Skip to main content

This is how I feel









Why do we pretend so much? Is it pride? Is it because it' easier to project a more "normal" existence than to bow to the demands of this ridiculous disease? 

Or do we live in a contestant cloud of denial? If I ignore it long enough it will go away?

For several weeks now I have been experiencing a weird, weird, weirder than weird symptom of spasticity (I must have invented that word, 'cause every time I type it, I am reminded to correct it. Oh, well...)or cramping or whatever in my right foot. Th toe right beside the big one keeps curling under until it has begun to control the entire right side of my body. Whatever that toe wants, it gets. 

There are times when it feels that I am actually walking on the wrong side of said appendage. I am beginning to believe that this is mostly due to the use of my AFO. It never happened until I insisted on wearing that pretty pink leg
every day, all day.  (Of course that is NOT the shoe I wear with it. If you want to talk shoes and AFO's, check out some previous posts. I really appreciate all the insight I can get.)

Needless-to-say, I am not enjoying this new aggravation. My neuro prescribed Baclafan, but I can only tolerate half a dose if I am to remain alert during the day. And, yes, I take it at night. It kinda helped at first, but I not seeing any advanced assistance.

My next plan? I am going to revisit my earlier interest in the Walk Aid . 
It looks like some insurance companies have begun recognizing this device and maybe mine will offer some coverage.
 http://www.hangerclinic.com/bracing-support/adult-le/walkaide/Pages/default.aspx
 Have further questions? Please call 1-877-4HANGER, or speak with your local clinician at your Hanger Clinic or contact Care Credit for more information.

I'm calling them today!

I've been thinking about juvenile MS a lot lately. Probably because my current writing project involves a high school- er diagnosed with the MonSter not long before her freshman year in high school. We think of MS as an old person disease, even though many of us are diagnosed between the ages of 20 and 50 (No,kids, that's NOT old.) 

Meet Breea Ramskill, a remarkable young lady whose story is an extreme example of early on set MS. My biggest question for Breea doesn't have anything to do with the physical part of MS, although THAT certainly appears to be her biggest issue. what I want to know is her reaction to other people's reactions to her apparent physical issues.

For example, I was accused of being publicly intoxicated many times before an official diagnosis.

How do teens deal with this rude and callous judgement?

https://video.search.yahoo.com/yhs/search?fr=yhs-iba-syn&hsimp=yhs-syn&hspart=iba&p=teens+with+multiple+sclerosis#id=6&vid=90837decd3fc62e3ad14dd55561ec8a5&action=view

https://healthfully.com/192303-multiple-sclerosis-symptoms-in-teenagers.html


According to the Children's Hospital of Philadelphia, "Multiple sclerosis affects about 1 in 1,000 people. About 450,000 people in the United States and Canada are living with multiple sclerosis. Although the peak age of diagnosis is between 20 to 50 years old, approximately 2.7% to 5% of people are diagnosed before the age of 16, with the majority of these cases diagnosed after the age of 10.


This may not seem like a very big number, but it's big enough.

In November 2018, my son was treated for something called Miller Fisher Syndrome. It, too is a neurological condition, mostly associated with previous infections. My fear is that he is now targeted to develop multiple sclerosis. He now  has two strikes against him. Since his vitamin D level is chronologically low, I worry (much more than his teen age brain) every day.

I do not want him to live in this iron web of MS.

                                     
That's enough for today. Have a wonderful week!

Lisa






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

Comments

Popular posts from this blog

9/11 Where were you?

Other than in March do I post multiple times during the week, but during my morning perusal of other MS blogs, I came across this very timely blog post. It reminded me early in the morn the significance of this very day: 9/11.
Any major event of disaster prompts us to reflect on the basic question of "where were you?" There is no doubt that you know very well where you were when the planes hit the Towers.
 Standing behind my podium in room 310 at Miller Junior High School, I looked up from my testing manual to glare at the intruder who opened the classroom door. I was giving a test. My students didn't need any distractions.
That didn't stop the neighboring science teacher who came directly up to me and whispered in my ear "The Twin Towers have been attacked. Meet in Steve's office next period."
I struggled to keep an unbiased face and continue my teacherly responsibilities. Several of my students were related to first res-ponders, fire fighters, and Nationa…

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.
https://www.pinterest.com/pin/538250592959842993/

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…

MonSter, beware!

As I scroll through my correspondence this morning, I see a trend unfolding that needs a FIX, big time.

It is so very easy for anyone to become depressed, blue, or melancholy. MS Warriors are even more susceptible to this malaise because the MonSter robs us of things others often take for granted. 


MSLuckDuck, you are a super hero. Life gets us down, for sure, but know that your thoughts and words lift me up every time I log onto your blog.


https://msluckyduck.com/



MS-Understood, I am so happy to find a fellow lover of all things autumn! I lift my pumpkin latte (If I actually had one in my hand:) in salute of your day. The best season ever is right around the  corner.


https://ms-understood.com/


As for me, the tears are a bay today. It is going to be a great day.
MonSter, beware...You do not touch me today!

Lisa