Category: symptoms

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.

Back In The Treatment Saddle

saddle

With few exceptions, I have received plasma transfers and infusions of various drugs every month since 2008. From time to time, and especially within the last year,  I’ve wondered if I really benefited from these treatments, and pondered the possibility that I have been wasting my time. You’d think I would have learned by now because history has proven that when I have stopped or suspended certain therapies, the symptoms get worse.

I was due for my semi-annual Ocrevus infusion in March, but this was the time when COVID 19 was on the verge of introducing itself to our state, and I didn’t think it was a good idea to take immunosuppressant drugs. So I received the plasma transfer and steroid infusion that month, but deferred the Ocrevus until I spoke with my neurologist.

The gist of that conversation was my logic was sound, and that it might be best to defer any future treatments as long as my symptoms were stable, giving us time to learn more about the virus and what was about to happen in our state.

April rolled around. I was feeling fine, and I planned to skip everything for another two months, but then decided to keep a May appointment I had on the books for the plasma transfer and steroids infusion, just in case.  It’s a good thing I did.

Halfway into April, the bad leg started to feel weaker, and I began to question the treatment moratorium. Then the falls started.

I don’t fall very often, maybe once or twice a year, and almost always when I am careless and not paying attention to something. That has always been a good barometer for how I am doing. During a three week span from mid April into May, I fell four times, and it wasn’t due to carelessness. My leg felt like it was turning into jelly, and walking around the house was more difficult, especially in the evening, as I was grabbing onto and leaning against anything within reach to get from point A to point B. Needless to say, this abstinence wasn’t working, so last Thursday I bit the bullet and headed back to the hospital to resume treatments, desperately hoping that I didn’t wait too long and that what I was experiencing was my new normal.

I was also wondering how different the experience would be compared to the pre-COVID days.

The drive to the hospital wasn’t all that different in terms of the traffic. It wasn’t super busy, but it wasn’t like driving through a ghost town either. I’m not sure what I expected, but what I saw was fairly normal for that time of the day.

Then I arrived at the parking garage. The floor I park on has somewhere between 150 and 250 parking spots, and the handicapped spaces, which are limited, are always full regardless of how early or late I arrive. Not only were those spots readily available, but I counted a total of 10 cars parked on the entire floor (when I left it was down to 6). I knew from my work that volume was down significantly, but looking at numbers on a spreadsheet is one thing. Actually seeing what that means has more impact, and I was honestly shocked at how empty the garage was.

The first order of business when I walked into the building was to make sure I was wearing a mask (the hospital provides them to those who don’t) and confirmed that I had an appointment (no visitors are allowed). Normally I head directly to the elevator and go upstairs to the treatment area. Instead, my temperature was taken, and I was asked a bunch of questions regarding where I have been and who I had been in contact with before I could proceed. The experience walking from where I started to the treatment area was similar to that of that parking garage: there weren’t many people around.  

The treatment area was on a different floor, having moved one floor down. The top two floors were exclusively dedicated for COVID patients, and the floor below those was being used as an ICU for these patients. The floor my treatments were usually on was left open for potential overflow.

The new treatment location was much smaller and felt claustrophobic. I was the only patient there when I arrived, and although one other patient did arrive after me, we could not see one another. In the pre-COVID days, the main treatment area was packed.

I had to keep my mask on the entire time I was at the hospital, and everybody who worked or was being treated at the hospital wore them too. I also learned a new term. When I temporarily removed my mask to drink some water after having it on for an hour and a half, the influx of fresh air was cool and refreshing. I made a comment about it, and my nurse congratulated me for experiencing my first “airgasm.”

The roads were empty during the drive home, which was a little eerie. I had left during what would normally be considered rush-hour, but the cars on the highway and the state routes were few and far in between. There were less vehicles on the road than you’d experience if you ventured out early on a Saturday or Sunday morning. The ghost-town type experience I wondered about had certainly come to fruition. I didn’t see many cars. In fact, I didn’t see much life at all.

The actual treatment experience was the same, which I expected. Finding veins was a piece of cake, presumably because I had gone more than two months without a needle stick. Later on in the evening it felt like I had more steel in my leg, and a week has gone by without any change. So I am cautiously optimistic that I dodged a bullet on the progression front. 

After speaking with my neurologist on Monday and talking about how I was doing, we decided to continue getting monthly plasma transfers and steroid infusions, but the Ocrevus will be deferred indefinitely. It has been nine months since my last dose of the drug, and I had assumed that my B cell level would be back in the low average range by now. I was shocked to learn that was not the case. The low end of average, by whatever units they measure it, is 4. My level was 0.9, so I’m not even close to normal. 

This development has changed my point of view regarding a number of items. I’ve been careful about social distancing, wearing masks and gloves when I am out, and things of that nature. But I have also been stubborn about continuing to do normal things, like shopping for groceries. So we’ll be having most of our shopping done by the online services that provide them for the indefinite future.

Then there is the whole returning to work thing. I miss the office and the people I work with, and presumed I would be returning once the state and the health system started to relax its restrictions. Now that I know my body’s ability to fight off infections is significantly compromised, I can see myself working from home much longer than I ever anticipated or wanted. That will be a different discussion for a different day, but I can’t see placing myself among crowds of people, even with a mask, until a vaccine is developed. Why take that chance?

I’m not afraid, will not become a hermit, and will venture out when necessary, but the definition of necessary has certainly changed. I guess we’ll see how it goes.

As a post-script to this narrative, I must say that the commute to and from the hospital, my employer of the last twelve years, opened my eyes. It was a wonderful experience, one that afterwards felt like I had temporarily busted out of jail. I had forgotten what it was like to feel free.

The commute was liberating. It was great to feel normal again, and to revisit the world beyond my self-imposed three mile radius. We take these mundane experiences for granted until they aren’t mundane anymore, and I didn’t realize the impact of what that really felt like until I was able to spread my wings a little.

I yearn for the day that kind of life can resume.

 

Age or MS?

faucet

I don’t complain about getting older. There’s no point to it, and besides, it beats the alternative. But one annoying and frustrating symptom has become exponentially worse lately, and I’m wondering how much of it has to do with MS.

