Tag Archives: Tysabri

In a nutshell

If you have ever cracked open a perfect walnut, you will understand why I love the phrase, “in a nutshell”. Everything is right where it should be, simple, a perfect fit.

So here it is, theRIDEproject in a nutshell….

A. I am going to donate $1,000,000 to the the Myelin Repair Foundation through photography sales of limited edition prints focusing on things that move. MS stops people from moving. TheRIDEproject stops MS.

B. therideproject.com will be live the beginning of September and will include: my blog (reinvented), more resources for you, information on the ride project bike team, how to join or start your own team and raise money for the MS Society.

C. I will be sharing new, really cool cycling images to start, with more images coming from the surfing, skiing, maybe even horseback riding world. Yes, you can buy these images or tell your cycling enthusiast friends about them.

D. You will be able to track how much money I dontate to the Myelin Repair Foundation and learn more about the organization and their research model and updates at the ride project website.

Questions you might have:

Why are you “reinventing” your blog? For almost three years I have written to you about ME, about MY diet, about MY MS, about MY relapses, MY struggles, MY successes.  Blogging has been invaluable to my MS journey and will continue to be an intergral part of my constant search for balance and wellness. I am so grateful that you have indulged me and connected with me. Thank you for picking me up when I was down, for challenging my ideas and supporting my crazy ways! Now, I want to give YOU things that you can take away and use in YOUR journey. I want to offer helpful information for MS patients and anyone that wants to live a healthier life. You don’t need an MS diagnosis or another disease to know that you are not healthy.

How will the ride project help to find a cure? By supporting an organization that takes a new approach to finding a cure. “The Myelin Repair Foundation is the only research organization that addresses every phase in the drug discovery process, from initial research all the way to licensing by commercial drug developers. This is the only way to ensure that promising research results in real patient treatments – in the shortest amount of time. We combine this holistic approach with our renowned scientific team and collaborative research model.” Read more at the Myelin Repair Foundation.

Tysabri works so well for you, do you really need “a cure”? Yes, I NEED a cure, You NEED a cure, and generations to come NEED a cure. When I was first diagnosed, I remember hearing, over and over again, “You are so lucky, 15 years ago, there wasn’t even treatment for MS”. I do feel lucky and so grateful that there are options to treat MS, and I thought that was enough but I want more. We deserve more!

What can I do to help make theRIDEproject a success? There are so many ways that you can help, but most immediately I need your input. Please, tell me what you think. Ask questions. Send great ideas. Challenge me. And, most importantly, be the cure you are waiting for.

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Life is good

My home office is in place and my diet is completely clean. Life is good. I am optimistic about my infusion next week (June 2nd) because not only is my stress to a minimum but I have been sugar and flour free for more than ten days now and feel really good. I am eating fish, fruit, veggies and eggs. I will be adding bread and sweets back but in MODERATION. While I have rarely practiced this theory, I really believe that the first few (Two or three) bites of anything are the best. Can I have two or three tortilla chips or two or three bites of cheesecake or ice cream? I hate to exclude those yummy things forever but without moderation, they really don’t work for me.

We also planted our garden this week so I am looking forward to a summer full of fresh tomatoes, peppers (sweet and hot), basil and other yummy herbs.

While I don’t always follow my own advice, I still believe that food is the #1 factor in health or illness. What foods make you feel good? or bad? Have you noticed that what you eat, or don’t eat affects your MS?

Tysabri is MY miracle drug

I am pleased to announce that:

A. I tested negative for antibodies
B. Wednesday, I had my 23rd Tysabri infusion
C. I have yet to have any reaction except for mild mild mild stuff

Hearing about my test results was a dream but I knew I still had to convince my neuro to infuse. After discussing the options (no good ones), the positive effects of Tysabri in my experience and the fact that I was willing to put up with a week or two of my reaction symptoms, he agreed to move forward. He suggested a small dose of Solumedrol and I suggested NO dose of Solumedrol but agreed to consider it if I had a bad reaction.

I feel positive that my infusions will become easier and easier to handle.

So what changed?
For the past six months, my job has been tough, especially so in the past three months. That of course leads to stress, which leads to fatigue which leads to eating poorly which leads to not enough energy to exercise which leads to stress and so on and so on.

Somewhere in my mind, I must have been thinking that I could endure the stress and things that followed because Tysabri would protect me. My body on the other hand is fighting back and saying, “If you want me to handle this very powerful drug, you have to fight too”.

Now, Y’all know I am a fighter and that I know better than to work too much and to eat ice cream but I was so wrapped up in the craziness of things that I got lost. Even now, that I recognize it, I know I am still a little lost but coming out of it.

The best part is that today, I feel more like myself than I have in many months.

More to come on the diet changes I made before this last infusion and my favorite green juice recipe!

Is Tysabri MY miracle drug?

