Dealing with Insurance Denials

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:

  1. 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.
  2. 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.
  3. Accept that often you’ll need to provide things repeatedly. Sometimes it’ll be each time a claim is processed, others will be annually.
  4. 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.
  5. 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!
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.

*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/

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Changing Routine

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.

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MS Skills

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.

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The Best Next Turn: Changing Careers

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.

  1. Build relationships. Sometimes the people we work with see something in us that would be good for a job we never considered.
  2. 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.
  3. Know your strengths, and build on them. Understand you have a weakness as a consequence of that strength.
  4. Know your weaknesses, and get so good at coping skills or accommodations that they don’t hold you back.
  5. Be open to opportunities that surprise you and haven’t occurred to you.
  6. Do a good job wherever you are on whatever you’re doing.
  7. 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.
  8. 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.)
  9. 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.
  10. 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.

*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/ 

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Relationships and Multiple Sclerosis

By Ashley Ringstaff

Living with multiple sclerosis is life changing for the person diagnosed, but it is also a change for our loved ones as well. I often tell people that my loved ones “Live with MS” also, because it is now a part of their lives for the long haul. It’s a learning experience and modification time for all involved. Things change when we least expect it as well, that will need modifications along the way. Meaning, if we relapse, new symptoms occur, etc.

I can honestly say that when I was first diagnosed that I pushed people away, especially my husband. I was only 22 at the time of diagnosis, and I felt like I didn’t want to make him deal with this at such a young age as well. Luckily for me, he is very stubborn and didn’t allow me to push him away, and for that I’m grateful.

There were people close to me at the time of diagnosis, which I no longer associate with. It was not my choice to no longer be friends with them, but things happen. It hurt, to have people abandon me at such a crazy time in my life. I understand now that not everyone can “handle” multiple sclerosis, even indirectly.

The state of mind I had when I was first diagnosed – I was very depressed, as well as angry. I couldn’t even tell you which emotion I was feeling more of at that time. They were pretty much dead even, but one would be more prominent at times, depending on the situation.

Many people, including myself, will tell you that you find out whom your true friends are when faced with such a life-changing event. I’ve made new friends since my diagnosis, and I have come to tell people straight off the bat that there will be times that I have to cancel last minute on plans, or I can’t give a 100% answer on if I can go to an event or not, because it all depends on other factors. Is the event outside, is it very hot outside, etc.

If you’re reading this, and you are in a relationship with someone that has MS, please be patient, especially if they are newly diagnosed. For those of you that are friends with someone that has MS, in a relationship with them, related to them, etc. Please be patient in general. Also, take the time to try and understand what we’re going through as best as you can. It makes it easier for us to vent and talk to you, when you have some sort of knowledge about multiple sclerosis, and how it affects us on a daily basis.

I have a friend that I don’t get to see as often as we would like, but she still texts me or calls me just checking on me… seeing how I’m doing… Do I need anything? I can’t even being to explain to you how much that means to me, and to many others living with MS. Just having someone there for us, it can mean the world.

For those of you that have been diagnosed with Multiple Sclerosis, you are not alone. You have so many of us out here in the MS community that will be there for you and talk to you, and just let you vent… we may need to vent in return. I’ve had so many people message me on social media, and are so glad that they have someone to talk to about this illness, that “get’s it”. Also, know that those around you might want to be there for you, but they just don’t know how. You need to let them know what they can do help you out, or even suggest some things they can read, etc. I know it’s easy to isolate ourselves, to avoid people leaving us in the long run… but then you have no one there for you in the end.

There are so many resources out there that offer ways for you to build relationships with others living with MS in your local community, online, etc. Here is a listing of the organizations apart of the MS Coalition, click here. Here is another listing as well, click here.

Whatever you are feeling and/or going through, it is never ‘wrong’. You have the right to feel certain ways, and we can’t control the way MS affects each and every one of us. We are all affected differently, but we are all in this together. I can honestly tell you that many people that I’ve spoken to with Multiple Sclerosis, want to hand out the “MS &Things People Should NOT Say” list to their loved ones, and other articles I’ve written on MultipleSclerosis.net. There is also a list my good friends and fellow writer, Cathy Chester wrote called, “What People SHOULD Say to Someone Living with Multiple Sclerosis.” This is a good article to read for the friends and loved ones of someone living with MS.

I hope you enjoyed the article, and please feel free to reach out to me on my Facebook page if you ever just need to chat.

