Monday, March 3, 2014

7 days of MS Awareness Week – Day 1

“You’ve got this.”

MS Awareness Week kicks off today and will last through March 9 2014. So, what better way to kick off this important week than with a little video?  As part of a project hosted by Healthline called “You Got This”, I created and submitted a video about the four things I did when first diagnosed. Below is a recap of my chat.

Top 4 things I recommend when newly diagnosed with Multiple Sclerosis:
  1. Gather information. I spent a good part of my early years with MS doing a lot of research. I read books, articles and surfed the web for information. It was important and remains important that I understand how those pesky lesions along my spinal cord will impact my life.
  2. Start treatment, promptly. First things first, sign up for a Disease Modifying Therapy (DMT) regimen. I was urged by my neuro to start DMT right away and was on treatment within a month of diagnosis. Slowing down the progression of MS is my main priority.
  3. Seek support. This is so important. I sought and still seek the love and support of my loved ones. And, I really appreciate the support from my MS friends, on and off line. Thanks you guys, for making me feel less alone.
  4. Do something you love, everyday. There’s something to this. Trying to do something that gives a bit of pleasure really helps me, reminding me that there is more to life than an MS diagnosis and doing something I love takes me away from dwelling on MS stuff. Great advice from a great friend.
The best part of creating the video? Healthline donated $$$s to the National Multiple Sclerosis Society (NMSS) and they are doing this with each video posted on their site. Awesome!

 

If you’d like to make a video yourself, have a look here:
You've Got This via Healthline.

How about you? What’s on your list of advice to someone newly diagnosed with MS? What have you learned through the years? Stop by and leave a note.  I would love to hear from you.

Best always & hugs!


Christie

Wednesday, February 26, 2014

Wordless Wednesday - do what you can


This line of thinking served as a great reminder for me recently and I thought I would share Arthur Ashe's wise words. You see, this past weekend I had intended on doing so much but fatigue hit me hard and I ended up doing so little. Yet, I turned the "doing so little" into things I could attempt, including continuing to read a great book I've got my nose in. Learning to accept limitations is difficult yet all we can do is use what we have, and do what we can. 

How do you "start where you are, use what you have, do what you can"? I would love to hear from you.

Best always,
Christie 

Sunday, February 23, 2014

10 DMTs with 8 more on the horizon (fingers crossed)

The Multiple Sclerosis Association of America (MSAA) just published their latest report, MS Research Update, which is an uber useful guide to drug therapies for those of us living with MS. It’s very comprehensive and I strongly urge you to download the report and have a read through it. It includes information on drugs approved by the FDA, experimental therapies and alternatives.

It's incredible to know that there are 10 DMTs (disease modifying therapies) available today with 8 more on the horizon (fingers crossed!). It was not so long ago the choices were only a few (Betaseron just celebrated its 20th anniversary last year).
DMTs available today and (hopefully) tomorrow
Source: "MS Research Update" by MSAA Feb 2014

DMTs available today (FDA approved)
Source: "MS Research Update" by MSAA Feb 2014

DMTs available (hopefully) tomorrow
Source: "MS Research Update" by MSAA Feb 2014

While these therapies don't cure us from MS, it certainly is amazing that we have these available, to slow down the progression of this complicated disease. And, I think the number of therapies will only increase, significantly. Yes! This gives me hope that as we continue to support research and therapies, we will continue to get closer to that cure. 

Download the full MS Research Update here

Take care,
Christie

P.S. I hope you enjoy the bar graphs. Please note that all of this information comes directly from the "MS Research Update" published by MSAA in Feb 2014. It does not include other therapeutic strategies (of which there are 10+) or symptom management medications or therapies. I urge you to download the full report to equip yourself with information, research and knowledge about the advancements made with MS therapies. 


Wednesday, February 5, 2014

Wordless Wednesday - supply our own light

- Stanley Kubrick

I came across this quote some months ago and found it to be a great reminder to look to our inner strength, to supply our own light, when things get dark. Do do you relate to this quote? How do you find your light?

Sunday, January 26, 2014

As a bad day ends, wake up to a new tomorrow

We all have bad days.  This is especially true with chronic illness, like Multiple Sclerosis, as we encounter moments of pain, numbness, fatigue, spasticity and/or immobility. How on earth do we overcome these aching minutes, hours, days, months or, sometimes, all of our post-diagnosis lives?

I certainly don’t have the answer or a one-size-fits-all solution to offer up. But, I do believe there is something to remembering that with each breath is a new moment. That as a bad day ends, we will wake up to a new tomorrow, to a new day.

(c) C Germans Photography, 2011
Yeah, I wear rosy colored glasses. You caught me. I’m always drinking the proverbial glass-is-half-full.  This attitude, though, keeps me positive, remembering that bad days do not have to last forever. I was reminded of this while watching and listening to Shayne Koyczan (his video, "INSTRUCTIONS FOR A BAD DAY", is linked below). His spoken word in is truly a poetic reminder that bad days do come to close and that we can and should have hope for a better tomorrow.

