Do You Live Life in an MS “Bubble”?

We recently shared an article with our MS community about living life in an MS ‘Bubble’.  So many of our community members expressed feeling similarly to the author, Ashley, and feeling like they retreat to a mental hideaway when stress and depression of MS becomes too much to handle.  Their responses were amazing, and we wanted to share some of them!

Preferring the “Bubble” to the Outside World

“The bubble is challenging sometimes, but it’s also safe. There are just some days where challenging myself isn’t worth the risk of falling, dropping things, etc. Trust me to know my limitations. I’m not lazy. I haven’t given up”

“Thank you for giving the perfect title to the place where most of us escape to from time to time as needed.  People may not understand why we retreat to our “bubbles” but they are a safe place for us no explanation needed”

“I also live a lot of my time in a bubble…I sit with my back to everything, and play 1 level of 1 game for hours on my laptop. I tell my husband and son that I need to zone out for awhile and thankfully, they understand”

“I mentally prepare.  No appointments, tell hubby having a recharge day, not doing anything.  Sit, drink tea, watch lots of TV and/or read”

“Being trapped so much is why I’m on social media so much…I miss getting out, but I also really appreciate these online acquaintanceships”

Hiding in Your Bubble Instead of Engaging with Others

“This is just me.  I definitely shut myself away in a bubble—90% of it was my illness, 10% was that I just found it hard to be around people. It’s hard to listen to everyone’s great lives when your own is crumbling around you”

“This is so true. I’m supposed to be meeting friends for lunch tomorrow, but my fatigue levels are terrible just now.  I don’t want to cancel and I don’t want to let people down, but I also don’t want to fall asleep.  It would just be easier to stay at home in my protective bubble”

“Sometimes people can be so cruel it makes me want to run home and stay there. I’m very comfortable by myself now”

Enjoying the Ability to Avoid Responsibilities and Daily Tasks

“Really! It can be challenging just thinking about moving or turning over in bed!”

“This is so right!  People just don’t get how hard it is to do the simplest things.  Like shower, get dressed, and go out.  The first to get done.  Maybe pj’s go back on and stay home is more like it”

“Thank you for saying it!  Get so sick of people saying that going out will be ‘good for me’.  NO it won’t!  It will exhaust me and make me feel ill for days, sometimes weeks!”

“Hermits unite!  Lol!  People with NO energy don’t wanna move…let alone GO somewhere…”

“It’s just easier to stay at home than to get dressed which tires me out more than I can say”

“It’s just easier…I don’t even want to go on vacation”

Not everyone reported feeling safe and comfortable in their bubble, however.  Some of our community members said they even try to fight the bubble as much as possible, and stay engaged and active.  Let us know how you view or use your personal MS bubble, and how it affects your daily battle!

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The Call of the School Supplies

By Lauren Kovacs

We all dread it, as parents.  The school supply trip.  It beckons us and sinks its teeth in.

With three kids, this trap is one I can’t elude or ignore.  I try to do it in one trip, however I usually go to a dollar store first.  A big box store is my final stop.

Going early in the morning helps avoid oppressive summer heat.  My kids are on a year round schedule and it is a must.  I like to avoid the real scary call of the wild by not going later in the day.

I have recruited my little troop of squirrels.  They each are sent into the shelves to finds an item, while I am the list holder.  I busy myself by looking at the new boxes of crayons.  Even though they are past using them, a box always shows up in our bags at checkout.

I coordinate from my wheelchair.  Once they find their nut (supply), it goes into the cart.  After our adventure is complete, I reward them with a treat (candy) and the call of the school supplies is silenced.

There are always random things a teacher wants.  I turn to the net for those.  It saves me a trip out.

Reward yourself.  Buy a muffin or donut for yourself.  It takes work to get those supplies.  Share in the joy of new school stuff by treating YOU.