As men age, it is not uncommon for us to have to urinate more often. From what I understand, the prostate increases in size and presses against the urethra, which prevents us from fully emptying our bladders. So when I found myself going more often at night and during the day, I wasn’t surprised. Besides, there is medication that helps remedy the problem, and when I first started taking these meds it definitely helped. But now these meds are as useful as tits on a bull.

To put it bluntly, I can’t hold my water, am constantly dealing with what I refer to as a leaky faucet, and it is driving me out of my mind. I have to wear pads to absorb the drips (and sometimes more than a drip) and have a urinal in my car in case the need becomes extreme and I’m not anywhere near a bathroom. I’m guessing that I’ve had to pull over and use it a dozen times over the past year.

I had the unpleasant experience of dealing with a kidney stone that had to be surgically removed a couple of years ago. It came as a complete surprise, and I hope to never experience it again. My urologist told me that if I didn’t consume a ton of salt (I don’t) and drink around 100 ounces of water a day (I didn’t), I would never see him again. From then on my water consumption jumped from practically nothing to that magic number. Keep in mind that water does not include coffee or beer.

So I know part of the reason I pee all the time is because my bladder is always full. But there is more to it than that.

First you should know that I typically start work between 5:30 and 6:00, and the first thing I do when I arrive in the office is get a cup of coffee (12 oz). Once that is consumed I start filling my mug with hot water, and consume 100 ounces between seven and noon. During that time I make the trek from my desk to the men’s room every half hour or so. Once the 100 ounces is consumed I don’t drink anything.

So, the other day I made three stops to the men’s room after my last mug of water, including as I was leaving the office for the trip home. Keep in mind it had been over three hours since I drank any liquid of any kind.

When I arrived home, 45 minutes later, I had to rush to the bathroom because the faucet was dripping. Then I went to the basement to work out on a recumbent bike I have, and had to inturrupt my workout after 20 minutes because I had to go again. Then after I returned and finished my routine (less than fifteen minutes later), I found that I had to go again once I got into a standing position. Once upstairs I sat for a while before getting up to set the dinner table, and had to go yet again. To make a long story short, I had to pee seven times in less than three hours, and this was long after I consumed any liquid.

It seems that anytime I go from a sitting to upright position, or do anything that could get things chruning, I have to go. Immediately! It’s as if gravity triggers the need to void whatever is in my bladder, and since my muscle control down there is much worse since the MS, the faucet begins to drip. If I don’t attend to it, it will become a flood. Fortuantely that hasn’t happened yet.

It’s maddening. I literally have to plan my day and where I might be going around the amount of liquid I’ve consumed and whether there is a bathroom I can use. I hate using the pads, but need them all the time. Who wants to feel wet all day long or, even worse, walk arond with a wet spot in a place it doesn’t belong? On the days I have my plasma transfers, I literally can’t drink anything for at least two hours prior to the procedure, because once it starts I can’t get up and aren’t supposed to move my arms. The dilemma is water helps fatten the veins, which makes them easier to find.

Age and MS are probably both at work here. I am obviously not emptying the chamber whenever I go (age), but the frequency and urgency in which the need arises is because I can’t hold anything (MS). It’s as if there is nothing to stop the flow once I stand up, which is maddening for someone who used to be be able to hold it all day long if necessary.

At least I don’t have this issue when it comes to empyting the intestines, which I know can be problematic for folks with MS. I don’t even want to contemplate what that would be like.

 

 

 

 

 

 

Let It Bleed

Bleed

I’ve been taking MS meds for over eleven years. There was an eight year period, which ended two Septembers ago, where I received a monthly infusion of Cytoxan, a chemo drug. Now I get Ocrevus infused twice a year instead.

I’m not the most observant guy in the world, but there are two things about my body that have changed, and I believe these meds are the root cause.

The first is I have lost all the hair on my legs. Now, I was never Sasquatch when it came to body hair, but I had a pretty decent pelt covering my legs for as long as I can remember. That is no longer the case. I’m sure it has been gone for some time, but I never notice these kinds of things. K made this observation a while ago, and I am sure it had been that way long before she mentioned it.

The odd thing is this hair loss as not occurred anywhere else: not my on my arms, chest, head or the nether regions. All remain the same, except for my head, but that’s more of the routine thinning that comes with age. So if the meds have anything to do with it, why there and not anywhere else? It’s odd, but quite frankly, I really don’t care. I am wondering however if anyone has experienced something similar.

The other change concerns the fact that my skin is about as fragile as rice paper. By that I mean I get bruises, cuts and scrapes which draw blood that never used to happen before. Most of the time I’m not even aware that it’s occurred.

Take last weekend for instance. I was abusing my body on a job where Nidan and I were making a patio outside the back entrance of the new house by laying a couple of hundred paving stones on a prepared surface. He lifted these stones from pallets and carried them to me, where I laid them in a grid that ultimately created a patio that was about twenty-three feet long and four feet wide.

I was on my hands and knees most of the time, but did have to get up on occasion, or lean onto or into something to keep my balance. The only time I knew I cut myself occurred when I got up from my knees near a window, and as I raised myself I felt the fleshy section of the back part of my shoulder blade dig into the corner of the window frame.

Back in the day, nothing would have come of it. At worst, it might have resulted in a small bruise or perhaps a small scratch that didn’t break skin. Instead, I lost a small chunk of skin and it drew enough blood where I could feel begin to trickle down my arm. So K exhumed a small alcohol pad  from the first aid kit, cleaned the wound (which felt wonderful), put a Band-Aid on it and we were good to go. It still looks nasty five days later.

When we returned home after eight hours at the site, Nidan noticed a gouge on the back of my leg near the heel that I didn’t know was there, and have no idea how it got there. I also noticed about a half-dozen zig-zag type scratches that had dried blood on them, in addition to a nickle-sized abrasion on one of my kneecaps, presumably from being on my knees all day long. I could see that happening if I was kneeling on solid stone, but I was kneeling on a cushioned pad instead. Somehow, the constant shifting peeled several layers of skin, and what I wound up with was an angry, seeping abrasion.

