At the end of January I had a blood test to see if my immune system was rebuilding itself after stopping my MS treatments about a year ago (March 1st to be exact). The good news is yes, I have some nascent cells emerging. The bad news is I don’t have very many. I’m still immunocompromised, but the tide is slowly turning 🥳.
My MS has been all over the shop. Two weeks ago I had a string of good days and was able to cook and sew and putter around the house. Yesterday afternoon I couldn’t sit up or hold my head up and spent hour after hour in bed. Today, I’ve been able to sit up and ride around the house on my scooter, but my legs are like concrete and won’t work. Tomorrow? Your guess is as good as mine. The only predictable thing about MS is its unpredictability.
Thanks for staying tuned and stopping by. May God be with you! ❤️, Amy
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 🇦🇹 😋!
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.
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.
A couple of obligatory bird photos because, well… I love birds ❤️.
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. ❤️, 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.
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
I was wiped out after 8 1/2 hours at the hospital getting my 4th Ocrevus infusion yesterday. The first three hours were spent waiting for the pharmacy to compound the drug and get it up to the unit for me to take. At a whopping $100,000 a pop they won’t start getting it ready until the nurses call and say they see the whites of my eyes.
My head ached all afternoon and evening and I struggled to make sense. My favorite was when I told hubby I had “toothed my brush”and was ready for bed…at 8:30. I slept pretty good until about 4:40 this morning. – thanks, steroids I laid in bed daydreaming while snuggling Laudy and finally gave up and got out of bed around 5:40. I’d had three cups of coffee, eaten breakfast, read the news, showered, and was dressed all before I normally get up.
It’s been a long, slow day of flushing from the steroids and a still relentless headache as a side effect of the Ocrevus. It usually takes about 3-4 days to feel normal again. In the meantime, my arms are full of cats and there are plenty of birds at the feeders to entertain us.
WARNING: The following is an extremely exaggerated, fanciful description of a much less exciting story. No one was injured in the actual exploit. Names are not used to protect the identity of those involved.
She opened the top drawer of her cabinet and paused thoughtfully. She ran her fingers over the neatly aligned collection of scissors of various sizes, thicknesses, brands, and purposes. Nothing there seemed quite right. Suddenly, I saw the flash of inspiration turn her usually dull, milky-garnet eyes into lustrous gems. She quickly closed the drawer, bent down, reached under the cabinet, and pulled out a large plastic case. I heard the release of two clasps as she opened it on the ground directly behind me. Strangely, I noticed a faint whiff of gasoline mix with the scent of hairspray, botanical shampoos, and foamy mousses.
With absolutely no warning and the simultaneous feeling of fight or flight that only true terror can create, the whine of a two-stroke, single engine weed eater filled the retail space. The din reverberated off the mirrors, tiled floor, and rows of adjustable metal chairs. A deafening “thunk-tunk, thunk-tunk, thunk-tunk” whirred into life and ramped up into a high pitched scream just over my right shoulder. It swiftly came closer until I felt the very hair on my neck begin to move. I could tell the length of trimmer string was too long and was flicking past the protective case, like the tongue of a cobra tasting the air. Instinctively, I pulled away from the droning sound and was nearly out of the chair when I heard the stylist’s voice filtering somewhere through the bedlam. “Don’t worry, I know what I’m doing. I’ve done this hundreds of times and you’re going to love it!”.
Was she like a chainsaw artist and could sculpt ordinary hair into a beautiful pixie cut with this outrageously deadly tool? After all, I’d shown her a picture of what I wanted. Wasn’t that her license hanging right in front of me on the mirror saying she knew what she was doing?
It’s strange how much faith we put in a little slip of paper with an embossed seal. It gave me the courage to sit back down. As I felt the first chunk of hair whacked off, I squeezed my eyes as tightly as I could and hoped for the best. Thirty minutes passed and I was still alive when she told me she was done.
Because it was a really tired MS day and I didn’t want to be out any longer than absolutely necessary, I got a wet cut without having her blow out my hair and style it. I don’t know if she was trying to cover up the mess, but she showed the back of my hair to me through a small hand mirror. The little bit I saw looked pretty short but okay.
When I was about 10 years old I remember my Mom telling the stylist to cut my uber thick, long, blonde hair into something more manageable. Somehow the lady translated that into a female mullet. I cried uncontrollably until Mom took me back an hour later and had the stylist rid all traces of Liza Minnelli from my head. I haven’t felt like crying about my hair for 40 years. I tell that story because this is what I saw when I got a closer, fuller view in the mirror at home…
Obviously, I couldn’t leave it like that and I certainly wasn’t going to go back and let her take another whack at it (😜😂). Though I’ve trimmed up my own hair before, this was way beyond my skills. Besides, it’s hard to see what you’re doing through misty eyes. So, I ended up going to my Hubby’s barber. Though I had to wait my turn for two hours, he was able to get me in on the same day as the disast-hair and, well, see for yourself…
Ahh, much better! Hey, local friends, do you have any recommendations for a good stylist who can handle short hair?
Photos from the last few weeks.
We have had some beautiful birds at the feeders this week. These are a few of my favorites.
I had a moderate amount of energy on Monday so I decided to squander it by going to the lake near our house. (And I do mean squander. I’m still recovering 😒.) Though it was still a bit cold, the sun was shining and it felt good to sit in it by the edge of the water. The lake was still frozen over but the ducks and geese didn’t seem to care.
I’ve been practicing using portrait mode with my camera this week. It’s impossible to take a bad picture of these two beauties 😻!
I get the next dose of Ocrevus for my MS on Monday of this coming week. I have to wait three months after I get the infusion, but then I will FINALLY be able to get a Covid vaccine, Lord willing. I wish you health and happiness! ❤️, Amy