Category: MS

Our Era of Intolerance

intolerance

I follow some of the social networking groups for people with MS, and a lot of what I read is sad, but not in the way you might think. Yes, it’s hard to read the about the plight of others who deal with physical pain, but it’s reading about those with emotional pain and scars that is especially rough.

I’m referring to the torment men and women feel about not being the kind of spouse or parent they think they should be. Then there are the single people who are alone and lonely, lamenting the bleak prospect that their disability might make them a social pariah for eternity. I’m also talking about people who lose the ability to sustain a job because their physical limitations prevent it, or their employers put so much pressure on them regarding unscheduled absences and lack of dependability that it isn’t worth the relentless emotional strain.

What I find incredibly sad, however, is reading posts from people whose friends and family question their integrity by suggesting or implying that they aren’t really sick, and that their symptoms are psychological.

Is this kind of callousness the exception or the rule? I’d like to think it is the former, but am afraid it is becoming or has become the latter.

For some of us, our disability is obvious. All you have to do is see the way we walk, or how we navigate our walkers or wheelchairs to recognize we are dealing with something that prevents us from being whole. Your senses provide proof that something is wrong, which makes our condition understandable and acceptable.

But for many, the symptoms are less obvious. You can’t see pain. You can’t see crushing fatigue. You can’t see cognitive fog. You can’t see depression or the general malaise that can emerge from constantly fighting a losing battle. These are not tangible things, so it’s easy and convenient for able-bodied people to be derisive and dismissive.

While I think it’s bullshit, I understand how people who are unrelated and unconnected to us can make those kinds of judgements. After all, we live in an intolerant age, at least in this country, where the current resident of 1600 Pennsylvania Avenue practices and promotes this kind of thinking. What I can never understand or accept is how family and supposed friends can be so unsupportive and cruel.

Perhaps these attitudes have always existed, and I was blind to them until MS opened my eyes to the plight of others. After all, people who have been living with mental illness or who are not neuro-typical have been dealing with this kind of prejudice for ages.

Still, why is it so hard for people to accept what their eyes can’t see? What makes individuals so dismissive about anyone who is less than whole, who may be odd or quirky, or who simply beats to their own drum? Why is someone who struggles with a physical or mental/emotional illness considered flawed, damaged, and therefore less of a person. Don’t we all deserve a little respect?

Is it insecurity? Do individuals feel uncomfortable or threatened by what they don’t understand? Or do people have the need to prop themselves up by tearing others down?

It’s sad to think that people are more supportive if you are stricken with something like cancer than dealing with a condition that isn’t as obvious, as easily understood, or curable. I hope I’m wrong about this, and am allowing the grim scenarios some of these posts describe to color my judgement about the world we live in. That would be ironic, because I don’t watch news programming of any kind for that very reason. The news is so negative, and paints such a bleak picture of society today, how could anyone who constantly exposes themselves to that message not be pessimistic about the future?

Maybe I should take a respite from these sites.

I was a child during the turbulent 1960’s, so I didn’t understand or feel the civil unrest that existed during that decade. After watching a recent documentary on the year of 1968, I concluded that I would have thought society was coming apart at the seams had I been an adult back then. I also would have feared for my child’s future.

I don’t think we have bottomed out to that degree yet, but it does feel like we are experiencing a renaissance of the 1960’s and heading in that direction. Our current level of social discord permeates everything, and perhaps feeds the point of views that allow people to conclude that our symptoms are all in our head, and all we have to do is stop feeling sorry for ourselves, suck it up, and get with the program. Kindness and empathy still exist, perhaps more than we think, but it is drowned out by all the other noise, and seems harder to find.

Whatever it is that is driving this mean-spiritedness, I hope it dissolves in the not so distant furture, and we all emerge relatively unscathed.

 

 

 

 

 

 

 

Tell The Scale to Shut Up

Scale

My weight didn’t vary a lot in my thirties and forties. There was a brief period of time around the turn of the century when I was consulting, which meant I lived on the road and ate out and drank more than usual, where I puffed up like a blowfish. When that gig ended and I got a job in Connecticut, I got on the scale and was aghast that I was thirty pounds heavier and exceeded two hundred pounds for the first time in my life. Around that same time, K asked how I would feel about going on a diet together, which was fortuitous timing. I lost seven pounds the first week (she lost 2 and hated me), and within three months I lost all the weight I had gained, and then some.

