Thriving in the Face of Adversity

When I was first diagnosed with multiple sclerosis it felt as though my world had been turned upside down. At the age of 25 I had a very clear idea of what my future held, and where I was going. MS threatened to take all of that away from me, and I quickly decided that I would not let it. At first there were plenty of people telling me what I could no longer do, and that I should give up on my ambitions. But I disagreed. I sought out others who strived to make the best out of life and to make a difference despite their disabilities. I ran across so many inspirational people and communities, and soon began to feel invigorated and ready to fight.

I am a nurse, and it just so happens that neurology has always been my passion. When I was diagnosed with MS, it was really eye opening to be on the receiving end of healthcare, instead of being the provider. I realized that I now had a unique opportunity to have a positive impact on others living with MS, and I set out to do just that. I became an MS certified nurse just six month after being diagnosed with MS myself, and I began to work for my own neurologist. Currently I am finishing graduate school, and focusing mainly on writing and educating people about MS through my own site, JustKeepSmyelin.com, and several other websites and publications.

Because I was diagnosed at a young age, there is a good chance that I will live more years with MS then I lived without it. I am currently on Tysabri after failing to respond to four other disease modifying therapies, and it concerns me that my options are already running out before my 30th birthday. Research is the only way to find better treatment options, what causes MS, and ulti-mately to find a cure for this disease within my lifetime. To me, participating in and advocating for research are my responsibility, and even my duty.

I have participated in several research studies to further our understanding of MS. I am also in-volved in the launch of an innovative new research effort called iConquerMS™. Our experienc-es truly have the power to accelerate research efforts, and this initiative allows everyone to share their experiences to do just that. The data gathered on the iConquerMS™ website will be used by researchers to identify trends that could potentially to help us identify the causes of MS, determine who will best respond to various therapies, and find better treatments. iConquerMS™ is unique because the people with MS who participate get to interact one-on-one with research-ers, and can even propose research questions. It is even governed by people with MS, like my-self, making it a completely patient-powered research network.

I have also become very active as an MS activist and I serve on the Government Relations Committee and as a District Activist Leader for my local MS Society chapter. The highlight of my activism so far has been being able to participate in the Public Policy Conference (PPC) for the last two years. PPC is a great opportunity to meet with US representatives and discuss research funding, which is an issue near and dear to my heart. Additionally, I make it a point to visit and contact legislators throughout the year in my home state. It is incredibly rewarding to help get funding to the researchers who desperately need it for their groundbreaking research.

Throughout my encounters as an MS nurse and activist, I discovered that almost everyone I spoke with had some sort of personal connection with MS, and although very few of those peo-ple knew much about it, they were all eager to learn more. I began to work tirelessly to spread awareness about MS in every way that I could, and much to my surprise it began to get me some attention! Last year I was approached by some people who thought my work as an activist deserved to be brought to a larger stage, the TEDx stage to be exact! TEDx conferences are independently organized TED events where speakers give short, powerful talks about their “idea worth spreading”.

Participating in TEDxHerndon was easily both the most terrifying and most rewarding thing I’ve ever done. I tried to compensate for my inexperience as a public speaker by practicing harder than I have ever practiced for anything. I rehearsed for anyone who would listen, went through multiple rough drafts, and practiced my speech every day, often until I lost my voice. My goal was to captivate the audience with my story, to give them a better understanding of what MS is, and to include a universal message that everyone could learn from. I begin and end my talk with the same few lines:

“Life is going to challenge you at some point. It’s going to hand you something unfair, it’s going to take something from you, and it’s going to interfere with your plans. When this happens you have a few choices – deny, cope, or thrive.”

If you listen closely to my talk you will notice that I did all three. First, I denied that anything could possibly be wrong with me. Next, I tried to minimize it and not let it change me or my career goals. Finally, I let go and I allowed myself to thrive from it. We all have our own personal stories about our challenges and experiences. My hope is that we all find our own way of thriving in the face of adversity.

