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Tecfidera - Days 6 and 7

Okay, it is happening, just as I anticipated; my blogging activity is just as lame as it was before I committed to chronicling (That's an awkward word, if it is even a word at all.) my Tecfidera journey. WVU, my favorite college team and one of my Alma Maters, played in the Liberty Bowl yesterday and demanded my attention. With husband and his good friend (and WVU buddy), we huddled around the big screen downstairs to "tailgate" with our Mountaineers. It was a heart breaking couple of hours, full of ups and downs, nacho chips, cold beer (Yep, I was a bad girl, but did my best to keep things under control.), and comraderry (I have spell checked over and over again and I cannot find the correct spelling of this word, but I know it is a word!)

Anyway, here I am again after taking dose thirteen and on the last day of 120mg installments of this new and mysterious MS treatment. I am very nervous about "upping" the dose tomorrow to 240mg twice a day. I want to have fa…

Tecfidera - Day 5

I was a little worried this morning when I realized that I had slept until nearly 9:30 because my drug routine scheduled me to take my Tec at 8:00; but I swallowed a baby aspirin and prepared breakfast for my son and husband to give the aspirin a head start. After a bowl of Rice Chex and a cup of coffee I took dose 9 and I have suffered so side effects today. It's been a busy day and I am happy with my little accomplishments. I thoroughly cleaned my laundry room and shampooed the rug where the litter box is located. My cat's "space" is clean again. I hope she appreciates it.

When I was younger I used to take on cleaning projects with a vengeance, scrubbing, dusting, vacuuming, shining, tossing old stuff...I have discovered with a few years o me and the inconvenience of MS that I am much more productive taking my tasks in small measure with little rests in between. So, after the basement cleaning, I picked up a borrowed library book and allowed Joy Fielding to suck me…

Tecfidera - Day 4

Well, I am still breathing and am experiencing no weird symptoms other than the horrible flushing that seems to have abated; possibly due to the bay aspirin; possibly due to multiple doses and my body adapting to this new intrusion of chemicals. Such is the way with MS. Everything is an hypothesis (one of my students favorite vocabulary words as they find it comes in handy at times of class argument).

So, to clear up the mud a bit, "Tecfidera [dimethyl fumarate] is a prescription medicine used to treat people with relapsing forms of multiple sclerosis." Got that? Tells you everything needed, right?
Tecfidera is a pill form of MS treatment that is far less painful than the alternating-daily needle of Beta Seron that I once  enjoyed. Just because it is less painful to consume makes it no less scary, though. I mean, putting any alien chemical in one's body is not and had never been on my bucket list of life experiences. I will admit that I like beer and thoroughly enjoy a g…

Tecfidera -Day 3

My son seems to fell a bit better today. The pediatrician advised me to fill him with clear liquids, use Motrin as needed for fever, and adhere to the BRAT diet when his appetite returns. He ate a small ball of chicken broth and noodles for supper and all is going well for now.

I, on the other hand, am tolerating dose four with much more success. Thanks to my FB MSers for their advice of using baby aspirin prior to taking my Tec and encouraging me to drink plenty of water. It didn't really help last night, but today I feel more like myself. Of course, each event will undoubtedly result in a differing reaction. 

After thirteen years of living with MS, my symptoms are becoming more mainstream and recently I have been introduced to random pains that I had read about but not experienced. My drop foot has been consistent since 2001, but so far it has only affected my right foot. Sometimes lately my left foot seems to want to join the party. I use a can more often than not and even when…

Tecfidera - Day 2

Merry Christmas to all!

The flushing began this afternoon hours after swallowing my third dose of Tecfidera. It was awful. My skin (full body) turned a nice Christmas red and I felt like a swarm of fire ants had taken over as a new skin covering. I was hot to the touch and the chills set in for nearly an hour. It is difficult to separate the sensation from that of what my son is feeling with his holiday bout of the flu. Once the heat diminished and the chills abated, I felt certain it wasn't the flu (not yet, at least) and directed my panic to the internet to question other Tec users about my symptoms. It seems this is nothing unusual and I was gifted with several suggestions. I plan to take a baby aspirin twenty minutes prior to my next dose and was told to drink lots of water. We'll see...

