Friday, July 12, 2013

To my Fellow MS Sparklers

When first diagnosed with MS, I stayed away from google and the like.  I gathered information from my doctors and the National MS Society and left the rest at the door (the rest being blogs, forums, information Q&A's).

Part of this withdrawal from the MS community began with a bad experience at a MS event.  I was recently diagnosed, was recently home from the hospital and was recently invited to a "Newly Diagnosed MS Support Group".  I went with high expectations for the event (another expectation ruined the day moment) and left with distaste and misfortune. 

I was the youngest person there, the only one with a then so sexy walker.  Most of the other MS patients had been diagnosed for a year plus.  Some people there didnt even have MS, some people there to complain.  Most everyone there spoke about how MS had completely changed their life.  All of this combined scared me right out the door and into a "keep my MS to myself" hole.

I was naive.  I was of the hopeful thinking that MS was not going to change my life, that I would return to DC, return to my job, return to my life.  I wasnt going to need the lawyers advice on how to apply for disability (this lawyer later turned out to be a great asset when I realized I did), I wasnt going to go to support groups for MS and I didnt see the need to work to create MS awareness.  

So completely naive.  Or was it hopeful?  It could be argued both.

Then I had my second relapse.  And everything changed.  I felt so alone in my MS journey.  One night I searched "multiple sclerosis" through my tumblr account.  Reading the stories, the journeys of other MS patients, was at first scary for it wasnt pretty; but eventually it made me feel less alone, encouraged in my own journey and wanting to share my story to create a more friendly MS awareness world.  

And here we are.  The Sparkled Life was born and I've had the chance to learn of so many other MS Sparklers' stories, all leaving me with a warm feeling in my heart.  Though every case of MS is different, the fact that there is someone out there that is walking this journey as well is encouraging.  I wouldnt wish MS or chronic illness on any person.  But for those who have been gifted the hard blessing, I'm glad we have the means to be in it together.

A few nights ago I took to Instagram for some answers to a few MS specific questions I had and the response was uplifting and helpful.  I thought today, why not try the same here?

Below are a few questions that I've come across myself; if you have MS, know someone who does or just want to give some input, all is greatly appreciated!  Feel free to either leave a comment or email me at  

If you are currently struggling with MS and just want someone to complain to, the offer is the same.  Its a rough path; no one should have to do it alone.  There is a strong MS family and community.  We're like a rose bush: we have thorns and pointy parts but in the long run, we are a beautiful community of flowers (hows that for corny?).  

But for real, you are not alone.  You are a fighter, you are strong, you've got this.  There is hope, there is love.


Questions for MS Sparklers Part 1:

  1. Tecfidera - On it?  Tried it?  Like it?  Thoughts about it?  Experience symptoms/side effects?
  2. Fatigue and Insomnia - Fatigued by the day, insomnia by the nights.  How to switch it?  Suggestions / words of wisdom?
  3. Celiac Disease and Gluten Intolerance - have you seen a correlation?  
  4. Migraines / Headaches - Do you get them?  Ways to prevent besides pain relievers?
  5. Have you ever felt pain in a place where you have a lesion (such as along your neck/C-spine)?
  6. How do you explain to friends/family about the inconsistency with MS (such as yesterday was good, but today I have to cancel for it's bad)?
  7. Any blogs / sites that you would recommend that have been helpful and/or encouraging to you in your MS journey?
  8. What is one area of research with regards to MS that you would like more effort being put into; such as new exacerbation treatment therapies (ie steroids, plasma exchange, IVIG), new MS management drugs (Rebif, Tecfidera, Tysabri), new symptom medications (klonopin, gabapentin), new symptom treatments (physical therapy, acupuncture, massage), new answers as to the "whys" (why have MS, why have relapses, etc)?