My Journey with MS Injections and Others’ Perceptions

Anna_webber_2

Sometimes like this weekend, for example, things will get to me. I attended a wedding weekend in paradise, bikini-clad in the Florida Keys, spending time with really great people, many of whom I’m meeting for the first time. And moreover, they’re meeting me for the first time. I was the best man’s date; his younger brother was getting married. I love social environments and enjoy meeting new people, especially those close to the people I love.

I was diagnosed at 23 years old. Beginning then, I decided it was all I could do to keep my life and my health in control where I could. I value keeping up on my treatment, staying healthy, and taking the disease seriously. It puts me at ease knowing I am actively doing all I can, and I’m proud of that. After locking down the “controllable” details (regimenting injections, exercise, diet, keeping up with friends and relationships, living in a positive environment, and embracing happiness), I’m freed up then to make the best choices possible when confronted with “life.” In this way, I am generally relaxed and comfortable in my own skin, navigating situations with conscious control and attention. When I’m walking around with injection site spots at a beautiful beach resort, that’s a time it’s a little easier to forget to be sensitive to the topic.

I’ve been able to stay healthy without experiencing too many symptoms too often. So for an otherwise healthy 27 year-old girl, it’s the (we’ll call them) “little things” that I’ll forget about. And truthfully, to me it seems those things can affect everyone else before they affect me. I attribute it to fear of the unknown. “Anna, you are SO sunburned on the top of your leg and on your hips! How does that even happen? Or is that a bruise? Hey, is your man beating you!?” (Referring to the best man.) Bless his heart…

Living with MS and injection site reactions and red welts, those marks and bruises from the shots that slow down the disease, I’ll forget about them unless they hurt or become somehow more inflamed. My boyfriend is mostly used to them, but I know it makes him sad that they’re even there at all; it’s just another reminder of the MS. When people see bruises in weird places, they’ll assume the man you’re with is probably the one beating you… You notice those looks and darting eyes. We talk about it and how he feels, and sometimes if I do something clumsy or forgetful, he’ll think, “Is that the MS?” and then he’ll go, “Do I have MS?” (Referring to himself.) Adorable.

Bottom line is, I don’t worry about people feeling awkward when I tell them that I have MS, I’m not embarrassed, and I’ll talk about it to anyone who’s curious. Once the unknown becomes understood, nothing’s a big deal, and in some strange way, it can make the connection deeper and easier. The whole thing seems to make me a more compassionate and happier person. The reactions when I tell a concerned party not to worry, are something between a quizzical look and concern, so then I’ll go on, “I have MS.” And then the, “Oh I’m so sorry,” etc. I guess why it gets to me, really, is because I feel like some people are condescending, or something even more cavalier. I’m doing everything I can do to control what I can and be the healthiest I can be, but those red spots are a blessing, and I’ve grown to learn to see them that way.

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

MSAA is very proud to present our 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 MSAA Art Showcase submissions.

February 2014 Artist of the Month:
Lucinda Mierek – Anderson, SC

 Pretty Petals and Peaches by Lucinda Mierek

“My art has changed because of my fatigue and loss of concentration. My images used to be tight and are now loose. The content was edgier and is now more mainstream. However, my color use is getting better possibly because I’m losing my vision and am trying to compensate. I need more energy to do my art and haven’t figured out how to get it.

Even with my problems I feel fortunate. I still walk, drive, and tend to my yard.

My daughter and I still enjoy our time together. She pushes me to do more art. She seems to be my biggest fan!

‘Pretty Petals and Peaches’ is acrylic on matte board. It is very loose in comparison to the detailed older work of mine. I like the color usage of my “MS era.” I have learned to take life a little less intensely and use color more intensely. My work has changed for the better.”

Read more

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

MSAA’s Next Art Showcase for 2014

Thank you to all of the artists who were part of last year’s Art Showcase for artists with multiple sclerosis. The wonderful artwork and personal stories have been inspirational to many who have visited our online gallery and who have sent and received online art cards, celebrating the lives and talents of people living with MS.

