Don’t Be Afraid to Share Your Story

Three years ago today, on March 15, 2016, I was diagnosed with Multiple Sclerosis. Every year on this day I take time to reflect on where my life has gone, what I have accomplished, how my disease is progressing, and what I am hoping for my future. I feel like most people usually do this on their birthdays or maybe just on New Year’s Eve (the typical measures of the start of a new year), but for me, my life was divided into two distinct chapters – before MS and after MS. So the day that I was diagnosed has become a measure of survival to me in a way. I celebrate this day because I am proud of myself for still being here, still fighting against MS, and helping to fight for others whose voices are perhaps not as loud as mine.

In anticipation of writing this post, I sat down this morning and reread my previous two diagnosiversary posts. (This is probably my favorite part of writing; being able to go back and REALLY see how I felt on a particular day. Sometimes your memory of things gets blurred over time, especially when you have lesions on the brain!) It’s amazing to think about all the ways my life has changed in the past three years and I could write a novel on all the things that happened (it’s on the bucket list actually) but as I reread both of those posts the thing that stuck out to me the most was the hopefullness that I have been able to carry with me throughout these past three years. When it felt like NOTHING in my life was going according to plan, I fought hardest to remain hopeful that my future would be happy and successful. THAT is what got me through to today.

But trust me, that was NOT something that came easy to me, or something that stayed steadily with me every single day over the past three years. While I know that the hope has always been a part of me, some days it was visible right there in front of my face and other days it was buried so deep down it took multiple amazing friends to help me dig it out. That’s why a support network is so key with MS, or any chronic disease really; you need people who are there to help, to fight for you when you don’t have the energy to fight for yourself – because MS ran off with your energy several days ago and is nowhere to be found!

People don’t like to talk about those days. I don’t blame them; neither do I. In fact, I typically don’t. On my bad days, I stay home; partly because it’s the right thing for my body, but also because I don’t want the world to see me on my bad days. I want the world to see me as a Warrior! I want them to see (and remember) the mountain climbing, cross country driving, new business starting, MS advocate, strong, healthy, MS can’t stop me now version of me!

That version of me is great, and I like her ALOT, and she’s fierce, and I’ve worked VERY hard to keep her around following my diagnosis, so it makes sense that I would like to show her off. But sometimes when that version of myself is all I’m putting out to the world, I wonder if I am doing other MS Warriors a disservice; am I feeding into the stereotypes behind “invisible illnesses” in hiding my bad days from the world? Especially in these post HSCT days, when it brings me so much joy to tell everyone how great I feel; am I being dishonest by leaving out the painful or not so smiley parts?

Putting yourself out there is hard, but the rewards that can be gained from it are life changing. That sentence pretty much sums up my third year with MS. Not only did I take a big risk in undergoing HSCT but I took a huge risk in putting my story out there and shouting my experience from the rooftops, in hopes that someone else out there, someone who was like me and searching desperately for a better treatment option, would hear about HSCT and have their life changed for the better too! I knew I wanted to pay it forward as a way of thanking those patients who went before me and educated me on the process. I would have been LOST without my stem family!

Knowing that I could use my story to help others gave me the courage to put myself out there. As I prepared for my HSCT journey to begin, I was eager to tell everyone and anyone willing to listen about this life changing treatment. And I hadn’t even gone through it yet! I felt compelled to tell my story because nobody knew about HSCT. Ok, well maybe 90% of people at least didn’t know was an option; and those that knew about it believed myths about it that were scary and untrue.

The majority of the questions I received came from my fellow Warriors via the support group I help run on Facebook. The curiosity, intrigue, and support these people offered me was unparalleled. And in return, I gave them the no holds barred, patient eye view of what it was like to receive HSCT. The support I have received over the years from this group gave me the confidence to share EVERYTHING with them. Especially because they are fellow Warriors, they “get it” because they have it too! There is a level of comfortable among us that you just can’t get from those without a chronic illness. At the time, I had no idea how many people would watch those videos and choose to pursue HSCT; but I figured if I could educate just one person, then the treatment would be a success; even if it failed in giving me my health back. Sharing my story made it worth it, no matter what the physical outcome turned out to be.   

I am often asked, “what was the best thing you gained from having HSCT?” Most people, I think, are expecting me to tell them something physical. For example, that my eye sight is now back to 20/20 or that I can walk LOTS of miles in a row without getting tired. Those are both FANTASTIC improvements and things I couldn’t have said three years ago. But the VERY best part, is by far, the relationships that I have made with the people I’ve connected with through this program; my “stem family.” These people are some of the most incredible, inspiring people I’ve ever met and I gain my strength from them more every day.

There are the handfuls of people that I’ve had phone call with about the application and treatment process, and video conferences with their spouses to try and help put their minds at ease. There is the amazing Warrior who I accompanied to her evaluation, hugged her as Dr. Burt excepted her into the program, and helped her fight her insurance company to overturn her initial denial. There was the brave Warrior I met in the waiting room that very same day, and visited on the day of my one year appointment with Dr. Burt, who gave me chills as I saw myself in her position just one year ago. There was the incredibly humble guy who I helped write his appeal letter after a review board denied his request for transplant…twice; he’ll be receiving HSCT this spring. There’s the team of other HSCT veterans who are joining together in hopes of educating society about HSCT and spreading awareness worldwide. The list goes on and on…

I never would have met any of these people had I not opened my mouth about my treatment. I never would have found out about HSCT if I had not been willing to go public with my MS journey. It is amazing the things that can happen when you are willing to share your story; all of it; the good, the bad, and everything in between.

Putting yourself out there is hard, but the rewards that can be gained from it are life changing.

It took me awhile to become comfortable enough to share ANY part of my story, let alone the most vulnerable parts of it! While I am now comfortable sharing my Warrior story with the world at large, I am still hesitant to admit to the normies when I’m having a bad MS day. I have made incredible progress in being open and vulnerable with my fellow Warriors, but still struggle to show them my weak moments because I always want to be “strong and inspirational.”

So in recent months, when life got tough, instead of reaching out to my support system, I instead have found my retreating; hiding from sharing my post HSCT bad days and feeling guilty on days I was feeling less than Warrior like. And it was right about the time that these thoughts were really starting to overcome my brain, when in walked Selma Blair down the red carpet at the Oscars, cane in hand, a bit wobbly, and when overcome by emotion…straight up bursting into tears saying “You have no idea how hard it was for me to come here!” Right then, in that red carpet photo op, I was convinced that she was the strongest woman I had ever seen. Rocking her cane down the red carpet like it was her own Warrior badge of courage!

