Sunny with a high of 78* F and a gentle breeze. I rode my scooter to the neighborhood lake and spent a couple hours besotted by God’s creation.
Thanks for stopping by. May God be with you. ❤, Amy
A Beautiful Day In the Ozarks
Tag: #ThisIsMS
Feathers, Flurries, Felines, and MS
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
Autumn Leaves and A Recipe From 1909
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
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
A Bumpy Ride on the MS Bus
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
Through My Lens
Today is March 20th, the first day of spring, and that means my Grandpa Frank would have been 129 years old today. Happy birthday, Grandpa ❤️!!
I hope you have a wonderful day and get out to enjoy a bit of nature wherever you are. God be with you! ❤️, Amy
The Day After I Toothed My Brush
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.
I’ve pasted a link to my personal Walk MS page. Please consider making a donation, it would mean so much to me ☺️. I’m already a little more than halfway to meeting my $1000 goal. It’s way past time to find a cure! https://secure.nationalmssociety.org/site/TR/Walk/KSGWalkEvents?px=18236733&pg=personal&fr_id=31565
Thanks for stopping by. May God be with you! ❤️, Amy
A Hairy Situation
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
Doctor Day Dread
I don’t like “doctor day”. I have one with my neurologist every six months, at least. I had one today. Although she is the best doctor I have ever had, has seen me through some really rough MS transition periods, and I like her as a person, I dread going to see her. Though I live with MS and all the limitations it enforces daily, seeing a doctor specifically for the disease always brings the horribleness of it to the fore.
Firstly, I drove myself to the appointment, which required two days of vigilant rest in order to scrape enough energy together to do so safely. I got home completely drained and, six hours later, I’m still sitting in the recliner exhausted.
My walking is worse so I get to go to physical therapy…again. I’ve had P.T. several times over the last 30 years – something else to drive to. It’s worth a shot though if they can help fix the hitch in my “get along”, causing pain in my hips and spasms in my legs. I know I need to work on my balance and coordination, as well.
We discussed my bladder and the medicine change the urologist suggested – it’s always fun to talk about your bladder. She said she wished there was something to do for the interminable, insufferable MS fatigue but it’s just part of it. And, despite my trouble walking and the need for a cane, she said I’m lucky to still be able to walk after 30 years. She said it’s likely due to the fact that I have dauntlessly exercised in some form or fashion nearly every day for the duration of my diagnosis. Nearly all her other patients have moved to motorized wheelchairs this late in the game.
I’m going to get my next Ocrevus infusion the first of March, Lord willing. My doctor told me to continue to stay away from people from now until four weeks after I get the medicine, after which it should be safe to get the Covid vaccine (if I can find one available). As an aside, there was a lot of initial concern over whether Covid vaccines would be safe for people taking immunosuppressant MS drugs. Thankfully, it has been deemed safe and, though they may blunt the full effect, they still seem to work their magic.
Seeing my neurologist is a reminder of all the fear and uncertainty that surrounds the future living with multiple sclerosis. I wake up every day wondering what kind of day it will be. Will I be able to walk? Am I going to have enough energy to make lunch and dinner? I try to take it one day at a time, and I usually succeed. However, when I see the doctor I have to look back over the last six months or year and compare how I am now to how I was then. The last several years, as the disease has slowly progressed, I see changes that are not pleasant to look at but over which I have no control.
No one knows what the future holds, I know that. It may or may not be as bad as I fear it could be. I pray for a cure. Realistically, I think they will have to figure out what causes it in the first place before there’s a cure. It’s hard to win against an unknown, moving target. So much more is known now than ever before and there are some solid theories about what triggers the onset and drives the progression of MS. I hope I live to see the day when no one else dreads “doctor day” because of multiple sclerosis.
Winter Solstice Is Behind Us
The shortest day and the longest night are behind us and that is very encouraging, particularly in 2020. Although I love winter, there is joy in knowing each day will bring a bit more sunshine than the last.
I’ve been busy with this, that, and a little bit of something else these past couple of weeks. I’ll let the pictures do the talking 😉.
My stepmom who recently passed away was an avid quilter. She had nearly finished hand sewing this English Paper Piecing quilt but it still lacked it’s blue border. My stepsister asked me if I would add the border so it could be quilted. I’ve handsewn a couple of quilts in the past but nothing prepared me for the sore fingers, slow going, and incredible amount of time it has taken to sew the teeny-tiny speck of hems together that border the thick paper stuffed inside each hexagon. As you can see in the second picture, you take the paper out after a couple of rows have been sewn together, the paper is basted into each hexagon to stabilize the fabric as it’s put together. This wasn’t the first paper piecing quilt my stepmom did. For her, the harder the project the better the challenge and she had the chops for it! She must have poured hours into this project. It’s good to be contributing to something I know she would be happy to see finished.
We have been enjoying the gas fireplace in our new house this winter. Our cats camp out in front of it any time we have it on and melt into the cutest kitty puddles you ever did see! Last week I made them a cute cat bed to lie on instead of the cold floor. Laudanum (“Laudy”) is our 10 year old blue Cornish Rex and Pip is our 3 year old chocolate Cornish Rex.
As I was sitting outside a week or two ago, I happened to look up and saw this plane and contrails passing. I took a picture just for fun but didn’t look at it for a few days. When I did, I could make out that it was Qantas, the Australian airline. I looked up their flight paths and saw that they only fly in and out of LAX, DFW, and JFK in the States. Therefore, I don’t think it is a common thing to see many Qantas planes flying overhead. I thought it was cool. I remember being on a flight once and the pilot coming over the intercom to announce that the airspace over Springfield, MO is one of the busiest in the States. I’ve often thought of that little tidbit of knowledge since then and believe it must be true. Nearly every time I look up there are several planes and/or contrails streaking the sky.
This was also taken on the Winter Solstice. It’s the best shot I could manage of the “Christmas Star” or conjunction of Saturn and Jupiter. It was pretty nifty to see since it only happens every 20ish years.
We are looking forward to a small gathering for Christmas with both sides of our family over the long holiday weekend.
I wish each one of you the very best, safest, healthiest, merriest, and love-filled Christmas blessings. God be with you. ❤️ Amy
Amy's Axons 