MSAA will soon debut the 2014 Art Showcase in March as part of MS Awareness Month. So, get ready for some new artwork and stories to enjoy! As before, each month we will share with you an Artist of the Month with a new online card that you can send to friends and family to spread awareness of MS, while showcasing the wonderful talents displayed by artists with MS.

You still have time for one more look at last year’s collection! Then, get ready to enjoy the many new works to be featured in MSAA’s 2014 Art Showcase.

Check out the complete MSAA Art Showcase online gallery of artists with MS.

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

MSAA is very proud to present our 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 MSAA Art Showcase submissions.

January 2014 Artist of the Month:
Michelle Hotchkiss – Palmer, AK

 Midst of Winter by Michelle Hotchkiss - send this Artist Card

“My name is Michelle Hotchkiss. I live on a small farm in a small town in Alaska with my husband, a very large dog and my dog-tolerant cat. I have two wonderful adult children and two of the cutest grandchildren ever born.

I finally had a diagnosis of MS in 1994 after years of odd symptoms. In 1994, I had a serious and scary attack which resulted in diagnosis of MS within days. It took a while, but I fortunately recovered and was able to return to work and lead a very active and outdoorsy lifestyle.”

Read more

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

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Holiday Hustle and Bustle: Tips for People Living with Multiple Sclerosis

The holiday season is upon us! As Halloween has come and gone, we find ourselves faced with the upcoming months of holiday preparations. Cooking, baking, shopping, wrapping, and family visits are just some of the tasks individuals embark upon during this busy time. Because the holidays can be a bit hectic, it’s helpful to make preparations and plans to combat the chaos that can ensue during this festive time. To make time for activities you enjoy and to reduce the stress and anxiety we all know can occur during the holidays, here are some ways to make the holiday celebrations more manageable:

  • Prioritize your tasks. Make a list of things you would like to accomplish, and order them in a way so that important things get done first.
  • Take breaks. The holidays can be both mentally and physically stressful on the body. Be sure to sit and relax in between tasks, even if just for a few moments.
  • Think “Potluck!” If you’re hosting the holidays at your residence, have guests bring something. They can bring their favorite dish or dessert to help contribute.
  • Ask for help. You can ask family members/friends to go shopping, clean, or help with food preparations for the holiday meal to lessen your work load.
  • Prepare in advance. Some meal preparations can be done ahead of time for a holiday gathering. The week of the holiday, spread out tasks that can be completed beforehand so that on the day of there’s less to do.
  • Relax and Enjoy! Even though the holidays can be stressful, be sure to take time out to enjoy the festivities and spend quality time with those you care for!

Tips for Dealing with the Holidays When You're Living With MS

What are some ways you prepare for the holidays?

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Making Commitments When You Have Multiple Sclerosis

Before I got diagnosed with MS, I would make plans, mark off the ‘Attending’ box on RSVP’s that I received,and I could also just up and do something if there were plans made abruptly, without a second thought.

That’s not the case anymore; I can tell you that much. And I have a feeling I’m not alone on this…

Now, I’m not saying that since I got diagnosed with MS that I don’t want to attend certain events or go out with friends, etc. I still want to do those things; there are just different circumstances now.

I really hate cancelling plans that have been made or not attending something, (like a wedding) that I had replied I would be attending, but my MS isn’t on a “regular schedule.” I can’t tell people, “Well, on Monday, Thursday & Sunday my MS is not cooperative, so I can only do things on Friday & Saturday.” If only it were that easy, right?

So the reasons I don’t like making commitments to plans are because I don’t know how I’m going to be feeling on that day… or at that particular ‘part’ of the day. I know it seems as if I’m “blowing people off,” but that’s not the case. If I said I wanted to attend something, it means I really did. My MS is just not “allowing” me… Kind of like it’s grounding me, like my mom did to me when I was younger.