Then I watched Selma’s interview as she spoke to Robin Roberts on Good Morning America, her voice so affected by the MS flare she was experiencing at the time, at times it appeared visibly difficult for her to get her words out. She stuttered, she stumbled, but she smiled the entire interview. She struggled and I cried as I watched her speak. I cried not because I was sad or felt bad for her, hell no; I cried because I was so frickin proud of her. I think I may have even yelled at my TV, “YOU GO SELMA!!!” through some pretty ugly tears. She was doing what so many of us Warriors struggle to do; she was sharing her bad days. She was wearing her MS on her sleeve with no shame, in the hopes that it would educated the national media. Watching her have to put forth so much effort to tell her story, I realized that I was doing myself and every other person with MS an absolute disservice by keeping my mouth shut. By hiding my bald head under a wig. By staying home on days that my walking is slow. By not admitting when I’ve overdone it and need a rest. By smiling when I feel like I’m crumbling inside. By telling people I feel great when I’m struggling to keep myself together. By hiding my MS on days that I’m fortunate enough for it to remain invisible.

Putting yourself out there is hard, but the rewards that can be gained from it are life changing.

While I know that I have come SO FAR in my journey with multiple sclerosis these past three years, I know that I still have a lifetime to go. While I am truly blessed to be able to say that my disease progression is in remission, I still have symptoms that remain from the old damage done before I received HSCT. I still have bad days when I’m not climbing mountains and running around the park with my niece and nephew. I still struggle with the “what if” thoughts of my future, and fear that my disease will come back fiercer than ever one day. But I now realize that having days like this, or even weeks like this, does not make me any less of a Warrior. In fact, I am not positive that admitting your faults and your bad days is oftentimes the very hardest part of being a chronic illness Warrior. But we all have them; and in the words of a kick ass fellow Warrior, “You can’t do it all. It’s fine to feel really crappy!” Thank you Selma Blair for reminding us all that our bad days made us STRONGER.

On August 19, 2018, I experienced two life milestones. I celebrated my six month stem cell birthday and spend the last night ever in my childhood home. (More on that part later!) It was a day of nostalgia and reflection unlike any other.

For those of you reading this who don’t know what HSCT is, it stands for Hematopoietic Stem Cell Transplant. Unless your a medical professional, you probably still don’t know what the heck that is. Right?!?! Well you can spend hours Googling it, or you can continue to follow my blog in the coming weeks and I’m going to give you all the gritty details – the good, the bad, and the ugly. Putting it in the most basic of terms, HSCT is a process by which your stem cells are removed from your body via your blood, chemotherapy is pumped throughout the body to destroy your bad/unhealthy immune system, and then your stem cells are re-introduced into your bloodstream where they “reboot” or “grow a new immune system” for you; one without the memory of multiple sclerosis. The overall goal and intended purpose is to halt the progression of the patient’s MS; some patients are extremely fortunate and even see improvement of their existing damage and/or symptoms. I am one of those extremely lucky patients. Yup, my MS luck has FINALLY turned around!

Six months post HSCT I am beyond grateful to report that physically I am feeling amazing! My body hasn’t felt this strong in years. While I do still have lesions throughout my brain and along my spinal cord, they are no longer actively progressing and attacking my body. For the past three years my immune system has been in a constant war with my body and although some days I might have won the battle, I always knew that on the inside MS was winning the war. Not anymore! For the time being (and fingers crossed for a long time to come) my MS has waved the white flag. Surrender! Victory is mine! It has FINALLY stopped fighting back thanks to Dr. Burt. I still have symptoms caused by the old damage that remains but the improvements in my overall quality of life have been better than I ever expected.

People always ask me, what (if any) of my symptoms have improved since transplant. Better question, I tell them, what HASN’T improved?!?!? Answer – NOTHING! Yep, that’s right. ALL of my symptoms have shown improvement! Not 100%, but I can say with confidence that some have recovered 95%!  For example – things I can ACTUALLY DO NOW that I couldn’t do one year ago:

1. Ride a bike.
2. Walk a block in heat without my legs going numb.
3. Wear high heels.
4. Spend an entire day watching my niece and nephew.
5. Walk my dog around the block without pain in my legs.
6. Work a full day AND have enough energy leftover to make dinner evening.
7. Shower without having to lay down afterward.
8. Emerge from a hot shower with clear vision.
9. Drive distances greater than 10-20 minutes.
10. Go to bed with confidence that I would be able to get out of it the next morning…

Let number ten sink in a little. That is some scary shit! The lists goes on but I think you get the idea. This treatment was life changing for me. Some days I even feel like I don’t have MS anymore; I feel like the old me! But in fact, it’s better this time, because I have a new appreciation for it all. Despite everything I have been through, I consider myself one of the luckiest people in the world. I’m going through life with my eyes wide open now and I didn’t even realize they were half closed to begin with. Until I got optic neuritis and ACTUALLY went half blind that is.

In a recent post I talked about how I’ve been a little off the grid lately trying to figure out what my next steps are. I’ve conquered my MS diagnosis, dominated HSCT, and now….what? I told myself that if I was given this second chance I absolutely would not waste it. I can’t waste it!

A few months after being diagnosed I found myself alone in a world surrounded by people who, although they had the best of intentions, could not understand what I was going through. With MS you really don’t “get it unless you get it”. And I didn’t know anyone else that had it. I went in search of a local MS support group but I found nothing. I looked in neighboring areas and still found nothing. Where were all the people that showed up for the MS Walks?!?! I was so lost. Thankfully, in this age of technology I found an amazing MS family on Facebook whose support, encouragement, and love changed my life. These people saved my life long before HSCT did. These people are not just online friends, they are my family. Many of whom I have traveled great distances to meet in person.

MS can be a lonely disease no matter how incredible a support system a person has. You can never have too many people in your corner.. I’m always looking to add people to my corner and I love being able to be the loudest one cheering in someone else’s. Everyone who is diagnosed with MS should be able to find support if they have the courage to reach out. It’s time to get that local support group together! You’ve heard the saying…”if you build it they will come” right? Well I’ve been talking about forming a support group for over a year now and who knows how long it’s been needed in my area! It’s time to start answering the…”NOW WHAT?” question that I’ve been asking myself for months. Before I started HSCT I created my Bucket List. For every item I cross off I try to add something new. Today I’m crossing off Item Number 6 – Start a support group for people with MS. Starting this group is really the accomplishment of several goals – paying forward the support I’ve received, following through on a goal, and adding another experience to my life resume.

