Love Conquers All… (Including MS!)

Posted on February 13, 2015 by MSAA

By: Meagan Freeman

Valentine’s Day brings to mind images of unconditional love, commitment, and romance. We see the theme as we stroll through any store during the month of February, the candy hearts, the red roses, and the chocolate. Sometimes, we forget what this concept truly means, and get caught up in the “commercial” aspects of the holiday, instead. If anyone is looking for a true story of love, hope, inspiration, and unending devotion, I have one for you.

My grandparents met on a Southern California Beach in 1944. My grandmother wore a bright yellow bathing suit, as she sat in the sand under an umbrella. My grandfather always described her as “the most beautiful girl I have ever seen.” Both of my grandparents served in the military during World War II, and both were stationed in Santa Monica, CA. It was love at first sight, according to both of them. This bond grew in the following year, and they were married in a beautiful ceremony in 1945. This strong bond they had formed would be tested in the coming decades, and it would carry them through the most difficult times.

In the following decade or so, my grandparents had seven children, three girls and four boys. My mother was the oldest child. Sadly, my grandmother began to develop neurological symptoms such as weakness and emotional instability. Eventually, she experienced seizures on a regular basis. This led to a fairly rapid decline, leaving her wheelchair bound by age 40, and bedridden by age 45. Eventually, she was diagnosed with a rapidly progressive form of multiple sclerosis. The advice regarding MS in the 1950s-1960s was generally to “get in bed and stay there,” and “do not ever exercise.” As we know, this is some of the worst advice for MS patients.

When my grandfather was faced with the decision whether to move his beautiful wife to a nursing home or keep her in the family home, he insisted she remain with him. He lovingly cared for her for over a decade in the home, all while raising the seven children and working to support the family. He helped her to dress in her best clothes during family gatherings, brushed her hair, and made sure she was a part of the family in every way. My grandfather was a photographer, and he took hundreds of incredible family photos, always including my grandmother.

Eventually, my grandmother lost her battle with MS. My grandfather carried on for many more years, visiting the grandchildren (myself included,) gardening, attending church, and waiting for the day he would see his wife again. His faith was strong that he would see her again someday, and he spoke of her often. He passed away in 1994, and on their grave is the quote that sums up the undying dedication they showed for one another through the most difficult times life could throw at them: “Suffering disappears, love remains.”
Love is indeed forever.

My grandparents on their wedding day, 1945

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

Hard Family Conversations and MS

Posted on February 11, 2015 by MSAA

By: Matt Cavallo

During my initial hospital stay and subsequent diagnosis of MS, one of the biggest challenges that I faced was talking to my family. We had a history of multiple sclerosis in my family. My dad’s sister, Loretta, was diagnosed with MS in the 70’s and she passed away in 1981 due to complications of the disease. During that time, there was little in the way of treatment available to help her. Not only that, but the disease progressed very quickly. She passed when I was only four, but I still can remember her. She was in a wheelchair and she couldn’t talk, she could only mumble and moan.

While I was laying in my hospital bed contemplating my diagnosis, I was thinking that I shared the same fate as my Aunt Loretta. The whispers around my bed from my family members supported my fears. As a result of these fears, the conversations changed. Family members started treating me differently. They were walking on eggshells around me, careful not to divulge any of their true fears of my future. Even with treatment, as my functionality returned, everyone held their breath for MS to strike again.

Six months later I had another drastic exacerbation. Then, twelve months after that another one. It seemed like I was following Aunt Loretta down a perilous track. And my family treated me that way. It was to the point where I didn’t want to have conversations with them because I wanted them to remember the person I was and not the person I had become with MS.

However, there were a couple of things I had going for me that my aunt didn’t have. One was timing. In 2005 there was a lot more knowledge about the disease and many more treatment options available than when she had it in the 70s. The second thing was history. I knew my Aunt Loretta’s story and I didn’t want mine to end the same way. Family members told me that she didn’t like the advice she received from a doctor, so she never went back to that doctor. I used that information to motivate myself to learn as much as I could no matter if the news was good or bad, scary or hopeful. I just wanted to get the most objective, up-to-date information available to fight. Lastly, I had hope. In the seventies there was little known about the disease. Today, there is research and scientific breakthroughs, social support networks, and hope.

