Category Archives: Multiple Sclerosis

Multiple Sclerosis, tattoo, Tysabri

Tysabri Infusion #46 – and Saline Shortage!

Today was Tysabri infusion # 46 and boy did I need it.  My knees have felt like they are being blow torched every time I sat or stood.  I took special notice to the tiny bags of saline that were being used (read: rationed) and asked what the deal was.
Turns out there is a US hospital shortage –

http://news.yahoo.com/u-hospitals-hit-shortage-intravenous-saline-223426357–sector.html;_ylt=AwrBEiKkOOhSBmoAFufQtDMD

Tysabri # 35
Tysabri # 46
Multiple Sclerosis, tattoo, Technology

Tattoo Day – MS is no Fantasy Island

MS certainly remains a mystery as there is no cure – only treatments. Many argue there will never be a cure as there is no money to be made in the cure but that’s not positive thinking or a hopeful attitude. This can create unneeded additional stress which is another thing we MSers are told exacerbates our conditions further.
March brings MS awareness month and I’ve been planning something big and permanent. A Tattoo.  Many MSers show their Faith and Hope for a cure by making a permanent mark on their skin with meaning.
For me, this has been about a year in the thought and design process.   It included engaging a artist and fraternity brother, Jason Lenox.  I have known and held with high regard for many years.  http://www.jasonlenox.com/2014/01/broken-sun-tattoo-design/  The Tattoo artist, Dust Deimler – http://www.dustdeimler.com/ can be found at 717 Tattoo – in Mechanicsburg – http://717tattoo.com/  I was referred to him by a client/friend who had several hours of work with Dust.    It finally came to fruition this Past Sunday.

There are a lot of things going on here with many hidden elements but I wont disclose them all.  It’s a wind blown sun with tattered rays and a smirk.  Strength and power are represented even though it is weathered and beaten.  The Multiple Sclerosis “orange” ribbon is carried by the Sun and the Rays that are exposed and torn represent the Myelin sheath that covers the nerve fibers carrying impulses.  This Myelin gets destroyed and damaged in the chronic illness that myself and millions of others deal with on a daily basis. There are other things in there too but will remain personal.

March is Multiple Sclerosis Awareness month.  I’m aware every day….

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Multiple Sclerosis, Technology, WalkAide

Beware of Black Ice…AND Carry Your Cell Phone

I get so upset and frustrated many times not being able to do stuff I was able to.  On many occasion I forget I have MS or say fuck it I can do this, I need to feel worthy, useful, like I’m doing my share in the household.  Even if it’s the little shit.  Thinking…I’ll just take more time, focus, concentrate – it will be no problem.

WHAM!!  I fall on my ass and fail again.

I was settling in for the evening and just wrote out checks for some bills I could not pay on-line that needed to be mailed the next day.  My wife said she did not have time to stop earlier to get the mail.  I decided to venture out at 9:45pm and retrieve the mail and ready my money for the government to piss away in the next big scandal.  I grabbed my cane and went thru the garage which was not that cold and I would only be 2 minutes more out and back from the mailbox.  As soon as I left the garage, my 2nd hobble stride into the blacktop driveway I was “flat” on my hands and knees.  I smacked so hard I swear the neighbors heard it.  My entire body jolted from the impact except for the Innovative Neurotronics #WalkAide I landed on and cracked and damaged.  I’ll never understand why these new cuffs do not hold the device on the inside of the leg like my old one did.

It took me a minute or two to come to my senses.  Then the pain hit, then the disgust and depression of crushing my “can’t live without device” – The WalkAide.  I took it off my leg so I could start the long arduous process of maybe being able to get up from the slippery black ice.  Rolled on to 1 butt-cheek and realized I was stuck and had no grip at the same time.  Almost 25 minutes had passed by and I was getting colder and a frosty left cheek.  Desperately I scooched towards the tanbark and noticed the location of the other pieces I heard when I fell.   The battery and battery cover went flying but were still within arms reach.  I quickly used my 1 good hand to grab those and stuff them in my pocket.   There was a glimmer of hope as I felt my cell phone in there and was able to call my wife to bring a folding chair to help pull me up.

Just fucking pathetic is how I was feeling then and now, albeit Black Ice or was it MS? and my determination to keep going, not quitting, keep trying, keep moving, getting up again after another hard fought battle with gravity and this chronic illness.

blackice-walkaide

Multiple Sclerosis

Planning to Pee

Many of you with MS know this topic all too well.  Even if you plan, your plan can fail and it can be embarrassing to say the least.  I often think – What do the women of MS do?  Guys can carry wide mouth Gatorade bottles with them in the car for instance.  A truck driver gave me that tip.  But who really has the time and control to whip that out and then whip it out.  Especially when you are 90 minutes in to a snowstorm rush-hour traffic jam that requires +100% of your attention to avert death that is being tested by the spastic bladder that is about to burst.  As if mass transit busses sliding backwards down a hill at you was not nerve racking enough.

Another MS blog I follow had a recent post (http://richardmcohen.com/peeing-down-under/) on bathroom placement and alerting handicapable to the location [as in are there stairs because some of us MSers would never fucking make it].  Sounds like potential for a good app but could it make money?   My i-Inject App is still selling www.i-inject.com a couple copies a month but nothing like when it was released in 2009.

My life is affected and planned around my bathroom schedule, sad to say but its the truth.  Thanks MS.  Even with drugs, there is an occasional mishap.  Its not the end of the world.