Twiddler's Syndrome

Have you ever had a pacer or other surgery.  No matter what you do you can't keep from touching it.  I know that this is something that has happened ever since my Enterra device was inserted n February.  It seems to hurt all the time.  At the site of the pacer.

So I have a tendency to rub or pat it.  Then I found out that there is this crazy thing called twiddler's syndrome.  Amazingly this is when someone has a surgery or pacer and they twiddle with it.  Let's just say I have become a twiddler.  I have no control over it.  It is like my side draws me to it and it has to be rubbed.

The problem is that the twiddling or fidgeting of the pacer can lead to serious complications.  People have actually had pacers moved because they mess with the pacer.  In fact, it is one of the warnings in the manual.

So for right now I haven't figured out how to stop twiddling with the pacer.   I have a feeling that knowing about the condition has helped a little.  But it is hard to break a habit that you have started.  It is like a bad habit you just can't stop.

So if you discover that you have started this.  Then consider trying to break your habit. If you can stop it before you start the better off you are.  So here is my first suggestion whenever you go to touch it think f I do this I might have to undergo surgery again.  Because you can dislocate the pacer to the leads.  

Secondly, always remember that the more you touch it the more you will continue to do it.  Encourage your supporters to point it out to you if you are twiddling.  The more people to help you stop the better.

So my update I am consciously not doing now since I know about it.  Every time my hand goes to the side I take a deep breath and remember to stop.  Then lastly, my friends and supporters see me and they say hey you is twiddling.  I feel so guilty that I stop and then do not go back to it again.  

Well,  there you have it something you probably never heard about.  But, if you are like me you been doing it for awhile without even realizing it.  So enlist friends do the research and see if you can stop it before you unintentionally dislodge your pacer.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve. 

Riding the Water Wave

This must be what is happening in my Ear

Who needs a water ride when you have one in your ear everyday.  Well as you can tell there has been a delay in post this week.  I love the fact that you never know when you will hit the rapids and start a spin that knocks you off the raft for a few days.  This week has been one long ride down the rapids.

Today I wanted to go into more detail about Meniere's Disease.  This illness was diagnosed in the 1800's.  Just think about it physicians have known this disease for 150 years and there is no cure.  In reality there is only guesses what causes the balance issue.  Even more upsetting is that no one knows why this happens to people.

Before any illness can be cured people have to know what causes the system to go bad.  Yet, this disease seems to be one of those that physicians still use old medical treatments to cure.  Now I say this because if you look at medicine over time you will see that the final solution is to remove what is suspected to cause the illness.  The last step to curing the disease is a vestibular neurectomy, or in layman's term removing the balance portion of the ear.

Like many illnesses there are varying degrees of Meniere's disease.  Mine personally has gotten to the point that I have lost my balance at all times.  I also have daily attacks of vertigo.  The most frightening are those which are known as drop attacks.  In this type of attack the person affected needs to lay down immediately for the vertigo to come to a stand still.

Two days ago I had one of my worse drop attacks that I ever had.  It took two people to get me from my front room to my bedroom.  My whole mind was spinning.  Then when I laid down I felt as if I was falling off the bed.

When I explained this to a friend they said that must be like the times when a person gets so drunk that they lay on the bed with one foot on the floor.  I responded with yes, but imagine that times 100 and not only is your head spinning but you balance is gone.  You body doesn't feel like your own.  In all reality all you can do is pray that the world stops so that you can get back into your own body.  Because with drop attacks you do not feel yourself.

So there you go hope you are not riding any rapids today.  I still feel off because of this last one. Short and sweet if you have one of these attacks lay down.  Take your medicine you can also place an ear plug in the effected ear.  I find it amazing that the ear plug helps drown the tinnitus.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.