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Showing posts from 2019

A person with MS walks into a bar...

,,,especially when looking for a restroom.




Once the initial reaction(s) of being diagnosed with MS is over, we Warriors are left to fend for ourselves...forever. If you're not living with the disease, it is no longer personal to many of those around you.

While we are busy arranging our lives around our new companion, the MonSter, loved ones seem to melt back into a daily routine that does not include being ever mindful of furniture arrangement, allowances for extra time to prepare for events, medication schedules, nd bathroom locations.

Bathrooms...the very topic on my mind

We all know that knowing the exact location of public facilities is paramount to a Warrior's existence. Every second counts when thinking about visiting the loo...every second. You know what I mean.

Because I am not and never will be of the male species,  I am addressing the female species when I write this. Every. Second. Counts.

The urge hits out of no where. "Didn't I just go? It's got to be a fal…

letter of appeal x3

This week I will add (hopefully) one more support letter to my appeal to the insurance company in regard to their denying a request to aid  in the payment of the L300 Go. 

After my PT evaluation on Monday, I fear it may be too late for this walking device to help in reactivating the muscle in my right leg. Any progress realized in prior PT sessions has gone south. My right hip is weak, weak, weak. What has that to do with my leg muscle, you might ask. 

Everything.

What the upper body cannot support effects the lower body and vice versa. All of our body parts work together to create a fully functioning unit. My body parts are obviously not communicating and communicating properly.

And then there is the possibility that I am undergoing a "relapse", a "flare", or whatever it is we call the event of heightened MS symptoms. I wouldn't be surprised. My personal life hasn't necessarily been fun lately. Yesterday I messed up the date on a nail appointment and probably …

L300 Go, go, go

Today's the day. It couldn't come any sooner. The MonSter has been kicking my buttocks (isn't that  a fun word?) lately.

Today I will receive my physical therapy evaluation in order to receive a letter from Rebecaa, my friendly PT. I will add this documentation to my impressive (If I do say so myself.) file of wordage that will be sent to my insurance company in hopes of then acquiring 80-20 percent  coverage for the L300 Walk Aid.

I don't know if it's the fact that my brains so focused on the L300 or if reality is on my side. 







has become extremely uncomfortable. A callus has formed on the bed of my right foot and must be "scraped" every few weeks. Fellow baby boomers might remember that Chevy Chase/Goldie Hawn film in which the maid had a weekly appointment to get her feet scraped. That's what this reminds of.

I am very, very concerned about the muscle in my right leg. It is beginning to look "withered" and is constantly cramped all the way dow…

Monday, Monday...

Ya want to know what MS looks like? Well, here ya go.

My head ache began Saturday afternoon (that's  two days ago, it you are reading this post publication) and it's not only still hanging around, it's worse. The sledge hammer imprint makes wonder if I walked into a wall and don't remember. The area around my left eye is actually tender and my vision is blurred.

Ibuprofen doesn't help. A warm cloth doesn't help. Meditation doesn't help. And my cat's constant yammering doesn't help.

So, not only does MS look like a frayed wire,  it feels like one also.

I won't let it get me down, though. I can't. I will slap some duct tape on it and forge ahead. 




Isn't that what we Warriors do?

So, no, I may not look sick (You've heard that before, right?), but that wire definitely isn't healthy. Unfortunately where the wire can be fixed, replaced, or discarded, the MonSter in me cannot. 

So, give me another high priced band aid (Gilenya, Copaxone, Tecfe…

Do something nice for yourself

No matter how long I live in the company of the MonSter, I never get used to it. I get tired of pushing through the day on legs that will not move and feet that cannot feel. 

After treating myself to a gentle yoga class this morning, I could barely move. I forced myself to ride the stationary bike to further stretch my frozen calf muscles and things loosened up a bit, but for the rest of the day I have felt half-baked. My toes continue to curl and my arms are just useless.

Tomorrow I get to bowl (yippee) and just wonder if I can even make it to the bowling alley. I don't figure anyone would miss me, but I refuse to give in to this beast. Even if it means falling flat on my face to the ridicule of an entire bowing alley. Just another day in the life...

On a lighter note, look what our MS Warriors in Belfast, Ireland, do for themselves.  Looks like a neat idea.




It isn't always easy to feel worthy of self-indulgence, but it is really important. I did something for myself yesterday. I…

Writing an Appeal

I am looking for advice. Some  of you know that my insurance denied any assistance with acquiring the Walk Aide L300; mostly on the basis of a lack of clinical evidence that that the device is not necessary to the diagnosis of MS. 

I am now filing an appeal and am looking for suggestions/advice/prior experience in the appeal process.Thus far, my rough draft is equal in volume to a short story. "Cause, y'know, I like to write.

If  there are words of wisdom out there (I know there are), please share with me. If you have attempted to leave comments here in the past and failed, that issue is fixed (Thank you, Rebecca), so I implore you to spread your words here

Thanks in advance.

Have a wonderful weekend,
Lisa







NOW IN KINDLE FORMAT!!!!!!!!!!!!!!!!!!!!!!!!!


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

Is it possible to live disease free?

The following information is the original content of  livediseasefree.com.



...when I was diagnosed with MS 29 years ago, I was told there was no hope for me, and no cure.The experts told me there was nothing I could do to change the course of the disease, and they assured me I would end up in a wheelchair in time. Unfortunately, not much has changed from then to now. Today when people are diagnosed with MS they are usually put on very expensive drugs and still become disabled in time. Most often relapsing remitting MS turns to progressive MS. The MS drugs suppress our immune system and do not address the true cause. Canada has one of the highest rates of multiple sclerosis in the world, with an estimated 1 in every 385 Canadians living with the disease. MS and chronic disease in general is caused by a collection of infections – silent chronic infections. These infections differ from person to person, which is why it is so important to work with someone, be it a coach, an integrative doc…

Day 3 ABCD-CDB

Checking in with current Sertraline weaning...

A long, long time ago (fifteen to be precise), I took it upon myself to rid my system of the mood regulating pill prescribed by my neuro. I just felt it was too much on top of  my Beta Seron. All was well for about four days and then the walls came tumbling down.

Leaving my classroom at the end of the school day, I suddenly became extremely disoriented. My vision blurred, I felt flushed and my head was entertaining a "buzz" described by college friends in another lifetime. My entire body tingled and the sensation of being in a pulsating cave. I was terrified.

Today, in the middle of a doctor's appointment (How many UTI's can one person suffer? If I drink any more water I will drown!), a shadow of that sensation over came me. I couldn't wait to get home and down a Zoloft (official name of the generic Sertraline). 

Lesson learned. Three days are too long for an experiment of this magnitude. Plan B: I'll take Zoloft on …