As I was finishing up that day I noticed that the nail on my big right toe was sore. When I was on my knees, a lot my weight was placed on tops of my feet, which were pressing into the patio surface most of the day. I inspected the toe and saw nothing unusual, and therefore didn’t give it much additional thought.

My foot often twitches during the course of the day, and when that occurs the big toe usually curls upward into the toe of my shoe. Most of the time I don’t pay attention to it, but yesterday my toe hurt every time it curled up. Upon removing my sock to inspect the cause, I saw that almost half of the area under the nail had filled with blood and was turning blue/black color. If anyone of you have ever banged your fingernail with a hammer or mistakenly kicked a hard, immovable object, you know what I’m talking Toenailabout.

These types of things have been occurring for several years, with more frequency each subsequent year.  Trivial mishaps that might have resulted in a bruise or small scratch that didn’t break the skin’s surface, always create a bruise or draws blood now, and sometimes a lot of it. Nothing that is stitch-worthy, mind you, but enough to use several tissues to stem the tide. Since my balance is so bad, I am frequently bumping into something, and if that something has a sharp corner or edge, I bleed.

My Dad lived until he was 96, and his 96 year old skin was a lot tougher and more durable than mine is now. The only explanation I can come up with is that the meds have done this. What else could it be?

Hopefully it won’t get any worse.

 

 

 

Fatigue

fatigue

I get monthly treatments for my MS: apheresis (plasma transfer) every month, IV steroids most months, and Ocrevus twice a year.

Yesterday was the day I made my monthly visit to the apheresis clinic where I have the procedure done. I’ve thought of the whole plasma transfer thing as kind of a macabre, modern-day date with a vampire, the major exceptions being that it doesn’t involve my neck, and what is removed is replaced. For those of you who have followed this space for a while, you may remember me describing the process a long time ago. For those of you who haven’t, or may have forgotten and are curious, you can refresh your memory here.

The reason I bring this up is because one of the lovely symptoms MS can bring to the table is fatigue, and I’m not talking about the feeling tired and run down variety. No, the kind I am talking about is the bone crushing, soul-sucking, quasi-paralyzing kind.  I’ve read about how this can affect people through various articles and blog posts, but never experienced it for myself. Until yesterday, that is.

Now, it is not unusual for me to feel tired and a little run down after the procedure, particularly once I get home. In fact, this is something I feel all the time, but it is manageable. I might feel like I’m walking in molasses, or that my head feels like it is full of cotton, but it’s no worse than having a bad night’s sleep. But for some reason, yesterday was different.

It didn’t start out that way. I drove to the building site of our new home once my procedure was done to help K remove some of the slush that had settled onto the floors. The roof is up but the structure is not yet fully enclosed (more on that in a future post) and we have had a really strange winter so far (more on that too!) where most of the storms have involved a little snow, followed by sleet, then freezing rain and/or rain. Such was the case Wednesday night, but that was followed by sunny skies and fifty degree temps in the afternoon, and we wanted to remove what melted or plopped onto the floors before it re-froze.

K had done most of the work by the time I got there, but I started to push and scrape what I could find out of the structure when it hit.

The first sensation was a wave of fatigue so strong that I became a little nauseous, so I slowed the pace down. As we left the site ten minutes later, it felt like my feet were stuck to the floor, and I felt very woozy. The normal cotton in my head was replaced by thick sludge. I never said a word to K because she would not have wanted me to get into my car and drive home, but it was less than a five minute drive, and it never felt like I was going to pass out.

Once we arrived home, I struggled to get my muck-boots off, then proceeded to the rocker-recliner. Once settled, I leaned back, closed my eyes, sunk into the soft leather, and my body felt like it weighed 1,000 pounds.  It felt as if I was literally glued onto the chair. I wouldn’t lift or move my head, could barely move my arms or legs, not that I wanted to, and even moving my fingers felt like a overwhelming chore.

Although my eyes were closed, I couldn’t sleep. I heard everything going on around me, but it felt as if I was in more of a trance-like state: part of me was present but another part of me was in never-land. The experience was more weird than alarming. I stayed like that until it was time for dinner, when I peeled myself off the recliner, and trudged over to the kitchen table. I was suddenly ravenous once I saw the plate of pasta, shredded cheese and vegetables, inhaled it in less than five minutes, had seconds, and began feeling a little better.

Afterwards, I did a couple of chores, but the fatigue started setting in again. So I announced to the room that I was done for the evening, dragged my sorry ass up those fourteen stairs, took a shower, and shuffled into the bedroom. Once comfortable, I turned on the television, queued up something on the DVR, pulled out my vape stick with the MMJ, and took two long pulls off it instead of the normal one. Hey, I figured feeling supremely stoned would be a lot better than what I was currently feeling, and I was right. Consumed by what I was watching, I forgot all about the other stuff. A few hours later, I was ready for sleep, closed my eyes, and had a long, uninterrupted, dreamless sleep. The fog hasn’t completely lifted as I write this, but it’s a pin-prick compared to yesterday’s sledgehammer.

I don’t know if this was an anomaly or if it will become the norm. The one thing I did not do before the procedure was eat much. Other than coffee, I didn’t have any breakfast and had a can of soup for lunch, which I thought would be enough. I’m guessing that yesterday’s experience may become a once in a while thing, and we’d test that theory under normal circumstances next month. But March is one of the months where I get the Ocrevus in addition to the apheresis, which brings a completely different host of symptoms, so we’ll have to wait for the time after that to see if this almost-paralyzing fatigue occurs, assuming I remember what it felt like.

Today is a new day, one in which the steroids-induced hiccups have arrived and will plague me throughout the day and night, becoming worse and more frequent as the day gets longer. If I’m unlucky, they will make it hard to fall asleep or wake me up throughout the night. I hate those little bastards. But we do what we have to do to avoid a date with the dreaded wheelchair.

Besides, I can always double or triple up on the vape stick if it becomes intolerable. That always seems to settle things down.