If I could go back in time with all I know today about living with multiple sclerosis, the fear and egg-shell conversations with my family would be dramatically different. I would use the resources around me, like My MS Journey, to educate myself and ease my family’s fears instead of staying silent.

Today my family conversations are no longer about the horrors of MS. My family and I now talk about my future and my kids and all of the awesome stuff that normal people talk to their family about. Today we are a normal family and I just happen to carry the torch of multiple sclerosis. I have had it for approaching ten years now and I am still working, playing, being a dad and living the life I always wanted to live. That makes me proud to talk about my MS journey and how I have lived a great life despite my diagnosis.

Resource:
https://mymsaa.org/journey/

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

Communication is a Two-way Street

Posted on February 9, 2015 by MSAA

Sometimes you may feel like you are talking at someone. As if the things you are saying hit an invisible force field and bounce back toward you with no impact on the person you are speaking to. When this happens it can cause feelings of frustration.

You may think: Are they even listening? Do they care? How do I make them hear what I am really saying (and not just what they want to hear)?

Communication can be difficult when the person you need support from is on a different page. You may feel they are unresponsive, unrealistic, or uncaring. The other person may be thinking about something totally different, they may be unmoved by your appeals, think you are incorrect in your logic, or something else entirely.

You can only do your best to communicate your needs and sometimes you may not get those needs met. Why, because communication is a two-way street. Talking at someone rarely effects change. To make a difference it often requires both sides to give a little and meet somewhere in the middle or for one person to make concessions to another.

When no one gives a little, situations can explode. For example: “I need help with the laundry, it’s getting too difficult to carry it up and down the stairs” over time can turn into “You didn’t change the laundry again. Do you even care about my fatigue and how that makes me feel?”

Or “Doctor xyz about that medicine makes me really uncomfortable.” Response: “You will take the medication prescribed, I’m the expert here.”

If both sides can collaborate and agree to a plan of action it may result in a better outcome. “Let’s make a plan for you to help me with the laundry every Monday so we can all have clean clothes for the week.” “Okay, but if I forget please just remind me when you want it done before getting upset.”

Or “If that doesn’t work then let’s talk about what other options for treatment we have available and try to select something we can both agree on.” Creating a clear plan of action can remove frustration and set realistic expectations for each party.

If ultimately, the other person refuses to listen or budge on an issue you may have to try and get your needs met in other ways. “My mom agreed to come over to help wash the clothes” or “I’m finding a new doctor.” As you can see in some circumstances seeking other support can help to resolve the issue but sometimes at a steep cost.
If you run into a situation where someone will not meet you in the middle you will need to review the pros and cons of your alternative options and remember that communication is a two-way street.

My Life with MS

Posted on February 4, 2015 by MSAA

by Shannon Loftus

I am a stay at home, work at home, home-schooling mom to the world’s most awesome child – my son Nathaniel. Yes, I have multiple sclerosis, and it does rule my life. But, every day that I wake up and can see my son and husband, can move my limbs, even if in pain, is another day I am thankful for.

I was officially diagnosed with multiple sclerosis in the fall of 2009, although the symptoms had been ongoing since I was a freshman in high school. With this diagnosis, I also found out I had a brain tumor that, of course, during all the diagnostic testing was the only other option for the symptoms I was experiencing. Fortunately, the tumor is on the pituitary gland, benign, and not growing. I recall that on the day I was diagnosed I had a laugh-attack right there in my neurologist’s office. Multiple sclerosis is not funny by any stretch, but I found the double diagnosis to be downright morbidly hysterical at that moment. What luck! Shortly thereafter came the diagnosis of epilepsy, followed by spinal stenosis. Despite all of these diagnoses, I struggle through it all with my head held high (sometimes), staying at home, working at home, and home-schooling my most precious gift that keeps me going – my son. I am also a co-leader of a multiple sclerosis support group here in my hometown. It is a pretty fun bunch of folks, MS aside!

