The new year has been here a while now; it’s hard to believe that we’re already well on the way to February. The holiday decorations in our home are still up, including two Christmas trees. We’re obviously easing our way into 2023 rather slowly! The snow has finally returned to West Michigan, and we’re enjoying it!
This is Carla here, by the way, in case you hadn’t realised that. Larry takes care of our Choraegus music site, and I look after “the purple website” and our Facebook page. I’m pretty certain there would be a lot less purple in this website if Larry were running that too. Anyway, something Larry and I haven’t yet talked openly about… is that I’ve recently been diagnosed with Multiple Sclerosis. Yes, it was a bit of a shock to me too!
A hint of troubles yet to come
So, how did it start? Originally, it seems, with random symptoms in 2018, including a sudden (and scary) worsening of my eyesight. At that time I had brain and spine MRIs, and saw various doctors. I emerged from all those medical adventures with a lot of bills to pay, but no diagnosis of anything but optic neuritis. Over the course of a few months, my vision issues became less of a distraction, and life continued pretty much as normal. After a while, Larry’s medical stuff took over, with his diagnosis of prostate cancer, and his subsequent treatment, and then shoulder surgery, then a return of his cancer, and more treatment.
Finally, in 2022, with Larry doing well, we dared to hope that we might get a break from medical issues for a while. We even managed to go to England in July, to see my family for the first time in six years. We caught Covid while we were there, but still managed to salvage a few days of real “vacation time” to spend with family and friends. We’ve since been telling ourselves that we need a do-over of that trip, without Covid getting in the way. We really don’t want to have to wait another six years to see our UK family and friends again!
Unexpected health problems in 2022
I started to experience some weird symptoms in September. Larry and I were at our summer cottage at Bay View, and I noticed that my left leg felt numb. I thought perhaps I’d done too much walking, or had some kind of injury that I hadn’t noticed before. When the situation didn’t improve, I reluctantly dragged myself along to see a doctor in mid-September, and was referred to a neurologist, just in case.
With a neurology appointment safely scheduled for November, Larry and I continued to enjoy our time “up north”. I walked around on legs that felt like Bambi’s (but definitely didn’t look like Bambi’s), and tried not to worry too much. We drove back and forth between Bay View and our home in Holland, and continued with all our usual activities. I had some strange and random symptoms during that time, but I didn’t panic, because I had a neurology appointment booked anyway. No problem, right? A lot of British people are like that, by the way. I tell people that we don’t generally see a doctor unless it feels possible that we actually might not last the day. That’s a joke, but there’s a fair amount of truth in it.
A very scary Halloween
My plan to continue life as normal went badly wrong on October 31st. I woke up that morning feeling as if I’d been drinking – a lot! That’s not something I do, so the feeling of lightheaded wooziness was very unfamiliar to me. My right arm felt as if it wanted to detach itself from my shoulder and float away, and my eyesight had once again taken a turn for the worse. When the situation hadn’t improved by lunchtime, I was concerned enough to go to Urgent Care. I spent several hours having various tests, but getting no obvious explanation for the mystery symptoms. Eventually, I was referred to the ER, in an attempt to “rule out some of the big, ugly things”.
The big, ugly things (and why we missed the trick-or-treating)
Halloween is always such a fun evening where we live. We’d been looking forward to handing out huge amounts of candy and treats to groups of children. Instead, we spent the evening in the hospital, where Larry did some reading, finished a crossword or two, and took a nap… and I had a brain MRI. A few days later, I had a follow-up appointment with a neurologist here in Holland, who confirmed my diagnosis of Multiple Sclerosis. Next, I had a spine MRI, three steroid infusions (that sadly didn’t ease my symptoms) and another neurology appointment to talk about the MRI results. It was interesting (in a slightly odd way) to look at the scan images. It turns out that a lot has been happening in my brain and spine since my last scans in 2018!
Starting treatment
Multiple Sclerosis is a disease that affects the central nervous system (the brain and spinal cord), and causes a wide range of symptoms. It’s different for everyone. In December, I started taking medication that’s designed to slow down (or stop) the progression of the disease. This medication is not for the faint-hearted, and comes with a variety of possible side-effects. Potential side effects… or worsening MS symptoms? The choice was clear to me, so taking the medication seemed to be the wise course of action. Once again, we had a stressful time with our health insurance company (nothing new there), and they refused to authorize the medication for me (insert a heavy sigh of frustration here). I’m thankful for the drug company’s Patient Assistance Program for making it possible for me to take this medication, at least for the next year.
Continuing with our busy Christmas!
One thing Larry and I were determined about… was that we didn’t want my new MS diagnosis to get in the way of our holiday performances! We’ve never cancelled a performance yet, and didn’t want to start! Having established that I’m still able to play handbells (thank goodness!), we went ahead with our busy month of duet performances, and had a great time sharing our music with local audiences. December was insanely busy for us. November had been chaotic and stressful, with doctors’ appointments and tests, and we’d never really managed to get ready for Christmas. We decided to make the handbell performances our priority, and let everything else go, apart from making an exciting trip through the snow to cut down our Christmas tree. Apologies to all the people who didn’t get a Christmas card from us in 2022!
When Christmas Day arrived, we spent a quiet day at home together, and that was all we needed.
What happens next?
There are lots of things I can’t do, now that I have MS. I’ll probably never be able to play the flute. I can’t drive a car, or even ride a bike. It’s unlikely that I’ll ever run a marathon. I can’t play the flute or the cello, and my dream of being a superstar harpist will never come true.
Of course, I couldn’t do any of those things before I had MS either. The truth is that I plan to continue doing everything I normally do. I’ll have more neurology appointments in my future, and regular blood tests, and brain and spine MRIs. It’s reassuring to know that I’ll be closely monitored for any changes, but there’s no reason to think I’m going to go downhill any time soon.
Larry and I have dealt with difficult stuff before. We know for certain that we can’t live in “what if…” mode. We have to focus on all the things we can do, and not stress about things that might never happen. We’re both looking forward to more handbell duet performances in the coming months, as well as rehearsing and performing with the Kalamazoo Ringers. In just a few months’ time, we’ll be able to open our summer cottage at Bay View again. If enough snow falls in northern Michigan in the next few weeks, we might even take a bonus drive north. The Victorian cottages at Bay View look so pretty with a covering of freshly-fallen snow!
There’s also the Bay View Week of Handbells in August to look forward to, so I’ll have lots of music to work on in the months ahead. This year’s concert will include two of Larry’s handbell arrangements, which makes the whole event extra exciting for us!
A few words of thanks
Thank you to the handful of close family and friends who’ve kept my secret, and helped to keep my spirits up since my diagnosis. I’ve appreciated your messages of support, thoughtful advice, prayers and smiles. I’ll admit that I was somewhat shaken to receive this unexpected diagnosis, and there have definitely been some frustrations in recent weeks. My way of dealing with frustration is to vent constantly; if I have something to complain about, I’ll have a self-pitying rant, then I’ll feel better. I appreciate the friends and family who’ve listened to my whining/complaining and managed not to bash me with kitchen utensils.
I had originally planned not to share the news about my diagnosis more widely – and I’ve been reliably informed that I “still look fine from the outside” – but I think I cope better with things out in the open. So, now you know what’s been happening, and thank you for reading this far. I’m doing well, and I’m optimistic about the future. MS is definitely not fun, but life is still good. If you have any questions, you’ll find me on our Facebook page!