 

 

 

We Interrupt Your Regularly Scheduled Program For This Important Announcement

leg

This was one of those weeks where coming up with a topic to write about was a chore, and writing about said topic was tedious at best. For the better part of an hour and a half, I fought my way through writing about something my heart wasn’t really into, and trying to make it sound entertaining and relevant. When I was done, I had my typically shitty first draft completed, and was poised to make it look pretty and shiny today.

Then the obvious hit me like a bolt of lightning.

As you know, most of my recent posts told the story of my decision to dip my toe into the medical marijuana world, and what the experience was like. A lot of readers were enthused about the journey I described and asked for updates. My plan was to go back to that subject in a month or two, but after I had closed the file on the draft I was going to polish today, I had an epiphany about something that happened within the last week.

I am walking better. Better than I have in years.

When I had my last flare, the symptoms moved from just below my knee to my lower thigh above the knee. This was a game changer because I no longer had a firm foundation below me. My leg felt like a broken kickstand, one that could easily wrench violently to one side, tearing ligaments in the process. My limp became more pronounced, my balance became infinitely worse, and the leg felt like it didn’t belong to me. Performing any physical task became more difficult and potentially dangerous, as my tales of woe about snow removal this past winter described.

But as I rose from my recliner to grab a can of seltzer from the fridge last Saturday evening, it occurred to me that I was actually bending my knee as I walked, and moving the leg in more of a normal walking motion rather than having the knee locked, and swinging the leg forward by the hip. The knee felt strong and stable, which meant the entire leg felt more controllable, and I felt steadier on my feet.

Keep in mind I was a little buzzed at the time, compliments of my PM dose of CBD oil, so I asked an impartial observer, Kim, if it was my imagination or if I was actually walking better. After watching me move around the living room and head back to the recliner, she agreed it appeared that way.

Talk about a holy shit moment!

I wasn’t going to take this as gospel though, because part of me was wondering if I was over dramatizing something because I wanted to justify taking the new med. It just so happened that I had my quarterly neurologist visit two days later, and I told Dr. G. on Monday that it felt like the leg had improved, that I had reclaimed some strength and control in the knee, and was walking a little better as a result.

He put me through the paces, and lo and behold, it wasn’t my imagination. I’m not going to bore you with the details of what the “paces” are, but he confirmed what I suspected. There was measurable improvement.

That assessment was reconfirmed yesterday, two days after I saw the neurologist, during my annual physical. My PCP put me through similar paces and drew the same conclusion. There is therefore no doubt I’ve regained some territory from my MS foe, and the functionality within my leg has improved to where it was before the last flare.

Great news, yes, but let’s not get carried away. What I’ve described represents a subtle, incremental, improvement. If I were to place a percentage on how much better I think I am, it would not exceed ten percent. I still need my cane, my balance still sucks, and I still can’t run, jump, or even consider going on a dance floor. I remain disabled.

However, walking with the cane doesn’t take as much effort, and I can actually walk faster and in a straight line with the cane instead of meandering from side to side. I can also lift the leg a little where before I had to grab it around the thigh or calf to lift it, particularly when getting into and out of my vehicle.

Most importantly, I have increased confidence in my ability to do stuff, where before I shied away from tasks for fear of falling or hurting myself. I’m actually looking forward to resuming my exercise routine, and am curious about how the leg will feel when I push myself.

After years and years of things slowly getting worse, this is the first time something sustainable seems possible. So what caused these changes?

I started taking Super Biotin about seven weeks ago, and the CBD Oil began a little less than three weeks ago. These are the only new items that have been introduced into my routine. I’m sure the CBD oil is at work here, because I was on Super Biotin once before for a longer period than the current six or seven weeks, and nothing changed at all. I don’t think it is any coincidence what I have experienced occurred shortly after I began taking CBD every day.

Is the improvement here to stay? Logic says no. In the past, I experienced improvements when new treatments or a new medication was introduced, but they were short term in nature, and faded as my body got acclimated to them. I’m therefore trying not to get too giddy about this recent development. While I would be sad, it would not shock me to see these changes regress over time, and have the weakness climb back above the knee.

Hopefully I am wrong, but I’m not dwelling on this possibility. Instead, I’m cautiously optimistic for the first time in a long time that maybe, just maybe, I’ve found something will actually help control my symptoms, and am enjoying every minute of this new feeling. I am a true believer in the benefits of medicinal MJ for MS.

As a matter of fact, I’m going back to the dispensary Saturday morning to re-load.

Heat

summer

The summers of my youth were idyllic. I remember family vacations at cottages on the Connecticut shore, where a Good Humor truck was always parked near the boardwalk. Days would be spent frolicking in the water, crabbing, and riding bikes. Twice a week, we’d grab blankets, pillows and snacks shortly before sundown, and trek to the beach to watch a movie. The night air was warm, the sound of the waves gently lapping on the shore was always present, and the sand was filled with chairs and blankets as kids and families gathered to see what was typically a Disney movie. This was Heaven for a ten year old boy.

Days at home during the summer was spent riding bikes all over town, visiting a friend’s house to go swimming in their pool, or playing baseball all day long at one of the large grassy fields near my house. When it wasn’t raining, the only time I was in a house was to have breakfast, lunch, dinner and to sleep.

Summer was, and always has been, my favorite time of the year. The onset of summer vacation from school was wildly anticipated and celebrated, even for those of us who liked school and were good students. Summer days seemed to last forever when I was a kid, and while the new school year always arrived faster than expected, the break felt like a long period of time.

My enthusiasm for the season didn’t diminish when I became a teenager, and had to obtain a summer job. All that meant is I had less time to have fun, but fun was still to be had, and I pursued it with the passion of a religious zealot.

What is there not to like about summer?  It’s much more enjoyable to throw on a t-shirt, shorts and sandals than to bundle up in layers, struggle with a pair of boots, and find places to stash winter gloves or a hat. There are no limits to what you can do in whatever free time you have compared to the cold winter months, when darkness prevails, you’re in hibernation mode, live in sweats, and spend most of any free time you have in front of the boob tube.

Even summer chores are more pleasant. What would you rather do, mow the lawn, tend the garden, and maintain the pool, or scrape ice and shovel/plow snow?