*Ashley is a 29 year old from Central Texas, that was diagnosed with RRMS in August 2010, at the age of 22. She is a mom of two boys and loves to read & write in her spare time. Ashley is a blogger for MultipleSclerosis.net, you can view her blogs here. Her writing is mostly written with a sense of humor and personal experiences. 

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Me, Myself, and MS

By Marc Stecker

Beginning at the moment of diagnosis, people with multiple sclerosis face a rogue’s gallery of disorienting circumstances. The long process of socialization that starts when we are children never prepares us for life with a chronic, potentially disabling illness. Newly minted MSers often find themselves thrust into an alien landscape without the benefit of any maps or navigational aids, left to find their way through a haze of fear and confusion. The social compact which we are taught almost from birth – work hard, play well with others, and your rewards will be reaped – is smashed to smithereens by these four simple words: “You have multiple sclerosis.”

Among the countless aspects of life impacted by the MS are our relationships; both the external we have with others and the internal we have with ourselves. Several studies have shown that the divorce rate among couples with MS is significantly higher than those of the general population. Adding the responsibilities of “caregiver” to a spouse or lover can be too much for some to bear. Many friendships are held together largely by shared experiences. If a person with MS is no longer able to engage in their previous level of social activity, those attachments can fray and sometimes break entirely. Old relationships are often replaced by new – some of my closest friends are now other people with MS, who understand the complexities of this odd life without need of explanation.

Perhaps the most important and least acknowledged relationship affected by MS, though, is internal, the one a patient has with themselves. Facing the realities of life with a chronic and potentially debilitating illness forces one to reshuffle priorities, reorient and sometimes abandon long-held hopes and dreams, and ultimately grapple with who they are at the very core of their being.

Nothing defines the notion of mortality more sharply than being diagnosed with a serious illness. Gone are the illusions of invincibility that we cling to as we strive to climb the social pyramid. Patients with more benign disease may be able to keep up appearances, but deep inside aspects of life that had long been taken for granted are revealed to be not birthrights but precious gifts, subject to being yanked away by the whims of an inscrutable universe.

For the first few years after my diagnosis, when I was still able to work and socialize much as I had before the onset of my illness, at times I felt as if I was a covert agent, possessed of a vital secret kept hidden from the world at large. As my disease progressed and hiding in plain sight was no longer possible, an inevitable reckoning began to take place. I was left to confront aspects of my emotional history that had long been stowed away in the dusty recesses of my psyche.

When my accumulating disabilities forced me to retire, effectively bisecting the narrative flow of my life into “before disabled” and “after disabled”, I found it almost impossible to not look back and contemplate the roads not taken, the opportunities missed. Might a different choice made here or there have allowed me to avoid the trap of multiple sclerosis, or to have lived a richer life before the onset of disease? A question without answers, of course, but also a line of inquiry that begs for the illumination of self-awareness. As the Persian poet Rumi wrote, “the wound is where the light enters.”

MS led to my pondering the me who lurked within, stripped of the material trappings of my healthy life, which more and more became useless as my disabilities mounted. I soon saw that those adornments often served as a sort of camouflage, shiny trinkets employed to distract the overly curious, myself included. Who was I with soul stripped bare by the harsh realities of chronic illness, naked in this strange new world?

I discovered facets of my personality that had been long neglected and rekindled interests and passions that I’d almost forgotten existed. I recognized and then worked on abandoning self-defeating habits I wish I’d been cognizant of when I was well, behaviors that served no purpose other than to hold me back, then and now. I came to understand the power of forgiveness, extended not only to others but also to myself, and that absolving myself of past mistakes was far more challenging than pardoning the misdeeds of others. Indeed, kindness to self can be the hardest form of kindness to practice.

Oddly, I am more at ease with who I am now than I ever was back in my healthy days. And though I’m loath to grant any positives to my experience with this disease, it would be foolish of me to deny the self-knowledge and maybe even the touch of wisdom that multiple sclerosis has granted me. Although creeping paralysis is becoming an ever-greater presence in my life with each passing day, I am and will always be more than my disease. I’m not a unicorns-and-rainbows kind of guy, and I chafe at platitudes about the universe only giving us as much burden as we can bear. But I will say this: getting sick and eventually quite disabled has weakened my body, yes, but it has also strengthened the spirit within

*Marc Stecker lives with his wife in New York City. He was diagnosed with Primary Progressive multiple sclerosis in 2003, and started writing his MS themed blog, Wheelchair Kamikaze, in 2009. As the name of his blog implies, Marc enjoys scaring the bejeezus out of pedestrians on New York City streets by zooming past them in his power wheelchair. To date, there have been no fatalities.