MS has thrown a lot at me. I have been blind in one eye and half blind in the other, at the same time. I have been nearly unable to walk, hobbled and I use a cane more often than not. I have been hospitalized, and I can no longer function as the field archaeologist that I once was. I am losing the use of my left arm, and have left side weakness. The stenosis of my spine has made walking for more than a hundred yards nearly impossible. Standing, sitting, laying down are all painful.

I have adapted, not by choice, but out of necessity. MS sets the pace, so I shifted to private consulting from home, and while not my dream job, I am rewarded with a gift that I know I will be forever grateful for – as much time spent with my son as possible, the opportunity to watch him grow while my eyes still work, and the special time we get to spend snuggling up while he still thinks mom is cool, hanging out at the movies, and hitting the pool in the summer.

I have also experienced depression. I once laughed at the notion of MS and depression going hand in hand. I was so wrong and I was very humbled by my year and a half long journey through a tunnel of personal darkness. I now have immense compassion for those suffering depression, no matter the cause.

I am honored to be able to share with others my journey of life with MS. It is not always fun, but it is what it is. I try to find the humor in life, and frankly the trifecta of illnesses I live with provides a bottomless well of material in that regard. I would love to share the ups and downs, ins and outs, and the overall experience of what it is like to have MS. The disease affects each of us very differently, and I believe it is only through sharing our experiences that each of us finds comfort, solace, and the ability to keep fighting.

Be Thankful for the Day!

-Shann-

Family Ties

Posted on February 2, 2015 by Angel Blair

The relationships that we hold with family members are some of the most significant and influential ties that we will carry throughout our lifetime. These bonds, whether good or a little rocky at times, help to build the foundation of our relations with other people. Because these relationships hold so much meaning and importance, individuals put forth much effort into maintaining them to ensure they remain intact. What helps to make this possible?

A key element in all types of relationships is communication. Being able to disclose feelings, concerns, and needs to others is important and can build strong ties in the connections. Reading other people’s minds can be a challenge, so talking openly about things is a good step to knowing what the other person is feeling. This isn’t easy for everyone; it can be difficult to bring matters to other people’s attention and talk about different issues, especially if they are personal or sensitive in nature. Because of this it’s important to think about whom you feel comfortable disclosing things to if challenges arise.

Having that go-to person/support in place is essential to communicating effectively and being able to share your personal experiences. Sometimes you may seek this type of support outside of your family structure which may inadvertently upset family members. So then with family, you may need to have a discussion about communications barriers or discomforts to be able to disclose why communication is difficult. This can help to reduce confusion and misconceptions in these relationships, and still leave the communication lines open. As family remains one of the strongest ties in connecting to others, communication will remain an integral part of this system.

Keeping Track of Your MS

Posted on January 30, 2015 by Samantha Schech

We all trust and hope that medical providers keep accurate records and maintain documentation in an orderly fashion. But things happen – papers get misplaced, lost, or destroyed and when this happens, the patient suffers.

So what can be done in advance to reduce the chances of this negative effect?

Keeping track of your medical records is the best way to assure that the information about your MS treatment stays organized. However, this can mean different things to different people. Finding a way to organize and keep your medical records in a way that makes sense to you is important.

Some individuals may find sorting records by year helps to track progression or change over time. While others prefer to sort based on testing or specialty, tracking things such as MRI results, bloodwork, or therapy. No one way is better than another. It is about finding a way that makes sense to you and one that will help you along the way.

Take into account the type of materials needed to organize your medical records. Three-ring binders are helpful in securing documents, making sure they stay in place and are not easily lost. Dividers and tabs can be used to distinguish a change in the record, whether it’s a year, type of test, or doctor. Labels written on with dark marker can be placed on the outside of a binder to help identify what is inside.

