2013 is just about history and as I look back it has been one of my best years, MS and all. 2013 saw me finally come to terms with my disease and make the decision to fight back. There were some low points, but I did my best to learn from them and grow as a person with MS.
In January of 2013 the benefits of the CCSVI procedure I had undergone in August were starting to disappear. While the surgery was simple and initially effective in eliminating many of my MS symptoms, unfortunately it was short lived. The stress from having a newborn at home along with work was enough to set me back to where I was pre-surgery. CCSVI was a learning opportunity and I began to understand that medicine and procedures could only take me so far, the rest was up to me. In the spring of 2013 I started to explore meditation and yoga. Learning to work with my mind and body really helped me come to terms with MS and it also helped me become comfortable talking to others about what was going on with my health. Talking to others and spreading the word about MS helped me decide to co-captain a MuckFest MS team in the summer and I had an unbelievable experience raising over $5,000 for the MS Society. Raising money and awareness felt great and I look forward to doing more of both in 2014. As my fight against MS goes into 2014 I'm planning to kick it into the next gear. Changing my diet and outlook has improved my life so much and so fast. I'm looking forward to a great year, I plan to increase my stamina and continue improving my walking. By the end of summer I will be able to go on a long hike, maybe even an overnight camping hike. How will you fight back? Fight on! Be a Warrior Today, Donn  I have been grappling with severe neck pain and headaches for the past couple of years. I had seen several doctors to no avail until my new primary care physician recommended that I go to the Boston Pain Clinic. In retrospect, it was a life altering decision and one that has led me to negotiate my pain at an acceptable level every day. I am keeping my pain medication to a minimum and using a number of other pain management options that have proved very effective. I should back-up for a minute and describe how the Clinic works. They have on-site physical therapy, medication management with a full nursing staff, an in-house neurologist, a sleep lab and a number of other services. In particular, I am using a traction device that helps to stretch out my neck, a freezing gel that's called Bio Freeze (an excellent scentless gel that can be bought on Amazon...see link to buy it below), and a TENS unit (subcutaneous electrical nerve stimulation). I just have to note that the tens unit is an excellent way of getting immediate pain relief. It has worked wonders on my upper back and neck. Once the insurance company approves the unit they will also approve monthly supplies for the unit. The unit is small and light and can be on without anyone taking notice. I sometimes leave mine on for several hours at a time depending on my level of pain. What is particularly helpful about a pain management clinic is not only that they address the problem from a 360° perspective but also that they wield a lot of influence with the insurance companies and are able to get things approved very quickly. They were also able to get approval for a three-month extension on my physical therapy which was quite impressive. All this to say that if you have chronic pain, you may want to consider linking up with a local pain clinic. It has definitely changed my life for the better. Happy New Year's, Limitless Lizzie I have avoided writing this blog for two weeks because I am outright afraid of the topic.
My wife will never understand my illness. She hates the diet we are both now on, because we cannot afford for her to eat the way we used to while also funding my “keep MS at bay” diet. She will most likely never get into yoga and meditation as much as I am and will not want to accompany me to workshops or retreats. I will need to get used to practicing in the closet, alone. The argument we had two nights ago around me not wanting to go out and do the things I used to do, will probably not be the last of its kind. I don’t drink, can’t stand loud places and can’t seem to last staying up past 10:30. I cannot eat a single thing offered at a restaurant and somehow ordering plain fish or meat with vegetables just does not seem to do it for either of us. It is missing the element of adventure that I know she is missing. We are strapped for cash. She wants to spend money on what we used to- adventures- I want to spend it on medical treatments. Treatments that are not covered by insurance and cost $165 a pop, like Rolfing, cranial sacral therapy and magnesium IVs. We are both caught in longing for the past and fretting over the future. In seeing how my being sick all of the time affects my wife, I attempt to do things that I know will make me feel worse. I take a sip of wine because she insists I’ll love it. I stay up late because she wants companionship. I eat out and deal with the stomachache and fatigue that lingers for days afterward. And then I secretly resent her. “She doesn’t understand me,” I tell myself. “She doesn’t even know what it feels like to have a headache for longer than an hour, let alone seventeen years.” And these sour thoughts make me feel worse and the worse I feel, the nastier I am to her. My fear is in the admitting that I am not, nor will I ever be, the person I once was. We are told to not think of MS as who we have become. It is just something we have, not something that defines us. But it does define me. My existence has completely shifted towards management of my pain and symptoms. I spend a third of my day on it. That is more time dedicated to illness than any