Since then, I have been able to maintain that weight for the most part. There might have been an occasion where my work clothes felt snugger than I liked, but I would fetch my diet crutch (WW) and get back to where I wanted to be in a reasonably short period of time.

My battle of the bulge took a different turn when MS dug it’s hooks into me. During the summer and warm weather months, I could still work in the yard and generally not sit around as much, which meant I was more active and ate less. Winter was a different story, where other than snow removal, I would come home from work, get into my sweats, plop myself in from of the television, and snack. Thus began the viscous cycle of gaining ten to fifteen pounds of winter fat, and losing most of it between April and October. Keep in mind I said most of it, which means that each year I was a little heavier than the year before.

This past winter was no different, and by the time April rolled around, buttoning my slacks and the collar of my shirts became a struggle, so back onto WW I went. The only problem is once I shed about half the amount I wanted, my clothes became comfortable again. I lost my mojo, decided that counting points and weighing food was more of a pain in the ass than it was worth, and started to wing it, which never works.

So I am currently in no-man’s land. I have not reached my weight goal, but am not invested in the process of getting there. Meanwhile the scale has become my enemy.

While K would argue this point, it isn’t that I eat badly. Other than coffee, I don’t eat breakfast, and lunch usually consists of a large Tupperware container of cut up vegetables, sunflower seeds and cheese, followed by a piece of fruit. I also don’t pig out at dinner. My problem is I like to snack at night. So it is not necessarily what I eat, but when.

Part of this struggle I’m sure is age. As the stench of 60 gets closer, my metabolism is slower, and my energy isn’t what it used to be. It’s getting to the point where since it is so hard to shed the weight and so easy to put it back on, part of me that thinks, why bother anymore? I’ve reached a stage of my life where I shouldn’t have to worry about this kind of stuff. It’s not like I have to get leaner because I’m on the prowl to find a partner in life, or want to get naked with some chickie to get my rocks off. So what if I’m a little heavier. I wear it well. All I have to do is buy some new clothes and not get huge.

If it were only that simple. First of all, I’m self conscious about the way I look, and am harsh on myself in that regard. If you saw me I am sure you would ask what the big deal was, and tell me I’m being too hard on myself. And you would be correct. The problem is I think I should have the body I had in my thirties and forties. Hey, I never said I was rationale.

Secondly, I have a hard enough time dragging this carcass around, with the MS. Having to carry excess weight makes it that much harder, so it behooves me to find a happy medium. As sedentary as I have become, I know that eating well, and maintaining a healthy weight is important for my overall health, MS not withstanding. The problem is that what medical professionals consider a healthy weight for someone my age and height is simply not going to happen.

Lastly, I am cheap when it comes to spending money on myself. The idea of buying new clothes because I don’t have the discipline to lose weight and consistently maintain it so I don’t feel like I am putting ten pounds of sugar into a five pound bag pisses me off.

So, I’m not going to say fuck it and let the weight chips fall where they may. I will try to be a good boy at night and eat healthy snacks. Perhaps I need to listen to what K has long been preaching, which is to eat more during the day so I am not as ravenous at night. I’ll also stick to water and seltzer for weeknight beverages.

I can be a real stubborn guy when I set my mind of something, so I’ll try to keep my weight within a range I can live with. I know there will be rough patches where that is easier said than done, but if those will become fewer and fewer if I follow this plan.

Meanwhile, I will continue to scream at the scale when I don’t.

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.

Zen

Bliss

Mind floats downstream

Void of thought or worry

Detached, yet acutely aware

Body, prone and uncoiled

Surrenders to gravity

Melting into itself

Light as air

Heavy as lead

Random debris

Floating in the periphery

Becomes conscious thought

Alive, vibrant and textured

Is fondled, savored, consumed

Then jettisoned

Body centered

Limbs extended

Palms flat

Floating in the stillness

The music of breathing

The one audible sound

Inhale…..exhale

Inhale…..exhale

Inhale…..exhale

Perfect stillness

Stark simplicity

No anxieties

No sadness

An empty vessel

Fortifies itself

For the new dawn

B&W Photo Challenge – Day 7

BW Final

Last day of the photo challenge. When Grace nominated me last week, my initial thought was, “Oh, great! Here’s something else I have to do.” You see, I can’t say no to Grace.  Her personality shines through in her writing: Unabashed, funny, engaging, self-effacing, free-thinking, and honest to a fault. If you ever need cheering up, check out her blog. I guarantee you there is something there that will make you laugh and, as she likes to say, smh.

