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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, 


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