Tags Activism & Advocacy, Research      14 Appreciate this
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Stephanie

Stephanie Butler, RN, MSCN

Stephanie is a nurse, fitness enthusiast, and active blogger. After being diagnosed with relapsing remitting MS she realized that she could use her experiences as a patient to make a difference in the lives of others. Six months after she was diagnosed she became a Multiple Sclerosis Certified Nurse and began working in an MS center where she is a patient.

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    57 Comments

  • John MacGinty   May 5, 2015 11:22 AM
    Good for you Stephanie. I think you have the right attitude and its great that you have found a very worthwhile career out of seeming adversity! I wish you well and every best wishes for a future which will greatly improve the lifestyles of PwMS (I hope you, like me, have a milder form of MS - mine is with me since 1982) Keep up the great work! JMacG
  • Avatar
    maria1  May 5, 2015 1:13 PM
    Bravo and thank you. All your efforts are worth sharing with all of us with ms and even healthier persons who want to achieve. It sounds like there is one word missing from your vocabulary---NO, hooray!
  • Jacqueline Boggs   May 5, 2015 1:35 PM
    I'll be 68 years old this year, was diagnosed about 7 1/2 - 8 years ago, lost my eye sight, got treatment right away, am taking once a week shot Avonex, working great for me. Was told that I won't die from MS, great, didn't know anything about MS, had heard about it. A few people that I grew up with in my neighborhood have MS also, and one second cousin has MS. What are we doing wrong, why is there MS??? Thank you.
  • Kayla Woody   May 5, 2015 3:02 PM
    Stepganie. It's great what you have accomplished. However, are you aware of how MS fatigue affects lives. Not everyone is as healthy as you. When you tell us all that you have achieved, it is sad and frustrating to me and Im. sure others. I am unable to work even 4 hours a day. MS fatigue has put me on disability. You are an achiever without MS and now you are achieving with MS. You are very lucky.
  • Gowtham   May 5, 2015 3:37 PM
    Great Stephanie, i appreciate your Good hard work.. Cheers, keep it going.. Don lose hopes :)
    I was diagnosed 7 yrs back with RRMS.. Nd tdy I'm under a treatment with Tecfidera vch has stopped worsening frm last 3yrs..otherwise I have suffered most of symptoms of MS. BlindNess, imbalance, slurred speech, tingling, numbness every often.. Bt nw I have managed to be strong.. LolzzzzZ :-D
  • Laura mills   May 5, 2015 3:43 PM
    Stephanie your talk is amazing! Very inspirational... I am a cop have been for years both England and now New Zealand! 4 years and felt ok for while then had a seizure so no driving blah blah! Now the Phamaculical company has told my Nero that ok I can go on Tyasbri better than having to self inject every other day... I don't feel like a cop these days but trying to keep a smile. My Aunt had MS she ended up in wheel chair and now she has passed and I have it I know that it effects us all different! Any way listening to you has made my day happier;) thank you so much. Laura
  • Carla Maria   May 5, 2015 4:01 PM
    keep up the great work
    Oceans of Hope is a sailboat circumnavigate the world and now they are in the pacific ocean is global voyage to change perceptions of multiple sclerosis
  • baydenoc  May 5, 2015 4:06 PM
    Thank you for sharing
  • Kathy   May 5, 2015 4:46 PM
    Stephanie- Wow very impressive talk! You also looked cool, calm and collected even though I know you probably didn't feel that way. I'm a RN as well but unfortunately haven't been able to work since 2006. I've always worked in Pediatrics specifically on a Peds. Med/Surgery floor, PICU and the last 5 years that I was able to work as a staff RN in a very busy Pediatric office. I'll have to email you privately for a few specific questions.
    Thanks for all you do!
  • nanciesaad  May 5, 2015 4:54 PM
    Your piece caught my attention & inspired me. Thank you! I have relapsing/remitting autoimmune encephalopathy but there isn't much in the way of treatment protocol, recovery plans, or coping strategies. So, my neurologist smartly suggested I gain knowledge from MS sites because the disease fallout has many similarities. Already what little I've scanned has been very helpful, including reading your article today.
  • Kellie   May 5, 2015 4:55 PM
    I wonder if you tried any alternative therapies to heal
    I've lived with MS since 1988 dxd at 17 and when I was on
    Traditional MS protocols it kept me sick, relapsing and no quality
    Of life. In 2001/2002 timeframe I went with alternatives and
    Holistic treatments and I am symptom free, strong and healthy well over 10 years. Dmds will not heal us and will hurt our immune system and possibly cause death. We need to Look at our whole body and heal our immune system after all without a healthy immune system we'll never have a healthy body!
  • E.J. Siegl   May 5, 2015 4:57 PM
    Hello Stephanie, I can so relate to your story. I also am a nurse. I was diagnosed 25 years go with what is now relapsing/remitting MS. At that time, DMT's were just getting approved and my symptoms were so mild that denial was easy and I did not want to take a drug that would make me feel sick when I felt fine. For over 20 years I was very lucky with mild symptoms. Five years ago my balance became unsteady so I "coped" by using a cane. As a nurse, and I am sure you can relate to this, I always walked fast. When I could no longer walk fast with the cane without risk of falls I swallowed my pride and began using a rollator. I don't always like that I have to use it but it gives me freedom and the ability to go almost anywhere I want by myself. Letting go of that cane was hard but worth it to regain my independence (and, sometimes fast walking) back. Continue doing your activist work- you are making a difference.
  • Jean-Paul   May 5, 2015 5:06 PM
    Excellent! Dx'd with RRMS in 2005, former non-competitive trialthlete who can no longer run, I loved your honesty, transparency, and positive attitude. Truly, God has a unique plan for all of us, and it is best for us to accept our difficulties and just do the best we possibly can with what we have. :)
  • Fiona Law   May 5, 2015 5:11 PM
    I have offen been on this site and read different stories. You left me feeling enpowered and motivated. For this I thank you. God bless and good luck with your MS and thank you for your strength.
  • Larry Thomas   May 5, 2015 5:18 PM
    Thank you. I'm 62, have had RRMS since 2009, I've injected Copaxone since the beginning, along with several other meds. I walk with a Cane always because I've had an issue with falling, I have pain in various areas at various times. Anyway, Thanks and God Bless you and your work.
  • Marti_ski  May 5, 2015 5:51 PM
    Kellie,
    My husband has MS for 25 years and I keep looking for some alternatives but can't find any information.
    Please tell of some you use.
    Thank you, Marti_ski
  • Wendy   May 5, 2015 6:05 PM
    Thank you Stephanie! Your presentation was succinct and excellent! I was dx. with M.S. in 1995, but probably have had it since I was 16. I became an R.N. @ 19 and was pretty good @ ignoring M.S. until I started having trouble walking. Have a lovely wedding!
  • shieter  May 5, 2015 6:22 PM
    How encouraging!

