"SUFFER" from MS?

Is my MS so bad that I suffer from it? It has held me back at times. It has weighed on my psyche. Fatigue, heat, loss of balance, wonky eyes, tingling, moments in the restroom...those are all symptoms that I have. I prefer to think that I am learning to almost block them out. Sure, I stop every now and then and take inventory to see how I'm doing. But, for the last year, the symptoms have not worsened, and I have proven that I am still able to function in my business world. If people don't already know, and I don't tell them, they would not know that I have MS.

I know we all deal with our MS differently. I know our MS is different from individual to individual. Our support group's are all different. I live with my dog and no other family members. My nearest family is over 900 miles away. How do I do it, I ask myself sometimes. I am not debilitated, but knowing I have a disease that can be debilitating can have an emotional effect; which again, we all deal with in our own personal and individual way.

Lately, I have spent more time trying to do the things I want to do, whether I feel fatigued or not. I do them and I concentrate on overcoming the physical and emotional fatigue that I feel; mind over MS, I call it! I give myself a personal pat on the back for doing it and I feel joy and accomplishment. It takes pushing. Having the idea to do something is easy. Planning to do it, still easy. The last step; actually going through the front door out into the world to do whatever you have planned, that is the biggest hurdle for me. Over the last year, there have been many events I have planned for, only to stop at my front door when the time came. It was easy for me to blame it on the physical fatigue of MS, but really, it was the failure of my mind to win that battle.

I guess, I am writing this because I have been out reading other people's blogs and I read where someone said, "I suffer from MS." And, part of me wanted to disagree with that statement. But, I don't know that person. I don't know how bad it is for him. I don't know what kind of support he has. And, THAT is why I was out reading his blog. I need to go back and read more, and I will. Right now though, I am here writing and I want to finish. I started out writing this blog entry to say that we shouldn't be "suffering" from MS! The more I thought about it, the more I wrote, the more I knew that YES!, I "suffer" from MS. My life suffers. I let MS get the best of me. It is hard to not let it. I wish all my blog entries could be about how I beat my MS! But, that isn't true. There are many times it gets the best of me. I will have my victories, though. And, I guarantee I will be here sharing them when I get one! MIND OVER MS! I'm not ready to give up...

Well, this was a Saturday morning rambler...

LEUKEMIA DRUG TRIALS NEWS

Oklahoma tests have concluded and the Director of MS Center of Oklahoma, Dr. Gabriel Pardo, says people with MS taking the treatment had a nearly 60% less relapse rate than those on placebo pills. Okay, so that isn't a cure. (BTW, they don't name the drug being tested in the linked article, but I assume it is alemtuzumab)

Me, I would like them to figure out what causes MS, and then, let's talk about a cure. Treatment is nice, side effects aren't so nice, a cure that is something else. Just me talking, now. I think eventually they will know what causes MS and all neurological-related immune disorder diseases and the cure will be at the geno level. It won't be a pill or injection that they can give you. But I have hope and I have some time, so I keep waiting.

MORE OF FRITZ HADRON

And, why my blog is called:

"The End Of The World Will Have to Wait Until Next Year..."

Well, I really enjoyed writing as Fritz and the few who have read his blog entries have commented positively, so while the anniversary of my MS diagnosis is still fresh, I will unleash some more of Fritz. I hope you enjoy. Yes, some of the stories get a little risque, but it is all innuendo and the stories are as innocent as you want to make them. Enjoy!

Entry 3

What a way to kick off Oktoberfest or should I say, what we were calling the LHC Sausagefest! YES, the celebration BBQ was a rousing success.  The two Swiss Robinson twins were killer in drag and quite enthusiastic when the band played the chicken dance. And lab assistant Juanita Riley from the Bronx provided some fine entertainment on the main table. I think we may have experienced our first glimpse of what its like for a black hole to evaporate, if you know what I mean. Now there was some real honest to goodness elastic scattering and diffraction dissociation there, my friends. The forces of nature were colliding forming what the layman might call new hot dense states of matter that could only exist right after the big bang! Higgs bosons and supersymmetric particles were everywhere! BUT, I digress just a tad. An aside to the partygoing... Old Man Evans dropped the key to his Beamer during his ummm, protocol review with lab assistant Jones and we will have to depolarize the cryo magnets for the next week, so we can pry it loose. Yes, we can detect the smallest of subatomic particles in this rat-trap, but we can't do it overnight. Keep pushing the button my friends!