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Creating Some Order in the Medical Billing Chaos

By Stacie Prada

Medical bills can be daunting to track when a person is healthy and only has a few appointments a year. When a person is injured or has a chronic illness, the number of medical bills and insurance statements that arrive by mail can be staggering. Compounding the confusion is that they’re often confusing to read and understand.  Trying to track them and know which bill has been covered, denied or ignored can be overwhelming. It can also get very expensive if you end up paying for things your insurance should cover.

Keeping a checklist and single filing spot for these medical bills and insurance statements lends some order to the chaos and helps reduce the stress of dealing with financial tasks.  It took me a while to come up with this method, and it has since evolved to a pretty simple method it works for me.

Medical Billing Tracking Example

Medical Billing Tracking Example

I created a checklist to track each visit with information needed to track payment. I use a fresh checklist for each doctor’s visit, MRI scan or lab test since each one may require working with different billing companies.  I print these on 4×6 index cards, but you could use any size paper that works for you. I’ve included a blank Medical Bill Tracking Sheet and one that I’ve filled in as an example in this post.

  1. After a medical appointment, fill in the top of a Medical Bill Tracking sheet with the year, provider and the date the Appointment/service provided.
  2. When a bill or insurance statement arrives in the mail, open it, read it, and add notes to the tracking sheet. Staple the bill or insurance statement to the back of the tracking sheet. Any time a new piece of mail arrives regarding that appointment; staple it to the back of the tracking sheet.  It will build up to a stack of papers that all relate to that appointment.
  3. For an insurance statement, see if it was paid or denied. Often, if it’s denied, they’re really asking for additional information before making a final decision on the claim.  You’ll have a time limit to provide the information, so it’s important to read it and understand what it says.
  4. If you have more than one insurance plan, coordination of benefits can become a part time job. Get used to calling each of the insurance providers to ask who has covered what and what they need to keep processing the payment.  You may need to call the other insurance company or medical provider for information to fax to another company. Be prepared to spend a lot of time on hold when you call. Take good notes and get used to being your own financial advocate.
  5. If you receive a bill from the provider, look to see if insurance has covered anything.  If it’s not listed on the bill, call the provider to see if they’ll bill your insurance. If not, you may need to submit the bill to your insurance company yourself. I’ve often had instances where the bill wasn’t paid by my insurance company, but when I called the provider I was able to confirm my insurance information and have them resubmit the bill to insurance.
  6. Sometimes the provider doesn’t hear back from insurance and will send you a bill for the full amount.  If that’s the case, call your insurance company and ask what the status of payment is. I’ve had providers frustrated that they hadn’t received payment after billing insurance.  One year each time I called my insurance company, the representative would ask questions about the date of service and provider’s billing date before telling me the bill was in process and would be paid next week.  It seemed like a game and too coincidental for every bill, but I just factored it in to the process for moving it along.
  7. Once insurance has paid for medical expenses covered under your policy, you should receive a bill from your provider for any amount you owe.  Make sure it matches what your insurance statement says you owe. If you’re not able to pay it in full, call them and see if they’ll offer a sliding scale or payment plan.
  8. Remember there are national and community assistance programs available for people without insurance or ability to pay for their health care. Call MSAA to see if they offer assistance or if they can suggest another organization that may be able to help.
  9. File all of these tracking packets that have been paid in full and are done in one place. You may need them to confirm payment was received if duplicate bills are sent before they receive payment. If you receive a duplicate bill, staple it to the stack. Don’t throw anything away in case the provider doesn’t apply your payment correctly.
  10. If you talk to anyone along the way, write it on the bill or the tracking sheet. Know and write down the name of the person you talked to, the date, and what was said. Being friendly and knowledgeable goes a long way to clearing up any confusion and getting help from people to resolve any problems.

Things to know about your medical insurance coverage:

  • Deductible amount for each year
  • The out of pocket maximum your policy covers, if applicable
  • If your policy includes a Health Reimbursement Account (HRA) the amount you’ve earned for the year.