    Everyone has a story ...

    My husband left soon after his parents had moved up from L.I. to live in a cottage on our property. Although in a wheelchair fifteen years after my diagnosis in '70, It occurred to me that I needed to be able to support myself, that I would not necessarily be going into a nursing home. My children began college soon after HS, and I did as well. First at a community college, then transferring to a 4 year college; after getting a degree in social work, I commuted to Long Island to obtain my masters. I worked in the mental health field until a urinary track infection put me in a coma.

    I am now retired, living in part of our huge colonial house that has two other apartments that my son has restored. I still drive and keep active in my community and faith. I love my life.

    If there is a cure ... like some extra myeline kicking around?, I'd take it .... I just don't need it!
  • Avatar
    haleytm11  May 5, 2015 6:36 PM
    Thank you for sharing your story!
  • Bonnie Brown   May 5, 2015 7:41 PM
    thank you, Stephanie. Your courage is an inspiration. Please check out this link that features a film my niece is producing about her mother's struggle with MS.
    https://www.kickstarter.com/projects/mariadyer/bless
  • EUGENE C. HARTWIG   May 5, 2015 8:02 PM
    I admire you so much. I know someone who has MS, a little bit older but she looks as you spunky at time, but as time goes on she's becoming more effective by MS. I do not know much about MS but am very interested as I'm a care giver for a Parkinson's D. person.
  • Daniela   May 5, 2015 8:34 PM
    Hu Stephanie...there is a cure for MS when found out in the begining. I was diagnosed one and half year ago after lost my vision in one eye and the moviments on my right leg. God showed me the right doctor and I am totally fine without any of thise toxic drugs.
    I wish everyone could know about it.
    Blessings, D.
  • billie jo duncan   May 5, 2015 9:05 PM
    Very encouraging to people with ms
  • marsha   May 5, 2015 10:14 PM
    The info on your site, especially what symptoms relate to brain or spinal cord malfunction, interesting. With no disrespect, I, too, at your age was sure a cure to repair myelin would be achieved within my life time. I'm now 68 and was shocked to realize this area of neuology is very difficult. More money to be made with yet another band-aid. I wish you well.
  • terry jensen   May 5, 2015 10:48 PM
    My daughter has RRMS....this nurse's story reminds me of my daughter's own journey . She has shown courage and has made the choice to cope and lead a life of productivity with class and style, in a helping profession as an educator .
  • Avatar
    SmartyPants  May 5, 2015 10:48 PM
    You are an inspiration, the "justkeepon smyelin.com" blog is clever. I look forward to hearing from you as i followed. My case was so different after working 35 yrs in service to people with disabilities i got ms when i was in my fifties, after a long, stressful career, my symptoms forced me to retire. So i was not young like you, i am sure it would be more devastating to be young, but you did not deny and thrived (to use your own words). Congradulations for being on the policy committee and all the advocacy you do.
    My story ended up being a blessing, after becoming very angry that God would take away my life work as a outreach worker for adults living in their community homes, i had two years Jungian counseling and came out of the angry and started being more active, i do five miles twice a day on my incumbent bike and bed exercises, and weights, yoga. I then one day opened my closet and found my journals from when i first moved out to Oregon when i took a break from social services and lived in the wilderness with a group of foresters doing timber inventory for the forest service, well i started reading and started to chuckle and thought this would make a good book and i wrote three books, in "The Eve Chronicles" by Diane DeVillers, "From the Waters of Coyote SPrings" was the forestry days, where i got picked on by the mainly men on the crew and soon became known as "The Queen of the Comeback", the "Felix and Eve" is about when i lived on the OR coast as a live in caregiver for the summer for a elderly man recovering from heart bi-pass surgery, he was quite the crabby one but soon we became friends, each night he would tell me stories as we played cards on his back porch, he told me stories about the days he worked for Al Capone the notorious gangster in Chicago. The last book in "The Eve C" is "The Arrangement" where the now retired nurse, these are fictionalized memoirs some stuff i made up, i always wished i had been a nurse but only was a nurses aid, well the now retired Eve lives in Eugene OR where she now owns a home on Moon Mt, where Vinnie an old friend lives in a yurt in her back yard. Every year she gets a letter with a skeleton key in it and she heads off to Catalina Island where she spends the summer with an old lover who has MS. Vinnie is in love with Eve but remains silent.
