Enjoying the Holiday Season When Health is an Issue

Posted on December 4, 2017 by MSAA

By Stacie Prada

There are reasons to stress all year long, but the added social events and holiday tasks in November and December consistently encourage us to overdo it. People expect things from us, and we put expectations on ourselves.

Sometimes – or a lot of times – “just” getting to work, paying bills, keeping house, caring for others, and maintaining some modicum of basic health is an overwhelming goal. Add the holiday season expectations, and those of us with MS can be vulnerable to increased symptoms.

I firmly believe that these suggestions are good for anyone, those in perfect health and those with chronic illnesses. It’s just that what may be optional for them is critical for us.

Establish the minimum: Decide what the absolute minimum is that you need to do to maintain your health and be happy this season. Not being able to do everything we want to do is a daily harsh reality with MS, but being strategic about how we spend our time and energy can help alleviate the discouragement.

For holiday tasks, be very clear on what is needed and what is preferred. Anything beyond what is necessary is a choice, not an obligation. Sometimes just a shift in thinking can change how I feel from resentment to joy. If I’m doing something expected and I’m coming from a place of resentment, I will suffer. When I’m gifting, I’ve decided this is something I’ve chosen to do and I’ll feel good doing it. When it’s appreciated, it’s only an added bonus.

Reduce the demands: Ask yourself the following:

How can I do this so that it lessens my burden?
Can someone help?
Does it need to be done at all?
Can it be done at a different level of effort?
Can I purchase it without compromising my finances?

When someone asks me to do something, I’ll ask them the questions above. I’ll ask myself: Would I enjoy it, and can I do it without overloading myself? If I’ll resent it, I better adjust my attitude or not do it.

Organize and plan ahead: Don’t expect to remember everything without any extra effort. I keep a list of holiday season tasks that I want to make sure I do each year. It includes things I’ve done in the past, mailing due dates for cards and packages, gifts given, gifts received, thank you notes sent, and events attended.

If possible, I’ll proactively schedule time off from work to do holiday tasks. Trying to accomplish them all during evenings and weekends often doesn’t allow enough rest for maintaining health.

Make room for joy: Connect with loved ones in person, or by phone, text or letter. For many years I’ve alternated between Christmas cards sent in December and New Year’s cards sent in January depending on how much I had to do that season. Some years I didn’t send cards at all.

Include time to recharge in ways you love that feed your soul. I love getting outside and moving my body. It’s important to not just set sights on getting through the holiday season. Experiencing joy along the way is crucial for my sanity, and I will not do without just because I have a chronic illness.

Adjust to changing plans: I’d forecasted the things I would do this holiday season to match a level that I thought could accommodate my MS fatigue. Then my career placed demands on me I hadn’t anticipated. Sure, I whined about the surprise demands before verbalizing that it’s my choice to participate. The truth is I want to do these events; it’s only the scheduling that frustrated me given it challenges me with fatigue. To adjust, I found time on the work schedule where I could come in late or take some time off to offset the longer days. I also talked to a couple people who scheduled the events and asked them to consider spacing them out if done again in the future.

Receive judgement with compassion: People will judge the choices you make. Understanding that we can no longer do everything we’ve always done is hard to take for those that know and love us. Sometimes it’s not about the task, it’s about them wishing our health will be okay. It’s hard for us, but it’s also hard for them to accept that we have a serious illness that affects every aspect of our lives. Other times due to the invisible symptoms we experience and successfully accommodate, they forget we have limitations. It’s up to us to share our limitations when they affect others. No one who cares about us really wants our health compromised because of them. Usually they don’t understand that the little things could be a tipping point for us that requires a long time to recover.

It takes a lot of effort to live well with a chronic illness among people that have much more natural energy. They haven’t been forced to face these issues, and they may not understand how little things for them can be big things for us. It’s our job to take care of ourselves while nurturing relationships and living a life we love.

