My Dancer

Nearly five years ago I found her.  Long shapely legs,  big chest and small waist.  She sat in my lap looking at me with her huge brown eyes and I was sunk I had to take her home with me.  Okay so she was sixteen week old Boxer puppy.  I had been searching for some time to find the right puppy for me.   At first when we came to the conclusion that a mobility dog was right for me I looked into the different agencies.   To buy one outright fully trained would cost more than the down payment on my house.   To get a grant which I was really hoping for is nearly impossible.

Don’t misunderstand.  It isn’t nearly impossible to get a grant for a service dog.  It was nearly impossible for middle aged woman with Fibromyalgia to get a grant for a service dog.   There are many grants out there. There are grants for children,  I praise that.  If a disabled child can start young with a service dog they will do so much better in so many ways.  There are of course grants for seeing eye dogs.  Aside from that there are a few others , however most are connected with Veteran’s Associations.  So if you aren’t a child, blind or a Vet you are more than likely on your own.  Although recently Autism speaks is working grants as well.

Being that I don’t fit those classifications I moved on.  There is the train them yourself route which is the route I embarked on.  Not so much a route as a crazy journey full of fun , frustration, joy , fear, love , and tears.  That’s just the first day.   First you have to choose a breed.  I did a lot of research.   There were many factors that weighed in on the breed I would chose.  You should consider them as well.

  1. Your needs.

a. Is this dog for balance, mobility , emotional support etc…

2. Size

a. This goes along with needs , size vs task

3. Temperament

4. Breed’s Strengths

a.  That’s not just physical, but personality too.  Patience , quiet , calm.

There are more but we can get a feel for it here. My needs with Fibromyalgia and chronic fatigue came in the form of lending me strength. Also helping me transfer,  balance ,and stand.  She preforms more complex tasks we will discuss at another time.  This is where we started her training however.   For these tasks we needed a dog with a strong body.  I am not a large person though so I didn’t need a overly large dog.  Keep in mind that a healthy dog is muscular.    As far as temperament goes I live with a family member that is fearful of large dogs.  In particular German Shepards are frightening to them. That meant I needed to find a breed other than a Shepard.  Labradors are often used as service dogs ,but they are given to hip and knee issues.  Neither is conducive to pulling a chair.   The final choice once all this was considered honestly came down to liking the Boxer breed.   Boxers are wonderful loving fun dogs.  High spirited , loyal , and , smart.

Having said that they take far more patience and work than a lab or a Shepard to train . This is not because they aren’t intelligent,  it’s quite the opposite.  They are highly intelligent , stubborn dogs. Once trained you will find their stubbornness can work in your favor.   You have to get them trained first though.  Before even getting your puppy decide how and where you are going to do that.

We went through Petsmart for Dancer’s training. I know there are people all over that will argue that doesn’t work. In many ways they are right. They are also wrong. What? Let me explain. Dancer was my first service dog.  I will have a much easier time working it out the next time. My hope is to use my knowledge to help others to do the same. Going through Petsmart of Petco for your initial training is fine. It’s one choice that can work really well.  You can work through their levels taking what they call the ” Good Citizenship Test” at the finish.   That will go a long way toward the dog’s training.  It isn’t however required to get your dog certified as a service dog. Some of their employees have been known to tell costumers that it is.  Once they are through that point you will need to hire a private trainer to teach you and your dog the finer points. Depending on your dog this can either be a quick process or a long one.  Either way you will want to have refresher courses throughout their life to keep them active and happy.   The other training choice is to hire a private trainer from the start.   The advantage to that is they will come to you,  you can often train more in depth and more quickly. They can also work on your dogs individual needs.  The disadvantage is cost.  When looking for a private trainer take your time research them carefully.  The first thing you want to know is that they are honest.  The second is they use cruelty free methods , lastly that they are good trainers.

Yes, so before we go any further let’s talk cost. While self training is infinitely less expensive than a fully trained dog it’s still not cheap.  The courses alone will run you a few thousand dollars.  Then you need to consider gear,  extra vet care, time and transport.  The fuel it will take to get to classes weekly if not  more often.   I say extra vet care because they will need to have bordello vaccine to go to training classes.  They will also get sick at least once.  It’s almost a law. Count on having them confound you with some mystery illness that terrifies you.  Don’t worry they’ll be better a day or two later having lightened your wallet.