Knowing this information will help you anticipate how much money you may need to dedicate to your health expenses each year. I assume I’ll need to pay the maximum out of pocket amount each year, and I budget that amount for the beginning of the calendar year. It’s also handy if you itemize taxes and need to know what you spent on medical expenses during the year.  Another benefit of having your records in order is that someone else could understand the status of your bills if you need someone to step in and assist you.

Keeping my finances in order allows me to avoid a lot of stress and time wasted figuring out what’s been done and what hasn’t. While the instructions for tracking this may seem obvious, it’s nice to be able to go back to the steps and checklist when the volume of paperwork gets overwhelming.

Blank Medical Billing Tracking Checklist

Blank Medical Billing Tracking Checklist

*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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Cut the Deck and Deal the Cards

By Lauren Kovacs

This is a big ticket for those with MS.

We never know what our hand will be. Even frequent shuffling can deal you a bad hand.

Our crystal ball has been smashed.  For me thankfully, I had 18 years of a mild MS course. I was able to work, get married, have kids and mostly be like everyone else.

I had been a college athlete and I never thought that being physically active would end.  As an adult, I took figure skating, did Irish dancing and clogged.  I was always up for something to excel at.

The changes associated with declining mobility are extremely hard.  New ways of doing things became an essential skill.  Sometimes, there is no way to really deal with the physical betrayal.  When it comes to medical equipment, picking fun colors seems to make necessary medical equipment less medical.

Changes can come frequently. Cards are often shuffled and dealt quickly.  First, I started needing a cane.  No big deal.  I bought a blue fish cover for it.  A year later, the walker came into the game.  I made sure to get one in pink with big wheels and a cool frog bag attached.  Then, another hand was dealt.  I needed a wheelchair. Not cool.  I was not happy.

I again figured a purple one would be fun.  Going with devices as non-medical as possible was a good way to deal with that change.  I made them extensions of me.  A little pinch of personality and a little bling can go a long way.  I didn’t fold and stayed in the game.

Last year we took a trip and I needed to bring a walker to use in the cabin.  We flew, so I bought a gray one that folded into a garment bag.  I used duct tape with butterflies to make it fun.

I really hated the idea of using that walker, but people saw the butterfly duct tape.  I was able to enjoy our trip a bit little more.  It was still hard to get around, but I felt less disabled.

Making change fun is the only way I can deal with mobility changes.  A pink walker, a purple wheelchair or butterfly duct tapes were simple changes that were not medical.  Make changes as non-medical as possible, when it comes to mobility equipment.  I was dealt a bad hand, but injecting fun is a simple way to make a bad hand livable.

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Dealing with an Unexpected Change with MS

By Matt Cavallo

Multiple sclerosis is an unpredictable disease. I’ve been living with MS for eleven years now and just when I think I am getting the hang of it, something changes and I’ve got to start all over again. When the change is unpredictable, that is when it can be the hardest. This was the case for me when the results of a recent blood test forced me to reconsider my treatment options.

I have been on the same treatment for the past nine years. During that time, my MS was well controlled. My long term plan was always to stay on this treatment. The reason being that I tolerated the treatment well. The only relapse I had during the previous nine years was when I was unable to receive my treatment.

Then came this summer. As I sat across from my neurologist, I knew that something was wrong. He explained to me that my routine lab work concerned him. He felt that my treatment now presented an elevated risk and that it was time to explore new treatment options. I didn’t know how to react. When I came in for my appointment, I wasn’t prepared to discuss changing to a new treatment.

There were many different emotions that ran through me all at once. The first was fear. I was afraid of the unknown. I knew that I tolerated my current treatment and didn’t experience relapses. There was no way to guarantee that I would experience the same kind of positive outcomes on a new treatment.  Also, would that treatment have the same kind of efficacy that I had become used to over the past nine years? On the flip side, would staying on my current relapse expose me to the risk of a potentially fatal side effect?

