Can you believe it's been an entire year since my official MS diagnosis? June 27th will forever stand out in my mind a little bit I guess. Not everyone would consider this a "happy" anniversary, and this time last year was a tough day for sure, but simply having a diagnosis and being able to be on a treatment plan is something to be grateful for.
I thought about a lot of things today as we traveled home from our little trip to Wyoming. I thought about how it certainly does not seem like it's been a year... I still feel like everything is pretty new. I thought about how many things have changed for me, but also how many things I have been able to keep the same by simply making some small adjustments.
I thought about my dear sweet hubby and how much crying and frustration he has had to endure from me. I thought about how much support he, my kids and my parents have given me. I thought about the special friends in my life who have reached out and loved and encouraged me. It's a well known fact that people don't always stick around when they find out you have a chronic illness! I'm so glad for the amazing people in my life that have.
The past year has definitely been an adventure of sorts, but even though it has been a bit challenging at times, it has been a journey that has taught me more humility, compassion, empathy, gratitude and love than I thought possible. Now to see what the next year brings us!
It's been a fun week. My cute hubby decided a few months ago that he wanted to certify in Tai Chi for Arthritis and Fall Prevention so he could teach classes to his geriatric patients at the facilities he works at. He first learned Tai Chi from one of our neighbors in Maryland, Doan Ping, who used to do it every single morning at the park in our apartment complex. It's been over 12 years since he practiced with Mr. Ping, so after doing about 60 hours of review and preparation, he signed up for the two day certification seminar in Casper, Wyoming and I decided to tag along with him.
Things started out a little stressful as I was supposed to get my new shipment of meds just a couple of days before we left. Every month Aetna overnights me a new box of 12 shots in a foam cooler with frozen gel packs, but they won't ship the new box until I only have one or two left. I then have to spend an entire day at home as UPS will only give me the time window of 8am to 8pm for delivery... super convenient. Luckily, I can usually work from home for that day.
I was working from home waiting for the meds to arrive Thursday when I got an email from UPS around 2pm that my delivery had been rescheduled for Friday. I had two issues with that... first, the gel packs will only last so long so if the meds are too late they are compromised and can't be used. Second, I couldn't sit home another whole day waiting for the meds to arrive. I called UPS and they informed me my package had accidentally been rerouted to Roanoke Virginia... um, how does that even happen with an overnight package? The supervisor assured me they could get it to me the next day and that she would call me later and give me an update on the progress. She never did call me back, but I was able to get Lois, (my MIL), to stay home Friday while I was at work and then I got home about 3:30 to relieve her. Except suddenly I got ANOTHER reschedule email from UPS for Monday.
At this point I kind of lost it and flipped out. We were supposed to leave town the next morning, I had no shots left to take with me which meant I would be without medication while we were gone. The supervisor lady had never called me back, at this point the medication would probably be compromised AND this was $9000 worth of shots that I wasn't sure my insurance company would reship! After spending yet another hour speaking with another, different supervisor on the phone and not getting anywhere other than him saying basically the same things the lady had said yesterday and telling me it was in Roanoke and they would do their best to get it back to me by the next morning, I texted Mike in a panic and he suggested I just call Aetna.
Aetna, unlike UPS, were absolutely WONDERFUL. As soon as they answered the phone I had a bit of an emotional meltdown, but the sweet woman on the other end of the phone calmed me down so quickly and let me know that everything would be fine and they would get everything sorted out. She then told me that they had just gotten a call from UPS who had told them they believed they had lost the package, (not what they had told me), and that even if it resurfaced, by the time I got it it would be compromised. She then promptly set up another shipment TO MY HOTEL so that I would have meds while I was away. She was the most warm, compassionate woman... I was so relieved after speaking with her that I just started crying. What did I learn from this experience? MAKE SURE YOU HAVE ENOUGH MEDS FOR ANY TRIP AT LEAST A WEEK AHEAD OF TIME!
Thanks to Aetna we were able to leave on time the next morning for our little trip. It is a 6 1/2 hour drive to Casper Wyoming, which is a LONG drive for someone with MS, but our new Santa Fe was a lifesaver! I never thought I would use the heated seats because heat always causes that pesky zinging down my spine... however, after an hour and a half, my body was starting to feel it and I wasn't sure how I was going to make it another 5 hours. At this point, my smart hubby put on the heated seats, but then blasted me with the AC. It was the PERFECT combination. The heat relaxed my muscles and the AC kept me cool. I was absolutely fine the whole rest of the way!
If you have never been to Casper Wyoming, I have to be honest... there is very little to do there. However, the people who live in Casper are some of the nicest, most friendly people I have ever met in my life. At first I thought it was just our hotel staff, but it didn't matter what restaurant we went to or who we talked to, they were so incredibly kind. We also noticed the lack of aggressive driving... people were just very "laid back" there.
We wanted to explore the area a bit, so we had scoured the internet to see what we could find to do. I had found a cool little pioneer museum we could visit, (The National Historic Trails Interpretive Center), as well as a walking trail with a waterfall at the end, however other than those two things, there was not much more to see! We spent a lovely couple of hours at the museum learning about all the different "pioneer" trails for the western expansion... Oregon, California, Mormon and Pony Express.
We also enjoyed walking up to the waterfall and exploring around there a bit.
However, once that was done we were literally stuck for what to do next. It was in the parking lot at the waterfall trail head that we came across an article called "The Seven Wonders of Casper" which peaked our interest. It was a funny little list of seven quirky things you could find in Casper, so with nothing else to do, we decided to spend the afternoon finding all seven "wonders." In no particular order they were:
1. The Echo Chamber: If you stand in the middle, you hear everything you say being echoed around you, but everyone outside of the chamber just hears your regular voice.