Gear isn’t as simple as a little nylon vest.   First they have this silly habit of outgrowing things rapidly.  The vest that fit them at six months won’t at nine , the one at nine moths won’t at a year.  Then there’s the various leashes, clips, bags, bridges and etc. The first set of gear you try isn’t going to fit you and the dog to perfection. Life doesn’t work that way.  Chances are parts of the first , second and fourth will work nicely together . However only if you can fine the right clip.   I know I make it sound frustrating , but it’s not as bad as it sounds.  It’s more like trying to find your style.  All in if you decide it’s what you need you’ll make it work.  If I can help you let me know.  There’s more to come.  Next time we’ll talk about various forms of gear.

 

 

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Living It

When I first started this blog five years ago I wasn’t sure what I was doing.  It was a diary that day. I’d never heard of a Blog.  When I wrote my previous post I had the idea I was going to write an informative Blog on Fibromyalgia. Those you can find.  Then over the last few days I’ve been dealing with a flare.  For those of you who have been dealing with F.M. for a while you know what I’m talking about.  Those of you who are new to it,  a flare is our worst enemy.  It feels like all the symptoms of your F.M. have come home to roost at once .  For me all my joints hurt , when I say hurt I mean to move them is agony.  My head throbs and my neck where they removed the disc for my surgery feels like they are doing the surgery all over again.  Those are the major symptoms. There are others that are just too fun to discuss.   

To Survive a Flair.

In my case I’ve found very few things that kill it anymore.  In my youth a combo of OTC pain relief and coffee after a good ten hours sleep did the trick.  To be young again .  Now I have prescription for a mild narcotic pain reliever that I take every six hours.  I stay well hydrated even though that presents it’s own issues .  Lastly I try not to move much.  I find in the cooler months an electric blanket set on low helps to relax the angry muscles.  Not much does it for my overworked nerves anymore.  You have to find the level of medication vs. non-medical relieve you are comfortable with.  I personally try to avoid narcotics but for my own reasons.  I don’t see any reason for others to do so if they work for them. 

What Do You Do For Three or More Days In Bed?

Some well meaning friends have asked me that often.  Some not so welling meaning types have been ignored often.  We’ll talk about them later , maybe.   One answer.  Netflix.  I watch T.V. probably more than I should.   I call it the electronic symptom of the disease.  I wasn’t big on T.V. before I got sick.  Now is a different story.  When I feel up to it simple crafts.  I like to crochet , embroider , sew .  I like to paint.  I spend a great deal of time on the computer.   The truth they don’t want to hear is in an active flare you don’t do much of anything.  You sleep,  you pray if that’s your thing and you try to survive.  

When I’m Not Flaring.

I mentioned in my last post that I am permanently disabled.  This is due as far as we can  find solely to my F.M.  Yes, Fibromyalgia can be that debilitating.  In fact it can be fatal in the same way any autoimmune disease can.   That being said my health is ” fragile ” .  I hate that word but there it is.  I am often bed bound .   So are many others with this condition.  We build a little world around that bed.  Drinks here,  hobbies there,  phone with in reach for the few friends we have left.  The bed has to be just so and so on.   My bed is a Sleep Number which I highly recommend if you can swing it.  It was gift or I would be sleeping on a twenty year old mattress.   Make sure whether in bed or wheelchair, sofa or recliner that you are careful about pressure sores.  If you can get up , when you can get up and  move do it.  Make the effort to get out as often as you can.  I don’t say this as someone that isn’t in the know.  I don’t say this flippantly as a friend who jogs daily telling you “Maybe you just need more exercise. ”   Anytime your body and mind allow it take it.  You will have to rest afterward,  it will take extra effort but you won’t regret it.   Make sure you do something that is worth that effort though.  Don’t force yourself up , get dressed and look your best to go to the Doctor.  You are there to tell them you feel horrible let it show.   When you put in the effort do it for something you want.  Then enjoy being there. 

In the meantime never let them steal your joy.  Find it where you can even in the smallest things. 

Five Years Later.

