All About LEMTRADA: Reboot & Heal

Hello all!  Have you have had a chance to listen to episode 8?

Making the decision to choose the right therapy best suited for YOU is difficult.  Some days this thing called MS responds in such strange ways, it’s hard to tell what would be the best choice! This week we wanted to separate Lemtrada from the other therapies we’ve discussed and share our individual experiences.

Both of us have taken 2-3 therapies and we felt it was important to separate Lemtrada from the others.  One reason is that it’s considered a newer DMT used to treat MS (only FDA approved within the past 5-10years).  In fact, Daana was the first patient in Wisconsin to be infused with Lemtrada.   I believe I was the sixteenth patient from my neurologist’s office.  So, yes, this is certainly viewed as NEW.

The fears and anxiety of any treatment are normal, of course, but to include them in something that has a tremendous amount of preparation (before and after),  can leave you jittery.  Not mention the uniqueness of Lemtrada.

Remember, if you decide to make this therapy your choice to treat MS, ask your prescribing doctor questions!  Nothing is silly and it is better to ask before diving in head first.  Should you choose Lemtrada it would be helpful to:

  • Be your own advocate
  • Ask questions (I can’t stress this enough)
  • Do your research and decide if this is best for you
  • Talk to your support network
  • Join the Lemtrada Facebook group
  • Stay positive
  • Breathe, you will get through this
  • Follow your prescribing doctor’s  protocol
  • Call Genzyme and ask questions (they are the pharmaceutical company that will provide this therapy to your doctor)

Read more about Lemtrada on the Sanofi Genzyme website for more detailed information: https://www.lemtrada.com/

A few things I wanted to mention…if you do decide to have this infusion: be aware of any changes that may occur in your body. You are not paranoid or being a hypochondriac.  It is very important to note any change that is out of your normal way of feeling.  This is to ensure that your treatment plan runs as smoothly as possible.  The various delayed side effects are NOT something that happens to everyone.  Let me stress, it has happened to someone, therefore, it’s our understanding that pharmaceutical companies are required to report these occurrences.

*We are not doctors.  We’re just two gals that chose to take control over their MS and select a therapy that worked best for us!

Until next time.  Episode 9 will be here before you know it.  In the meantime, listen to 8 & catch up on any episodes you may have missed.

Find us on Facebook, Instagram, Twitter and now a new YouTube channel!

D & D

 

Episode 8 — LEMTRADA Lessons

Listen to Episode 8  of Myelin & Melanin!

Join us as we share our LEMTRADA stories. We reflect on life before, during and after LEMTRADA. Would we do it again?

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!

We also have a new YouTube channel. Search “Myelin and Melanin” on YouTube to find us — check us out and subscribe!

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.


 

[ Episode 7 Recap ] Excess Baggage: Traveling and Dating with MS

Pack your bags, the boarding pass is printed, sunglasses are on the table, shoes are at the front door, but WAIT!  I seem to have forgotten some things, like an extra pair of undergarments, clothes…OH and the fact that I just can’t pick up and run like OJ (the one that we thought was normal) in the airport.

Traveling has become daunting and honestly isn’t as fun as it used to be, said hundreds of MS patients. I know we laughed a bit in the podcast,  but jumping on a plane, train, or in a car requires far more planning and preparation when you have a disease that requires so much attention.

We wanted to share personal accounts about what travel means to us and shed some light on things to think about as you go into this Spring and Summer travel season. Below you can download a helpful checklist that may help as you pack for your travels. Yes!  We want to inundate you with tools that will help!

Love & Light

 

D & D

Catching Cayla

Happy Spring?

Pardon my sarcasm, but I think a majority of us are still feeling a bit chilly and hoping for some consistent warmer temps — although, many MS patients suffer from terrible, downright unbearable, heat intolerance!

How does heat affect your MS?  I can speak for myself and tell you that I’d rather go on an Alaskan cruise rather than book a trip to the Carribean for Spring break!  No, my heat intolerance isn’t fun, and unlike many people I know, I am dreading the summer months.

As you know by now, there are over a million people (worldwide) who have been diagnosed with MS.  Each one of us is affected differently; this certainly isn’t a one size fits all illness.  You may love the beach and never face any challenges with 80-degree weather. That’s fantastic if you can enjoy each season and its beautiful weather. Just know that there are many of us glued to our AC from May-October, depending on where you live.

For those of you wondering about heat intolerance and MS, take a look at the link below. There are many symptoms that heat and humidity can bring, such as muscle weakness, brain fog/confusion, irritability, or loss of function in your extremities.  With proper rest and enough recovery time, your body will adjust, cool down and find its normalcy again.  Keep in mind, this is however you define your “normal.”

Read and learn about the various strategies that will help you in those times of temperature sensitivity.  Your symptoms may just be that, symptoms.  Most neurologists will tell you that the feeling is temporary and you have not caused damage by being in the sun.  Take a look.

Again, Multiple Sclerosis a disease that will leave you feeling puzzled, which is why it is important to educate yourself and become familiar with the various types.  We posted a video about the types but here is a link that will go into more detail for you, so take notes.

Additionally, I would like to show you an example of an amazing young lady who was a high school competitive runner, and how becoming overheated affected her.  She is quite an inspiration!

Until next time….

Love & Light

D & D

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Episode 7 — Excess Baggage: Traveling and Dating with MS

Listen to Episode 7  of Myelin & Melanin!

Traveling and dating with MS is no walk in the park — it’s often fraught with anxiety and hassle. To put it simply, MS is excess baggage. Join us as we discuss some of our experiences and musings on traveling and dating with MS.

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!

We also have a new YouTube channel. Search “Myelin and Melanin” on YouTube to find us — check us out and subscribe!