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Creating Relationships with MS

By Laura Kolaczkowski 

When we talk about relationships it’s easy to immediately think of partners, children, and other family members and how our time with them is impacted by our multiple sclerosis.  The twitter hashtag #WeHaveMS rings true because having MS affects everyone in our close family circle.

Then there are other relationships that develop because of our disease – that would include the ongoing contact we have with our care team. Our neurologists, nurses, medical assistances, billing clerks, and everyone else in the MS clinic are people we become familiar with and dependent upon in more than a passing basis, and we develop a long-term relationship with them as well.

As important as our family and our providers are in establishing and maintaining healthy relationships, there is one group that holds more importance than these others – that would be the people who make up the MS community.  People living with MS understand what it’s like to live with this disease, the struggle to make peace with this disease, and how to celebrate and live a full life in spite of this disease.

The relationships I have within the MS community are some of the strongest and most important in helping me to live in a positive way, despite having MS.  I’m fortunate to have made friends, thanks to my MS, who are usually available at any time to stop what they are doing to take my phone call or answer an email.

Many of these friends I have never met in person, but we have that common bond of living with MS that cement our relationships.  More than once my family has looked at me as if I’ve forgotten all the warnings of “stranger danger” and the internet safety while I’ve forged new friendships and comfortable relationships with total strangers.

Being alone with a chronic disease, and particularly with MS, can be bad for us psychologically and often even our physical health can suffer. Creating relationships with others who also happen to live with MS gives us strength in many ways that can’t be measured but is felt deeply. If you don’t already have a special relationship with another person who has MS, I strongly encourage you to join a local support group, an online forum, or even one of the many Facebook groups that focus on multiple sclerosis. Lasting relationships might not develop quickly because those have to be tested over time, but stick with it and I have no doubt you will connect with people of kindred spirit.

*Laura Kolaczkowski was diagnosed with MS in 2008.  She is the co-principal investigator for iConquerMS and the lead patient representative. Her interests have taken her into the world of patient centered research, which is meant to deliver answers that are meaningful to the MS community. She is medically retired from the University of Dayton thanks to her MS, and lives with her husband in Ohio.  She invites you all to join iConquerMS and help solve the mystery of MS.

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Keep it Romantic

By Lauren Kovacs

I am, by no means, an expert on romance or dating. MS is more fact. It does not have bubble shaped hearts floating around. More of a mean Cupid thing.

I married a guy from my church. We met at 17 years old. I was not officially diagnosed until I was 21, but had symptoms at 16. I was the little blonde cheerleader and he was the big high school jock (different schools).

High school sweethearts. Let me barf, I know.

I did well early on. MS did not stop me. MS behaved for the most part the first 15 years.  MS lived with US and not the other way around.

My husband knew the heat and fatigue were issues. I was active with our three sons and did Irish dance, clogging, and figure skating. I only stopped because of pregnancy. MS was locked up back then.

Fast forward. My youngest was in preschool and things began to change. I opened up to him and it was just too much. His active wife was starting her descent. The MS pit is dark for everyone.

Work and family life were a lot for him. Dumping my MS garbage on him was not working.  I clamped up and bottled it. Not smart. There was only so much room in the bottle. It held evil MS air and not some wonderful magic genie.

Fast forward again. The youngest is 7 and the pressure in the bottle starts to leak. I can’t handle it. I knew I could not unleash on my husband. I really needed help. The talk therapist helped a lot.

Now, I can hardly walk. He knows I can no longer write, sew or paint. He and my sons know I need to be near a potty at all times. He sees me struggle. We don’t really play “what if.” We are mostly one day at a time.

I read books and took the marriage personality test. I had taken a similar test when we did our marriage classes. I knew I needed to dump on someone other than him.

He came to his acceptance of MS on his own terms, in his own time. Like most MSers, acceptance comes in time. I am so very blessed. Lots of MSer’s spouses bail. Pressure comes from all directions with MS. Many relationships require slow tweaking when MS is the 3rd wheel in a relationship.

Step into the other person’s shoes. What if you watched your spouse’s slow decline.  It does take a very special person. MSers are special and they deserve a special person.

A disinterested third party is key to keeping the flame lit and keeping the wheels running smoothly.

