Wheezing Towards the Finish Line

Wheezing

The finish line is close. I can see it clearly, as it is almost within our grasp. All that is left to do is install the floors, finish the trim around the doors and floors, install the appliances, hook everything up to the plumbing and electrical systems, finish painting, plant the grass, and lay the blacktop for the driveways. It sounds like a lot, but in the scheme of things this is short par putt. At least I’d like to think so.

I should be giddy, but the truth is I’m exhausted, more mentally than physically. In fact, I almost nodded off on the way home from work yesterday waiting for a long stop light.

I can’t speak for K, but I’d bet she’d tell you she is feeling the same way.

I am tired of being in limbo, with a foot in both places. Not only are we preparing the final touches on the new place, our current one is in compete disarray. The garage is half full with packed moving boxes and other items, and our living room has an assortment of boxes in various stages of being packed laying about. There is still cleaning and painting to do. The pace is relentless, and not feeling settled is, well, unsettling. I know the end is near, as I believe a late September/early October move is imminent, and that is part of the quandary. There is still so much to do in such a short period of time. It often feels overwhelming.

Each day is a blur. Wake up when it’s dark, go to work, come home and figure out what to eat (planning and preparing meals is more the exception than the rule), then head to the site and perform a myriad of little tasks to make things easier for the workmen and prevent unnecessary delays. One or both of us stay there until dark, then we come home, clean up, collapse for a few hours, drag ourselves to bed, and do it all over again the next day. By day’s end my mind is mush and my body is spent. I move around like a Walking Dead zombie. K’s body is sore from head to toe.

This weekend’s priority is to get everything off the floors of the new place, and trust me when I tell you there is a lot of big and little shit strewn about, much of which needs to be removed by tradesman, and get the floors cleaned, vacuumed, and otherwise prepared for the wood floors that will be put down next week.

It has literally become a seven day a week, eighteen hour a day gig, and has been this way for about a month now. You’d think the pounds would be melting from all the activity and the reduction in food intake, but you’d be wrong, so I don’t even have that perk to feel good about. The grind is relentless and tedious.

We are at the end of a what has been a grueling marathon, which is ending on an upward slope. The slope feels steep, but we need to muster a strong finishing kick. The task seems Herculean, but I know it will happen. What choice is there?

I know it will all be worth it. I know we will love the comforts and amenities of the new place, and I know that some day in the not so distant future we will look back at this with a nostalgic fondness. I also know this will all be over soon.

But it can’t happen soon enough.

 

 

 

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.

 

 

 

All Quiet on the Publishing Front

Books

2019 is turning out to an abject lesson on how hard it is to get published.

The last few months of 2018 was dedicated to putting the “package” together for prospective publishers, which included a biography, a chapter summary, a book synopsis, a competition analysis and a market analysis. I silently cursed a blue streak when those requirements were laid on me, primarily because I had no clue how to go about preparing the last two items, and because it represented unexpected work during a time when we were just breaking ground on the new house.

Perhaps established or more experienced authors have a personal assistant they can pawn this shit off to, but us rookies don’t have that luxury. So I slaved away over a period of two weeks, trying my best to emulate some examples my agent sent me. I thought the final products were pretty good for a neophyte, and emailed them to my agent along with a long list of prospective publishers she asked me to vet, and in mid-January I received a list of publishers my agent sent inquiries to.

Although I am a glass-half-full kind of guy, I wasn’t naïve enough to assume the publishers would come flocking, begging to be the ones to let my brilliant debut see the light of day. But I was confident that there would be modest interest, and that I’d have a book deal by the end of the year.

Ever since, all I have heard is the sound of crickets.

I knew that my agent wasn’t sitting around eating bon bons because K was getting some interest in her manuscript, as we both have the same agent. Nothing came to fruition, but at least she’d get the occasional email telling her who received the latest referral and what the response was.

I got zilch! Complete and utter silence.

I’d send an email every couple of months to make sure my agent was still alive and hadn’t forgotten about me, not that I really thought that. Each time she indicated she was still fishing but wasn’t getting any nibbles. This was discouraging to say the least, because I honestly thought what I wrote was pretty good, and that somebody would want to take a peek. The last time I reached out she indicated summer is traditionally a very slow period, and she’d make another concerted push come fall if nothing turned up in the interim.

