I am currently sitting in the infusion center as the needle in my arm slowly dispenses Rituxan. I relish this day; looking forward to it like a child anticipating her birthday. After all, its a gift that keeps giving for six months. So, I guess the child would be looking forward to her half-birthday.

Today is the second dose of the cycle. I faired okay after the first. Mainly, I felt tired and fluish for about a 7-10 days. It’s a small price to pay for stability and consistancy in a disease whose M.O. is instability and inconsistancy. It’s also a MUCH preferred medication to Cytoxan-for me. Two doses to a cycle, one cycle every six months.

Knowing that each disease modifying drug (dmd) change means one less option, I hope to get many years out of Rituxan. Each dmd also means a risk-will the new one be as effective as the last?, what are the new side-effects? how long will this one last? All good questions. All questions of which, given my druthers, I would rather not have to know the answers. But, some I know the answers to and others no one knows the answers.

For me, focusing on the present moment is the only way do deal with atypical chronic multiple sclerosis. Thats not to say I don’t plan for my future-I do. I try to focus on the now so as to enjoy my life, my family, my friends. When living with atypical chronic multiple sclerosis it is imperative to focus on the present moment-it’s all I got.

The biggest risk inherent with Rituxan, from my perspective, is the possibility of PML (Progressive multifocal leukoencephalopathy.) Yes…the same PML associated with Tysabri. A few things to consider with Rituxan:

  • Are you JC virus positive? If so, it leaves the door open for the possibility of PML.
  • If JC positive-it becomes somewhat murky-not muddy-just murky. Essentially, the question is: it worth the slim risk of PML for a comfortable quality of life for an uncertain amount of time?
  • What are the other options? When I asked my doc this question there was a pause followed by two meds neither of which were very good options and I subsequently erased them from my memory.

I was told that so far, no patient taking Rituxan for MS have been diagnosed with PML. So, thats good news. My doc has been using it for 5-6 years-a good amount of time for me to feel
comfortable with it.

Yes…wonderful…but, does it work? So far so good. I am completing my second cycle. Quite frankly, I couldn’t wait for me veins to soak up the med. I was beginning to feel a small
slide backwards. Apparantly, it can take several cycles before your body has the necessary maintenance levels of Rituxan. I will see in six months I guess.

Well, the nurses have disconnected me and I will head home to reap the rewards of my day.


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.

A long time diagnosing

October 24, 2008

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.

Cytoxan prep

September 25, 2008

In June 2007 was my first chemo treatment. You can read about that experience in my Cytoxan post. I just wanted to note a few things about how I prepped for the idea of cytoxan and continued to prepare each month.

First, anytime you hear the word chemo, you know you are in for a bumpy ride. Nausea, weakness, hair loss, poison. Yep, thats right, poison. More times than I care to even remember, people in the past year have referred to cytoxan as poison. I know it is poison, but I didn’t really want to hear that word while have it was pouring into my body.  Its kinda like having the sad eyes of a cow looking through the restaurant window at you while you’re eating prime rib. You know what it is, but your mind rationalizes it, making it acceptable to eat cow.

That is what I needed to do. Understanding some of the possible side effects was pretty easy. I knew others who have gone through chemo, seen it before. I needed to wrap my mind around it. Also, and this is a biggie, I was not dying, I do not have a deadly disease. This works for and against chemo for ms.

Firstly, because I have ms I got a smaller dose than a cancer patient does. Great, hooray, less poison! Yet, when you are in the throes of being sick from cytoxan, your heart says, “hey is this worth it, I mean we’re not dying here.”  My brain responded with “oh yes, it is so worth it to feel better, and have a huge quality of life boost. Think of your son and hubby.”  If steroids made me feel better for a very short period of time, than why not try something that could make you feel better for a much longer period of time.

So, now it was a choice I was willing to make. Yes, I could be very sick for a few weeks every month for a year, but have a big payoff in the end. Isn’t that what we teach our kids. Work hard now and you’ll see a payoff in the end. Nothing just comes your way, you must work for it. And really isn’t that the joy of life-the journey. I mean we all, WE ALL, sacrifice and suffer in hopes of a payout.  You can insert anything in place of cytoxan and get the same result. Being a woman, I went through nine months of pregnancy then labor and delivery to have a child. Was the sacrifice worth it? ABSOLUTELY!

Keeping a positive outlook was also important for me. My hubby and I spoke those few days before my first dose. He told me not think of the cytoxan as poison, but as good medicine like it is. I did that. We also had a vision going in each treatment and throughout the year of us hiking a mountain. Actually, no, the mountain was not a metaphor of trying to get through the year, but I guess in retrospect that works too. It was what I loved to do. My son and I and sometimes hubby would hike up some of the local mountains. I love the outdoors, love hiking.