In addition to the fear, I became angry and started to blame myself for my labs changing. I didn’t know what I did that was different. I was in disbelief with the results and wanted another test to confirm the findings. I left the appointment in denial thinking that the test was wrong and that my risk was still relatively low, so theoretically I could continue my treatment without harming myself. I told my neurologist that I needed some time to think about it and scheduled a follow-up in two weeks.

During that two weeks, I found myself depressed. A second blood test confirmed my fears. I found myself at the crossroads needing to make a difficult decision. On one hand, I could continue down the same familiar road I had been traveling for nine years, but with an increased risk of a scary side effect. On the other hand was a new road and I was unsure what the future would hold on my MS journey. Then came my follow-up appointment.

I was nervous sitting in the waiting room. Even though I had two weeks to consider my change in treatment, I really didn’t know what I was going to tell the doctor. I just knew that whatever I said was going to result in change. I knew that even if I continued on my current treatment that there was increased risk and with that would come increased monitoring and a new sense of worry that didn’t exist before the lab results.

Once we got past the pleasantries, my neurologist looked me in the eyes and asked if I had made a decision. Without thinking about it, I blurted that I would try the new treatment.

With that, I felt a weight lifted off of me. I finally accepted that I had to change and the only way that I would be successful would be to embrace and accept that change. However, I did need to experience all of those emotions before I was open to accepting the change.

The thing that I learned from this situation is that no change should be taken lightly. Pasteur once said that chance favors the prepared mind. In my case: I evaluated my neurologist advice, took a validation blood test, researched the recommended treatments, talked to my wife and loved ones about the pros and cons, and in the end made an informed decision. This was not a change I wanted to make, but the unpredictable nature of MS thrust this upon me. In the end, I am at peace with my decision and embracing the road ahead.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog

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Metamorphosis: Coping With Change

By Meagan Freeman

All things are temporary, including darkness.

Butterflies are a wonderful example of this. Look at these incredibly beautiful creatures, fluttering and dancing on flowers like living magical fairies from some other world.

Metamorphosis CompleteThese are some of the most graceful, elegant creatures on Earth, but they did not start out this way, did they? These creatures began as rather ugly caterpillars and worms. They become beautiful after a long period of change.

This period of change is spent alone, in darkness, with no input from the outside world. They depend on no one during this time, only themselves. This metamorphosis, or period of transformation, is one of the most miraculous biological phenomena on our planet.

Middle MetamorphosisThese creatures completely transform every aspect of their lives, and they do it alone. Lessons of our own can be learned just by observing these creatures. Our period of darkness and transformation begins with our diagnosis of MS. Most of us experience a long period of darkness and crisis from that moment on, lasting for months, or even years. Beginning at the moment of diagnosis, we must completely change our self image. This is a difficult process, and no one can really help us through it. We must resolve this new identity within our own minds, and it takes time.

I often refer to my own years following diagnosis as my “metamorphosis.” I changed entirely, and I am not the same person I was before August 24, 2009. Change is difficult, painful, and uncomfortable. Change is awkward, frightening, and exhausting. But, change is an essential part of life. All is temporary, every single thing in this world. This helps me get through the tough times, because I am reminded that the darkness will not last forever. All is temporary.

The transition from “healthy” to “MS patient” is not immediate, and we should allow ourselves time to adjust to this new identity. After all, we spent decades of our lives as healthy people before we obtained this new label. How can we adjust to this overnight? The diagnosis of MS is made on one specific day, and it is shocking.

After time, I learned to accept this diagnosis, though it still makes me angry, frustrated, and sad at times. The first year after diagnosis was the most difficult, when the mind struggles to accept. Slowly, though…I began to realize that this was reality. This was part of me, whether I liked it or not. What else was there to do other than accept it? I learned to predict my symptoms more efficiently, to understand which symptoms were familiar and which were new.