*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/

You Are Stronger Than You Think

Posted on November 22, 2017 by MSAA

By Penelope Conway

There are so many things that I’m thankful for. I could list the usual: family, friends, warm fuzzy slippers and coffee…but those things seem so shallow to me now. Not because they aren’t important, but because my focus has shifted greatly over the years.

This morning, as I sat asking myself why I’m thankful, a flood of thoughts came to my mind. I have seen people faced with terrible circumstances who have become bitter in the process, and I have seen others rise above their challenges and become a light and a source of hope to the world around them. Which am I? Which are you?

As someone living with multiple sclerosis, I remember the day I sat in the doctor’s office when he gave me the unwelcome news that I have MS. I went through a full range of emotions in the weeks that followed from denial, to pain, to anger, to depression, to acceptance. It was a shocking blow to my life and something that I never saw coming. I had plans and MS wasn’t one of them.

It’s definitely been a hard road. I have had to adjust the way I do just about everything because even the simplest of daily tasks have become challenging for me. Some days I even have arguments with myself about getting dressed for the day or going to the store for something other than toilet paper. It’s amazing how much I took for granted before MS.

But you know, regardless of the struggle, I refuse to give up. I will NOT let MS keep me from being thankful…or from living.

The questions that I’ve asked myself, even just recently, have been simple. Can I be thankful regardless of the circumstances I find myself in? Can I find beauty in the chaos? Can I look this disease of MS square in the eyes and say, “I am not defeated because of you and in spite of the challenges I face, I will be thankful for each new day I am given.”

I decided to stop questioning why I was going through this crazy storm in my life and resolved to be thankful as I go through. I pictured myself as a tree swaying in the wind, but anyone who has ever lived through a tsunami, hurricane or tornado knows that even the strongest of trees break. It may still be standing when the storm subsides, but scars are left behind as a reminder of what once was branches and sometimes even the trunk breaks.

The truth is, multiple sclerosis changes you. It leaves scars both in your brain and spine, but also in your heart. You change. The storm you are enduring…people can’t see it. Some try to understand, but without living in your body and experiencing your journey by walking in your shoes, they just can’t understand the mental and emotional pains you face each day along with a slew of symptoms. They don’t know how often you cover your tears with a smile and piece together your heart with bubble gum and shoestrings.

Are you stronger because of MS? Absolutely you are. You are stronger even in the breaking. You have endured much and just like how a tree grows new limbs once a storm has torn it apart, you are growing and changing every day. You may be at a place where you feel like the storm is overtaking you, but the winds will calm and the sun will come out.

Hold on with everything you’ve got, then when you find your strength again…hold your head high proud of what you’ve come through and choose to be thankful for all you’ve overcome. I have learned that strength isn’t measured by the amount of things I can do or by how little I cry, it’s determined by the attitude that I have while going through the storms in life.

Not many people can make it through a storm, break, then keep going…but you are doing it. So the next time someone tells you to stay strong, smile in your brokenness realizing that your scars speak of your strength and tell a story that only a warrior can tell.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

An Ode to Mobility Aids

Posted on November 20, 2017 by MSAA

By Doug Ankerman

As one with multiple sclerosis for twenty-one years, I have much gratitude and thankfulness to share.

Certainly family comes to mind with their heartfelt devotion, care and attention to my round-the-clock stumbling. My health practitioners earn a much deserved shout-out. As do complete strangers willing to help load packages into my car, offering their place in long lines, to the deputy opening the cell door.

But this isn’t about them.

This message of gratitude honors the gaggle of mobility aids I depend upon each day.

First, my wheelchair. My loyal steed. Though reluctant to use the chair at first, it has become a savior of independence. Taking me through sun, snow, rain and mud, my wheelchair has jostled my backside countless miles. It has allowed me to see nature’s wonders. Witness major events. And traverse cavernous big-box stores. Yes, independence would not be possible without my chair and for that I am grateful.