So this is what got me through the the year. Or rather a few months shy of a year as I also needed the baclofen pump. I learned to accept where I am. By that I mean I stopped thinking that I shouldn’t be doing this, I shouldn’t have ms, this wasn’t in my plans, etc. Instead, I thought okay, I’m here doing cytoxan right now, that is it. When I began thinking like that, I realized life is pretty good. Seems wierd, but it is the ‘thinking too much about it’ that creates problems. We ourselves put labels or beliefs or conditions on things that make us look at our situation as good or bad. Really it is just where we find ourselves at that moment, nothing more.

Filling in the blanks

September 25, 2008

Okay, so I thought I would go back to the last part 2006. Finally diagnosed in fall of 2006, and set for my first steroid (solu-medrol) in Ocotber 2006. That was a learning lesson. But how long would the effects of steroids last? I was hoping forever. 

Of course, we know that doesn’t happen. However, the docs, as usual, give you the pat answer, ‘Well everyone reacts differently’. Yes, but isn’t there some kind average, a typical time frame, something. No, not really or at least not that they were willing to utter. I guess that is for the best because sometimes if you give a person parameters (read boudaries) then that person conforms to that boundary. The proverbial self-fulfilling prophecy.

I really have learned to live each moment. In a part due to these wonderful docs of mine and in part due to slowing down in general. Learning to accept change (covered that yesterday, so I’ll stop there). Back to the story…

By the end of december of 2006 I began to slide downwards. Well, more like flying downhill on an icy slope with the new sled you just got on Christmas. So in Jan. 2007 (Hooray-its 2007) I saw docs who really pinned down exactly when I felt the slide. Which was about 8 weeks or so after the ‘roids. 

Another course of solu-medrol was ordered and administered in February 2007. Now by this time I had already seen a neuro-physiatrist to assess my walking and aid in whatever way possible. By Thanksgiving 2006 I had two AFOs (ankle-foot orthotics). Or as I lovingly refer to them as my legs. The physiatrist also gave me my beloved lofstrand crutches. Love really has nothing to do with it. I did notice a difference when using the braces and crutches. I certainly was not blazing any trails, but I was able to move around better, last a little longer. But, really it was the jolt of steroids that I had come to enjoy.

Solu-medrol (each time I had the steroids it was a five day course) really gave me a boost. I felt better, not great, but better. The only problem was that it didn’t last. Oh yeah, one other problem was that I took nose dives each time the stuff wore off. I mean it was like in a movie when the elevator is out of control and careening to the basement.

So by April 2007 with the steroids worn off, I was in pretty bad shape looking for another fix. Really, I felt like that. I wanted to feel good again; and couldn’t wait to see my docs so they would give me another course of Solu-medrol. 

My docs had a different idea, which they had alluded to the previous few visits. The idea was cytoxan-chemo. A year long treatment of monthly doses. As I previously shared, other family members have multiple sclerosis, have chronic or atypical progressive ms. So hearing ‘cytoxan’ was not completely new to me, to us (hubby with me every step of the way).

We sat and listened to their plan. Asked many questions. Finally, I asked “If this was your wife…”. Before I could finish the question, the doc said, “Yes, my wife, my mother, my sister, my daughter, my son, myself. This is the course of treatment I would insist they use.” WOW! He was straight forward and unwavering.

Now, I have to say that I have heard people with ms say before, “Seems the treatment is worse than the disease.”  I have never experienced that. I think that if this is your experience than perhaps you are not as bad off as you think. 

Even before we left the docs office that day we (hubby and I without even speaking) were eager to scream “YES! We’ll take the cytoxan”.  But being the docs they are, they did not want an answer then. They gave us info to take home and read over the weekend. I could not wait for monday to call them and get started.  

Why so excited about chemo?  Well because the treatment was not worse than the disease. Within two years of onset I was unabe to do much of anything besides sit on my couch. I have stairs to climb to get to my second floor bedroom. Without help from hubby and son I wouldn’t have made it at night. Hubby and I were getting ready to change our first floor living room into our bedroom. The only problem was my first floor didn’t have a full bathroom. I still needed to climb stairs to take a shower. 

We jumped at the chance to slow, halt, reverse some of this progression. I mean I should have been in a wheelchair, I was too stubborn. I’m too young for that, I thought. So we set out on a year long journey. This was a huge commitment by my whole family, but we stuck together.


September 23, 2008

While waiting at my recent neurologist appointment, a discussion in the waiting room occurred. Several of the people began asking others when their life changed.   Seemed a little odd to me because I don’t know the date when I was diagnosed which is what was meant by ‘life changed’.  It seems that the word ‘change’ has a negative connotation to it. Yes, being diagnosed with MS is not a positive thing. I am painfully aware of that. Wrapping your head around such a significant change can be difficult. There are so many questions and so few answers. Anything that is worthwhile  usually requires hard work to accomplish.  Putting yourself in the best possible position when you have ms does require a great deal of hard work. 

