Multiple Sclerosis Awareness Month: My MS and me

Multiple Sclerosis Awareness Month: My MS and me

March is Multiple Sclerosis Awareness Month. Though I have MS, I don’t write much about it because, frankly, it’s long been just part of who I am, not what defines me. There are far more informative bloggers when it comes to all things MS—my dear friend Cathy of An Empowered Spirit foremost in my mind—so I typically stick with grandma-focused sorts of stuff.

Yet, with MS becoming a bigger (sometimes overwhelmingly so) focus of my life in the time since last year’s MS Awareness Month, I figured I’d spend at least one post sharing the relatively recent changes to my MS and me. Perhaps doing so will put…

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MS and must-see brain matters

MS and must-see brain matters

As many of you know, I have multiple sclerosis, having been diagnosed with relapsing-remitting MS in 1992. I've done fairly well with the condition over the past 26 years, with the help of progressively stronger drugs along the way. In fact, most strangers—and even some folks I do know in person—have no idea I have MS because, for the most part, it doesn't show. It's one of those "invisible" diseases.

As such things go over the years, though, some of the effects are becoming less invisible. Especially to me. Especially those darn…

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My MS anniversary, plus GRAND Social No. 253 link party for grandparents

My MS anniversary!

Twenty-five years ago today, on April 24, 1992, my daughters' elementary school held its annual school carnival. While the girls — Brianna in fourth grade, Megan second, and Andrea first — visited booths with their friends, Jim and I manned the cake walk.

It was a good night.

As we walked to the car to head home, my feet felt like they were asleep. Numb yet prickly feeling at the same time. I figured I'd just been standing too long. The numbness hadn't subsided by bedtime, so I slept with both feet propped on a pillow, thinking that might wake them up.

By morning, they were still numb. The numbness had moved up to my calves, in fact, and a weird and slightly painful sensation of walking on marbles accompanied each step I took.

The day after that, the numbness had reached my knees, the marbles were still underfoot. I called my doctor, who told me it's likely just stress and to relax and everything will be better.

It didn't get better. Each day it got worse. Each day I left messages for the doctor... whose nurse sympathetically relayed that the doctor didn't think there was cause to come in.

By the end of the week, the numbness reached my thighs. Jim called the poison control center, convinced I'd been poisoned by taking too much Sudafed during my recent cold. They convinced him otherwise. Still, my doctor didn't believe he needed to see me, had his nurse tell me to relax and use a heating pad to soothe back and/or stress issues that would surely go away.

By Sunday, May 10 — Mother's Day — I couldn't walk. I had to crawl up or down the steps of our then tri-level home. Instead of celebrating Mother's Day, Jim took me to the emergency room, literally carrying me through the door.

Thank God a better doctor than my regular physician was on call. He immediately ordered an MRI. By Wednesday, May 13, the MRI was read and the several lesions on it confirmed multiple sclerosis ("sclerosis" = lesion).

mri for msMy most recent MRI (2015)

At that time, one doctor told me I'd never walk again. Soon after, as my vision was failing, another...

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Here and now: August 20, 2015

In my world...

clock and book

On my mind...

On NBC News Tuesday night, there was a report of an unscrupulous doctor who had been egregiously knowingly misdiagnosing patients with MS. Such a horrible thing to do. I have MS. BUT, though his actions are unconscionable, that's not what most stuck with me after viewing the report. What did stick with me was a comment from one of the women incorrectly diagnosed. She stated that...

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A brief prayer request

dear readers

I've been conflicted for weeks about sharing this — TMI isn't usually my thing — but today feel I must. Today I'm swallowing a pill that could stop my heart, so I'm writing to ask for your prayers, positive thoughts, healing vibes or any sort of goodness you could send my way.

My MS has gotten ridiculously aggressive and...

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6 topics on which I could speak with ease... even if drunk

 

I belong to several online writing groups. As a freelance writer, the gathering spots of like-minded wordsmiths are where I most often find support, advice, inspiration.