Next, my rollator. The rollator sits in the garage mostly waiting for yard work to be done. On those intrepid days, the rollator allows me to walk over uneven grass while keeping my weaving body upright.

Plus the rollator’s basket is perfect for carrying small gardening tools, gloves and chilled beverages on warm days. (An MSer must keep hydrated, you know.)

Lastly, canes are my everything. Always within arm’s reach. Canes allow me to shuffle along without leaving messy fingerprints on the walls. My canes help me stand. Canes let me look someone in the eye. And feel somewhat unburdened. Although my gait is glacier-esque in speed, I have tried to create an illusion of fleet-footedness with the clever use of Nike swooshes added to their tips.

If you are curious, they didn’t help. I am still sloth-slow.

My mobility aids have given me life post-diagnosis. Hand controls, wheelchair, AFO, rollator, Dyna-splint, canes, grab bars, I feel like the Inspector Gadget of disability. But it is all for a purpose. A purpose of independence. And for that I am grateful.

Thank You, Maybe

Posted on November 10, 2017 by MSAA

By Lauren Kovacs

I admit this is a tough emotion for many MS folks. I am not exactly the “glass is half full,” sparkles, and glitter type. Not sure how I survived as a college cheerleader. Many were bubbly, barf. I was more of the stick in the mud with a giant white bow.

Gratefulness has been a learned trait. I force myself to see the green grass and pretty unicorns. I often see giant animals pooping on my lawn with sharp pointy things on their heads. Many of us have to really try to be thankful. Come on! MS has taken a lot and it is not a generous disease.

Alas, finding thankfulness is hard, but we must try. I would fit in well with a Grinch family, however green is not my color. See, glass half empty!

I have to “cheer” myself on just to get to the bathroom in time. Finding things to be grateful for takes on a new identity. If I manage to tie my shoe or put elastic in my hair on the first try, I celebrate it.

Small things deserve great thanks. MS folks adapt better than most. I am a lefty, yet I have learned to apply eyeliner with my right hand. I drove my figure skating instructor nuts because I spun like a lefty and jumped like a righty. In kindergarten, I cut paper right but, wrote left. Drove my teacher crazy enough to put me in some special ed. classes. Little did I know that one day this ambidextrous trait would come in handy. That is something to be very thankful for. I still can’t write right handed, yet every other thing I can do with my right hand.

I learn to be thankful for much smaller things. Simple stuff does matter. Think about just getting through the day. Toilet paper, straws, walkers, naps and all that meaningless stuff is, in fact, deserving of our thanks.

I am thankful my boys can enjoy gluten. Stuffing at Thanksgiving would suck. I am grateful I have enough self-control to resist it. Talk about resisting temptation.

MS reveals how tiny stuff can induce great thanks. I am very thankful for anti-bacterial wipes. I can de-germ my walker and wheelchair wheels pretty easily. Think about where they go. When I did horseback riding therapy, those wheels went over horse poop.

Even though I have had to give up my jeans, being small enough to wear fun kid-size leggings is a trade off. Yes, I have lots of sneakers too, but less of an ankle injury risk than heels. I am truly thankful for that.

It may take some thought, but we can find stuff to be grateful for. It might seem simple to some. I get weird looks for being thankful for my piggy dog, but he cleans up all the food I drop on the floor. He is now on a diet though. Poor guy. He loves food.

I am thankful for having a life jacket. Drowning in my own pool was not on my bucket list. Small things to be grateful for shows humility. It can be fun, too. I love that I can paint my own nails, if I use glitter polish. Covers the mess well.

When going around the table talking about what you are thankful for, think. Small things show that you have character. It might make someone else see how blessings come in all sizes. I personally, am grateful for whoever invented elastics for pants. Sweet tea is a close second. Electric toothbrushes are a lifesaver, too. No swamp mouth.