Entry 4

This isn’t going to SURPRISE anyone.  There are varying theories about what will happen here at the LHC, cutely named “Halo” by our jealous professionals at the Royal Society of Chemistry in London , but that is another story, AND we completely reject that name, by the way…friggin’ gamers. To get to my point and to make a long story short, we have been fending off this annoying lawsuit filed in Hawaii of all places. Anyways, I am really HUNGOVER from our Sausage festivities the other night and also quite puzzled why my knees are raw, my backside is sore and it smells of turbine oil, but again, that’s another story. I remember some really good times and the times I don’t remember, I think I want them to stay there. Let's just say I'm hanging up the Spam Waitress outfit back in the closet, pun intended.  What was I saying? OH YES, I am struggling to keep my mind on this Complaint for Temporary Restraining Order filed by Mr.’s Sancho and Wagner who have this fear that we may be more capable of accomplishing our goals than ANYONE and they have gone on record in the courts to say that we may be creating stranglets, micro black holes, magnetic monopoles and such. Poppycock! Let me say, IF the particle collisions we create were to convert into two massive particles with north and south magnetic monopoles that resulted in the catalytic decay of atoms and protons, AND caused them to convert other types of matter in a runaway reaction AND this resulted in the Earth’s poles reversing/flipping, all that means is that come this February, Punxsutawney Phil will not see his shadow and there WILL NOT be 6 more weeks of winter. Do I hear any applause?... yes, you are very welcome!  Where’s the harm! We can just blame it on global warming just like everyone else, and no one is the wiser!  We all know they have absolutely no scientific basis for THEIR “wacko” conclusions!  Based on that, I’m sure we can get this frivolous lawsuit dismissed.  Namaste, my friends!

WHY MY BLOG IS CALLED

The End of the World Will Have to Wait Until Next Year...

Right about the time I was being poked, biopsied, tapped, brain-scanned and having my wallet lifted for the doctor bills, that resulted in my MS diagnosis; I decided to pen some fiction using the pen-name of Fritz Hadron. I wrote this in the first-person, and as Fritz, I was a free-spirited lab physicist toiling in the tunnels of the Large Hadron Collider (LHC) located in Cern, Switzerland, on the border of France. Basically, the LHC had just fired up for it's initial start-up, but had encountered some serious issues with the huge electro-magnets that line the testing tunnels. I don't want to go all into the technical reasonings behind that, but at the time, there were a few "anti-progress zealots," I will call them, that were fearful that the LHC would be a world-destroyer when it was to finally fire-up successfully, causing a micro-blackhole, stranglet or some other runaway physics-experiment-gone-amok that would suck up all matter as we know it. So, being one of twisted humor and wit, I assumed the personality of Fritz Hadron, speaking to the masses in his blog from his underground lab 70 meters below the surface, informing readers that "the end of the world would have to wait until next year" as the repairs were made to the LHC. It was good therapy for me and the title-phrase I used stuck in my mind as a great phrase to describe my defiant attitude, masked in my own brand of wryness, towards MS. Today, September 10, 2009, one year after I was "officially" diagnosed with MS, I will share with you my first Fritz Hadron blog-entries. Here goes:

Entry 1

The LHC is broke...on the fritz. But, when we get it working again, even if a tiny black hole is formed, a big if, we promise it will evaporate immediately, we think...its in our report. Yes, we have never witnessed a black hole evaporating, but if our theory is correct there will be no fear of an incident. But, look on the bright side. If we can create a black hole, we can probably create a wormhole, too, and we will be able to escape the vacuous attraction of the black hole and humanity can colonize to other corners of the universe.