We each spend a period of time transitioning, accepting, and changing after diagnosis. The most important thing to realize is that it takes time. The way you feel after initial diagnosis: The shock, the anger, the fear…won’t last forever. Your life will go on, and it may even be wonderful. MS does not mean that life is over, rather it means that life has changed. Change is never easy, but it can often lead to great things. Try not to fear the metamorphosis, because you never know how beautiful your life might end up being in the end….

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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Change Perceptions

By Lisa Scroggins

“In this world, nothing can be said to be certain, except death and taxes.” – Benjamin Franklin

Death and TaxesI would argue with Mr. Franklin that his famous aphorism should be amended to include the word “CHANGE.” Change happens whether we want it or not, and this is true for all people. However, for people with MS, change, generally, tends to be unwelcome.

Maybe I need to change my perceptions of change.

Maybe, since change is going to occur, I need to change.

You probably know some older people who frustrate you with their rigid approach to life. Those people whose most common complaint is something to the effect of this:

Young people today are shallow and don’t know how to work!

Or this…..

She is such a malcontent. Always complaining about MS symptom this, and MS symptom that. She should just DEAL with it! I’m not even sure that’s a “real” thing.

For me, change in regards to my MS has generally been negative. Changes, especially in the past few years, have meant less mobility. For others, it may mean cognitive difficulties or the loss of another ability. Given the vast array of symptoms presented by MS, there is almost no limit to the loss (DISability) that might be sustained. It’s exhausting, dealing with MS, or as I have written in the past, “I’m fatigued and I’m tired of it!” (Pun is definitely intentional.) I am one of those people who have been dragged into my new normal, kicking and screaming and protesting loudly all the while! Inexplicably, I have recently changed my resistance to change in one small way. For the most part, I get annoyed with the way that many people seem to prefer watching a video for everything. It’s probably related to my learning style, but I much prefer to read about something. For example, when I Googled “multiple sclerosis symptoms,” I got a huge list of links, and many of them were to recordings, a great deal of which were on YouTube, with some to news broadcasting stations and to WebMD. Typically, I would ignore those and look for the links with lists.

But I stumbled upon a new link and a lot of the information there is in recorded videos. The information is new to me, and I find it very helpful. I have actually listened to and watched several of the videos. This particular website was created by a person with MS, and I have found information there that was new: http://www.msviews.org/msviewsandnews4/ I have to fess up: I only listen to some of the videos there and don’t always watch, so I guess I remain stubborn. The website was previously known as Stu’s MS Views and News, but Stu has managed to get a lot of help on his side and his website has grown a lot. There are partnership links there, and you may or may not be impressed by those, but in any event, there is probably something there for you to take in. I really enjoy Dr. Ben Thrower, who is a neurologist and offers a lot of information in a form that people without a science background can understand.

I was diagnosed a long time ago, and have seen many headlines that read as though the misery that is MS was about to end! HUGE breakthrough! Promising treatment! All the excitement has worn thin for me, and I view such headlines nowadays with skepticism. Remembering the time when I was diagnosed means telling you kids a story. It was the early nineties. My resources were limited: the public library, my doctor, and any local support groups. Email was nonexistent, as was the World Wide Web. There were a few national organizations, and they had 800 numbers, and mailed out written publications. I don’t remember when or how I learned about the MSAA, but it was not the first organization devoted to MS that I knew about, even though it was founded in 1970!

The truth is that a lot of change in the field of MS has vastly improved:

  • The availability of information
  • Treatments: there are more than a dozen treatments available
  • Organizations that help patients dealing with MS
  • Research into the etiology of MS

Now, there are many organizations specifically formed for us, the MS patients, and information is overwhelming. It can be difficult to navigate and even to discern which information is reliable. The pace of change is brisk, indeed, which I believe is positive for us.

Dealing with change can be done with grace and likely will benefit you. I have changed my perception of videos about MS.

What change in dealing with change will you undertake?