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Relationship Questions I’ll Ask Now That I Live With A Chronic Illness

By Stacie Prada

Here’s the hard thing about relationships when you have a chronic illness.  At any given time we’re at a certain place in how we feel about our lives and health, and we hope that those close to us can understand and be there with us.  And it doesn’t always happen for our spouses, family members and friends when we need them. They aren’t always able to trust us and be dependable for us when we need them. They aren’t always able to promise or have the ability to be there for us for what we think may be in store for us.

These are good people that have been through tragedies and life hardships before. But sometimes something that isn’t temporary, isn’t going to get any better, and is most likely to get worse is beyond what they can handle.

We don’t sign up for being sick. They don’t either.  The difference is they have a choice. And I’m grateful that it became clear before I desperately needed anyone that the relationship I was in wasn’t one that would support me in my probable decline.

I want to be wanted, not an obligation or sacrifice.  I see other relationships where people get together after one of them has been diagnosed with MS. I’ve seen how they treat each other, and it’s shown me that it’s possible to have a relationship where hardship exists and it’s not perceived as a burden. The hard things that need to be done are treated as things people do because they love and respect each other.

I don’t want a caretaker. I want a partner. I want someone who will do things for me because they want to, not because they feel obligated. If someone isn’t up for it, the biggest gift they can give is to admit it and bow out.

I cringe when I see articles and comments describing friends, marriages and bodies as not “real.”  My marriage was real. And it was good, really good for a while. We were strong and there for each other for a lot of excruciatingly hard times beyond our control. But dealing with what happens and staying around for what might likely come are different things.

For me I realized it wasn’t about whether someone would have me with my chronic illness, the question was whether I wanted them around for my future and helping me with my chronic illness. As I embark on a new relationship someday, I think the questions I’ll want to know the answer to are different and more specific than the first time I married. They extend beyond whether we want children and envision our futures and beliefs align. These are the questions I’ve compiled so far that for me capture relationship traits important for living well with MS:

  1. Can you be gentle and respectful to me when my health inconveniences you?
  2. Can you respect and appreciate me if it gets messy?
  3. Do I like how you treat me when I’m sick or not doing well?
  4. Do you continue to treat me as a partner when taking care of me?
  5. Are you there for me when I need you? Are you accessible? Do you respond to my texts or calls in a timely manner?
  6. Are you there for me because you don’t want to be the bad person or because you want to be with me?
  7. Will you go to doctor appointments with me and share my experience?
  8. Will you do things for me even if they don’t seem like a big deal to you but you know they’re important to me?
  9. How resilient are you? How do you handle stress?
  10. Will how I treat you be enough for you? Will you think being with me is worth the effort it takes?

These questions are reciprocal. Just because I know I have an incurable chronic illness, it doesn’t mean that my partner won’t need the same from me at some point. Nothing is certain, but hopefully building relationships that support unknown futures may be possible.

*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/

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Exercise Your Face Off

By Doug Ankerman

I’m a huge advocate of exercise and stretching in the battle with multiple sclerosis.

Though I understand many of us (me included) have trouble with standing, walking and some basic movements of working out, there is one neglected area of our body we CAN exercise…our face!

Did you know you have 43 muscles in your face just waiting to be used?

Instead, we let gravity take over by pulling our faces downward.  Sagging till we look less like ourselves – and more like Droopy Dog.

Forget all those age-reducing potions and the creamy-crap you smear on each day.  Start looking younger from the inside out by toning up the muscles of your grill.

Exercising your face is goofy-fun and so easy to do even those of us with MS can do it!

I’ve put on my 80’s fitness gear to show you how…..

Make your face reeeeaaal small.  Squeeze your eyes shut.  Purse you lips like sucking on a lemon.

Then make your face big.  Big as ever.  Eyes wide.  Mouth open (Careful of flies).  And do it over and over again several times.

Scrunch your face to the right.

And take it to the left.

Do it again and again.

Wiggle your eyebrows best you can.

Puff out your cheeks.

Crinkle your sniffer.

Stick out your tongue.

Smile big.

Smile bigger.

Work your lips like you are making out with your favorite movie star.  (Mine is Clint Eastwood so I’ll rethink that one!)

You can’t go wrong because ANY exaggerated movement is great for the face.  And you’ll feel instant results.  Your face will feel tighter, firmer and toner (Wait, that’s not a word).

You can exercise your face in just a couple of minutes.  And you can do it anywhere except public places as others may think you have a tic.

Maybe as an MSer, we can’t walk so well, but we can look fabulous!

Get started now.  You’ll thank me later.

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

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