All MS drugs come with side effects and reactions. While the side effect of Tysabri that seems to have the most attention is PML, it is more likely that you may experience something that is less severe or nothing at all. If you read this blog regularly, you know that I often think of and talk about Tysabri as my miracle drug. Tysabri rescued me from a year of interferon hell and offered me hope for fewer relapses and to slow my MS progression.

Do I still think Tysabri is a miracle drug? YES

Do I still know if Tysabri is MY miracle drug? NO

I have had 22 infusions and from infusion #2 I have experienced infusion reactions. 2-4 were pretty severe and then, things got much better. Number 20-22 have been tough. I didn’t blog about it as I have been going through it over the past several months for a few reasons that I will get to later. My typical reaction includes not only fatigue (which could be from the Benedryl) but also chest pressure and pain that creeps up into the sides of my neck. You know when you drink a frozen drink to fast and get “Brain Freeze”? It usually feels like that, but in my chest, not my head. This reaction typically lasts one or two days at the most but recently it has lasted as long as three weeks.

Even with this reaction, I would choose Tysabri over Interferons. Unfortunately, I may not have that choice. After my last infusion, even with pre-treatment of several drugs, I still had the reaction. My neurologist insisted on an antibody test. I am generally opposed to an antibody test and refused the month before but this time it was test, or no infusion.

Tomorrow, I will get the results I am positive or negative. If I am positive, then I have reached the end of my Tysabri journey. If I am negative, I may have an opportunity to convince my neurologist to give it another try.

I didn’t blog about this because I needed time to experience it, address it and think it through it before sharing. I don’t have the answers yet. Without Tysabri, the first thing I will look at are lifestyle changes. The second will be other drug options.

Will post more tomorrow…

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.

I’m Back

I’m back to blogging, back to yoga, back to basics and back from Mexico.

We spent Christmas and New Years in Mexico and had a blast. I brought my new Yoga Mat with me and practiced a bit on the beach. We got up early almost every day and went to bed early. Our days were all about swimming, eating, reading and resting. We did travel to our new favorite place – Sayulita on two days and really enjoyed eating fresh shrimp on the beach, watching all the surfers and walking around town.

While I have been taking care of myself, I haven’t been as committed as usual for the past couple of months but a change is in the air. Sometimes you have to stop thinking about diet and exercise to have the energy to re-commit. I am so ready. I went to a yoga class this weekend. While I have a great yoga room at home and a nice personal practice, I was in need of instruction and inspiration. I hope to attend a few classes each week and get back in the gym. I love to watch Biggest Loser and as motivation to get to the gym, I downloaded the new Biggest Loser to my ipod and have promised myself that I can only watch it in the gym!

In an effort to get back to basics with my diet, I have cut most caffine except for green tea and an occasional Soy Cappuccino. I was on a daily Starbucks kick for a while and that has come to an end. I was also back on a few cokes a week through the holidays but that is over too. I am still not eating meat and am focusing on fresh fruit and veggies this week.

I recently participated in a Tysabri Teleconference and the topic was “New Year’s Resolutions, how MS patients are staying healthy in 2009.” Putting the presentation together really helped me put a good plan together. I will post that later this week.

To everyone that sent Christmas Cards and haven’t received one from me, they are not lost in the mail! That was one holiday tradition that did not happen this year, but stay tuned. I am thinking about a Valentines Day Card or Think Spring Card!! I really did appreciate hearing from so many of you and hope you know that I am thinking about you.

PS…I just had Tysabri infusion #19 and all is well.

Happy New Year!

The Way I Pray

I mentioned in my last post that the past few months have been “up and down”. This was clearly explained in my neuro visit today. I have a tiny area of active MS showing up in the MRI of my brain. Tiny enough that, with my neurologist, I decided not to do a steriod treatment. I know that this is manageable without drug treatment. The great news is that my spinal cord lesion is stable and shows no changes from my last series of MRIs. Also, my actual neuro exam was great. So what do I need to do to stay well?

1. Stay on Tysabri – it is working for me.
2. Cut Dairy again and really dial in my diet.
3. Simplify things at work. Work smarter not harder.
4. Find my yoga.

My yoga practice has been so inconsistent lately and I need it, in some form, every day. It was an integral part of my healing and coping process when I was first diagnosed but I let it slip away a bit. I started working out striving for more cardio and strength training but needed to keep yoga as my first line of defense. I didn’t fully understand why until last week.

I woke up early one morning and went to the yoga room. I started to learn a new routine from an exercise book that I bought. After lighting candles and stepping onto the mat, I immediately went back to a very basic yoga practice that I was taught during some private lessons the first year of my diagnosis. I did what felt right. I did what my body asked me to do. I did what my mind asked me to do. My yoga practice may strengthen my body and my mind but more importantly it helps me start a conversation with God. I don’t do yoga for the exercise.

I realized during that morning practice that yoga is the way I pray.