There’s an Earthquake Happening Inside My Body

Posted on June 19, 2017 by MSAA

By Penelope Conway

When someone mentions multiple sclerosis, a lot of people immediately think of numb body parts, walking difficulties and fatigue. Those symptoms are fairly well known, but there is so much more to this disease and so many more struggles that we endure daily – sometimes silently – that should be talked about and shared.

To me, multiple sclerosis feels like an earthquake went off inside my body and different body parts are experiencing continual aftershocks.

I remember one day when I was sitting on my couch typing out an email to a friend and my right hand began shaking uncontrollably. It was weird and scary all at the same time. I literally had no control over it. It seemed to be flopping about like a fish out of water.

I sat there staring at it thinking “Okay, you can stop now.” After some time it finally subsided a bit but still goes on these crazy binges from time to time that I have no control over. I have a weighted wristband that helps contain the tremors but even wearing that doesn’t stop them entirely. There’s always a slight shakiness going on.

Because of multiple sclerosis my body has been known to jerk and twitch without being provoked, I’ve thrown things across the room unintentionally, and once I even kicked someone…although that one could have been on purpose. I’ll never tell.

I also have this weird thing with my ears. They ring constantly and there’s a repetitive flutter happening in my right one like when water gets trapped in your ears while swimming and it’s trying to work its way out. Someone could be talking to me and instead of listening to them, I’m thinking “stop ringing, stop fluttering, just STOP!”

There are times when I may want my legs to move and they won’t, or need a hand to function and it rebels, but when sensation is out of whack too…that’s an entirely different level of weird. I have two fingers on my left hand that feel like ice all day long even in the heat of summer. I also have this strange feeling of water dripping down my cheek from time to time. I know it’s not real but I find myself constantly checking just in case.

Then there’s this strange feeling I have of bugs crawling across my skin and an incessant itching feeling in my arms that won’t stop with scratching, rubbing or creams…all happening inside my body where no one can see.

It kind of becomes like that old saying “If a tree falls in a forest and no one is around to hear it, does it make a sound?” Well, I can tell you for a fact that if the nerves in your body break and no one can see the damage, they really do make you do weird things.

Don’t let your body’s craziness drive you crazy in the process. It’s hard dealing with an out of control body. Sometimes you want to scream at it and at your entire life…”Stop! Just STOP!” But life goes on and nothing ever seems to stop. Know that you aren’t alone. There are others of us who understand and face this unseen monster too in some very weird and strange ways.

Normal is no longer what it used to be.

*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.

B & B

Posted on June 12, 2017 by MSAA

By Doug Ankerman

Let’s be frank. You have MS. I have MS. So we have that in common.

It also means we may have similar problems when it comes to B & B. No, not bed & breakfast. B & B as in bowel & bladder.

Yeah it’s not enough that MS throws a wrench in the works with our gait, balance, vision, emotions, memory, dexterity and much more – but it also takes a swing below the belt with potty stuff, namely lightning-fast urgency to go and crushing constipation.

But after over 20 years of shared bliss with multiple sclerosis, I’m used to it. In fact, the bowel and bladder have become such an influential part of my life, I carry their picture in my wallet.

Every day my bowel & bladder taunt me, tease me and pick on me like two older brothers raze the youngest sibling. So I must stay close to the little boy’s room. At times it’s like being tethered to the toilet. I feel like an astronaut on a spacewalk, only getting so far away from the ship. Or the bathroom in my case.

As a result, I believe my bladder has some type of built-in sensor, like a urological GPS unit.

It knows the location of every restroom near and far. And like a dog, I must leave my mark in every one.

Another element of MS you probably already know…is the closer you get to the bathroom – the more urgent you have to go. Sometimes my urge is so strong I begin the whole “unsnapping, unbuckling and unzipping” process before I get the door closed.

And be warned as the “festivities of going” usually begin as soon as your foot crosses the threshold of the bathroom. The bladder figures “Hey, I’m in the war zone, might as well fire the first shot!”