Depending on the size of your medical record, bring the record with you to an appointment. It can be used as a reference with the doctor, or can be a place to take notes during a visit. After the appointment, ask the office staff to make a copy of any records discussed at the time of the appointment and place them into the organized medical record.

By keeping track of your medical records, you are taking an active role in your health care. In which way do you keep track of your MS? Which system works best for you?

When people say, “but you look so good!”

Posted on January 28, 2015 by MultipleSclerosis.net

One of the more frustrating things about having an invisible illness like multiple sclerosis is having people tell you, “but you look so good!” It’s incredibly difficult to explain to others what it is like to live with MS, and because so many of the symptoms associated with this condition are not apparent on the outside, it seems impossible for those who do not have MS to understand. We recently posted a story from one of our community members who expressed her frustration about people telling her she “looked good”, and our Facebook community responded in support! Here are some of the comments that our community members shared!

People just don’t understand

I understand, I have had MS for 11 years and I hear it all the time, “you look good!” Well I don’t feel good! People just don’t understand this disease!
Don’t waste any more time trying to explain what you’re going through. Most people just don’t get it. If you have a support system, terrific. It takes too much energy to try to educate everyone you know about MS. Don’t be afraid to say NO. I’ve lived with MS for 25 years. In that time, most people I know have “gotten it” through my behavior and actions. Check with your local MS chapter. They have literature to explain MS. Join a good support group. It helps.
While these words are true most folks mean well its more an issue of them not understanding MS. They understand what they can see, that’s all.
I get “how are you feeling? You look good!!” almost daily. Some days I wish I looked like I felt so then maybe people would realize “oh, she’s a mother of four and looks like she feels terrible despite her busy/demanding daily routine”. Pep talks are good, and positive reinforcement is also good. Telling me I look good is pointless.
I always tell the people that I look so good at the outside because there is nothing beautiful left at the inside. It is rotten, so I will do everything to keep my outside pretty.
I just wish they could be in my body for one day!
That statement makes me feel like I do not have the right to feel bad, or to “sit out”. It says the person talking has a total lack of understanding of this disease.
It drives me nuts when I hear that! It diminishes my feelings. No, I don’t want to roll around in “whoa is me,” but heck, this is real.

People think I’m lazy

My family thinks I’m lazy and expects me to push through it. I’ve been a plumber for 25 years and a timber faller logging for 7 years… I could get disability, but I want to work, I just can’t over do it.

People mean well

I think many people mean well by saying it. The truth is, I don’t venture out when I don’t feel well. I had a cop question me using my handicapped permit earlier in the week – checking my ID against it and he said “these aren’t for convenience”. I told him that he should be thankful I felt like crap or I would tell him what I was really thinking.

I don’t feel like I look good

MS made me gain weight, changed my shoulder and my legs, and my eyes cross. My body hasn’t felt fit in years, so please don’t say that I look good .

I don’t mind if people tell me I look good

I don’t have a problem with people saying I look good. All I can say is thank you.
I still like to hear, “you look good,” even if it’s not true.
I rarely talk to anyone about how I feel because they “know exactly how I feel because they do too”. Even though they don’t have MS.

What about you? How does it make you feel when someone says, “but you look so good”?

New MSAA Guest Blogger

Posted on January 26, 2015 by MSAA

Meagan Freeman

I am thrilled to join the MSAA organization as a guest blogger, and I would like to introduce myself. My name is Meagan Freeman, and I am a licensed family nurse practitioner, blogger, MS patient and mom of 6 from Northern California.