other single thing. Including the rest of my person. Including my wife. No wonder she misses me. The challenge for me, and maybe for many of us, is to insist that I am worth the care and treatment I give to myself. So much so, that to get caught up in letting others, even our most beloved, sway us from what we know to be right for us is seen as a setback in self-care. It is my own insecurity about the amount of time and money I spend on me, and the fact that I am now on disability and only bringing in half of the income I used to, which causes me to feel shame. Shame that plays out in trying to placate my wife in what I imagine she desires. Truth be told, my wife doesn’t really care if I drink a glass of wine with her and she doesn’t care if we are out dancing at some noisy club or if we are dancing in our living room. She may be nostalgic for the days that I was a dancing queen on the floor for hours on end, her spying on me from the corner, but what she really wants is to share in joy with me. I have a large supply of that. And love too. --Emily Royce Have you ever had that moment where you totally changed your point of
view on something? Not something like whether you like carrots or spinach, but something that you strongly believed in? Not so long ago MS had me. Even though I have a great support system of family, friends, and doctors my health was declining and I wasn't sure where I was headed. After being diagnosed I went through numerous medicines, doctors, and therapies. Not to mention braces and canes. It really seemed that things weren't going to improve anytime soon, or ever? Can you improve your health, even when you feel you have the MonSter inside of you? I was getting used to reading "that's just MS!" as an explanation for just about anything and everything from headaches and fatigue to skin ailments. I was starting to think I might be on an out of control ride with a disease that was quickly ruining me. Then it got worse, I picked up some sort of "mono like" virus that crippled me for weeks. I thought I wasn't going to last much longer. But I changed MY mind, I wasn't going to lay there and take it anymore. I made drastic changes to my life in changing my diet, my workout routine and the outlook I possessed on my body. Since taking a stand things have improved exponentially. No more robo leg or cane, no more being exhausted constantly and twitchy. Yes there are still tired days and exhaustion, but not as often and not for as long. Have you changed your mind about MS, have you made any positive changes and gotten results? You can do it, change your mind and take back what is yours, fight on! Be a Warrior Today, Donn  Dealing with MS is a huge challenge in itself. Add surgery and post op complications and things can go downhill very fast. Fatigue can set in quickly, and before you know it, you feel depressed and defeated. As a nurse and woman with MS, I recently experienced an overwhelming health care experience. I hope that by sharing my story it will help other patients through their own experiences just a little easier.
My medical history is very complicated and I will just say MS just adds to the medical symphony I deal with each and every day. I recently underwent a hip replacement. Having had the prior hip done last year, I wasn’t concerned about the post op recovery. I breezed through it and was dancing at my daughter’s wedding three months later. However not all surgeries are alike. After this surgery, I developed a bladder infection, a blood clot and my blood pressure skyrocketed. As usual, on day three post op, my health care providers came in to prepare me for discharge. Thankfully, I know my body and its nuances very well and something made me insist on an ultrasound in my left leg to rule out a blood clot. I was experiencing pain that I knew was not there pre op. The hospitalist assured me that a clot in my non operated leg was highly unlikely. I insisted and low and behold, I am glad I did. Self advocacy is so important. Learn to speak up and verbalize your thoughts. As a seasoned medical professional, my best advice is to make your provider listen. Make them really listen. Slow them down if you have to. All providers are busy and sometimes need help to help you. This leads me to my next obstacle. I was discharged home on blood thinners and developed the two other complications I mentioned above. The high blood pressure was beginning to become worrisome to me. Luckily I was able to monitor my own and final made the decision it was time to go to the ER. The first Emergency room visit was 8 hours and I was sent back home after my pressures stabilized. I then developed a fever of 103. At this point, I was extremely sick and frustrated. I began to have symptoms of an exacerbation of my MS. We all know that stress makes the chances of exacerbations increase. Not only did I have physical stressors but now my mental state and fatigue were getting the better part of me. All I could think about was how do patients who have no medical background deal with all of these issues, and navigate through the system. The exacerbation put me over the edge mentally and physically. It was time for a family member or visiting nurse to take control. Part of dealing with issues that occur is knowing when to give up control, and let others help us. What could have been a botched symphony needed a conductor. So here is my best piece of advice, find a primary care provider who listens and knows you well. One call to her and she organized my care. She realized I was too sick to be treated on an outpatient basis. She had me admitted and she organized conference calls with my four providers. Each provider participated in making up a plan of care to make me healthy again. Finally everyone was on the