Being Grateful: Validate the Hardship and Strive for the Bronze

Posted on November 8, 2017 by MSAA

By Stacie Prada

I used to think being positive meant focusing only on the good things in life. I was really good at it too. A friend would say she’d had something bad happen, and I wouldn’t miss a beat to respond with how great it is that a worse outcome didn’t result.

I did it with myself too. It seemed like if I let myself think about the difficult things, that it was being negative. That it could lead falling into a dark place of feeling bad and never climbing out. I once had a counselor tell me after 9/11 that thinking about what happened doesn’t make you sad. What happened makes you sad.

In that way, thinking about having multiple sclerosis doesn’t make me sad. My chronic illness and progressing MS symptoms make me sad. Ignoring them doesn’t change the fact that I have both. We’re not limited to feeling one emotion at a time, and feeling sadness or frustration with one aspect of life doesn’t preclude feeling optimistic. I’d argue that we need to feel one to appreciate the other.

To feel genuine gratitude, I need to know it’s not mandatory to stuff my feelings and be happy every moment. I can’t ignore the tough parts of my life and only acknowledge the things that make me grateful. I can’t just write a list of unrelated things to be thankful for and stay sane. If I’m feeling sad or resentful, I need validation that it’s understandable to have those feelings. If I skip this step, I’m minimizing my frustration or implying I don’t have a reason to feel bad. Once I sit with it, grieve for it, and assure myself I’m not weak or overreacting, I can then choose to focus on things that make me grateful. Sometimes it’s a quick shift, other times it’s a rough climb out of funk. Either way, it helps me come to a place of genuine appreciation in my life.

I think about it as winning a bronze medal. There’s an article in Scientific American, Why Bronze Medalists Are Happier Than Silver Winners, that I think we can use in our own lives to be happier. People who compete and miss winning first place exhibit less happiness than people who don’t perform as well but still make it to the podium. Silver winners focus on the one person who did better. Bronze winners compare their performance to all the people that tried and didn’t win anything.

When I’m grateful, I’m recognizing my efforts and satisfaction. I’m not seeking perfection. I’m looking at how amazing things already are. I may acknowledge what could be better, but I’m recognizing all the ways it could be worse. Some people seem to have a point of pride of noticing the error or the flaw in things. They can make you feel like you’re never good enough. Try not to judge yourself harshly and add to feeling miserable.

How we perceive our situation makes all the difference. When living with a progressively disabling chronic illness, things will stink and be sad and frustrating and feel too big to deal with at times. Sometimes the best I can do is know that how I feel right now won’t last forever.

The measure of success changes depending on my health. If I can participate in a race and come in last, I’m grateful that given my circumstances I can do it at all. If I feel bad, I know that’s a part of the condition and grateful for the abilities I still have. If I’m experiencing a permanent loss, I acknowledge that it’s sad to experience the loss and grateful for the time before the loss.

Strive to have a mindset of someone who’s coming in third. Or someone who’s in last place and may or may not finish. You’re still doing it.

Never Stop Asking Questions

Posted on October 23, 2017 by MSAA

By Penelope Conway

Making my way through the medical insurance nightmare has been a challenge since being diagnosed with multiple sclerosis. It wasn’t something I thought much about before MS came along. I never really got sick so health insurance and my own well-being just wasn’t a priority. Talk about a learning curve. I was thrown into things head first and then bounced around a few times before landing hard with a thud.

My life was suddenly filled with doctor appointments, medications, unpredictable symptoms and massive medical bills. I found myself in this new world of the chronically ill and I didn’t like it one bit. To be honest with you, it scared me more than anything I had ever been through.

I think the first year after I was diagnosed, I spent much of my days in a mind numbing fog. I became overwhelmed with the vast amounts of information I found online about MS and the high costs associated with it. The more questions I asked, the more questions I had.

I became more concerned with being able to afford my co-pays and medical insurance premiums than with the latest phone apps or music downloads. I found myself searching for insurance plans that made MRI’s and durable medical equipment more affordable. I researched Medicare, SSDI and early retirement. I looked for ways to afford home modifications and accessibility aids.

