Month: February 2022

WTF?

While I do my best to concede nothing to MS, I’m not reckless. I do what my body allows. Over the years I’ve become very aware of my body mechanics and consciously think about them whenever I am moving for two reasons. The first is because if I don’t, falling becomes a real possibility because my balance is completely shot and it doesn’t take much to throw it off. As a result, I average only a few falls a year. The other reason is the progression has slowly devoured my leg. Starting in the toes and feet fourteen years ago, it has insidiously made its way to almost mid-thigh. The ankle and knee bend slightly to the right when I walk, so I know that one misstep could cause something to tear. Needless to say, I am careful to a fault whenever I am upright.

So why the hell did I wake up Wednesday morning with a stiff and swollen knee?

It had become swollen before, usually because of strain I put it under when I work outdoors, but nothing like this. The joint was uncomfortably swollen, and weaker than normal too. At first, I freaked a little because I assumed it was the MS. I never had that moment where I stepped wrong or twisted it. I never did anything where I had the searing pain followed by immediate swelling and throbbing. So how couldn’t it be the MS? I reached out to my neurologist and made an appointment to see him the next day.

As the workday proceeded, the joint got stiffer, and it became a little painful. Then I remembered a day when I was simply walking from one room in the house to another when I felt a sudden pain in the knee and the leg buckled. Body mechanics, I thought, because the pain stopped as quickly as it came, and didn’t last. It was like a bee sting in the sense that it happened unexpectedly, hurt like hell, but only for a second before it went away. It was more shocking than anything else, and once I stabilized myself the knee didn’t hurt, and my walking was no different than before the incident. I don’t remember when this happened, but it wasn’t recent, which is why I hadn’t thought of it earlier.

Maybe I should see a doctor, I thought. Just in case. Long story short, the word blood clot was discussed at one point, which really caught my attention, but ultimately an x-ray was taken and the knee joint was fine. It was swollen, but as they poked, prodded, torqued and examined the joint, I felt no pain. I thought they were going to drain the thing, but apparently there wasn’t enough fluid to warrant it. Instead, I received a tapered dose of steroids to be taken over six days, with instructions to follow up if the symptoms didn’t improve. They speculated that I could have a partial tear or some loose body floating around in there, but since there was no pain, there wasn’t any urgency. Not that I minded. I hate needles, which you might think odd since I get stuck multiple times in my arms every month, but there is a big difference between hitting a vein and sticking something much bigger into a joint. Maybe it isn’t as bad I assume, but I’m in no hurry to learn.  

I’m on day five of the meds now and there has been no improvement. It’s worse, although it didn’t start that way. The day after the examination the knee was less swollen and felt looser. I figured they were right and stopped worrying about it. I still went to see the neurologist the next day. He didn’t think it was likely that this was MS related but understood my feelings about the pace of its progression. We decided to have a new set of brain/spine MRIs because the last one I had was over five years ago, and I left his office feeling positive about things.

Three days later, I can barely walk. I know what the MS feels like in my leg, and this is different. I’ve always walked slowly and laboriously, but never gingerly. I am now because I can’t put any kind of weight on the leg without feeling pain in one spot in the knee. I’m not completely incapacitated, but when I am on my feet, I’ve been reduced to walking slowly in a straight line provided I have a cane to take some of the weight off the knee. Even inside the house, which is a first. Stairs are tough.

Well see how this feels on Monday, but I’m not optimistic. Over the next couple of weeks, I will have to shoehorn an appointment with an Orthopedist and whatever they recommend, with a plasma transfer and Ocrevus infusion, and a brain/spine MRI. Swell! I long for the old days, when I rarely went to a doctor for anything, and the only times I was in hospitals was as an employee, not every month as a patient like I am now. The main reason early retirement is not a serious consideration is because of my health insurance.

I know I’m jumping to conclusions about the knee. I’ve been off my feet most of the day, and it does feel a little better. But as you can see, the knee isn’t pretty and something still feels wrong. The only saving grace is the knee is in the leg affected by the MS, so I am used to not having the leg be able to do much. If this was happening to the good leg, I literally would not be able to walk.

So off to another doctor I go, hoping to get answers and solutions. One of the questions concerns healing with MS. If they scope the knee and repair stuff in a leg that is consumed by the effects of MS, does that impact or compromise healing? It’s a nerve thing, so I don’t think it should, but I am curious.

Regardless, this needs to get taken care of because I don’t want this to linger when the warm weather gets here. My life is sedentary enough.

Disconnected

It would be an exaggeration to say I’ve been a funk the last couple of months, but something has felt off that I haven’t been able to quite put my finger on. It isn’t pandemic fatigue, although it exists. I couldn’t articulate until it came out of the blue yesterday like a lightning bolt. I’m not sad, angry, or depressed. What I am is disconnected.

When you have MS, and your physical abilities are limited, you’re a little disconnected already because social things like golfing are off the table, travelling is a burden, and even going to places like the beach is hard. Your social agenda and calendar are limited to visiting friends or having them at the house.

We also have the socialization at work, where you feel connected to your peers and the organization you work for. Speaking for myself, I can always get a sense of the mood of the organization, and the political dramas that play out when I am in the office.  Almost two years of working almost exclusively from home made me realize I took that for granted, because now we are faces on a Zoom call. It isn’t the same.

The pandemic has changed a lot for everyone, but not all of it has been bad. We’ve learned not to take for granted some of the lowest paid employees that provide essential services, like day care providers, folks in the human services arena, the folks who store the shelves of our grocery and department stores, and the folks who work retail.

We’ve learned, I hope, how critical our healthcare employees and institutions are. I say I hope because I know that nurses and doctors are burned out from not only two years of being on the front lines, but because this most recent surge has brought out a lot of the ugliness that resides on our society today. How else can you explain the anger and vitriol they have had to endure from those who choose not to heed the advice to get vaccinated, are angry about the consequences of their choices, and vent their spleen on those charged with taking care of them?

Being disconnected lends itself to feeling isolated, alone, and completely detached of communal support about anything. We all want to be accepted and feel like we are part of something bigger than ourselves, but it’s hard when you feel like you are on your own and nobody cares. It robs us of optimism, self-esteem, and happiness.

I suspect COVID will be in our lives for some time. We will learn to adapt to it, and a new normal will evolve that allows us gather without having to think about the likelihood of getting infected. Some would argue we are already there, but when you have surges that push the infection rate from two or three percent to over twenty, I beg to differ.

 Some of the things that have evolved from this are here for good, and working from home will be one of those things, especially for people who aren’t in a field that requires being face to face with a customer, patient, student or client, like me.

I plan on going into the office once or twice a week this spring, when the weather is warmer and the infection rates are (presumably) back to the two the three percent range, and know others who feel the same way. We’re hoping it will help alleviate this feeling of isolation and being disconnected from anything normal or routine. If not, we may have to throw caution to the wind, continue to do what is needed stay reasonably safe from getting very sick or dying should we become infected (like getting vaccinated/boosters) and live life instead of existing.

Because the status quo really sucks.