So now, when people invite me to do something that evening… or the upcoming weekend, I tell them… “I really want to! But I don’t want to make any promises, so let’s see how I’m feeling when the time comes.” For those people who are close to me, they understand my reasoning for saying this… others don’t, and I have to explain, which can be difficult with people who don’t have MS, or who do not have a lot of knowledge of the illness.

My main message on this blog… “Yes, I want to do things…. But sometimes my MS has other ideas that I can’t control!”

 

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Life with MS and Cognitive Issues: You Never Know What to Expect

By Jeri Burtchell

Ever since telling my family and friends I’d be writing a blog post for MSAA on the topic of cognition, they have been ribbing me. The irony of the most absentminded person they know writing about memory loss is too amusing to ignore.

All kidding aside, cognitive issues can be a serious and bewildering symptom of MS. One that can creep up stealthily and impact every area of your life–and it’s more common than you might think.

My reputation for forgetfulness goes back a long way, predating my diagnosis of Relapsing-remitting MS in 1999. I’ve had memory problems for as far back as I can recall.  However, how far back I can recall is debatable.

I start each day with my cognitive cup full. In the stillness of a quiet house at 5 a.m., I approach life hopeful for a day filled with accomplishments. Morning is when I do my best thinking. But I know what’s coming and I prepare in advance.

As surely as the sun crosses the sky, I’ll begin my descent into a foggy, cognitive swamp by midafternoon.  Having a plan that helps me get through the day without being overcome by frustration is kind of like having a little set of crutches for my brain.

A huge dry erase board serves as my calendar. Using multicolored Post-it Notes, I translate my life’s chores, celebrations and obligations into a color-coded explosion of reminders. When a fleeting thought of something important lands briefly on my conscious mind, I grab it and quickly trap it in a sticky note. The important thought is added to my calendar, displayed like a butterfly on a pin board.

Green Post-it Notes are work-related and sprinkled all over the board. Yellow is for appointments and domestic duties; pink reminds me to pay the bills. Orange is for anything related to the kids, who have so many extracurricular activities that even a fully functioning brain would have trouble keeping up.

Although it all sounds good on paper, in reality, I’m grasping at straws. I frequently find myself herding well-intentioned sticky reminders from left to right in a multicolored cattle drive across the calendar as accomplishments go unfinished.

So why does this happen when I’m determined to plan out my day? Well, because of websites like Facebook and Pinterest. Or it could be as simple as someone asking me a question that leads my brain astray.

“Jeri, do you know where the phone book is?” my mother asks.

“No, Mom, let me look around.” I reply.

Fifteen minutes later, the Great Phone Book Hunt has yielded nothing, I end up Googling the number for her instead, and whatever task I was working on has slipped to the bottom of the cognitive swamp, totally forgotten.

Thankfully, even though my family members tease me, they are my safety net as well. Intuitively, everyone seems to have found their own way to help me stay on track.

My mother, who will be ninety next month, is an expert in the art of the gentle reminder. She keeps her own lists of what I should be doing and gives me a subtle nudge if she sees my memory falter. She does it with such finesse that a politician would be impressed.

The kids and grandkids know that telling me something important once is not enough. I need daily phone calls, texts, or emails to refresh my memory about picking them up at school or taking them to practice.

Although nobody gets angry when I come home from the grocery store without the bread or milk, there might be some exasperated eye-rolling when I explain that I forgot to even look at the list.

I once had to mail a package with only fifteen minutes to spare. I jumped in the car and raced straight there only to get out of the car and look around puzzled. I wasn’t at the post office. I was at the grocery store on the other side of town. Daydreaming about what to fix for dinner had apparently determined my route. Rather than obsess about how I could possibly have done that, I decided to make the best of things. I went grocery shopping.

