I gave my speech at the MS event tonight and it was a great experience. I can’t wait to do it again! I will post tomorrow with details but here is the speech, as promised. I added a few things in but this is most of it. It was about 20 minutes long. I thought I would be really nervous but as soon as I said “MS Sucks” everyone started clapping and cheering so that made the rest of the time really fun.
Thank you all so much for coming tonight and thanks to Biogen Idec for sponsoring me to speak. This is a great opportunity.
I want to open by saying something that we will agree on. MS SUCKS! MS Sucks for those of us that have MS and for the people that love us. We are moms and dads, sisters and brothers. We are students and professionals. We have passions and hobbies. We are athletes and gardeners and travelers. We had our futures planned without MS.
That being said, MS has had many positive effects on my life. MS has helped me redefine priorities in my life and improve the quality of my relationships. Not only have I met great people because of MS, I have learned to love the ones I already loved even better.
MS can impact you before you have any drastic physical changes. Just hearing “You have MS” sent my mind into a whirlwind. I thought about the active lifestyle I have and the plans I had with my family. I thought about how we moved to Utah two years before to ski and play in the snow and then saw a future of stillness. The diagnosis was more traumatic than the disease. I didn’t have enough information to process what this meant. I didn’t have enough information to take action. I only knew enough to be scared.
After a two month vertigo spell and an MS Diagnosis in late June 2006 confirmed that I didn’t have an ear infection, my life has forever changed. My normal day to day activities haven’t changed much but my diet has changed, I exercise more, I take more vitamins, see more doctors, I try and worry less and I think and talk about MS a lot. I know the more people I talk to the better chance that I will find the answers that I am looking for.
Every doctor I have seen has in one way or another told me how important it is to “Listen to your body”. Almost every book I have read about MS or other self help related topics stress, “Listen to your body”. I would agree that this is important. There is only one problem. Now that I have started to “Listen to my body”, my body never shuts up! I am not talking about my busy mind that never quiets. I am talking about my noisy body. I am sure it has always been loud, but until I started to listen, it wasn’t a problem. Now, I can’t stop listening. I try, believe me, I try. My body yells…”I’m exhausted! My legs are weak! My fingers are cold! My arm is tingling! I’m hungry! I’m full! I’m sleepy!” among other things. The trick for me now is distinguishing what is MS and what is not. For the first month after I was diagnosed, I was sure everything that troubled me was related to MS and I was on the verge of a relapse. Then, when I learned more and stopped panicking, I could calmly say, “Ok, that was just a sneeze” or “I can’t feel my hand because I feel asleep on it”
The first thing I learned about MS is that I needed to form a team. I need a strong team to fight MS. My team starts with my husband and 12 year old daughter. They are the heart and soul of my team. Next, my parents and sister and other friends and family. My employers and colleagues are part of the team. I also have yoga teachers and sometimes personal trainers on the team. The medical part of my team consists of an amazing family doctor, a neurologist, specializing in MS that is the best in the state if not in the country and a gynecologist that I trust. The great thing about my family doctor is that he takes care of me and my MS. We do routine blood work to be sure everything is going ok. We talk about how I feel physically and emotionally as this disease or any chronic disease can really throw you for a loop. My family practitioner or internist is just as important as my neurologist. I See him regularly. I Know that having MS does not preclude me from Cancer, Heart Disease or a million other ailments. I’ve Become vigilant about my health. It is my responsibility to be the boss of my health. I have to lead my team.
The next thing I looked at were all of the Alternative forms of medicine available and how diet and different forms of exercise could keep me healthy. After a lot of research, I started getting rid of junk in my diet. I read books that recommended cutting just about everything out so I knew I would have to find my own way. One book that I bought at the bookstore had a chapter about cutting out CHOCOLATE…(not possible!!).I returned the book. In July of 2006, I stopped eating red meat, in September; dairy went and next was pork and poultry. I started gentle yoga classes and stopped pushing myself to accomplish so much. I learned that I don’t have to be doing something every waking hour. (although I probably still push to much from time to time)I also learned the importance of eight great hours of sleep. This past month I have put some dairy back into my diet and it’s not working for me. I love ice cream and cheese but I feel better without it. Diet is the hardest thing to change but the easiest way, in my opinion to see quick improvements. (especially with fatigue.)
For me, full disclosure was the only way to go with my MS. I’ve talked to people who didn’t even tell their children about their diagnosis and I knew that my girl would know something was wrong and that if I didn’t tell her, she would think it was something worse. Telling Bailey, my daughter was the toughest part of the entire diagnosis. I went through about a month of testing before I knew for sure and I waited about a week until I had picked a drug and knew what the next few months were going to look like. I wanted to be able to answer her questions. I said, “I am going to tell you something that sounds really scary and you aren’t going to like it, but then you are going to ask lots of questions and I am going to show you it’s not that scary. I have MS” She looked at me and just started crying. So, of course, I started. And then I quickly told her the two most important things for a child to hear. I said “I’m not going to die, and you’re not going to get it”. She kept crying as I explained what was going to happen and what could happen but probably wouldn’t. My boss has MS and has been in a wheelchair for over 20 years. That was my daughter’s “face of MS” I told her that there were lots of resources for us and things online to look at and she kept crying. As her crying slowed I reassured her that she did not need to be scared. She said, “I’m not scared, I’m just so sad this is happening to you” I felt like I had robbed her of her childhood innocence that day, and now over a year later, I can look at her and know that I did the right thing. She talks about MS in her class and I can talk about it openly at home.
