Some invaluable lessons (from some unlikely sources)

Posted on December 11, 2015 by Angel Blair

It’s that time of year when the holidays are upon us in full force. With the celebrations of Hanukkah starting last week and the arrival of Christmas and Kwanzaa in a bit under two weeks, the season is in full swing. It’s during this time of the year when many people find themselves taking moments to reflect on the year and what they found important, meaningful, challenging or inspiring. Certain experiences, teachings and life lessons are frequently pondered during the holiday season as people recount what they’re grateful for, things they’d like to learn, and notions they are still trying to grapple with. It’s funny to admit but during this time of year especially there are some very invaluable lessons that can be considered and reflected upon from influences around us. Granted most of these influences may be in the form of animated figures and storytellers, but their lessons are still valid and appreciated as guideposts of direction and conscience.

Take for example the beloved, though mostly outcast, Charlie Brown Peanuts character. Even though his actions of choosing an at first glance unattractive looking Christmas tree to use as a prop for his friend’s Christmas play were ridiculed and contested, in the end it gave way to a most memorable and impactful speech explaining the true meaning of the holiday and what ‘Christmas is all about.’

Lesson: It’s the meaning of the season and why it’s celebrated that matters most, not material items or commercialism.

Another recognizable figure during this time is Dr. Seuss’ the Grinch character. Now he had the most learning to do of all – with his heart two sizes too small. Again he thought the season was just about material possessions and how much the Who’s had. It angered him to see how they reveled in the holiday celebration and thought that by taking away their belongings this would dampen their spirit. But the Who’s blatant joy and celebration despite their loss taught the Grinch more, of course, that ‘perhaps Christmas doesn’t come from a store.’

Lesson: The holidays are a time for appreciating who and what you have in your life that brings you happiness and realizing what you’re grateful for, and being together, even perhaps singing a little ‘Fahoo-dores.’

And lastly, perhaps one of the most influential, historical characters during this time of year? Why yes, it’s Mr. Ebenezer Scrooge himself, the feisty curmudgeon who could really suck the spirit out of the holiday season – if you let him. Scrooge’s memorable and extraordinary tale of being visited by three spirits on Christmas Eve really captures multiple lessons of the season. By redeeming himself and changing his ways by the end of the tale, which we can only hope continued even after the story ended, he was able to ‘keep the spirit of Christmas close to his heart’ and celebrate all year through.

Lessons: Think and consider those who are less fortunate than you, and when able, spread prosperity (in any form) to others. Think about your actions – they can affect others too, not just yourself. Gratitude and appreciation can go a long way. Keep the meaning and spirit of the holidays close to you always.

Now not everyone may recognize or know these characters mentioned above, but the message remains the same. No matter what time of year, you deserve to think about what’s important to you, what you enjoy, and how these things influence your day to day. Values and lessons are important to consider—not only during the holiday season, but the whole year through.

One of the best things you can do for yourself…is be quiet

Posted on December 9, 2015 by Ro Washington

We spend so much of our time doing this and running there with music and podcasts, directions and instructions, jingles and audiobooks, theme songs and storylines. Our world is pretty loud and I’m as guilty as the next person. I put in my ear buds as soon as I step outside the door. Turn on something when I come home and have a constant barrage of stuff running through my head. The holidays only make it that much more apparent. There’s socializing and classic tunes, conversations of what to get the kids, where to go for the best deals and whose home you’re having dinner. Commercials run back to back from everywhere asking you to buy this or try that.

We’re inundated with sound.But from time to time we just have to stop. Put down the phone, step away from the TV, and power down the laptop. Ask the family for a few minutes and turn it off. Taking some time for silence and sitting, walking or laying in quiet, and just “being” is one of the hardest things to do. Just think about when you try to go to bed, the entire day wants to run a recap in your head as you struggle to find some quiet corner in your sub-consciousness to conk out in. I know it can be hard, but it’s worth the effort.

Take some time to really quiet the world around you and just be. Now I’m not so naïve as to think that while you intend to sit in silence your brain won’t sneak in with the to-do list or the last song you heard on the radio won’t rear it’s head wanting to say Hi, introduce itself and ask you if enough time has passed for you two to meet up (yep, I heart Adele too). But make some time to take a deep breath and exhale the catchy lyrics and never ending schedule for even a few minutes.