Living with cognitive symptoms of MS can be challenging. It takes planning and teamwork to pull off a day that, for anyone else, would seem routine and uneventful. Failing at that now and then can be frustrating, but I try to keep things in perspective. As long as I haven’t forgotten to feed my family or pick someone up who was waiting for a ride, then I can forgive myself the other slips.

Living with cognitive problems isn’t all bad – in fact, there is an upside. I can read a good book several times and the ending still surprises me. I forget arguments as soon as they are over, so forgiving takes no effort. I could probably plan my own surprise party!

And even though my family might rib me about my memory from time to time, the simple act of everyone doing their part to help out seems to have brought us all closer together. I’ll have to jot a reminder to thank them for that – if I can remember where I put my Post-it Notes.

*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.

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Stay on the Tracks….

Many of us have taken different modes of transportation throughout our lives. Some of these modes have included various types of trains, trolleys, and subway cars,
all of which have one common purpose: to remain on the tracks provided to get to the desired destination safely. This may be an easier task for these transportation vehicles than trying to stay on track during everyday life. Keeping things organized and staying on course can be difficult with life’s unpredictable moments and events. This can be especially true when dealing with an illness like MS, a disease that proves unpredictable itself. So how does one try to stick to the tracks when life comes by and occasionally swipes you off course?

Here are some ideas on how to stay on track while dealing with life’s roadblocks:

  • Make lists! Prioritize your responsibilities and tasks so that you can make adjustments if something throws off the day’s expected course.
  • Write notes or use a tape recorder for the day. This can help you organize and remember things to be done. This can be especially helpful if something else comes up unexpectedly, you have the notes to remind you what needed to be done!
  • Reach out for resources and support. There may be ways to receive help to keep things in order for your routine. Asking others for help or making sure someone else is aware of your anticipated tasks/goals can aid in keeping things on track.

What are some things you do to try and stay on track?
 

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The American Way of Life for Women (aka spouse, mother, employee, daughter, sister, caregiver, advocate)

By Cindy Richman

Don’t you all agree something’s gotta give? In the twenty-first century I really had high hopes for my daughters’ and son’s futures. I anticipated serious discussion and change around work/life balance issues. Instead we have one disaster after another at home or abroad, and ultimately the entire US government is shut down! No time is spent on how we particularly as women go about improving the business of living our everyday lives.

If you are like me, you live like someone is chasing you trying to get everything done on time and fulfill the many roles you play from a mother, to an employee, to a caregiver. Expectations can be unpredictable and change may come in a moment’s notice. Your child has 102 fever and you need to get to the school ASAP. You worked late and the dinner you planned will take too long to cook and everyone is already starving. You have MS and you promised your son you would go watch his game, but you worked all day and have to work again tomorrow and you feel like you can’t take one more step.

“So what’s the solution?”, you ask? The solution is different for everyone, of course. The solution is particularly challenging when you are living with MS or loving and caring for someone who has MS. Living life in America today without a diagnosis or even a short term illness is really over-the-top to begin with and then adding MS into the mix is really signing on to be superwoman! One of the simple things I think we can all do right away is to try and take just a little bit of time for ourselves.

Beware, you will really have to make a thoughtful effort to do this because many women put everyone else’s needs first and completely forget about what they need. Even if the time is only 20 minutes or less to start, just begin practicing getting back in touch with yourself and being present in the moment. It could be as simple as appreciating the scent in a garden or reading a few lines of a poem that speaks to you before you hear the sound of someone’s voice demanding the next thing on the to-do list. The unpredictable life continues…

*Cindy Richman is the Senior Director of Patient and Healthcare Relations for MSAA

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Follow the Yellow Brick Road: Planning Ahead When You Have MS

Have you seen the car commercial recently where someone says something along the lines of, “we have to do something about this car”, and the little yellow line pops up and guides them to where they need to be? Wouldn’t that be wonderful, if for every problem in life that we encountered, a little yellow line helped guide us to the right choice?