By now I had resigned myself to the reality that this wasn’t going to happen. For whatever reasons, what we had wasn’t enticing enough to generate anyone’s interest and ask for more. Part of me wasn’t displeased because I assumed once that happened, more work would be required of me, and that I’d have to start writing another manuscript if I became published. This would require time I did not have, with the ongoing house construction and subsequent move.

So I didn’t obsess over the lack of interest. Yes, it would have been a nice ego boost, and who couldn’t use a little extra income from book sales, given the cost overruns with the house. But honestly, I’m so fried from getting this house finished that I stopped caring about anything else. If it happened, great! If not, well, it was worth a try. I’ve got more important things to worry about, and I’d happily go back to regular blogging once the move was completed and we were finally settled in  the new place.

Then, out of the blue, I received an email late last week from my agent who informed me that one of the founders of a New York publishing house asked to see the manuscript, not just the first few pages, and my agent emailed the entire manuscript in addition to all that other stuff I had to prepare last year. I was assured this was a “BIG DEAL.” Shortly after that, an editor from another place in Toronto expressed interest and received the same package. Just this morning, she let me know a third publisher, a large New York firm whose stable of authors includes, or had included at one time, James Patterson and David Baldacci, Nicholas Sparks and John Grisham, is reading the manuscript.

I’m told they all good possibilities.

Am I doing cartwheels? No. I am cautiously optimistic though. I figure the more eyes that see it increase the odds that someone will want to take a chance on an unknown like me. It’s nice to know my work isn’t going to wither on the vine, and that some unbiased, professional people will read my work. Regardless of whether they want to take it on or not, I’ll get some valuable feedback. If I’m not for them, perhaps they might refer it to a colleague who they believe might be interested, and the action that I believed would happen early in the year might finally happen.

Who knows, maybe I’ll get lucky. Wouldn’t that be a nice housewarming present?

Random Thoughts

THinking

A few thoughts that have filtered through the frontal lobe as the monotonous grind of house building slogs along:

Age had always been an irrelevant number to me, but the longer you are upright and breathing, the more it seems that events conspire to make you think about your age. For instance, ever since I hit sixty I have noticed more people my age, and even younger, in the obituaries. How can you not think of getting older after noticing how often members of your age group are taking the dirt nap? It’s a chicken or the egg thing. Has it always been that way, or am I noticing it more because I’ve started to pay attention to the obituaries?

Your body also has a nasty way of reminding you how old you are. My teeth never bothered me until recently. I have to pee more frequently than ever before, and it isn’t because of the MS (that’s a separate issue, one of which requires me to wear pads). Age spots are beginning to appear, my hair gets greyer/whiter by the month, and is thinning to such a degree that I need to wear a baseball cap every time I go outside otherwise various parts my head will burn.

Physically, my once taut bod is starting to sag. I suspect women lament the day when their boobs start to drift south, but that also happens with men. When our pecs lose their tone, man-boobs are the often the result. I’m not there yet, primarily because of all the work on the new house. But I can see them getting to that point. Yuck!

Be that as it may, I mistakenly thought men got off relatively easy on the sagging front. That changed when I noticed that the sack that keep the boys close to my body has begun to sag in a similar fashion. This may not seem like a big deal, but I like to lounge in sweat shorts or sweat pants in commando fashion when I am at home during the evening. With a sack that sags and swings, the act of sitting down, primarily because that process can be clumsy, compliments of the MS, and sometimes results in them getting pinched between my legs, or they hit the surface I’m am trying to sit on with some force before the buttocks can cushion the blow. It’s like shock therapy that sends currents of pain reverberating down one’s legs, and it is yet another thing I have to pay attention to. Hey Tom! See what you have to look forward to?

Speaking of aging, is it my imagination, or do fat cells tend to gather in men’s stomachs and in women’s hips and butt as they get older? I’ve observed men I haven’t seen in a while with guts protruding over and beyond their beltlines, and women whose bottoms look like they are significantly larger and wider.

How come a women’s purse is as big as a duffle bag, and men’s wallets are the size of an index card?

And while we are on that line of questioning, why do women bring their purse and as many as three other bags to work while men only need a wallet?

