A Week Interrupted

There I was having a perfectly good day last Saturday riding around with my hubby as he ran into a couple of stores for our weekly shopping, when all of a sudden I felt a familiar pain in my lower tummy.  Within just a few minutes I felt the next stage of an all too familiar urge hit and I knew before we made it home I had a UTI.

Fun Fact: One of the most common symptoms of MS is bladder control problems.  The bladder has spasms and won’t empty completely causing frequency and urgency.  Because the bladder won’t empty completely, MSers get a UTI very easily.

Anyway, my suspicion was validated at urgent care that same Saturday afternoon and I came home with the usual round of antibiotics and some Azo to ease the pain.  I typically feel better within 24 hours, but when things felt worse by Sunday evening I knew we needed to go back to see what was going on. 

A kidney infection was what was going on.  I got a different script for a stronger antibiotic for the next seven days and then a thigh-full of another one.  They warned me it would hurt as they added Lidocaine to the concoction and said it would take about 30-40 seconds to give because it was “thick”.  I made it through the shot, but then nearly passed out 🥴.  My blood pressure dropped too low very suddenly, I got all sweaty, and felt myself going.  No big deal, I recovered and they let me go within another 30 minutes.  Passing out was nothing compared to the pain throbbing through my thigh! With hubby dragging me by one arm and my cane propping me up to stay vertical with the other, I limped and whimpered my way to the car and thought, “That shot better be worth it!”

I’ve had lots of UTIs, but this was my first kidney infection; I wasn’t quite ready for how hard it kept hitting and how long it took to feel better.  By Wednesday I knew I was going to live and felt back to my normal self on Thursday.

During the time it took to recover, I didn’t do much. I filled the lethargic days by hanging out with and generally loving around on the cats, reading an Inspector Morse mystery, listening to Dickens’ Bleak House, putting some puzzles together on my favorite puzzles app, and sleeping a lot.  Finally, on Thursday and Friday, I ventured back out on the patio for short bits in the mornings and evenings – to avoid the heat, another no-no when you have MS – and even managed to muster the energy to sew a cute little tunic with an adorable cat print for myself! 

There is a river just a mile and a half down the road from our house with a lovely bridge and trail from which to admire nature.  Hubby humoured me and took me for a while around noon on Friday.  Though I can’t walk the trail anymore, we traversed the bridge and took in all the special delights that fill the senses when around running water.  Birds chirping, breezes blowing, water rippling, the faint whiff of fish in the air, the sight and smell of earth and dirt eroding, tree roots erupting on trails down to the river banks, and the beauty of wildflowers clustered along the banks and in the undergrowth, or definitely blooming in solitary confidence and glory. 

It feels so good to feel better!  It was a good reminder to appreciate my general health, despite the MS.  I’d take a lot of crummy MS days over going through that again any time soon.  I hope you enjoy the pictures below and are able to get a sense of their feel and place for the ones not captioned.

A tired Laudy.
Waiting to be scratched…
… the progression of the scratch..
…finally leading to sleep in various positions.
Our handsome, big, chocolate Rex 😻😍❤️!
Those eyes!
Pip noticed this goldfinch at the window one morning. I snapped a quick pic with my phone.
Snickerdoodles 😋
Hubby got new tires, always an exciting day 🚴‍♂️.
It goes this way ➡️
I gave homemade tortillas a go…👍😋.
I took this a couple of weeks ago. What a beautiful universe God has made!

I hope you have a wonderful week ahead. God be with you! ❤️

Bike 150, Jammies, and OJ #2

Hello Friends!

It’s time for my next heapin’ helpin’ of Ocrevus! I’m writing this at the hospital while the Ocrevus Juice (“OJ”) is going in.

Thursday, August 29, 2019 was the big day for my first infusion. I was excited to get the OJ going…
… and today I keep thinking that I am willing allowing this whole business to happen to me at a cost of $17,000 per infusion.

My life has been a pretty low key affair since I posted last. As far as the OJ is concerned, I felt decent and it seemed I even had a bit more energy than usual for the first couple of days, despite a light, chronic headache. Naturally, the penny eventually dropped and on the third day a monstrously oppressive fatigue settled in. It felt like I was trying to balance a bowling ball on my neck instead of my head. My legs were concrete pillars and my feet were made of iron. This tyranny lasted for five days before finally releasing me to a much kinder, though still pretty strict, general tiredness. I wonder how it will play out this time. I’m hoping it demands rocky road ice cream 😉.

