October 25, 2008

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

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 Effects

October 22, 2008

A recent commenter asked about the effective of cytoxan for myself because of his impending dance with the drug (poison).  I say poison because that is what my docs, and chemo nurses called it. Cytoxan worked for me. They could call it whatever they wanted I am grateful to have the option and to have completed my course of cytoxan.

When my docs presented me with the option of cytoxan-a year long course followed up by Cellcept also an immunosuppressant that works on the T cells-I was ready to jump at the chance. Having twenty-five years of experience they told me to take a few days and really weigh my options. In my head and really to the docs as well there were no options. I could take the chemo or I could be fully disabled. By fully disabled I mean in a wheelchair unable to complete daily living tasks (nice term for dressing, washing, feeding myself), unable to participate in my teenage son’s life. Doing nothing was no option, it was more of a life sentence. 

See, that is how bad my atypical ppms became. It made poison, cytoxan, attractive. Sometimes I hear or read about patients (ms patients) who complain about how a med makes them feel. That they want to stop it, take a break from it. My theory is that if you are able to complain about a med, then you aren’t at a point in the disease to warrant that med.

Don’t get me wrong, I didn’t eagerly awake on those infusion mornings excited to go and fill my body with cytoxan. But I was grateful to have a medicine that worked. Yes, it is the toughest treatment course I have ever been through. After each infusion I spent five days or so feeling terrible. Worse than any sickness I’ve ever felt. Then slowly I began to recover from the cytoxan. Sometimes I would lose five or six pounds in those five days because I was so sick. But it didn’t last. I would begin to feel better, get my strength back, get my stomach back- about two weeks later. Then feel the improvement that cytoxan brought about for another two weeks before the next infusion.  This roller coaster ride lasted ten months. 

The first month I notice a big improvement. I had a bounce to my step. The next two months I didn’t notice any big improvement except a plateau. For two years prior I continually slipped downward so a plateau WAS an improvement.  That is how my experience went. A big improvement followed by a few months plateau followed by an improvement and plateau. 

My course of treatment was originally for a year, but at about nine months it was evident that the spasticity my trunk and legs experienced needed more than cytoxan. So I was scheduled for implantation of a baclofen pump. And I went through one more, my tenth, treatment.

Ok you say, if cytoxan helped why did you need the baclofen pump.  Well, initially I was on 110mg of oral baclofen for spasticity, using two forearm crutches, and two AFOs with minimal success. The cytoxan gave me the strength I needed to go through the surgery and then to enjoy the pump afterwards.

What did improve with the cytoxan? My strength, endurance, coordination, fatigue, balance and most importantly I have sustained these improvements. It has given me my quality of life back. Well, cytoxan has given my family their wife, their mom, their quality of life back.  

By the end of the treatment, just driving into the parking garage made me feel sick. Before I began the treatments I ha a vision of what I wanted to happen. I wanted to be able to keep up with my family, go places, do things. I love the outdoors. We would hike before ms struck. So I kept the vision of me and my family hiking together while I was in the infusion center, while I was getting sick after the treatment,during the two good weeks a month. I kept that vision until after the baclofen pump was implanted. I kept that vision until we did hike. 

I was able to stay focused, tolerate the treatments, and have a positive attitude because of my family. Hubby stayed by my side during those treatments. Hubby and son took care of me during the recovery. Family and friends called and visited often. I have said it before, they carried me on their backs when I was unable to move on my own. WIthout that vision, without hubby and son, without family and friends I would not be where I am today. Also of course, kudos goes to my docs.

During a recent checkup, one doc mentioned that I should have been in a wheelchair, but I was too stubborn to ask for one. That maybe true, but it is that stubbornness which helps me fight this disease. 

How am I doing now? I have written about this in recent posts, but I’ll go a bit further now. Since the cytoxan and pump we (my family and I) have go away several different weekends this fall. One was a relaxing weekend at an all inclusive resort. Not taxing at all on any of us and yet before the cytoxan and pump I would not have been able to even go there. The other weekend was full of sight-seeing. A whirlwind of sorts. I was able to keep up with my family and we all enjoyed ourselves.

I am sure there are people who have had terrible responses to cytoxan, but I didn’t. I jumped at a chance to slow down this disease, to gain improvement. With atypical ms, you don’t have a lot of options, aspirins aren’t a choice.