    So you see i have do something that i never would have had the time for if i wouldn't have gotten MS, and i always say "MS is the best thing that ever happened to me, as i was a passionate work alcoholic. I believe the chronic stress of being on call and working 16hrs a day for a non-profit (no retirement) was a trigger, that and i had mono when fifteen and grew up in a northern state (WI) my dad swears i got MS when i moved to ORegon where the winters are so dark and where i had very very low Vitamin D when diagnosed. I was misdiagnosed for four years they thought i had sympathetic nerve dystrophy from me constantly tripping from what turned out drop foot from MS.
    So i am warning you about being in a profession where you give so much of your time and psychic energy, that you don't allow the stress to eat you up alive. My MS was getting steadily worse as i was stressed out, but when i quit and found out i had progressive ms, my progression stopped. I have two muscles paralyzed in my r leg, i have severe back pain that i was in bed most of the time on vicodin but when they gave me time released morphine my life changed and i got my life back, sure i have to take flaxseed, mirolax, prune and senna... the list goes on for constipation but if you know anyone that has chronic pain the time released is the way to go. I got up out of bed and started living. I also wondered why the heat made me sick once i had 19 days of vertigo and after having 3 days of infusions of steroids it went away. I have the fatigue too. But without getting MS i may have worked till i was 80. So now i enjoy being retired early and the only reason i didn't lose my house was that i had disability insurance, and by a miracle i got ss disability the first time i applied, (unheard of) if i wouldn't have gotten it i would have lost everything i had worked for all those years. So i am on ssdi and learning how to live as a low income person, all i need to do is think about my former clients and they teach me how to live, adapt, get the durable medical equip i needed, and tap into grants, energy assistance, and MS Society and MS foundation who gave me grants for my swimming, watsu water massage, and massages, massage is the only thing that take my pain away up to a week, so i go every three weeks, what a miracle i found Jesse at Footloose Massage in Eugene, OR.
    So like is good, i advocate for people with disabilities, and i nearly was given the opportunity to go to Wash DC from a policy agency Amerian Freedom something, can't remember, from my Senator Ron Wydens office called me and said if they could arrange it they would fly to to Wash to testify and tell my good story about social security disability system, and testify at the Social security committee with the Ways and Means committee. It fell through as they only had two days to make it happen. Well i hear DC is very hot in August and perhaps it was a blessing. But i would love to go in the future. It's a story i tell people that "I almost went to Oregon" turns out Ron Wyden was the head of the SS committee and he wanted to have me give my positive story of getting ms, that i had responded to from that Freedom policy lobby group's email they sent asking for stories.
    See how long winded I am, well anyway to make a long story longer. I enjoyed your story here and look forward to watching you continue to grow and make changes in the world.
  • Avatar
    SmartyPants  May 5, 2015 10:55 PM
    my website http://dide22.wix.com/diane-devillers
  • Angela   May 6, 2015 1:49 AM
    Congratulations Stephanie, absolutely amazed at your enthusiasm I applaud you. It is so true that life throws you curve balls & it is up to all of us to use it to improve & make the most of our lives.