I could go on why we MSer’s are so consumed with our “B & B’s”, but what’s the point.

We really aren’t that fond of these vital organs, they simply control our every movement…Strike that (Poor word choice)…MSers must keep close tabs of every nuance of our faculties.

Just add it to everything else we have to be aware of, right?

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.

Who Wants to Know?

Posted on June 7, 2017 by MSAA

By Lauren Kovacs

MS has so many symptoms that it is hard to pick one that is talked about the least. I will pick the most embarrassing, potty issues. Admit it, no one touches this with a 49 1/2 foot pole.

Doing “the pee pee dance” is not often brought up. Most moms can pick out a kid doing it though. Dancing is not usually an MS thing either. A pee pee wiggle or shift is all many of us can do.

One minute you are fine and the next minute the dam is about to blow. Not much warning is how most of us roll. Ladies after your period, I know you are draining off that bloat.

Your skinny jeans don’t fit because of the bloat. Skinny jeans are hard to peel off quickly when you got to go, NOW! You can’t wear them any way. Leggings are a nice alternative.

I was never a fashion plate. Being trapped in girls sizes never allowed for much sexy dressing. Being tiny does, in fact, carry some serious disadvantages. Getting things tailored is not exactly practical for me.

Now, I am looking to replace my cute zipper/button shorts with the pull-on style. Easy off when I really got to go. Plus, pulling them down or up, with one hand while using the grab bar for stability with the other is easier.

While athletic shorts are not super flattering, they give me a fast pass to board the potty. Bikers shorts underneath then help keep an incontinent pad in place. That is a mental crutch for me. It is there just in case. I only employ that strategy on long trips. I worry about peeing myself a lot.

Now I stop to tinkle at every place possible. It drives my husband and sons batty. My young iron bladder was replaced long ago by pregnancies and age. Then throw the MS into the mix. Bad combo. Kind of like when my son dips watermelon in ranch dressing. The combo is never good.

On a trip to Canada a few years ago, I used the potty every chance I got. My husband joked that I peed my way through Toronto. Maybe, but I felt secure in my bladder. I never worried about the dam breaking.

I can’t think of potty accidents as being no big deal or just an MS thing. It can be crippling to plan around and deal with. The worry and fear of potty accidents are very scary monsters. They are very real monsters for MS folks.

I always make sure my bowels are clear, before I leave the house too. I get up and begin my day, before everyone else. This gives them the signal that they need to be clear. Gross, but still an unspoken MS thing.

I carry extra pants/shorts in my purse. I roll them and secure with hair ties. Guys may have to carry a man bag. Sorry dudes. Some things you can’t stuff in your pockets.

I went from a diaper bag with stuff for the kids/babies to a large purse. The kids are older now, but tissues, sunscreen, Purell, Advil, Band-Aids, cough drops, and the like are always needed. In a way it is the family bag. Someone always needs something and my purse has it.

Prepare for the worst. One thing I learned from my sons in Boy Scout is to always be prepared. My purse is heavy, but someone is always digging through it. They make fun of its weight, yet my purse is essential to the entire family.

Worrying about potty issues will not rain on my parade. If the storm comes, I am prepared. Make room for worries like fatigue and heat and not potty issues. Try and live the wee bits of life that you can.

Trying is all we can do. Ask a fellow MSer what they do about potty issues. (Go for someone of your same sex. Plumbing matters). Chances are that most will be happy to share. It is mortifying when you have an accident. Have a plan in mind. I am the typical “worst case scenario” lady, but at least I try to be prepared.