2. The "Eggbeater" which literally is this tall white tower that has three legs holding it up. AND it's part of the strangest looking Wells Fargo Bank I've ever seen... a broken egg? The tower apparently used to have a Wells Fargo sign attached to it at the top, but the wind made it too dangerous, so they had to take the sign down.
3. Lookout from Casper Mountain. This really was a beautiful view.
4. The magic mirror. I'm not gonna lie. We could not figure this one out to save our lives. There was definitely no magic for us!
5. The spiral stairway. Down the back alley of a row of shops, there was this magnificent stairway that takes you... absolutely no-where. Confession: I would not have even walked down here if hubby wasn't packing heat. It seemed like the perfect spot for the scene where Batman's parents get shot. :/
6. The clock that no-one see's. We literally had to drive up a parking garage to the third level to see this clock that had been painted on the outside of a building down the alley next to it. My guess was it was painted before the garage was erected. But now it's just where no-one can see it. (Unless you are in this parking space.)
7. Gravity Hill. This was the one "wonder" that we actually found pretty amazing and really got a kick out of... I'll let the video tell the story:
At the end of the day, while we didn't find the 7 wonders of Casper exactly awe inspiring, we did have a fun filled afternoon with a lot of laughs. Ironically, that evening we found our own 7 wonders of Casper, most of which were in the parking lot of the same restaurant:
By the way, my hubby completely passed and is now certified to teach Tai Chi for both arthritis and Fall Prevention. I'm so proud of him! He swears he is going to get me doing this to help me with my balance issues. We shall see love, we shall see. :)
My hubby is not on social media... I added his name to my Facebook and Instagram accounts so that people can get in touch with him if they want to, but he absolutely never gets on. He hates social media. He thinks it's "a bunch of time wasted on garbage... unless it's your family," and he "(doesn't) need to hear if someone is taking a crap," (speaking of the people who post 100 times a day on every little aspect of their lives.) He has some good points. There are definitely good and bad things about social media.
The good? I like seeing pictures of my family who don't live close and hearing what is going on in their lives. I like to see what my kids are up to when they are not home. I like to read articles of interest to me, like articles about MS from the National MS Society and MS Lifelines, or watch quick and simple recipes being made on Buzzfeed Tasty. I like to read uplifting quotes and even look at cute, funny videos of adorable baby animals sometimes.
My hubby for some reason thinks I am on social media all the time, (I think he forgets that my kindle is also on my phone... as is my favorite game right now... "word cookie", pinterest, my email, my scriptures and my photographs which I absolutely LOVE looking at, just to name a few things), so when we watched the prophets devotional a few weeks ago and he issued the challenge to the youth to take a seven day fast from social media, (or as he said... take a break from the fake), Mike pretty much turned to me, laughed, and bet me I couldn't do it.
First, don't ever tell me I can't do something because I am VERY stubborn and will do it just to prove you wrong. (Ask my mum who told me there was no way I could complete the 50 mile hike with the scouts because I had to drive the car to the end of the street just to return a video.) Second, I'm genuinely not in to social media like he thinks I am so it just isn't as terribly hard as he thinks to give it up for a week.
I only have two social media apps... Facebook and Instagram. I don't have Snapchat, Twitter or any others on my phone. To stop me from accidentally opening them, I put both of the apps on my third page of apps in a folder called "Social Media Fast." Here are a few things I learned that week:
I frequently open social media out of habit, just because I'm waiting on something or don't have something planned or feel bored.
The very first day I noticed that if I had free time or was sitting waiting for something or someone, I would automatically pick up my phone and go to open Facebook or Instagram. Why? This was a habit that I was able to break fast and that I will not allow myself to get in to again.
I enjoy experiences more when I'm not worried about getting the perfect picture to post or the perfect quote to share.
I sincerely enjoyed being in the moment and not worrying about other people knowing what I was doing. I did things for me and my family and not to impress anyone else. I didn't waste any of my time that week interrupting the experiences I was having wondering how I should post it... I just lived in the present with the people I love and I was MUCH more focused on them!
I had more free time.
I learned that all the little spurts of time I spend having a "quick check-in" add up to more time than I was aware. I spent more time thinking about how I could serve people around me, reading my scriptures, doing things I enjoyed like reading a book, sitting on the swing with my hubby and talking to him or playing games together. I used my brain more and actually tried the lost art of just sitting and "thinking."
I realized how often I lose sight of the false reality that social media can create in my head.
Social media can cause me to compare my worst experiences or problems with other people's "highlight reels." Instead of looking to see what other people were doing or if things I posted were getting "likes", I found myself reaching out more to REAL people in REAL time and actually talking to people more. I visited neighbors and family a couple of times, I texted people I hadn't spoken to in a while. I was more present in my own home with my family.
I was happier and much more calm!
I truly was. I didn't get frustrated by keyboard warriors or passive-aggressive cries for attention. I didn't think about what I might be missing out on or worry about what people were thinking about me... I was genuinely less depressed and noticeably felt more gratitude through the week for the blessings in my life and the real people who take the time to check in with me and genuinely care.
I'm not saying there isn't a time and place for social media. I missed being able to check out events and pages I am part of. I missed seeing what was going on in the lives of people I honestly do care about. I missed laughing at things my kids tag me in that they know I'll find funny. However, one of the best things I have ever heard about social media is that we should treat it more like dessert than the main course. Most of us love dessert but it doesn't mean we should eat it all day long. That's the perspective I hope to keep about me when it comes to social media going forward, and maybe a week off of it every month or a weekly "day of rest" isn't a bad idea to help me out with that either.
What do you do to control your social media instead of letting it control you?