I was diagnosed with RRMS in 2009, after experiencing dense numbness of my right torso. This was numbness like no other I had felt, like my torso was not even a part of my body. I was in the middle of my Bachelor’s program in Nursing, working as a full time ER nurse, and a mom of 6 at this time. The diagnosis was devastating, and demotivating. Quitting school was something that I thought about almost immediately, and over and over for months. I tried to ignore those demotivating voices in my head. The ones that say, “you should just stop now. What is the point? Take the easy road, forget it.” I was halfway through my Bachelor’s program, should I quit? I was just going to end up in a wheelchair. Bedridden. Nonverbal. Just like my grandmother. What was the use of finishing school? What was the use of doing ANYTHING now? Images of my grandmother raced through my mind. My maternal grandmother was incapacitated in my memory, due to a long battle with progressive MS. These images were terrifying to me, and I pictured myself in that same state.I thought about quitting school many times, but fortunately I continued.

I finished by Bachelor’s degree in 2010, and began my Masters in Nursing/Family Nurse Practitioner program that fall. It was the greatest challenge I had faced since diagnosis, and I would not be allowed to take “short cuts” because of my MS. This was the first time in my life that I realized that my disease would not grant me any free passes. I would have to achieve and complete this program purely on my own, despite any illness.

An important lesson I learned during the 3 years of higher education I pursued as an MS patient was that we are capable of self -defeat. It would be so much easier to quit, right? On those difficult, painful, fatigue ridden days? It is so tempting to give in and take the easy road, and many people succumb to this path. It doesn’t require MS, either; many individuals find any excuse to give up and take the easy road. You must find that voice that encourages rather than discourages. Find that voice that will carry you through those days. Nothing worth doing is ever easy, so make the choice to be the hero of your own story. You have the ability, now you just need the psychological strength.

On my graduation day, in May of 2012, there was light. Spring, warmth, and brightly colored flowers surrounded me like a renewal, out of the cold winter and into the sun. Every detail of that day is frozen in my memory, never to be erased. The smell of the freshly cut grass, the slow march into the ceremony, the smiles. Like a wedding or the birth of a new baby, this was a day that would live in my mind for the rest of my life, though there was a sense of disappointment along with the accomplishment. There was a pre-graduation let down, and I knew that with the completion of this goal, I would need another. Yes, this was a successful endeavor, but what would be next? For now, I could not focus on anything but that moment. This was a day to spend celebrating, laughing, and feeling a sense of pure joy and relief. Why trouble myself with the future today? Today was a day just to be present.

After graduation, I began to practice in a primary care office as a nurse practitioner. I saw many patients during my day, managing chronic illnesses and performing physicals. I experienced the irony of being both a healer as well as a patient, and some days were not easy. I also began to write more frequently, which was always my lifelong passion. I started to blog, and it was incredibly therapeutic to get feelings down on paper. Today, I have the opportunity to blog weekly on my website, and guest blog for several wonderful organizations. I am happy to be able to pursue these things, and with the support of my husband and family, I hope to continue for many years to come.

Being the “hero” of your own story is the theme of most of my writing today, and I encourage every MS patient to think of life as a story that will someday be told. You have the power to make that story whatever you want it to be, so make it incredible, powerful, and positive. Make that story one that will inspire generations to come. You have the power to achieve anything and everything, regardless of a multiple sclerosis diagnosis.

From Junk Food Junkie to Health Food Nut: My New Year’s Resolution

Posted on January 23, 2015 by MSAA

By: Jeri Burtchell

Happy New Year! I don’t know about you, but I’m starting fresh, determined to make this year better than the one before.

I try not to make unrealistic promises to myself in January since I’m not so “resolute” when it comes to my resolutions. Instead, I set the bar low so I can cross it–even if I have to trip and fall to make it over.

This year I chose only one goal: to eat better. I figured if I can do that, maybe there will be side benefits like losing weight or feeling better.

I confess I’ve been a junk foodie in the past. I use air quotes when I say the word “food” as some people would beg to differ. Yes, I’ve eaten leftover french fries from the bottom of a McDonalds bag a day later. Am I ashamed of that? You bet.

It’s hard to be a freelance writer covering MS and ignore my own bad habits. The latest news regarding the gut microbiome and how it can influence a whole host of diseases has been in the news and on the internet so much I can’t help but feel guilty hoisting a Coke to my lips as I look on and take it all in. Maybe there’s no definitive proof that diet influences MS, but if I can control what goes in my mouth on the off chance I might feel better, don’t I have an obligation to do that?