One tidbit I recently gleaned from such a group was instruction on how to determine the topics that one might determine — and promote to publishers — as his or her areas of expertise. The simple solution offered was to consider...

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5 names and 5 uses for Grandma

grandma names and uses 

5 names for GRANDMA:

I've been exercising my brain a bit more than usual the past couple weeks in an effort to counteract some mushiness and muck courtesy multiple sclerosis. Challenging one's noggin' is wise for one and all as we age — not just those with cognitive issues — and my dear friend Ruth and her Cranium Crunches site are a super source of fun ways to keep the brain fit.

Ruth recently shared with me...

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What I learned this week: One way my eldest daughter is not like me

My eldest daughter, Brianna, is very much like me. She and I enjoy the same books, same movies, same music — for the most part (that silly girl adores country music far more than I ever will).

We like the same clothing style, love the same foods, and we have many of the same mannerisms. We even unintentionally say the very same things at the very same times often enough that Jim, upon hearing our comments in stereo — one side me, one side Brianna — regularly responds to us with, "Will you two stop doing that!?"

Brianna

Yes, Brianna is very much like me.

There is one way in which my daughter is so not like me, though. It's something we both learned this week. It's something that led me to thank God out loud upon hearing.

That something is this: Brianna does not have MS.

I'm talking about multiple sclerosis — a drag of a disease I've worried for decades one or more of my daughters would inherit from me... despite there being no proof MS is hereditary.

Hereditary or not, Brianna began expressing concerns about unusually numb feet and oddball sensations in her body about six months ago. Just a complaint here and there, sentiments she'd pass along knowing darn well it was scaring the hell out of me despite my calm and reassuring demeanor at the mentions.

"It's probably just related to your back," I'd say on the outside while fearing the worst on the inside.

See, Brianna was in a car accident a few years ago, rear-ended by a landscaping truck that never even hit the brakes as she was stopped at a red traffic light. It wasn't good, especially for her back. Brianna eventually, though not even 25 years of age at the time, had to undergo emergency back surgery months after the accident but related to the accident. She's had minor pain and numbness and pings and pinches in her feet and legs ever since.

But when those minor pings and pains recently changed to major and began sounding more and more like the pings and pains I experienced before being diagnosed with MS 21 years ago, neither of us could ignore the symptoms. Brianna needed to see a doctor who would confirm or rule out MS.

Brianna saw that doctor Wednesday.

The doctor ruled out MS Wednesday.

I learned Wednesday that my daughter who is very-so-very much like me is not like me in the one way I prayed she and her sisters would never, ever be.

Hallelujah!

Yes, there's nerve damage and neuropathy and issues my daughter — who just turned 31 on Sunday — will deal with the rest of her life, things that may worsen throughout her life.

We both agree that sucks.

Yet we also both agree on this: Thank God it's not MS.

In that way we are very much alike.

In that way we both say — in stereo — hallelujah!

And that is what I — and Brianna — learned this week.

I learned another thing this week (yesterday, in fact), this one far more sad: Our bloggy friend Joan, whom many of you know as Gramcracker and who blogs at Gramcracker Crumbs, lost her husband unexpectedly this week. Please keep Joan and her loved ones in your thoughts and prayers.

Have a safe, happy and memorable weekend. I look forward to connecting with you again on Monday.

Today's question:

What did you learn this week?

What I learned this week: One big thing, one small thing, and one in-between

money

Big thing: I do daily injections to help manage my MS. It's an expensive medication, and I'm very fortunate to have insurance that covers the majority of it. Despite that good fortune, I regularly complain about having to pay my portion of the co-pay — even after co-pay assistance.

A few days ago, my prescription for the medication was called into Walgreens by my new neurologist (see below). For the past five years that I've been shooting up with the stuff, the prescription has been filled by a "specialty pharmacy," not the local Walgreens. The new nurse who called in the Rx didn't realize this, though, and erroneously sent it to Walgreens... who soon contacted me to let me know there will be a bit of a delay while they await delivery of the meds and that my cost for the 30-day supply of injections will be $6000.09.