Todd and I did have one HUGE outing this past Saturday.  He rode in the MS Bike 150 in my honor 🥰. I was so proud of him. It was brutally hot that day but he pushed on and completed 102 miles! As I’ve mentioned before in previous blogs, I don’t drive much anymore because it makes me tired. So, it was a ginormous effort for me to drive 80 miles to the finish line to pick him up. Both of us gave it all we had in the name of fighting this crazy disease. I ended up paying for the effort for a couple of days. On the upside, I spent two days in my jammies snuggling with our cats whilst alternatively watching TV and reading.

My hero closing in on the finish line.
Sweating it out in order to cheer my Todd the last 100 feet. If you squint you can see the orange finish line behind me.
Time spent with cats is never wasted.
~ Sigmund Freud

I have no idea when I will feel lucid enough to write another post. But I do sincerely thank you for joining me as I meander through the wilderness that is MS.

May God be with you.

I Want To Ride My Bicycle, I Want To Ride My Bike

I have had several “good days” in a row over the past few weeks!  They may not have been anyone else’s definition of a “good” day, but to me they were. I have always tried to exercise in some shape or form each day for the past 26 years. For many years now I have been confined mostly to walking around the house for as long as possible before having to sit and rest.  Once I have recovered, I walk around again, rest, and so on. My hubby is an avid cyclist and I have at various times tried to ride with him. I start out doing okay, but inevitably wear out in spectacular fashion because I refuse to listen to my body when it starts to get tired.  As a result of my own stupidity, I end up having to stop riding for weeks or months.

In fact, the last time I dared to ride a couple of years ago, I became so utterly undone by the endeavor it took three solid months to come back to a baseline similar to the one I had previously.  After that, I promised never to do that to myself again and put my bike away in the deepest, darkest, corner of the garage. Like someone lost in a foreign country and unable to speak the language, I just couldn’t understand that I could do more over time by slowing down or stopping before inevitably self-imploding.
I follow several MS related research websites and have recently noticed an uptick of studies related to exercise and its effect upon disease progression, regardless of which type the participants had. Of course, exercise doesn’t stop MS progression and disability, but it does have a positive impact.  People who exercised to their fullest potential, even if wheelchair bound, retained more physical skills for a significantly longer period of time than cohorts who didn’t exercise on a regular basis. That got me thinking again about riding my bike.

I’ve certainly noticed a decline in my overall stamina, coordination, and balance for several months, despite my regular efforts to walk around the house.  I’ve also heard myself repeatedly telling my husband how jealous I am of him being able to ride. I got to thinking maybe I should push myself to try cycling again. So, with a healthy dose of trepidation, I put my courage to the sticking place, and pulled my cobweb covered bike out of its long confinement, put some air in the tires, and set off on a short ride.  I managed to get around our block five times in ten minutes before feeling the tug of tiredness. Yay for me!

Feeling encouraged, over the course of the last few weeks I’ve managed to slowly build up some stamina and increase the range I ride. I’d forgotten how delicious it is to feel the breeze on my face, to smell hay and wild honeysuckle in the air, and to hear the choir of various birds singing and chirping from electric lines and treetops. I’d also forgotten how it feels to get my heart rate up, feel the burn of long unused muscles, and enjoy the rush of endorphins when finally finished.

There have been days when I’ve only been able to ride for a few minutes. For example, my ride this morning was abbreviated because fatigue set in pretty quickly.  I had a feeling I wouldn’t make it long since my legs were already heavy and slow to respond to the demands of walking. However, two days ago, I was actually able to ride for 37 minutes!  Perhaps you saw or heard about Kayla Montgomery in the news a few years ago. Kayla’s a young track star who runs races despite the fact MS has left her unable to feel her legs. When the race is over, she collapses into her coach’s arms unable to get up or walk for several minutes or hours.  Well, that’s pretty close to how I am after each ride. It requires a lot of resting before moving on with my day and attempting to conquer other tasks like cooking or folding laundry. I’m trying not to be afraid of what will happen in the future with my MS. I’m going to do my best from day to day trying to obey the constantly fluctuating whims and fancies this dumb disease dictates because I want to be able to continue to enjoy the ride for as long as possible.