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    You are here : Home » Get Involved » MSRC Interactive » Tysabri® User Diaries » Sue Lawrence's Tysabri Diary

    Sue Lawrence's Tysabri Diary

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    Sue Lawrence

    Sue: Age 33

    Diagnosed:
    1994

    First Symptoms:
    1990

    Previous Medications:
    Betaseron: On for 2 ½ years. Flu-like symptoms became too severe.
    Avonex: On for little over a year. Flu-like symptoms became too severe to even work.
    Copaxone: On for a year. Bruises quit healing, found I out I had a blood disorder.

    MS History:
    Had first symptoms in high school as a cheerleader, affected my left hand and left side of face had no movement. That progressed to larger areas all over body and lasted for about 6 months. Four years later, I started to lose feeling and strength in my feet. It progressed until the lack of feeling reached my ribs. That is when I was properly diagnosed. It lasted another 6 months. The next episode was in 3 years, then 2 years, then 1 year. Then, I had it and it never went away. But I will still considered relapsing-remitting because the severity of my symptoms changed.

    Main Symptoms:
    Spasticity in legs and back, extreme fatigue, balance, weakness, gait problems, cognition issues, temperature control.



    Sue has agreed to email correspondence with anyone interested in Tysabri. She can be contacted on [email protected]

    5 Year Anniversay

    Hello to all-

    This entry comes with the wonderful news- that I have now celebrated 5 years on Tysabri!

    On one hand, I can't believe that it has been 5 year! How has that much time gone by??? On the other hand, I could write a book on the life I have lived while on Tysabri. The majority of people in my life have never seen me "down". What a wonderful thing. I could not say enough good things about finally finding a drug that works so well for me.

    I wish everyone the opportunity to live life to its fullest and to never give up hope. They are still working on a cure.

    A silly side note: I now have 2 cousins diagnosed with MS and one with Crohn's disease???

    Sincerely,

    Sue Lawrence

    Those who dance are considered insane, by those who cannot hear the music.

    Update 12th December 2011

    This entry brings to you well wishes and good tidings.

    In April, I will be celebrating 5 years on Tysabri. I can't believe it has been this long. When I look at all the things I have done with the help of Tysabri, it feels more like 10 years. My life is so different now. Not just physically, which is tremendously different than life without Tysabri, but a large part of my good health is due to how I feel mentally.

    I would imagine that anyone that has been given a second chance at life goes through this mind change, but I would feel like I am only telling you part of the story if I did not mention this. There are so many things that occur during any given day that are requirements: laundry, cleaning, dishes, cooking, driving, kids, spouses, jobs, etc. Part of maturing is that we meet these responsibilities. So, when you are given a diagnosis that is going to impact your life greatly, you are overwhelmed by the thought of meeting life's requirements. This diagnosis knocks us down, kicks us around, and leaves us wounded lying on the floor. Getting up is not easy. Finding a therapy that will lend a helping hand is our goal. When you find something that works, such as I found Tysabri, we are left with re-learning things we learned as infants. What we don't have to deal with as infants is the mental struggle of getting back in the game.

    Even though I have lived a wonderful life on Tysabri, this challenge between "have to do's" and "could do's" is an every day struggle. But what I have come to embrace is this: LIVE! Do what you have to do on rainy days. On the sunny days- hike, bike, ride horses, walk dogs, go site-seeing: in general become a force to be reckoned with. Everyone around understands, allow YOURSELF to understand.

    When laying down in bed at night, I ask myself, "Is God proud of the life He has given me?" For so long I would respond with all of the things I didn't get to do. I had to learn to be happy to answer with what I did get to do. Every day is different and I had to accept that requirement not longer equals "job well done". A job well done now means experiencing new things and being active in life. When I look back at a certain period of time, I no longer say, "I kept the house clean." I now say, "Excuse the mess, but let me tell you about all the things I have been doing."

    Allow yourself to LIVE!

    Love to all,
    Sue Lawrence

    3-year Anniversary!

    This month marks 3 years on Tysabri! I can't believe that time has gone by so quick. That being said, it is because of the Tysabri that life is going by so fast. Before, time went by so slowly. All I could think about were all the things that I had time to do, but no longer the body.