Another thing I loved about summer was the heat. You see, I would always rather sweat than freeze, and there is something about sweating in the summer heat that appeals to the prehistoric recesses in my brain. When I lived in Southern Indiana for several years, the summers were brutally hot and humid. From Memorial to Labor Day, a typical day would involve temps in the 80’s and 90’s with extremely high humidity. I never lived in a place where it would be hotter and more uncomfortable at six in the afternoon than it was at two or three. Being land-locked, the heat would just build and increase throughout the day, which is one of the reasons they had such horrific storms. You could literally walk outside and start sweating so badly you felt as if you were melting.

But I didn’t mind it one bit.

New Englanders can wax poetic about the beauty of our autumns, and feel invigorated by spring, where everything quickly explodes into a lush green after the long winter months, but I will take summers any day of the week.

It is too bad summers don’t like me that much anymore.

I say this as we approach a stretch where we will have a week of 90 to 100 degree weather and high humidity. Once a cause for celebration it instead is a reason for caution because, unfortunately, heat and MS don’t co-exist very well.

Pretend for a minute that your body runs on a battery, which gives you the energy to work, play, move, think, concentrate, or do virtually anything. Food and rest help recharge it on a daily basis, which in turn allows you to function from day to day.

For some reason, heat drains my battery to virtually nothing the longer I’m exposed to it, and I’m not unique. Many, if not most, MS Warriors have this issue. I believe an increase in body temperature is the cause for this power drain, but I don’t know if that is the true clinical reason.

The drain occurs more quickly if I’m active while it is hot, but it has gotten to the point where I can feel a difference by simply sitting outside for an extended period of time. When humidity gets added, the effect is exponentially worse.

Imagine your body feeling completely limp, like every bone is missing. Imagine feeling so weary that the idea of getting out of your chair feels overwhelming. Imagine your  head feels like it weighs one hundred pounds. Imagine your mind feeling like a vast wasteland of emptiness, where the act of thinking feels like a herculean task. Hell, even the idea of sleeping seems like a herculean task. Your focus becomes a narrow pinpoint that centers on the thought that you can’t believe how shitty and utterly spent you feel.

I’m describing a worst-case scenario, but I’ve been there on an occasion or two. Most of the time the feeling is one of significant physical and mental fatigue, and the mental aspect is far worse than the physical.

Some warriors use cooling vests to regulate their body temps during the hot summer months. If I still lived in Southern Indiana I’d probably own several and wear them constantly in order to survive their summers, but they aren’t necessary in my neck of the woods.

My respite from the heat is a pool, which includes a deck and large umbrella that provides a lot of shade. The umbrella cures a lot of sins in terms of the heat from the sun, but nothing can escape the humidity. Nonetheless, immersing myself in the pool provides relief from the heat, and cools my body temperature immediately. It isn’t a perfect solution, because prolonged exposure to the hot sun can still make me feel like the battery is at fifty percent or less, even when I’m in the pool. But it certainly makes life more tolerable, and who doesn’t love the feel of being submerged in comfortable, crystal-clear water on a hot summer day. It brings out the kid in all of us. I especially love to float in a raft where my butt and feet are in the water, my upper body and head is resting comfortably in a semi-upright position, and a cool beverage is secure in the cup container within arm’s reach. It doesn’t get any better than that!

Every winter and summer provides a platform to gauge the pace of my progression. The struggles of maintaining a clear driveway this past winter told me there was a definite progression compared to the previous year. Now, this next week will test the theory from the heat and humidity perspective. How much of a difference will I notice compared to last summer?

When I left the house to drive to work this morning, it already felt like a sauna outside, and the sun hadn’t even risen yet. I know it’s going to feel like an oven for the foreseeable future, but I have stuff to do. So it will be interesting to find out if I feel like a rag doll when the evening rolls around.

I hope not. I don’t mind bitching about the winter, because the winter deserved to be bitched about, but I hate the thought of being a prisoner in my own house during my favorite time of the year. I can live with watching people enjoy themselves from the sidelines. Watching it from the inside is a completely different story.

 

 

 

My Restless Leg

Restless leg

The potpourri of symptoms I’ve previously chronicled include a severely drooping foot, no leg strength from just above the knee, an ankle that constantly wants to turn sideways, and occasional cramps in my toes, the arch of my foot, and my calf. And let’s not forget balance, specifically the lack thereof. I’m not exaggerating when I say that a strong and sudden gust of wind can cause a loss of balance and an unexpected fall.

The one symptom I’ve never mentioned before, which happens to be the most annoying, is something called Restless Leg Syndrome (RLS).

Here is a quick definition: RLS causes unpleasant or uncomfortable sensations in the legs, creating an irresistible urge to move them. Symptoms commonly occur in the late afternoon or evening hours, and are often most severe at night when a person is sitting, resting, or lying in bed.  They also may occur when someone is inactive and sitting for extended periods (for example, when taking a trip by plane or watching a movie). There are a variety of sensations that generally occur within the limb that prompt the jerking movements: crawling, creeping, pulling, throbbing, aching, itching, and a feeling akin to an electric current. Research shows that people with MS are about four times more likely to have RLS than people in the general population.

In the scheme of things, my RLS isn’t a big deal. There is no pain or discomfort whatsoever that alerts me to its arrival.  Nonetheless, it’s aggravating to the extreme.

First of all, I can’t control it. Without warning, a jolt electric current surges into my lower leg, causing the toes to curl upward and the foot to lift. Sometimes it’s a quick twitch, and other times it lasts a few seconds, where the big toe is trying its damnedest to touch my shin, or the leg sticks straight out with the heel pointing forward, before it flops back to earth.

Secondly, when the twitching begins, it can occur as many as three times per minute. Do the math. It’s hard to enjoy anything when your leg acts like a flopping fish desperately trying to find its way back into the water.

I’m not self conscious about the way I walk or things of that nature, but I am about this, primarily because I think it looks bizzare. When someone parks in a handicapped space or you see someone with a cane, you expect to see them them walk differently or have a more difficult time getting about. Imagine sitting next to someone who looks perfectly healthy at work, in a movie theater, a sporting event, a wedding, or sitting in their living room over drinks, and their foot/leg begins to spasm and doesn’t stop. If you get too close, you might even get kicked.

