Wednesday, May 9, 2018

Pittsburgh Marathon 2018

So a few months ago I heard about the opportunity to partake in the Pittsburgh Marathon hand-cycling division in a recumbent bicycle.  I had to get a lot of notes from doctors and petition the board but they granted me access!!!




But why cycle the Pittsburgh Marathon?  Because MS says I cant run.  "Tell me I cant and I'll show you I can".  I cant RUN a marathon but I sure as well can CYCLE a marathon.

Picture by Empty Nest Photography Studio

So thats what I did. (:

Two weeks before the marathon, the local news station did an interview with me and named me "Athlete of the Week" which was pretty awesome.


To watch, visit here: http://www.wtae.com/article/action-athlete-cycling-the-pittsburgh-marathon/20090659

Leading up to the marathon I ended up with a kidney infection and overheating.  I was so nervous that all my hard work in prepping for this event would be for not.

But I finished that marathon.  And, even more fun, came in first in the female wheeler division. (:



Despite limitations, living limitlessly over here!!




LOVE!!

Tuesday, March 20, 2018

Multiple Sclerosis Influencers

Healthline recently posted an amazing article recently highlighting 7 MS influencers with their mantras that keep them going.

And I had the pleasure of being one of the 7!


Be sure to share what your MS mantra is! 


Saturday, March 17, 2018

How I Stay Positive

I get asked often how I remain so positive.

To which I used to answer, with all sincerity: I just do!



It wasn’t till lately when someone challenged me with the question: 


what are the actual steps you take to remain positive? 


that I saw there were actual, distinctive things I do to remain positive.

First and foremost: I honestly believe the best medicine you can give your body is a good mood. And science thinks so too. Thinking positive thoughts in your head releases certain hormones that relax your bod and equip it for stress.

A firsthand example of this was when I had my bicycle accident. As soon as I landed I knew I’d broken my elbow and could see my humerous bent oddly and pointing out. I panicked. Someone called the ambulance. Someone else took care of my bicycle. There was a Mom with her kid. For some reason seeing that kid brought things in focus for me.  I cant say bad words in front of this kid (this was after I let a lot of f words slip).  I cant let this kid, staring at me terrified, see me cry.  I reminded myself I needed to stay calm, to focus on something good. I started repeating to myself, "I’m going to be ok. I’m going to be ok".  Outloud. And I believed it. So much so that by the time the ambulance got there, my blood pressure was in normal ranges. The EMT was quite impressed.




So, positive thoughts = good.


But how do you run to them easily when the going gets tough?

Training. Just like with anything, it takes time, persistence, and dedication.

Step 1. You’ve decided to adapt a positive lifestyle and mind and remain positive when the going gets tough. You have to want it.  You have to be willing to work for it.

Step 2. Remind yourself of this. Write phrases that remind you on postits and put it where you'll see it many times a day. Change the background of your phone to a positive phrased wallpaper. In those moments you become overwhelmed, you’ll see these reminders and then you’ll go back to step 1: decide to remain positive.

Step 3. Have a go to positive uplifter. For me, it’s puppies. Whenever I’ve had a rough moment where I just don’t want to be positive, I go to the puppies. Either in real life or on instagram / Pinterest. This is an immediate mood lifter. I then see one of my reminders, and then I’m back at step 1.



Step 4: gratitude list. Make a list of all the things you’re thankful for. Keep it within arm’s access. Go to it to add to and remind yourself often. Yes, mine has the basics: faith, family, friends, puppies. But it also has Starbucks. And pizza. And cycling. And the color rose gold. And Paris. And pool days. And so on and so on. It’s a beautiful list of all the things I’m surrounded with that are positive.

Step 5. Reward yourself. Every year on my anniversary with MS, I get myself a present. Something small (an engraved ring) to something big (my hope tattoo), it’s a reward. A reward for making it through the past year with a positive mind. It’s not always easy to do; some days, it’s REALLY hard. But rewarding yourself reminds your brain and your soul, you’re doing great, keep it up.



Step 6. Condition. It helps to have a friend in this stage, or a coach. For me, it was someone I was close to when I was newly diagnosed. Whenever I’d start weeping or complaining, he’d point out a positive lining. It was REALLY annoying. It caused many fights. Why couldn’t he just let me be sad? Then slowly I started to listen. I started to recognize the good. I then went from recognizing to LOOKING for it. And, in every situation, to this day, I’ve been able to find it, to find something good, positive. Even if it’s just me being able to breath: that's positive; I’m alive. 

You have to work the brain muscle and condition it to this type of programming. With time, it will eventually become so instinctive, you won’t even have to think. You just go there. You just are positive.