    Please forgive me for my lack of keeping up with my diary entries and emails, I have just been too damn busy! I have to say, right now my cup overflowth. I am wearing myself out. But I must say that everything I now do, truly makes me happy. I work at a community art studio two days a week, belong to my local MS support group, am a patient advocate for Tysabri and give public presentations and speeches, belong to a writers' group, do animal foster care,  create stained glass artwork, and I volunteer with 2 local animal organizations, an elementary school, and the Montana Veteran's Home. Along with all of that, I do my best to find time for my family and pets, and occasionally spend time with friends. All of this, ALL OF THIS, is possible because of Tysabri. 

    I truly feel like a contributing member of society. I think that is something that comes hardest to most of us, when we are no longer able to work. It has been so ingrained into us that we must work, make a paycheck, and pay bills to feel like we are doing what we are "supposed" to be doing. I have found different ways of measuring my worth. What a much better world this would be if we all had that ability.

    Physically, I think I am doing remarkable. I can drive myself to the point of fatigue and weakness, but I think that I might give anybody without MS a run for their money. It is just that when I am tired, it is physically noticeable. But I never hang my head. I now limp with dignity because I have earned this limp! I know, sounds funny huh? But you have to be in my shoes to understand. As soon as I am rested up, I am back to the normal being that no one could tell has MS.

    I hope everyone lives every day to its fullest, and that what you are doing makes you happy. To wake up everyday welcoming what lies in waiting is a great feeling.

    Sincerely,
    Sue Lawrence
    Those who dance are considered insane, by those who cannot hear the music.

    Update 05/10/09
    It has been some time since I last did a diary entry, so let me catch you up. The exacerbation I had, lasted only 2 months. There was ABSOLUTELY NO progression on my MRI- yeah! I truly feel like it was the Tysabri that pulled me back out of things. Just days after my 2 month infusion, I was back to normal. I still am in awe over the remarkable recovery I have on this therapy. I can't say enough good things about it!

    On another note, I have always wondered if or how I could handle an emergency situation, having MS but on Tysabri. Could I continue to have strength and stamina to run into a burning building to save someone I loved? Could I come upon a car accident and have super-human strength to save a person before the car burst into flames? If stuck on a mountain top miles away from civilization when a sudden snow storm struck, could I keep pushing through until I reached help? Maybe I have watched too many "Heroes" episodes!!!

    These types of scenarios have stuck in the back of my mind. The biggest reason is that a few days previous to my next infusion, I start to have MS symptoms - slight, but none the less, they are there. So, I know that the MS still is just lying under the surface, but I was curious as to "how low" under the surface it was. Well, I finally had the chance to put myself to the test!

    Last week, I took 4 of our dogs for a walk down at the river. The dogs all love to investigate and one loves to swim and chase sticks. We own one side of the river and the other side is Glacier National Park. While throwing sticks in the water for Jesse (aka- water lover), my Jack Russell, Rosie (who doesn't like water), jumps in the river and swims as fast as an otter to make it to the other side. The whole time I am calling her name and she does not acknowledge me at all. As she swims, she is being swept down the river by the current and is quickly heading towards the rapids. As I stand helplessly on the shore, I watch as she reaches the other side- just before being swept down the rapids. I am so relieved that she has made it, it took a minute to sink in that she is in a dead out run into the National Park (with thousands of acres of wilderness). After weighing my options, I find that my best option for retrieving her is to jump in the river and go after her (to drive to the area she is at is about 5 miles around). As I start my way across the river, Jesse is so happy that I have finally decided to join her in the river that she joins me on my journey. The current of the river has made it difficult to cross, but is made almost impossible by the rocks under foot being covered by a thin coat of slime. Me being barefoot (as always) has made the trip that much more difficult. As Jesse and I make it to the other shore, we are greeted by a 6 foot high wall of earth that we must climb. Making it to the top, I spot Rosie zipping through the tall grass in front of us, with her nose to the ground.

