Sailing and troubled waters

Earlier tonight, my emotions had unexpectedly performed a 360° turn within moments.

I had JUST acknowledged today's date and done some calculations to acknowledge that on Valentine's Day 2020, I have officially been diagnosed with MS for 18 years.

EIGHTEEN!

At 42 years and 9 months of age, that means I have had MS for 42% of my life and overall, I've had a pretty good 'go' of it with smooth sailing.

In 2010, I gave up driving after suffering weeks of motion sickness that turned out to be caused by nystagmus and blamed solely on MS. (I, seriously, wouldn't wish nystagmus onto my worst enemy; it was a horrible experience!) Thankfully, it suddenly cleared up around the same time we discovered that I was pregnant with our second son. Hooray for remission during pregnancy! I've been hospitalized for a few days back in January 2015 for stroke-like symptoms that affected my left side of my body, but turned out to be declared an MS flare. I've been treated with high dose of oral steroids once (because it wasn't convenient to go in for an i.v. infusion late on a Friday and to have to go back in during the weekend) for an episode on optic neuritis where I had intense pain behind my eye and my color perception was dramatically skewed from one eye to the other. I've had a round of i.v. steroids to get me through an episode of other symptoms. All in all, I've fared very well, in my humble opinion.

When I was diagnosed on Valentine's Day 2002, there were just a few disease modifying treatment (DMT) choices on the market. My choices were Avonex, Betaseron, Copaxone and the brand new injection, Rebif. After careful thought, we (my newly graduated Doctor of Pharmacy (now, ex)husband and I) selected Rebif, but my blood levels were very sporadic while on this drug and was making my medical team nervous so, I was quickly put onto Copaxone instead.)

Over the years since diagnosis, I've done daily injections (Copaxone 20), injections three times per week (Copaxone 40), a daily pill (Aubagio) and finally to a twice a year i.v. infusion (Ocrevus).

I was sailing on cloud nine realizing that I've had MS for close to 20 years and have done overall, very well. For years, we've believed that my positive attitude and (reasonably) healthy diet have attributed to my general health and well-being. (I don't eat a lot of processed foods or fast foods. We eat a lot of whole foods, home-cooked. I tend to eat more fruits and vegetables than the rest of my household. I stay well-hydrated.

These past two years, I finally put MYSELF onto the top of the priority totem pole. After 8.5 years of motherhood, I finally took time for myself to exercise. I discovered yoga, water aerobics and Body Flow (yoga, pilates, tai chi) at my local fitness center. I also discovered audiobooks so that I can listen to a book while multi-tasking on housework or while pedaling a recumbent bike. My strength, balance and flexibility have improved significantly. I am stronger and healthier than I've been in years!

I stopped short-changing myself on sleep and beating myself up over the cleanliness of our house. The mess will still be there for me tomorrow. When I struggled to sleep with so many sleep disturbances from my husband and two sons, I made the healthy choice to sleep by myself in a basement bedroom where I can control the temperature, sound and light to my own sleep preference of cozy, quiet and dark. And guess what? I've never felt better!

I had acknowledged all of this, taking my brain to a 'happy place'.

And then, while perusing on a Facebook page for a MS drug, someone posed a question about people who've been diagnosed for MS for 20+ years and the responses suddenly took the wind out of my sails. Of the responders so far, a handful of them admitted that they had done very well for twenty years post-diagnosis, but by the time 25 years had passed, had quickly downgraded to a cane and almost immediately thereafter, to a walker. They discussed having to take out their bathtubs because their legs were no longer strong enough to lift over the side.

I had just been teleported from my 'happy place' to the gloomy part of the Hundred Acre Woods.

I immediately thought about our beautiful bathroom remodel that we did this past year, where we replaced the original tub for one long enough to fit my 33" inseam comfortably seated in the bottom. And then, I started to think about all of the vacations we have yet to plan.

I wondered WHAT TRIPS/EXPERIENCES need to make it to the top of the 'bucket list' to make sure that I experience greatness before I can't do it. (We've loved introducing our family to the beauty of National Parks these past few years.)

A podcast I listened to earlier this week discussed that THESE NEXT FEW YEARS of your life are almost always 'the best' years of your life and how quickly things change as we age. They encouraged TAKE THE TRIP NOW when you've got your health, instead of waiting until retirement when you've got enough wealth, but your health isn't there to enjoy the trip you've been waiting for all these years. While listening to this, I questioned WHERE DO I WANT TO GO?