    I was diagnosed with MS 1996 have had many espisodes over the years had to stop taking tysabri in Sep 2011 due to JC virus. Then was diagnosed with stage 3 breast cancer in January 2012 followed by 15 Feb - Mastectomy, chemo, radiation. Not a pleasant journey but sooo happy that I am here to tell the story. And life is good. There is always someone worse off and I just love waking up in the morning and being here feeling well.

    By the way I was told by my oncologist Prof Beale that doctors use to treat MS patients with chemo. I have been OK off medication still by chemo 2012 not a pleasant way to help MS but if it works. Have you ever heard of this?

    My other concern that I wish to make everyone aware is breast cancer, not sure if the medication that is given to MS patients has anything to do with it or not BUT I have come across numerous people with MS that now have had breast cancer. I was told that the meds taken by MS patients suppresses your immune system and therefore you are more susceptible to getting other deceases (cancer) Have you heard of any connection ?

    I Am interested in your thoughts.

    Keep on doing exactly what you do. MS definitely opens your eyes to new possibilities!!! Live life to the fullest!!

    Live simply.

    Love generously.

    Care deeply.

    Speak kindly.

    Leave the rest to God.
  • angelami  May 6, 2015 7:00 AM
    Thank you for sharing this! I at the point with my MS that I needed to know that someone else had feelings regarding MS like my own!
  • Lynn Garman   May 6, 2015 7:40 AM
    Thank you for posting this Stephanie. My daughter who has MS is a real trooper with her condition. She has started to be more active in her own MS Group & has gained a lot of knowledge on her research. She in fact diagnosed her own condition after years of Doctors not knowing why she kept getting the same illnesses. This blog has inspired us both ,& lot more young people have joined the local group & I feel she has a lot to offer them with what she has learnt.
    I have a theory about the cause of MS especially as there seem to be so many people of her age who have it here in Andover Hants UK. Could it be connected to Immunisation as babies being given something from the injection that has hibernated in their immune systems & attacks the immune system as adults. Possibly triggered by a virus or shock!!! My Joanne was especially poorly after a whooping cough jab.!!
    All just theory I know but has anyone researched this to your knowledge.

    Yours Lynn Garman
  • sue worden   May 6, 2015 8:40 AM
    I was told I had MS one day before I turned 40, which was 11 years ago. My doctor came In and said I hate to give you such devastating news just before your birthday but you have MS. He sent me to a new neurologist and he was a bumbling idiot. He told me yes uou have MS, told me to go home and get on the Internet and figure out what drug I want to go on. I said isn't there 4? I came home and found out that yes, there are 4 shots. So my next appt I told him there are 4 and can he tell me what if any benefits are there from one or the other. I said each drug I researched said they were the best. He said after reviewing my MRI he no lo onger feels I have MS. We went out and celebrated. Then a week later he called me into his office and says he had my MRI mixed up with someone else's and now he says yes I do have MS. So of course we were right right back to where we were before. I called my primary doctor and told him he had better find me a new neurologist or Im thinking of suing both of them. So he put me through to the head of neurology as t MSU in East Lansing. She was wonderful, she spent almost 2 hrs answering my husband's and my questions. She told me what she thought what shot would be best to try first and if I had problems with that one what one we would try next. I went on Betaseron and after being on it for almost a year I strated getting cellulitis in my left arm.im now on Avonex and things are going well. I have mini problems but nothing like the "nay" sayers said I would. I did daycare for a nurse and she said within 2yrs I will be in a wheelchair. I think I have heard so many bad stories from so many people. One of my best friends says told me she couldn't stand to watch me go down hill WITH MS so she wasn't going to be able to be around anymore. She ended up calling me 2yrs later saying she was diagnosed with MS in her spine. She told me that she got it from me. I told her you can't catch it like a cold.
