Without you is something I cannot imagine

Hand Heart
(c) Claire Louise at www.puppyfat.com

Dear Friends,

Today is National Friendship Day and I want to celebrate you as I truly value our relationship. You are all important to me as we navigate, together, the journey of living with this intense neurological disease, Multiple Sclerosis. 

This blog started off as I place for me to express the emotions and feelings that came up for me during this “new normal”, as a sort of cathartic process. Turns out, I made a lot of new friends along the way, ones for whom I am truly grateful. 

So, thank you! Thank you for the love, support and hugs, as the months and years following my MS diagnosis have been challenging, scary, funny, frustrating, inspirational, adventurous, creative, interesting and rewarding. Without you is something I cannot imagine. 

Thanks for being there for me and I wish you all the best, always. 

Happy Friendship Day!

Hugs,

Christie

7 days of MS Awareness Week – Day 3

"Why do you connect?"

Every connection really does count and the National Multiple Sclerosis Society (NMSS) is running a great campaign this week, asking MSers and their loved ones to share connection stories with others. 

Here's my submission: 

So, on this 3rd day of MS Awareness Week, I invite you to think about why connections are important to you and share your story. Simply go the NMSS website here: http://www.msconnection.org/#

Cheers and hope you are well this week.

Best,
Christie

Ah...My Fans

Well, one of them any way. And a great one at that. My good friend Mel, who also lives with MS, is one of my biggest cheerleaders and provided a lot of support while I was writing the essay on page 127 of the April issue of Woman’s Day. Love ‘ya Mel! Thanks for giving me so much encouragement in my decision to finally get the blue placard! Mwah! 

10 Things You (Do Not) Say to Someone Who Has Multiple Sclerosis

Hi Everyone,


I just came across this post via facebook and thought I would share. I don't hear these things often from my loved ones but I suspect other MSers do. No bueno. When someone close to you says these kinds of things, it can hurt.


*10 THINGS YOU (DO NOT) SAY TO SOMEONE WHO HAS MULTIPLE SCLEROSIS*

10. MUST BE NICE TO SLEEP ALL DAY
9. YOU'RE LUCKY YOU DON'T HAVE TO WORK
8. I CAN RELATE
7. JUST TAKE SOMETHING
6. JUST TRY HARDER
5. JUST BE POSITIVE
4. YOU JUST WANT ATTENTION
3. IT'S ALL IN YOUR HEAD
2. IT COULD BE WORSE
1. BUT YOU LOOK (GOOD)


Next week is MS Awareness Week. Give your MSer a hug.


Best,
Christie

My First Week of Daily Injections

During my first week of taking daily injections of Copaxone, I have learned a lot, I have accomplished a lot, and all the while surviving it all!

Here is my list of “Top 10 Things I Learned During My First Week of Taking Daily Injections”

10.  The cats will play with the Autoject 2 needle cap once it is released so I have to be careful to dispose of it properly.  They love playing soccer.

9.  Finding the right time and place for injection is important.  For me?  The bedroom since it’s equipped with a sound machine.  I find listening to rain to be very calming.  Until the neighbors’ music is turned up – argh!  Turn it down &*$%^, I am trying to meditate!      

8.  Definitely use the daily planner provided by Shared Solutions to keep track of injection sites.  It’s only been a week and I’ve already fallen out of rotation, skipping over the thigh and straight onto the stomach.  I really like following directions and do not like falling out of order.  I want an A.  

7.  Preparing the syringe for injection is fun!  Seriously.  I like loading and locking the syringe into place, it's rather much like loading a gun.  I really hate guns and have never used one but this step sort of makes me feel like I am on a special mission, like a secret agent getting ready to fight the bad guys.  Agent 99 takes on MS! 

6.  Calm. Down.  Relax.  And.  Breathe.  I find that I get a little worked up just before injecting and need to remind myself of this mantra.  Calm.  Down.  Relax.  And.  Breathe. 

5.  The needle doesn’t hurt at all.  Sometimes I find myself asking, “Did it go in?  Is this thing working right?”  Then the burning arrives and I know everything is working just the way is supposed to. 

4.  Having my partner with me while I injection is UBER important, especially during these first few weeks.  On Friday night I jammed my gun, I mean my Autoject 2, and I panicked.  She stepped in and fixed everything for me. Sigh.  “Calm. Down. Relax. And. Breathe”, she said. 

3.  Taking pictures of where I inject is a great idea (thanks Anna!).  There is no way I will remember where I inject, no matter what I write in my daily planner.  I will try this during Week 2. 

2.  Trying not to let the injections take over your life is challenging.  I do think about it all the time, growing anxious about accidentally skipping a day.  Yikes.  Maybe an alarm will help.

 

1.  Save the most important thing for last, that’s the intention of this list.  The reason why I take Copaxone every day is to slow down the progression of my MS.  I do not want this disease to get any worse so here goes nothing.  Bring on the shots!   

C

My Good Friend Mel

The months leading up to a diagnosis can be stressful, frightening, and frustrating.  I have a lot of love and support around me from my friends and family, for which I am extremely grateful.  One friend in particular really makes a difference.  My good friend Mel.  Mel lives strong every day with MS and is a very large proverbial rock for me.  This is unfamiliar to her because I never really tell her how much of an inspiration and a source of strength she is for me as I face the realities of what is happening.

I have my reasons as to why I don’t let her in on this.  First, and this is selfish, I do not like to talk about stuff, out loud, particularly when it comes to my feelings.   Why would this prevent me from telling Mel she’s been my silent hero?  It would require me to open up, talk out loud about my feelings, hold hands, sing cumbaya, cry.  All of this makes me a bit squeamish.  Second, my symptoms are not nearly as severe as hers and I do not want to minimize her painful struggles. While her foot goes completely numb; mine just tingles.  While she takes daily injections; I take a few pills.  While she gets back tremors; I get tickling and only after a shower.  My symptoms and experiences seem so small compared to hers.

Maybe because of this I have found strength from Mel and learned not to be scared.  She has shown me that you can cope with a disabling disease and live a normal life.  Mel teaches me a lot about how my body works.  She explains demyelination to me.  This is important because it knocks down the myths I’ve manifested in my head about neurological diseases.  When my symptoms worsen, I try to fill my life with what is important, with what makes me happy.  She taught me that.  So, instead of lounging depressingly around the house, I try to get out to Little Italy, my favorite neighborhood in San Diego.  Mel encourages me to listen to my body so I rest when my body calls out.  I always feel better after a good nap!  Finally, laughter is important, especially to me, and Mel reminds me of this all the time.  MRI’s can be funny when you have a friend like Mel. Da,da,da,da,da,da,da,da,da! 

So, I thank you Mel, from the depths of my heart.  I thank you for the courage, strength, and hope you share with me and I love you very much.