Yesterday and earlier today, I was listening to a podcast that was discussing running a marathon. For a few minutes, while listening to the excitement of it all, I wondered if I could run a marathon. The podcasters were very convincing that anyone could train from couch-to-a-full marathon. I started to believe that MAYBE I could someday tackle this feat. (I got immediately turned off when they started discussing chaffing issues during training and racing. Also, reality hit when I acknowledged that I was forced out of cross country in high school after getting three stress fractures within a year because my fine bones couldn't bear the impact of running.) So, running a marathon isn't likely on my list, but I can find SOMETHING to put on my list.

And then, I came to a realization, that I've had a DREAM TO WRITE A BOOK for 58% of my life and acknowledged that SOMEDAY, 'IF' I'm no longer able to walk on my own due to complications of MS, I should have plenty of time to work on that writing and recalling years of wonderful experiences.

What's your "IF I'D...." story?

Recently, in reading the book "FAIR PLAY: A Game Changing Solution for When You Have Too Much to Do (and More Life to Live)" by Eve Rodsky, a spark was created by having posed the questions: What's your "If I'd . . ." story? Has a lack of permission from your spouse, partner, family, or friends - either overtly or subtly implied - influenced the permission you give yourself? Have you strayed or even taken a sharp detour from your original vision of what your life would look like today? When you imagine your before-marriage-and-children self, is that woman still looking back at you in the mirror today? OR has she faded into the past?

I let that sink in for a moment, I put a post it note on the page, I jotted it down onto a piece of paper and was eager to reflect upon it when I wasn't so cramped for free time.

What IS my "If I'd..." story?

If I'd stayed married to my high school sweetheart, I'd have lived a childless life of frequent travel where I was being pushed into a career path of nursing that I hadn't selected for myself. He never wanted children, deeming them a waste of money. His high income and rotating work schedule permitted us to have a week off every month of the year to enjoy travel. His desire for more money spoke volumes whenever a customer would ask me, "what kind of nurse do you want to be?" and he would speak on my behalf, telling them that I wanted to work in a hospital because they had the most opportunity for overtime.

If I'd never been diagnosed with multiple sclerosis (MS), I wouldn't have known that my inner strength was so powerful and would have missed out on making many strong connections. There's a chance that I'd have never overcome my fear of needles either. (I passed out during a routine blood test during a school physical and never managed to live it down. I became faint looking at all of the i.v.'s in my cousin's arm when she was bedridden during a high-risk pregnancy.) Never mind being pushed into a path of nursing where I was expected to overcome my fear of needles on the spot. Giving myself daily injections provided a safety net to slow the progression of my disease. I am, however, thankful for the invention of the auto-injecting device so I didn't have to SEE the needle. There are no answers to HOW or WHY I got MS; I haven't done anything wrong to acquire or deserve this. Living my best life, with a positive attitude and good health choices has gotten me this far while I continue to wait for a cure and/or ways to reverse the damage that's already been done.

If I'd stayed in college for longer than three weeks, I'd have likely changed my major three times over the course of my college career since I didn't really have career aspirations at the age of 18. My brain was filled with being a perfect wife for my high school sweetheart; his career path, success and happiness was our focus; never mine. There's a chance that I would have ended up in elementary education or speech pathology, but I can't swear to that fact either. I likely would not have made a lot of friends in college because I had isolated myself to be with my boyfriend every chance I could get.

If I'd not heard a radio commercial on verbal abuse and not been subjected to living with Jeckyll and Hyde for a year, I'd be lacking a push to make a change when I had needed it most. My family and friends had bit their tongues for years, but I was blind. (Ironically, going blind was my biggest fear from MS; somehow, I had already suffered a different kind of blindness for years.)

If I'd not been on a long waiting list to get into nursing clinicals and not been forced to look for an alternate job during this wait time, I wouldn't have met my current husband. Ironically, I was trying to set him up with anyone I knew because he was the nicest guy. Serendipity. Funny how the world works; talk about being in the right place at the right time.