All this sounds good and attainable.  But what about on those really bad days?  The days where the light is dim and the positive light is dimmer.  What then?


  • No “triggers”. First you have to determine what the triggers are. For me, it’s Facebook (all my friends are living life without me!), dramatic shows/books/movies, depressing music. These melt me in to a state. This also relates to what I surround myself with socially: on media and in real life.  Some people may be a trigger for you in some way (I really dislike the word trigger but here it is applicable).  And for whatever reason it is, maybe just take a break for a bit.  It can also be that someone is continually negative- when you're trying your best to be the opposite, their energy can be depleting.  As has become a very strong saying between my bestie and I, "bless and release".  
  • Quiet. On bad days, I’m very quiet. This usually is because on bad days my speech isn’t working.  (: But also it’s to save energy. I put that saved energy in to healing my body from the hard day.
  • Have a cry. Or reschedule. If necessary, I’ll have a little cry. Just a little one. And then I’m done. If I feel like I need to cry more, I’ll “schedule” it for another time (no joke). I’ll save it for, say, 9pm that night. By pushing it out, I give myself time to find something positive that will outshine that sad moment. If I need to cry though, it’s scheduled, just in case.
  • Make a list. You don’t have to be productive to trick your brain in to thinking it is. If my mind is overwhelmed with thoughts, I’ll make a list of them. Done. They’re on paper/in my iPhone notes. No longer in my brain. Sounds silly but this works; my phone has so many lists on it it's probably quite obsurd.  The cool thing about this, when looking back retrospectively at "bad day lists" of what I'm anxious/worried about, these things I thought were so challenging, I've overcome.  
  • Change the clothes. Even if it’s just switching from pjs to a different pair of pjs, I change. This is important in keeping respect for your body. Showering is just too damn hard some days but changing clothes is attainable. It gives me a little reminder I’m not giving up on my body, I believe in myself enough to change in to clean pjs.
  • Talk to your go to. And don’t talk about your disease outside of “I’m having a bad day” and maybe a bit on what that means for you in that moment. Get lost in the conversation. Even if it’s just for 5 minutes, you contributed to society. You let your mind focus on someone else. You got distracted.

These steps help me to calm my body down. 

And then, I return to the basics:

Deep breath. Quick prayer. Can I be positive and look at puppies? Nope, still a bad day. Ok.

2 hours later: deep breath. Quick prayer. Positive time? Maybe. Ok.

3 hours later: deep breath. Quick prayer. Brain goes back to conditioned mind. I see a post it. Is that a puppy video? Omg puppies are so cute. Ok. Not every day is good but there’s good in every day. Tomorrow will be better. Good night.



Then there are the quick moments: your doctor just gave you bad news. You have to drive home but can’t stop crying. You just want to crawl in a hole. What do I do?

Breath.
Do a body scan.
Head. Shoulders. Back. Hips. Legs. Arms. Am I contracting those muscles? Release. Contract. Release.
Breath.

Look at you- you just took your mind off the bad for a few minutes. You’re going to be ok. Repeat that over with a deep breath in between each movement. You’ve got this.



All this might sound ridiculous. And even while writing it out, I thought “really Eliz?! This is what you want to share? How you schedule your cries?!”

Damn right it is.
Because this is my recipe.

I’ve had some terrible things thrown at me. And yet I still wake up every day happy. Because why not? I’m alive. I’m beautiful. I’m breathing. I have puppies. I have God. I have my family and friends. I have Paris. And I have Starbucks.

Life is good.




Something I want to note is depression and MS have a very strong connection. If you’re feeling like you can’t think of a positive thought no matter how hard you try, seek counseling. Talk to your doctor. It does not mean you’re weak. Ms causes brain damage through demylization and sometimes that can cause depression. Reach out.

Monday, March 12, 2018

this is MS tshirt


(picture by Empty Nest Studios)
damn right it is!!

Get your "this is ms" t-shirt and wear it with pride. Let the world know what MS really looks like. 


Comes in a regular mens t-shirt too! https://skreened.com/thesparkledlife/this-is-ms-6492956



hear I am fashionably wearing it during my last chemo drug infusion (:


Monday, February 5, 2018

January - Year of Health 2018



After a rough December recovering from my latest rituxan (immunosuppressant chemo) treatment, I gladly decided to declare 2018

THE YEAR OF HEALTH


This is kind of ironic being that I dont necessarily have a solid track record of "being healthy".  I have a diagnosis of multiple sclerosis and secondary Parkinson's disease that are a daily battle. Then days that I do fall under the "good, I feel normal" category, I fracture a bone or break my neck or smash my face or do something else completely unrelated that sends me to the doctors.  It's very comedic. And the humor of declaring a whole year dedicated to breaking this track record has not been lost on me.