    It is at this time that I hear a high pitched squealing. I turn around to see my foster dog, Ollie, half way across the river. (A few notes on Ollie- he is a pug, that was rescued from a home where he had been abandoned, and now has incredible separation anxiety every time he is not within 10 feet of me, but he also hates water, so I thought he would be fine on the other shore.) Because he is not a good swimmer, he is further down the river than Rosie was and he is now being swept over the rapids. I quickly try to figure out the best way to get him and decided I should try to run down what little shore there was until I had to jump in after him. Jesse joins me in the run and thinks I am playing and steps in front of me- I fall over her. I get up and continue running. I watch as he goes under the water several times as he is getting tired and is crying heavily. The whole time I am yelling Ollie's name so that he will continue trying to swim to me. When I think he is beyond me catching him, he finds an outcropping of sand and is able to get ashore. Moments later I get to him as he is coughing up water and gasping for air. Jesse the whole time is right at my side, wagging her tail. Now Rosie makes a mad dash past me and darts away as I grab at her. Yelling her name, I finally get her attention and she stands near me, but out of reach. I pick up Ollie and try to calm him. I look back across the river, and see my perfect, obedient dog, Maggie, sitting faithfully waiting for me on the other side. I now have 3 dogs on one side and one on the other. So, I decide I have to go back across the river a second time.

    I decided to walk up river a good ways away from the rapids. The whole time I am holding Ollie as he has wore himself out. I climb down the bank, with Ollie under arm. Jesse jumps down on her own (just happy for the adventure), and I grab Rosie as she makes another blitz past me. So, with Ollie under one arm, and Rosie under the other, I begin back across the river. This time it is 3 times more difficult because I do not have my arms to use for balance as I slip and slide on the rocks below me.

    About 2/3 of the way across, my MS appears. I have NO energy, my legs are weak below me, and I wished more than anything to sit down and rest- which was not an option! My shoulders and arms struggled to hold the dogs up as I continue. When I reached the other shore, I collapsed. Three of the dogs took off to play on the shore, while Ollie stayed beside me still gasping for air and breathing raspy.

    So, now I know how far below the surface MS lies! It is just low enough to do what needs to be done, but not so low that I thought of letting the dogs go so that we may possibly re-enact the whole thing again!!!!!!

    We went back home and after changing clothes, Ollie and I were off to the vet. It was confirmed that he had water in his lungs and was put on antibiotics to hopefully hold off any pneumonia that could come along later.

    As for me, I have multiple stone bruises on the bottom of my feet and have been down with MSish symptoms since then- tire easily, taking naps, a little weak, with walking difficulties. But, I am incredibly happy with how everything turned out. And, I finally know how my body can/will respond to an emergency. It is a comforting thing to know.......I think?!?

    Sue Lawrence

    Those who dance are considered insane, by those who cannot hear the music.

    2 year Anniversary
    This is my two year anniversary of being on Tysabri. I expected to be jubilantly expressing how wonderful life is; I have never had such a wonderful remission like I have had on Tysabri. But on  April 16th, I began my first and only exacerbation while on Tysabri.

    It was so heartbreaking to have my "MS life" back again.

    I will continue taking Tysabri as I can not image how bad things would be without it or all that I would have missed out on in the last two years. Tysabri is still as important to me as it has ever been, and I hope that it will help me progress through this attack as quickly as possible.

    For those of you reading this, I want you to realize what wonderful things I have done BECAUSE OF Tysabri. Even though I am having a tough time right at this moment, wouldn't you give something a try if it could relieve ANY part of your symptoms?

    Tysabri is only a therapy, not a cure. My MS is just reminding me that it is still here. I am not ashamed or discouraged by it, just disappointed.

    My MRI's still show no progression, so it is still working on my brain and spine. A flare-up is tolerable. Of course I hope it doesn't stay long!

    Please know that Tysabri was one of the best choices I have ever made. 
    If you are not happy with your health at this time, give Tysabri a try. You deserve the chance at a better life!

    Sincerely,
    Sue Lawrence

    Update 06/04/09

    Sue Lawrence

    OK, so this isn't a picture of me sky diving or bungee jumping....... but who cares about those things anyhow- they don't require use of your legs. But on the other hand, ice skating does!

    It has been 12 years since I have been on skates. I grew up in a family that spent a lot of winter time on the ice, and I knew how to skate. But of course as my MS progressed, it too was one of those things that I just couldn't do any more.