From the Men Are From Mars and Women are from Venus line of thought: Most men I know, yours truly included, can get a call from a good friend they haven’t spoken to in months and the conversation lasts fifteen to twenty minutes. Women get on the phone with a girlfriend they spoke to within the last several days, perhaps even yesterday, and talk for over an hour. Why is that?

I remember Connecticut weather being very predictable when I was a kid. Each season was what is was supposed to be: cold snowy winters, warm and sometimes hot summers. Spring started cool and gradually got warmer as summer approached, and the exact opposite happened as Autumn morphed into Winter. Now? This winter was temperate with little snow. Spring was wet and cold, and this summer has been ghastly hot and humid. We just had the hottest July on record. Who knows what the fall will bring. Two years ago we were in a drought situation where water rationing was being seriously considered, then we made up for it in less than six months. Call it what you will: global warming, climate change, whatever. Something is going on, and if the powers that be don’t do something to attempt to remedy the situation, the our planet will take care of itself in the form of another Ice Age or something similarly catastrophic. It won’t happen in my lifetime, but perhaps my inland Connecticut home will become ocean-front property in my son’s lifetime.

The only good thing about the Red Sox free-fall is that I won’t have any distractions when it comes time to move.

And speaking of the Sox and teams in general, if a team has such an extraordinary year like they did last year, then follow that with an unexpectedly bad season, which year was the fluke?

I’m dreading the 2020 election cycle. It’s going to be long, tedious, nasty, cringe-worthy and supremely depressing, especially if the outcome doesn’t change the current status quo. I wish I could sleep through it all and wake up on election day. Then I’d have the option of being optimistic or going back to sleep for another four years.

As I have gotten older, I have become more and more like my father. I react like him about many things. I worry about the same things he did (and didn’t), I hear his words leave my lips and I look more and more like him. It’s taught me that no matter how much we swear we will  never be like our parents, we turn into one of their clones.  In my case, assuming it’s true, I hope the health and longevity he enjoyed is part of the package. That might be too much to expect with a disease like MS, but one can always hope.

If any of you decide to build a house, be warned. You become consumed by the process at some point in time, and lose all sense of time and perspective during the process. Nothing ever goes according to plan, it costs a lot more than it was supposed to, and as you get towards the end of the process you wonder why the hell you decided on such a foolish venture. Then you move, are established in the new place, and wonder what all the fuss and angst was about.  I’m still in the why the hell portion of this journey. As much as I enjoy summer, I can’t wait for it to be over because we’ll be in the new place, will have sold (hopefully) the old place, and I will feel settled for the first time in almost a year.

 

 

 

 

 

 

 

 

Walking Into A Furnace

HOT

Oh my God was it hot last weekend! I’m not talking about above average New England temperatures either. I’m referring to heat and humidity that felt biblical, made you wilt, and made you feel like your body was melting.

The talking heads warned us it was coming, and for once they got it right. Warnings of dangerous heat and humidity plastered the airwaves on Tuesday, and they amped up the volume during the subsequent days.  Friday came and, as predicted, the heat steadily grew throughout the day, but that was simply a dress rehearsal for what came next.

When I went outside early Saturday morning to check the pool chemicals my body felt like it was shrouded in a hot, moist shroud, and this was at 7:30! It seemed like every pore in my body started leaking, and I’m not the type of person who perspires at the drop of a hat.

Under normal circumstances, the weather would make any sane person stay indoors and do as little as possible until the heat broke, but with an imminent move on the horizon as progress on the new house rolls on, sanity took a back seat.

To give you an idea of how oppressively hot it was, the heat index was around 115 Saturday. I don’t think it was quite as humid on Sunday, but we’re splitting hairs, and as we returned home from the job site at 8pm Sunday evening, the outdoor temperature was 87 degrees. Are you kidding me?!

What is it about oppressive heat and home construction? When we built our first house in 1997, we lived in Southern Indiana (Evansville), which by far is the hottest place I have ever endured. Completely landlocked in the southern tier of the country, the heat had nowhere it go. Temperatures were routinely in the 80s and 90 with humidity to match, and it was hotter at 7pm than it was at 3pm.