My Last post was nearly five years ago.  It’s shocking when I read it how much and how little has changed.  Yes the surgery did much to help my overall function in life.  It helped me to use my upper body again , for that I am thankful.   The surgeon thinks it was a failure because I didn’t walk again.  I think he’s a pork chop.  He was the only one that thought I would walk again, I’ve known since very young a day would come when I would sit down and never stand again.  It has only been recently that I’ve been able to admit that out loud. 

In that five years I have discovered many things.  Some of them medical , some of them personal. In these article I hope to examine them all in time.  First however I was diagnosed with Fibromyalgia about two years ago.  That at first made very little difference by my way of thinking.  Like most of the world I didn’t understand the disease for what it is.   My thought was , but what else is it?   Fibromyalgia doesn’t take away your ability to walk,  it doesn’t make you incapacitated for life.  Wrong.  That in the simplest terms is wrong.  In fact Fibro as I will refer to it frequently , because let’s face it Fibromyalgia is a long word to type, is a serious debilitating disease.   First although the medical community as a whole would like you to believe otherwise, it is not something new to the scene.  It was discovered as long ago as the early 1800’s .  A Scottish Doctor discovered that his patients were feeling pain when they shouldn’t.  He realized it was caused by some kind of disconnect in the nervous system even then.   What I am saying is even that long ago he didn’t say to his patients it’s all in your head rub some dirty on it you big baby.  He understood that it had something to do with the way the body responded to pain.  I will get into the history and facts more in the future.  For now I am telling you.  

Stop .  You Are Not Insane.  You Are Not Alone.  You Are Sick.  You Deserve To Be Heard. 

That being said how do you make that happen?  The long and the short of it , the hard truth of it is, you have to fight.  If you can not physically put that fight out then find someone on your side will to do it for you.  If the first Doctor you see rolls their eyes gives you an antidepressant and tells you        ” You know it’s probably just… X Y Z .”  Find another Doctor,  and another and so on until you find one with a brain in their heads and a soul in their hearts.  As a patient you have rights.  We all hear that every time we enter a medical building, but do you really know what that means to you?

Here are some that people usually aren’t aware of.  On top of your medical condition being private, which is important I agree.  On top of having the right to say no to any treatment, also incredibly important. Cornerstone really.  You have these rights.

  1.  The right to know what the Doctor is talking about. I know that sounds simple , but it isn’t.  It doesn’t just apply to not knowing the language.  If he doesn’t make sense tell him so.  Make him explain.  He made you wait he can make the next person wait too.
  2. The right to have your concerns heard.  It’s along the same lines.  You can’t be dismissed as being hysterical.  Yes, I had a Doctor note that I was a Hysterical Woman.  I had nothing wrong with me.
  3.  That goes to your next Right.  The right to fire your Doctor.   Even if you are on Public Assistance of some kind.  Be that Medicaid, Medicare or the like.  You are not a charity case.  That Doctor is getting paid by someone.  If they aren’t doing their job then they shouldn’t get paid.  You would fire your mechanic if your car didn’t run.  Isn’t this far more important?
  4. Most importantly and by far most overlooked in the medical community.  You have the right to be treated with dignity.   No matter your condition or social standing you are a Human Person.  A fellow member of the Human Family.  You have the right to be treated as if you belong here.

Now taking that all into mind you don’t always have a choice when you first find a doctor.  You do however after time with that doctor.  Once you have assessed them finding them unworthy move on.  You will come to one that is worthy though.  I myself had to move nearly two thousand miles from my home town to make that happen.  I don’t suggest being that radical.  It was a combination of life events that sent me packing.  What I found was a Doctor that not only understood my condition , but sympathized and empathized with me.  A rare find indeed.  There is hope don’t give up. 

Getting A Diagnosis

I spent many years saying something was wrong.  My earliest memory on the subject I was perhaps ten.   I got blinding headaches, was stomach turning dizzy.  I’ve never slept normally.  My Mother tells me that started as a baby.  As a young person I learned to adjust.  It became a problem to hide from others when it became clear that no one believed me.  Off and on it got so bad it couldn’t be ignored.  Mom to her credit would try to get answers but there wasn’t much help for people that can’t pay for it.  