I discovered that no one can look out for me better than me.

When I was searching for a supplemental insurance plan that would cover all the things Medicare doesn’t, the monthly cost was too high for me to be able to afford. So, what did I do? I got online and through asking tons of questions came across a foundation that helps people with MS pay their monthly insurance premiums. That was something I would have never known about if I didn’t dig around for answers myself.

I found that asking questions is the best thing anyone can do for themselves.

When the cost of my pain medication went up, again I got online and found that my Medicare drug plan had an exception form that can be submitted to request a lower co-pay. I had my doctor help me fill it out, sent it in and the cost of that one medication went from $45 a month to $3. The insurance company won’t tell you about that option in bold print on their home page. It’s something you have to ask questions about and search for yourself to find.

Then there was the time a few years ago when my powerchair was damaged in a car accident. I was okay but my chair got banged up a bit. I discovered that my homeowners insurance covers things like that. I was able to get a new chair to replace the broken one. Who knew homeowners insurance (or renters insurance) worked that way? I sure didn’t. Another lesson learned by again asking lots and lots of questions.

I don’t think I will ever understand insurance or how they calculate the costs associated with their services, but through asking tons of questions and digging around for answers I have been able to ease much of the costs associated with MS and living with a disability.

You have to be your own advocate, do your own research and never stop asking questions! You may not be able to control the progression of your MS but that should never stop you from taking control of your own health care.

Dealing with Insurance Denials

Posted on October 13, 2017 by MSAA

By Stacie Prada

Over the years I’ve appealed a lot of health insurance denials for different reasons. I’ve dealt with getting denied for claims, denied for policy coverage, and denied for pre-approval for certain treatments. Each time I open the denial paperwork, I can literally feel my blood pressure go up. Now I have something to deal with on top of everything else.

I didn’t learn how to deal with these things in school. Yes, I learned to read, understand text and problem solve, but insurance paperwork is formal, in small print, and not always clear. Getting denied creates an emotional response with financial consequences. I see people shut down when they need to read legal paperwork, and I’m saddened when it costs them money they didn’t need to spend. I’ve learned what to do by dealing with each denial one at a time. Thankfully so far, my experiences have been what I’d think of as the minor league level of insurance appeals where I was able to do them myself.

I’ve had to prove I’m not divorced or legally separated to continue coverage for my spouse. While we were in the process of getting divorced, I legally changed my name to my maiden name and gave them the judge’s order showing the name change. My insurance company wanted proof I wasn’t divorced. I was angry and completely stumped. How do I prove I’m not divorced? There’s not a judge’s document that shows a person is still married. By talking to insurance representatives, they finally were able to tell me what kind of documents would satisfy them. I had to provide them with our marriage certificate, my name change order (again), joint bank statements with the address they had for us, utility bills with both our names, and federal tax returns to show we were still filing as married. It took all of that plus a lot of effort on my part and time on theirs before they continued covering my spouse and re-processed his claims.

I had a provider that would bill the insurance provider and would receive no response EVERY time. We finally learned the routine. First, my provider would let me know the claim hadn’t been processed for a long time. I would then call the insurance company to ask about it, and the person on the phone would tell me it was in process and should be paid within the next week. While absurd and seemingly a tactic used to avoid paying, I accepted it as part of the process with that company and my provider.

I’ve formally appealed my insurance company’s refusal to cover my disease modifying medication at a dosage of three days per week. I knew the daily dosage worked for me, but I couldn’t find seven different areas on my body to do injections each week without body tissue breaking down. I tried two other medications and lived with terrible side effects for over a year hoping they would subside without success. While appealing the insurance company’s denial, I lived without any disease modifying drug for six months. It was stressful going without something that has been proven to slow progression of MS. Not knowing if it would get approved or how long it would take compounded the anxiety the process caused me. I wish it had occurred to me to look online for examples of appeal letters. While mine was effective, it took me a while to write and was stressful worrying that it wouldn’t be successful.