How hot was Evansville? One day in July I took a day off to help clean up the construction site. Arriving there at 7:30 in the morning, I brought three gallons of Gatorade with me to consume so I wouldn’t cramp up or pass out. Between the time I arrived and 2:30 in the afternoon, when it simply became too hot to continue, I had consumed all of the Gatorade and peed only once during those seven hours. My clothes looked like I showered in them, and the dust from the site had caked onto my exposed skin.

That is what was last weekend was like. It felt like walking into and living inside a roaring furnace that got hotter as the day got longer.

Of course, I was 23 three years younger back then and didn’t have MS, and I still felt miserable that evening. I wasn’t foolish enough to push myself like that this past weekend, but I know I was still outside more than I should have been.

On Saturday, we helped my nephew remove and pack some furniture, file cabinets and tools that we no longer needed into a large van, then organized the garage a little to create more room to maneuver given the new open space. The pool was a godsend, and I jumped into that sucker a number of times during the day. Perhaps that is why the heat’s full effect didn’t arrive until later that evening,  when a wave of fatigue I hadn’t experienced in a long time consumed me.

Knowing I  over-exerted myself, Sunday was going to be a day spent inside. That lasted until early afternoon, as one can only stay cooped up for so long. Cabin fever compelled me to put on the swim trunks, open the deck umbrella, and take turns reading and jumping into the pool to cool off. Cooling is a relative term, because the water temperature was 90, having increased three degrees in less than twenty four hours. Still, it was blissful by comparison. Any relief the pool offered was short-lived, however, because within five minutes of leaving the pool, not having bothered to dry off, I’d erupt in more perspiration. Within ten minutes I’d once again feel like I was baking from the inside out, so back into the pool I’d go. This routine lasted for maybe an hour an a half, when the process became more annoying than refreshing.

Unfortunately, one task to do at the construction site remained. A Chickadee had decided several weeks prior to build a nest in what turned out to be an ingeniously difficult spot to get to in the corner of the garage.  For weeks, we’d hear the chirps of baby birds asking for their momma, and watch her dutifully fly in an out of their lair to feed and attend to them. As the sheetrock went up, nobody wanted to touch them, and we certainly didn’t want to entomb them. Assuming it would not be long until they flew the coop, we left that part of the garage open.

Well, it turned out last weekend was the time the coop was flown, either because they were full grown or it was too hot to stay put. I wanted leave the nest where it was and sheetrock over the remaining open space, but was vetoed by K. So we brought a ladder to the site after seven, and up I climbed to see if I could exhume the damn thing.

This nest was tucked between two 2x4s, and the entrance to it was a sliver of a triangle, at least eleven feet up in the rafters. I gingerly made it up each rung while K dutifully held the ladder. I had some long, heavy duty tweezers, and methodically pulled pieces of the nest out of its shelter.

It was hot and nasty up there. The air was still, heavy and dense. I’m not sure how long it took, but after removing what I felt was almost three-quarters of the thing, pulling out a variety of twigs, straw and plastic with each tweezer-grab, I had to stop because I was getting light-headed and started to feel a little queasy. Getting down the ladder was hard. K had to help by literally grabbing the ankle of my bad leg and guiding it to the next step down. Once I landed on terra firma my legs felt like jelly and my body felt like a limp dishrag. Remember, the air temp was 87 at the time, but it had to be at least another five to ten degrees hotter up in those rafters.

I shuffled over to the car, not able to lift either foot off the ground, shed my sodden clothes once we arrived home, slowly and carefully made my way upstairs to take a cool shower, then collapsed onto the bed, where I didn’t move for two hours. I felt a lot better after that, and was able to use my legs again.

I was a little surprised at how my body reacted because I actually did more physical work the previous day in higher heat and humidity, but suspect this reaction was more of an accumulation of the weekend’s events. I pushed myself to see how far I could go and what I could endure.

I wasn’t sure what Monday morning would bring, but it wasn’t any more difficult than a typical morning, so the heat’s impact didn’t linger into the next day. I could sit here and vow to never do that again, but that would be a lie. Stuff has got to get done if we want to move before Labor Day, so while I will try to be smart about my approach, I know the limits will once again be pushed if the situation calls for it.

Hopefully we won’t have a repeat of this past weekend’s oppressive heat. Storms rolled through the area on Monday and into Tuesday to wring all the moisture out of the air. Temps will revert to the upper 80s and low 90’s over the next ten days, which is hot by Connecticut standards, but sounds like Nirvana compared to what just occurred. It actually feels pleasant outside today by comparison.

