Sunday, October 14, 2018

IVIG and MS - Plasma for one

I recently had an IVIG infusion and got a lot of questions about what IVIG is and how it is used in relation to Multiple Sclerosis.

Great questions. 

I'm not entirely savvy on IVIG usage medically, but I can give a non-technical little overview.  With the help of google and some medical documents of course.

So first, why we choose to use IVIG.  In my DMD history I've used Rebif, Tysabri, Tecfidera, and Rituxan.  I have also used Plasmapheresis as a treatment.  Rituxan was my latest DMD and I really did give it a good try.  My body has a hard time with all drugs but rituxan, damn, it was brutal.  Quality of life was not worth it.  And, we couldnt confirm if it was or was not working.  It was an easy decision for me to be like "no thank you, no more".

I went with no DMD medicine or treatments for 10 months and though I wouldve loved to go further, my doctors advised me to consider a treatment.  I agreed.


I received IVIG at my MS clinic's infusion center at a hospital in downtown Pittsburgh.  The nurses were fabulous and got a IV line in one try. I love nurses!

Wednesday, October 3, 2018

My Advice for Those Living With Multiple Sclerosis

Back in June I worked with Healthline to film a few videos.  One of the videos we did was my advice to those living with multiple sclerosis, especially those recently diagnosed.

This is the finished product.



Click here for final video.


Monday, September 24, 2018

My Teeth be Shining! - Smile Brilliant Collaboration

Use code thesparkledlife to receive 15% off!!

Since being diagnosed with Multiple Sclerosis 6 years ago, I have found a new appreciation for my teeth.



Why?

Because they are the ONLY part of my body that is still working, functioning, and looking babe. (:

So I take good care of my teeth.  Whitening my teeth has always been something I've done before a big event or just to give myself a little self-care love.  I've used teeth whitening gels from CVS and more often, crests whitening strips - both of which I loved. 

However, they couldnt get all my teeth.  My teeth are very "smushed" and I want every nook and cranny of my teeth to me the same-ish color.  I dont ask for much. (:

So when Smile Brilliant reached out to me for a collaboration, I was 100% on board.

Thursday, August 9, 2018

Ice Ice Baby - Koldtec Cold Towel

(for the month of August, Koldtec (https://www.koldtec.com/) has given me a promo code for friends and family - SPARKLE16 - for $10 off, an extra strip of ice (worth $6), and free shipping Canada and USA)



So with Multiple Sclerosis, heat is no bueno.  Absolutely not good.  It's called Uhthoff's Phenomenon (please dont ask for how to pronounce that word) and it's something that we learn how to manage quickly.

Uhthoff's Phenomenon is when someone with MS overheats; the overheating then causes a worsening of symptoms.  It literally just feels like your body is shutting down; my vision goes, my legs go, my arms go, my speech goes.  It takes a few hours to a few days to rest and recover.  It's a bitch.

There are a few ways to prevent this: stay inside (: or stay cool.  I like more the stay cool techniques as I love summer and being outside.  So for six years I have lived off of ice packs, usually being as classy as can be and stuffing them down my pants and up my shirts.

Then, I met the company Koldtec (https://www.koldtec.com/).  We connected over instagram - they noticed my love for ice and I noticed they had ice.  Oh baby.



Thursday, July 12, 2018

Medical ID bracelet - but like it's cute

When I was first diagnosed, part of my discharge packet was being told to get a medical ID bracelet.  I googled.  I hated.  I ignored.  Sorry, but life is too short to wear ugly bracelets.

Then I met American Medical ID.  And basically fell in love because ALL of their products are actually "cute" and didnt stand out as a "hey Im sick here's who to call" bracelet.



Tuesday, July 10, 2018

CBD Oil Be Lit

CBD oil is kind of the craze right now.  For a white I was skeptical, mostly because I saw SO many network marketing companies selling these products on instagram.  And of course I researched like heck and read so many places that these items were often diluted or didnt have cbd oil in them at all.

I stayed away.

And then a while ago I was introduced to Joel and Theramu.  He sent me some cbd products at kind of the best time to try them - I was have a MS hug flare that just was sticking around for weeks.  I was desperate so figured what the hell.

Damn it - they provided relief.


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!!