Dealing With Embarrassing Symptoms: Constipation

Posted on June 5, 2017 by MSAA

By Stacie Prada

When MSAA asked if I wanted to contribute something for their theme this month I knew I had a lot to say, but I was uneasy being frank about a topic that would be on the internet for anyone to judge. It was exactly that reason why I didn’t play it safe and just talk about embarrassing symptoms generally. Because I felt a bit of fear sharing my experiences with constipation, I decided it was the perfect one for me to discuss. Courage gathered and challenge accepted. So here goes…

There’s no glamour in being good at living with a chronic illness, but there is dignity in exhibiting confidence and acceptance of the reality of living with an incurable health condition. Aging gracefully is met with admiration, and I maintain that living confidently and openly with an illness is worth undertaking. People living with an illness deserve to live a life without shame or feelings of inadequacy for circumstances beyond their control.

Constipation is a common multiple sclerosis symptom. It’s embarrassing, and it’s an uncomfortable topic to discuss. Try to get over the embarrassment of bowel problems. If the doctor doesn’t have previous experience with an embarrassing issue, it won’t be the last time. You may be teaching the doctor something that will be useful for the next patient.

People that have helped me with different aspects of MS constipation over the years have been my Primary Care Physician, Neurologist, Physical Therapist, Urologist, Naturopath, yoga instructor, people in my MS Self Help Group, and close friends who have had their own experiences or been caretakers for their parents.

The MS Self Help group I’m in doesn’t ever respond, “T.M.I.,” or shut down a conversation when they’re uncomfortable. They may get quiet and let others speak, but I’ve never seen someone tell a person the topic isn’t appropriate. Meetings are a perfect resource and safe environment for sharing our specific problems and learning what other people do.

People are trying to be helpful when they diagnose your problem. They’re sharing what worked for them in the past, and they’re excited that they might be able to help you. With constipation though, it’s necessary to look at the consistency of your poop before deciding how to fix it. Most treatments assume you’re constipated because medications are hardening your stool or you’re not getting enough fiber or fluids in your diet. Sometimes those suggestions can help alleviate constipation. But with MS, that may not be the cause or remedy.

Sometimes the problem isn’t the consistency of stool; it’s that the poop should be able to move but won’t. Your fiber intake and hydration level can be perfect and your poop can be the perfect consistency, but the inner and outer anal sphincters may not be operating on command. The problem can be that the nerve messages flowing from the brain to the anus aren’t getting there to let a bowel movement happen naturally. It can also be that spasticity is refusing to let the muscles relax. If poop is the right consistency, then more fiber doesn’t help with this. With laxatives, you can get the poop to a diarrhea like consistency to alleviate unsatisfying bowel movements. While it’s a relief to empty the colon, it’s a roller coaster approach to dealing with constipation.

Pooping regularly and easily requires the perfect combination of good stool consistency and the anal sphincters functioning correctly. When the poop is good but MS lesions are blocking nerve messages or spasticity is wreaking havoc, there are a number of things that can help:

Self-diagnosis: Learn how to detect the root issue causing constipation. Is it stool consistency, malfunctioning nerve messages or something else?
Schedule: Allow time for coffee, tea, or medications to take effect before you need to be somewhere. It may require getting up earlier and taking more time in the morning.
Movement: Stretch, twist, and move the mid-section to shake up the system to help induce a bowel movement. Exercising on a stationary bike, elliptical, or treadmill is good since you’re likely to be close to a bathroom when you feel you need to go.
Self-massage: Look on the internet for “self massage for constipation.” There are a lot of videos and suggestions for how to massage the abdomen to induce a bowel movement.
Breathing: Look on the internet for “breathing exercises for pooping.” Focusing on breathing and moving the belly can help focus attention away from the sphincter, relax the rest of the body, and trigger the involuntary muscles that can help a bowel movement.
Gut health: Probiotics and prebiotics can help maintain regularity, and they come in a variety of forms from pills and liquid supplements to fermented foods and yogurt.
Bowel training: Learn what each muscle in the pelvic region feels like when it’s tightened and when it’s relaxed in order to better control them. Kegels can increase the strength of the muscles and the ability to control them. Biofeedback with a trained professional can help with learning how to better control the external anal sphincter. The internal sphincter isn’t under voluntary control, but learning to relax the muscles in the area can help with bowel movements.
Pooping position: Make sure to sit in a position that isn’t making it harder for the body to have a bowel movement. A foot stool like a Squatty Potty creates a squatting position while sitting on a toilet so that the colon is straight and not kinked.
Supplements: Senna and magnesium are among the many, many laxatives available in pill, liquid, and tea form available to soften stool if needed.
Enemas & Suppositories: Saline enemas and glycerin suppositories can be effective for emptying the bowels when constipation lasts too long and immediate action is needed.
Botox injections and muscle relaxing medications are treatments that can help neutralize the effects of spasticity which is another common MS symptom that can lead to constipation.