Now, what to add to the Bucket List in exchange for checking off this box? Besides the obvious – find people to actually COME to this super awesome group of course! (Feel free to spread the word!) As my advocacy for MS and HSCT continues there are going to be many more life adventures coming my way. HSCT has given me a new hope for my future and I look forward to sharing it with you!

 

At the beginning of August 2016, I had just escaped the hospital for the third time in as many months and I was less than two weeks away from the biggest day of my life; my wedding! Most people know that I married the love of my life on August 16, 2016. Exactly five months after the day I first lost my ability to walk, I took the most important steps of my life; down the aisle towards the man I would spend the rest of my life with. As we approach our two year wedding anniversary this weekend I find myself feeling a little nicer to my MS. And believe it or not, I’m thanking MS this weekend for having given me a very special gift. Let me explain…  

What most people remember about my wedding day was the rain. Oh my god did it rain! No, it monsooned! Our outdoor ceremony was moved inside but it was a beautiful day never the less. Along with the rain there were the typical wedding day blunders; a missing bridesmaid bouquet, a set of lost place cards, my stepdad running late delaying the start, and the wedding photographer from hell. Oh and my personal favorite moment, when I confused my own name during our vows!!! Following my brother in law’s instruction to “repeat after me: I, Julie, take you Jimmy,” I instead blurted out “I, Jimmy, take you Julie…oh wait…crap…I’m not Jimmy, I’m Julie! Let me try that again.” Everyone sure got a good laugh from that. I guess I was more nervous on my wedding day than I realized.

To be honest, I remember being distinctly surprised at how nervous I was as I stood with both my parents waiting to walk down the aisle. I was nervous about making the actual “walk”, not the lifelong commitment that awaited me at the end! After all, what was there to be nervous about? Technically I was already married!

Yup, you read that right! August 12, 2016, was actually the date of my second wedding. However, I’m still on my first husband. And I’ve never been divorced. Confused yet? Blame MS.

I don’t mean that in your typical “blame MS” negative, sad pouty face, kind of way. Instead, I suppose it’s more appropriate to say “thank MS.” I don’t actually get the opportunity to thank my MS for things very often so when I find a reason to be grateful for this crap disease I really try to embrace it. Without a doubt, the list of MS pros is monumentally shorter than the list of MS cons, but in my life it helps that at the very top of my list of MS pros is the date of May 1, 2016; the day I married the love of my life for the FIRST time.

I was never really the girl who grew up dreaming of her wedding. In fact, once I was actually old enough to consider marriage, I decided it didn’t really sound all that appealing to me! However, in the event that miraculously someday I found a man that I thought I could spend forever with, I decided that I would have to have two weddings. Yup, two weddings! Sound crazy? (My husband sure thought so when I told him this a few months into us dating!) But to me it wasn’t crazy, it was my only dream when it came to getting married. Plus, I have always had a tendency to go against the norm. Gone are the days where it’s true that “you only get married once.” So why should you only get two weddings if you get a divorce in between? Instead, if it’s “the best day of your life” why not celebrate it twice?!?! But the main reason; I had my heart set on being married in two different places, so it was also a matter of logistics.

I grew up spending summers at my family lake house in Indiana. At the cottage there is a beautiful side yard overlooking the lake where I have spent some of the happiest days of my life. I wanted this spot to be the place that I celebrated THE happiest day of my life! It’s a scene I had imagined a thousand times, I had just never had been able to imagine the man standing there with me. Until now. Just a few months into dating my husband I knew that he was the one. I started imaging that lake wedding, with my brother in law as the officiant, marrying us at sunset on the lawn of my grandparents’ lake house. A small ceremony with just our parents and siblings; a truly symbolic joining of families. Then a month or so later we would have the big reception party in Chicago and invite everyone. Sounds amazing right? It absolutely would have been! But as usual, my MS had other plans.

Since my diagnosis I had been doing battle with my insurance company to get them to cover my medications, hospital visits, and doctors appointments. That was still convinced that stupid company was responsible for my third relapse thanks to how long it took for them to approve my medication. For those of you who have ever done battle with an insurance company, you know that this is no easy feat! It is a highly frustrating process that becomes very emotional when you are being given the run around on a daily basis. I can’t tell you the number of times I lost my shit to the representative on the phone. And my insurance company was a special kind of terrible! I swear their goal was to make things SO difficult that I would just give up and leave them alone. However, super husband’s insurance company was the BEST….awesome coverage, wonderful representatives, made me feel like a person instead of a patient number! 

Two years ago I would have been telling you this story all about how, once again, my MS took something in my life away from me. After my first hospital stay and battle to get my medication approved I knew I needed a better insurance. But if we waited for the Lake wedding I was risking two extra months of miserable insurance coverage. (And potentially another relapse!) It was a choice between making the grown up decision and being responsible for my health versus my little girl dreams of being married at the Lake. Technically, I guess  I had a choice; but I’m not an idiot. I value my health over everything. Sorry, little girl Julie.

For awhile, I admit, I wallowed in my ruined image of my sunset wedding at the lake. However, after dealing with the initial blow I reminded myself that I was supposed to be on this new journey for hope; no part of which included sitting around feeling sorry for myself! I had been working hard to improve my mindset, (spoiler alert – it’s actually working!) and looking back it’s easy to see that my first wedding was an incredible example of how your perspective and mindset towards a situation can impact its outcome.  

At first glance, my first wedding was everything I had NEVER hoped for. I never imagined that after spending a year planning the wedding of my dreams I’d be throwing together a quick ceremony in just a few weeks. I never imagined planning a wedding around hospital stays and MRIs. I never imagined not having my best girls as bridesmaids standing by my side. I never imagined not having a photographer, a DJ, or a bunch beautiful flowers surrounding me! And I CERTAINLY never imagined that a wedding that included NONE of these “important” things would be the absolute happiest and best day of my life.

After I got sick there was no question that the sooner we got married the better. While most people might have simply gone to the courthouse to get legally married (and in fact my husband suggested this) I absolutely refused. I practice law and have handled my share of divorce cases, so in my eyes the courthouse is where marriages go to die, not to be started. It seemed like bad luck. I knew I wasn’t meant to get married in a courthouse. Hell no! ANYWHERE but the courthouse. We needed a wedding venue as sentimental as the lake house with the practicality of the courthouse. Despite how impossible that sounded, I remained hopeful we could find a solution.