The Rules: I’m not going to repeat them again. If you want to see them, refer to my last post. I think one of the rules for these things going forward should be that you don’t have to repeat them each and every time you post. Talk about a buzz kill.

So for my last great act of defiance relating to this challenge, I am going to open this up to anyone who wants to play. I’ve tried to identify people whose blogs I follow, and who haven’t been tagged by anyone else, but that isn’t possible in a seven day stretch. So Walt, Jay-Lyn, Caz, Jeannette, YouTwoHearts, the MS Lab Rat, and anyone else who I may have missed that follows this blog, have at it.

 

B&W Photo Challenge – Day 6

B&W6

 

I was nominated by Grace, blogger extraordinaire who isn’t afraid to write about anything, and who wanted to see the world through my lens.

The challenge’s rules are to post a black and white photo of something representative of your world (no people) without comment for seven consecutive days, and invite someone new each day to participate.

Today’s nominee is Alex, a fearless little dynamo who is determined to not let MS rule her world. Alex attacks life with a zeal and determination I admire. While she might like to portray a don’t screw with me persona, deep down I think she’s a softie, and I think this post on her MS with MS Alex blog proves it.

B&W Photo Challenge Day 5

BW7

I was nominated by Grace, blogger extraordinaire who isn’t afraid to write about anything, and who wanted to see the world through my lens.

The challenge’s rules are to post a black and white photo of something representative of your world (no people) without comment for seven consecutive days, and invite someone new each day to participate.

Today’s nominee is Wendi. Her blog, Simply Chronically Ill it is a mixture of prose and poetry, and her posts are meaningful, wistful, brief and direct. Check her out when you get a chance.

 

 

Oz Fest

free

When I visited the MMJ dispensary for the first time, the choices were staggering. There was stuff you could smoke, stuff you could apply topically, stuff you could inhale, drops and wafers you placed under your tongue. There were edibles ranging from cookies to gummy bears to honey. Each item had a specific THC content, presumably designed to target specific pain or anxiety levels.

After making my selection, I wandered over to the front desk to study the “menu” of items more closely, and it was like reading a foreign language. Everything was sorted by category (edibles, oils, etc.), but the actual terminology is what was so foreign. I presume that with time I’ll understand most of it, but for now I am a complete greenhorn, and wish I had asked if they had paper copies I could take home to study.

Before I arrived, the only thing I was sure about was that I was approved for 2.5 oz. of product each month. After one visit, I’ve only scratched the surface of product knowledge except for one thing: based on what I selected, 2.5 oz. is a hell of a lot of product to consume in one month.

All of the available choices, and their degrees of potency (buzz factor) made this a difficult decision. Part of me would have loved to go retro and bring an actual 2.5oz bag of agriculture home, just to see how it compares with what I remembered from back in the old days. In reality smoking the stuff was a never a consideration because it isn’t something you can do discreetly, and the aroma is unique and lingers, to say the least. The last thing I wanted to do is smoke pot in front of Shodan, or have him ask what that smell is.

Edibles and stuff that I could rub into my skin was not high on my list either. For one, it takes longer for the medicinal benefit of these products to take effect, and I could envision Shodan, who is a sneak when it comes to candy, finding a stash of gummy somethings and chowing down, so scratch that off the list. Honey didn’t appeal to me either because I thought that could get messy. Plus I know I would not want to waste a drop, and have you ever been able to get every last drop of honey out of its container?

I considered the drops that go under your tongue, but passed on that too, but don’t remember why. I gave serious consideration to a wafer type thing that dissolves under your tongue, but passed because they didn’t have a version I could take during the daylight hours (weekends only or after work) that would not impact me cognitively. The only version they had in stock had a higher THC content, which for me meant it could only be taken at night. I was also a little spooked about how strong these might be when the pharmacist suggested I start by cutting them in quarters and take them in that quantity until I was comfortable with the dosage. I can see myself revisiting this option in the future once I become more familiar with what I can tolerate, because of all the options, this is the most discreet.

My selection was the CBD oils that go into a small, cylindrical container called a “slim,” that isn’t quite the length of a number 2 pencil but is similar in width. I have two slims, one for the daylight hours (less THC) and one for night time (more THC). The containers these slims come in are marked AM and PM.