It would be nice if last weekend turned out to be the worst this summer has to offer but I’m not banking on the idea that we aren’t going to experience another round of excessive heat.

That would be too convenient.

 

It’s Getting There

Last pic

Daze

A brief update as I climb back into the saddle

It was good to take a step back for a few weeks and recharge the writing batteries. The break provided me with time to look forward to getting behind the keyboard once again, not to mention provide time to let my mind wander and come up with a host of ideas and subject matters.

Having said that, the new house has become an all-consuming monolith that dominates my daily life. I took week off to start getting our current house in shape for the market in addition to helping out at the job site.

This process is taking a lot longer than we hoped or expected. The first house we build in 1997 took about seven months to complete. Our current home took less than six. We assumed this project would be no different, however we are currently into our ninth month of work. There are a number of reason for this, which I might elaborate upon in the future, but we truly expected to be moving in any day now when we initially broke ground. Instead, the sheetrock will be completely up and taped by week’s end.

The pace of our progress picked up when K took control of the project several weeks ago, and I suspect that will continue on the remaining items that need to be done: painting, the finish carpentry, the cabinet and fixture installation, the lighting, the flooring, the garage, the final excavation and grading of the site,  installing the driveway and seeding the lawn. There may be a few tiny things I’ve missed but those are the biggies.

The biggest fly in the ointment right now is the excavating. The individual we hired is now doing this part time, his hired help is gone, and the laundry list of items that need completion are long. We have sniffed around to see if there are other contractors that can pick up some of the slack, but so far have been unsuccessful in our search as they are all booked with other projects. If we do find someone, I am sure they won’t be cheap, and this project is already way, WAY over budget.

Then there is the stuff needed to get our current house ready for sale. That list is almost as long as the one needed to finish the new place, which was the motivation behind taking last week off.

The pressure to get this all done is immense because we want to be get the house on the market while the weather is still nice. We initially believed everything would be settled before the end of August, and that the financial piece of this odyssey (selling our house, settling our accounts and depositing some funds instead of constantly drawing from them) would soon be over and we would begin enjoying the new homestead, the move a painful memory. Instead, our goal has morphed into moving by late August/early September, which is not ideal because the goals was to get the house sold before all the kiddos go back to school. That is a pipe dream now. Our original timeline allowed us to fix up the old place once we were moved and it was emptied. Instead it is more likely that we have to do this and put it up for sale while we live there. That means we have to work on both places simultaneously. Maybe that is for the best because I have read is it always better to sell a house when your are still living in it rather than when it is empty., but it does complicate things exponentially.

Our heads are swimming with all the stuff that needs to be done, and how to deploy our dwindling resources. I don’t remember the process being as stressful as this one has turned out to be, perhaps because we are financing most of this, but it is what it is. I forgot, but now vaguely remember, everything coming to a head towards the end of the process, where you feel like the tail is wagging the dog.

Meanwhile, it is soooooooooooooooo freaking HOT! I picked the hottest week of the year so far when took last week off. Temps were in the 90’s with high humidity all week long, and I felt as if I were melting. As you know, MS and heat are not a good match, but I plowed through it for eight to nine hours each day, drank a ton of water, then jumped into the pool to cool down when we called it a day. My body was thoroughly shot by evening, and I shuffled around the house like Frankenstein. Crawling into bed felt like heaven, but by morning I was so stiff it took a while  to get loose enough to get back at it.

Nonetheless, I survived and in some ways thrived. It was good for the ego to learn that I’m still fairly useful, even though it takes a lot longer to do things compared to the pre-MS days. But at least I still can. My balance and leg strength seems to be a little worse than before. I can’t tell if this is real or imagined, but it feels like it is more difficult to get around under controlled conditions. Then again, that disappears when I get to the job site. Maybe it is the motivation or adrenaline to get things done. Maybe it is all in my head. I guess we’ll find out when the move is actually complete and we can finally exhale.

Mother nature isn’t going to relent, unfortunately.. The heat index is going to be in the 105-110 range this weekend. It is going to remain hot next week, and many are predicting this will be the hottest summer in recent memory. That’s par for the course. We’ll have to be smart about working in that environment.