same page. So what I want you to take from this blog is that not everything goes according to plan. When life throws you lemons, there really are ways to make it into lemonade. Always find a primary care doctor who listens and you have a good relationship with. Speak up. You know your body and when something isn’t right. When you are depressed and feeling defeated let someone else speak for you. Family, friends, providers can all be advocates if you just ask for help. Added stress and fatigue just make things worse. It is not a sign of weakness to ask others to lend a hand. There will always be a day when you can lend that hand back to them. There were days when I never thought I would dance again but low and behold its time for those dancing shoes. It will have to be a slow dance in my case but dance I will. --SUSAN RN The Paleo diet experiment has been going well but what a test of will power! Since I’ve gone “all in Paleo” I haven’t had any slip ups avoiding Gluten or Dairy so far. Along with eating the Paleo diet I have cut out nightshade vegetables.
“Nightshades are a family of plants that contain specific alkaloid compounds that can be irritating to those suffering from joint pain and inflammation.”(Sanfilippo) The most common nightshades are tomatoes, white potatoes, eggplants and all peppers. Black pepper and sweet potatoes are not nightshades. Try eliminating nightshades for thirty days to see if you notice a difference in your joint pain or inflammation. After thirty days reintroduce one nightshade at a time back into your diet so that you have a better chance of pinpointing the offending veggie. My thirty days of being nightshade free are nearly up so I will begin reintroducing some of the veggies back into my diet, first will be tomatoes…it’s not a salad without tomatoes!! Keep up the fight! Be a Warrior Today, Donn Sanfilippo, Diane Practical Paleo 2012 I have spent years running away from chronic pain, believing that my only chance at joy could be found in the absence of its constant presence. Recently I was confronted with an idea utterly contradictory to this- that in embracing my pain just as it is, peace can be found in that very moment.
Jon Kabat-Zinn’s “Mindfulness Mediation for Pain Relief: Guided Practices for Reclaiming Your Body and Your Life” has become a part of my daily practice. I am finding that carving out ten to thirty minutes to just BE with my pain, is something I actually look forward to. I get to listen to it, breath with it, nurture it. You see, I am just coming to terms with the fact that my pain has something to tell me, something it has been trying to tell me for seventeen years. And as I grew more stubborn, more set in my ways of what would work for the pain or not, more preoccupied with the next thing to try ON the pain rather than focusing on the pain itself, it made sure to grow in intensity. Over the years I have waffled back and forth between aggressively attacking the pain with whatever new therapy was next on the list, to giving up completely. The cycle of exerting a lot of effort with high expectations, only to be let down when the therapy did not work, was too emotionally crushing for me. So I would give up until the thought of living with this pain forever became too much to bear, then I would research and throw myself into another round of “getting better.” But I have always been looking for the solution outside of myself. And I have endlessly avoided looking into the roots of my suffering. Reading up on the Four Noble Truths of Buddhism gave me great insight into how to connect with my suffering and relieve it. My hope was restored and my faith in myself strengthened. (See “The Heart of the Buddha’s Teachings: Transforming Suffering into Peace, Joy, and Liberation” by Thich Nhat Hanh) There is no cure in it, only mindfulness. This path of self-discovery could lead me to less pain, or it could not. The point is, there is no goal, no expectation, and no end result already in mind. I am just listening to my pain to listen, being with it just to befriend it. Tara Brach’s cd series “Radical Self Acceptance: A Buddhist Guide to Freeing Yourself from Shame” has kept me on this path of sticking with it. Showing myself love, and letting go of judgment for being less than perfect, makes it a lot easier to embrace this holistic practice. It would be easy to drop off and add pain meditation to the list of failed therapies. In all likelihood, it will not be a cure. Some of that healing will come from within and some of the pain is so ingrained in my system now, that bodywork and more experimental therapies may be necessary. For the time being, I am going to be okay with where I am at. In the body I have. And I am going to keep sitting with it, day after day. --Emily Royce It's the second week in December and I haven't bought one present, sent one Christmas card, or hung one Christmas tree ornament. Every December my husband and I take our son to New Hampshire to get the festivities rolling. This year I couldn't even get around to planning our winter getaway. At first glance, this could be seen as having the holiday blues but in fact it's quite the opposite. You see I've been stable since March when I first started Tecfidera. After a few months I felt so well that I started the adaptive rowing program at Spaulding Rehab in August and began rowing a total distance of 2800 meters a month. This month I am on pace to row just shy of 14,000 meters a month. To the trained athlete this may not seem like much but to a person suffering from secondary progressive MS it's the difference between losing hope and feeling like I can fight back. So you see, I can't afford to expend too much energy on the holiday. Besides, no one ever remembers what you bought them for Christmas.