Other than my crazy pal MS and my son's flu, this has been a nice family day. I just hope that he didn't give too much of himself to the rest of the family. I am truly sorry that h…

Tecfidera - Day 1

I will be taking a 120MG capsule twice a day for seven days before graduating to 240 MG twice a day. Tecfidera is very much recommended by my neurologist, but I do not know how excited I am about it. It is frightening knowing of the unanswered questions about  what this drug could do to my brain.
Two hours after taking my first dose, I experienced a severe hot flash , which I assume is the flushing side effect of Tecfidera. Accompanying this sensation my skin started burning and itching, especially the back of my neck and my forearms. The skin on my arms became bright red and splotchy. Then I was overcome with a full body chill. Everything but my face felt cold, probably due to the rise in my body temperature.
It was all really quite awful.
Supposedly these side effects will lessen with time. I can only hope. I have prayed about my involvement with this drug for some time and I realize that it is wise to "be on something", as my doctor says, but I am still uncomfortable cons…

Yoga IS a goal oriented pursuit.

Allen Finger, the founder of Yoga Zone, says that yoga is not a "goal oriented pursuit", but I am forced to disagree. When the yogi lives with multiple sclerosis, every little thing is of goal oriented design. I am just happy to accomplish moving through my day with minimal falls, no sudden emotional outbursts, or wetting myself in public settings. There are so many goals to achieve during any given day that adding a yoga session is liked to running the Boston Marathon. In order to accomplish twenty minutes of gentle yoga, I must adopt the proper mindset, physical balance, and proper emotional attitude to reach the conclusion of my evening yoga session.

Upon discovering Yoga Zone Gentle Yoga, I have realized that MS doesn't have to rob me of all physical activity. I have experimented with a variety of yoga routines and I truly appreciate the teachings of Sadie on Veria Network, Ellen Barrott from Prevention Magazine productions, and Baron Baptiste from the National Multi…

"Love you. Thanks for all the goodies."

It's been a week since the memorial. It was two weeks ago when I last talked to her. I think I am ready to talk about it; but I will never be ready to accept it. Kind of counterproductive in the reality department, don't ya think?

One cannot die from multiple sclerosis. That's what they tell us, but I believe these words less and less. Ironically her last words to me were " Love you.Thanks for all the goodies!" My last words to her were "we don't do this." Real inspirational, huh? I didn't know what else to say to her. I didn't know this was  my last  opportunity to visit with her.

At the memorial service, her family did not wish for anyone besides the pastor to speak. I respect that decision and am actually glad for it. There were so many people there. We had to mourn in our own way. I need to talk about her now, though. She was my friend and little sister; related not in blood but in an age-old bond developed when I was dating her brother …

This is a sad, sad day.

When twelve year old Abigail Van Buren Masterson (yep, named after the infamous advice columnist) is told that she is going to attend the same school and live in the same town FOR-EVER, she is thrilled. This means that her BFF might actually take human form and she will no longer need to rely upon her diary to perform that duty. Wow and viola! She and her younger brother will have their own bedrooms and life might be normal. But, then she discovers that the reason for this magnificent life change is that her mother has an incurable disease.
This incurable disease is Multiple Sclerosis.
Last night the world lost a wonderful person to the complications of MS. The world is a darker place without the light and joy that my friend Jamie offered with her genuine smile and positive presence.
Forty percent of all sales of my YA novel Abby will be donated to the National Multiple Sclerosis Society in honor of Jamie (Feltz) Riley. 
Thank you, Jamie, for being my friend.



This is a sad, sad day.




Follow …
Y'know, there are no guarantees in life. That is not breaking news, but the reality of it just stinks. No one promises that we will grow old to see our children graduate, marry, procreate. There is no security in knowing that our friends will always be only a phone call away. Our favorite authors cannot be depended upon to roll out our favorite characters on a regular schedule nor can we depend on favored entertainers to perform for us. And summer cannot go on "just one more week."


Two weeks ago I could never imagine such a drastic change in my own life. When I discovered that one of my oldest (not chronologically; she's actually mush younger than I) friends was vacationing in the hospital for her third visit in a month, I immediately hit the highway in hopes of offering positive energy and words of encouragement. Jamie was diagnosed not long after I was, but with a much more emphatic announcement. I actually felt guilty visiting her, knowing that my MS had never rea…

Nasty, wicked bike!

I have fallen twice today. Both the same way, in the same room, and injuring the same body parts. The side of my right foot is bruised, swollen and sore. My left knee, still raw and skinned after falling off of my bicycle yesterday (yep, that innocent looking adult trike at the bottom of the page), is now bleeding anew and my elbows are throbbing. I am very, very weary of falling.