I also talk about MS openly at work. My office is small, about twenty people and we can spread the word faster than most so I knew that I wanted everyone to know so there wasn’t any whispering or speculation about my health. I am sure it helped that my boss has MS but I received nothing but support. No one treats me any differently. I was also able to find out about our disability policy and other things important to know if was ever out of work for an extended period of time.
The worst part for a family member is feeling helpless. I know my husband wants to make me better every day and he can’t. Besides helping around the house and in just about every possible way, he also raises money for MS by cycling with teams in Utah and on the East Coast. There are so many ways to get involved.
Take care in choosing your doctors and know that you can hire and fire them. They work for you! If they don’t work well for you…find another one. You can even interview them. I ask questions like, “How many of your patients are on MS Therapy? How many of them are doing well?” How do you think diet and exercise impact MS? The first neurologist answered like this….About 98% are on MS Therapy. Wow, how many are doing well? “Well none, its just a matter of how long it takes them to get worse”….uhhhhhh….You’re fired!!
I was diagnosed by this neurologist’s office after demanding a spinal tap. I hadn’t heard anything a week later and called for the results. The PA said, “Nope, no MS” I said, “Really, that’s great!” She said, “I’m surprised no one called you when we got the results last week. I said, “I just had the spinal tap last week” LONG PAUSE…”Uh let me call you back. Two minutes later the phone rings, “Yep, It’s MS” I ask, “Ok? What do I do?” Well, come in the office and look at the marketing kits of the drugs and pick one. I was too scared to wait for a second opinion. I knew I had to be on therapy so I researched as much as I could and chose Rebif. It only made sense to me that the strongest most frequent interferon was the best.
After a month on Rebif, I renamed it Rebarf. I was so sick every day after my injections that I could barely work. The Rebif made me sicker than the MS. I was upside down. At first I followed the ritual of writing down everything about the injection, I would take ibuprofen and ice, auto inject and take more ibuprofen, and get ready to be sick. Then, I thought I was giving it too much attention so I would just do it without any fanfare. I thought that would change things for me and it didn’t.
I saw my 2nd and current neurologist in September of 2006 and he recommended switching to Avonex. He also told me that MS was really active in my body. This was demonstrated in my Spinal Tap results (which first neuro never mentioned) and also when I stood up and closed my eyes during my exam. I would have hit the floor if my husband wasn’t there to catch me. I did my first course of IV steroids after that visit. Woowee…while it did help in the long run it was a tough week after the infusions. I have to admit, I am a bit of a side effect magnet. In switching to Avonex the injections were intramuscular, they were easier to do than the Rebif for me. And, I was only sick one day a week instead of three!
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 learned that Not ONE case of PML has ever been reported when Tysabri has been used as a monotherapy. I was confused about the different reports so when I discovered this, my fears were alleviated.
I was under the impression that Tysabri was used only when all else failed and then found out that Tysabri can be used as a first line and/or second line 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”.
After reading the Tysabri label I found out that Tysabri is “generally recommended for patients who have had an inadequate response to, or are unable to tolerate, alternative multiple sclerosis therapies”… specifically indicating that “inadequate response to” means that the patient is failing their therapy, i.e. having breakthrough disease activity, and “or are unable to tolerate” means that the patient cannot handle the side effects of the injectables and/or the patient is needle phobic, and therefore won’t start a therapy to help control their MS.I realized that all drugs and MS Therapies 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 the infusion.
Luckily, my doctor thought I was a good candidate for Tysabri because I could not tolerate other MS Therapies. If he had refused to see if I was a good candidate or consider my input then I would have sought a second opinion.
Before my first infusion, I had to be off Avonex for a month. What an amazing month! I never realized how sick I really felt until it was out of my system. I have had three Tysabri infusions. After my first infusion, the daily tingling in my face and hands went away. My energy level is more stable. 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. I still have side effects from the drug but they are closely monitored at the Touch Center and I feel like things are under control. I often ask myself if I would go back to Avonex if things didn’t work out with Tysabri and yes I would try it again. I think I will give up a day a week to help ensure health 10 years from now.
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, which, sorry Biogen Idec, I find really boring. But through all of this information, I was able to make informed decisions about my healthcare.
Am I happy that I have MS? Of course not, but MS has made me happier if that makes sense. One positive is that I have permission to take care of myself. Prior to my diagnosis I was always go go go. I did eat ok and exercised when I had time but now if I am tired, I rest (sometimes). I go to Yoga classes even when I don’t have time and I don’t push myself as much. I understand that I if I don’t take care of myself I won’t be able to take care of my amazing family. I want to be well and able for them.
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. It might really stink to analyze your diet and cut out the things you love to make you feel better. Change is never easy but always necessary in dealing with health issues. Confronting Doctors or insurance companies when you think they may be wrong (or bad) is not comfortable but also very necessary.
When I start to get scared, worry or think to far ahead of myself, I think of something simple in the moment to come back to reality. You can only think one thought at a time so if I am focused on something good, then I can’t be worrying about the future. I’ve heard that worrying is praying for something bad to happen by bringing attention to the worst case scenario. Instead of worrying, I plan to keep learning and trying new things to stay healthy and strong.
We have MS but We are moms and dads, sisters and brothers. We are students and professionals. We have passions and hobbies. We are athletes and gardeners and travelers. These are the things that define us.