One day back in mid-January I took a nearly mile-long walk by the lake near our house. There was a blisteringly cold wind that froze my fingers and stabbed my lungs with each breath, but made me feel very alive. It didn’t matter because my legs were working that day and the call of nature was beckoning. Her voice is always so sweet and calming, it’s a delight to wander at her bidding.
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.
I haven’t felt like writing for several weeks now. Although I’ve had numerous ideas and thoughts, none of them have inspired me to pour time into putting them together.
I know I will return to Amy’s Axons with some combination of words and pictures in the near future. Thank you for following my blog and always encouraging me to share a bit of myself in this little corner of cyberspace.
God be with you in this new year.
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
The first week of December is in the books, and I can hardly wait for each new day to hurry up and get here. I got myself an “Oh, Nuts!” chocolate advent calendar to enjoy. Mmm, Mmm! Here are a few of my favorites so far!
I know many people put their trees up early this year, but I couldn’t bring myself to do it. My Mom always had us girls decorate the tree the day after Thanksgiving. Somehow, now that she is gone, it makes her feel closer to follow familiar traditions. She gave me many of the ornaments, and I love the memories each of them brings back.
Hubby and I drove by the river near our house as we came home from grocery shopping this past Saturday and saw several American Pelicans floating around. I got home, grabbed my camera, and drove back as fast as I could hoping not to miss them. I needn’t have worried, they weren’t in any hurry. The fishing was apparently good because they snacked all afternoon. Wow, it was fun to watch them throw their heads down, bring up a fish, and watch it wiggle down their necks!
I sat and watched the pelicans for about an hour and started back along the walkway to my car when I heard a rustle in the bushes and trees. There were several bluebirds eating berries not five feet from me! I got as many shots as I could of them before the sound of my camera scared the group off, these were the best two images. It was just as exciting for me to see them as the pelicans.
I got in the car and drove just a bit further down the road to another access spot by the river and took a few more snaps before heading home. I was running out of energy and only stayed 10 minutes or so, but every second by a river is bliss to me and I’m not going to waste it.
I think these shots are proof positive that there is beauty in every season. As a matter of fact, there’s beauty in everything and in everyone, if you look for it. I am going to try to remember to look for the beautiful in the world around me. I’m especially reminded during the holiday season to be grateful God saw beauty and worth in His creation, enough so that He sent Christ to redeem us. God be with you! ❤️Amy
I hope you had a good Thanksgiving and enjoyed a bit of down time. The weather here in The Ozarks has been mostly mild for the time of year and begged for a stroll around the lake near our house. It was a good MS day so I chanced hiking halfway up a short trail for a few photos.
A few members of our family shared a cozy, delicious turkey dinner with all the fixings on Thanksgiving Day.
As the title suggests, the energy expended to hike and walk around the riverbank as well as to cook all the sides for Thanksgiving was worth it. They cost me a few days of serious rest and struggle walking, but I am incredibly grateful to still be able to do these things. So many people who have had MS for 30 years no longer have the choice of doing these seemingly mundane, everyday things. The blessing that I still can do them, no matter how many days I pay for it, is not lost on me.
I took the final three photos below over the last few days as I’ve been recovering. I am so happy the juncos are back for the winter, they are one of my favorites.
Though I hope to write again soon, I don’t want to miss the chance to wish you a very merry, festive Christmas season! ❤️Amy
I’ve got a case of The Blahs, not to be confused with The Blues – which I don’t have.
MS has been busy fatiguing me of late without allowing me to pursue much sewing or exploring around to enjoy photo taking. The weather has turned cooler so most of my bird watching has been through the windows instead of on the back patio. I did get a few snaps with my phone of the cats doing cute things. Well, they’re cute to me, anyway.
After a long 35 year battle with breast cancer, my stepmother passed away a couple of weeks ago. She had suffered so much that it was a blessing to know her pain was over and she had gone to her heavenly reward. Of course, my sister and her family came up from Texas for a few days in two consecutive weeks. They got to say “goodbye” the first week and were here for the funeral later the following week.
I’ve been putting a lot of puzzles together while listening to Charles Dickens novels. So far, Bleak House and A Tale of Two Cities (both of which made me cry) have been my favorites. I just finished Great Expectations and am only three hours (out of 23) into The Old Curiosity Shop. I have A Christmas Carol, Nicholas Nickleby, and The Pickwick Papers waiting in the wings. I’ve read some of these before but am enjoying how they sound as audiobooks with wonderful readers speaking life into the characters as they do all the different voices.
