I’m Bbbbaaaaccckkkk!!!

Well, I’ve taken a bit of a hiatus for personal reasons.  I’m back though and would like to thank everyone who visited this blog while I was away.  And a special shout out to everyone who has commented during this time as well.

I am glad to report that I am still feeling very healthy.  The cytoxan and subsequent follow-up on cellcept has been successful, as has been the Baclofen Pump.  I am more mobile than I have been in years.  It feels good.  There were some minor bumps along the way though, just like real life.

I have switched from cellcept to myfortic.  I had some stomach issues with cellcept which I guess can happen.  I am told by docs that most people tolerate the med okay. I didn’t.  No big problems.  While on cellcept I had a constant feeling of nausea and then some suspected bleeding.  A quick endoscope and a change to myfortic fixed that minor issue.

Myfortic is the same med as cellcept only with a time release coating that prevents stomach problems.  That is the best way to describe it, I think.  Also the dosage is a bit different.  You need less to obtain the same effect.  So why would docs prescribe cellcept instead of myfortic?  Good question.  I had the same one myself.  I bet you can guess the answer.  Go ahead, guess.     The answer is insurance.  Myfortic is more expensive than cellcept and considering that “most people tolerate” cellcept well there is no point to cover myfortic before trying cellcept.  Or so goes the politically correct response from most prescription coverage plans.

Oh, don’t get me wrong, I am not bashing the insurance companies.  I am hoping they are my friends in light of the new healthcare initiative pushed my the present governmental regime.  That is all I am going to say regarding politics. We all have our own thoughts and ideas and feelings in the matter.

The other issue for me, I guess it is an issue.  I haven’t really made up my mind yet.  But since I got the baclofen pump, I haven’t had a refill appointment in which the pump wasn’t increased.  Everytime  I go for a refill I need to increase the dose. I am stiffening and sore.  So what’s the problem with that? I’m mobile, I’m not in severe pain, I’ve been able to keep active.  Sounds like a dream come true.  And it IS a DREAM COME TRUE!

I just have this nagging feeling that as good as I am right now, some symptoms are never going to go away, even for a moment.  Spasticity is apparently here to stay. I’ve made friends with it and am so thankful for the baclofen pump and the docs who knew when to offer it to me.

Since the implantation of the pump I have learned that some MS patients are found in nursing homes wrapped like pretzels from the effects of spasticity.  These patients didn’t have docs that knew about the pump or cared enough to find out.  I heard about one woman, in her late thirties with children, who was left in a nursing home to curl up.  After the pump implantation she was able to go home, in a wheelchair (at least she was sitting up and uncurled), feed herself and be a part of her family.  WOW! That is a success story!

When I hear stories like that, it puts my life in perspective.  I am thankful for the technology available today, thankful for my doctors, thankful for my family’s support and happy to only have my current issues.  Sometimes the devil you do know is better than the devil you don’t. AND it is always important to research, reach out and empower yourself with knowledge.

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.