So enough was enough. I slurped up the rest of my Wendys frosty and pledged to tighten up my definition of food. I mentally stationed a miniature bouncer at the corner of my mouth who only lets the good foods pass.

I wish this bouncer had a wallet full of cash, though. My first stop after I (loosely) defined my resolution was the grocery store. Who knew eating only organic whole foods and raw honey or cold-pressed virgin coconut oil was only a pastime the rich and famous could afford?

The upside to taking out another mortgage in order to eat right is that you are hyper-aware of expiration dates and the gradual decomposition of your quality fruits and veggies. If I wanted everything to turn to compost in the vegetable drawer I would have cut out the middleman and simply buried my hard earned dollars in the back yard.

Not everyone in the house is on this health food bandwagon, however.

My teenager hates vegetables and my 91 year old mother is set in her routine, and she’s in great shape. “She’s earned the right to eat what she likes,” said her doctor, and I swear I saw Mom stick her tongue out at me.

Even though this is my resolution, I’ve found myself asking “every day??” when I think about how often a person is supposed to eat like this. For a terrible cook (another confession), eating things that aren’t ready to “microwave and enjoy” has been a huge challenge.

So I started out with something easy. We all like shakes, and smoothies are like shakes, right?

I got out the old Hamilton-Beach blender and blew the dust off. I looked at all the fancy stuff I’d bought at the grocery store and began flinging in a handful of this, a spoonful of that. I topped it all off with a generous heap of kale (because you can’t toss an Oreo cookie without hitting a story about how good kale is for you), and I set the blender spinning.

It looked…disgusting! The green of the kale, combined with the red of the strawberries gave the concoction an overall brown color. Even though it looked kind of like a chocolate shake, my teenager wrinkled his nose, well aware there had been no chocolate involved in the making of his mom’s new drink.

Ignoring my own urge to pinch my nose closed before gulping it down, I sipped mine and smiled, nodding to him to give his a try.

It turns out we both loved it so much it has become our daily ritual–and the uglier the better. We throw every healthy thing we can find in there.

Besides the smoothies, I cut out processed foods, refined sugar, and carbs. I have no clue how–or if–it affects my MS, but I can tell you this: in the 22 days since I began, I’ve lost 5 lbs., I don’t need afternoon naps, and my brain fog seems to be lifting.

I can’t wait to see how I feel a month from now. Unlike past resolutions, I think I just might be able to keep this one!

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

Do What Makes You Happy

Posted on January 21, 2015 by Angel Blair

Happy. It’s such a simple word that carries with it so many huge notions and feelings. It is strived for and achieved every day and thought of as an important goal by many. People wish to be happy. I think there is an innate characteristic that many people hold that strives to make other people happy also – to obtain their approval, to have others’ needs be granted and satisfied too. It is human nature to put other’s needs ahead of your own at times, especially in close and supportive relationships. But I think too often people tend to ignore or forget their own needs and their own paths to achieving happiness. It’s not through any fault of their own; when we care for others it sustains us and creates rewarding and happy feelings that tend to satisfy us. But what about the things you can do for yourself that make you happy?

Ok, so realistically life can be crazy and hectic at times, so who has the extra time to spend to do all of the things that ultimately make you happy? Challenges arise, life gets complicated, and things get in the way so it’s hard to focus at times. But sometimes it’s about the little moments, the small fragments of time where you can step away from the obstacles and do something that makes you happy, no matter the task. Life is too precious and too valuable to not do the things that you enjoy and that will bring you happiness and moments to treasure in the days ahead.

It doesn’t have to be every moment of every day, but when you can, take some time to think about what it is that makes you happy, what you would enjoy doing or something new you’ve wanted to try. We’ve again stepped into a new year where people can start things fresh and reflect on their wants and needs. So why not start these new beginnings by doing something that makes you happy?

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