My days are carefully orchestrated to include the right amount of exercise, a well-balanced diet, and most importantly enough rest. Both my husband and I come from big families and our calendar is full from Thanksgiving until just after New Year's. Unfortunately, not everyone understands how stressful the holidays can be and what a great impact they can have on someone with MS. Contrary to how it may sound, I am not opting out of holiday season activities. I just can't allow my condition to take a step backward. in order to reduce stress, save time, and energy I am going to opt out of finding personalized gifts and instead give gift cards, send electronic Christmas cards instead of the paper cards and put my tree together a little later than usual. I am meeting my new neurologist tomorrow for the first time and if Santa is kind, she will be at least half as good as my former doctor. My husband reminds me that I must adapt, innovate, and overcome. If you have some tips or suggestions that work for you, I would love to hear them. Limitless Lizzie IF YOU WOULD LIKE TO BE NOTIFIED WHEN NEW PATIENT BLOGS ARE POSTED, JUST ENTER YOUR EMAIL ADDRESS (SEE TOP RIGHT OF THIS PAGE). Note that we do NOT sell or distribute any information. Over the past few months I have been steering my diet towards becoming Paleo. Well here we are the week after Thanksgiving and I’m all in Paleo! It hasn’t been as hard as I thought. In fact I love it. Gone are the days of crushing a bag of chips and a soda, now it’s more like a bowl of carrots and some lemon water. I’m feeling much better.
I was inspired by Dr.Wahls TED x video which my Mom emailed to me when I was laid out by Mono so I had plenty of time to look into it and do some research. It seemed pretty simple, just eat a ton of fruit, veggies and meat every day. This is what your body needs to function at peak performance. That wasn’t the hard part...the hardest was NOT eating the dairy, grains and cutting out all of the junky processed food. Watching my diet is something I never thought about. I’m tall and skinny so as long as I wasn’t lugging around a gut everything was fine right? Wrong! Now that I am conscious of what I am consuming I have noticed that my cog fog is clearing up and I also have some more energy. I’m not running up mountains or anything but there’s more in the tank. To get started I bought Practical Paleo which is a great guide full of information and recipes. The reason I chose this book over many others was the fact that it has an entire section dedicated to managing the symptoms of multiple sclerosis and chronic fatigue and a 30 day meal plan full of suggestions. If you’re tired of pain in your joints try cutting out Nightshade Foods . This was my first step towards going Paleo. Cutting out potatoes, tomatoes and peppers wasn’t super hard but I did notice I wasn’t as achy as usual. Cutting out dairy and grains has been much harder because it seems that everything is made of dairy or grains! Today there are many gluten and dairy free products available...you just need to look a little harder when you go grocery shopping. Coconut milk ice cream is an incredible substitute for the more traditional dairy Ice cream. What it all comes down to is...are you ready to make a positive change in your life? Only you can take charge of your diet and make the necessary changes. Try cutting out nightshades, grains or dairy for a week or two and see if you notice any difference in your body? Search Paleo recipes as there are a zillion available on the web. Keep up the fight! Be a Warrior Today, Donn |
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