If I'd believed in myself, or had the right people encouraging me along the way, I'd have followed my dream to become a writer without having said "Someday, I'd like to write a book" for more than twenty years. (A few weeks ago, I ran across some writing awards I had received in high school, as well as a college classroom assignment where my 18 or 19-year old self proclaimed:

As for my future, I want to fulfill my dream of publishing a book. I don't know if I will pursue an adult or children's book, either way - my dream will come true. I would someday like to do work with children's books or children's public television. Here, I think I could make an impact on society.

I've used the excuse that I don't know if I'd like to write for children or adults for far too long. I do, however, find it comforting that I'm currently employed as a teacher's aide and making an impact on society with my positive energy.

If I'd have been offended that my grandmother was telling everyone that her newly married granddaughter couldn't ever have children because she has MS, I would have never become a mother. (Granted, meeting Mr. Right years later - who wanted to have a family, also helped my cause.)

If I'd never become a mother, I would have missed out on the challenging and exciting journey that enriched my life in so many ways and taught me a love deeper than I ever thought possible, as well as made me better at my job, working with kids.

If I'd taught my sons to sit down when they pee, there's a good chance I'd have a significantly cleaner bathroom.

I'm thankful for the path that has taken me to where I am today. Thankfully, it's not too late to chase dreams and share my creative voice.

Now, I just need to find the right balance and routines to manage life and make it happen.

One. Two. Both. COMPARISONS - documented January 2020

One. Two. Both. (Comparisons) January 2020

Silas enjoys archery.
Sydney enjoys reading.
Both boys enjoy their weekly snuggle night in Dad's bed.

Silas wears a dress shirt and long tie to school often, but is the first kid to go play outside in the dirt at home.
Sydney wears tshirts and pants (either sweat pants or dress pants: NOT JEANS) if he's forced to get out of his pajamas.
Both boys leave dirty clothes on bedroom or bathroom floors OR next to the hamper.

Silas likes raspberries.
Sydney likes blueberries.
Both boys can devour an entire container of berries in one sitting, without sharing. (Although, if you find a container in the fridge with less than ten berries left in it, Sydney is your guilty party.)

Silas sleeps in silence.
Sydney sleeps with an air purifier on.
Both boys cover their heads when they sleep.

Silas sleeps in undies.
Sydney sleeps in pajama pants.
Both boys love days when they can skip getting dressed, wrapping themselves in blankets instead.

Silas loves LASAGNA.
Sydney loves RICE AND BEANS.
Both boys love LENTIL SOUP.

Silas is in Montessori, level 3.
Sydney is in traditional, 5th grade.
Both boys were invited to be in TSID (Talent and Strength Identification and Development) this year.

Silas has precise handwriting and many backwards letters, resembling Christoper Robin script.
Sydney has sloppy handwriting and a lack of spacing between words where even HE struggles to read his own work.
Both boys spell phonetically, like their dad, and giggle when their dad argues that the sound is different between the words there, their and they're; he insists that you have to LISTEN TO THE PRONUNCIATIONS to know which spelling you have/need.

Silas has a path to his bed, keeping a terribly messy bedroom, despite being in the Montessori program where EVERYTHING has a home and you use only one item at a time. (He stays after school some days to tidy the classroom, demonstrating how particular he can be. Gets some perfectionist qualities from his mom.)
Sydney keeps his bedroom reasonably tidy. You often find him in his bedroom, avoiding tasks, with his nose in a book.
Both boys throw clean clothes back in the wash instead of putting them away.


Silas wears wide shoes.
Sydney wears regular width shoes.
Neither boy can find his shoes easily when it's time to go.

Silas is 8.5 years old.
Sydney is 10.5 years old.
Both boys wish to be left home alone (and would like to gain access to their home chrome books again.)

UPDATE: Recently had their feet measured and learned that Sydney can also wear a WIDE shoe; so much for buying shoes from the Clearance rack at Kohl's now. Looks like we'll be special ordering all of their shoes in WIDE now. Bummer.

The opposite of 'Gone, but not forgotten'

I used to blog on a regular basis. It was a fantastic way to journal and share what was going on in our lives with family and friends when we lived far away. Being a stay at home mom and raising littles gave us plenty of things to share and no shortage of entertainment factor.

Since relocating back to my beloved hometown and being surrounded my a majority of our loved ones (and while our lives got exponentially busier), I got away from blogging. I also went from a stay at home mom to a working mom.