I googled, I made phone calls, I scouted out parks, I drove my husband insane looking at possible wedding venues available on a few weeks notice that cost basically nothing. It’s pretty slim pickings out then when you have such strict criteria for an impromptu wedding! It might have actually been impossible had it not been for the most amazing lady I know; my Mother. Thanks to her my first wedding was the most incredible day of my life. On May 1, 2016, she hosted my little wedding in the living room of her house (because of course it rained that day too!); my childhood home. It was everything I had NEVER imagined and more, in the best possible way.

I never imagined I’d get married in the living room of my childhood home, almost tripping on my dress walking down the same stairs I did for senior prom, wearing my little sister’s high school graduation dress, in front of just our parents and siblings, with Portillos chocolate cake and a champagne toast to top off the celebration! My Mom decorated the house with flowers that matched my wedding colors and she even got me an amazing bouquet! It was a wedding that truly reflected my husband and my personalities. It was perfect. It was MORE than perfect. It makes my heart smile every time I think of it.

I have MS to thank for this perfect moment. Now, two years later, my Mom is preparing to sell my childhood home and I have lots of great memories in that house, 31 years full of them! But hands down, Wedding Day #1, will always be at the top of my list.

“Happiness is what you make of it; always has been, always will be.” It wasn’t the Lake wedding I hoped for, or the big wedding I planned, but it was exactly the wedding I didn’t know I wanted. So thanks MS, for FINALLY doing me a solid and giving me a win!

 

If you’ve been following my blog since I launched back in March you probably noticed that I have gone radio silent for the past month or so. But I’m still here! I am sorry for my absence and I want to explain. I initially intended to write this post as a sort of apology, to my audience, for beginning a story, getting you hooked (hopefully!), and then leaving you hanging right when things were about to get juicy! That was never my intention, I promise! But if you’ve learned anything from reading my story thus far, you have probably picked up on the fact that my life doesn’t usually go as I planned.

You see, the entire purpose behind this blog is to tell my story and raise awareness for MS and HSCT. I planned to tell my story in hopes of educating others and sharing my experiences, and my hope for a healthier future. However, I recently came to the realization that it’s very hard to write your story from start to finish when you are still very much in the middle of the most exciting chapters! I’ve been so busy being out in the world, living my life, gathering experiences to fill those chapters, and all the while my computer has been sitting on the shelf gathering dust. The other issue I was having when it came to writing was that even when I was sitting still, I had ZERO desire to mentally take myself back to two years ago and revisit those very rough MS days; which was necessary for me to do if I was going to continue to share my story in this neat, organized, chronological fashion that I had planned when I set out to do this. 

Every time I tried to put together a post, or even just a few solid sentences, my mind would go off in its own world. A world where it was half blank with nothing to say, but the other half so full of ideas to express it wanted to explode. I was stuck, once again, in very unfamiliar territory. I realized I needed a new game plan. What the hell was I thinking trying to create something “neat and organized” that is centered around MS; the most unpredictable disease on the planet! I knew better than this; my experience with MS taught me better than this. I’m blaming the chemo brain for this lapse of judgement!

I needed to learn how to live the story while I was writing it; to marry the two versions of myself into this new person I was becoming. In hindsight, it seems such an obvious realization but it smacked me so hard in the face that I didn’t know what to do to begin figuring out my next steps. So I went to the one place in the world always guaranteed to relax my mind; my family’s lake house in Indiana, a.k.a. My Happy Place. I intended to run away just for the weekend but once I got there, the lake air consumed me into it’s relaxing bubble, and the next thing I knew it was almost three weeks later before I (reluctantly) returned to Chicago.

I do my best writing when I’m relaxed and in my own bubble. But even there in my Happy Place I was struggling to find the right words to continue my story. I realized as I was writing, trying to explain how I felt a year ago, that my experiences had changed me, not only physically, but mentally and emotionally too. I wasn’t seeing things the same way I had when I began this journey. I went into HSCT with a precise plan; get my stem cells, build my new immune system, allow ample recovery time, and return to life as I knew it before my diagnosis. That was best case scenario. But I also knew there was a strong possibility the plan would change. Or have to be adapted in some way. So I never allowed myself to look TOO far into the future, just in case it all came crumbling down around me.

Before HSCT, when I closed my eyes and pictured my future, it was all I could do to imagine myself walking, with my husband and future children, on a hot summer day, without pain, with my MS so many years in remission that I’ve almost forgotten it was ever there! That was my picture of the perfect future. It was a single snapshot in my head, a moment in time that I held out hope for. 

One year ago, I believed that was impossible. Six months ago, although I then did believe it was POSSIBLE, it seemed like such a lofty dream that I considered it a one in a million chance. Plus, given my experiences with MS thus far, I never dared to let myself imagine my life any further than that snapshot moment. To me, getting to that moment and making it a reality was about as likely as winning the lottery. Sure, I would fantasize about all the things I’d do with the money if I won, but I never called Belmont Harbor to reserve a boat slip for the yacht I intended to buy with the winnings. It was a dream; the details were not important. 

It was a similar thought process when I actually allowed myself to picture my future. I couldn’t imagine the house my husband and I would live in or the job I’d be working at. I couldn’t picture my future kids’ graduations or their weddings; let alone the birth of my first grandchild. No matter how much hope I possessed, with the progression of my MS, it was highly unlikely (the closest thing to impossible actually) that I’d be dancing at any of my kids weddings. It was a bitter pill to swallow at first but with every day I was growing more accepting of my illness. Don’t get me wrong, that in NO WAY meant I that was surrendering to it. I was instead learning to accept my new normal; at least until I could find a way to change it.

Today, I know that this dream for my future WILL become my reality. I am confident of it. I am so confident, in fact, that I have begun to imagine what my reality will look like beyond that snapshot in time!

In true MS form, with all its unpredictability, just as I was starting to make some sense of this MS crap, I came across a new treatment that doctors said could be “life changing.” Just as I was becoming fully aware of the fine line between controlling my MS and my MS controlling me, I found a doctor who said he had a way to “halt the progression” of my disease! Imagine how shocked I was to hear this when I had spent the past year being told by every other doctor I saw, that all they could do was TRY to SLOW it down; but that the progression was inevitable. While I was still fighting everyday to remain hopeful; I was realistic about my future and the limitations I would develop because of my MS. It wasn’t a matter of “if”, is was simply a question of “when” I would get worse. And I was handling it the best I could.