Although there are no yellow brick roads guiding our way, we do have a chance to prepare ourselves for our future. I have always held true the saying, “hope for the best, plan for the worst.” Although I may be called a cynic for thinking this way, I always feel it is best to have a plan in case things don’t work out the way they were expected.

For individuals faced with a chronic illness such as MS, keeping on track and following the plan are two very important steps. From the very first doctor’s appointment a plan is created; what medications to take, what testing to have completed. It becomes part of a routine. But what happens when that plan falls apart? Maybe you need to switch medications, or you are unable to continue working. You may find yourself asking, “now what’s the plan?”

Having the next step in mind is a way to try and avoid the panic that may set in when life throws you a curve ball. To help keep on track with your MS, it is important to work with your doctor not just about the present MS challenges, but also consider planning for the future. Creating a plan about who to call and what to do if you feel as though you are having a relapse may make the experience feel a little more in your control.

Also, having discussions with family regarding long term plans and making small changes that may assist down the road can lead to less confusion and uncertainty in the future. Perhaps you’ve thought about moving to a more centralized location with more resources, or downsizing to a smaller more accessible home. For some people, these are important considerations for their future plan. What plans have you created or thought of for yourself? Looking back at your life, do you see any areas where you wish you had made a plan?

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Preparing for the Change of Seasons

By Matt Cavallo

Many of us living with Multiple Sclerosis welcome the change of seasons. Gone are the dog days of summer and the pseudo-exacerbations (brief flare-up) associated with heat. While the heat is no longer a factor, the change of seasons can present other challenges to those of us living with MS. In a speech to the University of Lille (7 December 1854), Louis Pasteur said one of my favorite quotes, “Chance favors the prepared mind.” The following self-management techniques will help you prepare for the challenges that the change of season present for those of us living with MS:

Self-Management Tips for Change of Season Issues

1. Eating healthy: Fall and Winter are associated with a lot of festive eating. Halloween candy, Thanksgiving dinner and all the holiday parties, provide lots of yummy food and treats but also provide many opportunities for us to overeat. Some ways to keep your diet in check:

  • Eat three meals a day. Breakfast is the most important meal of the day. Skipping breakfast may lead to overeating later.
  • Eat smaller, more frequent meals to keep your energy up.
  • Avoid large portions and desserts that can increase fatigue.
  • Keep a food diary and write down everything you are eating to stay on track and keep you accountable for healthy choices.
  • Drink plenty of water.  Dehydration can be confused with hunger.

2.  Preventing falls: Rain and snow in fall and winter can lead to an increased risk of falls.

  • Safeguard your entrance and exits with mats to absorb moisture.
  • Wear appropriate shoes with proper treads to provide more grip on slippery floors and sidewalks.
  • Stock up on the supplies you need to weather any storm that hits, so that you don’t have to run out during a storm.

3. Exercise: Cooler months can mean less opportunities for outdoor activities, leaving some less active.

  • Find ways to fit in exercise despite the weather.
  • Work out indoors at a local gym or in your own living room with exercise DVDs.
  • Many local gyms, like the YMCA, have indoor pools. Aquatic exercise is good for those with limited mobility.
  • You can also use swimming to raise awareness for MS through the MSAA’s Swim for MS program.
  • Mall walking is a good way to get in exercise on a rainy day.
  • The key is to keep moving!

4. Managing stress: Fall and winter months can increase stress from increased holiday parties, financial expenses and family obligations.

  • Don’t overextend yourself.
  • Set a realistic plan for what you can commit to and stick to it.
  • Take time for yourself to relax and decompress.
  • Exercise and eating healthy will play a vital role in helping to keep your stress levels at a minimum.

Each season can bring a unique set of challenges for persons with disabilities, but preparation and knowledge of self-management skills will help you anticipate and overcome those challenges to enjoy the best of what the season has to offer.

*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

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