I cannot pretend to know exactly what my fellow MSers go through on a regular basis - we’re all different. For me, feelings of loneliness and fear sometimes come up. This, plus enduring the physical symptoms of MS, can be difficult for me to manage. I am very hard on myself when I have bad days and I grow frustrated when my symptoms force me to rest or forgo something I was really looking forward to. I get pretty pissed off, angry to find that MS can limit my day(s). Yet, I try with all of my might to remember that the bad days don’t last forever. I try, try, try to wake up tomorrow morning with an open attitude, the chance to begin anew.

Does this make my symptoms disappear? Certainly no. But, trying to float up to a higher sense of optimism really helps. It’s so easy to fall into the despair that our symptoms can sometimes take us and I don’t want that for my life. I’ve got too much to do! So, while my symptoms may remain tomorrow, my attitude is certainly sprinkled with more positivity and shifts towards more hope for a better tomorrow.

"If you’re having a bad day…check your blind spot, love is still there" Shayne Koyczan, spoken word artist

And I don’t have to live through this alone, do I? Nor do you. Always remember that love and kindness are truly in your blind spot. Just remember to check it once in a while.  I say this because I sometimes have feelings of guilt when it seems like I am burdening my loved ones with my bad days. This makes me hold back, withdraw, and stop communicating about what I’m going through. During a recent and intense “bad moment” I checked over my shoulder and saw love, waiting for me. It’s been there all this time yet as I started wandering down that path of uncertainty and fear, I forgot and lost sight.

So, as I opened up, expressing my fears of a potential relapse (nope, not one, but still got scared) and what this could mean for the days and weeks ahead, I rediscovered how important love is during these moments. I was flooded with emotion and may have even released some tears (a rarity for me, I’m not a crier). A huge sense of relief came over me because I was reminded that I am not alone and found that the day-after-the-outburst was much, much better. I navigated the new day with a different, more positive perspective. A more hopeful one, no matter what showed up.

After all, I have to take the leap of faith that the next day will truly be better.

How about you? How, on your bad days, do you lift yourself up? Do you breathe in new moments or perhaps you’ve got another way to say goodbye to the bad day and hello to a new one. Would love to hear from you.

Best always, Christie

P.S. thank you Mr. Shayne Koyczan for giving me the opportunity to watch and listen to your words. You rock! 

P.P.S. listen to Shayne's words here: this-is-not-just-your-typical-pep-talk-or-instructional-video

Friday, January 10, 2014

Top 7 benefits of having pets in our MS life

Image courtesy of MultipleSclerosis.net
I recently jotted up a post on MultipleSclerosis.net about the benefits of having pets in our lives, specifically in our MS lives. Pets are truly wonderful as they help us cope, lift us from feelings of loneliness and depression and get us outside for a bit of sunshine and exercise. 

I’ve got a cat named Hans and he really makes a big difference, especially on the days I don’t feel good. He was my inspiration for the post, Woof, meow, tweet…the benefits of having pets in our MS life where I list the top 7 ways pets enrich our MS lives.

How about you? Do you have any stories about your pet(s)?

Best,
Christie

Tuesday, December 24, 2013

Coming Soon! True Champions video story

I recently had the pleasure, no wait…make that honor, of working with one of the fab crews over at HealthiNation, an online health video network. The team is producing a bunch of video feature stories, including some about MSers, as part of their “True Champions” series. The videos highlight folks advocating awareness of specific health conditions.

A producer, camera operator and sound tech hung out with us in sunny San Diego to shoot interviews, capture Team Luca riding and enjoying life in our neighborhood. Essentially, the whole point of the matter was to reflect that I am able to live a full life, one that is not defined by Multiple Sclerosis.

What an amazing experience! First, the crew was incredible and so very professional and mindful. My new pals were considerate of my energy, comfort and time as we created the material, frequently checking in with me to see if I needed water or just a break. And while I did wake up that morning battling fatigue, I informed the crew that I was okay because, as I shamelessly pointed out, “I’m on drugs. No, wait, as prescribed by my doctor. For fatigue, it’s nothing to worry about...I’m just a little amped up”. Yes, needless to say, I was pretty excited about participating in this project.


The day consisted of interviews and shots that highlighted my diagnosis, life with MS and My MS Manifesto. I tried to give Dr. Julie some serious cred here, as she is my inspiration, but found myself mispronouncing her last name. Nonetheless, we talked about the list of things I hope to do while living with MS, including laughing-laughing-laughing, jumping off the Stratosphere, riding my bicycle and working to lift up the MS community.

Now, I don’t want to give too much away because the video won’t be released until January but I will say it was a blast! At some point the camera operator was hanging out of the car window, armed with his camera, shooting Team Luca riding, yelling “Yeah! This is awesome!” So, stay tuned my friends.

Team Luca! Photo courtesy of HealthiNation
Oh, and the bonus? Even though I was battling fatigue all-day and endured some pain my leg, I got the chance to ride my bike. Yet another reminder that, when I ride, I am full of joy and bliss and forget that I am a person living with MS, if even for a few moments.

Best always,
Christie

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