Yes, you read that right: SIX THOUSAND DOLLARS and NINE CENTS!

I about died. Then I immediately thanked my lucky stars — and God, too — for my insurance. And for specialty pharmacies. Then I canceled the Walgreens order.

Lesson learned: In mere seconds, I realized the importance of shutting up about my measly $35 co-pay portion when I could be paying $6000.09 per month. Or going without. I guarantee I'd be going without, if not for the insurance. 

Small thing: Speaking of my MS — which I really hate to focus on but this is indeed what I learned this week — I met with a new neurologist the other day. I'd been seeing the same one since being diagnosed in 1992. He was (is) an old, old man who finally, after practicing longer than I've been alive, chose to retire a few months ago. We had our last annual appointment a year ago. He told me then (his exact words), "You are a miracle, Lisa. You are one of the few who have figured out the mind/body connection. You are truly a miracle." That was the last time I saw him. Considering his advanced age, I took his exclamations with a grain of salt.

Fast forward to my appointment this week with my new neurologist, a young gal from India (whom, maybe this is crazy to admit, I chose from the list of local board-certified neurologists mostly because she reminded me of my friend Vidya from India). After discussing this and that, my new neuro had me run through a few physical tests. Her response: "You are strong!" Then she had me walk across the room. Her eyes grew big, a smile crossed her face, and she exclaimed, "You are a miracle, girl!"

I couldn't believe it. Very same words from the young neuro as had been uttered by the old neuro.

Lesson learned: I'm a miracle... at least in the eyes of my neurologists.

young brothers

The one in-between: Yesterday my grandsons and I read one of my recent picture book acquisitions while on Facetime. Well, I read it to Bubby. Mac preferred roaming the house and finding a bone for Roxy while I read. Meh... he's two.

Our Facetime session was short, but just the sort of thing I need now and then to carry me through til I hug Bubby and Mac again. I like to think it's the sort of thing they need, too — even if treating the dog to a bone takes priority.

Lesson learned: Though it usually feels akin to pulling teeth to get myself added to my grandsons' busy schedule while 800+ miles away, it's worth it. For all of us, I hope. So I'll keep pursuing Facetime opportunities. Perhaps some Skype or Google+ time will eventually follow.

That, folks, is what I learned this week — though I've not yet fully committed to the "big, small, in-between" designation I've assigned each. Depending on the hour and my mood, the order certainly could be flipped, flopped, turned inside out. Still, those are my lessons, and I'm sticking to it.

As I mentioned last week, I'll be offline Saturday and Sunday, for the most part. I hope to see you back here Monday!

Wishing you a most marvelous weekend! Cheers!

Today's question:

What did you learn this week?

Walk MS 2013 — Photo recap

Thank you to everyone for the fantastic support of my participation in Walk MS 2013 on Saturday. I finished the three-mile course, only pooping out a tad at about the two-mile mark, then finishing strong thanks to the support of my fellow team members, Brianna and Andrea.

Here, a selection of photos from the event — many of the photos taken by team photographer Jim:

Walk MS 2013
Lots to see and do.

 

Walk MS 2013
Family support matters!

 

Toyota Walk MS sponsor
Toyota generously serves as Official Vehicle Sponsor of Walk MS 2013.

 

Walk MS 2013 representatives
MS Society representatives (from left): Chelsea Hixson, local Walk MS Manager, and Kristin Gibbs, Vice-President of Development/Colorado-Wyoming Chapter.

 

Walk MS 2013 start line
Before the start and heading out...

 

Walk MS 2013 finish line
With three miles under our belts (or fanny pack, in my case).

 

Walk MS 2013 Doggy Duds
Even the dogs enjoyed the day.

Again, I sincerely appreciate the support of one and all. With your help we exceeded our team fundraising goal of $500. Thank you for helping make a difference!

Note: This is not a sponsored post for Toyota or the National MS Society; I'm simply appreciative of the positive difference made by both.

