A humbling experience...

I asked my wife on Friday morning what she had planned for the weekend. I hate to plan ahead and find out that she had plans to do something other than what I had in mind. Also I am forgetful. She told me that she wanted to take me out to dinner for my birthday that had just screamed by. Not a pleasurable event, like when you're a kid. So I guess I deemed it as a marker to inform the world that I had made it through another year, woo hoo!

I thought it would be nice to go out on Saturday night, since it's been awhile for us. The night came, and I had to pick a place to go. We like the food at "Texas Roadhouse", so off we went. Of course it was packed, like anywhere around the Dallas area on weekends, all food venues are really busy. We signed in, and had a 20 to 30 minute wait. I was relaxed and not in a rush, and enjoyed the crowd around us, which I normally don't like. Lately I have slowed down and like watching people to see what I can surmise of their little blurbs of conversations or expressions. In no time, they called us and we were promptly seated. The meal was great, and now we were sitting there having a goofy conversation, trying to wonder how we became so stuffed.

Now out of nowhere, came a crew of waitresses, and waiters sliding up a saddle on legs, and were grinning at me like a crew of bird fed cats! I thought they had been smoking some Ganja or shooting some Jack Daniels shots in the Kitchen between plates, when it dawned on me, my wife put them up to this! Our waiter was grinning at me, as he sprawled out in a slight Texas accent, "were here to celebrate yore Birthday, so come on out here and sit on this saddle"! My reaction was unexpected as I told them that I wasn't going to do it! I cannot pick up my leg over that saddle I blurbed out, explaining that my leg doesn't work very good. Well that didn't fly as one of the girls said, " Ok then sit side saddle"! I glance around and see a lot of strangers looking at me and thought, this is drawing way too much attention for my liking. Now what did that girl say "SIDE SADDLE"!!! That will never happen, and in an instant I changed from Stumpy to John Wayne!!! Ta dah...

Now you have to imagine that I had to physically had to lift my leg to get into the booth, and now I was going to have to gracefully try to get out without looking like a klutz. So it takes three tries as I have to lift my leg with my hands and scoot it over to the aisle to exit the booth. Now it sort of gets quiet, maybe at first they thought I was just bashful and shy with the "I can't do the saddle" excuse. Now I am really feeling watched. So to counter the awkwardness of the moment, I finally stand up and ask the waiter to step aside, telling him that if I could be on the other side, I could flip my good leg over the saddle for them. He moves out of the way and gives me room to move around to the opposite side. I look at the people across the aisle from our table, and ask them to excuse all of the ruckus, I'll be doggoned if they aren't grinning more than the saddle crew! Now as I climb on, everyone is now laughing again as they give me a rolled up cloth napkin, telling me that they are going to announce my birthday to everyone, and when they were done, I had to swirl the napkin over my head and let loose with a "Yee Haw"! So they announce it loud and crazy like, and when it comes time for me to swirl and yell, I started swirling that napkin over my head and let out one big Texas style "Yeeeeee - Haaaawwww"!

I'll have to admit that it was fun, and I guess I owed it to my wife to be a good sport, she was a good sport when a similar event happened to her... as I whistle and look around in an innocent fashion.

It was my first real awkward moment in public, and I lived through it. I found out that you can either draw more attention to yourself being fussy, or go with the flow and help out the whole situation. Flowing seemed like a good choice at the time. As I go along I find out what my limits are, and I'm sure that for worse or better it will happen again, but I'm better prepared for it now.

Dreaded side effect syndrome...

It all started when I was a young lad. Medicine to make us better, had unforeseen down sides. Remember Cod Liver Oil? It was supposed to cure what ailed us, but made us shiver at the thought of seeing that bottle in mom's hand, and a tablespoon in the other. Then it was the joyful "Malaria pill" that we were forced to swallow every Tuesday, when I vacationed in South East Asia. Yep, the Sargent's stood over you like mom did, and watched you swallow the orange tablet with some liquid to insure that you didn't hide it in your mouth. So for the next few days, that pill made you reserve a spot in the latrine (Outhouse - Yes, war is hell...) with some good reading materials.

Later it was the "Sotalol" that was prescribed to me when I suddenly developed Atrial Fibrillation, which is an Irregular Heartbeat. This led to the discovery of a birth defect called a Patent foramen ovale (Hole in the Heart) and the fear of this drugs first line warning: "However, unlike many other medications, sotalol can often cause life-threatening side effects". So much for that, which leads me to this episodes story...

I believe that anyone who takes a DMD, or as the majority are better known "CRAB" drugs, have their fears of well published, documented, and highly discussed SIDE EFFECTS! I mean that after you are DX'ed with a debilitating disease, you then are subjected to picking a drug that has several serious side effects from death, to flu like symptoms, and the dreaded IPIR! (Where's mom with the Cod liver oil when you need her!)

So for MS medications, let's run them down with a brief overview of warnings for each one:

TYSABRI - Increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML). PML usually happens in people with weakened immune systems.