The body is an engineering marvel, and when it works well it seems super simple. When things stop working as well, it takes a lot of self-discovery and research to figure out what’s going on. Embarrassing symptoms are frustrating, because they drastically increase the discomfort quotient and reduce the options for gathering treatment options.

Learning to overcome feelings of embarrassment will go a long way to diagnosing and finding treatments for symptoms. Be courageous. Be confident in your duty to advocate for your well-being. Be a good example and resource for others who may need to find their own courage to do this someday.

*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/

Summer…Here I Come

Posted on May 26, 2017 by MSAA

By Penelope Conway

Summer is almost here. It’s a time for pool parties, vacations, picnics, gardening and concerts in the park. With multiple sclerosis it’s also a time of fatigue, weakness, and heat sensitivity that tends to make all my symptoms a gazillion times worse.

The warmer it gets, the more numb my body becomes. I can actually feel the numbness as it creeps up my arms and legs, and as it works its way down my face, neck and chest. My vision becomes more blurred and I lose color clarity in my left eye which can be quite weird. My legs won’t cooperate with one another, I drop things more frequently and naps are a necessity.

Summer for me is a great struggle as I select between the things I know I can do, those that I can’t do and the ones I decide to soldier through limping and dragging my body along. I know one thing for sure: the inventor of the air conditioner should have been given the greatest achievement award that existed at the time because without it, I wouldn’t survive.

Not only do I hibernate in the winter, I do so in the summer too. MS and heat just don’t mix together very well. My body can attest to that.

If I have to be out in the heat of the day away from the coolness of my indoor environment, I try to plan around the hottest times by doing things in the mornings before the temperature becomes unbearable. When I can’t plan around my mornings, I make sure to have ice with me in one form or another in order to keep my core temperature a bit more controlled.

Ice vests are awesome. I never thought I would like wearing one because most of them aren’t very stylish. I thought I would look like a fisherman wearing a tackle box or a construction worker packing pockets of nails, but they actually aren’t so bad. Most of the time people don’t even realize I’m wearing ice. I’ve turned it into my own personal trendy style. Even healthy people get jealous and want one for themselves.

I also try to keep ice water with me to sip on. Sometimes just holding the cold bottle is enough to get me through a bad moment. That and wrapping a cold wrap around my neck help tremendously.

My freezer has a shelf dedicated to ice packs for my vest, frozen neck wraps and partially filled water bottles frozen and ready to be topped off with cold water. It’s amazing how much ice gets me through a hot day outdoors.

Air conditioning, ice and careful planning are my summer norm now. You may not find me hanging out at the beach watching a game of volleyball or spending the day at an amusement park waiting in long lines for the roller coaster, but I will still be having fun and possibly eating a snow cone or two.

Yes, multiple sclerosis has limited me. That’s a fact. But even with my limitations I am able to do things that I never thought possible thanks to innovative technology and devices that help to keep my body temperature regulated. Summer…here I come!

Oooh…I think I just heard the ice cream truck going down the road. Help. Does anyone have a dollar I can borrow?

Summer is the Carnival of Life

Posted on May 22, 2017 by MSAA

By Lauren Kovacs

Step right up and get your tickets for the carnival of summer with MS. Don’t be shy about entering the MS fun house. Try and visit places before the landscape melts in the summer sun. Distortions can be fun and dealt with at the same time.