The spasms always occur when I’ve been sitting for extended periods of time, like right now as I’m writing this piece. They can and do occur at work, but all I have to do is get up and walk around to make the twitching disappear. I don’t always do that because the spasms don’t impact my ability to do my job, but there are other times where getting up and walking around is impossible, like when I’m driving.

I have to be extremely careful when the leg starts flailing while I’m driving, because my bad leg is the right one, which controls the accelerator and brake. Try accelerating or braking  when your foot is trying to curl backwards. I’ve learned to brake with my left foot if necessary, and most of the time I can coast the few seconds during which the spasm occurs. If I’m on the highway when this happens, cruise control comes in handy. Nonetheless, my next new car is going to have to be equipped with hand controls whether I like it or not.

If I am at a public event or gathering of some kind, I don’t stay on my feet for extended periods of time, which means I’m usually sitting. In these situations I try to make sure there is some distance between me and the person I am sitting next to or across from, and do whatever I can to hide my legs. Sometimes, I’ll cross my feet to prevent the leg from protruding too far should the spasms start.

Then there is the issue of trying to fall asleep when RLS is active. In K’s recent post, she rightfully said that I don’t get enough sleep, but one of the reasons for this is that it doesn’t seem to matter what is going on with the leg when I’m dead tired. I’ll still fall asleep in five to ten minutes. Otherwise, the twitching, which occurs almost every night night, makes it hard to get comfortable.  I become restless, annoyed, and eventually wide awake. Of course, I could walk around to make it stop, but it takes more than a brief stroll for that to occur. Either way, it takes a while before sleep comes, and I get even less sleep in the process.

These are some of the reasons why I find RLS so annoying, but it is not the reason

K lamented that I do a lot of things that Shodan can and probably should do. Why? Because it gives me a sense of control over my tormentor. From my perspective, giving into MS by letting others do the work I am still capable of doing is like conceding to an enemy that wants me  to wave the white flag of surrender, which I simply refuse to do. So even though snow removal is very difficult, and I do stuff in the yard that my son could do more easily and in a fraction of the time, I find ways to compensate, which allows me to complete the task. This is all about my will being stronger than the MS, and not letting it get the best of me.

None of that works with RLS.  It’s as if the disease is taunting me. “So you think you can ignore me? You think you have control?” it whispers. “Let’s test that theory while I fuck with your leg for a little while. See how that works for you!”

I am absolutely impotent in this situation, which serves as a not so subtle reminder that I’m denying this inconvenient truth: if and when MS decides to throw the hammer down and takes control over everything I stubbornly cling to, I will be powerless to stop it.

And that is what bugs me the most.

I’m not sick…I’m healthy impaired

I don’t recall exactly how I came across Billy Mac. It was either through a fellow blogger (probably Grace) or he happened to stumble across one of my posts and liked it, which prompted me to peek at his blog, Superman Can’t Find a Phone, where I read this.  https://goodtobealivetoday.wordpress.com/2018/02/08/hell-what-do-i-know/

I was hooked and have been following him ever since. Billy is a hell of a writer. He’s insightful, brutally honest, self-depreciating, and laugh out loud funny. I love his perspective on people and life, so much so that I extended an invitation to him to grace the pages of my blog with his candor and wit. While I have never met him, although I hope to some day since we both live in New England, I consider him a friend who is among the band of brothers and sisters I have met through the blogging community.

If you have never read his stuff before, please take the time to visit his site and take a look. You will be glad you did.

Thanks for sharing Billy.

 

My name is Billy Mac and I am honored to have been asked by Steve to guest post on his blog. Steve is an excellent writer and a supportive member of our blogosphere and I am happy to have discovered his little corner of the internet. We faithfully read each other’s work, share experiences and there is always a positive takeaway from our back and forth. Although it tends to break convention, I think of him as a friend though we have never met in person. He’s a good guy with a great story.

As with most connections, the question may be asked: “How did you and Steve find each other?” The answer is simple, we have a common connection, and that is Chronic Illness. Steve has MS, did I mention that? Steve’s blog is about the trials and travails of living with MS, it’s right there in the title. I didn’t lead with it because it’s only a part of who and what he is.

As a relative newcomer to the Chronic Illness community (I’ve actually had Kidney Disease for decades, but I only just accepted it on, what time is it? Yea, not that long ago) I am drawn to, and consequently follow many Chronic Illness bloggers. Many of these blogs were initiated by people like Steve and I, who have a condition that has affected our lives so profoundly that we want to share it, to inform others of it, or just reap the cathartic benefits of “putting it out there” to a world of anonymous, faceless strangers to read. Many bloggers with Chronic Illness are considered fine resources for their respective conditions with personal expertise in symptom management, links to journals, studies, and news updates. But if one were to bypass reading a blog because it is tagged “Chronic Illness” you would be passing on a great opportunity. I liken it to watching the evening news, seeing a teaser about a positive, uplifting human interest story and then changing the channel. You’re missing out. They tell a great story.

Sure, we write about our illnesses. But not exclusively. We write about our lives in all of its mundane details. We have jobs, we have families, we have social lives and we write about them just like everyone else. The twist of lemon, the ingredient that makes these blogs special is how our conditions impact, shape and affect us as we live our lives.  For example, Steve recently posted about the Blizzard that he (and I) had to clean up after last week. He told us about the ordeal of shoveling all of the snow. No big deal, right? Not really, until you remember that Steve has MS and that not only is he prone to fatigue but he has recently dealt with the minor nuisance of one of his legs simply giving out unexpectedly. It’s just another symptom to Steve, one more challenge in his daily life. But to the reader, his shoveling of snow just graduated from an ordinary chore to a goddamn human interest story. You will find such examples of illness permeating the everyday lives of normal people in all of these blogs. It’s easy to call them inspirational. They are, but at the end of the day, they are just regular people living their lives and not giving in to the challenges their illness throws at them. The resilience of the human spirit simply leaps off of the pages as they write.They are defining their situation before it defines them.