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Embracing Change

By Stacie Prada

In the last three years so much of my life has changed.

My beyond-two-decades-long marriage was ending while my career took a completely unexpected and welcome turn. I moved to a new place, and I had a few surgeries. Valued in-person friendships were no longer nearby, and they shifted to Facebook interactions. All of my daily routines I had in place no longer fit into my new life, and I spent a lot of time redesigning them. Often it felt like my entire life was tossed in the air and landed scattered on the ground. Picking up the pieces and deciding how to arrange them again took up a lot of my time and mental energy.

Any of these changes would have been big for me, but juggling them all at once took a lot of effort. MS was a factor in this because I strove to maintain my health throughout these changes. My biggest goal was to avoid an MS exacerbation, and, fortunately, I succeeded.

Experiencing change can alter how I view the world, myself, my past, my future, and the people around me. It’s a mental shift from what I thought I could count on to knowing how vulnerable and impermanent everything can be.  The diagnosis of MS made me question my body’s abilities and health. I thought my body was strong and healthy. Being diagnosed led me to realize that a healthy and mobile future isn’t necessarily in my control. I can eat right, exercise, and get checkups, and still have no guarantee for good health or the ability to walk in my elder years.

Adjusting to change is a skill I’ve cultivated to save my sanity and bring myself mental peace. Some years ago, my New Year’s Resolution was to “Embrace the things that I resist.” It was a great experience acknowledging when I was resisting things and actively shedding the internal resistance I had to doing them. When I was nervous about running a public meeting, I decided to dive in and just do my best. When I liked a fashion choice that I thought might be too flashy, I decided to try it anyway. When the group sang karaoke, I got up in front of the group with my not-great singing voice and sang my heart out. I knew I might sound terrible or look silly, but I let myself have fun doing it.

My personal challenge that year allowed me to think about and recognize why I resisted things, and it helps to think about it when dealing with change. Most of the time my resistance stemmed from the following:

  • Uncertainty for what the next step was or how to decide
  • Being afraid that following that step would lead to an outcome I feared
  • Being overwhelmed from the quantity of things to deal with at that moment
  • Fear of making a mistake, making what I would later judge as a wrong decision, failing, or being judged negatively by others
  • Holding on to a belief that I have control over the future, others, or anything other than what I do, say or believe.

Coping with change:

With MS, a lot of change stems from the domino effect of losing mobility, cognition and physical abilities. Focusing on these losses can lead to depression and a sense of doom. When an exacerbation hits, it’s natural to worry about where it will lead and how it will affect the future. It’s all understandable and natural, but it’s also incredibly unsettling, frustrating and just plain hard. I try to embrace changes I’m resisting by doing the following:

  1. Recognize that feeling unsettled, nervous or fearful is natural. Accept it will be stressful but try to do what I can to minimize the stress.
  2. Think about why the change is stressful. Does it require changing my life, my relationships, or just my attitude?
  3. Seek inspiration and motivation from people who have lived through a similar change. What insight can they lend?
  4. Pace myself. Take on only a few extra tasks each week or month, and reduce some of the things that aren’t necessary for my physical or mental health. Know that my regular life still requires a lot of energy, and something needs to give temporarily.
  5. Know the deadlines and what’s at risk if they aren’t met. Give myself enough time to do things, but not too much so that it feels never-ending.
  6. Break down the steps to dealing with change into smaller doable tasks to avoid getting overwhelmed.
  7. Prioritize based on importance, deadlines, and energy level. If my energy is low, I’ll do the easy tasks for now and the more involved tasks at a time of day when I have more energy. Certain things may also be able to wait months.
  8. Wait to start until I’m ready to commit. I keep a list of things to do, but I don’t start until I’m ready to do them and complete them.
  9. Set realistic expectations and ambitious dreams.
  10. Look forward to something. Whether it’s seeing kids or grandkids grow up and being a part of their lives, traveling, dancing, watching the sun set, or anything else small or large that brings joy.
  11. Enjoy the path I’m on even when portions of it are difficult. Give myself credit for all of the things I do that aren’t hard because I’ve put so much effort in the past into getting better at them.
  12. Trust that I’ll do what I think is right for me each step of the way and that it’s enough.

