Living life with Multiple Sclerosis
Hubby and I celebrated 17 years of wedded bliss last week 💞. First thing he did that morning? Cleaned the windows so I had a better view of the birds. Love and happiness – just look at that smile – are found in the doing of little things.
May you find your greatest joy in Christ this year and always. God be with you! ❤️, Amy
Hello friends! It’s been a while. Today is a good MS day so I thought I’d write a wee bit.
As you can see…
… I’ve been enjoying the butterfly bushes we planted just last spring. It’s easy to say they love the corner of the yard we chose for them.
I’ve only ventured to the neighborhood lake once since the last time I posted pictures. Sadly, our neighborhood lost their groundskeeper and they’ve not had much luck finding a consistent replacement. As a result, the lake is looking pretty weedy and rough. I know they will get it sorted sooner or later, so I probably won’t hang out much over there until it’s cleaned up. However, I was able to get a shot of a beautiful blue dragonfly.
I’ve spent quite a bit of time watching the birds at our feeders and on the trees at home. Shocking, I know 🤭.
So, on to the main thing. I’ve really been thinking about my blog these past few months. As you can tell if you’ve been following Amy’s Axons for very long, I haven’t been posting much.
Soon after taking full-time retirement in February of 2019 I started my blog as a way to stay busy and feel a bit of a connection to the world. I wrote quite a bit the first year or so before changing the format to more of a photo album of my life.
Since getting my Canon Rebel t8 it has felt like a whole new world of opportunities has opened up. Photography has become a very fulfilling pursuit and outlet for the artistic side of my personality. It has meshed beautifully with my love of birding.
Something has been missing, though. I feel like I should be and want to be writing more and not just relying on photos to fill the space. I suppose I feel a bit intellectually lazy, but mostly I feel reluctant. It isn’t for a lack of topics – I’ve thought about writing on a host of different subjects and have even fleshed some of them out in rough drafts. But, the climate of the world and its intolerance of free ideas has left me cold and I realize I will never publish any of them.
There is one exception: I’m not reluctant or afraid to defend my faith and belief in God, not here online or anywhere else. I know Jesus Christ is the only true Son of God, that all scripture and prophecy pointed to Him, that He fulfilled all prophecy and came and died as an atonement for our sins, that He rose from the grave on the third day and later ascended into heaven, that He will come back, we all will be judged before God the Father by whether or not we have named Him as Lord of our lives and lived according to His Word, and those who are His will spend eternity with Him and God our Father, while all who have not named Him as Lord will be eternally condemned. (Please let me know if you want to know more about Christ, I’d love to talk to you about Him!) It’s everything else that can’t be said without censure. I don’t want to be trolled and fight the nastiness of the world online.
I have never had a bad experience here on my blog, probably because I haven’t shared my thoughts on serious subjects. Looking back, I think I thought I would when I started Amy’s Axons. I realize now that I never will share them in this type of forum because it’s too impersonal for me to feel comfortable. If I’m ever going to discuss sensitive topics, I want it to be within a personal relationship with my conversational partner(s) so we can still feel the tie of humanity between us. The respect of equality of mind, though different conclusions, is essential to talking through viewpoints that are at odds between people.
Anyway, I don’t know where I’m going with this blog anymore. I haven’t decided if I will continue it or if I’ve outgrown the need I had for it when I started it. I suppose time will tell and you will know as soon as I do 😉.
Whether I continue my blog or not, I want to thank you for being here. Thank you to those who have stayed from the very beginning, I truly appreciate your interest and care about my life, particularly those who have prayed for me over the years. And thank you to those who have joined somewhere along the way, knowing you felt like this was worth joining in on has given me great joy.
May God be with you! ❤️, Amy
As you can see, my life has revolved mostly around our cats Laudy and Pip. That’s as it should be for a crazy cat lady. I did squeeze in making some delicious English muffins; they didn’t last long. They were especially good with some Tiptree Raspberry Jam made in England 😋.
Southwest Missouri has been in the grips of a severe drought this summer made worse by excessive heat over 100°F these last couple of weeks. As a result, I’ve not been out of the house much because MS and heat don’t mix well. Summer has traded her usually lush green frock for a drab yellowish-brown garb that isn’t nearly as attractive. We may get some rain later this week, it’s gotta come sometime!
The MS Update Part: You may remember that a few years ago I started taking a drug for my MS named Ocrevus. It was an IV infusion given every six months and I was able to get the last couple of doses at home through home infusion nursing. Well, after a lot of prayer and discussion with my neurologist, I have decided to stop taking the drug. This will be the first time in 26 years that I will not be on a disease modifying therapy. My disease has continued to progress, in the normal course of things, to a place where there are no current drugs to treat it. I’ve known I’ve had Secondary Progressive MS for the last few years but opted to treat it with the drugs available for Relapsing Remitting MS because nothing else was available. Ocrevus has some significant side effects when used long-term and I’ve reached the point where the risks outweigh the benefits. Not everyone with MS may agree with my decision but, for better or for worse, no one else has to live with the results but me. As always with MS, no two people have the same disease progression or outcomes. Though I appreciate the concern and good will of others, please don’t send me articles and cures to try. I am probably already aware of whatever you’ve found on the internet or what your aunt’s cousin’s friend’s dad tried and how it “cured” him. I chose to educate myself about MS as soon as I was diagnosed and have stayed on top of research as well as drugs, diets, and homeopathic interventions ever since.
I am quite at peace with my decision, I’ve known this was coming for a long time. I’ve had 32 years to get used to my MS, we’ve sort of grown up together and understand each other 😉. As always, I appreciate your prayers. Considering how long I’ve had MS I know I am doing very well related to many others. I can still walk some for short periods of time and I can independently take care of most of my daily living needs. My wonderful hubby is my right hand and I know God gave me a tremendous gift when He gave Todd to me. My sister and Dad are always ready to help at the drop of a hat and my Mom-in-law is only a phone call away and has come to the rescue on more than one occasion. I also have a loving and supportive church family, as well as good friends who care and always offer to help me whenever needed.
Thanks for coming by to catch up today, I know it’s been a while since I last wrote. When things cool off a bit I’ll probably be more likely to post more often. May God be with you! ❤️, Amy
I hope you are doing well. God be with you! ❤️, 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.” 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
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 😀) 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. ❤️, Amy
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
I hope you are doing well. God be with you. ❤️, Amy
For there is one God and one mediator between God and mankind, the man Christ Jesus. ~ 1 Timothy 2:5
One more post has come to an end. ❤️, Amy
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
Amy's Axons 