Tuesday, December 31, 2013

Frustration with the World of Medicine

Over the course of our many visits to various doctors we've faced frustration after frustration in our attempt to get answers.  However, before I get too far into this post I feel as though I should first preface the following sentences by stating that I really don't have much faith in the world of medicine.  It's not that I don't think doctors are needed or that I don't think many of them are good people; I see a flawed system that is set up to fail from the outset because it's based on the premise that it's ok to treat symptoms rather than causation.  Personally, I very rarely visit traditional Doctors.  Unless it's an ER visit or something small that I know I simply need medication for (of which most likely I will only take until the symptoms recede), I don't go.  Sure, at some point I'll most likely go in for yearly or bi-yearly physicals and for the dreaded finger test but I'm not there yet and instead have decide to take my health into my own hands.

My preference is holistic medicine and traditional remedies for every day issues.  I've never had a flu shot, I don't have a family Dr., and I have no prescriptions taking up room in the medicine cabinet but as I believe I mentioned before, I do have a chiropractor friend that I can visit when I'm in the area for adjustments or contact otherwise if I'm having an issue I'm having trouble diagnosing or treating.  Some may consider this nuts but considering I spent $1,500 dollars for 3 Dr. visits and an MRI for a problem she diagnosed in 5 minutes during a $40 visit (without an MRI or any other technology), I'll take my chances with this unconventional approach.

Ok, back to the post at hand.  A few weeks ago Marilyn and I made a trip to see a new neurologist for her first meeting.  As I stated above, my biggest issue with today's medical profession is treating for symptoms rather than cause.  I think my second biggest issue is simply relying on the opinion of previous doctors over the information the patient is attempting to tell you.  Unfortunately I feel this is becoming a norm when dealing with her issues.  Now, it could be that the neurologist was simply attempting to get background and nothing more today so that she can develop a course of action leading into the next scheduled appointment but when you've seen this similar pattern previously it gets frustrating...extremely fucking frustrating.

The following appointment I really had the opportunity to see what was up with this woman.  She'd sent Marilyn and I to an appointment at a hospital in Bangor (4 hours away) for an EEG the month before.  Rather than have a complete EEG done where she would stay in the hospital and be monitored, they hooked her up and sent her home for the weekend.  It didn't make sense to me but she's the Doctor not me so I went with it.  When we went in for the following appointment after that EEG she reiterated what the Army docs had told her based on her file and the results from that single test.  She was using that test as a be all, end all for her diagnosis.  When I questioned her on it (EEG's done outside the scalp are only able to detect seizure activity a short distance into the brain.) she continued to throw out the term 'pseudoseizure'.  When I informed her that I'd been doing a serious amount of research about the difference between a pseudo and grand mal seizure, including watching videos for comparison to what I've seen, she became indignant which in turn pissed me off and I think she knew it.  At the end of the visit she didn't even come back in but rather sent her charge nurse to bring us some paper work.  Paper work that included information on PTSD....Like I don't fucking know about PTSD.  To really cap things off though she took Marilyn off her seizure meds...at at once!!  She simply didn't allow the script to be refilled.  What kind of Doctor doesn't ween their patients off meds like that to ensure their safety?  Needless to say after our experience with her as well as learning from our home care nurse we're not the only ones with similar experiences, we're not going back.  At this point we've decided to wait until we move and can get in touch with some REAL neurologists not this fake collecting a paycheck we have up here.

The truth is no one seems to know is going on.  The Army listed her as having pseudo seizures which is basically the minds way of shutting the body down (google it for a more in-depth description) and has some similar symptoms to epileptic seizures.  SOME similarities being key here for while they have things in common the differences are pretty drastic. Being involved and presented with the on a daily basis, I took some time to look them up so I would be aware of what to look for.  Contrary to belief most pseudo seizures aren't controlled by the individual having them but they can be helped with psychological treatment and counseling over time.  Realistically, I'd be ok with the diagnosis if it would help her not only with the seizures but also with her memory issues, neuropothy in her legs, and daily tremors.  At least a course of action would be being taken toward attempting to help her rather than just waiting for the next issue to arise.  However, as I become more educated on neurological disorders, issues, symptoms, and the like, I feel as though many of these people are simply relying on the chart rather than asking questions of both Marilyn and I, and are making limited efforts to answer questions on their own and are instead listening to someone else's opinion.

For those reading this, this is not simply a VA issue though they certainly have their horror stories from around the country.  At our location we're dealing with the VA some but for her specialists we're in a different program because it's more cost efficient than having us make 6 hour trips constantly.  It's both easier on us because it's cuts out travel down significantly as well as more cost effective for the VA because they're not having to pay travel costs for the roughly 450 mile round trip.  So, while we're dealing with the VA, it's on a limited basis.   These experiences have led us to the decision that once we move we're going outside the system and are going to look for a neuro who'll look at her case with fresh eyes.  It's to the point that we're not even going to take or have her history sent to them.  Everything they hear, at least in the beginning, will be from us.  Later, if they want something we'll provide them with it but in the beginning we want someone who's going to have actually take the time to look at things and develop their own opinion.  We've also just met someone with a sever case of Lyme disease and have decided to pursue testing for that as well.

I don't know if it's always been like that, but it seems to me that if there's no money to be made, the medical profession doesn't really give a shit about patient health or care.  It makes sense in a way.  The longer you're sick, the more money that can be made off you.  Sad that I even have that thought but my own experiences combined with the stories floating all around have led me here.  I sincerely hope that we can find someone who's willing to take on her case and really look to solve it.  If that day comes I'll use this blog (though it's rather small at the moment) to promote that person like no body's business!  I want my wife to get well.  I want others suffering from sever conditions to get well.  And most of us, I want our medical professionals to stop treating symptoms and begin treating ailments.   