Dealing with change has been a learned skill for me, and it’s taken a lot of effort to cultivate that skill. It’s been worth the effort to reduce my internal stress and increase my sense of contentment. Relaxing into and embracing change has improved my confidence, given me opportunities and experiences beyond my expectations, and made for a much more satisfied and joy-filled life.

*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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Summer Love

By Lauren Kovacs

Summer is a double edged sword for many with MS.  Making the monster happy is a battle.  While winning the war may not come until a cure, small victories can be celebrated.

Heat is a battle most of us fight.   Staying cool is essential.  Cooling vests with the ice packs work well.  I don’t enjoy looking like someone on safari suffering from some weird allergic reaction, but it is better than the alternative.  Lumpy ice packs stuffed into a vest are not a fashion statement anyone wants to make.

Stick to a routine, as much as possible.  I know having kids home for the summer is like herding drunken cats.  As a mother of three boys and being a frequent wheelchair user, I am very familiar with the struggle.  Pick an activity indoors, like bowling.  It is cheap and you can bask in the A/C with caffeine and cheese fries. You can still participate from a comfy chair.

Fatigue it my number one enemy.  It cuts me down with one swoop and then stabs me to be sure I stay down.  Coffee and soda are the poison of choice for many.  But, as caffeine is a diuretic and liquids have to exit the premises, these are not always good options for those of us dealing with tight time limits on the bladder.  The caffeine crash is another unsavory blow.

I have found timing is everything.  Time medication and naps to your daily needs.  My secret weapon is caffeine gum.  Chewing caulk-like gum is gross, but it gives me a wee kick without frequent trips to the potty.  Using the potty, for me, has its own gymnastic routine.  It also means using precious energy.  I feel like a gnat in winter already.  I cannot afford to use energy on potty breaks.

Take summer slow.  Summer days drift away so fast, but enjoy it too.  MSers are great at balancing.  Enjoy what you can, when you can and however you can.  Sitting in a lumpy cooling vest chewing caffeine gum is far better than missing out.

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Coping With an MS Diagnosis And What Helped Me

By: Stacie Prada

Everything can feel urgent when you’ve just been diagnosed with an incurable disease. Remember that you’ve likely had MS for years. You may have increased symptoms and be in the midst of an exacerbation, and you don’t know if your symptoms will dissipate or be your new reality. My advice is to try to relax. I know, it’s easier said than done.

I remember the pervasive fear I had of not knowing if what I was doing was unknowingly worsening my MS. Wondering how I was going to learn to live with MS and what my future now held overwhelmed me. The lack of control over my body rattled me. It felt like I’d been sucker punched.  While I looked the same on the outside, my waking thoughts were now consumed with, “I have MS.”

Coping with an MS diagnosis is a lonely experience, and I can’t think of any other life lesson that prepares you for it. When I was diagnosed with MS, I’d already lived through and recovered from a 110 mile per hour impact car accident, I’d lost my mother in a plane accident, I’d experienced and healed from family drama and trauma that affected me deeply. And yet, being diagnosed with MS required me to pursue healing in a new way. The threat was within me, and it wasn’t a one-time event. This was something that would continue and likely progress. I lost all sense of control and the stability of feeling like I could trust my body. My mantra became, “I don’t know how I’ll learn to live with this, but it will happen.”

My path to making sense of things and being at ease with them will differ from others. All I can share is what I see in hindsight helped me and what I use today to maintain my health and sanity.

