Living life with Multiple Sclerosis
Although the pictures were an epic fail, I enjoyed riding around with my hubby that afternoon. Oh, and about an hour after we got home both of my eyelids and the bottom of my eyes turned red and swelled up to be about 1/2 an inch thick. They stayed that way for the next 24 hours! Ragweed, was that you??
Yes, I know, I lead a very exciting life 😉. I hope you have had a good week. See you next time! God be with you. ❤️, Amy
Hello, Friend! I hope you are well.
It’s been too hot around here to get out of the house much these last few weeks. However, I did ride my scooter early one morning down to the lake in our neighborhood to enjoy the dragonflies and flowers for a spell.
I braved the heat for a few minutes one day to get a pic of this lovely female cardinal hanging out in one of the birch trees behind our house.
Since I can’t get outside much I’ve been filling my time sewing. I got a new serger and have been absolutely floored by the steep learning curve. For the first couple of weeks I was convinced that not even NASA’s best could get the crazy thing to work consistently! I have read everything I could get my hands on and watched hours of YouTube vids in a determined effort to conquer and master the beast of a machine. Perseverance, about 15-20 hours of practicing on scraps, rethreading the booger, and adjusting knobs a million times AND…
I FINALLY figured out how to consistently get good seams on my serger! I made a cute nightgown that I love. I ordered this knit jersey on super clearance from Joann’s. The snails are very appropriate 😉.
I had my Ocrevus infusion yesterday so I’m fuzzy-headed with a bit of a headache. Around 4:00 this morning I started flushing from the steroids they served up to go along with it. I should start feeling better by tomorrow. For the first time ever I got to have the drug infused at home – so much easier for me! My newest bestie Bill, the infusion nurse, and I spent five quality hours chatting and sharing the ways God has worked in our lives. God is so good!
Thanks for stopping by. God be with you! ❤️, Amy
Sometimes I’m really proud of myself for being able to keep the rhythm of breathing going, such is the joy of MS fatigue.
In my last post I said I would try to write something about my MS, so here it is. Whew, this summer has been a challenge! I have had a smattering of a few good days here and there and even a few strung together in sequence, but more often than not I’ve been under the thumb of pervasive, domineering MS lethargy. Nope, it’s not the kind of tired that needs a nap and sitting to rest for a spell doesn’t shift it at all. Like having a bone dry fuel tank, no matter how hard you try to go, you end up getting absolutely nowhere. The engine won’t start, the wheels won’t go anywhere, the brakes won’t compress, the electric windows won’t budge… technically it’s a car, but it’s good for nothing. I still look like Amy on the outside but there’s no juice to animate me. The electrical wires of my nerves are stripped and the signals my brain tries to send to make my body move either can’t or only partially get through. As a result, I don’t walk right, my hands don’t work the way they’re supposed to, my bladder doesn’t know if it’s holding or letting go, my thoughts struggle to be strung into words, and my balance is all over the place making me stagger around like I’m drunk. Normal things like showering, getting dressed, eating, and even sitting up use inordinate amounts of energy because my nervous system is having to work 1,000 times harder than yours just to get the signals through. Some days, for some inexplicable reason, I spontaneously recharge fairly quickly and I get to do things other than basic human functions – these are my good days. Other days, most days if I’m honest, time passes from my favorite chair or lying in bed. I read, listen to audiobooks, put puzzles together on an app, watch TV, and snuggle with our cats.
MS and heat don’t mix, it makes all symptoms worsen, so I haven’t been on the patio taking pictures much the past few weeks. However, the past couple of days have been milder allowing me to snap a few pics of my feathered friends.
May God be with you! ❤️, Amy
It’s been a month of MS fatigue and quiet living. I’ve ridden my scooter a few times to the lake in our neighborhood and enjoyed the dragonflies and flowers always present. Here are a few of my favorites.
One of these days I’ll write more. God be with you! ❤️, Amy
Hello! The weather has been beautiful the last couple of days so I’ve been soaking up the unseasonal coolness by bird watching on the patio.
I hope you have a wonderful week. God be with you! ❤️, Amy
Have you ever done something that you look back on a bit further down the road and wonder just how you could have been so oblivious? Well, I’m there. I shot straight up at 4:38 this morning and thought, “Copyright! I’ve broken copyright to Merrill C. Tenney’s The Genius of the Gospels“! I was going to post the notes I took on John today, but instead I took down my previous posts on the first three Gospels. Perhaps you were quicker on the uptake than I was. All I can say is I’m really sorry. It was such a good study, I got carried away and shared before thinking things through all the way.
So, back to the regularly scheduled programming…
My nephew came and stayed with us for a while last month. He made his Aunt very happy when he took my camera and, with his artistic eye, took pictures like a pro. Just look at his gallery!
Pretty impressive, eh?!
Here’s the young man himself.
The weather has been somewhat mild for our area this time of year so I’ve been able to get outside and take a few snaps. Heat and MS don’t mix so summer photo sessions are usually few and far between.
All my best to you and may God be with you! ❤️, Amy
Behold, May is about to close her shades while June prepares for her debut.
A little house wren decided to make a nest in one of our birdhouses to attract a mate. This tiny fellow wrote the book on hard work and perseverance.
This is the tail end of the post. May God be with you! ❤️, Amy
Hello, friends, it’s been a while. I’ve tried to write a few times but my thoughts have been all over the place. It’s hard to write intelligibly when you’re being jostled every which way riding at the back of the MS Bus over rough terrain. I’ve had some smooth spots here and there but there have been plenty of pothole infested gravel roads that have caused the wheels to come completely off.
I think the worst day was when I had wandered out onto the patio to watch the birds and got stranded for close to three hours. I was home alone and knew I was tired but misjudged the severity of it and entered a sort of locked-in state unable to move and get back into the house. There were birds a plenty at the feeders that day to keep me company, as well as butterflies and bees visiting the then blooming lilac bushes. However, as I rounded into the second hour, my bladder started to send a signal that became a blur of non-stop, unbearable …—… It was a true cliffhanger! Would my legs recover enough to get me inside before I lost control of my bladder?!? I’m happy to report that thirty minutes later, at the end of my bladder’s tether, my legs kicked in and saved the day!
Per usual, I’ve been snapping a few pics of the birds around the house. I was finally able to put the feeders up again about two weeks ago with no signs of sick birdies. I sure missed my little feathered friends! A pair of house finches made their nest on the wreath on the front door. Their brood of six have all made it so far, as you can see below. Mom and Dad have been keeping the nest floor clean by putting the little nippers’ poo on the edges of the nest. That will be fun to clean up 😝.
Here are a few of my favorites from the backyard.
Thanks to many of you, I am thrilled to report that I came in first among the local MS Walk fundraisers! From the bottom of my heart, I am truly grateful.
The ride is getting bumbier all of a sudden and I am going fuzzy again. I hope you are doing well and enjoying the beauties God has made all around you. ❤️, Amy
Thanks for following along to the end of this post. May you go with God!
Today is March 20th, the first day of spring, and that means my Grandpa Frank would have been 129 years old today. Happy birthday, Grandpa ❤️!!
I hope you have a wonderful day and get out to enjoy a bit of nature wherever you are. God be with you! ❤️, Amy