The top of each slim has a small hole in it, and, interestingly enough, the bottom of the slim shines red when you are inhaling what is inside. This process looks a lot like vaping. You place the end of the slim with the hole in it, after you remove a plastic cap of course,  into your mouth, wrap your lips tightly around it and inhale, sucking the contents into your lungs. Then you hold it for as long as you can (as least that’s what I do) before exhaling. Sometimes a little vapor emerges when you exhale, which might mean you’ve taken too much, but it is nothing like the swirling cloud you see with the electronic cigarettes. It is barely noticeable, in fact, like a fine thin mist, and it works pretty quickly.

I chose an AM and PM version because I wanted something that would address the restless leg issue and general anxiety during the day without feeling incapacitated, and something stronger at night to address the leg issue plus whatever aches and pains I am dealing with. So far it has worked like a charm.

Each container has less than half an ounce of oil in it, and the pharmacist estimated that each would provide thirty hits, which if true would last an entire month. I guess we’ll find out if the doses I give myself are correct by how soon I have to replace either slim. I did the math, and I can get three sets of these each month if I had to and still not surpass my allowance.

As far as sticker shock is concerned, there wasn’t any, which might have been the most surprising development. My out of pocket expense is higher for most of the MS meds I have and am currently taking than what I paid for both slims.

The daytime slim takes the edge off without feeling drugged. The only sensation I experience is a warm, relaxed feeling, and it definitely has calmed the leg. The nighttime version, the one with more THC, does give a body and head buzz, but it is not sloppy or heavy. I’m sure I could get supremely stoned if I took several hits instead of one, but that was never my intent.

The PM version does not impact my ability to have a conversation or function physically. Having said that, if I’m laying in bed, or watching the Red Sox on my 65 inch flat screen (headphones on, of course) on my recliner, I can really feel my body and mind completely relax. It’s almost like I’m floating on a cloud both physically and mentally. It’s quite nice!

My leg has not twitched AT ALL since I started taking the stuff. I haven’t experienced any foot or toe cramps either. Nothing prevents me from falling asleep, and I have not been waking up as often during the night. I’m asleep until the alarm beckons, and feel very fresh and rested when I get out of bed.

I believe my overall temperament has been better, but K would be a better judge of that. I feel less stressed, and am definitely in a don’t worry-be happy mode when the sun goes down.  In case you are curious, the phenomenon you might know as “the munchies” does not exist.

I’ve always believed in the medicinal value of marijuana, and my brief experience with it has strengthened that conviction. I am sure that anyone who is dealing with PTSD, high anxiety, pain of any kind or has gastrointestinal issues that qualify for its use would benefit from it. I strongly encourage anyone that lives in a state that permits this medicine for specific conditions to see their doctors, and ask them to file the paperwork necessary to get them on the program.

For now, I the only regret I have about this endeavor is that I waited so long to take the plunge.

B&W Challenge Day 3

BW3

I was invited by Grace, who I think I might start calling One in A Million Grace, given her propensity for experiencing things most of us never will (see her last spam folder post) , to participate in the challenge.

The rules are simple: post a black and white photo that does not involve people and has something to do with your life for seven days without comment. Then invite a person each day to come along for the ride.

Today’s nominee is Damn Girl, Get your Shit Together. I’m embarrassed to admit I don’t know the author’s name, but I am nominating her for two reasons. The first that a lot of what she writes is quirky and funny,  which I enjoy immensely. The other reason is that I haven’t heard or seen anything from her in almost a month.

Hey girl, are you out there?

 

B&W Challenge Day 2

BW2

The Rules: A black and white photo every day for seven days that says something about your life. No pictures of people, no explanation of the photo, and invite someone new to play along.

Yesterday I invited Bojana to participate, but in my haste did not provide the proper introduction. All you need to know about B, besides the fact she is a wonderful writer and has written about a variety of topics, is that she survived the war-torn Bosina-Kosovo nightmare of the 1990’s and emerged with her sanity intact. She has written extensively on the experience in Morality Park, and it is a gripping tale of man’s inhumanity and resilience. A must read. She also pens a blog call Bojana’s Coffee and Confessions To Go. I don’t know if B will play in the sandbox, but I’m anxious to see what she comes up with, given it’s only pictures.

Today’s victim is Superman aka Billy Mac. How do I begin to describe Superman? Funny, brutally honest, eloquent, resilient, and a hell of a writer who is a tad too hard on himself.  Billy’s blog, Superman Can’t Find a Phone Booth,  is like Forrest Gump’s box of chocolates. You never know what you’re going to get, but it will be a tasty morsel. Find out for yourself.

By the way, I am trying hard not to invite a person who has already been tabbed by someone else who is enjoying this challenge, but I am late to the game, and can’t promise that won’t happen.