That all changed the day I learned about Dr. Richard Burt; the man, the myth, the legend; the man who saved my life. He offered me a treatment that he claimed would do something that NONE of the other drugs could do; it would fight BACK against my MS. It would STOP the disease progression, instead of just slowing it down. Heck, if I was REALLY lucky, some things might even get better!

On May 3, 2017, when he looked at me in his office during my evaluation and said “yes, I think I can help you. I’m doing to offer you this treatment,” my life was turned upside down for the second time in two years. Finally, a doctor with a “can’t stop, won’t stop” mentality who wanted to fight my MS as aggressively as I did! He was telling me not to settle for the life MS had recently promised me. He was giving me the hope I had been desperately searching for. He warned me of the potential risks.Yes, he made it very clear that the side effects of this treatment could be fatal. I looked him straight in the eye and said, “Yep. I know that and I’m ready. Let’s do it.” He assured me that he would be there with me every step of the way. Though I was scared out of my mind, happy tears streamed down my face as I began to imagine a life free of disease progression. 

In a way, from that day forward it all became a blur. All of a sudden my life revolved around HSCT. Getting insurance approval, stopping my medicines, taking time off work, doctors appointments, MRIs, lab work, fertility appointments, etc. Life as I knew it (which I was STILL trying to figure out, mind you) went out the window. As the days went by things started happening and falling into place in a way I never imagined. Sometimes I felt like I was barely keeping my head above water, but a bigger part of me was worried that if I slowed down, for even a second, something would pop up and block my way. And right now, from where I was sitting, HSCT was the only way.

Fast forward nine months later and you know what happened?!?!?! (SPOILER ALERT!) I did it. I fucking did it! Excuse my language, but if you continue on with me throughout the rest of my journey you’ll see why this is a cursable occasion!

On February 19, 2018, I received HSCT at Northwestern Memorial Hospital in Chicago from Dr. Richard Burt and his amazing team. Mission accomplished. Job well done. Holy shit I did it. Goal achieved. I did it!!! Some days I look back and can’t believe I’m still standing and in one piece after everything my body has been through. It is true what they say; what doesn’t kill you makes you stronger.

But now comes the real fun…the what’s next? The now what?!?! Now comes that future that I never allowed myself to  imagine the details of. It’s HERE! And I don’t have a clue what I want to do with it! Or better yet, I have a million different things I want to do with it and I’m not 100% sure how to do them! Or in what order. That precise plan I thought I had has once again been chucked out the window. Going through this treatment has given my life a new value, a new meaning. I have a new gratitude for every day and a desire to make the most and do the most that I can while I’m feeling well. I promised myself and Dr. Burt that I wouldn’t waste this second chance and it’s a promise I intend to keep. But, how can I do it all of it without aggravating my now dormant MS? THAT, my friends, is the million dollar question!

It’s a harder question to answer than I thought it would be. It’s taking me longer than I hoped to figure it out. “What do I want to be when I grow up?” seems to be the question of the day, the summer, this entire year really. I feel like it’s an ironic question given the fact that although I’m thirty years old, (ok, ok, technically 31) I’m just barely six months old according to my immune system! It sure brings a new meaning to the idea of my “inner child.”

I’m trying to make sense of this “new new normal,” as I sometimes call it. (My “new normal” was following my initial diagnosis.) A friend of mine calls it “Julie  2.0”. But since I now plan to live until the ripe old age of 90 thanks to my new stem cells and be dancing at my grandchildren’s weddings, I have officially termed it my “One Third Life Crisis”. Call it whatever you find most appropriate, or entertaining, but it’s the reason for my radio silence as of late. Still, so not cool of me, I know! It won’t happen again, I promise! 

While I am still VERY much in the midst of my One Third Life Crisis I have now decided that instead of thinking this needs to be done in any certain way, I’m going to take life by the handlebars and make it whatever the heck I, me, myself, Julie 2.0, want it to be! Life isn’t neat and organized. Hell, sometimes it’s not even well thought out! It is what you make of it, and I intend to make it incredibly awesome! And so should you. Don’t wait for things to be perfect to take the next step. Live your life, even if it’s messy. Mine sure is, but so far it’s made for a pretty interesting story.

So what’s next? I’m not quite sure, that’s the fun of it! I will continue to fill in the details of my story from diagnosis, but with less rigidity and rules; and even more real. You’ll learn the story of my HSCT, from evaluation day to my stem cell birthday. I told myself when I was diagnosed that I wasn’t going to live in fear of my future with MS. I don’t anymore. Now, I just need to keep reminding myself that I also can not live in fear of my remission ending. Instead, I will make the most of the days that I have and be grateful for my second chance. I’m going to get out there and live life and I hope you’ll continue to join me.   

 

On July 17, 2016, I was discharged from the hospital for the third time. Thanks to my asshole insurance company I still didn’t have a DMD (disease modifying drug) available to me, I hadn’t worked in almost three months, my medical bills were piling up, I couldn’t grip anything in my left hand, and I had developed a very awkward limp. I was a twenty nine year old living in an eighty year olds body. During my time in the hospital I was feeling pretty hopeless. I felt like every time I tried to get a handle on my life, MS would come up and punch me SUPER hard right in the face. Try as I might, it seemed like there was nothing I could do about it. I had tried everything that I could think of, or was recommended to me, and I was getting nowhere! I kept tryin to fight my MS away but the more I fought, the harder it seemed to fight back. And so I reluctantly began the VERY slow process of accepting my MS; or trying to. But it was terrifying! I felt hopeless. Suddenly, the bright future I had always imagined for myself had gone dark. 

The worst part of it all was that in less than a month I was supposed to walk down the aisle, in front of 150 of my favorite people, and “officially” marry the man of my dreams. This was the day every little girl dreams of right?!?! Ok, I confess, I was never the little girl who dreamed of my wedding, I was busy off playing baseball with the boys! (My Dad got three daughters and zero sons!) But for the past year, I (& super husband) had worked our asses off planning, creating, and figuring out how to pay for a wedding day we would remember forever.