So as I climb back in front of the keyboard, I don’t know if this will be an every week thing again or whenever I have the time. I am sure you will read more about our progress in the short term, as it is the easiest and quickest thing to write about. Completing the house and actually moving has become an obsession, time is limited, and this will be a good outlet to vent. However, I’ve had a few epiphanies during my hiatus that I want to share, and will eventually get to them.

One before and after pic opened this post. Here are a few more to give you a sense on how far we have come. At times both K and I feel like we are running on fumes, only to get to what by now must be our fourth or fifth wind. In the scheme of things we are in a final sprint on the home stretch, but it feels like it will take forever to finally reach the finish line.

Pic7

Pic1

Pic8

 

Pic9

Pic12

Pic3

Pic4

Pic6

Another Recognition

DIsability

Kim from I Tripped Over A Stone is keeping me busy, bestowing me the honor of the Disability Award. They say that plagiarism is the sincerest form of flattery, so I will mimic what Kim mentioned in her piece, and refer to this as the disAbility Award. I’d much rather focus on the positive than the negative, and  view being saddled with Multiple Sclerosis as a bump in the road instead of letting it define me.

Part of the deal is to respond to ten questions Kim asked, and pass the gauntlet to other bloggers who live with disabilities. Many of the bloggers I know who fit that description have already been nominated, so I will pass on that one. Onto the questions:

What were the first symptoms you experienced?   I was on my treadmill and my leg literally stopped working. I couldn’t bend my knee, lift it, or control it whatsoever. It dangled like an overcooked strand of spaghetti, and I practically had to fall off the treadmill onto a nearby couch before I really injured myself. It was a surreal experience and freaky as hell. The symptoms disappeared completely shortly thereafter, and my mind was racing. I knew something very wrong had occurred, but could not fathom what it was. After the symptoms vanished, I didn’t tell a soul. After all, how could I possibly explain what just transpired? No physician could assess it without actually seeing it in action, so I decided to bury the incident. I ignored it, hoping and half-believing that it would never happen again. We know how that turned out.

Name one good thing that has come from of your chronic illness. Perspective. I don’t sweat the small stuff anymore, and have a greater appreciation for everything that is good in my life.

What is the one thing that is believed to be accurate about your condition that isn’t? That is s tough one. MS is known as the snowflake disease because it affects everyone who suffers from it differently. Our combination of symptoms is as unique as our fingerprints, so I honestly can’t think of anything. If anyone who reads this can come up with something, please feel free to chime in.

What is the worse symptom you have to deal with? There are a number of them, but the worst has to be balance, or lack of it. I use a cane all the time, more for balance than anything else, although walking is not easy. But my balance is so bad that I can turn an ankle or fall down by just leaning in the wrong direction. I’m toast if I lose my center of gravity. Most folks would assume chronic pain would be number one on this list, but I fortunately have avoided that bugger for now. Hopefully it stays that way.

What advice would you give to someone who is newly diagnosed? Get a good neurologist who specializes in MS. Read as much as you can about the disease so you know what you might be dealing with. Be proactive in your treatment, and don’t be afraid to try anything. If you have the primary progressive variety of MS like me, remember that nothing you try will improve your symptoms over a long period of time or make them go away. The name of the game is to keep things stable and minimize or delay the pace and spread of the progression. I have been successful (so far) in that endeavor.  The symptoms have certainly progressed within my leg, but they still remain confined to that single limb after eleven years.

What is the one thing you miss doing before you were diagnosed? Going on long walks with my wife.

What is the one thing that helps you the most with your symptoms? Medical marijuana. If you want to read more about that, look here, here, here, and here.

Do you find the word disability offensive? Not in the least, primarily because it is a fact. I have a disability. Besides, disability is a hell of a lot better than handicapped. I despise that word.

Since your illness, what is the most important lesson you have learned about yourself? Although I have always felt this way, dealing with this disease has proven that I am a resilient, stubborn, tough (in a good way) upbeat, and half-glass-full kind of guy.

Do you celebrate the 4th of July? Of course! Besides, that also happens to be my mother-in-law’s birthday, and she lives with us.

Thanks again Kim. I am glad that we are part of each other’s respective tribes.