MS is not fun, I know. Attack it with caution and preparation. Fatigue is an annoying clown that follows you around the carnival. It taps you on the shoulder just when you get your cotton candy. It makes you see it as a fluffy pink pillow. A nap would be nice. Take charge and eat it. I hate clowns.

Sandals can mean cool (temperature wise) feet. Cool feet often lead to cooler bodies. If you are a lady treat yourself to a pedicure first. I recently could not expose my toes because my son told me my feet were “jacked up.”

Stay cool by hanging out in the shade, if you skip a ride, for example. Eating ice cream or a snow cone can help cool you. Just use two hands because fatigue and/or heat can bring on tremors. I learned this by launching my ice cream cup at my mother-in-law. It missed and we laughed.

Laugh at yourself. MS can be funny. It can be very mean, but humor helps calm that beast. If you make light of something you did, it seems to help everyone to move on. Yes, I threw my ice cream cup. Funny. Next.

Wear wrap-around polarized sunglasses, and a hat that you can wet down. I had my manual wheelchair, when we went to a theme park recently. One of my sons pushed me and I occasionally closed my eyes to block out over-stimulation from sights. The glare was reduced when my eyes were open. Too much to look at can increase my fatigue. Glare drives me nuts.

Drinking only water can help limit bathroom trips too. I love soda and I often need the kick from caffeine. However, sticking with water is better. Fewer bathroom trips also help limit fatigue. Wear an incontinent pad, if you need to. They are bulky, but if you are sitting no one knows.

Limiting sights and stopping in shade helps slay the fatigue clown. Only drinking water limits the energy exertion involved with numerous bathroom breaks from caffeinated beverages. Proper sunglasses and hats you can wet down make a big difference. Wearing sandals, if your toes are pretty, can help keep your body cool too.

The summer carnival of life with MS can be tough to navigate. We are always trapped in the fun house. I know it is not really fun; however, the many distortions in our lives can be dealt with. Preparation and humor can help smooth that wavy mirror in the MS fun house.

Go enjoy yourself. Limits are all around us, but do your best. Shade, frozen treats, and limiting energy sucking activities can assist us. Try and stay involved and fight the inner hermit. Send that fatigue clown to the naughty corner, while you enjoy life. Know your limits and have no regrets at the same time. Have a churro. Chocolate melts.

Ice Ice Baby

Posted on May 15, 2017 by MSAA

By Kristi Krause

Last summer I was mid-relapse and hating life. I like to think of flares and relapses as living in a “dark cloud of despair”; a type of brain fog that grows thicker, heavier and angrier as the day wears on to slowly smother the life out of you. Invisible, yet it can not be ignored. Working then felt disastrous, but my patients and coworkers never caught on to my struggles. I was new to MS and beyond frustrated at how much power it had over me. By lunch break, I would send a hysterical text to my husband, “I just can’t do this anymore”. He, my neurologist, and reality joined forces to try to nudge me toward leaving critical care. To that, I stubbornly responded, “Absolutely not, it’s my comfort zone!” The fear of a future reviewing charts in the muggy, stale basement of the hospital fueled my search for help with symptom management.

I read about how cooling measures increase the transmission ability of nerve impulses through areas of brain damage, but had no idea that there were vests, scarves, and gloves made for this purpose. The thought of wearing ice sounded miserable because feeling cold is fairly loathsome. I was desperate when I put it to the test one day at work. Between the disaster direct admission to ICU and my tracheostomy patient having hourly panic attacks, I was severely fatigued by first break. I escaped into the supply closet, grabbed an ice pack to put on my head and five minutes later, the brain fog was gone and I was high. It was almost as glorious as a double espresso shot! Returning often to the closet for the next fix, I became an instant ice junkie.

