Baclofen Pump Refill

November 10, 2008

I have had my baclofen pump for about three months now.  It has made a huge difference in the quality of my life,  in the quality of my family’s life.  The other day was refill day.  This is the first time I had to have it refilled.  Someone recently asked me, if I had my refilled yet.  When I said no, they replied, “Oh, just wait.  That’s an experience.  Just wait.” Oh, great, I thought. That doesn’t sound fun.

But then I realized, it can’t be as bad as the surgery, or living with severe spasticity.  I thought maybe like most things people embellish for who knows what reasons. Still, it did make me a bit apprehensive. 

So, I arrived bright and early for my appointment.  I awoke at 5:30am so I could shower, have coffee, eat breakfast, get my family out the door to work and school, so I could leave on time for the hour and a half drive to my docs.  I really hate early morning drives.  It sets off vertigo whenI don’t have enough time to adjust to being awake. I don’t like driving in the early morning.

Well, it is a procedure for sure to get the pump refilled.  Not a bad procedure, just a procedure, especially the first time.  Seems there’s a first time for everything. The doc needs to find the tip of the pump so they can line up the template. The template finds the center of the pump which holds a small area in which a needle is inserted to first draw out the remaining meds then fill the pump with the new meds. Sounds easy enough. But, finding the tip the first time can be tricky.

The doc needed to really press and feel all round the pump. This is not a gentle operation as the doc needs to feel below the skin into the fat layer to find the outline of the pump.  Seems the tip of my pump is up under the ribs. Things got much easier when I told the doc how everytime I bend down I get a sharp shot to my ribcage. So, she proceeded to feel under the ribs for the tip. You can imagine how much fun that must have been. 

So once the tip is found and center marked. My mid-section is draped with a sanity cloth(has a hold in the middle for access to the pump) and the skin all around the pump is painted with the heavy thick yellow sanitizer. Pretty simple so far.

The doc got the needle and meds ready. Then told me I’d feel a pinch. I’m thinking like getting your blood drawn-a slight pinch. Well, the doc never said ‘slight’, I added that. It was quite a pinch. Just a point I am ready to say, “Hey, that’s beginning to hurt maybe something’s wrong,” it stopped. The needle found the pump reservoir. A few moments later and I was being cleaned up. All done. Simple as that.

It was sore for a few days. I guess it was to be expected considering there was a fair bit of manipulation around the pump.  All in all a pretty simple, easy procedure. I thought I would share this because when I spoke with others I got negative feedback about the experience. And I am not sure why.  Granted it is a bit more than having blood drawn, but only a bit more. Easy and simple.


Coping with Anger

November 4, 2008

So there I was angrier than I had ever been.  Anger ran deep inside me, to the very center of my bones, washing over me like baptismal waters. Once my anger publicly surfaced, I had to do something about it. Funny thing is I know, have known for a very long time that the only way to effectively deal with something is first to admit it.  Can’t fix a problem that doesn’t exist. 

I am not sure why anger is not on the list of symptoms of multiple sclerosis, or really any chronic disease because it is always there.  Anger accompanies diseases.  They walk hand in hand down the aisle. But that is one marriage I wanted no part of, didn’t even want to attend the wedding.  

I had to admit that I wasn’t in control. No one was in control. Life happens.  I rather despise that cliche. But it is true. Stop and look backwards.  My guess is no one’s life really turns out exactly like they expected. Again, it is the expectations that make us suffer. I mean you don’t have to a disease to feel anger, we all feel it, we all suffer from it.

How do you relieve the anger?  That is the question. How do you relieve the constant battle in your mind that says, “Hey, it’s not supposed to be this way?”  For me, I had to accept that this is the way it is; I have atypical multiple sclerosis. Ok, so what?!?Does that mean I can’t live anymore? NO! Does that mean my life is not worth living? NO! 

Simply put it means I have atypical multiple sclerosis.  I am still a mother, wife, woman, sister, daughter, friend. So I have vertigo, fatigue, spasticity, etc. You know the drill. I am still myself. I can still enjoy my life, find happiness, experience all that life has to offer. Yeah, perhaps I experience some rather unpleasant symptoms, but that is not my whole being for my whole life. 

I found that when I accepted that these symptoms were now a part of my life, I wasn’t so busy thinking this or that shouldn’t happen.  For example, spasticity.  My legs felt (before the baclofen pump) like two cement pillars. When I tried to walk I felt like I was trying to drag these cement pillars through a muddy bottomed lake.  I would think, this is not supposed to happen. So not only would it be difficult to walk, but I would be internally struggling trying to get back to some imaginary idea of proper walking.  When I said, “Hey this is the way I walk now. It just is my way of walking.  I won’t walk like this forever, it will change,” I no longer struggled internally.  That was a big relief.  Did I walk any better? NO!  Was it easier to walk? Not physically, but mentally it was much easier.  I no longer carried the burden of trying to fit my square situation into the round hole of life. 

With that burden lifted, I began to see, experience, feel the wonder of life again. So, we talk all about the difference of relapsing remitting versus chronic progressive multiple sclerosis, or cytoxan, or having a baclofen  pump implanted, but the real key to dealing with chronic disease is to realize life happens.  It is only when we stop imposing our ideas of what should be that we find happiness.