But, we're one month down and completed!! 

January has always been a harder than normal month; recovering from the holidays, it's freezing cold, it's slippery (aka hell for those with walking adaption equipment), and it's also super long. 

On top of this, this January I was still recovering from the chemo treatment, as well as my gma passed away (love you gma!  She always loved this blog so a big shout out to her!)



And yet, to repeat: one month down and completed!! YES!!

How do I feel overall?  Decently good. (:  This was one of my better January's since being diagnosed in 2012.  I'll take it!

Here are some highlights from my favorite highs and lows: 

NUTRITION


Green Juice


It's a health trick that if you are suffering from some constipation backup, one of the best ways to handle it is to drink a green smoothie.  The mix of the fiber and the water soluble ingredients makes a great mix for helping to get you on the toilet.

Constipation is a real reality for people who have MS.  It's also something I feel like people are too embarrassed to discuss.  I am not one of those people.  (:  I enjoy talking about poop and making sure that myself and my loved ones are staying regular because it's a very vital part of keeping a healthy body.

So in honor of staying regular, I started using this green juice supplement every day.  And guess what?  Ive been so regular that I dont see myself never not using this!!  (I apologize if you're cringing at this TMI.  But like, everyone poops right?).

You mix this with a cup of water and tada- you have a green juice that's so nutritionally packed!  So convenient and easy (both fabulous things).


Vitamins

I take a packet of daily vitamins that have everything you could want in them.  They also are very wonderfully made and dont make you feel nauseous after (I've had that happen to many other brands).  

Here's all they contain:



 I love that they are packaged together because again, convenient and easy.

In addition to these multi-vitamin packs, I take magnesium, milk thistle, and l-lysine.  Magnesium is great for bone health, l-lysine is great for helping the skin and immune system, and milk thistle is fabulous for overall liver health.

I also take a packet of adaptogens daily, sometimes twice.  Adaptogens are natural herbs that are thought to help the body to deal with stress, such as lowering certain hormone levels.  Any kind of stress puts me at risk of causing an influx in MS symptoms so I naturally try to keep stress at an all time low on the regular.  These help to regulate what goes on inside my body.  They also help a lot after a steroid stretch.  

Vitamin fail

I'd taken Valerian root in the past and was really a fan of it.  So I decided to incorporate in my daily schedule again, taking at night with my nighttime meds.  I tracked my daily fatigue and energy levels daily and noticed a trend: on the nights I took Valerian root, I was extremely fatigued the next day and would take a nap.  As much as I love naps, I try to steer clear of them as they interrupt my nighttime routine.  So I stopped taking valerian root because of this. 

However, if you do struggle with insomnia or nighttime restlessness, I would suggest *trying* this but take good notes on how you feel the next day.

Diet

Protein shakes are everywhere!!  It makes sense as protein helps build our muscles and we want our muscles to be cool and lovely; so taking extra steps to nutritionally help them is a plus.  But I've learned you have to be careful of certain protein powders; many are filled with bad ingredients and in some cases, just pure saw dust as filler.  Ew. 

I love isagenix protein shakes and have at least one every day.  It makes me feel like superwoman because they not only taste fabulous, but they make me feel amazing.  I swear by them.  The ones I use are dairy and gluten free.  I dont really have that much of a gluten intolerance but dairy yes.  Because I'm lazy fatigued, I use a shaker bottle and they blend very nicely!

If you've read anything on nutrition the past few months/years, you've probably read about the trend of intermittent fasting.  This month I did a few full days of intermittent fasting (with nutrition products to help keep myself balanced throughout the day) and for the month of February I plan on following a 16:8 IF plan.  

I could tell you all about the benefits of intermittent fasting but my bestie actually wrote an e-book on the topic so I'll let her tell you all about it.  You can find the book here (<<click the link).

Personally I can attest to how wonderful IF has been for me in helping to rid myself of toxins and to help with liver health.  With the medicine that I take and infusions I've had, it's important to help the body in the release process.  IF helps so much with that!

Massage

Massage has been a constant theme during these past few years.  I love massages for the benefit of relaxing my muscles that are usually so tight from contracting and spasms.  

I started going back to getting massages every week.  I go to massage envy and would suggest it only if you can find a therapist that works with you.  Otherwise I'm not the biggest fan of the company; but I LOVE my therapist so I go. (:

I feel like massage would be most beneficial if you went every other day but this is such an expense I dont think I could ever explore that as an option.  Once a week already seems luxurious and the benefits of the massage only lasts at most 48 hours.  However, a little bit of relief for 48 hours is worth continuing.

