I hope you are doing well. God be with you! ❤️, Amy
A Week In My Life
Tag: #LivingWithMS
Hoppy May
I hope you are enjoying your week. See you next time! ❤️, Amy
Hello, Again
Hello, again.
The last time I posted I told you I had a relapse of my MS and was getting ready for a few days of steroid infusions to try and hasten recovery. Sure enough, it happened and my symptoms have improved. My left eye stopped twitching and feeling numb, I can move my legs again and walk with less of a shuffle-stumble sort of thing. My energy level has improved to allow me to be up for more than 3-5 minutes at a time. Things are still not back to where they were before, but I’m hoping the trajectory continues to move up.
Huge doses of steroids given in a short time creates numerous icky side effects – one of the worst for me is flushing of the skin. That being said, the side effects during the infusion are nothing compared to the slam your body takes when your last dose is done. Agonizing, insipid, catatonic-like fatigue reigns for about three days while your skin hurts to the touch and your muscles ache down to the bone. Slowly, the goo seeps out through every pore of your being and, around day four, you sense you are morphing back into feeling like a human.
I’m so thankful it’s all behind me now. It’s been four years since I had a relapse necessitating steroids. Yesterday marked four years since I completely retired due to MS and April will mark 32 years since my diagnosis. I’ve never felt bitter about this disease nor thrown my fist in the air screaming, “Why me?”. I think a better question is “Why not me?”. Everyone has some struggle to deal with in life. There’s no such thing as luck, good or bad. There is such a thing as attitude, though. As Philippians 1:27 says, “Whatever happens, conduct yourselves in a manner worthy of the gospel of Christ.” Though “whatever happens” here is in reference to whether Paul can come to visit the Philippians or not, he goes on, in the same verse, to tell them, “Then, whether I come and see you or only hear about you in my absence, I will know that you stand firm in the one Spirit, striving together as one for the faith of the gospel.” No matter what diseases, frustrations, difficulties, or unexpected troubles come our way, we are to respond with a Christlike attitude that brings honor and praise to the glory of God.
Nothing makes me think of God more than His creation.
I hope you are doing well. May God be with you. ❤️, Amy
Happily Ever After
Hubby and I celebrated 16 years of marriage yesterday 💕. He’s always been and always will be the best part of my life. God gave each of us to the other and not a day goes by without recognizing and giving thanks for such a love as this.
Thank you to all who follow or occasionally peruse my blog. I wish you a safe, happy, and healthy New Year! ❤️, Amy
December
I think the beginning of November and the start of December swapped their weather garbs here in Southwest Missouri. 70+°F today!?!
My sweet tooth took over my phone last month and before I knew what it was doing it had ordered TWO advent calendars!
My MS has been very “assertive” over my legs and energy levels (among other symptoms) these last couple of months. That means lots of sitting and boredom. I’ve filled the time with some hand sewing and needlework. These little puffs turned out pretty cute.
We kept my Dad’s dog again for a few days. She’s growing on this die-hard Cat Lady.
As you can see, life has been very exciting around here 😂. Of course, no post of mine is complete without a few photos of birds.
Carolina chickadee
I’ve been rereading through the Bible each day, great gulps at a time, two or three books per day. I’m overwhelmed at the scope, harmony, depth, awesomeness, faithfulness, mercy, loving kindness, and holiness of God. Everything He does is Right. Everything He says is True. In this season of Christmas, it is especially important to remember how all history, all time, all hope, all fulfillment of prophecy, all meaning and purpose is found in God’s one and only Son, Jesus Christ. He is more than a season, more than an Eve or a Day. He is Creator, King, Redeemer, God with Us, Promise-fulfilled, Hope, High Priest Forever, and so much more. Come let us bow before Him and worship Him in His majesty! ❤️, Amy
Mallards and Monarchs
I hope you are doing well. God be with you. ❤️, Amy
A Week In My Life
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
Summer’s Lasting Vibrance
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
Breath In, Breath Out
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
Quiet Days
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
Amy's Axons 