    Since I keep achieving the goals I set for myself, the next thing on my list was to go ice skating. Once again, dream realized! I will admit, things looked pretty grim in the beginning. I actually had a difficult time with my calf and ankle muscles spasming. I had to continually tell them to relax. I looked as if I had never been strapped into skates before a day in my life. But within a half an hour, they had loosened up. I do believe there might have actually been a bit of "grace" to my skating!?!

    My son Cody came with and we had a fabulous time. We joked and screwed around making fools of ourselves. At one point I said, "I will try to skate on one foot, I don't know if I can do it, but I gotta try." He said, "No, don't try it." My immediate thought was.... why, do you think I can't, do you think my body can't do it, do you think the MS will stop me! Ready to recoil from his response, I asked why. He said, "Then it won't be MY special move!" We both laughed.

    I can not explain how wonderful it is not to use MS as my daily excuse for why I can't do something. Although I did have some muscle spasms, tenacity ruled the day. Later that day, I did have to rest, I was definitely feeling MS fatigue. It has been so long since I felt that. But I really put my leg muscles to the test. I was alright with relaxing for the rest of the day, it was worth it. The next day, I was back to my old self again. This just wasn't a possibility before Tysabri. It really is kind of exciting now to see how far I HAVE to go before I get reminded that I have MS.

    As always, I wish everyone a day filled with the joy of achieving something you haven't in a very long time. Ten minutes of that feeling makes up for days spent crying. What more could anyone want!

    Sue

    My story so far - November, 09 2007

    Last summer was real difficult for me. Everything I did was motivated by fear. That thought was so unnatural to me. Typically, my motivator was that if I was told I couldn’t, I would prove that I could. Fear was something so foreign to me. The fear I felt that my life was soon going to be over was completely overwhelming. Whether I did the task at hand or not, I always regretted that I made my decision based upon fear. What ultimately happened was that I felt worse both physically and more so mentally for doing the things that should have normally brought me joy. My mental struggle was more agonizing that were my physical limitations.

    I had tried every drug available to MS patients. Every one gave me little positive results and what was worse was that all of them had tremendous side effects. In most cases, the side effects were worse than experiencing MS. When my doctor told me about a new drug called Tysabri and the results people were having, I was immediately interested. After speaking with my family about the risks involved, we decided to give a try. My life was heading down a path that was difficult for all of us. If something could change that, we wanted to try.

    The day of my first infusion, I checked into the hospital for my one hour IV and another hour of observation to follow. I was not a bit nervous, but rather anxious to begin experiencing life again. The infusion was straightforward and simple, with no complications. I did not even have a funny metallic taste in my mouth like I did with infused steroids. For that day and the following few days my boyfriend kept checking in with me often to see if I was feeling any side effects. There never were any.

    Only three days after the infusion, my boyfriend said he could see a difference in my energy. I felt it too, but was not going to give the drug any merit yet. I needed to see that it was more than a good day here or there. I wanted to know that this feeling was going to last.

    By the fifth day, it was absolutely noticeable that I had tons of extra energy with not enough places to use it all. On day six I began physical therapy. My hope was that if this drug was actually working for me, that getting my body back into shape was going to be essential. Even the simplest of tasks that my therapist asked me to do were very difficult. Isolating muscle groups physically showed me how deteriorated my muscles had become over the years of unsteady, wobbly movement. I walked hunched over and swayed from side to side to swing my stiff legs to where they needed to be for forward movement.

    Therapy was difficult, but it was apparent that my muscles were not going to get into shape on their own, I had to help them. Every day I exercised. Little by little, I was becoming more mobile and moved more freely. I no longer needed my daily naps either. I felt as though I was taking somebody else’s body for a test ride. I enjoyed every minute of it. It felt like I woke up in the morning with a smile on my face and it didn’t get a chance to relax until I was back to sleep again that night.

    For the first time in years I was able to do some of the typically easy (for someone else) things around the house: vacuum, do dishes, watering plants, or sweep. I began not only to be satisfied with getting my life back, but now I wanted more. I wanted the things that I never had a chance to graduate to as my peers did. I have had MS since I was 16 years old; I was just a kid back then. Now, I had the feeling that if I wanted something bad enough, I was no longer held back by my frail body, or for that matter, the frail mind that went along with it.