Silence, I’ve found, can be scary, we’re so used to the clamor that we aren’t sure what will happen when it’s gone. What will happen you ask?? I can’t answer you for sure but what I can say is that when I have intentionally sought out some quiet I’m able to feel my heart beat, hear myself slow down my breathing, relax my muscles into the lack of filled-in sound, and center myself. keep-calm-this-is-a-quiet-zone-8

Grab a cup of coffee or tea and settle on your couch, sit in a chair, close your eyes and breathe. You can even head outside and just quiet your mind and get some fresh (albeit possibly cold) air. During this holiday season I encourage you to take some time, even if it’s just 5 minutes, and be quiet in the silence. You may find you’re better able to tackle the wall of stuff you have to get done with some help from that few minutes you spent just sitting on the back porch.

Gifts From The Heart

Posted on December 7, 2015 by Melissa Young

My husband loves a good deal. Seriously, he hates paying more than he has to for anything and loves telling everyone how much he saves. He’s in his glory this time of year, scouring the newspaper and internet for low, low prices. On Thanksgiving Day, as I was agonizing (OK, maybe a bit of an exaggeration) over dinner, my husband was checking his e-mail inbox and came across the following.

Yes, you read that correctly. Thanksgiving Day, a day to be grateful for all we have, is being swallowed up by the spending holiday of Black Friday. I even saw a few companies refer to the week as Black Friday Week! It’s crazy! The way we are going, in 20 or 30 years, we will have lost the original meaning of all of our holidays. All that will be left will be the sales and deals galore. Don’t laugh, it could happen!

With Christmas coming up, that got me thinking. Maybe we should embrace the saying that “It’s the thought that counts”; not the price tag. So, I’ve put together a list of gift ideas that show an added personal touch (and that don’t break the bank).

1. Bake cookies and send along the recipe for future use.
2. Make homemade holiday cards.
3. Give the gift of your time. For example, offer to babysit to give young parents a break.
4. Put together a book of “secret family recipes” and give it to all family members, young and old.
5. Use your talents (such as knitting) to create unique presents.
6. Craft gifts (like wreaths) out of recycled or repurposed materials.
7. Pass along a family heirloom to the next generation.
8. Regift; if you don’t think you’ll use something, give it to someone you know will.

Sometimes, the best gifts are the ones that come from the heart.

Wishing you a Happy and Healthy Holiday Season!!

December 2015 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on December 4, 2015 by John MSAA

MSAA is very proud to present our 2015 Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

December Artist of the Month:
Bob Donner – Winter Birches in the Snow

About the Artist:
“I have MS, but I don’t let that define me. In my wheelchair, it’s obvious that I’m physically challenged, but I’d much rather be known as the ‘artist’ in the wheelchair.

Shortly after my diagnosis, I was on my computer one day and, on a whim, drew a bear using my mouse as my ‘pencil.’ It was far from perfect, but resembled a bear well enough to capture my interest. I began steadily developing the skill, and now most of my day is spent at my computer, mouse in hand, creating images on the screen.

When away from home, I’m observing everything around me, wondering how I would draw it. I especially like the drama of sunrises and sunsets. Each one is a unique display lasting several hours. My advice: Watch as many as you can, with the wonder of a five year old, and the eyes of an ‘artist.'”

Be inspired – please send an online card featuring artwork by MS artist Bob Donner and spread awareness of MS and MSAA.

Time’s Running Out for Medicare Open Enrollment

Posted on December 2, 2015 by Samantha Schech

Not happy with your Medicare plan in 2015? There is still time to make a change! Individuals have through December 7th to make changes for the 2016 plan year. By now, the Annual Notice of Change (ANOC) letters regarding 2016 coverage have been sent; it is important to review those documents to see if any major changes will affect your healthcare in 2016. Not sure if you have received this letter? Contact Medicare at 1-800-633-4227.

If you are happy with your current coverage and are OK with the information provided within the Annual Notice of Change letter, then you do not have to proceed any further. You will automatically be enrolled in the same plan as 2015.

Concerned about your coverage, or would like to make a change to your plan? Visit the Medicare website to review your current policy. Through the site, you can check your level of coverage to see how much or how little your plan was utilized in 2015. Perhaps there are trends that you notice regarding out- of-pocket expenses that may be better covered under another plan.

2016 Medicare plans can be reviewed and compared online through the Medicare Plan Finder. Having issues online, or would like more one-on-one assistance; get free personalized health insurance counseling by calling your State Health Insurance Assistance Program (SHIP). Visit shiptacenter.org to locate the nearest center.

A little planning goes a long way…..a year to be exact. Taking the time now to review or make changes to your Medicare plan has the ability to effect all of 2016. So PLAN ahead!