I'm not normally huge on resolutions but this year feels a little different.  At the end of the past few years I went into the next year hoping things would be better.  As I'm writing this today I feel as though this coming year is going to be exciting and full of possibilities.  Last year wasn't bad, don't get me wrong.  I outlined some of those highlights in my last post so I don't feel the need to regurgitate them here but man, for whatever reason I'm excited.

As I'm pretty straight forward and to the point, I won't prolong this any longer.  However, know this is not my full list of goals and resolutions for the year but only the ones that pertain directly to the family and this blog.  So, without further adieu, my goals for 2014!

1.)  Be more consistent with my blog entries.
     I've been lacking a bit in this department for the past few months and to begin the year I'm hoping to be more on top of it.  Be expecting to see a few posts within the next few days as I post what are now drafts so I can clear my board and begin fresh for the new year.

2.)  Find, purchase, and move into a new home.
     This is high up on both Marilyn and I's list.  Moving further south and into a home better suited for us will allow us to be closer to better Doctors, my family, Jimmy's family, and other services we're anxious to take advantage of.

3.)  Quit chewing tobacco.
     I know many people who have the goals to quit tobacco at the beginning of every year.  This would benefit both myself and the family now and in the long term.  Kind of a now brainer after spending more than 15 years doing it.  (I'm 30 by the way.  Half a life on this shit is enough.)

4.)  Continue and take our change to a healthier lifestyle to the next level.
     We're changing the way we prepare food and our exercise habits.  Marilyn is looking to get back into yoga and for now I'm jumping back on the Rush Fit DVD's until we do get moved and I can join my friends back at the gym.  We planning and preparing meals ahead of time to save time and money because we won't be throwing away as much food.  Eating out is going to become extremely limited as well.

5.)  Finish my first novel.
     I've been working on the damn thing for the past 6 years.  I was hoping to finish the initial draft before the end of this year but I've been so busy I haven't written in the past 6 months.  It's time to open that baby up and get it done.  I know the editing process is going to be time consuming and if I ever want to get started on my new idea for a novel I need to get the first one done.

So there they are.  Not a huge list but things that are certainly within the realm of accomplishing with a little time and effort.  What are your goals or resolutions for 2014?

In closing, please be safe if you're going out tonight.  Call a friend or a cab and don't drink and drive.  Have fun, live it up, and enjoy all the simple things!

Thursday, December 19, 2013

Years End

It's coming to the end of the 2013 and what a year it's been.  It's a year that saw me marry my "Love Monkey", become a step-dad, have Jimmy move up to live with us, become a hockey parent...and that's all in the past few months!!  At this point I'm not even sure what happened at the beginning of the year because I've been so busy with all the life changes lately!  HAHA.  It's caused me to run around like a chicken with my head cut off at times, fall behind on my blog entries; laugh, smile, shut down, open up, and at times generally feel like I'm losing my God damn mind....and this was all separate from the day to day goings on with the wife's up and down health issues.  It's fun when it's done but sometimes it's a wonder I have any hair left.

As I'm writing this Christmas, is only a few days a way.  I'm behind on everything.  I need to purchase the rest of my presents tomorrow if the weather cooperates  (And before you judge the fact I'm behind, my credit card info was stolen and I was without access to my checking account for the past two weeks because my bank is four hours away.)  The other things; those can be considered my fault however!  I have things I need to finish building and making, I haven't wrapped one thing I did purchase, I have a house and car in need of cleaning before we leave to have the holiday with my family, and I have paperwork I need to finish and mail out ASAP.  Marilyn's health has been up and down constantly, because of the way the house is set up and because we live in such a cold climate it's necessary for one of us to be to up all night watching the heat sources, and sometimes I feel like I'm on the run constantly for Jimmy's hockey practices and games.  (If you're a hockey parent, you have some notion of this kind of schedule)

However, even with everything going on, IT'S CHRISTMAS TIME!  I love this time of year for a variety of reasons.  For me the season is much more than simply presents under the tree.  It's a time set aside for family where we can all enjoy one another's company and look back at the previous years trials and tribulations.  It's also a time for hope.  Magic can happen during this time of year, at least it seems that way to me.  I like some of the sappy Christmas movies as I think they have a certain inspirational quality.  Sad to say, it's one of the few times during the year when my faith in humanity becomes absolute.  A little strange, I know.

It's also a time of year where we can look forward to hopes that the next year will or may be just a little better than the previous one.  If not necessarily better, than different if it suits you better.  It's hard to imagine a better year for my family but it doesn't change the fact we have some things we're hoping to improve on.  We're looking to purchase a home further down state.  This will enable many things for us depending on the location.  Marilyn can finally have the pottery studio she both wants and needs.  I can hopefully start a Christmas tree farm and go back to work.  We'll be closer to Jimmy's family.  And my friends and family will be within visiting distance.  Together with that I have hope that next year we'll figure out what's going on with Marilyn's health.  This hope is not currently based on anything particular that's happened but it's a hope I'll have at the end of every year until the puzzle is solved.

This was just kind of a quick "here's what's going on since I haven't written in awhile" post.  I'm hoping that once we're back from holiday I'll be back to posting on a regular basis.  First up for 2014 will be a "resolutions" post.  Stay tuned!  Merry Christmas, Happy Holidays, Happy New Year and don't forget during this time of year to remember the simple things.  :)