Skip to main content

Letters to the MonSter: Gilenya Day 4

Four days in and no side effects or ill results of my new med  journey. On Tuesday, September 25, at 8:45 AM, I swallowed my first dose of Gilyena after undergoing an EKG. For the next six hours my new friend Eric  monitored  my heart rate every hour. with my kitting in my lap and my mother at my side, the time (though it did not fly) moved by fairly quickly.We talked, I wrote, she worked crossword puzzles, I knitted, and we both looked forward to our reward at Barnes and Noble that shined rightly in our future. (The only sunny spot of the day since we also entertained ourselves by watching the wet deluge that fell over our view of the parking lot...with no relief.)

Since Gilyena's biggest fault is the increase of heart activity, we were anxious at the end of each hour to hear a report on my own heart rate. If there was any sign of irregularity I would need to probably extend my stay to an over night visit. Of course that meant that Momma would get to drive my new car (Bonnie) home and I would probably ever see her again. Bonnie, not my mother. Momma is in love with Bonnie. 
She looks a little like a gangster car; thus named for one of my favorite characters of that time.

After  rather uneventful day, I succumbed to a follow-up EKG, collected a two week supply of my new drug, shook Eric's hand and left with my six-month check up scheduled. 

All was normal other  than the existence of sinus bradycardia, of which I was already aware.

Sinus bradycardia can be the result of many things including good physical fitness, medications, and some forms of heart block. "Sinus" refers to the sinus node, the heart's natural pacemaker which creates the normal regular heartbeat. "Bradycardia" means that the heart rate is slower than normal.

Did you read that definition? Find anything particularly interesting about it?

At first glance it looks as if my heart is the model student of hearts. 

"Sinus bradycardia can be the result of many things including good physical fitness"

Talk about a blatant example of contradiction: "some forms of heart block".

So, which is it? Do I rejoice in my athlete's heart or do I open Pandora's box and look for all the possible reasons for my demise?

Well, my life theory has always been, ignorance is bliss and when in doubt do nothing.

No, I am not a rug.  I am not lying down and you (MS) will not take me down now. Not when I have discovered what I pray to be my medical plan of action.

Gilenya is not my first medical rodeo. In 2001 I began Beta Seron and stayed loyal for nearly eleven years. After a slight break from pro-active MS meds, I tried Tecfidera. Me and Tec did NOT get along, so I went back to the injections and gave Copaxzone a whirl. The injections sites were horrible and forced me to go aux natural. 

Then a fellow Warrior got me interested in Aubagio, which lead me to an unexpected discovery. Gilyena is the first oral treatment for MS and recently as approved for administration to children with multiple sclerosis. Hey, I'm no dummie. If its okay for the little people, it's okay for me. I mean, who would intentionally harm a child. (Please, do not focus on world news right now. Stay with me. My naivete gives me hope.)

So...this is day four of my Gilenya journey and I remain steadfast on the positive track. I'm happy; my neuro is happy that I'm happy; my mother is happy; my PT is happy. We are just one big gathering of happiness. 

If only  I could find peace with 
 life would be good.

Wine Canvas Kid's Hightop Shoes, zipper, shoes, velcro, adaptive, accessible, afo, universal, kids, comfortable, BILLY FootwearThe last time I mentioned the controversy with said pink leg, several folks offered very good advice concerning shoe ware. I ordered a pair of Billy shoes these are fascinating and very practical. I ordered a child's size 5, which translates into a woman's size 7. This slightly larger than I normally wear and  I was certain my brace would zip nicely into my new shoe.

Unfortunately, this did not work. My search resumes. After shelling out nearly $500.00 for the brace, I am not excited (nor willing) to spend any more nonexistent money on a shoe I would not normally wear any way. 

The only female adult Billy shoe is $15.00 more and canvas. Awaiting more info from

Women's Chevron Hightop รข€” Blue Denim, zipper, shoes, velcro, adaptive, accessible, afo, universal, kids, comfortable, BILLY Footwear
It is well worth the time to read the story behind the creation of Billy Footwear. Take a few minutes and look at this inspirational invention.

Enough about me. Tell me about your week.

Have a wonderful weekend, 


Popular posts from this blog

Alien feet?

Okay, so after my initial reunion with social media, I naively imagined today to be more productive. But, no...

For someone who doesn't spend much time perusing sites like Pinterest, my interest has suddenly piqued to the point that addiction be a possibility.

Hoping to find someone of like mind, I instead downloaded a slipper pattern I might knit for Christmas presents (oops, there goes the surprise). It looks fairly simple. Let me know if you give it a try.

And, then, I found this really neat yoga flow outlined for me.
Since yoga seems to be the go-to exercise for us Warriors, I decided to share. That way we do not have to invent our own personalized routine. You're welcome.

Then, I discovered an entire page of memes that put MS in perspective to the causal reader-reluctant  on-looker. And because  this figure is essentially in the child pose... well, you get the picture.

Of course, any information on foot drop always attracts my at…

You are invited to Letters to the MonSter

Well, the sun is shining at last and it appears that spring is sincerely here and hinting at summer weather.    That means I need a summer project; hopefully one that I can complete. With two young adult books   in various levels of completion, you will surely tells me how ridiculous I am to start yet another writing project. but, inspiration has no rules, right?
           The entire month of March MS Awareness Month led to so many
awesomeavenues of expressions, fueling my need to share and learn with 
fellow MS Warriors. So, let's hare. Let's learn. In Letters to the MonSter, 
my goal is to allow fellow Warriors to vent, scream, rant, and exorcise the  MonSter out of our lives. Let's unite in this project to erase multiple sclerosis from our lives. As Leslie Hillburn stated in the preface to my last tome to this disease, "...the ONLY place you will get any support and understanding in dealing with me (MS) is with Other People wi…

MS and children

FDA Approves First Treatment for Pediatric MS On May 11, 2018, Novartis announced that Gilenya® (fingolimod) was approved by the United States Food and Drug Administration (FDA) for the treatment of children and adolescents, ages 10 through 17, with relapsing multiple sclerosis (MS). This is the first disease-modifying therapy (DMT) to be approved for this form of the disease in this age group. Known as “pediatric MS,” nearly all of those diagnosed have the relapsing form of the disease. Children also experience approximately two-to-three times as many relapses as an individual with adult-onset MS. A clinical trial comparing Gilenya to Avonex® (interferon beta-1a) in children and adolescents found that those treated with Gilenya saw an 82-percent reduction in their annualized relapse rate over a period of up to two years. Please see MSAA's online news article, "FDA Approves Gilenya® for Pediatric MS,"for more information. If links are disabled in this email, please copy a…