You’re Hot and You’re Cold

Posted on November 30, 2015 by MultipleSclerosis.net

There’s no doubt that weather can have a marked affect on MS symptoms, but the question we posed to the MS community is: which season is worse for you? The community was evenly split between the two seasons-–for some, the summer heat can be unbearable, but for others, the bitter chill of winter is enough to make you research human hibernation.

See what they had to say and which faction you below to:

Baby It’s Cold Outside

Everything is sensitive
- Even a slight chill causes bone-shattering pain for me
- Even temps of 50° can leave my feet blistered with frostbite. My shoes in winter are 2 sizes bigger, just to accommodate extra socks.
- My skin feels like it’s covered in needles
Can’t control the spasms
- Cold causes major muscle spasms in my feet, legs and back!
- My legs hurt from muscle spasms and I’m even more clumsy because my hands are numb
- Cold makes me spasm more
My muscles are stiff and painful
- Just being outside for 10 minutes in the snow and I lock up like a mannequin in a window
- The cold kills my hips
- My cold body feels stiff and won’t move
- My legs are in constant pain in the winter

It’s Getting Hot in Here

Humidity is my kryptonite
- Humidity is like wearing cement boots
- When you add humidity to heat, I’m a dishrag – just done for the day
- Humidity is intolerable – like having an anchor tied around my waiste
Heat sucks the energy right out of me
- It’s a struggle to walk; I feel weak like I’m melting.
- It makes each foot feel like 200 pounds
- I have such a hard time walking; I call it drunk legs
- I wilt like a weed in the Sahara!
- Heat makes my muscles like wet noodles
I can’t think straight
- Heat shuts me down
- Heat causes my brain to just go flat, like I’m in a steam fog
- My brain just doesn’t work in the heat

Stuck in the Middle with You

Any extreme temperature is awful
- Extreme temperatures, either way, affect me very badly
- Heat makes me feel rubbery and the cold makes me walk like Frankenstein
- I hate extremes of both – heat makes me fatigued, cold makes me numb
I thought I hated one, now I hate the other
- I used to say that heat was my kryptonite. It still is, but now I find that any mildly extreme temperature whacks me out
- It used to be just heat but last year the cold was very hard too
- My MS hates the heat, but I hate the cold.

The general consensus amongst the community seemed to be that 65-70 degrees is the ideal temperature, so spring and autumn take preference. But how about you? Which camp do you fall in—hater of heat or contempt for cold? With the colder months approaching, here are some tips to ensure you’re prepared for the impending weather!

Giving Thanks

Posted on November 25, 2015 by Angel Blair

This week many individuals around the country will celebrate Thanksgiving, a national holiday symbolizing the notions of graciousness and appreciation. This holiday and others represent different things to different people and hold varied meanings for all who celebrate them. But a concept that can be universal and celebrated all year through is that of gratitude. Finding what you’re thankful for, no matter how big or small or different, is a part of this holiday tradition. Expressing your gratitude can help pay it forward and inspire others to do the same, and to hopefully further inspire acts of appreciation and kindness across our society. Celebrating the holiday can simply mean appreciating and reflecting on the words themselves-‘Thanks’ and ‘Giving.’

Please note that MSAA’s offices are closed for the Thanksgiving holiday on Thursday, November 26th and Friday, November 27th.

From all of us here at MSAA, please enjoy a safe and happy Thanksgiving!

Responding To Comments That I Need To… (Fill In the Blank Here)

Posted on November 23, 2015 by MSAA

By: Stacie Prada

It personally bothers me when I read online articles telling people “What every person needs to do…”and presenting it as fact. They don’t know me, and what may work for the masses may not be appropriate for me.

A simple example of this is kale. Kale is very nutritious, has a lot of health benefits, and I feel good when I eat it. People with hypothyroidism or taking blood thinners need to avoid kale. What’s good for many people is not good for every individual.

It’s common for me to explain to people suggesting I take immune boosting products why I don’t. People think that because they’re successful avoiding or recovering from colds by taking immune boosting products that I should take them too. I’ll nicely explain that I take a disease modifying drug to suppress my immune system because it works too well. While I want to maximize my health, intentionally trying to trigger my immune system to start fighting isn’t good for me. I also explain that eating foods with anti-inflammatory properties does work well for me. We’re all different.

So while it bothers me to have someone tell me they have the answer to my problems, I respond to it the same way as if they’ve just made a suggestion. I’ll honestly let them know whether I’ve already tried it, I’m doing it now, I’ve tried it and it didn’t work for me, or that I’ll look into it. I have a mental list of things I want to try but am not ready to do yet. Some of them like doing yoga and seeing a naturopath took me years before I was ready to try them. When I did, they were a huge benefit to me and I wished I’d tried them sooner. I followed up with the person who’d made a suggestion and thanked her. I let her know I’d finally done it and loved it.