I started browsing the internet for cooling items and ordered most of what I found. Some were duds and others a godsend. I worked with wearable ice packs under my scrubs, and had extra packs in the freezer to change out at break and before getting into the hot car to drive home for the day. My MD wrote a prescription for a cooling vest so insurance would reimburse the cost (instructions on how to do this are online). I have both ice and phase change inserts for it and I use the vest while working out during most of the year.

My favorite scarf to wear while cleaning the house drapes around the neck for carotid cooling. I still have to take breaks while trying to accomplish simple household tasks that were once no big deal, but far fewer and shorter breaks than normal. Eating a popsicle during said break restores energy even faster! Cooling items can be worn to summer sporting events or for “pre-cooling” on the way to dinner, the grocery, whatever. Music venues, however, are not so welcoming for wearing ice, as security believes you might be smuggling bags of illegal substances. Do not try this! Instead: arrive well hydrated, have a drink, eat the ice, ask for more ice, eat ice the whole time you are there, use the hand fan you brought, and go home before your body begins to feel weird(er).

Summer can be embraced with excitement for people with MS. Cooling measures can allow even the least mobile of us to get outside and soak up the sun. The benefits of sunshine versus vitamin D supplementation are possibly numerous and poorly understood, but why wait for science to figure it out? I am a simple girl; if nature made it and we ran around naked in it for thousands of years, then I believe it might good for us to stop being afraid of it. I do know that with safe levels of sun exposure, there can be a boost in mood, the body can regenerate ubiquinol (ever heard of CoQ10? Hello mitochondria!), and produce immune-modulating effects by generating the hormone, vitamin D. My tips for maximizing these benefits are to drink/eat something green before going outside, waiting about thirty minutes before slathering yourself with sunscreen (depending on where you are, so use common sense), and don’t wash off the vitamin D from your skin as soon as you go indoors.

MS tends to emerge at the worst times in a young person’s life, and new mothers are not exempt. Summer heat can be doubly threatening to someone expecting. As long as I have something frozen on my body, stay hydrated, and remind myself to take breaks, then the dark cloud of despair is kept at bay during summer. My ice vest and cooling gear are even more important to me now that I am pregnant! I workout at a snail’s pace, am easily winded, have frequent temperature fluctuations and painful cramps in strange places. But I still get out there, however sad my little workouts may seem, because I am exercising for two now. Sometimes it takes hours to hit my mileage goal for the day, but I would rather be slow than say “I can’t.” Baby and I will be healthier and happier because of it. I imagine that when August arrives, I will be waddling around the track, wearing my ice vest blissfully unaware of the sweltering misery that I have been warned about when one is due in late summer.

Black Swan MS

Posted on May 1, 2017 by MSAA

By Stacie Prada

I learned about Black Swan events recently as they relate to investing. Multiple sclerosis symptoms and progression seem to me to be personal Black Swan events. Nassim Nicholas Taleb developed the theory based on the history of black swans being thought of as an impossibility. It was a known fact that they didn’t exist. So when black swans were discovered it was a surprise and significant, and in hindsight black swans seemed like something that people could have predicted or should have expected.

Being diagnosed with MS was an enormous Black Swan event in my life. Suddenly the extreme fatigue, numbness and bowel issues that held no explanation for many years were obviously indications that something was wrong with my body. The signs were there, but I didn’t recognize them as related to each other or of any significance. Given how much these symptoms impacted my life, hindsight makes me seem foolish for not connecting them to a major health issue.

Most recently, my feet started buckling more frequently with a frustrating experience of losing the ability to walk temporarily. It surprised me. It made me realize that MS is affecting my legs much more than I’d thought. And in hindsight I remember all of the dismissible moments when my feet would buckle. There were times when one foot would stop supporting me while standing among friends. Other times while walking, one foot would shift so that I lost my footing on flat ground and needed to catch myself. I just thought they were odd, one-off unexplainable experiences. Now I recognize them as a very common MS symptom that I already knew about – spasticity. What is obvious to me now seems like it should have been obvious to me then. In my defense, the frequency and impact previously had been low. Now that they’ve increased, I see a pattern and progression.