    I have now had seven infusions. My daily life is back at a place I thought I would never be. There are still very mild things that tell me I have MS, like difficulty skipping and galloping, but who needs those after elementary school anyhow? Also, if I stress myself out tremendously, I do have miniature relapses. By this I mean that if I heap so much stuff on myself that I just can’t see through, I spend the next day with tight legs and need to rest. It is over in a day. So, I still have MS, even on Tysabri, but my life is at a comforting, peaceful place. Limitations are no longer a thought.

    There are others I know that have these kinds of results on other therapies, but I didn’t. So, my advice to others is: don’t stop trying. There is something that will work right for everyone. Tysabri is what worked for me.


    January 28th 2008
    Today I called to my doctor's office get a prescription changed. The receptionist told me he no longer worked there, but another one of the doctors could help me out. In shock, I left my message for another doctor to return a call.
     
    After I hung up the phone, I cried like I never cried before. I was shocked by how upset I was over my doctor leaving the practice.
     
    My doctor has turned out to be one of my best friends. He always allowed ME to play an equal role in my health. Although he had the medical knowledge, I was the one that had to live my life every day. WE have made every decision about my MS together for the past 7 years. He was the one that kept me up to date with the progress of Tysabri and eventually got me started on it.
     
    I guess the way I reacted had something to do with the fact that half of the "Sue without MS" team was gone. I panicked that another doctor could not step into the very large shoes he left. A part of me felt that it was because of him that I had my life back again. If he wasn't there anymore, would my quality of life change?
     
    I eventually found out that my doctor decided to open his own general practice clinic. So, I am still able to see him as my regular doctor even though he won't be able to be my neurologist anymore. I told him about all the emotions I had been through since his resignation. He was touched by my dedication to him. I feel blessed to have a doctor that works TOGETHER with me about my health.
     
    I hope that everyone has the opportunity to find a doctor that works with them just like I do. I have heard over and over again about doctors that tell the patient what to do, when to do it, and when they think it is best to stop/start a new therapy without any input from the patient. This is your health! Play an active role! If you aren't in a partnership with your doctor, find one that will!

    February 27th, 2008

    The beginning of next month will be my "one year" marker for being on Tysabri. Because of that, I have had a lot of thoughts running through my mind. So, I thought I would share them.
     
    First off, I want to plan some sort of party. I would like to invite friends, family, doctors, nurses, fellow MSers, therapists, hospital personnel, and basically anyone that has been a part of my "MS Life". They have gotten to see me over the years through the highs and lows. Why not celebrate a wonderful time in my life?
     
    Also, I have been thinking deeply lately, maybe too deep. I have gotten to do so many things in the last year that I would never have the chance to do without Tysabri. I have lived more of my life with MS than without. So there are many things that I am literally having the first opportunity to do or even try. This is the spot where I could write a novel, listing all of the things I have done over the last year. But I will save the time and space and just say that I have found no limitations.
     
    So, here is my "too deep" thought. What if I did find limitations? What if one of my "I'll try it" moments turns out to be a disappointment? I fear that moment. The reality: most people WITHOUT MS have limitations. So why would that be so discouraging to me? Well, I don't really know the answer. I expect I will probably blame my inability on my MS. All I can say is that for the last year, everything I have set out to try, I have done. Maybe it wasn't done correctly or gracefully, but I did it, and you could tell by the grand smile on my face. I have even caught a few on camera!
     
    Another thing that I can't get off my mind. I have become obsessed with surfing. I grew up in the center of the United States. I now live next to one of the most ruggedly mountainous areas in the US. I have never been in either ocean, so this obsession is strange. But I think this is my reason. Surfing portrays everything that my MS is not. It requires quick thinking (not cognitive problems), balance (not wobbling from side to side as I swing my legs forward), swimming (haven't been able to for years) stamina (not fatigue), and strength (not years of unused muscles that are weak). Although I may now be able to surf, I am not a person of money. I go from month to month just barely making ends meet for me and my son. Traveling to the ocean to surf is very far out of reach, but there are entire days when that is all I can think about. I dream about it, and when I wake up I feel so alive. I wonder if others have that one thought that makes them feel so alive. Once again, I wonder if this is something that I want so much, will that be the one thing I fail at. How would I feel then? Is it better to be a dream that is successful than a reality that could fail???? It is probably different for all of us.