Response Tool Box: I like to think of communication as a toolbox with tools that we use regularly and others that don’t come as naturally. Sometimes we use our standard tool and it works great. Other times it takes three or four tries with different tools before we convey our message. I’ve found that the following methods have worked in response to comments that make me uncomfortable, that seem hurtful, or that I’m not up for answering in the moment:

The blow off: If a comment is too ridiculous or mean and you don’t want to address it at all: pretend you didn’t hear it. Focus on something or someone else and continue the conversation.
Incredulous silence: If you want them to know it was inappropriate or hurtful, a paused look of shock can work. And move on to something else.
Honesty: Say their comment is hurtful or too personal for your comfort level and you’d rather not discuss it. And move on to another topic.
The improvisational approach: Consider the comment as valid, build on it to the ridiculous and humorous conclusion, and laugh it off. It works best if your response really is funny and doesn’t embarrass the person who made the initial comment.
Find an advocate: Turn to a friendly face in the group and ask what they think about the topic through eye contact or explicit words.
Connect: Find the kernel of accuracy in what they’re saying, and comment on how that is true before explaining more about your experience.
Insight: Someone has said something completely foreign to anything you’ve thought before. Say that’s interesting and you’re going to think about it.
The delayed response: Sometimes a comment sticks in my head long after the conversation is done. I allow myself permission to bring it up later after I’ve thought about it. There’s no time limit to letting someone know that something they said made an impression on you.
Reschedule: If my energy is low or the event isn’t really conducive for the conversation and I really would like to discuss it another time, I’ll tell them.
Defer: There is a lot of information on the web about this topic, and I’m still learning all the time. I know some terrific websites and articles that can explain it much better than I can. If you’re interested in them, I’m happy to send them to you.
Question: See if you understand their questions accurately. Ask them if your understanding of their question is correct. Ask them to tell you more about why they’re asking. Sometimes people ask leading questions because they want to tell you something. Let them.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

Talking About MS

Posted on November 20, 2015 by MSAA

By: Stacie Prada

Over the years, it’s gotten easier and easier for me to talk about my MS and respond to questions and comments. When I was newly diagnosed and didn’t understand how MS affects my body, I felt a little anxious when people would bring up the subject expecting me to have all the answers. And sometimes I was just too fatigued to have the energy for thoughtful discussion.

I went from knowing nothing about MS to being an expert in how MS affects me. It took a lot of time and effort, and it’s helped me to manage my health better and be able to respond to questions and comments. Now I think of MS conversations as more of an opportunity to connect than a list of pat responses.

Lose the guilt: I think a lot of my anxiety in these early conversations was due to me not wanting to accept that MS will affect my life. I wanted my will to override the physical restrictions MS was placing on me. It took time for me to fully accept that I can’t control or outsmart my body and do everything I used to do or want to do. While I was holding on to the feeling of inadequacy, I couldn’t discuss my MS without feeling a little shame or guilt. And that mindset makes every conversation uncomfortable for all parties. Accepting I can control some things and not others allows me to talk about my MS with confidence. MS is not a character flaw; it’s a medical fact about how my body functions.

Assess the situation: Think about the event and make a goal. Is it to get through the occasion? Is it to have fun and avoid drama? Is it to connect with certain people and have long, meaningful conversations? Each situation will lend itself to a different response.

Determine their motive: Why are they saying what they’re saying? Are they trying to be mean and judgmental? Or are they seeking assurance that you’re okay and they don’t need to worry about you? There’s a difference. A person genuinely trying to help deserves compassionate response. On the other hand, a miserable person that enjoys drama and putting people down is always going to win at their game. They’re too good at it. They’re not reading articles about how to get better at dealing with people they want to make feel bad. If you don’t feel comfortable talking to these people, avoid them if you can. Solicit someone to be with you that can help you cope, by either sticking up for you or diverting the conversation. Lashing out or trying to make the person feel hurt like you feel won’t help in the long run.

Consider the source: Is the challenge how that person interacts with you, or is it the topic that worries you? There’s a big difference. People that are consistently aggressive or love to put you down because they’re “just kidding” can be dealt with differently than people that are trying to be helpful but are pressing your buttons.

I try to remember if I’ve ever had a good interaction with this person and what made it good. It sometimes gives me some ideas for how to deal with future conversations. It’s also helpful to consider how informed this person is. Even if they know a lot about MS, I know they don’t know my body or experience as well as I do.