(American) Thanksgiving will be a much smaller affair than usual but we’re looking forward to seeing my Dad and my step-sister’s family. In the true spirit of the holiday, they are each bring a couple of dishes while hubby and I do the rest. Despite all the troubles in the world around us, we have so many blessings for which to give thanks. I hope you find many blessings to be thankful for too.
God be with you. ❤️ Amy
This past Friday I got in the car and drove to an opening in the woods just down the road from our house. Although the spot was less than a quarter mile away, and any other person would have walked, I drove in an effort to reserve as much energy as possible so I could do a bit of exploring. With my trusty cane in my right hand and my camera around my neck, I entered the forest along a well-maintained track. I’d never been to this area before, though I had been planning to check it out since noticing it after we moved earlier this year. The first half of the pictures below are some of the things I discovered. I wish I could share the smell and sound of the leaves crunching beneath my feet; the birds calling and flying in the canopy above; the babbling of the small, mossy spring where dragonflies were sunning themselves; and the joyful feeling that I had stepped out of the real world and into a children’s fantasy book.
I hope you have a chance to enjoy the changing seasons wherever you call home.
God be with you! ❤️, Amy
Welcome to another photo collection of life in the Ozarks!
No post is complete without my two favorite cats!
Autumnal blessings to you! ❤️ Amy
A well stocked pantry is essential for spontaneous bakers such as myself. Not only is it important to have the essentials on hand, like flour and butter, but also an ecclectic array of the odd and unusual, such as saffron and vanilla beans. It takes time to grow your stock necessary to whip up something special at a moment’s notice without having to make a grocery run. You also have to learn to keep an ongoing mental list of how much you have on hand of each ingredient. There is nothing more annoying than having to go to the store in the middle of a recipe because you don’t have enough of something to finish the job. Keeping your pantry topped up is important.
Much like baking, faith needs a deep repository of ingredients that are grown over time in order to create a feast that will supply daily Bread, even during times of famine. Basic faith, all that is needed to initially become a follower of Christ, is to believe that Jesus Christ is the Son of God and that by His death, burial, and resurrection He has overcome sin and death and has given us eternal life (1 Corinthians 15:1-4). Scripture was written by about 40 different men, as the Holy Spirit prompted them (2 Timothy 3:16), over 1,500 years and is a wellspring of history, personal experience, wisdom, prophecy, fulfillment of prophecy, law, gospel, poetry, and letters giving first-hand accounts by eyewitnesses who had dealings with our eternal God across time. All of these were written for our learning (Romans 15:4) and can be mined to give us everything we need in order to grow our faith through hope, truth, love, peace, joy, patience, endurance, faithfulness, forgiveness, mercy, grace, obedience, submission, goodness, kindness, gentleness, self-control, understanding, wisdom… and so much more!
The growth of faith is directly related to how much time, effort, thought, and personal devotion we put into topping it up. Recognizing and experiencing God in one’s personal life with the aide of the Holy Spirit, when combined with listening to Him as you study scripture and talking to Him through prayer, combine to help us live our best and fullest life in Christ. It is this fullness of faith, one that is constantly being filled and topped up, that shifts our viewpoint from life here below to that of the promises given about life above.
As we see every day on the news, bad things happen in the world. If you have lived very long at all, you know that unsolicited bad things will happen in the lives of the ones we love and even to ourselves. Christians are not immune from failure, brokenness, loneliness, sorrow, or hardship of all kinds. Accidents, illnesses, viruses, diseases, and death will touch and eventually take us all.
BUT instead of despair and hopelessness when these things happen, we Christians can reach into our diligently topped up storehouse of faith and praise God through the storm instead of blaming Him. We find ourselves resting in His ever present, faithful hands and feel a deep assurance that He has lovingly pressed us against His heart to keep us safe. Not necessarily that He has removed the travails that happen to us in the flesh, though He certainly can do so if it is within His will! But, no, I mean the safety of our faith. The promise of His love and His sovereignty alive and over our lives no matter what situation or diagnosis or trouble we find ourselves in. This kind of faith is possible because Jesus Christ has overcome sin and death by His resurrection and is the source of eternal life for all who call upon His name. He has overcome everything in this world and, as a result, there is now nothing that can harm those who believe in Him – not even death!
Paul says it this way in 1 Corinthians 8:34-39, “Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written: “For your sake we face death all day long; we are considered as sheep to be slaughtered.” No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”.
To me, the promise that nothing can separate me from the love of God through Christ Jesus my Lord tops me up to overflowing! If you are already a Christian, don’t forget to keep topping up your faith each and every day through scripture and prayer. If you are not a Christian, but you want to know more about how to become one so you too can be filled to the “whole measure of the fullness of Christ” (Ephesians 3:19), then send me a message and I would count it a privilege to share the Gospel with you!
To the praise of His glory! ❤️Amy