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 thesparkledlifegirl@gmail.com.  

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.

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)?

Here I am

What is common with multiple sclerosis is that a person will experience a relapse due to a lesion on their nervous system.  

In the young ages of MS, these relapses usually heal up.  There are various ways of helping to recover from a relapse (steroids the usual, plasma for extreme/back-up).  

A MS sparkler then heals and goes into remission.  And though that is good progress, it can also be challenging, not knowing when the next relapse will strike.

Today I only did two things: attend church (in my wheelie...didnt even have to walk) and go to Starbucks to catch up with my lovely friend Natalie.  

 Such a good friend this girl is.

Two non-stressful, relaxing things.  

Yet I found myself at 5pm as if I hit a brick wall. And am still recovering.

MS can mess with you cognitively and emotionally, especially when you have brain lesions as strong as mine.  I must remember that.  It's ok to cry, even though I thought of it as a weakness before; now its more of a recognition of the life that is happening around me.  

Or so I tell myself.

I dont question why God designed for me to develop Multiple Sclerosis.  I see signs throughout my life that lead up to what is today.  And have experienced the most amazing things since being diagnosed, only confirming that I can do this.

But what I do question is why it has to be so severe.  Why is it that I'm two days short of having MS for 14 months yet have not gone into remission?  Why does my body reject everything?  Why am I "so healthy" that the drugs that can make me better make me worse?

Why cant I be a normal, boring MS sparkler?  Why cant I spend more hours promoting MS awareness instead of sitting in a chair having all my blood removed?  

Its very challenging to start this new MS life when I cant even get out of bed.  

During mass today the song "Here I am Lord" was played.  (I know I dont normally post about my faith but it is fitting as it is the rock that keeps me going despite all the let downs.  A rock I so need currently).

As I sat there, in the back of the Church, in my wheelchair, listening to the lyrics, I had to stop and hold back tears.  

Growing up, especially in my high school years, I would ask God to "lead me".  I felt it noble, encouraging.  My calling.  Yes, perhaps naive.  But apparently God still heard and answered.

Here I am....not exactly what I thought I was signing up for when I prayed those words.

But the fact that I asked God for guidance and for love gives me the hope to know that my case of Multiple Sclerosis is no accident.  I dont know why.  I may never know why.  But I trust.

I trust that my doctors will find me some relief.  I trust that I will know what steps to take next.  I trust that all the finances and bills and stress of having a chronic disease will work itself out.  I trust that life will go on and I will continue to sparkle.  I trust that Starbucks will eventually acknowledge and corporately become part of The Sparkled Life (ok...far fetch but a girl can dream). 

The Sparkled Life...day diagnosed, day released from rehab and today.  

I might have lost the tan, gained a few inches of hair, learned how to give real sarcastic faces in pictures...but I'm still me.  MS can alter my nervous system as such...but it cant take away who I am.

To MS sparklers, to MS supporters, to MS fighters...this journey is a promised one.  I have hope for you, for me, for us.

Here I am.

Love, 

 

Here I am Lord...

I have heard You calling in the night.
I will go Lord, if You lead me.

What I'm Learning about Friendship. Part 1.

A while ago I wrote a post on "What I know about Love, Part 1" (found here in archive: http://sparklebutonce.tumblr.com/post/31418225534/whatiknowaboutlove).  

Now, it's friendship's turn.  

I always say Part 1 because I believe these subjects (amoung many others) have continiuos lessons to be learned from. 

So cue Part 1 Friendship.

Not many things can test friendship, or even love for that matter, more than a chronic disease or disability.  No matter what occurs, things will have to change.  This I am learning.  

I mentioned the other day a movie I watched that really moved me..."A Little Bit of Heaven".  I bring it up now because I believe it shows perfectly the types of friendships that occur in cases such as this.  

Friendship can essentially can be broken down into 4 groups:

1. The "Im right next door" friendship.

This is the friend that is the doer.  The one who knows you need some swedish fish and will bring some to you asap.  The one who is going to have you just sit down, drink some chardonnay, while they prepare a huge Italian dinner.  They know your needs.  They know you're sick.  They mix the both together and make your days.

In the movie, this is the guy friend who lives next door, cooks and walks the dog whenever needed.