As I got older I would just ride out these episodes by saying I had a bug, or I was tired from working too hard.  That was easy to believe.  I worked with children and I did work too hard.  At around thirty I was ready to make someone hear me.  The problem being that they weren’t ready to hear me yet.

I was suffering from depression.   They medicated me for that and that was as far as they were willing to look.  If you can’t understand it deny it exists.  Good medicine? No.  Common?  Yes.   The first doctor I worked with treated me as if I was a overly emotional woman.  For years I didn’t go any further for the same reason my Mother hadn’t.  I didn’t have the means to make them listen.  

Over the last probably ten years it was impossible to ignore any longer.  It started with pain in my lumbar.  I couldn’t walk any distance without assistance.  A cane or crutch at first.  Even then it would come and go.  At times feeling almost ‘normal’.   I learned to deal with the pain or at least hide it.   Over the last five years it became increasingly harder to hide.   It was obvious to anyone observant enough to look.  The ataxia the jolting movement and chronic fatigue.  

As I had so many times before I went to my doctor .   The family history of M.S. weighed heavily on my mind.   My Father died from it, my Uncle did as well.  My little brother was diagnosed at less than thirty with it.  Cousins, Uncles ,Nieces and etc all with neurological issues.  Her answer to me was rest more, we’ll increase your anti-depressant.  I doubt it’s anything (Roll her eyes).   

I didn’t give in ,I wasn’t giving up again.  It progressed.  Now I can’t hide it.  The headaches, god the headaches were so bad I thought my head was cracking open.  I tried again.  Her answer?  You’ve complained about this before are you sure it’s not your depression?  THAT WAS THE FINAL AHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!

I’ve complained of it before therefore it isn’t a problem?  WHAT?  I admit yes I was depressed.  Feeling like your body has mutinied on you will  make you depressed.  Being in screaming pain and having people behave as if you are lying will make you depressed. I can’t stand for long without pain.  My legs got weaker, my back twisted with pain ,I couldn’t feel my feet but they always hurt. My joints felt like they were breaking. I told my doctor these things one last time her answer?  I wouldn’t worry about it.  My left arm is numb and I can’t use my fingers.  I wouldn’t worry about it. Shake your hand until the numbness passes.    Then the final event the defining moment.

I was in so much pain that Mom had to rush me to the e.r. Not once, not twice several times.   They did x-rays, ctscans , M.R.I.’s.  No answer but it was clear now I wasn’t insane I wasn’t playing for sympathy.  I was in trouble.  Something very frightening was happening.  The e.r. doctors were at a loss to explain but they didn’t dismiss me.  I went to two doctors they referred me to.  

One a neurologist, one a internist a resident.  The first the neurologist said yes it’s neurological. She was intelligent enough to admit she couldn’t answer the question of Why?.  The second told me I was lying for narcotics and he could refer me to Adams Co mental health.  I managed to leave without ripping his head off.  I was sitting there in a wheel chair in pain that the narcotics didn’t even touch and he was using the party line.  ( It’s All In Your Head)

Turns out he was wrong in more than one way. I wasn’t faking, I don’t take narcotics now and it wasn’t in my head.   The neurologist helped me get Medicaid, then she helped me get answers. Suddenly they were interested because they could get paid.   She referred me to a neurosurgeon.  He sat down with me and thinking I knew what was happening.  He explained a surgery that he said would help with some of the problems.  I was dumbstruck.  I left the appointment with a dear friend too shocked to speak.  No one had even given me a diagnosis.    Two weeks later Mom and I met with him again.  

Now he was aware that I was totally uninformed.  He explained with extreme patience.  I have a congenital defect of the spine.  Surgery would help some of the pain and a few of the issues .  It was enough to be worth it.  By then the numbness in my arm that I shouldn’t worry about was full blown paralysis. My left arm would no longer move.  My left leg might as well have been gone.  

I wish I could say the surgery made me whole.  I wish I could tell you it’s all better now and I got on with my life.  The truth is I am a paraplegic.  The good news if there is some is both my arms function now.  I can use a wheelchair rather than a electric scooter.  The pain while still with me at times is usually manageable.   It’s not the end of the story, or even the end of the medical fight.  It’s a good start.  I have some answers.  Best of all being that I can say with all sincerity that it’s not in my head.