Month: October 2025

CONUNDRUM: A confusing or difficult problem or question.

Now that I have retired, my entire routine has changed. One of the many cards I received upon retirement was one that said welcome to the seven-day weekend. I got a chuckle out of that one, but it has been prophetic. When I was working, there was a strict routine. Monday through Friday were workdays and most of the errands and honey-do stuff was relegated to the weekends. I knew what day of the week it was because I was looking my Outlook Calendar every day. Now, I constantly ask/remind myself what day of the week it is because I can stay up as late as I’d like, don’t wake up to an alarm or look at a calendar anymore. So, my routine has changed a lot and I’m slowly getting used to it.

The one routine that hasn’t changed but is becoming tedious is my dependence on the monthly treatments I receive for my MS. The routine has evolved over the last eighteen years, but the one constant has been multiple needle sticks, and various degrees of feeling like shit for the better part of three days every month. I believe these treatments have allowed the progression to stay confined to one limb, although that limb today is virtually useless, but other comorbidities have cropped up that these treatments can’t touch – mainly leg tremorsand arthritis in both hips. 

When I was first diagnosed with Primary Progressive MS, I understood and expected that my mobility was going to become compromised.  My goal was to do whatever I could to avoid being stuck in a wheelchair and hoped that whatever pain I’d experience would be manageable. Maybe I’d get lucky, and my progression would end before any of that happened. Beyond that, I didn’t dwell on a future that I presumed was far beyond the horizon. There would be plenty of time to address these things when my MS bill became due.

While living and working with MS had its challenges, it didn’t prevent me from doing what I wanted. Getting dressed became harder, but it was still very manageable. It took longer to complete chores and yard work, but I could still do them. My mobility was compromised, but I could still do pretty much anything I was doing before the diagnosis, except for running or jogging. The only accommodation I had to make, which I learned the hard way, was to avoid being outside during periods of high heat and humidity because it would sap my strength so much, I would need to take a long nap. 

Looking back on that time, my mindset was to put the blinders on, get whatever treatments I needed, and let the chips fall where they may. 

The MS has evolved from a minor foot drop to a leg that is limp and weak. I get relief from these treatments for maybe 5 to 7 days, but I’m wondering if this is more from the steroid infusions instead of the apheresis treatments and semi-annual Ocrevus infusions. Regardless, when it starts to wear off, I slowly regress over the next three weeks before I get another treatment, but the between treatments experience is more difficult than before because of the arthritis and the progression within the bad leg.

I think I am more psychologically wedded to continuing this because of the fear of what might happen if I stop. What I can contribute to the maintenance of this house and yard has shrunk significantly over the years, but I still can take care of my personal needs and manage to do some chores, but the degree of difficulty of doing these things is much higher. I do very little outdoor work that requires me to be upright. I have hated watching K having to take on more of the chore burden, and neither of us are getting any younger. I loathe the idea of being completely disabled and unable to contribute the small amount that I currently can, but it feels like that will eventually happen regardless of what I do.

From a practical perspective, healthcare is going to take a bigger chunk of my overall income now that I’m not getting a regular paycheck, and at what point in time will it become cost prohibitive? My neurologist has suggested I add IVG (IV immunoglobulin) infusions to the monthly Apheresis/Steroids routine and is in the process of trying to get that approved, but will it help, and will it add to the misery of the two days that follow? And with all the turmoil going on in Washington that sadly will continue over the next three years (at least), how will that affect my coverage and out of pocket costs? Hospital revenue is going to shrink with Medicare and Medicaid cuts and the elimination of the ACA subsidies, so how is that going to affect the availability of services? I like the idea of having more income to do fun things, but the number of those fun things have shrunk dramatically over the years due to the mobility issues and if those got worse if I stopped getting treated, what good would that extra income be? 

I’m frankly getting tired of doing this but don’t see any recourse. It’s like being on a merry-go-round you can’t get off. The conundrum is not knowing when to stop. I don’t see myself continuing this forever, but I’m not ancient and would like to believe I have a lot of potentially okay years left. I’m resigned to continuing the routine for now but can see the day where I say fuck it and throw in the towel. I’m not ready for the worst-case scenario if that were to happen and that is the biggest hurdle to overcome. It was better when I was younger and more naïve, but I can’t con myself into getting back into that headspace anymore.  The MS bill I knew would be out there when this all started is here, and that reality sucks!