When I was initially diagnosed I was told by every doctor and fellow Warrior that I talked to that keeping a positive attitude and remaining hopeful was the best way to deal with this disease. They reminded me that at the end of the day there was no way to predict what the future had in store, so I couldn’t spend my days living in fear of my next relapse. Great advice, sure, but first I had every intention of fighting my disease physically. I didn’t pay much attention to the mental aspect of the fight. But finally, when I felt like I had given it all I could physically and still wasn’t seeing the results I desired, I took that advice and ran with it. I figured, what did I have to loose by trying the mental approach? Nothing else was working so far! So I started working to change my attitude; both towards MS and my new life. I actually managed to keep a pretty positive, fighting, Warrior attitude initially following diagnosis. I like to consider myself a pretty resilient person. But this MS shit was unlike anything I had ever experienced before. It was a daily battle and I was getting tired. I was getting tired already and I was only a few months into this lifelong illness. I listened to other Warriors share their experiences of living with MS for 10, 20, even 40+ years and all I could think was “how in the hell am I going to deal with all this crap for the next 40+ years?!?!?!” I was four months in and already feeling defeated.

Two weeks before my wedding I had to go to the venue to deliver a check for the final payment and go through all the last minute details. Six months ago, my biggest concern about my meeting at the venue that day was that I’d have a heart attack seeing the dollar amount I wrote on the check! (Wedding are SUPER expensive these days FYI!) However, when that day finally arrived I was solely concerned with one thing; and I would have written a check for a million dollars to make it happen! I wanted to walk all the way down the “aisle” in the awesome high heals I’d bought to wear with my wedding dress. Perhaps you’re thinking this should have been an easy task, especially if I was only suffering from minimal gait (aka walking) issues at the time. However, the “aisle” that I had set myself up to walk down was actually a 100 yard trek uphill to the outdoor gazebo where our ceremony was set to take place. This 100 yard walk would have been challenging for me even wearing gym shoes at that point, but I was absolutely determined to rock my heels down the aisle on my wedding day; even if that was the only distance I wore them for all evening!

I practiced walking around my house in those shoes for a week leading up to my appointment. Not once was I able to make it that distance without needing to stop, catch my balance, and begin again. Or worse, one time I even face planted on my living room floor. Initially the plan was for me to walk some of the aisle myself; unfortunately that didn’t happen. Then the modified plan was for me to be driven in a convertable most of the aisle, then be delivered to both my parents to escort me out of the car and down the aisle; thankfully that didn’t happen either. I guess you could say my MS and I struck a deal for my wedding day; I walked down the aisle accompanied by both my parents (for both emotional and physical support); and I don’t think any of the attendees even noticed that I struggling.

My little sister came with me to that final meeting at the venue. My eyeballs were still not the most cooperative while driving so it was common for me to need someone to chauffeur me distances more than fifteen minutes from my house. But even if my eyeballs were seeing perfectly that day; I needed her there for ALL types of support; mental, emotional, and to help me test my physical abilities on that 100 yard trek. After we were done meeting with the venue coordinator, I strapped on my wedding heels and very, very slowly made my way down the three front stairs towards the ceremony space. About ten steps in, I stumbled slightly, and my sister was right there to grab my arm so I didn’t face plant on the concrete. She quickly offered to play the role of my Dad and accompany me, arm and arm, on my walk to the gazebo. “It’s more realistic that way anyways, it’s not like you’ll be walking alone on your wedding day,” she insisted. Good cover little sister, and thank you! I quickly accepted her offer since I really didn’t want a busted up face on my wedding day. Imagine the photos…yikes!

It was a slow walk, I stumbled a couple times but never actually fell. I didn’t slip off my heels or pass out from my heat intolerance. What seemed impossible just a few weeks ago in my living room had now been accomplished! Finally, I had challenged my MS physically and felt like I had won! I managed to complete the walk pretty well that day and I still had two more weeks to perfect my skills! Hopefully by my wedding day I’d be skipping down that aisle! Ok, maybe skipping was asking a lot but this felt like a game changer for me. It was the first time my efforts in fighting against my MS seemed successful. I realized that although it had been a very rough past six months, there was still a reason to hope. Today was better than yesterday, and much better than weeks ago; so that meant that tomorrow could possibly be even better than today. I was sure going to hope so!

I started training my brain to stay away from the dark “what if” and “why me” feelings, and instead, embrace a new hope for the future. I may not have won the war against MS (just yet!) but I was finally able to win a battle and I desperately needed a win! Suddenly the uncertainty of my future with MS took a drastic turn. No one could tell me what my disease would bring in the future, so I took it as a challenge to make the most of my time. I took it as a challenge to make the most of my life before MS reared its ugly head again. There was no telling how much time my body would give me, so I chose to start fighting with everything I had; physical, mental, and emotional weapons at the ready! Watch out MS, I was ready to embrace my new normal!

Most importantly, I had chosen to remain hopeful that the future would bring me better days. That became my definition of Hope – believing that one day, in the future, life will be better than it is today. And so I developed my new life mantra – “When all else fails…choose hope.” 

 

I didn’t have to wait long for my MS to rear its ugly head again. Once all those steroids were out of my system my body was unprotected in its fight against MS; since my insurance was taking FOREVER to approve my DMD. All I could do was sit and wait by the phone… (Yea right!) I called my insurance company every single day to follow up, complain, yell, beg, plead, etc. My DMD was finally approved six weeks after I submitted my initial paperwork. Six weeks! This was my first experience with a “specialty medication”; means that it had to come from a certain pharmacy and be delivered to your house instead of just your typical run through the CVS pharmacy drive thru. Instead of a prescription, I was sent home from the doctor that day with the instructions to “keep stress as low as possible” until I started my new medication; which would happen “as soon as they heard something” from my insurance and the drug company. This “keep stress low”  was something I had been told before but really in this case it was ridiculous advice; dealing with the insurance company to actually obtain my medication was the MOST stressful part of that second relapse! So stressful that to this day, I fully blame the insurance company for causing my third relapse. Or maybe it was the fact that my MS had decided it wanted just one more hooray inside my body before it went dormant for awhile. My MS sure seemed to love excitement!

Every year I celebrate the Fourth of July holiday at my family’s lake house in Indiana. Especially given the insanity of the previous few months, I was really looking forward to getting out of town and enjoying some relaxing time with my family. Whenever I’m at the Lake all of my troubles seem lighter, smaller. The more trivial ones even cease to exist; if only just for the weekend. Not Multiple Sclerosis. I carry my MS with me every day; wherever I go. There is no vacation from MS. But I had been feeling pretty good since being pumped full of steroids in the hospital and so I even opted to head up there a few days early with my little sister. Who knows how long this “feeling pretty good” would last? I was determined to make the best of it while I could.