Entry 2

OK, all is not lost. In order to fix the wire that shorted out the electromagnet; a major embarrassment to us; we have to wait two months for the LHC to warm up from the previously super-cooled temperature below 2K. That's cold! To temper our disappointment, we have been officially recognized by Guiness Book of World Records for the world's largest refrigerator. This is an accomplishment that we are extraordinarily proud of and to celebrate we have scheduled a BBQ for all laboratory personnel. We are determined to not let the 10,000 tonnes of liquid nitrogen and 130 tonnes of superfluid helium (1% of the global annual production) to go to waste. Ten kegs of unfiltered Eichbaum Kellerbier have been placed in Sector 6/7. The first keg will be tapped at 1100 hours and partying will ensue. The theme for the BBQ is anything Monty Python, and that means men are allowed to dress in drag, so the complaints that we have received in the past about "too many guys, not enough women" should not come into play.Should be a good time for all! I'll be dressed as the Spam Waitress. See you in the tunnels!!!

Soul Searching

Not my own. It's fine. People with MS. I am a person with MS, living in a world without other people with MS. Now that I started a blog, purely on a whim. Just hammering away periodically, telling stories about myself, not thinking about what is next, not knowing how to do it... not really knowing MUCH, I have to tell you.

But, I'm a smart guy and I catch on quick. I quickly figured out some of the rudimentary parts of starting a blog. I delved into the inner workings of the HTML, not knowing anything about HTML, but I delved anyways and figured out how to set up the background. I customized a few things, made the blog format wider, because I know that sometimes I can write a mouthful and if the column is too narrow, well, it will require too much scrolling to read it all. Really, I did it for anyone wanting to read my stuff.

Then I figured out that not many know I am doing this. I started a counter and sure enough, the numbers have been low. So, I went out and found a few other MS blogs. I'm a friendly guy but I'm not always sure how to go about it. I was looking for others in a similar situation. Which brings up my point. I am finding that a lot of MS bloggers seem to be active for a year or maybe two and then they peter out and the entries become fewer and farther between. I wonder why. Just as I get started, others are getting out. Did I miss the wave? Is this a fad that is now on the downside? I must know the answer...

Mind Over MS and I Feel Like I Won!

I just got back yesterday from four days of self-imposed, risk-taking, thumbing-my-nose-at-MS, outdoors-in-the-unbearable-heat-of-East-Texas-in-the-summer FUN. My brother from another state came to town and we went to the deer lease; a place that provides great release for me. We were on a mission to build a deer blind and not just any blind. See, as you have most likely guessed, I am a hunter and outdoorsman...although, in reality, I prefer to call myself a wild game manager, because I spend more time making sure that the game that I hunt is well-fed and happy with their surroundings. I do this on leased property that belongs to one of the great big paper companies. Hunting and the outdoors is practically a life-style here in Texas. I am one of many that partake in this form of recreation. So, the end purpose of all this is to hunt the game and in Texas you have to do it from a blind. I had plans for a REAL blind. Read on.

Anyways, the three of us (can't forget DD the dog) started out at the airport and we were on the road for our two hour trip to the big thicket. Five hours later, after stops at two sporting goods stores, the gas station, the local BBQ and the grocery store, we rolled in to the camp...a 1950's era rundown trailer with about 4 coats of paint, which by the way, is painted camouflage. Why, I don't know. We don't hunt from the trailer. So, we quickly unpack and put the food up where the mice won't reach it, rolled out our sleeping bags and laid on top of them for some shuteye. Well, we weren't gonna crawl inside them, because the trailer has no A/C, or electricity, or running water and it was still in the neighborhood of 85 degrees at midnight. My brother was sawing wood within minutes as I stacked it.

Morning came soon enough and we were up eating our healthy cereal with soy milk breakfast and OJ. Now, the plan was ahead of us. We were there for one thing only and that was to build a new deer blind. We needed lumber, so off to town we went. We got there and to my surprise, Lowes had something special that they probably only sell in Texas; OSB sheathing with a pre-finished camouflage pattern! How could I resist and it would save a lot of time not to paint it. We loaded the trailer up and off we went.

Back at camp, we painted all the 2x4 lumber and the backside of the sheathing. Then we took the NEW chainsaw that I picked up at Lowes, hehehe, and went out to the blind site to do some clearing. We wore our asses out, I tell you. And, I have to say, I held up better than I thought I would. Plenty of water was the key. We went through almost a whole case of water between the two of us on the first day. Dinner that night was chicken drumsticks roasted over charcoal. That was followed by a shower from a 5 gallon water jug hung in our home-made shower station. Did I tell you we were roughing it just a bit? Sleep came quickly that night.