But the whole idea of change is different or I guess has changed for me since being diagnosed with multiple sclerosis. Living in the northeast I watch the seasons pass every year. Seems nature is in a constant state of flux or change. The tress sprout leaves in the spring unfurling their deep greens only to wave about through the summer breeze like flags. By the end of summer their life lived and like a checkered flag in an auto race they wave once last time before turning autumnal colors of red, orange, yellow as the life drains the color from their limbs. Finally falling upon the ground only to turn into fertilized earth giving the trees sustenance once the snows of winter melts.

Nature is constantly changing. I don’t see the trees, or the squirrels, or the bears, or the foxes (you get my drift here) fighting that change. Since being diagnosed with multiple sclerosis I believe that it was my expectation that things should not change that caused my unhappiness, my anger. It is like a chinese finger trap, the more you pull at it the tighter it becomes. If you relax and push inward your fingers are freed. 

Now, hold on a moment. Don’t turn away so quickly or yell so loudly. I am not saying if you just accept ms then all your worries will be gone, or just be happy you have ms. No, no, no, no that is not what I am saying. 

What I am saying though is once I stopped thinking, saying, and believing that ms should not have happened to me. Once I stopped believing that I am a victim of this disease, I became happier, became better able to handle fighting the effects of multiple sclerosis. On my to the grocery store, I bypass a house with a huge field as a back yard. Often I see a three legged dog running around the field. Occasionally, in the afternoons when I drive by this house I see a young girl (6 or 7) playing fetch with that dog. The dog seems pretty happy despite having lost a leg. The dog works harder to run and fetch than any four legged dog I have ever seen.

See, once I said, okay I have ms that is just my reality, I was able to next say okay what do I need to do so that I can be the best for my family. Now, if you have read any part of this blog you will see it took time to be diagnosed and I was pretty down about that. It is not as if I am happy to have ms or happy to hear or see anyone else with this ms. For me, when I stopped expecting my life would be different than it is right now, at this moment, I instantly became happier. I was not so angry, I was not so scared, I was not so tired. 

Of course, that change may bring harder work but at least I am able to work at it. Having ms has taught me so many lessons. Accepting that change happens at every moment, and not fighting against it has helped me greatly. I can put my energy into really battling the symptoms of ms and not battling my mind obsessing about how life should be. I have energy to enjoy the moments with my family.

I am a person who happens to have multiple sclerosis, primary progressive, atypical multiple sclerosis. I have fought my way through dark times to get back to a place where I can be happy. Change is just part of life. Hooray Change!

All in the Family

September 11, 2008

Sometimes life throws you bittersweet moments. I was privy to one these the other day. Returning home from walking my dog, I told my son I was almost able to maintain the “pirate pace” during my walk. The pirate pace is briskly walking for over 30 minutes OR walking our chocolate lab at a pace and length of time enough to thoroughly tire him out.

My son hugged me, told me how proud he was of me. Wait for it-that was not the moment. Here it is. He then said, “Mom, if I get MS I know I’ll be alright. I mean look at you. With everything the past three years has thrown at you and you are as happy as ever and continue to do new (learn to knit, begin writing) things.”

The sweet part is that I am truly humbled by his words. As a parent it is deeply satisfying and humbling to know that I have actually provided a positive model in such a turbulent time. Many adults do not feel as though they are or would be alright during trying times. 

By now, you can guess the bitter part-“Mom if I get MS”.  Yes, yes I know that MS is not hereditary and that genetics play only a small if any role in MS. I am keenly aware of the percentages as well. However, part of the Atypical MS diagnosis for me is my family. Myself, my two sisters, one of three brothers and a niece all have been diagnosed with MS. One sister is ‘classically’ RRMS as her doc puts it. That leaves myself, one sister, one brother and one niece that are Atypical.

So, when my son said “If I get MS” he really means it. He has watched different members of my family become affected by MS for the past five years. At first it was his aunts, then his mom, then an uncle. When his cousin, who is only a few years older than he, was diagnosed with MS,  it became a possibility for him, too. 

Until he uttered those words-If I get MS-I was hoping he didn’t connect the dots. But as a bright teenager he did. He always loved the connect the dots and most other puzzles as well. Don’t get me wrong, we aren’t waiting vigil for the arrival of symptoms. In our mind it is a big IF and down the road in the distant future. We don’t fret about what ifs. We live our life as if we are free of all disease. We know what can happen for both he and I;  that makes each moment all the more precious to savour.