Living life with Multiple Sclerosis
It’s been a very good couple of weeks ð. My MS has loosened the reins a bit some days and not ruled my life as such a tyrant every moment. I’ve seen a lot of family, especially this past week, and they have boosted my spirits immensely.
These little friends came to visit too ðĶðŠķ!
My Hubby makes the best thin mint concretes – such a treat!
I hope you are enjoying your little slice of time in whichever corner of the world you call home. God be with you! âĪïļ, Amy
Hello again, Friend. Below you will find some random pictures of things I’ve been doing to fill my winter days.
I really enjoy following several YouTube vloggers in the sewing world and wondered how hard it would be to take pictures of each step of garment construction like they do. I gave it a go and learned they have a lot more patience than me! Most of the pictures I took are in my camera’s trash and there they will stay. I’m sharing a few just to make myself feel like I didn’t waste all the effort it took to complete the experiment.
My favorite Laudy pics of the past few weeks…
We had some really beautiful warmish days since my last post so, of course, I sat out in the backyard and watched the birds.
But, my favorite winter activity? Snuggling with Hubby!
Lord willing, I’ll write again soon. God be with you! âĪïļ, Amy
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.â 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. âĪïļ, Amy
Hello again, it’s been a while. I’ve been remiss in writing, distracted by other things in life. Well, actually, just one thing (drumroll)…my MS. Shocker, I know. The last couple of weeks have been simply outrageous. I’ll spare you the details, but I have IV steroids coming my way to try and get things under some sort of control. Yesterday, the day the home infusion nurse (yes, Bill ð) was ready to come to the house and hook me up, winter storm Landon arrived covering the roads with ice. Today, Landon dumped 7 inches of snow before going on his merry way. Bill texted to say he will come over this weekend to get me going once the roads become traversable.
The snow has been beautiful to watch as it swirls and blows in frigid gusts. We’ve had 30+ birds at a time come to the feeders these past couple of days for an easy meal during the storm.
As ever, the cats are keeping me company.
Gratefully, neither they nor my sweet Hubby see someone with MS when they look my way, they just see me – full stop. I feel so loved, and I know it doesn’t get any better than that.
God be with you. âĪïļ, Amy
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 ð. 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! âĪïļ, Amy
I rode my scooter around our neighborhood this past week. Autumn is my favorite season and, despite a later than usual start, trees in our neck of the woods are glowing with color.Â
A couple of obligatory bird photos because, well… I love birds âĪïļ.
My Dad has slowly been giving me a lot of our family pictures and genealogy material this past year. As I looked through the latest batch I found a small book of “receipts” in the Edmunds Cookbook, compiled in 1909. Edmunds is a town in Indiana where my great grandparents lived in 1909 as members of the local Quaker community. I thought it would be fun to try to make a cake from the scant directions provided.
I hope you have a wonderful day! God be with you. âĪïļ, 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! âĪïļ, 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! âĪïļ, 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! âĪïļ, 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! âĪïļ, Amy
Amy's Axons 