  • John   May 6, 2015 8:48 AM
    Stephanie - Thank you so much for sharing your story. It give everyone hope for the future. You might be interested in looking at leading edge research at http://www.myelinrepair.org/
  • Bill Morgan   May 6, 2015 9:04 AM
    Wonderful TED talk! Thriving certainly be challenge and we march forward. Since being diagnosed with PPMS 5 yrs ago my demon has been constant worry. Not about MS, the gradual loss of function is a constant companion, but what life will throw next. Keeping active with church, men's group and physical therapy has me moving forward but I have yet to find a new passion after diagnosis. Thanks for the inspirational talk I know the challenge well.
  • Caroline, Girl with MS, Craven   May 6, 2015 9:18 AM
    Thank you for sharing your story! I was diagnosed in 2001. So nice to see all the new research and support out there. Keep up the great work!
  • JoAnne McCormick   May 6, 2015 10:28 AM
    I was diagnosed in 1987 at 34 years of age, have lived with it with about 1 incident per year, followed by an IV solumedrol treatment, and have transitioned to secondary progressive about 7 years ago. I have 2 children, now 22 and 25 years old (after DX) and have always tried to be pro-active and participated in clinical trials for new drugs. I am currently in a double blind clinical trial at UCLA for a drug for progressive MS that will not finish for 2 years. Thank you for your effort in getting the word out so eloquently! At 61 years of age I still participate in an exercise program focusing on neurologic weakness. I feel ATTITUDE IS EVERYTHING! Let me know if I can be of any support to you. Thank you, Sincerely, JoAnne
  • Kimberly Krouskop RN, BSN   May 6, 2015 1:15 PM
    Finding this article came at the perfect time for me. I am on the cusp of deciding a new treatment, as I too have failed all of the medications available since I was diagnosed at 26 years old. Lemtrada has been approved, but the side effects are scaring the heck out of me. I needed to be reminded of that spark and fire that this disease isn't going to take me down. I do miss, I have to admit, my short term memory though.
  • Mary Sprute   May 6, 2015 2:51 PM
    Stephanie - Thank you for sharing your story. I wish there was someone like you available 15 years ago when I was diagnosed with PPMS. You are an inspiration.
  • Sonia Carter   May 6, 2015 5:51 PM
    I was just officially diagnosed. I don't see it as the worst thing in the world. I had rectal cancer two years ago so I'm not scared. I guess I'm happy o finally know what has been going on with my body. Now I'm looking for information which is how I found this site. Knowledge is power and I'm going to find out as much as I possibly can.
  • Tom Ramsey   May 6, 2015 8:38 PM
    Stephanie, Thank You for sharing your life story! You aee amazing!!! Your life experiences sound so scary-similar to mine, starting with the strange/wierd numbness in 2005. I still have some of the sensations, but have learned to compensate for most of them. I was on Avonex 2006 through early 2012, Tysabri March 2012 through Dec 2014, and Aubagio since Dec 2014. I have not had a relapse since 2012, but tested positive for the JC virus last November. Since my diagnosis and early personal denials, I decided to fight back the best way I knew how. I have strived to regain my high school weight and strengths. I have been able to work out up to 10 times per week at age 54 and strive to encourage anyone at any age to be as healthy as they can be. I try to be a leader for all of the younger people, like yourself, in HIIT and Tabata classes. My Neuro MD has invited me to attend one of his MS presentations where he will be discussing physical fitness and wants to share my progress. I am willing to share any of my health data with any MS research activities.