HEALTH FAIL

I almost deleted this part because it's so unflattering.  But it's important to remember to always spot check your products and that not every granola/crunchy item is for everyone.  
I take great care of my skin.  Because I dont wear makeup on a daily basis (not because I dont want to but more because I'm conserving energy), I want my skin to look beautiful naked.  I use high quality products, I do weekly masks and always wash my face before bed.  My face is my favorite.

One night I decided to try Vitamin E oil as a moisturizer.  I had heard it's great for skin in the winter because it helps to keep dry skin at bay, plus its organic and natural (the brand I used was from trader joes).

I slathered Vitamin E oil all over my face.  I noticed that my lips and cheeks went numb but just told myself that was the multiple sclerosis and didnt think twice about it.

Until 45 minutes later when my whole face started to BURN. Immediately I washed my face, and when I looked up at the mirror I realized my face had broken out in hives.  These hives eventually scabbed over, and then bruised. 

It's been more than two weeks and my face still has bruise marks on my forehead.  Something so small and yet so sad because the whole process probably aged my face by three years.  Plus it hurt like hell and itched like crazy (I eventually made an appointment with my dermatologist and got some high powered steroid cream to help.)  I now am uber careful on not putting anything with vitamin e in it (which basically my whole beauty process has) and have taken great steps to calm the inflammation down.  It'll get better...right?!

Good news is that with a little make-up it looks normal-ish.  (:







So that was January in the highs and lows.  I cant really complain; it was a pretty good month.  I feel like the health steps I took were small ones but I'm proud I stayed consistent.

For the month of February I will be focusing on three areas:

  • Intermittant fasting 16:8
  • Bicycling training (started in January but more effective in February)
  • Draining the Lymphatic system (I'm really excited about this and cant wait to share!!)


(unrelated to health but we all love a good recommendation!)
Things I enjoyed this month:
Movies: Mudbound (Netflix original)
TV shows: Grace and Frankie (Netflix), Madam Secretary


Hope you had a lovely January and here's to a great (and short!!) February!

Wednesday, October 25, 2017

MRI's - tips and tricks for the chamber

MRI - a torture chamber for multiple sclerosis patients.

Just kidding.  Kind of.

Technically, a MRI is a chamber tube that uses magnetic fields and radio waves to develop a picture of a human's insides.  MRI's of the brain, cervical spine, and thoracic spine (brain, neck and back) are taken at various times with MS patients to look specifically at the central nervous system.  For those with MS, MRI's will show white spots that indicate a lesion.  These white spots, lesions, are places of the nervous system that have been damaged.  (Basically....)




MRI's are not only used as a diagnostic tool for multiple sclerosis, but also as a tool to determine the progression of the disease.  If a patient is presenting new or increased symptoms, a MRI will usually be ordered to determine if there is activity present.  

Here's how the MRI actually works:

Tuesday, October 24, 2017

"OMGGGGGG" - a new post

OMGGGGG

The sparkled life blog is back!

But wait...didnt I swear off writing and blog posts February 2016?  Isnt the previous post titled "the last post"? Are we trying to make blog writing happen again?

Yes, to all the above.  

I had sworn of writing on the sparkled life.  Why?  It got too difficult.  I needed a break.  My finger muscles contract making typing difficult.  I didnt want to be known as the "the girl with MS".  I felt I had nothing more to say.  And on and on and on. 

Recently I was at my neurologist where there was a new patient, a woman my age.  She didnt look scared but she did look overwhelmed.  It took me back to when I was first diagnosed and how I had wished I had someone to tell me it was all going to be ok.  

That's why I started this blog in the first place - because I had searched for someone, anyone, with a "story like mine" and couldnt find one.  All I could find on MS were stories from people with less hard symptoms like a numb thumb (any symptom is challenging but where were the people who could no longer walk/talk/use their arms?!?!?) or kids with info on how they "healed" their ms with witchery.  

So, I thought, "hell, I'll write the story".  

That was a while ago.  And I had forgotten that flame, that ambition, until I saw this girl the other day.  I so wanted to go up to her and tell her its going to be ok, that she was going to get through this, that it was going to hurt, it was going to be a bitch, but she was strong and was going to make it. 

Butttttt you cant really do that in doctors offices.  

Instead, that fire ignited in me again.  I thought about all the lessons and mistakes I've gained in the past 5 years since diagnosis and how they just might be able to help others.  And maybe, that girl will get a random facebook message from her aunt with a link to this blog.  And she'll be comforted that shes not alone.  

And that's why Im back.  (: