Keep on washing..............

The soap on my sink caught my eye this morning and I smiled.  In the olden days of COVID-19, you know somewhere around March 2020, I remember watching the soap containers in what seemed like forever, go slowly down as I was home day after day.  I remember ordering soap from friends who were getting my groceries or through my grocery pick ups.  And sometimes soap was so hard to come by.  Also, you should know I'm picky about my soap, if it's not Mrs. Meyer's Iowa Pine, it needs to be in a pink or purple bottle or have that color of a label.  

As somebody with a malfunctioning immune system and very vulnerable to illness, I am not ashamed to say I hoarded soap and probably still qualify as a soap hoarder.  Please don't look in my mudroom cabinet.

But this morning I smiled as I pumped the soap into my hands.  I have basically been contained to my house, besides going out for work since December 22nd.  A little over a month. I can count on my hands the number of people I have gotten to encounter and had interactions with.  For me, pre COVID, this is very rare. I am a social person. I thrive in social situations. I love people but this go round, when omicron beared down on us, something hit me differently and I knew I could isolate at home and be actually ok.  Well let me rephrase, that, it hit me differently after I spent the darn Christmas holiday by myself because we decided I shouldn't fly on the busiest day of the year.   

I am calm. I'm happy and I am as healthy as I can be while I manage my MG. I have a roof over my head, a great job, some family who love me and care about me 🤣, an amazing support system including friends who I consider my family and a dog who might poo in my bed tonight but that's a whole other blog post.  And I've got enough soap to keep washing my hands and making the most of it.

Cherish what you got friends.  Life is short. Over 5 million people are dead because of this virus.  And let me remind you, this virus doesn't care who you vote for or what religion you think might save you.  Get your vaccinations. Get your boosters AND keep washing your hands. 

 

The Perfect Mistake

 

If you follow me on social media, you likely already know this story! When I got home after the MGA celebration last week, I had an email from Union Station that said they would be unable to do the lighting due to an electrical issue. I replied to my contact the next morning and said how amazing the lighting was in person and that I had seen some great pictures. She responded this afternoon that the electrical issue was that some of the lighting kept going PINK. Of course I noticed that last night because if you know me you know PINK if my favorite color, in fact my house is quite obnoxious with PINK. What they thought was a mistake could not have turned out more perfect……

Let Your Light Shine

I wrote this piece for the MGA blog but wanted to share it here also.  My wheels have been turning for revitalizing this blog as I truly do enjoy writing.  I just haven't had a lot of time over the last few years but I hope that will change!

I was diagnosed with myasthenia gravis at age 5. The depth and severity of my disease did not become apparent to me, I don’t think, until I was a teenager. Over the course of the last many years, there have been lots of times where I felt very little hope and that my light had been dimmed. As I have grown older and more seasoned in my journey with a rare disease, I know it is just part of the roller coaster.

However, last week with the help of many dedicated partners, we were able to let our light shine a little brighter when Union Station in Kansas City was lit teal in honor of myasthenia gravis awareness month. Coming off the heels of celebrating our organization’s 60th birthday, the skyline of Kansas City was capitalized with the iconic building standing teal.
As I stood at the Liberty Memorial and gazed out over the skyline, I couldn’t feel prouder of my journey and of the impact the Myasthenia Gravis Association has had on the rare disease community. There are 60 years of rich history intertwined throughout the heartland of dedicated staff, board of directors, medical advisory committee members, professionals, patients, and families who have all worked to lay the foundation to keep the glimmer of hope going.
While the light didn’t shine bright for a lot of people in 2020, a lot of pieces are coming back together as a re-emergence from COVID-19 begins. I hope this glimmer of light is a reminder of all the amazing things that are happening in our MG community right now. There are a handful of clinical trials of new potential treatments. There is one in fact, in the FDA pipeline for hopeful approval by the end of the year, and there are numerous ways to connect with groups across Kansas, Missouri, and NW Arkansas both in-person and virtually. Remember, when your light starts to flicker and you feel you are losing hope, think of the community that surrounds you. It takes a village to fight myasthenia gravis and we are all on this journey together. Keep shining, friends.

Rosé

Not every day will be Rosé but there is Rosé in every day. Might be the cheesiest thing I ever wrote, but goes with the picture! Reflecting on time I got to spend last week in St. Martin. 2020 was hard. It aged me. It changed me. And 2021 has been hard and hectic. But the warmth and the sunshine reminded me that there is change with every season and hope. Cheers to spring, vaccinations and future glasses of Rosé shared with others......

Hardships?

As I was talking on the phone this morning, I noticed a chip out of my brand new wood floor, and then two other small scratches.  A pit grew in my stomach.  How could something like that happen on something so new that I've taken such good care of?!

I've been pretty MIA from this blog for many reasons, but one being because I completely renovated my house.  Someday, a blog post will follow all about that! For nearly 8 weeks, I was living a crazy, chaotic life and am finally just resettling. So you can see how those discoveries would be upsetting.  End that call and get on another when it was abruptly stopped due to a rolling power outage.  (My work phone runs through the computer)

I was irate.  I have stuff to do! My to do list never ends.  For the last 3 years of my life, I cannot seem to get ahead or tackle things like I used to and I am plagued with this feeling of never being complete.  It keeps me up at night!  But as quick as I got mad, I got calm.  We've been living in this frozen tundra for the last 2 days and rolling power outages were predicted as a part of the energy management.  I should also add, we've been surviving COVID-19 for the last 11.5 months and flexibility is the KEY.  I scooped up my ever-not-so- friendly rescue dog and got some blankets and went to the couch.

That ever -not-so friendly rescue dog who LOVES to cuddle under a blanket, refused. She was too concerned in the quiet, with all the sounds you don't normally hear to sit still. So she perched on my leg and growled and snarled and growled some more.  Isn't it so funny how we are desperate for quiet moments and for life to slow down, then it happens and we growl about it?

It wasn't the most comfortable 75 minutes of my life.  I drafted this blog post in my head while we waited.  The house got progressively colder and darker.  And there I sat watching it all unfold.  Luckily for Ries and I, the power switched back on. While we continue to wait for the shower to turn back on, it's a small bump in the road in the big picture of life.  2020 changed our lives, changed our relationships, changed our outlooks. What can't we handle today? So whatever you are facing, keep your face to the sun and remember these days of hardship.  

Adversity builds character.

Watermelon Mules

I know summer has long gone but it's 2020 so why not bend the rules!  I had actually planned to make these in the summer and got the supplies and just never did. Anyway, these are amazing and so refreshing! I'll definitely be making them next summer!

Watermelon Mules

(measure to your preference)

watermelon juice

Vodka

Ginger Beer (I use diet)

Garnish with watermelon

Giving some gratitude

 It’s November and chances are you are seeing more of the word “gratitude” pop up in your social media feeds and in TV commercials.  That is when there aren’t political commercials. 

When the pandemic first started, I had a very good practice of giving gratitude daily and documenting it. It was a way to help keep me organized, draw some boundaries over grieving the situation we were in and help keep my mindset positive.

Gratitude has been hard to find these last few months. Let’s face it. I’m terrified for what’s to come tomorrow. I cannot live another 4 years of this reality TV show.  The shattered America and disastrous mess the man has created and that we are living in has ripped apart my sense of gratitude.  

However, as we were working on a gratitude roll up for some social media for work I took a stab at a blog (for the work blog and tweaked a bit for here) about the effects it can have on your mental health. Then my mom started an ABC’s of gratitude and I started to feel the gratitude fuzzies again!

Giving gratitude in November seems in part tradition because many families and friends can be found going around the table at Thanksgiving sharing what they are grateful for. After all, it’s “thanks” “giving.”  Supper Club friends, I am already sad about missing this in 2020.  One of my best memories is in 2016, chanting "Obama" after every statement of gratitude and the more wine that was drank the louder "Obama" became!  The good old days!

We also can’t fail to mention the positive effect giving gratitude can have on ones health and wellness.  When I’ve done a presentation about “Living your best life with MG,” I reference the book “29 Gifts” by Cami Walker in which she practices giving gratitude for 29 straight days and what she notices about her health as she battles multiple sclerosis.  I’ve also written about trying to follow her 29 days plan. It’s so much fun if you’ve never tried it before!

According to a 2012 study by the University of Kentucky and published in Forbes in 2014, giving gratitude can enhance empathy, reduce aggression, improve sleep, decrease depression as well as people who practice regular gratitude have fewer aches and pains.  Sounds like an easy prescription to enhance your health, huh?

Although I do get it, as somebody who faces MG day in and day, there are days when it would be easier to be a grump and ungrateful.  You can’t deny that it stinks to be living with a debilitating illness.   

But then I think of the world and how much better off it would be if we all took baby steps in gratitude. Even for the simplest things like, enough soap to wash our hands, um hello COVID-19, a person holding open the door, your furry friends using the outdoor facilities instead of your favorite rug, friends leaving a fountain diet coke on your doorstep, a real card in the mail.  Giving gratitude and saying thank you are virtually free. It doesn’t cost you anything to have gratitude.

It’s kind of like looking at a glass either half full or half empty.  A few years ago, I asked a room full of people living with MG what the best thing about having MG was.  Of course that was followed up with the question, “what is the worst thing about having MG.”  The room grew quiet.  I’m pretty sure a handful of them thought I was crazy.  Probably still think that!  Not many people offered input so I spoke something along the lines of this, “I’m grateful for my health, having MG has introduced me to many people I would not know otherwise and I know it could be so much worse.”  I firmly believe that. There IS good in every little thing.

So call me weird, call me crazy, but one of my most favorite things is to hear what others are grateful for.  It brings a smile to my face.  Chances are it reminds me of something I’m grateful for in my own life.  It sparks connections with people you never knew you had. “Oh, Kim Crawford is your favorite Sauvignon blanc? Mine too!”  It lightens the world and takes a load off your shoulders. 

What are you grateful for this year?