And I do not just fall, daintily to the ground. When I fall I get my money's worth. One minute I am standing just fine, with not a worry in the world...and in the next second I am propelled through space and am on my knees, my butt, my face, my back...wherever gravitational force takes me. It's as if there is some invisible magnet that draws me to the earth, sometimes in slow motion; often with the speed of sound. It is unpredictable, unnerving, humiliating, and frightening. I never know when it will happen or what my personal response will be.

Already NOT looking forward to returning to my teacher …

Finding the Neurologist for You

A French neurologist named Jean Martin Charcot was the first person that actually recognized Multiple Sclerosis as a disease in the year of 1868. That was probably a very forward thing to do, considering that as recently as the 1950's individuals were still being institutionalized for their inexplicable symptoms. I can only imagine the number of men and women who were condemned as witches during those days in Salem. (This actually sounds like a good research topic. Hmmm...)

I thank Jean Martin Charcot, though, for stepping up to the plate and announcing to the world that Multiple Sclerosis is a documented disease. For anyone who was aware of this proclamation at the time,I am certain that their appreciation was strongly felt.

Unfortunately, even with medical documentation, MS is still ridiculed as a "catch-all" for all of the unexplained symptoms and actions associated with the mysteries of the condition. I am so excited to be seeing my original neurologist in a few weeks …

It just sucks.

This morning I awoke with the same gluey eyes that  greet me every morning. Between allergies, age, an over active sinus condition, and macular degeneration in the left eye that plays with the cataract in the right eye, it is not surprising that my vision is not totally clear. But today it was different. Even after applying liquid tears and blinking to cover every nanno section of my eye balls, my eyesight was still incredibly fuzzy. I put on my eye glasses for reinforcement and found no improvement what so ever. When I closed my left eye, I had a fairly good clear view with my right eye; but when I alternated this little exercise, my left eye absolutely refused to clear at all.
This just figured. My prescription changes yearly if not more frequently, but I just acquired new glasses two weeks ago in preparation for the new school year; plus it was time for the yearly change. My insurance would NOT agree to another eye exam without me even inquiring. And the deal I got on my new frames…

Oww!

It is such a shame that our MS symptoms and side-effects do not come with an absolute warning so that we can plan our daily events and life experiences around the inconveniences of the disease. It would be so very wonderful to at least be able to depend on a fair indication of an exacerbation or annoying symptoms so that our social and professional calendars ran more smoothly.
My brother’s girlfriend has a talking parrot who often gives him all the parrot love that she is capable of, rubbing affectingly against him, perching on his shoulder, or staring adoringly on to his face. When they first became acquainted he fell under her spell and didn’t realize that her attention was a false sense of security in her devotion. Aftera few “bird attacks” his attraction to her waned drastically and Abby was relegated to her cage when he was in the room. He learned that there is nothing as painful as being bitten by an irate parrot. But then, he started paying close attention to the bird’s behavior…

Flop Drop Giggles

Just call me an over achiever, but I have experimented with a variety of drop foot eliminators, including one of those wire-controlled devices to elimate my drop foot and I just could not get along with it. I think it is probably a wonderful tool for folks can afford it or that their insurance recognizes it as a viable treatment for MSers. Mine, unfortunately, does not; but, I could diverse very quickly onto the topic of what the "real" world views as important. We have all experienced this. Because we cannot understrand MS and because it cannot be categorized in black and white terms as far as definition, then there is no true documentation to make it a "real" disease and funding for this imaginary condition is not justified with the powers who hold the purse strings. Whoops! Showing my cynical persona. Sorry.
It's me. I'm back; Miss Positive.
This Flop Drop thingy sounds like an interesting and affordable idea. Sure, it's another money maker for some…

Purple Dragonfly Award Winning Book!!!!

Abby Wins Coveted Purple Dragonfly Book Award

CHANDLER, AZ (June, 2014) – The judges of the Purple Dragonfly Book Awards contest, which recognizes excellence in children’s literature, have spoken, andAbbyby Lisa A. McCombs, won second place in the YOUNG ADULT FICTION category. Lisa teaches eighth grade reading at Monongah Middle School and is the author of two additional young adult novels, Raspberry Beret and Opening Pandora’s Box.Abby, the first installment in this trilogy, is also a Reader’s Choice finalist for 2012 and 2013. All three novels areavailable in hard copy as well as e-book format on Amazon and Create Space.
“Winning any place in the Purple Dragonfly Contest is a huge honor because in order to maintain the integrity of the Dragonfly Book Awards, a minimum score is required before a First or Second place or Honorable Mention will be awarded to the entrant – even if it is the sole entry in a category,” explains Linda Radke, president of Five Star Publications, the sponsor o…

Yoga is NOT for sissies!