Now that I know what’s happening, I can work with my doctor to try to offset how my body is behaving. I’m continuing to do stretching, strengthening and movement activities, and I’m adding medication, massage and physical therapy. My shoe choices are also changing to reduce embarrassment and possible injury. It’ll take time and effort to see if I can change the course of how MS affects me.

It’s like reading a book or watching a movie where all will be revealed at the end. I’m living in the middle of my story, and by the end the mysteries of my body will be pieced together, explained and understood.

*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 stacieprada.blogspot.com

What’s in Your Junk Drawer?

Posted on April 24, 2017 by MSAA

By Penelope Conway

We all have one – that infamous junk drawer that collects a little bit of everything from spare keys, to half used chapstick, to pens, to some unknown mechanical looking thing that nobody is quite sure what it is, to just plain junk. There seems to be at least one drawer like that in every person’s house. Even the most put together house has lurking somewhere in the kitchen, office or bathroom, a junk drawer.

It goes unnoticed until a pen is needed to jot down a quick note, then almost as if by habit you go to the junk drawer. Immediately you open the drawer and begin tossing items back and forth as you rummage through the contents in search of that much needed pen.

You keep telling yourself that someday you’ll clean that drawer out. Someday, you’ll organize it. But every time you open the drawer, the task seems too overwhelming, too time consuming and just plain hard.

Does this sound familiar?

Just like that junk drawer, we have places in our heart where we hide away bits and pieces of the brokenness we have experienced because of multiple sclerosis and other painful life events. It’s messy in there.

I know I stuffed away my own share of hurts, fears and difficulties. Things like the anger I felt because I had to end my career due to my MS progression, the defeat I encountered when I started using a wheelchair, the abandonment I went through due to lost friendships, the fear I experienced because I found I was no longer able to be as independent as I was before MS came along, and the disappointment I felt because I could no longer wear heels. Yes, even my shoe choice was a difficult thing to face.

I kept telling myself I would face those fears, disappointments and pain someday. Someday, I’ll address those things head on. But every time I opened that drawer in my heart, the task seemed too overwhelming, too time consuming, and just plain hard. So what did I do? I ignored it.

Every once in a while I would forget it was there and accidentally open it up. The emotions would start spilling out and I would shut it as quickly as I could.

“Nope, I’m not dealing with that. I’m not ready,” I would say.

But I knew I needed to take some time to dump everything out, sort through what should stay and what should go, and then take the trash out. It wasn’t easy. I actually think it’s one of the hardest things in life to do, but it was time I let go of the hurts and fears weighing me down.

Today is a new day and you are worth too much to hold onto all those weighty emotions tucked away in your junk drawer. Set some time aside and start clearing out the clutter so you can make room for the beautiful things that you deserve in life. You are worth it.

*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.

Spring!

Posted on April 21, 2017 by MSAA

By Lisa Scroggins

Finally, spring is here, and I feel more energized than I have for some time! I suppose it’s a combination of the improved weather, and an improved outlook.

When I saw my neurologist in February, I asked about Lemtrada as well as Ocrevus (which has since been approved by the FDA). My doctor wasn’t very encouraging about either option, and I was frustrated. I talked with my husband about getting a second opinion. I wanted the latest, greatest treatment, and I wanted it now!