I am the author of Superman can’t find a phone booth and I”m a great story. I’m a great story only because I’m looking down at the dirt and not up. You may wonder where the Moniker of Superman came from. I assure you that it’s not born of inflated self-image. It is instead a very unflattering nickname sarcastically bestowed upon me by a loved one in recognition of my Superhuman ability to deny my illness. I was sick for decades but I didn’t take it seriously. I put on a good face for my family (to not worry my kids) and I dealt with my symptoms. My doctors said that I was in denial, they would later say that it worked for me. On the verge of dialysis, I received the best gift anyone could ever give, the gift of an organ donation. I had a kidney transplant and went on with my life. Then, out of the blue, the new kidney began to fail. And here I am, at the end of a long, downward spiral. I named my blog Superman can’t find a phone booth because I see myself as a strong person on the inside but without an outlet to express and release my inner self. With no phone booths in sight, I turned to the blog. Despite losing my house, my family and my career to my disease, I now find myself in a good place. With nowhere to go but up, I have a whole new outlook that I am sharing with anyone who visits my blog. I have accepted my illness and I am embracing the changes that I and my fellow bloggers with an illness are experiencing. I am part of a community. One that understands me, supports me and has watched me grow. I, in turn, support my peers and monitor their growth.

What are the takeaways from immersing yourself in the daily life of one with a chronic illness?

Here are some of mine:
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“You either get busy living, or get busy dying”
Andy Dufresne, The Shawshank Redemption

Be grateful.A dear friend of mine, who also has MS once told me that having MS was a blessing of sorts. I initially rejected this notion but I have come around. It has taught her, and myself, to be among other things grateful. Grateful to be alive, to be in a position to be a resource or maybe even an inspiration to another, grateful to understand the value of things that others take for granted.

Every day of your life matters. My doctor recently told me that I, with the help of modern medicine, may live 20 more years. The clock is ticking. This makes sitting around doing nothing a massive waste of precious time. No matter what I am capable of doing today, it is unacceptable to do nothing. Set goals, try to reach them. Better to reach for the stars and drag your feet on the rooftop than to reach for the ceiling and drag your feet on the floor.

Do something with your life. I would rather live 60 fulfilling years than live to 92 and have done shit with my life. Imagine yourself as a fly on the wall of your own funeral. What will people say about you? How many people will show up? Will you be remembered as a burden or an inspiration? Did you die the friend, husband, wife, son, daughter, co-worker and citizen you envisioned yourself to be? Write your own eulogy daily by cementing your legacy in every transaction.
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Leave nothing on the table. This is not just for the chronically ill. Some of us have a fast-moving Chevy meant for us. Don’t wait for tomorrow to do what you can do today. Make that call, take that road trip, pretend that “rainy day” is today. Tell people how you feel and leave them as if you’re never going to see them again. Talking to their stones simply sucks, granite can’t talk back. Everyone in my life knows what they mean to me.

Enjoy the moment. When you have your own mortality on your mind, even shoveling snow can be a moment. While I was shoveling snow last week I stopped to take a break. My heart was racing and my back hurt. As I collected myself I looked around and took a deep breath and truly absorbed my surroundings. It was a beautiful day, I wasn’t cold and it occurred to me that I didn’t have an unlimited amount of these moments, so I breathed it in and savored it.

Be your own advocate, but believe in hope. With advances in modern medicine, there is a potential cure for every disease, and I really hope for one for everybody involved. Steve has written extensively about being your own advocate, knowing your condition and learn all that you can about your condition. Sometimes doctors get it wrong. When I had my transplant, I was given a lot of information of what to expect. I was not told that my disease could potentially attack my new kidney and put me back to square one. Well, that is exactly what happened a mere 5 years after my surgery. I was furious at first, I felt like I was given false hope. But then I reflected on what I accomplished after my transplant. I attacked life. I rode a mountain bike and crashed it gloriously time and time again, every time I got up and kept riding. I hiked, I worked out, I treated my body like I wanted to live forever. If my doctors had told me about the potential to lost it all, I may not have done any of it.

Don’t focus on the “used to’s”. The “used to’s” are a major downer for the chronically ill. It is tough to reflect on what you used to be able to do before that you can’t do now. It is a reality we have to contend with. But at the end of the day, it’s dangerous thinking. Focus on what you can do today and do it well. When you can’t, you will deal with it.

Deal with it. At the end of the day, it comes down to one thing, how well you deal with what life throws at you. Some people out there clear some pretty major hurdles in street shoes just to get through a Tuesday afternoon. When I wake up and I only have brain fog, nausea, leg cramps and fatigue from waking up 10 times the night before it’s a good day. And that is nothing compared to the struggles of some.

Chronic illness has changed who I am. I am not only a different person, I am a better person. I listen more than I talk. I appreciate more than I criticize. I do more and procrastinate less. In the time since I started blogging, I have grown from a state of despondency to one of purpose. I think I am where I belong. I am working less and volunteering more. Wanting less and receiving greater rewards. In the process of downsizing I have achieved the real, the quality I have been searching for in my life. The prospect of death has improved my mortal campaign. I don’t fear death anymore. But I am simply terrified of the prospect of not living a full life.

One of my favorite quotes is “Be kind, for everyone you meet is fighting a hard battle.”
As a firm believer in this and an avid people watcher, I always look at a person and wonder what their life is like. But like most, I can’t always tell who is struggling and who isn’t. That’s why you’re encouraged to be nice in the first place…you don’t know. But if you had a way of finding out wouldn’t you want to know their story, maybe find a little inspiration? Something to make your own problems a little more ordinary? You can. Just by going to WP reader and punching in “Chronic illness”. You will have at your disposal as many “human interest stories” that you can handle.

We don’t want pity or sympathy, we just want our stories to be heard. What you take away from them….well, that’s up to you.

Advice from Tom … Get it Checked

Steve invited me on the show to talk a bit about health. I don’t really know anything about health. But my wife owns a stethoscope and I found a mask under the bathroom sink. Let’s get started. Tom. On Health.

