Baclofen Pump Refill

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

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.

Anger

Anger seems to be a byproduct of chronic diseases. I haven’t met one person yet who has never felt or shown anger. Now add the stress of a life changing chronic disease and anger sprouts; grows better than flowers surrounded by manure.  Sometimes that, flower surrounded by manure, is exactly how I feel – not in a good way. 

It is this anger that really surprised me. As you know, I spent a while and several docs trying to get diagnosed, trying to get help.  So when for various reasons these docs would not help me, I felt anger. Angry that these learned people refused to help me; I know if they refused me then they also refused to help other people. That made me angry. After I didn’t got to medical school, take the Hippocratic oath: which basically says if you can’t help then don’t hurt. 

So when you need help, you reach out to someone who can help you and they refuse, you normally feel anger. That anger I knew. We are always getting mad at someone. There is a perceived valid target for the anger. Logically, we know that anger makes no sense, isn’t helpful, and isn’t productive. But anger is a response we are taught and feel righteous expressing at someone or some situation.

But that isn’t the anger that surprised me. That isn’t the anger of chronic disease as I know it. Within six months I went from a snowboarding, mountain climbing mother to a couch potato unable to move due to weakness, fatigue and spasticity. So you say, well thats a situation worthy of anger.

Yes, maybe, but I was angry at other people and it surprised me. The first time I exhibited this anger and surprised myself, I was a passenger in a car driven by my mother.  And true to statistics-most accidents happen within a mile of home-my mom was driving me home and we were about three quarters of mile away when I witnessed it.

It was a woman jogging. A woman jogging and listening to music while pushing her baby in a stroller. A sight seen on most streets everyday-typical. Only I was dealing with atypical multiple sclerosis.  Watching that woman jog toward our car, or our car careening toward that woman, all I could think about was how much I hated her. How much I hated her because she do something I could no longer do. How much I hated her because she will get to run around with her child AND I couldn’t anymore.  I blurted some expletives that catching my mother by surprise, catching me by surprise. The depth of that anger embarrassed me, caught me off guard.  I guess I must have been feeling it but didn’t want to admit it.

It was that anger, that much anger at someone I didn’t know, doing something they thoroughly enjoyed that didn’t hurt anyone, that changed my life. Changed my life almost as much as MS.

I reflected on that anger for awhile, wondering where it came from, why did it come out at that moment, how to rid myself of that anger. In order to rid myself of that anger I really needed to understand it. Before MS I would roll with punches. Don’t get me wrong, it wasn’t like I didn’t get angry. I did. But I would adapt and move on. This time the anger scared me, it was unprovoked, aimed at an innocent person, and I had trouble controlling it.

That one moment in my life changed me. I felt like atypical chronic progressive multiple sclerosis had robbed me of the rest of my life. I had to admit that and it’s tough trying to be mad at a disease, I mean the disease is in your body, it is a part of you. What are you going to do-be mad at yourself for getting a disease you had no control over.

See that’s the rub-expectations. Seems when I don’t have control and things spin in a direction that is unexpected anger happens. So, that one moment of complete hatred and anger at that woman innocently jogging with her baby changed my life. I still have ms, I still have a chronic disease, but it put me on a path, a journey of understanding.

A long time diagnosing

As many of you know, it took about 18 months before I was diagnosed with multiple sclerosis. I and most of my family thought this was a long time. After living with this disease for the past three years I realized that initial 18 months is not really that long considering the type of ms, and most notably the fact that I am a woman. Whoa there, I am not being a militant feminist.

I have two other sisters with ms. For two of us it took about 18 months or so for a working diagnosis of atypical, chronic progressive ms. The other sister was diagnosed in about six months ( her MRI was lit up more than the Christmas tree at Rockefeller Center). I have spoken with many ms patients-both men and women-and by far I noticed that on the whole men were diagnosed quicker than most women.

Recently, I had a conversation with an ms specialist regarding the length of time it took for me to get a diagnoses.  The doc mentioned that more often it takes twice the time or longer for women to be diagnosed with ms (seems perhaps the dirty little ms secret). Yes, the doc had some ideas as to why this is the case.

First off, the symptoms of ms are usually vague. We all know them: fatigue, weakening of muscle strength, balance/coordination issues, cognitive, and memory issues (not feeling quite as sharp mentally and/or forgetting things more often). Because of the vagueness of the symptoms most docs don’t take women seriously or push the symptoms off as having to do with monthly cycles, hormonal stuff.  

Now I know there are a lot of women who have been diagnosed properly and in a reasonable amount of time. But the truth is there are a lot of women who are not. Yes, I and others have come across Dr. Headupmybutt, Dr. Moron, Dr. Iwanteasycases, and Dr. Itsallaboutmoney. Also the diagnosing criteria, McDonald Criteria, calls for very specific findings in order to put a typical ms diagnosis on a person. 

As far as I know, there is nothing typical about multiple sclerosis. All the literature I read states quite plainly that multiple sclerosis reacts differently with everyone. OK. So, we have a disease that broadly follows some norms, but even within that broad spectrum of norms nothing is typical or the same. For instance there are four types of ms (as we know it right now). These are broad categories in which docs try fit their patients. But even with in these categoreis (RRMS, SPMS, PRMS and PPMS) there are huge variations and differences. Not everyone with RRMS experiences the same symptoms, the same relapses, the same reactions to the disease modifying drugs (dmd). Not everyone with RRMS has the same amount of white spots, in the same pattern. I won’t go on, but you get the idea.

So we have a set of criteria to diagnose a widely varied disease of which there is no one definitive test and no cure. Even the effectiveness of the dmds are unknown. Let me clarify that: the dmds are known to be effective but how effective is uncertain.

I can understand why some patients who do not fit into the McDonald Criteria for diagnosing MS wait for a long time. I see the connection. What I don’t understand are medical professionals who know that there will be many people who fall outside the McDonald Criteria and yet they won’t help those people. These docs act like diagnosing MS is an exact science, with absolute tests and a certain pattern of symptoms that always develops.

I always had trouble with docs telling me they could absolutely guarantee I did not have ms. Really!??!! How can you guarantee an unknown? By the same token I am leery of any doc telling me they absolutely guarantee I HAVE ms. I mean if any test does emerge as being 100% positive for MS, then we’ll all know for sure.  Even RRMS patients need that test administered to them.  So, I guess it could be a long time before any of us are diagnosed with certainty that we have MS.