    Keep posting and best wishes for your wedding and your wonderful life.

    Thanks again. Tom
  • Kayce Tipton   May 6, 2015 11:54 PM
    I, too, am a registered nurse living with MS. I thrive... so much to the point that my doctor actually questioned my diagnosis. I had an exacerbation in 2007 that put that to rest but that was also my last flare. I was diagnosed in 2002... and was successfully treated with Rebif for several years. In 2008, I started in the clinical trial for Lemtrada (fka campath) i have responded quite well I think :) since I have not had any new lesion formation or exacerbations since 2007!! God Bless you and keep on!!!
  • Millie Rodriguez   May 7, 2015 6:12 AM
    I can relate. Things do not get easier but you learn to cope, like you I met MS in my 20's. I am almost 50 and have four beautiful children. Thanks for lifting me up.
  • amr2011  May 7, 2015 1:40 PM
    Thank you for doing this Stephanie, up until now I've had MS for 4 years but only really found out what this is and what the implications are this past year. Of course this can be explained by the fact that I just turned 20 and my doctor and father did what they could to not give me a diagnosis. So due to this the fears and the crying that might have come earlier hit me for a while and without my friend I might not have made it through it, and of course like you said the effects of the disease are invisible.Therefore no one, except that friend, knew anything but thanks to him I managed to pull through. Now I've started to feel a drive to fight this and to do my best to enter research related to MS and I hope that I follow through with this.
  • Laura mills   May 7, 2015 8:56 PM
    Thanks so much for your talk!
  • Donna Pioli   May 7, 2015 11:15 PM
    Thank you for sharing your story. I enjoyed your story. You left me feeling
    Happy instead of saddened,by your dx. Of course I am not happy you have MS, but I am glad about your attitude. As you know it makes a huge
    Difference!
    I haven't done all that you have but I do try to be happy and reach out to others. I live in assisted living so there are lots of people with many kinds of problems. I like to have a kind word with as many,as I can, at least give
    A smile. I guess it's helping because my husband told me that people tell
    Him all the time, I just love it when your wife goes through the dining room
    With her beautiful smile. Little things help too. :)
  • Millie Rodriguez   May 8, 2015 9:46 AM
    thanks for lifting up our sprits.
  • Vanessa   May 10, 2015 3:15 AM
    Stephanie, thank you! I wish you every good thing that comes your way. I too have MS and am blessed to have many more good days than bad. Reading your story at 430 am has motivated me to get up and draft a few letters to a few folk (our local $$$$) who can and are looking for an opportunity to support and fund MS Research. I look forward to hearing your more from you. THANK YOU!!!!
  • Helen   May 11, 2015 9:28 PM
    Wow Great Presentation !
    😀😀😀😀😀😀
  • Helen   May 11, 2015 9:28 PM
    Wow Great Presentation !
    😀😀😀😀😀😀
  • Helen   May 11, 2015 9:28 PM
    Wow Great Presentation !
    😀😀😀😀😀😀
  • Akisha Bowens   May 19, 2015 8:56 PM
    Thank You Stephanie for your courage and strength to tell your story. I am newly diagnosed. Living with MS for 12 days. I'm scared, nervous and don't know what to expect. Like you I feel like life as I once knew it is over, and I am stuck in a nightmare and can't wake up. I tried to return to work, but my body is not willing.
  • Leanne   May 21, 2015 8:23 AM
    Your story is an excellent example of how so many MS patients are transforming their perspective of MS to aid others, and ultimately to integrate their experience of this illness with a positive vision of their own future(s). As such, you are providing hope and inspiration to countless others, myself included. Thanks for this :)
  • beth   May 27, 2015 6:47 PM
    Thank you for sharing. I am looking forward to reversing my issues. Through diet, etc..
  • Lloyd   Jun 13, 2015 3:56 PM
    Hi Stephanie:

