Fight with Me

Here is part of my last Tysabri presentation. I have used some of this before but most is new:

I am so excited to talk about New Year’s Resolutions! I love the word resolve, or promise or commit especially when it comes to taking care of myself. I also love the opportunity of a new year to refocus and start fresh. I truly believe that with my monthly Tysabri infusion, a strong support team, a healthy diet and great exercise plan, I can stop my MS progression. I know this is a very bold statement but I believe while we all wait for a cure, we can be the cure we are waiting for.

It is an understatement to say that MS has changed my life. My diagnosis changed my life, my treatment changed my life and my declining health changed my life. It wasn’t until I took control of my healthcare and decided to fight MS that I realized things could change for the best.

During the past two and ½ years I have made many lifestyle changes in an effort to help my body heal. I haven’t been perfect or consistent. Sometimes fear got in the way, sometimes laziness got in the way and sometimes craving ice cream got in the way. The great thing was that I knew (and know) that I decide how I treat myself, so even if I had a bad day or a bad week or even a bad month like December, I know that I can make the changes that count. I can always make the choice to change.

My number one 2009 resolution is to treat myself well…to take care of my body mind and soul. My New Year’s resolution is not to crash diet or to follow a 30 day plan or to drink something special that is supposed to cure MS but a commitment to a long term health care plan. My plan will, with input from my doctors and my own research evolve over the course of the year and probably long after that. I know for certain that my plan will include yoga every day. I know that it will include a healthy diet, low in saturated fats with lots of organic fruits and veggies. I will also commit to a cardio and strength training program that I can grow into and stick to. 8 hours of sleep a night and a healthy balance between work and family will be something I will continue to strive for. I will also continue my daily vitamin and mineral program that has seemed to work so well for me.

My downfall is typically overdoing it and doing something to such an extreme that I burn out. This year, I am going for “slow and steady wins the race” Not only will I resolve to a new plan but also a new approach.

I will continue to see my Neurologist, Gynocologist and Family practitioner for regular check ups and to be sure I AM as healthy as I feel. I will continue to meet and learn about people with MS who are making strides and continuing to be healthy. My other commitment for 2009 is to ask for help more and to realize that sometimes admitting weakness is a sign of strength. I cannot do this all by myself. I need help from my medical team and my friends and family. I also know that the healthier I get, the more often I can help them.

Getting healthy is a process that involves lots of change. I have changed my diet, changed my work schedule, changed the way I exercise, changed my neurologist and changed my MS therapy – 3 times. I have gone from injections three times a week to injections once a week to one Tysabri infusion a month.

After a month on of injections three times a week, I was so sick every day after that I could barely work. The injections made me sicker than the MS. My
2nd and current neurologist recommended switching to a weekly injection instead of three times a week. In switching to interferons only once a week, I was only sick once a week.

By April of 2007, I knew something had to change. I was showing up for work the day after my injections but not very productive. I felt horrible. After almost a year I had only one minor relapse and another course of IV steroids and my MRIs hadn’t changed – there was no progress. Disease is one of the few places where not progressing is a good thing. but I knew I could not continue on missing a day a week if there was another option. I wanted Tysabri.

At first, my family didn’t want me to try Tysabri. They were scared. They were the scared of the same thing you might be scared of, PML. I was scared of PML too, and then I learned the facts and measured the risk vs. reward or pros and cons.

I was under the impression that Tysabri was used only when all else failed and then found out that Tysabri can be your first defense against MS. I thought that I would take Tysabri when things got bad, and then I realized that by not waiting, I might not “get bad”.

I was really surprised that Tysabri was used for not only patients that were not responding to their current therapy but also for patients like me who couldn’t tolerate other MS therapies. I realize that all drugs and MS Therapies and other drugs have risks, including aspirin, but knowing that Tysabri is given at the Doctors office or a designated “Touch Center” made me feel better because I would be so closely monitored during and after the infusion.

In July 2007, one year after my diagnosis, I had my first Tysabri infusion. Today, ninteen infusions later, I feel better than I have in ten years. I still have occasional MS symptoms but my mind is clear and focused, my body is strong and I am ready to fight. My energy level is more stable and the daily tingling I used to experience in my hands and face is gone and has been since my first infusion. I wasn’t even looking for improvement, I am looking for the one medication that will slow or stop my MS progression combined with my diet, exercise and attitude.

Choosing an MS therapy is deeply personal and I am not suggesting that Tysabri or any other MS therapy is right for you. It was so important to me to make decisions based on facts and not on fear. I did a lot of research. I’ve read websites and blogs and labels and even clinical studies, it wasn’t the most entertaining reading but it was necessary for me to learn as much as possible to make my decision. Through this information, I was able to make informed decisions about my healthcare.

Getting MS is not a choice. How you deal with MS, or any other disease or problem, that is a choice. It may be easier to ignore MS. It may be easier to appear and act like nothing is going on. It may be tough to elicit support and ask for help. Change is never easy but always necessary in dealing with health issues.

Without a commitment to fight MS, it will take over. Get ready to fight for your life. Maybe you aren’t dying and don’t need to fight for your life but you do need to fight for your quality of life.

I resolve to make the commitment.
I resolve to fight.

Please fight with me.


3 responses to “Fight with Me

  1. Denver Refashionista

    Good for you. I am always for yoga. I can’t say I have changed my lifestyle or diet a ton but I have really cut back on my activities. I have also been learning to ask for help. It helps 🙂

  2. I’ve got the gloves on, you know! SILLY Me

  3. That was very inspiring to read. I’m on infusion 39 and can echo your feelings, but it’s great to hear about your story of taking control of your life and resolving to fight. Thank you!
    ~ Greg

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