I’ve had bills come through that have been denied because the provider billed the wrong insurance company. Just the most recent bill would have cost me $750 out of pocket if I hadn’t been paying attention. It astounds me to think of all the money people are paying that they shouldn’t. All because it looks like every step has been done and they’re told the remainder is their responsibility.

I know people who think that yelling at the company helps. Personally, I think yelling at the customer service representative is a waste of time. That person didn’t create our insurance system and isn’t the one creating policy at the company causing your frustration. I think the people answering phones are just following orders and trying to keep their job to support themselves and their family. Letting them know you’re frustrated is useful. Yelling and not listening increases the amount of time it takes to figure out what the issue is and what will help. It adds to my stress level and makes my life harder. Advocating for my care doesn’t need to feel like a battle. By being friendly, I’ve had pleasant interactions with insurance representatives that have brightened my day.

What I think helps me navigate insurance appeals:

If you don’t understand the denial, call the insurance company and ask them to tell you what the reason was and what you need to do for them to approve or re-process the claim.
Be pleasant to the person on the phone. If I’m upset, I’ll tell them, “I know this isn’t your fault. I’m really frustrated, so please bear with me.” I can hear the person on the phone relax, and it seems they’re more willing to help problem solve my issue.
Accept that often you’ll need to provide things repeatedly. Sometimes it’ll be each time a claim is processed, others will be annually.
Maintain good records of medical bills and payments. See my blog post for tracking medical bills if you want tips or a system: Creating Some Order In The Medical Billing Chaos. If you haven’t kept good records, just call your insurance company and your medical provider to figure out what the status is and what you can do now.
Open all medical bills or insurance statements when received to see what they say. It’s tempting to put bills and other mail in a pile for later, but that’s a habit that makes it easy to lose track of paper and time. Waiting will only compound some issues and leave you with less time to resolve them. If it says it’s covered, you’ll know how much you owe. This may shape decisions you make regarding purchases. And sometimes it’s good news!
Keep copies of documents with medical insurance files so that you know what was provided in the past. It will also be ready to send again when they repeatedly deny coverage for the same issue.
If feeling the tendency to shut down, take a break. A few minutes or days may be needed to be able to work on it again. Usually appeal deadlines I’ve seen are 180 days. Know the timeline, and don’t wait until the end. Otherwise you’ll keep getting bills that can hang over you and cause anxiety.
Share your experience with friends or coworkers on dealing with medical appeals. They often have experiences of their own with advice that may help you in your situation. You may also be helping them be better prepared for dealing with their own insurance issues.
For writing appeal letters, look online for examples. I searched for “prescription appeal letter,” and found many terrific examples to follow. If you enter the specific name of the medication or device you’re trying to obtain with “appeal letter” you’ll find lots of tailored examples. If there isn’t one specific to your situation, use the others as a guide for how to convince your insurance company to approve it.
Remember you don’t always have to figure out everything on your own. Look for your resources. There are online suggestions from organizations about dealing with insurance. Friends and family can often break down the issue to a level that’s manageable. If the stakes are really high, you may want to get professional assistance with your appeal.

Having a chronic condition that requires ongoing medical treatment is already frustrating and draining. Learning how to navigate the insurance world and cultivating the patience needed to deal with it goes a long way. It can improve your medical care, reduce out of pocket expenses, and make life a lot easier than it might be otherwise.

Changing Routine

Posted on September 22, 2017 by MSAA

By Lauren Kovacs

I was employed outside the home years ago, but I chose to stay home when I started my family. Just when I was ready to go back, after 12 years, the MS had other plans. Routines and MS are a must, for me now. I love routine! I can’t do “last minute Lucy” or be spontaneous.