Steve and I discovered each other, recently, through a mutual blogger. As these things go, he and I were impressed with each other’s content, each other’s body of work. I dug into his stuff about the same time as he dug into mine. I admire his writing style. Descriptive, informative, never dry. I love the way he subtly discovers his own path back to balance when he feels off course. I can relate to that. A good example was in November, when recent posts of his own prompted him to get back to the upside of down things in “Sunshine and Rainbows.” No matter what life throws at us, we have a choice on how we react. Life threw MS at Steve, but it never beat him down. Not once. In fact, just two days ago he plowed the snow. Really? Steve, we do have limits. Someday you’ll learn yours. Maybe. 😁

Last week, out of the blue, Steve asked if I’d be interested in doing a guest blog for his site. I love to write, and have always sought balance in the number of posts I do in a week on my own site, so I said “sure!” Of course, Steve founded his site as a means to share his journey with MS with “candor, humor, and brutal honesty,” so I said “you know I don’t have MS, right?”

In fact, I have had only two light brushes with the world of MS. A few years ago, when I signed up to Facebook, I reconnected with all my old high school/church group friends. One of them, a little sister to a close pal, whom I helped recruit into the group, had been diagnosed some years earlier. On Facebook, she would tell peripheral stories of days with it – of transfusions and immobility – but I never knew the depth of her ordeal. I only know it never seemed to break her kind and giving spirit.

The only other encounter I’ve had with MS was when President Bartlett revealed his struggle with it to the nation. I was aghast. He was the only president I ever really liked.

Steve said, “of course, I know that. Doesn’t matter, Tom. Be Tom. Do what you do.

“But keep it to the matter of health, if you can, in some way. That is the central theme.”

That created a challenge for me. As I’ve stated recently on my own site, I’ve visited the doctor twice (for checkups) in the last decade. And then back in high school, 30 years ago. Except for the occasional walk-in clinic visit to make sure rib or back pain wasn’t too serious, or to get something prescription-strength for a bad cold, I just don’t have any health-related experiences of my own. That’s a blessing, I realize, so not a complaint. Nonetheless I have opinions. I’m bigly in favor universal healthcare, the kind we see in what I call the “better countries” around the world. I also want to believe in the science of longevity, the likes of which Ray Kurzweil speaks about. I want to live forever, as impossible as that will be.

If invited back for subsequent visits maybe I’ll talk about those things.

But it hit me yesterday, while in the shower (don’t all breakthroughs come from there?), that I had a health-related story from last year, and maybe a lesson to teach. It isn’t about me. It’s about a friend. A co-worker. We lost him in 2017.

He didn’t die. I should point that out right away. But we haven’t seen him since the week after Memorial Day. And it was for the smallest of reasons. Well, it started small, but it damn near killed him, and it certainly changed him. We fear forever.

I’m in appliance sales, and this man was our delivery chief. Just as amicable a guy as you could imagine. And incredibly competent. I don’t believe he missed a day of work in 7 years. Strong, both physically and emotionally. Smart. Funny as hell.

The last day I saw him was the second day of a toothache. Not a normal toothache, but the kind of toothache that swells one entire side of your face. I never saw a toothache do that. For the second day in a row I warned him that he had to get that tooth looked at, or it could be really, really bad. He worked through.

The next day was my day off. The others at my workplace said he showed up, more swollen than the day before, and was sent home. “See a doctor, or don’t come back,” the boss told him. He saw a doctor. The doctor told him he’d never seen a tooth condition, swelling, or infection that bad. They gave him medicine, told him not to return to work right away, and wanted to see him again after the weekend.

Over the weekend, he nearly died.

Someone found him in his living room, looking like he’d already passed. They broke in through a bathroom window to get to him, because he hadn’t answered his calls. His face was so swollen he was unrecognizable.

Over the course of the next few weeks, the doctors induced coma and put him through 6 surgeries to go after the infection. He spent weeks in the hospital. The last I heard they were still waiting for the infection to go down enough to go after the tooth, and that was a further few weeks after his release.

I’ve tried to call him. We’ve spoken to his mother, whom we all know at work. She tells us that she passes along our thoughts and prayers to him, but no, he doesn’t want to see anybody right now. We ask that he stops by sometime, to see us. She says that he says he will. Sometime.

I have mutual friends who have run into him, about town, so I know he gets out. I know he’s recovered (or is recovering) physically. They all tell me the same thing: “he’s not the same person we knew.”

He doesn’t want to interact. To talk. To quip jokes as he does. As he did. His mother says that he suffers from a form of PTSD from the experience. Depression. Anxiety. Nightmares and stuff. It broke him.

I did some reading up on PTSD after that and learned that 80% of all sufferers are only afflicted for a short time. I’m hoping this is one of those 8 out of 10 situations. I hope my friend returns someday.

I told you earlier that I’ve only seen a doctor twice in ten years. The last time was last week. I have a clean bill of health, so far, but there are still blood tests to run, and that colon thing to do this summer when I turn 50. Who knows. I may yet be a man of perfect health. But this thing, with my friend, was a reminder, and I’ve learned a lesson.

He’s a good dozen years younger than me. He never had to go to doctors. He was smiling and happy and ready for whatever life threw his way. And then a bad tooth upended his world.

It can happen in an instant, we all know that. But when it’s happening over time, when there is something that we can do about it, our body will tell us. His body told him about his pain for months, and he ignored it. My body said nothing for decades so I’ve ignored it. But I will ignore it no more. Annual checkups. Taking heed of the pains. Exercise. Cutting back on the red meat. Less beer.

I’ll do most of those. 😉

But I beseech you, out there, do the same. Don’t let it go. Get it checked. The smallest thing can be the biggest thing. Don’t be afraid to know. The worst thing that can happen is you can find out you have something. If you do, you’ll find a way to deal with it. Steve has. He found out he had something. He’s learned to live with it. Learn from his example.

Our lives may change. Our lives will change as we get older. Guaranteed. But when we know what ails us we can have more control over that change. If we don’t, that change can upend us. Sometimes, when we are upended, we never come back.

So, that’s my health-related story. I want to thank Steve for letting me tell it. For inviting me on. I hope I’ve entertained a tad, educated a bit, and didn’t make a fool of Tom. I hope to be invited back.

Honestly, I haven’t even attacked the pharmaceutical companies yet. 😎