Day two, and a big country breakfast with home-fried potatoes, venison sausage, eggs over easy and OJ. We always eat good up there! First thing, we loaded most of the lumber on the trailer and hooked it on the back of the ATV. Our trail to the blind site was rough going; too rugged for the pickup truck and actually, I had my doubts about towing a trailer with the ATV, but we had to try it. I don't know how, but we did it. We made it in right up to where we could unload the lumber and build. We built the floor and the legs, upside down and then flipped it into place. That is all we accomplished this day. I left out a few details, but believe me, it was 98, humid, sweat was pouring off of us, and what we accomplished was a lot.

Meanwhile, back at camp, we had a small wild hog roasting on an open fire, slow-cooking, Texas-style!!! It was on the fire by 2:30 PM and we took it off around 8:00 PM; and, if I told you the meat was tender, falling of the bone, succulent and sweet then I wouldn't be exaggerating one bit. I'm telling you, there is nothing better! I mentioned that we always eat good up there, didn't I?

Another shower that night and another hot night lying on top of the sleeping bag praying for a cool breeze. No such luck!

Day three, the first country breakfast was so good we had to do it again...a great way to start out a day when you're going to be out in the hot sun, burning the back of your neck, pounding nails. We went to town this day and built all four walls. We were also able to get all the walls up onto the 8' high floor and tack them in. We now had a square box and it was looking like a blind; actually it was looking better, more like a small luxury, redneck condo in the woods!

Back at camp, we dined on a smorgasbord of venison sausage, cheese and crackers, left over chicken drumsticks, and cookies. In three days of the hot East Texas sun we had managed to down almost three cases of water between the two of us, well three, if you count DD, who was holding up pretty good. DD loves to patrol for mice at night, but after the first day, we were wearing her ass out too, and she was the first one on the sleeping bag each night. That dog!!!

Day four! This was our last day, and just a half one at that. Bro had to get back to the airport by 4 PM and he wanted a REAL shower before he got on it, so we had to get going, so cereal it was for breakfast...no time to be a country gourmet this morning.

At the blind, we took turns swinging the hammer, nailing the corners up on the blind. Then we set to assembling the roof. I don't think I mentioned it, but I have a style of production that involves building all the wall and roof modules on the ground and then lifting them up and assembling them in place. The roof was going to be the heaviest and most difficult lift, because it involved three metal panels fastened together and it was oversized and cumbersome. After a few setbacks, we got it put together and worked out a plan to get it up. We were going to lift it up and lean it onto the side of the blind. Then I was going to climb up the ladder, while my brother held it in a "clean" position (if you are familiar with weightlifting, this is holding it up right under his chin). Anyways, I climb up and stand on the windows and reach over the top of the walls down to the roof panels. My brother then jerks (another weightlifting term) the panel up and I grab it and using momentum, I try to keep it going and swing it up onto the roof area. Well, it was heavy and my strength was not with me, but I'm hanging onto it and yelling, "Come up and help me, I got it, I got it, I'm losing it, I'm losing it!!!" My brother made it up just in time as I was about to let go. He grabbed it and with the two of us on it, we were able to pull it up...what an accomplishment!

We got the roof on. The blind is done...except for a few nails that I have to complete on the corners where the sheathing from one wall overlaps the stud from the other wall, but I can get that later. Four days, three and one-half cases of water, one hammered finger, a tired pooch and the hell with MS later and the blind was done. Photo included above!

We made it to the airport on-time, and all showered! Thanks Bro! The help was great but the time spent together was what really meant the most to me. And to hell with the MS. It was mind over MS!

My Left Side

From that brain scan over there...and it is looking up, so that is the left side of my brain where you see the largest of my lesions...I have tried to figure out what is supposed to be happening to me. Experts have partitioned our brains, you know, tested, prodded, and made determinations about our brains of what they do and what they control and how they do it.