Rebif/Avonex/Betaseron - Flu-Like Symptoms: The most important side effect is the flu-like symptoms, which are experienced by about 69%/60%/76% of patients. These include: fever, chills, sweating, muscle aches and fatigue,but not nausea or stomach upset.

Copaxone - Acute Panic-Type Attacks or the dreaded IPIR (Immediate Post Injection Reaction): These are a pretty rare side effect of Copaxone, but can be pretty scary. These reactions involve flushing, chest pain, heart palpitations, anxiety, constriction of the throat and/or trouble breathing. These symptoms happen within minutes of an injection, last about 15 minutes, and go away by themselves. They happen in about 10% of patients at least once, usually after several months of being on treatment.


Well wasn't that a delightful set of warnings? Now I have a joyful set of circumstances to look out for, don't you agree? Weighing out the side effects, how many times a week that the needle had to be administered, and the results of clinical studies. I finally decided that the Copaxone drug was for me! You just can't run away from the thoughts of the side effects happening. Now it's a waiting game, to see if the drug will work, and when will my first IPIR experience happen.

Isn't life grand! And no, they are not the Golden Years...

My Drug of Choice...

Sometimes as I sit alone pondering over the medical maladies that have plagued me over the past 8 years. I have came to the conclusion that I have endured each medical revelation by using the tried and true method of keeping a positive attitude. This does not mean that I haven't had mood swings that range from pure elation (rare) to down in the dump days (also rare), as most are just another day. By only taking one day at a time, do I keep the playing field on level ground. No expectations,just glad to weather another day without any major mishaps.

As a little tot growing up on the south side of Chi-Town, I developed a love of music. So much that some call it an obsession. I have veered away from the "Normal" lifestyle of TV brain washing, ever increasing commercials, and reality mania. I would rather be in front of my computer with music playing in the background, as I entertain myself with what ever the subject of the evening turns out to be. The music that I listen to ranges from Jazz to Outlaw Country, to all types of rock, followed up by Oldies, Blues, R&B, Funk and Soul, topped off with some tunes sang by the Rat Pack smoothly crooning out some dated melodies. I guess you could call music my drug of choice. Even though my body is slowly checking out, my mind is still active, and I plan a good fight to keep it that way.

Music is the one thing that makes me forget the day, relaxes my tensions, stimulates my senses, and fosters images of times past and present. No matter how I feel, there is music to make me feel good. I fashion myself to be a loner, and feel like an alien, having only met a few people in my lifetime, that really get it. It's the universal language, which crosses all time and space, regardless of it's origins, music is my muse of poetic lyrics and myths.

MS is a terrible affliction, and seems for no sensible rhyme or reason, to infect the human race with pain and suffering. Only those who experience it, can truly understand it's devastation in mental and physical abilities. So MS you have already plagued my body, and probably starting to play tricks on my mind, but as long as I have my muse at my side, you can never have my soul...

Eyes wide shut...

The last year has been a chore. Moving to another state, and having to find new doctors was a trying feat. Who to pick, what was I to expect, would they be good doctors, and could I relate to them, were the questions that raced through my thoughts. I found it stressful and tiring. I like to do my research through the Internet, it is the best medium and affords one with countless information. Of course it can be full of garbage also. One has to pick and choose their sources carefully.

My personal doctor is a nice fellow, laid back and younger than I am used to. After our chat about my history and medical records, I inform him that I am proactive in my health and use the Internet every day to keep tabs of current events and have done a lot of research on the medical problems that I have. Right away it was like he went into a self defense mode, warning me of the evils and uncertainty of self research and diagnosis! I assured him that I was an intelligent lad, and knew the evils of the Internet and chose my resources carefully. This same scenario happened with my Cardiologist and Neurologist, it seemed like it all came out of the Doctors hand book on "Patient Psychology".

Now I sure the Internet has it's problems for the medical industry, but I found it amusing, all three doctors reacted similarly to this revelation. I think all three doctors are doing there jobs and have confidence in there abilities, or I would walked away if I thought they were not up to the job. My PCP encouraged me to brave the claustrophobic Tunnel of MRI Evil. When he saw that the MRI that he requested didn't show him what he thought might be the problem. He then re-examined me to finally reveal that I had Babinski's reflex, and drop foot. At this time he referred me to A Neuro who encouraged me to continue the MRI's to rule out, or find the cause of my leg malfunction. So we progressed to the brain and bingo, lesions! Of course it led to a Lumbar puncture, which verified what the Neuro expected, MS. I have noticed cognitive slow down, some minor speech difficulties, and the keyboard has been a tattle tale indicator of my progression. It finally sank in, I am impaired. I think human nature leads many of us to self denial, and we have to decide for ourselves that the doctors are right. There are many other signs to be noticed, if we know where to look.