My sister and I arrived without incident and went to bed early in anticipation of a busy weekend ahead. The next morning I woke up still feeling pretty damn good, but with one slight change…the fingertips on my left hand were numb. Nothing else was wrong or felt at all strange in my body so again I felt more annoyed and frustrated than anything. I was not going to let MS ruin my holiday weekend. After a few hours, it hadn’t gone away, nor gotten any worse, and so I felt the need to mention this new sensation to my little sister. The concerned look on her face and her immediate response of “should we call your doctor?!?!” made me quickly realize that I needed to remain calm not only for myself but for her too.

After insisting that any call to my neurologist would be a waste of time, as it was the Friday of 4th of July weekend and I was several hours away from the MS Center in Chicago. Plus, it was just the pads of my finger tips that were feeling this way! No big deal. Compared to what I had been through in the past few months this was nothing I couldn’t handle. So I carried on celebrating the holiday weekend with my family, without any more mention of my strange new MS symptoms and thankfully with all the festivities going on everyone else seemed to forget about them too.

By the third day of our trip all the fingers in my left hand were numb from the knuckle down. It was the exact same feeling that started in my fingertips but ever so slowly it was spreading. At that point, I started trying to estimate how quickly the numbness would spread and whether I could finish out the holiday weekend without having to leave early. While I was sure I was experiencing the start of my third relapse, I wasn’t exactly sure what was going to happen next. MS is a fickle bitch like that. There is no definite way to predict a person’s symptoms or progression. You could have MS for twenty years and still get surprised by new symptoms one day. I have a very exciting and active form of the disease, let me tell you! Ultimately, this third relapse’s excitement would end in the loss of function of my left hand for about two months. Oh, and did I mention that I’m left handed? Yup! Really MS?!?!

For the next several days the numbness didn’t seem to get any worse. It didn’t seem to get any better either, but as long as it was holding steady I was not booking myself a ticket to the ER. Uh…I loathe the ER. So I waited. And each day I took note of the size of the numb area. I waited until one day I went to bed numb only from the knuckles down and woke up with my entire left hand numb. Damnit! Now I was forced to call my neurologist. This wasn’t my first rodeo. As expected she told me she couldn’t do anything without seeing me first…so come on down to the ER Waiting Room!!!!! Double damnit!!

At this point I was so sick and tired of multiple sclerosis; these relapses, the hospital, my insurance company, just about everything MS had brought into my life. I had all these hoops that I had to jump through and I had only been diagnosed for a few months! I really began to wonder how I was going to deal with this disease for the rest of my life. Forever! But as quickly as I started having those thoughts, I forced myself to push them aside. With MS, if you stay in those “what if” thoughts too long you will drown. You must keep moving, literally and figuratively, and take things one day at a time. So I packed up my E.R. Survival Kit and I headed back to my home away from home; the hospital. 

After another crazy long stay in the ER waiting room I finally got into a room to begin the initial poking and prodding that had to be done before the ER doctor could determine that what was going on was “likely neurological and due to my MS” and so he “paged the neuro team and they’ll be down shortly.” Thanks Captain Obvious!!! I had told the registration nurse that along with every single other medical professional I’ve seen in this hospital since her…but alas, sometimes people just don’t listen to the patient. The main problem here I think was that it didn’t LOOK like there was anything wrong with me. At that point I still had normal movement and dexterity in my left hand, I just couldn’t feel it. No matter how many times that doctor poked me with a safety pin my nerves were just not having any of it! 

To make things even more fun my primary neurologist was still out of town on holiday weekend (which really was fine because I didn’t like her much anyways) but that meant it took even longer for things to get done. What felt like a million hours and tests later I was told that yes, I was having a relapse, but that it was “not that bad.” I was given the option to treat it with oral steroids or IV steroids. Apparently I became a doctor while I wasn’t looking. Well, fine then, if it was totally up to Dr. Julie then that was an easy decision. Oral steroids I could take at home but I had to be admitted to the hospital for several days to get the IV steroids. I was not prepared for another hospital stay; physically or mentally. The IV steroids are much stronger than the oral form, but the doctor said it “wasn’t that bad.” I quickly decided to take the oral medication prescription and head home before anyone changed their minds. The nurse encouraged me to come back right away if my symptoms worsened. If you read my medical record it states that “patient responded yea I’ve done this once or twice before. I should know in the next 24-48 hours whether I need the IV. I’ll keep you posted.”

On the outside, while still unable to feel my left hand, I appeared cool, calm, and collected when I left the hospital that day. On the inside, I was cursing everything under the sun and questioning what I possibly could have done to deserve being stuck in this mess. But I also knew that compared to my previous two relapses, so far this one was in fact pretty minor. For now. Just looking at me you would have no clue something was wrong. No one could tell I was sick unless I told them. And why worry people when there was nothing they could do to help me? I decided I would take the steroid pills to settle this MS flare down, my DMD was finally scheduled to be delivered the following week; and I had high hopes that medicine would be the game changer! I was SO DONE with MS. Armed with not one but TWO medications now to help my body fight the MS I was sure to get some control over my disease.

Multiple Sclerosis, or any invisible illness for that matter, is a double edged sword. On the one hand, I get frustrated when people can’t physically see my disease because it often causes them to lack understanding or underestimate the daily challenges I face. But on the other hand, I am grateful that others can’t see the damage inside my body or the pain that I struggle with because I don’t want others to feel sorry for me. I don’t want my MS to take away from anyone else’s joy in life. I bet a lot of Warriors understand where I’m coming from. Everyday we get up and face two battles; one against our own bodies and another against a society that is incredibly lacking in awareness and understanding of invisible and chronic illnesses.

Not all disabilities are visible; on my good days mine isn’t. If you happen to pass by me in the grocery store you would have no idea I have MS. Heck, you might even think I was healthy and physically fit; walking around in my gym shoes and yoga pants pushing my cart down the aisles. Good! Most days, that is exactly what I’m hoping for. I’m hoping that you don’t realize that I’m using the cart as a walking aide because I know I’ll be struggling if the shopping takes more than 45 minutes, or if I have to stand waiting in line for too long at the check out. I hope you don’t see as I load my groceries into my car as fast as I possibly can because I parked in a handicap spot to save my legs and it’s only a matter of time until some ignorant person comments on how “those spots are reserved for people with actual disabilities, Miss!” Yes, some ignorant lady once stopped me from loading my groceries to shout this at me!

