Skip to main content

Posts

I believe I killed my only friend...

If you follow me at all, you are aware of my current blog dilemma. I foolishly thought I could advance my readership and become a big girl blogger by changing over to a more well-known site. After over a week of daily tears, remorse, self-doubt, and abandonment, I have come to the conclusion that change is not always a good thing. 

At this time I no longer now the difference between "disable" and "enable" or "https" and that other "htt-whatever"; I think I may have inadvertently purchased mysterious stuff that will appear on my charge card bill; I have no idea why I am no longer receiving "views" on this site (What the h-e-double hockey sticks did I push?). I am forced to wonder how that MA and four undergrad degrees is helping me now. In fact, I am about to just chuck it all sand revert back to the days of recording in cursive all of my thoughts in my long-hand diary. At least I know I can still do that.

So, if there is anyone out there…

A week long hodge-podge.

Okay, I'm d-u-n, dun. Finished, kaput, finis. No I'm not a quitter, just a realist. I learned long ago to work with what we have and not to reinvent the wheel. Well, that is what I attempted to do this week. It sounded like a great idea to change from Blogger to Word Press. It made sense and I am still not unconvinced that it would have worked better in the long run; but old dogs new tricks and all that...


                             BLOGGERI am staying here where I am comfortable with not understanding the entire blogging process.  At least I can find my home page.

                             TECH FLUNKYIf you are confused as to what I am talking about, don't fret. Your confusion cannot begin to match what I have been through this week. Frustration level over the roof. Now I just want to come back and muddle along as I am wont to do.

                             GOOD NEWSOther than the tech difficulties, it has been a pretty good week. A fairly new MS friend, Jennifer K., …

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…

Back on the grid and acting like Dory.

I have been off the grid for well over a week. No internet, no phone...just nature and some of my favorite people. Days filled with often not-so-friendly croquet games,  camp fires, story telling, and summer rain storms. I did not miss civilization one iota.

Or so I thought...

https://www.youtube.com/watch?v=ixVaAQVEiSM

As soon as I fired up the computer, at 7 AM, with sincere intentions of posting a serious blog about the cautions of camping with in the wilderness with MS, good ol' Dory swam in and took over. Because, y'know, I had to check out free knitting pattern pop-ups, clean out my extensive e-mail build-up, respond to a couple book inquiries, research a bit about a new blog site, post a review request on Good Reads, read reviews of my own books on Amazon, and talk myself out of a couple of purchases while perusing the Amazon site.

So, here I am three hours later with not much to show for myself but a copied image of a Pixar fish and a heart full of good memories of a week …

Preaching on a Tuesday

Three days ago I  had a very brief window of time in which I realized that I was walking regularly. One foot in front of the other, knees bending appropriately, balance spot on. I didn't know how long it had been happening but the realization came over me, I froze. Not for long, though. I needed to keep moving, keep walking. so, I did. From one room to the next and back again, tears flowing the entire time. For the first time in nearly seventeen years my body was behaving as it should.

I was exhilarated.

Upon calming down a bit, I immediately began analyzing everything I had done that day in hopes that I might be able to recreate this miracle.

Next morning I mimicked the previous day's activities. I was still walking better than I normally do, but it wasn't anything like the day before.

This morning I am back to my stumbling, unbalanced, drunken demeanor that has nothing to do with the red wine in my fridge.

MS is definitely a mystery. An unfair, vicious, mean MonSter that lure…

MS AND THE DISABILITY PHYSICAL

THANK YOU IN ADVANCE

Today is the DAY.

In approximately four hours I will undergo the official physical in my application for disability. Even though I realize I have a right to this service, my pride just keeps throwing spit wads at me. I see people who look to be in worse shape than I. I read stories and hear on the news accounts of horrible tragedy and hardship. I pray that cures will found for MS, cancer, heart disease, ALS, depression...

And then I turn slightly to my right and...fall...on my face...for no apparent reason...

After cleaning up the mess I made when my fall knocked over the water glass on the coffee table resulting, in a ruined newspaper and a mound of soggy knitting yarn, I head to the bathroom to tend to the rug burn that scorches up the entire side of my leg and then put  Neosporan and a band aid on the gash on my forehead...all while fighting the tears...of self pity and humiliation...remembering that my gas tank and wallet are on E  and my appointment i…

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…