    Sue

    April 15, 2008

    Last Friday I had my “One Year of Great Health” party. I was so overwhelmed with everyone that came! There were about 25 people there, so many they had to move us to a private room! I was surprised to see so many familiar faces since my party was scheduled on the same day as the Elton John concert (which was announced after I had planned my party date)! There were people representing all parts of me: friends, a teacher and board member from the school I volunteer at, several fellow MSers, art teachers from the studio I volunteer at, one of my college professors, gallery director who displays my art, people from the vet clinic I use, my health professionals, a Biogen nurse, a friend I do animal fostering with, fellow horse riders, and my horse trainers.

    The largest surprise was that my parents, brother, and his fiancé flew in from Wisconsin as a SURPRISE! I have told them before that surprises and MS don’t go together, but they don’t listen. But, it was very nice to have their support. Of course my wonderful partner, Matt, was there too.

    All of these people were here to celebrate the achievements I have made since I have been on Tysabri. I can not think of a more positive reason to be surrounded by those you love! I wish that everyone with MS has this sort of reason for celebration. We are so often defeated by this disease, that the victories are not as well known. But, I will continue to do my part in spreading the word about Tysabri.

    Sue

    April 28, 2008
    As I have now been on Tysabri for a year, a friend of mine asked me a couple of really great questions: What can you do now that you couldn’t do a year ago, and  what are your plans for the next year?

    It took me several days to formulate answers to his questions. Once I had answers, I thought this was probably the perfect place to display those responses.

    What can you do now that you couldn’t do a year ago?

    I could take up a lot of space listing you all of the activities I can do now that I couldn’t last year. But I think the biggest thing that I can say is that there is “predictability” to my life. MS poses different problems for you different days- at least for me. There were always the certainties: spasticity, weakness, weeble-wobble walk, fatigue, pain, cognition problems. But every morning I got to find out how badly each one would affect me that day. One day could be a “well, I can get the laundry done today, maybe tomorrow I can vacuum”, while the next day would be, “somebody help me out of bed, I need to sit in the recliner”.

    Now, it is predictable that I have none of the above problems. Well, I am still working on rebuilding the muscles, but I am no longer restricted because of MS. I do occasionally have small symptoms: a small amount of fatigue that could require a nap or difficulties with cognition. But, they are completely predictable- way too much stress or way over-exerting myself. If I do have to deal with them, it is a day or two at the most. Very often these will affect me more when it is close to the time for my next infusion. Then, it is right back to being a “normal person”.

    What are your plans for the next year?

    My answer for this is probably a little obvious, stay on Tysabri!!!!! Beyond that, I want to work on getting better muscle control and strength. Although I can now ride a bike, one could tell that I haven’t done it for a while. Although I can swim again, I tire very quickly. Although I can mow the lawn, I need a break in the middle. The way that I look at it is that it took me 17 years to get into the decrepit position I was in with MS. Even though I have this drug that is making me better, things aren’t going to change over night and they are going to take work to get there.

    So, I gleefully look at this year to be positive and gainful!

    Sue

    May 19, 2008

    Spring has finally arrived in Montana. For the first time in a very long time, I am able to do physical things such as enjoying nature, hiking, and biking. I have made a vow to myself that I am not going to take for granted my ability to move freely.
     
    I have started to bike to work (close to home) or go for a walk every day. I remember before I stated Tysabri. I would get mad while watching TV, I knew that the people walking or running across the screen never acknowledged how fortunate they were to be able to do so. Keeping that in mind, I am not going to let any grass grow under my feet!
     
    Biking, although I am doing it, is still quite difficult for me. If land were forever flat, I would still tire out (especially in my thighs and hips). But inclines are still entirely too tough. I have to get off and walk up them. I am sure that I will slowly be building up the muscle mass that I lost and soon will be able to peddle up them also.
     
    Rebuilding my muscle has come a little slower than I would like it to. But it is a constant thought that life will get easier and easier as I get more control over my muscles. It is so wonderful to do something and not have to worry about the fatigue that normally came with activity!
     
    Oh, balance is a little slow as coming back also. Whether I am walking or biking, I can not look backwards while going straight. I will either stumble sideways or almost tip over on the bike. I am hoping this will be one of those things that will recover with practice also.
     