You never know what is going on inside a person’s body or mind, so be kind. MS taught me this lesson in a way I never understood before. Growing up you learn “not to judge a book by its cover” and to “walk a mile in someone else’s shoes”. You learn empathy. I most certainly did; or so I thought I did. But then I was diagnosed with MS and it opened my eyes to a different way of living.  Through each of the obstacles MS has thrown at me, I’ve learned more about myself and life than I ever imagined. 

After a whirlwind three days in the hospital and attending the wedding of the century I was ready to sleep for a month! But once again my MS had other plans. Now that I had experienced my second relapse I was “officially” diagnosed with MS and it was time to choose a DMD. (Disease Modifying Drug) I was lucky to be diagnosed with MS at a time when researchers are constantly developing new treatments for patients, unlike twenty years ago when the were zero medications readily available. While I was informed right away by my neurologist that there was no cure for MS, she quickly suggested a list of  medications that could slow down the disease. Sounds good, right? Well, sort of. The important thing to note is that they are called disease “modifying” drugs. Not disease stopping, pausing, halting, or dare I say…curing. No, that is NOT what you can expect when subjecting yourself to taking a DMD for your MS. The goal of any DMD is to SLOW the progression of your disease. That is absolutely a great goal. And for a lot of people these drugs work, at least for a long time. However, DMDs have two major pitfalls: 1. The cost. 2. The side effects. 

Thanks to my (super secret at the time) wedding the month before, the cost would be mostly covered by my new insurance. The first couple of months would be expensive but once I met my out of pocket maximum, super insurance picks up the rest. I didn’t truly realize the value of this new insurance until I called to schedule delivery of the first month of my DMD and they told me the co-pay was $1,400.00! WTF?!?!?!?! That is more than my RENT! And so I dove head first into battling insurance to approve and pay for the medication I needed to slow down my disease.

When I left the hospital my neurologist gave me a list of twelve DMDs, circled four, and told me to go home and research them. I was scheduled for a follow up appointment with her in two weeks at which time I was supposed to tell her which one I chose to take and we would “get the paperwork started.” Well that sounded complicated! Just pick one?!?!?! How do I know which one will work for me? Which one is the right one? Why wasn’t SHE picking the medicine?? Isn’t SHE the doctor?? I had so many questions! She offered little guidance and told me simply, “it mostly comes down to which side effects you can tolerate the best.” Again, WTF?!?!?!?! (Note: One month later I fired this neurologist telling her, “I’m pretty sure I know more about MS than you and I’ve only been diagnosed two months.” Stay tuned for that!)

On my first day home from the hospital I spent hours in front of the computer reading the prescribing information for each of the four drugs. A few of the common side effects for all the drugs included – headache, nausea, diarrhea, dizziness, blurred vision, increase heart rate. While none of that sounded like tons of fun, any one (or even a couple) of those sounded better than a monthly stay in the hospital. But then I got to the bold print warnings that come with each drug. One warned of permanent liver damage, a few others warned of the risk of developing a fatal brain disease, another causes your hair to fall out. I can’t even tell you how many times I muttered WTF to myself while I was reading. It seemed completely illogical that the medicine I would take to help slow my MS progression might cause my body more harm in other areas. Or even kill me! WTF MS?!?!?

A week out of the hospital I had read everything I needed to know (and a lot of things I didn’t want to know) about my drug options and I had come to the conclusion they all sounded terrible! The only other factor that needed considering was the method of administration. This was eventually what made the decision for me. Of the four medications I was to choose from, three were injectables. That means I would have to inject myself everyday, or at least three times a week, for the rest of my life! I don’t have a fear of needles or anything but those drugs also came with their own “common side effect”; injection site reactions. Depending on the person, this could mean anything from a little redness and irritation to huge welts and divets in the skin after prolonged use. Not quite sure what “skin divets” were I took to my computer and after one Google Image search I quickly decided injectables were NOT for me. Yikes! (DON’T Google it!) That left me one option, the twice a day oral pill. Sounds easy enough. Oh, but it comes with the risk of that fatal brain disease I mentioned earlier. Despite the risks, given all the options, I felt like I was picking the lesser of four evils.

I didn’t want to take too long to choose a DMD because I knew that it was typically a battle getting the insurance companies to approve these medications. By the second week of June I had submitted everything my neurologist and insurance needed to get those pills delivered to my doorstep. There was nothing I could do now but wait and rest my body. And so I did, for a week or so. I was waiting and waiting but heard nothing about getting my medication. So began the first of many battles with my insurance. I had to call everyday for two weeks to get things sorted properly. At a time when I should have been putting zero stress on my body, I was having to spends hours on the phone trying to convince people to give me medication that I so desperately needed; AND to not charge me a million dollars for it either! 

Stress is the most common trigger for MS symptoms. Heat is also a terrible thing for MS. Following my second hospital stay I decided it would probably be smart to take some time off of work if I was going to make it down the aisle at my wedding in August. I was battling my insurance for a DMD, I was still recovering from the new lesion my relapse left in my brain, and it was the dead of summer in Chicago. It took everything I had most days to get out of bed and run a few errands, let alone commute downtown and represent people in court. I figured cutting out work would give my body the time it needed to recover. Plus, once I got my medication in order and a DMD into my body, my MS would hopefully quiet down. The steroid treatments I got in the hospital had put a band-aid on it, but the DMD would quiet it long term. Then all would be back on track. Right?!?! Of course not! I had MANY more MS lessons to learn.

I realized rathered quickly in my diagnosis that sometimes with MS there is no good option. Sometimes it comes down to picking the lesser of two evils, or four in my case. Just don’t dwell on the negative. There is a positive in every situation if you are willing to look hard enough. While I was ecstatic not to have to inject myself with a needle everyday, for the first couple weeks whenever I would get a headache the thought of “oh shit, is that the fatal brain disease?!?!?!” would briefly cross my mind! But I never allowed myself to stay in those thoughts for too long. If I did I would be living a miserable life. Every medication came with a handful of risks but my MS had made it clear that the biggest risk was leaving it untreated!

Some people with MS choose not to take DMDs, some people can manage their MS without them, some people treat their MS 100% naturally. To each their own in my opinion! Choosing a treatment course is like MS; it’ is different for everyone. And to make things even more exciting, most Warriors have had to try more than one DMD in the lifetime; some have tried them all! What works for one person might not work for another. And a drug that works for you now may not work for you one year from now. Never a dull moment with this disease. What’s next MS?!?!