I suppose I’m the classic dissatisfied person with long-time MS. Things really went south for me a few years ago, and I won’t lie: I was deeply sad, and shaken by the newest losses I was experiencing. We have made trips to see a specialist, and had high hopes for something new that might help me improve. I’m sorry to report that not only did the specialist not have any new ideas or ones that differed from my general neurologist, but she turned out to be a truly unkind person. By that I mean that from the first moment I met her, her basic social skills were sorely lacking, to the point of rudeness. (Example: when I first met her, I held my hand out to shake hers, and began to introduce myself. She held her hands up, palms facing me, saying, “I just washed my hands!” My gut told me this was weird, but I fought my instincts. I didn’t know this doctor yet, and we’d traveled quite a distance, incurring hotels, meals, gas, etc., and the last thing I wanted to do was go back home without getting seen.) That kind of thing can happen to anyone, but somehow, because MS is a chronic illness, and I made special arrangements to see a so-called expert, I was unprepared for the callous way that the “expert” treated me. It seems obvious in the abstract that not all doctors have a great “bedside manner,” but I confess I was really vulnerable and it hurt, probably more than not being offered something new to try.

Back to my local neurologist and my silent demand that I must be on something new. While I have not officially gotten a second opinion, I feel as though I have. I watched a YouTube presentation by two MS neurologists in another geographical area, and even though the words they used were very similar to what my doctor had said, it essentially was confirmation of what he had told me in February: those two treatments are new, and it remains to be seen if either or both have unanticipated, even serious side effects. I know they didn’t mean it in a disrespectful way, but they as much as said, “let others be the guinea pigs.” Worded more professionally, for people who continue to experience attacks while on another medication, one of these drugs might be a Godsend for them. But if attacks are not occurring, it’s much safer and wiser to remain on one of the drugs with a much longer safety profile.

I did not want to hear this, and yet, I needed to hear this. My husband didn’t say so, but I suspect he is relieved that I’m not pressing to hit the road again in search of a different answer. I’ve come to a proverbial fork in the road of navigating life with a chronic, sometimes cruel illness. The best thing for me to do is to continue on the therapy my doctor has prescribed.

People with MS are taking big risks to try to improve their functioning, and both Lemtrada and Ocrevus have the potential to be quite risky. The biggest buzz seems to be about HSCT (hematopoietic stem cell transplantation). This has not been approved by the FDA, although there are studies in progress. So far, the number of patients is small, and while it looks promising, I realized that I didn’t want to die in an attempt to get the procedure. I know of people who have gone to other countries to get this procedure, and have gone to great lengths to raise the money (in excess of $100,000) to do so. Not only am I unqualified to determine if protocols done anywhere are best practices, I’m also not fluent in any of the languages spoken where some are having HSCT.

Some of these people have died. Some advocates describe that a specific thing happened to this one or that one, and maybe those stories are true. And maybe they aren’t. I really did some soul-searching, and tried to imagine if I pushed to do this. I’m in a foreign country with my husband, when suddenly, I develop a complication. Things don’t improve, and I actually die. Well, then, my husband, having watched everything, has to contact everyone in our family and tell them. He has to get himself (and my body) back home, and deal with everything that happens when someone dies. I’m not trying to be dramatic, but I had to really imagine this. As much as I wish for an improved (maybe even cured!) condition, it seems cruel to put the people I care about most through the wringer. A less dramatic scenario could happen, too, wherein I didn’t noticeably improve, but we’ve spend a massive amount of money, not to mention the emotional capital draining away. And maybe I’d be one of the lucky ones, the folks who swear they’re like new.

Even as I write this, I wonder if I’m giving up too easily. Never stop fighting, right? The truth is that many people with MS profess to be willing to take gargantuan risks to get better. I counted myself among them. I’ve realized that I’m not such a badass, after all.

All of this has served as a kind of “spring cleaning” of my attitude. It’s surprisingly freeing to imagine not questing after another drug! Instead, I’m trying to focus on things that will bring me joy, as well as new “treatments” that I can control. I’m fortunate that we could afford to buy a Freedom Chair, and that allows me to ‘walk’ our neighborhood. I recently signed up for equine therapy and am looking forward to being outside on the back of a horse. Perhaps most telling of all, I found a book that has given me a lot of hope. I know I’ll still follow everything related to MS, I’ll research it and ask my doctor about it. Other people may push hard for something to get better, and maybe that’s fine for them. I’ve decided to focus on the here and now and the known.

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