    Hope you are all getting to experience something new and exciting. Even if life is not moving in the direction you hoped for, keep your mind satisfied.

    Sue

    July 11, 2008
    Sorry it has been so long since I had an entry. I do animal foster care and rescue out of my home and have been blessed with 11 kittens lately. They are fun, but a lot of work also.
     
    Two months ago I took a part time job. It is a very dull and ordinary job- I do not use any of my talents or skills at all. But, I am physical in the job. I also bike (when the stars are all aligned correctly) to work. I really think it helps for me to be pushed a little to be physical. But, I do have my days when it is a little much also. This week I have had a few "down" days because of one really physical day. But, in the long run, I do feel that it is ok. I know that I am out of shape. I believe that any out of shape person would have felt poor after a day like that, my bad days just show MS symptoms.
     
    I always wonder how poorly off I would be without Tysabri. I know that I never want to feel that way again.
     
    Summer is progressing along quite well. The hot days still get to me, but not like they used to (prior to Tysabri).
     
    I recently went in spoke to a group of about 70 people in Washington. I am always amazed at the impact my words have on others. I used to be the ones sitting right where they were, listening to an advocate speak about their response to a certain drug. I don't ever remember walking away profoundly changed by what the speaker had to say. But I forget that maybe somebody else did. I always say that it just takes the right person saying the right thing at the right moment and everything else falls into place. I suspect that is what happens to some people when they hear me talk. I just happen to be the right person saying the right thing at the right moment.
     
    Thanks to all of you that have emailed me. I really love to hear from others that are going through the process of looking for a different/better therapy. I know we are all in search for the same thing- recovery. But unfortunately, we all respond to a single therapy differently. For those of you who have emailed me before you started Tysabri, I would love to hear how you are doing after you have begun (even if you have had different results than mine). My address is [email protected].
     
    I look forward to hearing from you. Good luck to everyone!
     
    Sue

    2 new PML cases
    I have been receiving a quite a bit of email since the news of 2 new cases of PML. I thought I would share my thoughts on this subject and why I will not change my course with Tysabri.
     
    The risk of PML was always there when I decided to go on Tysabri. In talking with my family about going on the therapy, we literally had a 3 minute conversation whether I would take that risk or not. We all decided that I would be better off to live while I am living, than to die slowly and watch the world pass me by. If I knew that using Tysabri took a year off of my life for every injection, I would not change my therapy. I am living like one should! I am able to actually PARTICPATE in life. If this therapy that I have chosen should take me early, everyone should know that I died with a smile on face. That old saying, "Live every day like it is your last", I do that. Before Tysabri, I was depressed, house-bound, and dragging my family down with me. Going on Tysabri has been one of the best decisions of my life.  Even if I develop PML tomorrow, I will not regret this decision.
     
    This is such an individual decision. For some, ANY risk will be too much. I guess it just depends on what your perspective is.
     
    The worst thing that could happen is that Biogen would quit making Tysabri because of this. I believe the choice should be left to the patient. If we are willing to take the risk of PML, that should be our choice! Everything in life has risks, if I choose to do something that COULD make my life better, that should be MY choice.
     
    I hope that everyone gives this the gravity it deserves. Are you willing to risk your mortality to have a better life? My answer is and will always be "yes". Now that I have my life back again, I will fight like there is no tomorrow to make sure that it is not taken away from me.
     
    Sincerely,
    Sue

    30th September 2008
    I just returned from a speaking engagement in Spokane, Washington. It is amazing to me how I can deliver the same speech to different people and the reaction can be so different from others I have done.
     
    This time, when I spoke, there were a few people that were driven to tears. It was when I spoke about the first time I was able to ride in an O-Mok-See (see earliest diary entries). I was talking about the emotions I went through when I had finally done something I never thought was possible again because of MS. I talked about the "frustration, anger, depression, and sadness" that released from me as I left the arena. That is when the few began to cry.
     
