  Never in my life have a seen a doctor of any kind do that.

So, where are we going from here.  We'll be going to see another neuro that's located closer to us  to get their opinion as well.  We'll get Shawna signed up for the testing though it could take awhile because with Caden starting back to school this week it's difficult to make trips where we could be gone for days unless he's on vacation.  She'll continue with the natural treatments and take what tests we can arrange locally and both of us will push forward with our own research so we have questions to ask when we attend appointments.  Though there is obviously still no diagnosis, for the first time since I've met my wife is feels as though there is some hope at the end of the tunnel.  And that, that is one hell of a great feeling.

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