Skip to main content

MonSter in the driver's seat

I don't know who I was kidding, but let me take the weight of my fib. Why I though I could complete this trip is even more ridiculous than the decision to to begin it.


 I'm sure I have read multiple books that represent every state in this country as well as all the countries and continents on this planet. At last count (fifteen plus ears go) I kept a diary (multiple) of every book I rad. Sometime I wrote descriptions, some times not. The point is that I was at one time extremely organized in my reading. 

I am still reading. Do't get me wrong. I read every day ,just not in a regulated manner as Read Across America requires.

The original purpose of this blog was to connect with other acquaintances with the MonSter. That has somehow shifted in focus as I attempt to but that demon aside . But he invades my personal space uninvited and reminds me that attention is needed. that I am not a normal person.

This morning I arose early to work on my NaNoWriMo assignment, as I oily have 30,000 words and 8 days left to complete tat particular journey of writing 50,000 wireds in thirty days. I started the coffee (pumpkins spice creamer!) and dropped to the floor for a few minutes o restorative yoga. 

That's when the luster fell out of my morning and and I found myself in full lotus position sobbing huge, crocodile tears of pity. Trying to do so quietly so that I do not wake my teenage son in the next room. He worries. I know he does. Sometimes I find him watching me with this soulful eyes f his, trying to fake his concern but wanting his mommy to be OK. Constantly asking if I am okay wit me constantly constantly assuring him that nothing is wrong.

My body no longer allows me to stretch like it want to. My right leg will not stretch straight.  I cannot curl my right toes. My body constantly shakes from the inside out. Tremors, tremors, tremors...

No, I am not okay. But I am. Know what I mean? When I was diagnosed (2001) I relied upon the love of my then six month old son to see me through the rough days of returning (physically) to  a functional individual. I rose from the grovelling, crawling (literally) slug to being able to hole my child again; to returning to a job I loved; to moving on with my life.

Two weeks ago I called, as I normally do once a month, my specialty pharmacy to refill my prescription of Ampyra ( the only drug I take). the prescription was not refilled due to the need of pre-authorization from my neuro, I have been ordering this med for over a year. I have 7 refills on the label. Why is there a need t repeat a procedure that occurred twelve months ago? In fact, the expiration date is not until October.

Repeated calls and re-directions to the source, three different explanations and with time running out, I make the executive decision to ration my drugs until the powers that be in Insurance/Pharm Land decide to be human again. It maybe a while.

So, as I curl up only living room carpet with intentions of doing something physically beneficial for myself, I instead pound the floor in frustration as I wait for the absence of whatever molecules in this wonder drug to slug me with the ol' one-two.

This is holiday season and I have much to do. Today is bowling day with my mother and I recently splurged on a brand new, personal ball for myself; discarding those alley balls that never fit. Mom is as excited as I am! So, as I approach the lane with new peppermint colored ball in hand, if I fall on my follow through (a weekly concern) I can at least admire the pretty colors that reflect from the rotation of my ball as it happily lands in the gutter. (Yep, I am a terrible bowler, but it's fun to try.)

Also today, I MUST reach another milestone in my NaNoWriMo project or I will never, ever complete my goal. This is non-negotiable. November only comes once a year and this is my chance to complete the next great American novel in  fun competitive way. So, don't tell me to take it easy and mark this chore off my list (if you are squirming to offer advice of any kind, that is). Not happening.

I also have a very important author event on Saturday for which I volunteered to make the able favors for the twelve attending authors. Thank goodness I have an extremely talented niece who has already completed five of them and she is  visiting hopefully before Saturday.

 I look at this brief list of responsibilities and see that there is really nothing to worry about, so none of this should weigh on my suddenly fragile emotions. Except the drug issue. That DOES weigh on e heavily, mainly because of the unknown. Since Ampyra is known the "walking drug" and I remember how awful my walking  gait was prior to becoming an Ampyra addict, I do have some very heavy concern here.

Silver lining alert: I DO have an appointment with Dr. Brick (neurologist) on Tuesday. He cannot fix me but maybe offer some encouraging words before he finds another experimental treat for the MonSter. I'm not sure he gets my sarcasm, but he tolerates me.

Okay, so I have wasted an hour of my time (and less of yours) with this venting session. I haven written about reading because I got lost in West Virginia. Guess it's time to get back on the road. Maybe I'll just stay here in my hoe state. We have A LOT  of fantastic writing and writers here.

And I have a lot of fantastic reason to be happy today. And I will be. In fact, I'm feeling better already.

Yet, this morning, I cry.

Happy Turkey Day,
Lisa


Comments

Popular posts from this blog

BORED? ARE YOU A COUCH POTATO?

                                                                 Bored? Are you a couch potato? If you are already prone to this malady, the following information may be dangerous in encouraging this behavior. This writer is not responsible for damages done. As a result of today's blog topic,  my personal couch potato activities are responsible for the lack of yesterday's post. In an attempt to justify my actions, I blame Netflix (in the name of research).  The best way to prove a fact is to test it, right? Yesterday I definitely put Netflix to the test by watching hours of Safe, a one-season Harlon Coben creation that whetted my love for crime/mystery/action-based entertainment. Harlon Coben is an American author whose work I have enjoyed immensely over the years,  discovering Safe as Coben's break out into film became that much sweeter when The Five caught my attention another series of his own. I will finish The Five today (unless some saves me) so that I can

CBD and MS

We warriors are a resilient breed. After speaking extensively with a CBD enthusiast over the weekend, i finally bit the bullet and bought the "good" stuff...all in the name of research. Things have changed a bit since my first CBD experience, including the flavor. This particular product comes in natural (an earthy flavor), peppermint (self-explanatory), and cinnamon (Yum!).Because particular brand (Hempworx) has ONLY two ingredients : CDB and hemp seed oil.   I decided to document my experience here, so if any of you are interested we can discuss our personal journeys. As you all know, MS is an expensive condition that requires careful thought to additional treatments and related expenditures, most of which are not recognized by insurance companies and/or medical professionals; so, every experience is a financial gamble. I started my new "treatment" on Saturday, October 26, 2019. The instructions direct you to take two-three drops under the tongue twice a

Taopatch = scam?

So, as I sit fuming about not receiving my TaoPatch order within the promised time, this article popped up on my computer screen. I fear I may have been swindled. Oh, well, won't be the first time.                                                        MS patient shines a light on the harms of misleading media messages https://www.healthnewsreview.org/2018/05/ms-patient-ed-tobias/ https://www.amazon.com/Have-Whats-Your-Super-Power/dp/1882658442/ref=sr_1_fkmrnull_1?keywords=i+have+ms.+what%27s+your+superpower&qid=1556457191&s=gateway&sr=8-1-fkmrnull