2. The "I'm right around the corner" friendship.

This is the friend that even though you might not text or hear from daily, you know they are there no matter what.  They'll surprise you with a little note in the mail.  They'll answer your texts with sparkly emoticons and hugs and kisses.  They know your needs when you present them to them and answer to the call when needed.

The movie doesnt really have this friend character but I felt it important to define. 

3. The "Life is the same" friendship.

These are a very beautiful friendship.  The one's who just treat you the same.  Yes, they understand the drama of the situation.  They know this is serious.  But it's not going to change anything.  In the friendship or how they perceive you.  You will always be that same, strong friend they fell in love with and will treat you the same.  Yes, there will be times in which things will need to be modified and this will be done; but in sort of a "unspoken" way.  Not ashamed way.  Just, this is the new normal way.  

In the movie this is the best friend/business partner.  She treats each day as if just like before.  Even in the last moment she is smiling and supporting her friend.   

4. The "I dont know how to do this" friendship

I've debated on what I wanted to say about friendship for a while now.  Because I've been so blessed to have friends who have gone above and beyond in the 1-3 categories.  I'm so blessed by those I'm surrounded with.  They keep me going daily.  They keep me smiling. 

But since this is my story, and thus, the backbone of my book (getting ahead of myself here), I felt it necessary to express my true feelings on all types of friendship, even those lost.  

It may come off as bitter.  Please read to the end.

This friendship is defined by the ones in my life that just couldnt handle the change.  It interferes too much with their life and they dont know how to respond.  

There is one friendship in particular.  This friendship was very dear to me, had been for over 7 years.  

The friendship was defined mostly by a 60/40 effort, me providing 60.  It's not that this friend was selifsh; it's just how it was.

So when I was diagnosed, that 60/40 went to 0/100 overnight.  And this friend "didnt know how to be the friend that I wanted".  Looking back in hinesight though, I dont think this person meant offense.

In the movie, the character's bestest and longest friend finds out that she is pregnant with baby number two the same time the main character receives her chronic diagnosis.  This friend doesnt know how to enjoy her life, handle her difficulties while also trying to support her friend.  So she disappears.  Because what else can she do?

This is almost the exact same story, minus a baby.  My friend was going through life changing experiences, both good and bad, at the same time I was diagnosed.  This friend has expressed that they didnt know how to do both; how to function their life and be in mine as well.  

I shouldnt pin-point one friend.  There have been quite a few, even a love.  

Sometimes people build their boxes and when change occurs dont know how to build around it.  Whereas others, they build as they go on in life.  

I cant deny how upset this has made me, how many tears this has brought me.  Because not only have I lost a friend(s), but it's a slap in the face that my life is so different that persons cant handle it.  I'm such a hindrance that I am cut out of lives.  It hurts. 

Everyone has their own mountains to climb.  And for some, their mountains are not this one, with me, in the sparkled life.  And I just have to accept that.  And move on.  

There is a beautiful scene in which to conclude this friendship type on.  

The main character goes to her friend's house.  The friend who didnt invite her to her baby shower ("it's complicated"), to the friend who doesnt bring dinners, doesnt sit in the park, who doesnt even open the door when it's knocking, who isnt there in the last few hours of life.  

This quote sums up what I want to say to my friends who have treated me like this:

"I'm sorry...it really hurt me when you started distancing yourself, but it's ok.  I get it.  A new baby coming and me leaving...it's not fair having to be so happy and so sad at the same time.  Our friendships is one of the best things in my life and I'm sorry I'm not going  to get to know that little boy, but I know he'll be beautiful, just like Cami (the older sister)...and please, when she get's older, tell her that I love her like she's my own."

Except I'd say the quote without babies.  (:

In summary, for this portion, I just want you to know that I'm sorry you had to choose between your life and mine.  That it got complicated.  And I'm hurt by what happened.  But I understand that again, not everyone has to climb this with me.  

In summary, for this post, I am SO thankful for all the friendship that I do have.  I am BEYOND blessed.  I look around my room, with framed pictures of memories and events, of faces and I love and love me, just the way I am.  Multiple Sclerosis and all.

And for what it is worth, prior to me realizing how important it is to be a good friend, please consider this an overall apologie for all those times I wasnt a good friend.  I am working on it. 

Love always, Eliz