I have the same foods for breakfast and lunch. This helps me keep my bowel routine. If I have not gone potty that morning, I rarely leave the house. Staying close to my diet is tough, when away from home. I love junk food. Gosh, I love it. I really love gluten too.

I nap at the same time everyday. Even my dog knows when naptime is. I schedule everything before noon. Even Provigil let’s me sleep. Routines are essential.

You do have to bend the routine at times, however. Just make sure you have a plan, if your routine takes an unexpected turn. Knowing ahead of time what to do, if your routine is pushed off a cliff or thrown into a muddy ditch.

A recent two-day beach trip left me for dead. I knew the MS sharks would circle the chum, but I did not have a plan. I ate out and while it was tasty, the gluten boat threw me in with the chum. More MS sharks circled.

It took days of fatigue, tears, stomach issues and fights with other germs to come out on top. I conquered the mountain. When I only needed one nap a day, I knew the current was changing.

Two weeks later I was still in bed by 8pm but, my three boys had a blast so, it was worth it. I still was face down in the bed trying to get a nap. Alas, I was finally able get into the bed and didn’t need to sleep on the floor.

MS is not glamorous. Have plan B and C. Routines are wonderful, but have a back up plan or two or three. Being thrown off a cliff might seem ok, if you can climb up. Once you make it to the edge safely, then what? Don’t think that because you feel ok that you are.

MS Skills

Posted on September 20, 2017 by MSAA

By Doug Ankerman

It can be difficult to accept when multiple sclerosis steals your ability to work. A lifetime of training and talent gone. Poof. I know it was for me after giving over twenty years of sweat and soul in radio and advertising.

But because you have MS doesn’t mean it’s over, man. You simply need to change your perspective.

Having MS has given me (and probably you) a whole new skill-set from which to draw upon.

Let me explain with a tongue-in-cheek look at an MSer’s new level of expertise…..

Meticulous Note Taker: You write down everything to recall dates, times, appointments, names, to-do, shopping lists and more. Sticky notes are your blessing. And because your handwriting is so sloppy – only YOU can decipher your scribbles.

Medical Equipment Operator: You are quick to determine which piece of equipment you will need to accomplish a task. “I have the energy to walk today with canes.” Or, “I feel weak so I’ll use a scooter.” Also, you are the only one who knows how to properly collapse a rollator/wheelchair.

Personal Charging Station: You can doze off anytime, anywhere, in any situation or body position. Only you can snooze in a straight-back chair. Ten minutes to recharge and refuel and you are good to go.

Pro MRI Taker: You have done this so many times there is no fear of the tube. You thumb your nose at a Contrast. By knowing the difference of the machine’s bings and boings, you know when you can wriggle, shift and scratch.

Restroom Consultant: Because of MS, you have tried them all. Therefore you know the best and the worst. The clean and the filthy. The accessible & the not so. Because of your expertise, some call you the “Triple A” of public bathrooms.

Floor Surface Evaluator: You have the ability to determine the walk-ability of the environment. You are alert to surfaces that are rough, slippery, thick, plush, wet or uneven. Uphill and downhill are no match to an MSer’s precise judgment.

Finally,

Stain Lifter: As one with MS you know how to get out food stains. You know when to blot and when to dab. When to rinse in cold water or when to pre-soak. While some carry an EpiPen, those of us with MS are never far from a Tide-To-Go. Being sloppy has a down-side, but an MSer is always prepared.

See, you DO have skills and talents that set you apart from the rest. Most importantly, you have the confidence to look MS in the eye and prevail. Multiple sclerosis can’t take your determination, intelligence, or guts unless you allow it. Hold your head up. Be proud. And keep fighting.

*Doug pokes fun at MS and other nonsense on his humor website at myoddsock.com. He also disappoints his family on Twitter @myoddsock.

