Why we are staying home tomorrow...

Tomorrow we were headed out to Maryland to see a Neurosurgeon for me who specializes in Chiari and EDS.  I have to be honest this appointment has been looming over me like a bad dream.  I have heard amazing things about the doc, so it was not that.  I just had this sick feeling...the feeling you have when you really do not want to do something.  First it is a long drive, plus the expense. We are in the middle of moving.  This doc is not covered by insurance.  Just to see him is $600.  And the biggest reason....I do not want another surgery.  I really have felt that surgery is not the answer for me right now.  

Thankfully God must have been thinking the same thing.  I met with an awesome pain management/neurologist last week at the Cleveland Clinic.  I will say right off I was very nervous about this appointment.  I worried he would not hear me or worse not help.  Before going in I just prayed that I would hear him and he would hear me.  It was one of the best, informative appointments I have had.  No we did not see eye to eye on everything, but we both took the time to listen.  

I am not going to go into great detail but wanted to give the basics.  He feels like I am having several different kinds of headaches.  I agree.  He thinks I am having some nerve related headaches in the back of my head into my ear.  These are related to my surgery.  He feels like I am probably having some chiari related headaches.  And he feels I am also having migraines.  I was not sure about this.  I have had migraines in past but they have never felt the way my current unidentified headaches feel.  He explained that a person can have various types of migraines over their lifetime.  He also felt like I may be having headaches due to the pain meds I am on.  This also makes sense since I do not tolerate pain meds well at all. He would like to focus on the migraine type headaches, and pain med related headaches first.  The Chiari and Nerve headaches will be slightly more complicated.  He also felt the moldy environment is contributing to my overall poor health.  

The first thing he wanted to deal with was my pain due to my EDS.  I take the pain meds to help with the extreme ouch in all my joints.  He recommended a med that will help inflammation and will help me get off pain meds.  He gave me a schedule to help me to safely come off pain meds.  He also prescribed a steroid to help with the headaches as I come off them.  The next step was to try a migraine med on the headaches that might be migraines.  He also wanted me to start magnesium as this can naturally help migraines.  Other things he recommended- physical therapy, massotherapy, and water therapy.  I need to get some weight off so my joints can be healthier.  What I loved the most is he said his hope would be that I could eventually manage my health through PT, exercise, and eating right!  My kind of doc!!  I would love to kick the meds to the curb!  

We talked about other ideas for the nerve and chiari headaches.  He really believes though getting these other things under control will only help those issues...plus he wants to focus on certain things.  I could not agree more.  He strongly encouraged I wait for any kind of surgery until we get my pain under control.  Again totally agree!

The drive home I chatted with my mom and felt right away I needed to postpone the trip to Maryland.  I have felt on edge about it for awhile now.  The doc in Maryland will be there in 6 or 8 months if I still am struggling.  I want to do this right!  I want to have the possibility of no new surgeries.  And I am happy to report some awesome news!  The med for my EDS pain is A-Mazing!!  I have literally no pain in my joints! None...not even when I get up in morning!  Plus much of the clicking and subluxations I was having are settling down.  I do still have bad neck pain and some lower back pain, but seriously....I am thrilled not to feel like I have a 90 year old body!  I have had a few headaches.  One went right away with migraine med.  The other 2 have not.  But I am confident with time we will get the headaches under control.  Another cool part is I have had NO pain meds since Friday night!  WOW!  No not everything is fixed, and I will need more time to figure this all out.  This, this healing is why we stay home tomorrow....to move forward and not look back!  

Crazy Little Thing Called Love

Your watching a romantic movie....it is the time in the movie when the 2 leads realize they are destined to be together.  Everything falls into place, the loves fall into each others arms, the music starts, and the story goes on happily ever after.  You wipe away the stray tear from your cheek and sigh. Yeah that is totally not how it happens in real life.  I mean maybe things start out all romantic (not in my case!) but trust me it will end fast!  True love stories are hard, dirty, and rough.  Some days they will make you cry, and others scream really really loud.  But the cool part is you have another human to be there, in the dirty trenches, crying right along side you!

Yesterday Tim and I celebrated 12 years.  You want to know what we did?  We went out for a late dinner on Saturday because hubby had to work late.  Got home, I was way to tired to sit upright on couch.  Hubby carried our TV into bedroom to watch a movie.  We fell asleep.  No romance, no music, just sleep!  Since no kids were in the house we slept in.  In fact, I was so sick I spent all day in bed.  He cleaned, and rested.  Kids came home late because my amazing parents kept them all day!  Snuggled with kids and sent them off to bed.  That was our anniversary.  And that my friends is how we roll in our home.  Nothing fancy, nothing special...but it works!

When I first met Hubby I was unsure. He did not seem to talk much.  I mean he was cute, but thought I would let him pursue me.  So a year later (yes girls, a year) he asked me to go with him to his friend's house for a party.  Like any smart girl would do I asked my friend to follow us just in case Hubby was a psycho killer and decided to dump me on side of road.  Thankfully he was not.  A few months into dating Hubby said he wanted to break up with me.  I very calmly asked why.  He said "I dunno."  I told him that was dumb and unless he had a good reason we were not breaking up.  And here we are all these years later.  Ah can you feel the budding romance in this story?

If you are waiting for the part where he swept me off my feet....well it is coming.  I am very practical.  Most girls may be drawn to a man for his views, his looks, or possibly even his money.  Hubby likes to bring up all the time what I find is his most valuable quality...his stable job!  Yes folks it is true.  I fell in love with Hubby because he was a job holder.  And when I met him he had his job for several years.  Now many of you know we have dealt with job loss over the years.  Hubby never lets this keep him down!  He will be out there looking for something else to support his fam.  See for me it is not because I want to be "supported".  I loved working and having a career.  I just wanted to make sure Hubby was not a lazy person I needed to worry about.  He has shown time and time again how much he cares for us by long hours, working in not so great jobs, and driving long distances.  This is love! Not fancy flowers and expensive dinner love but "if it puts food on my family's table I will do it" love.

In the movies and tv proposals are over the top.  Men put great thought into where it will happen, how they will ask, and even who will be there.  Honestly I had half a mind to just take matters in my own hands and ask him.  But I waited patiently until he planned it all out.  One night while visiting him at his duplex...we each lay on our "own" couches. Even back then I was not much for cuddling.  I liked my own space, so we each had a couch.  We were laying watching ER.  At a commercial break Hubby came next to my couch and said, "Hey ya wanna get married?"  Now how could I possibly refuse?  Of course I said YES!

When we said "I do" we never dreamed what our life would hold.  We hoped for a nice house, healthy kids, and great jobs.  Just because it did not turn out this way we never questioned each other.  Loosing a job, watching your baby have brain then spinal surgery, having to move away from family, having to give up a career because of poor health, saying good-bye to your home because it is making you sick, and watching your kids deal with chronic illness everyday gives you shared bond that is hard to even explain.  To top all that off, laying in bed why your Hubby washes dishes, puts kids to bed, and cleans up house after working a 10 hour shift is humbling.  He comes in and in a sweet voice says, "Do you need anything?"  He wipes my tears at 2 am when the pain is so bad I can't sleep.  He strokes my back when I have nothing left to give and assures me it will be ok.  He tells me I am beautiful even when I have gained 40lbs, and never do my hair.  He reminds me this life is precious and we are a team.  A team that fights, that hurts, that yells, but a team that rallies together and pushes forward...always!  This is my love story and I am thankful it is just a little crazy!