  • If you’re able to, find a counselor you like and see them regularly until you feel like you’ve found some stability. My thought process at the time of diagnosis was that I wanted to have a counselor on deck that knew me and would be available if I needed them in the future. The person I saw validated my feelings, allowed me to vent on things that might have injured relationships if shared with the people involved, and helped me cope with a huge life shift. I can’t stress enough that the counselor needs to be a person you trust and feel comfortable with. Don’t push it. If it doesn’t feel right, find someone else.
  • Look to people with attitudes about adversity that inspire you. For me, two exceptional people who gave me hope were Kris Carr and Cami Walker. Kris Carr has successfully lived with Stage IV liver cancer, used diet and attitude to keep progression at bay, and was living a full, productive life. Cami Walker wrote the book, “29 Gifts,” and describes how she found a way to accept MS and see her value in life through giving.
  • Non-profit groups like MSAA provide a wealth of information on MS symptoms, treatments, and medications. Search their site for specific symptoms you’re experiencing, and try the suggestions that fit with your lifestyle.
  • Patients Like Me, patientslikeme.com, is a site that allows you to create a profile and track your symptoms and have access to other people with MS in an anonymous format. This site is terrific for learning about other people’s experiences with medications, knowing methods for their success in treating symptoms, and tracking your own health. Entering medications, symptoms, exacerbations, and general health information is invaluable for monitoring my own health. It’s important to know that this information is used to help researchers try to further the understanding of diseases, assist in treatments, and hopefully find cures. Some people aren’t comfortable sharing this information, but I’ve found it to be useful and confidential in my experience.
  • Local MS Self-Help groups are a tremendous resource for building relationships and sharing information. These groups involve meeting people who have experienced my challenges and can share their advice. While the information they provide is helpful, I find that meeting people who have lived through the challenges I’m facing and thrived despite symptoms that scare the heck out of me is a huge benefit beyond the suggestions and advice. These people inspire me and reduce the fear I have for potential disability.  They provide an understanding ear when I need to talk, they encourage me when I’m nervous, and they share the humor in living with MS.
  • Facebook groups that focus on people with MS are a more recent addition to my ongoing education and inspiration since they didn’t exist when I was diagnosed. These groups may be public or require you to be added to a closed group. Join to the level that you’re comfortable and that won’t jeopardize your career.
  • Accept that you’ll likely need a medical team, not just one doctor. In addition to your primary care physician and MS neurologist, it’s helpful to have additional specialists available. When you’re newly diagnosed, you don’t need to fill out the team immediately. Just know that one provider isn’t going to be an expert on every issue you’re experiencing, and they won’t be able to help in every instance. When your neurologist or primary doctor can’t help you with something, consider adding people with expertise in other areas like a physical therapist, counselor, naturopath, or urologist. Tell every provider you see about every issue you’re having. I’ve been pleasantly surprised when my physical therapist was able to solve issues I thought my neurologist would solve but couldn’t.

Be cautious when interacting with people who have MS such as in groups like Patients Like Me and Facebook, and try not to take it personally when people are harsh or say something that feels hurtful.  It helps me to remember that other people in these groups are struggling, may be experiencing depression, and may just have terrible communication skills. None of these resources and sources of support will fill every need I have in dealing with my MS. It’s helpful to learn which ones help me in different circumstances depending on my mood and needs.

Overall I don’t expect everyone in my life to understand what I’m going through. Instead I have a menu of resources and a list of people I turn to for support depending on the issue.  It’s taken years to create this list, and I keep adding to it.

I realize that my suggestions may be overwhelming. I’ve only taken on one thing at a time since my MS diagnosis.  I’ve read suggestions and followed what made sense at the time given my biggest issue. I also discard comments or things I read that don’t fit with my experience.

Other than increased numbness, fatigue and clumsiness, the only thing that changed immediately after my diagnosis was that I knew what was causing my symptoms.  It helped me to remember that my health hadn’t changed; only my knowledge of it had.  It took me time to learn what helped me, and giving myself permission to take time to adjust helped ease the stress.

*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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