Energy all gone, Feels like I’m in a coma – A puddle of goo.
I think I’ve melted into and become one with my recliner these last four days.
Thankfully, once again, my feathered friends have come to the rescue and filled the long hours with the joy of their songs and avian antics.
Another source of happiness filling my idle time has been the company of our cats, Laudy and Pip. They have no idea what a blessing and source of company they are to me, but I count them as one of God’s treasures gifted to my keeping. And they are experts at the art of resting 😻.
A person very dear to me gifted Hubby and I a fun surprise, a 6-month subscription to Universal Yums. It’s a monthly box featuring snack food from different countries around the world. This month’s box arrived yesterday with treats from… Austria 🇦🇹 😋!
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
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! ❤️, Amy
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.