The left side solves problems by logically and sequentially looking at the parts of thing; the right side solves problems with hunches, looking for patterns and configuration. The left side looks at differences; the right side looks at similarities. I could go on, but this is just confusing me and making sense to me all at the same time!!! Why? Because, while each description is describing an opposite for the respective sides, to me it is describing the exact same thing, because to me, if you are consciously doing one, you subconsciously are doing the other. Maybe that is why I am a good puzzle-solver and test-taker.

So, while I think I have solved the human brain, what I am still wrestling with is how MS is effecting me and my brain, and what my brain does for me. It still does everything, just not as good as it used to. The things I notice are obvious to me. But, what am I not noticing? This intrigues me!

To be continued...

Arrgh....Why Did I Do That!

I snuck into a movie the other day. YES! That is stealing, I know that! It was spur of the moment, just feeling wild again, if that is at all possible. Please forgive me, please. Anyways, I walked in to Funny People, thinking it was just a plain comedy, the usual fare from Adam Sandler and Seth Rogen...you know, nothing that is going to cause me to think beyond boy meets girl, boy does something really dumb, boy loses girl, boy learns from the experience, boy gets girl back, and everyone goes home wondering why they paid $9.50 for the last two hours of their lives...only in my case, I'm snickering because I was duped for nothing. I was wrong!

I didn't think these guys were capable of making something that related to me in some far-fetched sort of way. But they did and they did it in a way that kept me somewhat entertained throughout. So entertained was I, that I shrugged off the building "I'VE GOT TO PEE!" feeling until it came to what might be a slow spot in the story, when I rushed out to relieve myself, all the time trying to see if I could hear what was going on through the wall while relief was being delivered. No such luck!

I said this movie related to me some how, some way and it did. Except I'm not in the habit of spoiling people with explanations of movie plots before they have seen the movie, so I can only go into so much detail. Besides the overtones of humor, the movie also deals with death and disease, ooooohhhhh!!! I know, wow! Well, it deals with it with some humor but also boils it down to the sensitivity of it at the personal level and that is where it got me.

Let's just say, I enjoyed the movie; I enjoyed the humor; I enjoyed the acting; and the unexpected depth of it surprised me. Also, it is the first time I ever cried while watching an Adam Sandler movie and who would've thought that could ever happen to them? Not me, LOL!

I Feel So Disconnected

I know...It's my own fault I feel this way! I haven't exactly been out there...you know...hobnobbing, making my presence known, speaking up for the cause, grousing to others, glad-handing, sharing my MS... I guess if I'm going to commit, I might as well just grow some, step on out and holler out to others. Sitting here tapping out thoughts to myself isn't doing it. Okay, look out MS world...here goes nothing...

I'm Doing This For The View

I’m going on a quest, a mission, a journey, a party…

The start of which is NOW! My mind is made up.

There is no turning back in the face of any impediment or hurdle.

This is all about me and anyone else that wants to tag along.

You can stay where you are, you can follow, or you can turn away.

I’m going. That much is certain. I will do this.

The peaks are waiting and my legs aren’t.

Time is but a point in space where things align.

See you at the top! I'll be the one with the "Pearl-Handled Walking Stick!"

What am I doing, really? Over the next year I am heading out to some of the highest peaks with the best views in the state of Texas. I haven't picked them all out yet, but the areas that I am eyeballing are Big Bend, Guadalupe, Presidio County, Van Horn, Davis and North Franklin. The first trip will probably be timed for September. I will keep you posted.

Are You Afraid of Relationships?

True story; I was visiting my brother and his family a week ago. They have a prayer group at their house every Sunday night for dinner, discussion, and prayer. And, apparently, all are welcome...even sinners like myself. Anyways, I was staying for the weekend, so I was the first one there and I had the opportunity to meet and greet people as they walked in.

A few were already there and the gathering was starting in the kitchen and I was conversing with a couple of others and for some reason we were talking about relationships, when all of a sudden, one woman, who I had not met yet, kind of butted into the conversation from the side...let's call her Betty. So, Betty leans in and blurts out, "You know, the word engagement has the word 'gag' in it!" There was a moment of silence in our little group. But, Betty wasn't done. She then let loose with, "And if you transposed the 'I' and 'T' in marital, you get martial!" Another second of silence. Still not done shocking us, Betty says, "I'm proud to say that I am happily single, if you haven't noticed!" Well, it was time to respond and I didn't hesitate any longer. Bear in mind, this is the first time that I am meeting any of these folks. I say back to Betty, loud enough for all to hear, "No, you're NOT! You are cynically single" When I said that I was not sure how anyone would receive my response, after all, this was prayer meeting. Luck was with me. The entire room had tuned in and when I said that, everyone burst out laughing!