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.


It’s Easy to Go Fast

“It’s easy to go fast.” – Lindsey Vonn

I was watching the Oscars a few weeks ago, and one of the reporters on the red carpet asked Lindsey Vonn if it was easy being at the Oscars, walking the red carpet. She replied with a resounding “NO.” Then the reporter said, “You’re an Olympic athlete, I can’t believe you’d be nervous.” Lindsey so eloquently said, “Yes I am, it’s easy to go fast.” She then went on to say being there was a bit out of her comfort zone, albeit exciting. For those of you unfamiliar with Lindsey, she’s a 4-time World Cup champion and won an Olympic gold medal in 2010. Needless to say, she has dominated the ski slopes for quite some time.

Oddly, Lindsey’s response resonated with me and her words wouldn’t leave my mind. I kept hearing, “It’s easy to go fast.”

That absolutely rings true for a majority of us in the daily rat race. Even daylight savings has to get in and push ahead on the fast train. But my question is “why”? Why try to rush through daily life? Shouldn’t we be taking a pause without feeling guilty? Aren’t we more productive and less likely to make errors when we take our time?

How does this relate to people with MS? We know that mobility can pose a challenge to those that have gait issues. Not to mention spasticity, which makes muscles feel like 1,000-pound weights at times. Becoming too tired as you rush through your day can pose problems and possibly spin you into a whirlwind — or even worse, lead you to symptoms going awry.

I think in order to feel better about checking things off of your list, it is important to remember to rest.  SLOW DOWN.   I think you may find interest in how many view life in the slow lane. The article below goes into more explanation on the importance of slowing, resting and taking breaks. “It’s easy to go fast”,  isn’t it?

Check this out:

Importance of Rest with Multiple Sclerosis | DemosHealth

What are some things that you do to slow down? 

Tune in Friday to our next podcast — Episode 7 — Excess Baggage: Traveling, Dating and MS.

Have a great day!

 

[ Episode 5 Recap ] It’s Not all in My Head

Let’s be honest being told that something is “wrong” with you and that you have been diagnosed with an illness with no known cure is completely mind-blowing.  We can’t speak for everyone but it has to be a shock to the system.  It seems as if a diagnosis can lead to a plethora of emotions, depression & anxiety are two which certainly stand out.

Depression can be difficult to manage on your own and when things go awry you may not know where to start to get help.  MS is hard.  There isn’t an easier way to say it.  The unpredictability of this illness can lead someone into a whirlwind of emotions.

According to the MS Society depression is one of the most common symptoms with people that have Multiple Sclerosis.  Of course, we all have highs & lows in life and I think what makes MS patients experience anxiety and depression is the unpredictability of the illness.  We may go to bed feeling strongwith the ability to move about with ease, then wake up in the morning not being able to lift your legs or even see.  Needless to say, it’s scary!

No, it’s NOT all in my head — is this really happening to me? A question that so many of us ask ourselves. How everyone manages their illness after the diagnosis is completely different.   You’re diagnosed, now what?  The control you thought you once had over your life is now in the hands of a disease.  That lack of control we mentioned in the podcast, is the green light for anxiety.

Anxiety doesn’t care what time of day that it decides to disrupt your life.  It creeps in — actually, it attacks your mind with a vengeance.  We may be experiencing numbness is our legs and feet then all of a sudden lose the ability to walk which makes it easy to fall into the web of anxiety.  Is this the start of another exacerbation?  Is something else wrong with me besides MS?  The “complex unpredictability”  nature of this disease can open a window to all types of emotions.  It’s important to listen to your body and talk to your doctor.  Remember that you are not alone and you aren’t exaggerating how you feel.  This is real and an adjustment to accepting a new normal.

Until next time…Love & Light!

D & D

 

Episode 5 — It’s Not All In My Head

Listen to Episode 5 of Myelin & Melanin!

You mean to tell me that I have to start worrying about my mental state in addition to my physical body? You’re kidding me, right?

This week, we will be talking about the realities of depression and anxiety, and how they relate to our MS.

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.

* Please forgive the sound quality of this podcast; we had some equipment difficulties.

[ Episode 4 Recap ] Energy Vampires & Protecting Your Energy

Have you ever been in someone’s presence, be it online or in close proximity, and start to feel uneasy?  You may start to notice tension throughout your body, your stomach may be in knots, your breathing may become erratic.  Well, if you notice those small but subtle changes, you have been bitten by an Energy Vampire!  Beware…

According to Dr. Sophie Henshaw in How to Avoid Being Drained By Energy Vampires, “Energy vampires are emotionally immature individuals who have the sense that the whole world revolves around them. They are almost incapable of seeing things from another person’s perspective. They often lack empathy. They believe that they must take everything they can get from others and that giving anything will deprive them of essential resources.”

As we’ve discussed in previous episodes, stress and MS are a dangerous combination. Imagine the stress that energy vampires wreak on one’s system! When you’re dealing with MS, you’re already operating with a deficit — dealing with someone who drains you, instead of refilling your cup, can be damaging to your spirit (and manifest in your body). Take care to avoid them! Or, at the very least, be aware of this type of person (or situation) and keep your distance.

It’s important to recognize when your personal space has been invaded, because your body will tell you when toxic energy is unwanted.  In the podcast, we talked about a couple of techniques to help keep the negativity at bay.  Meditation and body scanning are always easy ways to escape the “bite.”  If you’re curious about how to incorporate relaxing or energy blocking techniques take a look at the link below.

 

We want Myelin and Melanin to be a place where you find information that is beneficial to your life.  Remember, avoid the bites and stings that energy vampires can bring!

Love, light & awareness! 🙂

D & D