The Best Next Turn: Changing Careers

Posted on September 13, 2017 by MSAA

By Stacie Prada

Hands down one of the best changes I’ve made since my multiple sclerosis diagnosis is changing careers. While I still work in the same organization, I work in a completely different field. Still, I draw upon skills and knowledge I’ve gained from every job and experience I’ve had in my life.

My career path has in no way been anything a career counselor would have designed to get to the job I have today. In college, I never would have believed that I would have my current job and love it. I also never would have imagined that at age 38 I would get diagnosed with multiple sclerosis and realize with hindsight that I’d had MS since my early 20s.

The career I had previously was great for me. I was good at it, and it pushed me daily to grow and learn. I was rewarded with promotions, pay and increased responsibility. I liked that I contributed to my community in a way that helped people through complicated requirements and paperwork. I liked being an expert in the field and making suggestions that would allow them to do their projects with the least hassle. That job also required nonstop interaction with people in stressful situations, and it took a lot of energy physically. I would cram my weekend with rest to recharge enough to take on the next week. Sometimes it worked, but more often it didn’t.

When I look at my employment path since the age of 16, I see that I consistently looked at what was available and with each choice made the best next turn. I’ve been in industries with no perceived connection to each other. They include food service, retail, skilled labor, government, business, and office. I’ve worked for myself and for others. I’ve worked at restaurants, a ski resort, a woodshop, a real estate office, an art gallery, in a building and planning permitting office, and a financial office.

A few years ago, someone approached me to assume their job when they retired. I hadn’t even known that person was watching my work! The job had never occurred to me as remotely possible for me, but now I have it and love it. It took a lot of effort to make the transition, but the payoff was huge for my quality of life and the pay cut worth every penny.

In my new position, I still learn and grow every day, I contribute to my community, and I help people. I also have a job with a mix of tasks that allow me to engage with people as well as have focused project work without interruption. The mix helps me accommodate my fatigue issues immensely.

There are no guarantees for anyone for what tomorrow will look like. An accident or unknown health condition can take anyone out of the workforce at any time. I know my condition will progress, and someday I will need to change my employment or even stop working all together before I’m ready to retire. My job now works for me today, and I hope it works for me for some time.

While having MS can make me feel vulnerable with my employment possibilities, I find I’m happier when I don’t prematurely limit myself. When I come from a place of confidence in my abilities, I have hope and feel I can achieve anything I really want.

Career advice I would give myself and others is the same for starting a career as I think it is for winding one down.

Build relationships. Sometimes the people we work with see something in us that would be good for a job we never considered.
Learn whenever possible. Pursue things that interest you even if they don’t seem related to your job at the time. I’ve found in my career that no time spent learning has been wasted even when I changed fields. Everyone brings a different set of skills, knowledge and background to every job. It all adds value even if the fields seem unrelated.
Know your strengths, and build on them. Understand you have a weakness as a consequence of that strength.
Know your weaknesses, and get so good at coping skills or accommodations that they don’t hold you back.
Be open to opportunities that surprise you and haven’t occurred to you.
Do a good job wherever you are on whatever you’re doing.
Be someone that people like working with and want to have around. I’m a firm believer that we’re all replaceable in our employment. If we die tonight, someone else will eventually fill the job. People help and look out for others they like and respect.
Never burn a bridge. People you thought you’d never see again sometimes boomerang into your life again. Forgive them and don’t hold a grudge for poor behavior, but don’t forget it either since they’ve shown you who they are. (I’ve had people treat me poorly given they didn’t respect my position, and later I was their boss or someone they really needed to work with. Seeing them suddenly treat me much better is off-putting.)
Know when a job isn’t right for you anymore. Focus on making the choice that feels right for you each point along the way. If you change later, it won’t be failure. It’ll just be a redirect.
Be wary of making decisions from a place of fear. It’ll stifle your potential and happiness.

I’ll never willingly leave a job without having my next life chapter ready to start. As my body declines with age and illness, being the best me at each point will undoubtedly lead me to see the best next turn.

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