Living life with Mulitple Sclerosis
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
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
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
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.
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
August has provided us several opportunities to enjoy time outdoors, as the pictures below document. We had a few unseasonably cool days for this time of year that allowed me to get out of the house and explore a few outdoor spaces close to our house. I ramped up my own self-isolation the past couple of weeks in anticipation of my next Ocrevus infusion. Matter of fact, I am writing this in the hospital while the O-juice goes in. The drug was supposed to start dripping at 8:00 but it got held up in the pharmacy until a little after 11:00 😖. It takes about five hours to infuse then I have to wait an hour before I can leave, so it’s going to be a long day. Even so, I’m thankful to be getting it at all since so many others with MS don’t have any options this late in the game (#30yearsofMS).
Hubby had a couple of weeks off between semesters so he tackled restoring the fence around our backyard. The days he worked on it were boiling!
The road back home from the river.
I have had a lot of things floating around in my mind to write about, but I haven’t decided if I want to share them or not. Writing is very pleasurable and cathartic for me and I want to guard it so it remains that way.
May God be with you. ❤️, Amy
❤ Amy