What a perfectt sentiment to what is on my mind today! I have played around with all types of exercise all of my life and when MS presented ist own challenge to me, I realized that my exercise regime needed to take a serious turn from high impact aerobics to more manageable options. "Yoga!", the spealists urge. "Yes, yoga!" my neurologist choruses. "Yoga is the thing!" all of my research indicates. "Namaste", my cat's wise eyes tell me at the end of my yoga routine. To this point, I thought I was doing okay in my yoga practice. Not too strenuous, not too anything, really. I realized that I was doing more observing than actual participating when I tuned in to Sadie Nardini (Rock Your Yoga) on the Veria channel or invited Charles from my Yoga Zone cd collection into my living room. Sure, I stretched; I rocked; I did what ever I was told until it became too challenging for me to continue. Then I just folded into a child's pose and thought …

“Culprit in skin damage is exposure to sun”

So, while reading the newspaper this morning my eyes fall upon this headline. I find it ironic since that very sun is what is plaguing me today. It is a beautiful summer day in West Viirginia and this evidently is praying on the minds of a group of my teacher colleagues who are getting together next week for a day of fun in the sun. We are to meet at a swimming pool in a neighboring town for some laughs and visits and then off to a popular watering hole for dinner and drinks. It sounds lik so much fun. I used to partake in these randezvous quite often in my early teaching days. The memories flood my socially hungry brain and I see myself young, lean, tanned and ready to play with my pals.
Sure, I reply to the FB invite. I’ll be there!
Then I step outside and am instantly slammed to the ground bythe heat. My legs get weak and my head spins. And that is on the shady premises of my back porch. What will it be like at a swimming pool in direct sunlight? I panic. I really want to see my budd…

MS isn't always the worst of the bad things...

This is my week in a nut shell: It's Spring Break (yes, we didn't get enough days out of school this year:) and my family normally spends a few days at our home away from home...Bemis, the Center of the Universe. This year, how ever, I get to stay home for most of the week, entertaining doctors. For some time, I have suffered weird chest pains that was orginially diagnosed as some kind of chest inflammation that required 3 daily doses of high power Motrin. It helped for a while but after several months I became nervous about the amount of Motrin that my body was ingesting...and the pain was not going away. So...I took my concerns back to the physician who has now decided that a pain pill (when needed) is more the ticket, in addition to a muscle relaxant at bed time. It's done wonders, but a further precaution is the heart monitor that I am wearing for the next 24 hours. My heart rate is (I guess) alarmingly low, (Isn't that a good thing?) so I have been referred to a c…

Let's get positive!

Do not let the behavior of others destroy your inner peace
English Quotes: http://goo.gl/udl654

So, last week I devoted any postings to negativity, and I kindof forgot to let go yesterday as I continued my venting about the unfairness of MS. I titles my post WHY? and I wish I had given this more thought.

Who am I to question my life and all that it holds? I love my life. If I am supposed to have an incurable disease, I guess that's just how it is. No, I don't necessarily like it; but, it is what it is.

I also do not like that I have married three times and that I will be sixty years old when my only  child graduates from high school.

But, guess what? There is a reason for all this. I am now married to the most wonderful person I could ever ask for. He supports me and looks after my needs. He is a wonderful father and protective husband. I wish I was a younger mother, but I really believe that God saved this experience for me whedn I needed it most. The birth of my son pretty m…

Why?

I awoke in the middle of the night, thinking about my MS and how it has affected my life and the lives of those around me. I really believe that the effects of this disease began long before I was aware of its existence. The tingling in my fingers and arms when I learned to play raquet ball in college and even prior to that when I used to fool around with tennis. Those many times when I inexplicably fell with no warning or dropped items without any knowledge of letting go until the damage was done. The experiences with memory loss that were in no way hrelated to late night beer bashes. These were all red flags begging for attention. I just had no idea what kind of attention to offer.

During my latest research I found that an estimated 1 in 3 children are diagnosed with MS symptoms. Does that mean that I might have been carting around this inconvenient condition for much longer than I coul guess. I reallyh do believe that my hand numbness and aversion to heat might have been early MS i…