Know yourself: When we’re at the top of our game, we might be able to roll with an insensitive comment easier than when we’re tired, feeling overwhelmed, and experiencing MS symptoms. We all have certain things that make us uncomfortable. Knowing and accepting my triggers allows me to get through situations better.

Stay true to yourself. Be you. Be the person you like being. The interactions I’ve regretted have been the ones where I felt baited to respond in a way that doesn’t align with my core. Don’t let another person’s comment dictate your mood or change how you feel about yourself. This can be tough when you’re feeling low or frustrated that you even have to deal with MS at all. The guidelines I aspire to may be different than yours, but I’ll include them here as an example:

Be genuine and sincere. Coming from a place of anger allows them to diminish your feelings with justification. Coming from a place of curiosity and connection may not always succeed, but at least you can feel good about how you behaved in a stressful situation.
Be funny. Be willing to laugh at your situation if you’re able, whether they’ve made the joke or you have.
Lead by example. You teach people how to treat you by how you react and how you treat them.
If you blow up, make amends when you can, and forgive yourself.
Remember it’s a conversation and not a pop quiz or Q&A. The focus doesn’t have to stay on you. You don’t owe anyone a response to a question that makes you uncomfortable.
Remember you don’t have to be perfect, and neither does anyone else.

Invite Connection: Some people are worried about saying the wrong thing, and they may need you to give them permission to talk about your MS. When someone like this asks how you are, answer them honestly. And simply tell them that you’re happy to answer any questions they have. It lessens their anxiety and invites conversation. It also reduces the burden on you to figure out what they want to know.

Ask them what their experience with MS is. Have they known people with MS? What’s their knowledge about it? I didn’t know anything about MS when I was diagnosed, and I knew of one person socially that had MS. I’d seen her once with a walker and visibly struggling, and a year later saw her looking fine. Given my extremely limited knowledge of MS before I was diagnosed, I can relate to people that have no concept of MS or other chronic illnesses.

I’m glad when people have an interest in learning more, and I want to encourage them. Being a safe person to ask questions builds compassion and empathy on both our parts. I’ve learned a lot and come to a greater understanding about myself and others through these MS conversations. Even better, I’ve received a lot of support, felt good about myself, and enjoyed a LOT of laughs.

Stay tuned for part 2 to read about tips for responding to questions.

Unwanted Advice During the Holidays: How to Cope?

Posted on November 18, 2015 by MSAA

By: Meagan Freeman

During the holidays, we may find ourselves in the idyllic, peaceful scenes depicted in a Norman Rockwell painting. Surrounded by loving family and friends, sipping hot beverages and laughing by a crackling fire. Along with those scenes, we often partake in traditional meals, full of wonderful foods and desserts. The downside of this beautiful family tradition might be the hazards of incredibly high calorie, high fat, high sodium foods that may take a toll on those with multiple sclerosis.

For the past 6 months, I have made tremendous changes in my own diet. I have made fruits and vegetables the focus of my diet, along with low fat, low sodium options. I have worked very hard on maintaining this way of eating, and in general, have been supported by my family and friends in this process. In a few short months, I saw dramatic reductions in my blood pressure (I have hypertension in addition to MS,) and I have also seen large reductions in my cholesterol. In combination with my medication, I have reduced the severity of my MS symptoms through this lifestyle.

Why do the Holidays seem to completely derail healthy lifestyle choices? I have already begun to hear comments from family, such as: Why don’t you just take a break from the diet? Why don’t you skip a few days? What is the big deal? Why are you being so extreme? It is amazing how quickly “tradition” becomes the priority at holiday meals, rather than health. I am a believer in the concept that healthy meals can also be incredibly tasty.

In addition to these dietary comments, we may also find ourselves being showered with the ever-present “helpful advice” from family members about how to best manage our MS. “Have you tried———?” I happen to be a licensed family nurse practitioner, and even with my medical background, I have family and friends who ask me this very question constantly. They send me articles about new research, suggest different alternative and traditional therapies, and question my treatment decisions with regularity. Sometimes I feel a twinge of anger, and I have to hold back an emotional response. Instead, I find the response, “Thank you for letting me know about that, I will look into it,” to be the best.

Sticking to our choices while being gracious recipients of unwanted advice can be especially trying during the holidays. The most important thing to keep in mind is that we are loved and surrounded by people who only want the best for us. This is important to remember when you find yourself at the Thanksgiving dinner table receiving your 50th comment about the food (or lack of) on your plate!

Happy Holidays!

*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.

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