    I guess that even though I know my story well, I have slightly forgotten how impactful those emotions are on our lives. Dealing with the physical effects of MS is one thing. But dealing with the psychological effects of MS is entirely different. That is one reason why I keep up these diary entries. When we really need someone to talk to, it isn't always appropriate to wait for a counseling appointment or the next conference in our area. It is so nice to have the ability to email or phone someone right when you need it. The psychological problems associated with MS can sneak up on us. It could be as simple as trying to make dinner and you can't get a can open because you don't have the strength in you hands to get the job done. That was the last drop that broke the levee! You need to talk to someone now, or if you are like me, it is after you have cried your heart out for a little bit and come back to reality.
     
    After I was first diagnosed with MS, I remember every book that I picked up said something like, "Only someone else with MS knows what MS is really like." I recall saying that I felt really comfortable with telling others about my MS and felt that I had done a pretty good job explaining myself. I didn't feel "lacking" because I didn't know anybody else with MS. But, when I finally became a part of a MS support group, I began to realize what that really meant. They knew what "tired" meant, they knew what "weak" meant. It really was different.
     
    I have met so many wonderful people (in person and over the internet) because we all have MS in common. It is hard for me to imagine my life without them. For those of you reading this site for the first time, feel free to contact me. I can also put you in touch with others that have allowed me to pass along their addresses. We all need each other, especially at our darkest moments :)
     
    Wishing you all the best,
    Sue Lawrence
    [email protected]

    A Proud Day

    Sue Lawrence at Wedding 1

    Another proud day in the life of "Sue". My brother was married on Oct. 4th. At the reception he wanted us three siblings to dance an Irish jig together, knowing how precious it is for me to have full use of my legs. I was hesitant, but we did it!!!

    Without Tysabri, this would have only been a dream, but it is now a reality. Thanks to my brother, Ben, I have once again known the joy of dancing.

    Sue

    Sue Lawrence At Wedding2

    Update 23/12/08

    For any of you that have been emailing, but I have not sent anything
    recently, please email me again. My computer died, and with it went
    all of your addresses. Sorry! I dearly miss our communications.

    At our local MS Support Group Thanksgiving Dinner, a dear friend came
    up to me. This is what she said to me: "When you first came to us, you
    were not the person you are now. You were so hurt and angry. Now you are always smiling and outgoing. It is hard to believe that you are
    the same person we first met."
    I thanked her for her comment and told
    her that was about the best thing anyone could have said to me!

    Two years ago, when I joined the support group, I did it out of
    desperation alone. At the time, I had tried every medication available
    for MS. I was mostly housebound, and was EXTREMELY depressed. It was probably 6-8 months after joining that I started on Tysabri. I truly
    believe that every change in my attitude and personality are due to
    the physical changes brought about by Tysabri. They were ALL me, just
    a me that I had not been for a long time. I didn't know that I ever
    had the ability to feel like this again.

    For weeks now I have put a lot of deep thought into her comment. I
    have been so privileged and blessed to have such positive results on
    Tysabri. It really has made me a better person, a participating person
    (not just in the physical sense), and a living person. I am very proud
    to be a different person. I am happy to wish farewell to that other
    person and hope that I never have to see her return.

    Happy holiday to all of you! I wish the upcoming year be your most
    "alive" year yet!

    Sue

    Update 17/02/09

    Sue Lawrence

    Sledding 15/02/09

    Although this photo may look like I am sponsored by Artic Cat, this photo portrays much, much more. It is another display of how Tysabri continues to support me in the lifestyle I choose to live. Yesterday I went on my first snowmobile ride (away from the house). We rode good and hard up to several mountain tops, traveling around 25 miles (40 km). As expected, I was wore out by the end of the ride--but MS had nothing to do with it! I am still rubbing my cheeks from all the smiling I did.

    I know that I sound like a broken record, but there is absolutely nothing that I wouldn't do to continue receiving Tysabri. If I developed PML tomorrow, I will still be thankful for every day that I have been on it. Even after almost 2 years, I still catch myself expecting to fail at something because of my MS. But when reality sinks in, I remember what Tysabri has provided for me and I go for everything now.

    Check in again to see what I am up to next, you just never know...skydiving......bungee jumping.... who knows, I may even run for president!

    Hope everyone is doing the best they can for themselves and continues reaching until they are exactly where they want to be.

    By the way, all the Artic Cat gear is second hand!

    Sincerely,
    Sue Lawrence

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