    Great stuff on paper. That said, how in the world can an EX avid cyclist and runner and overall sports enthusiast possibly thrive with a sentence of PPMS?!!? Just not happening!!
    Thanks.
    Lloyd
  • Melissa Schwander Doyle   Jun 14, 2015 7:35 PM
    Hi Stephanie
    I congratulate you on all your accomplishments. I was recently diagnosed with RRMS in November 2014. As we speak I'm having severe symptoms and having MRI tomorrow. I am on Copaxone and this is my first episode since the one in November. I am a L&D RN and if there is something I can do to help I will. I was a performer and I'm a good speaker so let me know if I can help or connect me with other RN's. The last five months have been hell emotionally, I need motivation and inspiration!!
    We can fight and thrive,
    Melissa Doyle BSN, RNC-OB
  • Gina Weathersby   Jun 21, 2015 6:05 PM
    Stephanie,
    I applaud your efforts in fighting to help us in the fight of MS. I was diagnosed with Relapsing Remitting MS 25 years ago. I also refused to give up. I went back to school and received my degree in 2008. Now I am a published author of a book called the"Miracle Survivor Through Multiple Sclerosis." This book tells my story of life living with the disease. I had no one to tell me about MS. I hope it will help some one who has questions so they won't feel alone like I did. Thank you for sharing your story.
  • Lizelle   Jul 22, 2015 12:34 AM
    Wow. Your article really inspires me ! I am 26 years old and am currently trying to reach my goals of becoming a nurse. I am actively involved with the MS society and sit on the Government Relations committee, connect with other volunteers in a Knowledge Network group and also partake in the walk for MS every year in my division. My dream goal is to work as a Public Health figure to spread awareness of this unpredictable disease. My life revolves around MS and I am constantly wanting to learn more about what I can do to achieve my goals. But like you, over the last couple years I have faced different realms of adversity. I am ready to get back on my feet and fight for what I believe in. You inspire me and give me hope for the future :)
  • Jeremy Schuster   Oct 15, 2015 6:11 AM
    Informative and Inspiring.