I found out later, from my brother, that Betty was a rabble-rouser by nature and this was the only meeting that she was allowed to attend. Because of her demeanor and other indiscretions, which I won't go into, she has been barred from attending any of their other gatherings.

Anyways, somehow I got to talking about how I was catching an early flight out on Tuesday morning. My brother and I would be waking at 4 AM to get to the airport on time and when Betty heard that, she piped in how she gets up at 4 AM every day. I immediately puckered up, seeing visions of Betty pulling into the driveway in the darkness Tuesday morning to take me to the airport. Fear got the best of me and perhaps saved me in this case. I changed the subject before it got off the ground. "Did you know, I made the roasted potatoes we're having for dinner tonight?"

YES, I have MS

My first blog...what is the theme of my blog? Let's see. Thinking. How about ME.

YES, I have MS. But, it appears it is a milder MS than some. It is relapse/remitting, as the doc says; certainly not to be taken lightly. My symptoms are not advanced. I can see, although it was my vision that first caused me to go to the doc. My vision gets what I call 'wonky'. The eyes start wandering a bit, well, at least one of them does. And, not all the time. I also experience numbness and fatigue in my legs, but I am still active and I try to do all the things I used to do. My abilities are impaired compared to what I was like just a few years ago. Although, I am certain that I have had MS for a long time without realizing it...probably 20 years or more.

Anyways, my eyes had acted like that about a year earlier and it went away then, so not really caring for a visit to the doctor's office, I forgot all about it. Then, the next time, after a year, and I thought, 'again', maybe I need glasses. It didn't take that doc long to get on the right trail. She said I needed an MRI. That sounded serious enough that I scheduled a trip to the MRI store the next day.

A day later, I get a call and there is a suspicious lesion on the MRI and the eye-doc tells me I should see a neurologist. So, not wasting any time, next thing I know, I have a copy of my MRI and I'm looking at it at home before I see the neurologist, and it is plain to see...there is something there. Now, I have a history of cancer, having had a melanoma-positive mole about 10 years earlier. So, the immediate concern was cancer. The neurologist confirmed that, but he was not eager to dive in, it seemed, so I sought a second and third opinion.

Brain biopsy was the consensus decision, and in less than two weeks I was strapped to a state-of-the-art operating table having a hole bored into my skull and a needle inserted into the largest of the suspect lesions. The on-site pathologist saw no cancer, but did see demylenation. In the blink of an eye, my life expectancy went from six months to whenever. So, I found out that a sample of your brain will not allow a neurologist to diagnose you with MS, even though, that is what I was told it PROBABLY was.

Seems there is a torture protocol invloved in the diagnosis of MS that includes a spinal tap and my doc was intent on seeing that I didn't miss out on that. This was the longest of all the processes as it turned out...the OFFICIAL diagnosis. Multiple MRI's, counting of lesions, positive spinal tap, and finally the diagnosis. I was ready to start the treatment, but which treatment...my doc and I decided on Betaseron...then I had to wait to get APPROVED for the treatment. When it was all done, I felt like I had been INITIATED into a club or some sort of fraternity, with all of the hazing INCLUDED!

So, as I said, my MS is mild, but that is not to say it does not affect me. I think the mental and emotional toll is the worst of my symptoms. The fact that I can't run and jump like I used to can easily be written off as getting older. It was only a few years ago that I could still jump and get above a basketball rim. That is history now. One of the things I have noticed and I don't know if this is MS or if I am just a wuss. I find myself tearing up when I am watching TV, viewing a tender moment or an exciting sports victory. I watched the movie Seven Pounds, and I swear, I cried from start to finish. Took me three days to recover from that experience. I have talked to friends and family about that movie and some couldn't understand why I would cry over it. Hmmm...maybe I am a wuss...