Today's question:

When the going got rough and I thought the MS might get the best of me, I kept telling myself to just "keep on keeping on." What is your motto when the going gets rough, physically or otherwise?

Twenty-one years of MS, plus the GRAND Social

MS Walk

Yay! Today is my anniversary! It's kind of a funky one to celebrate, as it's the anniversary of the date that I was diagnosed with multiple sclerosis. But I've done so well, I can't help but celebrate and share.

On Mother's Day 21 years ago, Jim literally carried me through the doors of the hospital emergency room so we could figure out why I couldn't walk and was losing my vision. My legs had gone numb a few weeks earlier, on April 24. I vividly recall the date because it was the night of a school carnival, where I'd helped man the booths at my daughters' elementary school. My feet were numb after the event, and the numbness progressively worsened, as did my vision. My general physician responded to my daily calls about the problem by telling me it was "just stress."

Long story short, thanks to a new doctor, I was diagnosed with multiple sclerosis, told I'd likely never walk and possibly never see again. I was a young mother with young children, and I was scared to death. But I quickly learned the MS diagnosis wasn't a death sentence, that they were (thankfully!) wrong about my walking and vision, and that life goes on. In the past 21 years, I've learned many other important lessons about myself and my world that I wouldn't have without the MS. In many ways, it's been a blessing.

That said, though, it's a blessing I'd never wish upon others — especially not anyone I love, especially because not everyone is as fortunate as I have been in terms of progression of the disease. Which is why I support the annual MS Walk — which this year celebrates its 25th anniversary — and am once again walking in it this coming Saturday. Brianna has been instrumental in getting me to do it, and we first walked together in 2008. I finished the walk, but I could barely walk after crossing the finish line (Brianna even had to bring the car to me as I couldn't get to it). Because of that, it took me several years to get up the nerve to do it again. Finally, last year, we gave it another shot, and Andrea joined us. I did well, we had a great time, and we're doing it again this year.

Here's a little plug for Walk MS 2013:

I tend to shy away from fundraising efforts, even for great causes. But when I wrote about the walk after completing it last year, several readers asked why I didn't mention it before the walk so they could support me. So this year I offer here — with no obligation or expectation — the link to my MS Walk 2013 webpage, where you can sponsor my walk, if you feel so moved. If so, thank you from the bottom of my heart. And thank you all, in advance, for crossing your fingers and sending good thoughts my way as I tackle MS Walk 2013 with Brianna and Andrea at my side. I look forward to sharing with you photos of our success!

Plus, there's another anniversary of sorts: Today's GRAND Social is the FIFTY-THIRD one here on Grandma's Briefs! Thank you for participating once again!

link party

How it works:

  • All grandparent bloggers are invited to add a link. You don't have to blog specifically about grandparenting, but you must be a grandparent who blogs.
  • To link up, copy the direct URL to the specific post — new or old — that you want to share, not the link to your blog's home page. Then click the blue "Click here to enter" text below and follow the directions to add your post and graphic to the list.
  • You can add up to three posts, but no duplicates, please, and none you have promoted on a previous GRAND Social linky. And no contests, giveaways, or Etsy sites, please.
  • Adding a mention at the bottom of your linked posts, such as This post has been linked to the GRAND Social linky, is appreciated. Or, you can post the GRAND Social button anywhere on your page using the following code:

Grandma’sBriefs.com

<a href="/" target="_blank"><img src="http://grandmasbriefs.squarespace.com/storage/GRANDsocialbutton.jpg " alt="Grandma’sBriefs.com" width="125" height="125" /></a>

 

  • The GRAND Social linky is open for new posts through Wednesday evening, so please come back to see those added after your first visit.
  • If you're not a blogger, you have the pleasure of being a reader. Bloggers who link up would be honored to have one and all — bloggers and readers — visit, read and, if so moved, comment, even if just a "Hey, stopping by from the GRAND Social."

Thank you for participating in the GRAND Social!