However, after all this time, I didn't lose my desire to write. I just lost my free time by entering the work force and getting busier with life, parenting, Cub Scouts, etc.

I'm still here. Still waiting for SOMEDAY to come.

Still trying to balance housework, family and health. (Although, since moving here, I finally figured out how to make MYSELF a priority on the totem pole. It took me six years before I took time to exercise. I love attending a weekly yoga class.)


Something in my life that truly DOES fall under the 'GONE, but not forgotten' category is my ability to use my right arm in a functional manner. I go in for botox injections on a regular basis now so that the neurologist can tone down spasticity due to MS. Without it brought intense pain where my right shoulder dropped and it physically hurt to breathe.

For a month or so, I've been unable to physically lift my right arm into the air  as if I have a question, or to raise it from the two o'clock position to the twelve o'clock position. It just won't go. Sadly, I am unable to retrieve dishes of food from my over-the-stove microwave, reach my garage door opener from my car visor, or accomplish basic yoga moves. It takes two hands to put on mascara (as I have to use my left hand to raise my right elbow above shoulder high). Sometimes, I even need two hands to brush my teeth.

I'm getting quite good at using my left hand to get jobs done or to assist my right in it's mission(s).

I continue to wait for my arm function to come back while I WAIT FOR A CURE for MS.

I want to...

I want to...

write a book
enjoy snow-shoeing with my family
take a relaxing vacation that includes a sandy beach, an umbrella in my drink and a book in my hand
take a polar bear expedition in Churchill, Manitoba
dance with my boy(s) at their wedding(s)
have financial security so that I can spoil my kids and grandkids the way our parents spoil us

Anatomy of a Guard Mom

I have often been the KEEPER OF THE CAMERA and subsequently, NOT IN PHOTOS. We've got oodles of pictures of my husband with the kids, but very few with THE MOM photographed along-side her kids.

Years back, I made a conscious effort to start using the self-timer more so that I could be in SOME of the photos that we take. I also TRIED to take selfies with my kids, reminding myself that even if it isn't perfect, it is FAR BETTER than no memories.

So, I just went through our digital photo album in search of FAMILY OF FOUR pics and decided that I wanted to continue looking for MOMMY TRIO pics. Alas: a collection!


https://photo.walgreens.com/store/share?via=link&token=68pGxdXNOHqSCRoy64000g/SFO/1001938573060/WALGREENS

Pain and pressure, intensity of color in left eye

Called the neurologist today because I had suffered from pain and pressure behind my left eye for most of the day.

Tonight, with my glasses off and one eye covered at a time, I noticed that my right eye looks normal - with colors warm and rich. My left eye makes the walls have a grayish greenish cast instead of the warm light cast.

I'm getting worked in for an appointment with the eye doctor tomorrow afternoon.

Fingers are crossed.

2017: Nov 28 Letter to Grandpa

Nov 28, 2017

Deer GrandPu,

Thak you For SPenDin

g Time With SYDNey 

anD I. I cant Wate 

until you Can visit 

us agen Becus We 

hav so much f=un with 

you. DiD you enjoy 

Pass The Pig, go Fish, 

or Batel shiP The 

most of all? 

from, SilAs

(age 6)

When his lowercase A's and G's are typically backwards and letters are randomly capitalized throughout. {love this.} Took pics of it before it goes in the mail because he addressed the envelope himself, too.... and they might have a hard time reading it at the post office. (He tried SO HARD!)

For the record, we were going to write "We forgot to go to Culver's for Pumpkin shakes with you" and "we enjoyed some of those on Monday after school" but Silas got teary-eyed and announced "We can't tell him that; that will make him feel bad that he didn't get to enjoy that with us." Then, I questioned, "What if we tell him 'we thought of you while we were enjoying our pumpkin shakes' instead?" Silas insisted that it was TRUE that we thought of him... because we had discussed how we forgot to go there with Grandpa, but he was still pretty sure that Grandpa's feelings might get hurt from missing out on our fun. 

Sometimes, he is a really, Really, REALLY sweet boy!

And those pumpkin shakes truly were DELICIOUS!

Introduction to Battleship

2017: Side by Side Christmas Letter comparison

These two look like brothers! Side-by-side comparison.
{look at those eyes!}