I was glad to have a DX, for now I knew which way to go, or at least where I might be heading. Many are not that lucky, and are held in a Limbo land of medical indecision. Now I could at least take a path of treatment, to maintain the level that I am at now. Only the future will show if it was the correct path, that I chose.

Hiatius is over...

Well I guess it's time to return to work. I hated letting this blog go dead, but now after much reflection, I truly feel that I can post with some knowledge about the situation that has brought me to this spot.

Finally after much debate with myself on DMD's, and the sticker shock from the cost passed on to those who suffer with MS, I came to the only conclusion that made sense. It's time to start on Copaxone. With some wrangling of our medical plan, it fell into place that my wife could have her own insurance. through her new place of employment saving us many dollars. My employer pays for the employee's Insurance, also offering a buy up plan that I purchased, since it would lower my out of pocket and deductible expenses. So we felt it would now be manageable to proceed with the DMD therapy.

It's not bad enough that you find out that you life is changing drastically, but to add insult to injury, it seems they are trying to send you to the poor house, just trying to save yourself from becoming incapacitated and totally dependent on others. I know they say that it cost's a lot of money for research and development, but when you look at total profits from most drug companies, I just have to shake my head. Makes you wonder if it's really in their best interest to cure any disease? I know that sound's cynical, but there is a lot more money treating ailments, than curing them. Mama always said that the green stuff was the "Root of all Evil", and I'm not going to dispute Mama, I tried that a long time ago and... enough said!

I did not start this blog to cry on any one's shoulder, but to make others aware of one's personal view of life behind bars with one of the most misunderstood disease's in our time of advanced medical history. Also I want to reflect on the people and friends that I have made, and the one's that I have yet to meet. I plan to keep an upbeat view on my life, as I feel there is no sense in beating myself down with the cards that have been dealt. Life is a card game, and it has winning and losing sides, the odds will always catch up with you sooner or later. Although some have better luck than others. Staying a Professional is what I am trying to achieve...

Perspective

Since being Dx'ed I have taken time to reflect on how MS effects it's unwilling participants. Scattered is the term I will use. Everyone is different, symptoms, lesions,disabilities, pain level if any, range from none to the extreme. At the present time there are four levels of MS, which can be a sticking point of progression and treatment therapies.

Doctors classifications verses Insurance companies acceptance of allowable coverage, and co pays that stifle the common humans ability to wonder what humanity is all about. It seems that everyone is concerned about your health, just as long as you can pay! I understand R&D, money spent to develop drugs, but the profits of Drug Companies say otherwise, your sickness is their benefit.

As of my Dx, I am fortunate to be able to walk and drive, with a longstanding problem with my right leg and it's abilities to function properly. Drop foot doesn't help and I have become accustomed to stumbling, and as they say "bouncing off of walls", I expect this is due to an ever changing gait, as each day the leg acts differently in strength, and coordination. I have other Sx's, but they are mild compared to many who are affected by MS.

I have yet decided on a medication if any, as I am waiting to see my Cardiologist and discuss the drug therapy I am considering, which could affect another health deformity I am plagued with. I am commonly known in the heart community as an "Afibber". That's a short name of Atrial Fibrillation, and is triggered by several means and highly contested as to what those triggers are. Afib is an irregular heart beat and I am known as a "Lone Affiber" which means that my heart always returns back to normal sinus rhythm on it's own, without drugs or electrocardioversion.

Progression of my illness is unknown. No new lesions as of March. Drug therapy to be determined as soon as possible, but the state of an uncertain economy, and reactions to those therapies, could determine what happens in the near future. I am prepared for an uncertain future, as much as one can be in this circumstance. I was always concerned with the Afib, and now things have changed. I have always been flexible and have adjusted well to life's changes, and the test has just been elevated to a new level...

The War rages on...

The first thing that I did when I received the news about my positive dx, was to start searching the Internet for information. I am a geek when it comes to computer related functions. Self proclaimed Google and Wiki fanatic. If it's there, I have convinced myself that I can find it. Doctors are taken back when you tell them take you surf and read information on the net. Warning flags fly and they all tell you of the dangers of believing what you read! It wears me out to have to tell them that I do not believe everything I read, and that I am very well versed in the dangers and downfalls of open surfing concerning the reliability of web information.

It's pretty bad when you have to use reverse psychology om your own Doctors and make them relax about the knowledge you have obtained outside their realm of expertise. I never have been crazy enough to insinuate that web research is of higher quality than what my doctors have studied and paid for in time, sacrifice, and good old hard work. I do however consider myself well armed with knowledge, and have stayed abreast with the information and choices that my Neuro last laid out for me. If you stay well informed and question the things you do not understand, asking your Doctor does seem to improve you rapport with them, at least it has worked well for me.

To sum up what I have learned, listen to your doctor, compare what information has been laid out from all sources. Question what you do not understand, and make your decisions based on all things offered. I believe that trust in you Doctor is imperative, to making the right choices. Opinions on this post, whether they be positive or negative, are always welcomed...