Thursday, April 26, 2012

Things you didnt do





This is one of the reasons behind my choice to change my medication to the once a week Avonex.  I didn't want to be that person 20 years from now filled with disappointment and  regret by the things I didn't do.  I want to EXPLORE, DREAM, DISCOVER...LIVE.  

Now that things are moving forward and I am close to switching to the weekly injections I find I have no uncertainty about my decision.  This is the right decision for me.  I will never know where I would have been in 20 years if I chose to stay on Betaseron, but I am going to make sure I make these 20 years matter. 

Thursday, April 19, 2012

Afterwards

There are moments in your life that make you and sets the course of who you’re going to be. 
Sometimes they’re little, subtle moments. 
 Sometimes, they’re big moments you never saw coming. 
No one asks for their life to change, but it does.  
It’s what you do afterwards that counts. That’s when you find out who you are. 


I've made the decision to switch my disease modifying therapy from Betaseron to Avonex.
I had to let go of the notion that I would know how each of my options would play out. Once I got past that I was able to commit to a choice. My life will change, but it will change regardless of what I choose.
Its the afterwards I am going to focus on.
Here goes...


Thursday, April 12, 2012

Flipping a coin

I am faced with an enormous decision. I have been given some information from my neurologist regarding the disease modifying drugs I take for my MS.
Betaseron while it seems to have worked for the last year at preventing an attack, it has also given me the flu like side effects every other day for the past year. I feel I have endured abouther and given up too much of my life with these side effects. Never would I have imagined the drugs meant to prevent the decline in my quality of life would cause such a decline in my quality of life.
The doctor has given me some choices. These different medications had a slew of pros and cons, all that need to be carefully considered. The one option, Copaxone, comes with a hefty monthly price tag and it isn't 100% covered. It also involves daily injections. The pros of this drug is that it doesn't have the flu like side effects.
The other option is Avonex. Avonex is once a week and given into the muscle. The thought of injected a premixed needle once a week was very promising to me. That means the flu like symptoms would still be there but only once every 7 days. Imagine 6 good days in a row? Oh how my life would change.
That being said the studies have shown the lower dose and frequency of the DMDs (disease modifying medication) are not as good at preventing relapses and slowing down the progression of the disease as the more frequent drugs like Rebif and Betaseron.

I gave myself a week to make my decision.
I could choose the weekly injection that would improve my quality of life now. By choosing this I could be taking a risk at my future.

I want someone to tell me where I would be 5 or 10 years from now on the current DMD and then in comparison where I would be if I changed to the weekly DMD.
No one can give me that answer. I ask the doctors, nurses, friends, family and it ultimately comes down to me making the choice. I can get feedback and opinions from everyone, but it is my life and my choice to make.

So, do I just flip a coin? Heads or tails???