Post-Biopsy, Pre-Freedom....

Charles Carmichael Swift

Good afternoon People of the Blog....from Rae, Lee and the Farm (including our newest addition --- Chuck Swift)

I know, the blogs aren't occurring in a fashion which keeps you glued to their updates anymore.  I guess this is what happens when you learn to accept life's obstacles as having deeper meaning.  It's been nearly a year since I fell down our spiral staircase and put a TINY fracture in my left foot.  That fracture took three months to heal and because of that I was sent down this path of medical discovery only to discover that the mysteries keep coming.

Between MRI's, EMG's, CMT and ALS studies...concluding in a muscle biopsy - nothing has come through conclusive.  Our last visit to the neurologist ended in the same way most of them do now: with very smart people who paid a lot of money for their education shaking their heads in confusion.  The muscle slides show atrophy (duh) but do not show any diseases that they know about.

The next step in the process is to bring my Mom in for an EMG study; they now want to stick and shock her to see if our nerves react in the same way.  She has dermatomyositis, an auto-immune disease that affects her muscles and skin differently than mine are being affected but the idea is that MAYBE I have some form of myositis.  I'll be taking a three month break for sanity in which time Dr. Sheikh is going to consult with some research scientists and inquire into their knowledge about neuromuscular diseases.  Maybe I'll have something named after me after all is said and done.  Skinny-Ass Leg Syndrome is currently the frontrunner.

It's like Seven Minutes in Heaven with the lights off just groping around hoping you get a feel for something you don't really understand yet.  I know the doctors are frustrated, but just in the five minutes I've been writing I can see I'm much more frustrated than I let on.  I think I use blogging as a way to sift through my situation and realize what I'm really feeling.  The challenges I've been faced with thus far have definitely changed my life but thanks again to an amazing wife and family, I'm able to stay relatively sane :-)

I began taking a rather well-marketed drug that while helping even out my pain levels in conjunction with another 'script, has contributed to me gaining 10 pounds in the two months.  I haven't quite begun the process of losing that weight just yet and while I can think of a million reasons why I haven't gotten off my ass in a while, none of them are valid.  It takes me a bit longer to recover from a workout these days, so I'll be constructing a regimen that is realistic and will allow for me to reach some simple goals quickly.  I'm in good heart health with a BP of 117/76 over the last few doctor visits and this will contribute to some good drumming!!

I think I'm just feeling a bit lazy and down.  It's exhausting to remain as positive as I've been over the last year.  Luckily, everything else in my life is smiles and sunshine - even when it gets dark the clouds part in quick fashion.  Music has been on my mind a lot lately which is great because in my younger, more angsty days it helped me work through a lot of issues.

Tim Lambesis

Charlin, Me and As I Lay Dying

As I mentioned in quite a few of the last blogs, I had an amazing year of concerts and 2011 was topped off with a  very special experience with my good friend Charlin and the guys of the metal band, As I Lay Dying.  We had the opportunity to take part in a private soundcheck for 15 die-hard fans.  I got a lot of memorabilia signed by the guys, including my cane "Old Flamey."


Tim, their singer thanked me for the opportunity to sign an object he had never signed before.  They were all very humble guys and a couple of them were much more shy than their on-stage energies would lead you to believe.

The week after that amazing concert I had a landmark day.  I went down to Dynamic Orthotics and Prosthetics and had the casts made for my braces.  Jason and Hope (orthotist in training) handed me about 20 pages worth of paperwork and with video camera in hand, took video evidence of my gait.  The whole time Jason and Hope were conversing and using language I didn't understand to describe my walking characteristics.


After ten minutes of this I took a seat and they took about 15 measurements per leg.  Starting at the balls of my feet, they worked their way up my legs and filled out their rather detailed "spec" sheets.  They then began a process that I'm all too familiar with: wetting bandages with casting goop on them (that's the technical term, of course).  The process took about 45 minutes, but by the end of it all both legs were encased and immobilized!

Standing on my own!

The fun part was about to come; Jason told me he was going to help me to my feet.  After rocking me upright, my instinct was to grab for the handrails to my sides.  Jason smiled at me and said, "I know you want to hang on, but if you let go you will be able to stand."  When I let go I looked in the mirror at the BIG, STUPID smile on my face.  I hadn't stood in one place without the support of a wall, a cane, a counter, a desk, a chair, an etc. in longer than I could remember.  They had aligned my hips, legs and ankles in such a fashion that it was uncomfortable but altogether necessary to allow for such stability.

I stood there, unaided for about 10 minutes while we chatted before they sat me back down and sawed them off.  It took four pairs of hands to pry the casts from my legs and by the time they were done, Jason had beads of sweating dripping from his forehead.  An hour and a half into the visit, I was beginning the rest of my ambulatory life.

I have also agreed to take part in a efficacy study to hopefully help other insurance companies realize that these braces work and are worthy investments.  In addition I have been invited to a closed Facebook group of people using the system; I'm looking forward to having a support group as part of this new endeavor.  There are only 73 of us.  My delivery window is late February, early March.  I CAN'T wait!!  The remaining work in December flew by and our time off was imminent.

Not really the Valley, but close enough...

The Christmas holiday was a memorable one for many reasons.  First off, it was Rae's first trip down to the middle of nowhere pseudo-Valley.  As we walked to our rental car I said to her, "Baby, get ready to unplug!"  The further we drove from the airport, the slower the cell phones worked.  3G went to Edge network, Edge would often drop out and we would get picked up by TELCEL...Mexico's towers.  We both received a text message that stated, "Data roaming charges are $19.95/MB, please contact your carrier for an International Data plan."  I said, UNPLUGGED, didn't I?

It was probably a bit eye-opening for Rachel.  There were 22 of us at Christmas Eve dinner: grandparents, their girls (including my Mom) and their husbands, the grandchildren (including me and my sister) and the great grandchildren.  We are a big HAPPY family and there was a lot of activity to soak in.  The weather stayed relatively gloomy for the majority of our time there, but when the clouds parted and the sun came out on Christmas day we made the most of the visibility.

AK-Rae

My cousins had shipped their various guns down to the Valley so they would have the opportunity to clear their heads, work on their marksmanship and stay sane.  We took a handgun, shotgun, WWII era rifle and an AK-47 back into my grandfather's ranch and were poised to pop off a few rounds.  Rachel and I had been considering purchasing a gun for home defense but were nervous only for lack of exposure.  After only an hour of learning from our cousins and trying our hand at target shooting with every option we had at our disposal, we had made the decision to arm our home sooner rather than later.

Watching the news these days is a sobering event.  Every day in this city bad things happen.  Every day in EVERY city something bad is happening.  That being said, evil's harbingers are becoming quite bold.  They come into houses during the daytime hours, regardless of the fact that someone is home and they take security away from others.  While I have a knife on my person most of the time and my knowledge of anatomy is so that I know where to put it and how to turn it so that someone will bleed out, it would require someone to be ON ME to make this scenario viable.  This has turned my eyes to the Academy weekly ads, posing questions to gun owners and acknowledging my new mindset.

After a week of window shopping I dragged Rae out to an Academy and put some shotguns in her hand.  She very quickly narrowed it down to a couple that she felt comfortable with and within a couple of days I was exercising my 2nd Amendment right to bear arms.  Of course, because I am OCD and a tech/gadget geek I must accessorize my Mossberg 500 Persuader.  My Amazon.com Wishlist is growing by the day.

New Years went off without a hitch and we had a WONDERFUL time at home.  We grilled steaks and had lemon butter shrimp and picked up some cute desserts (did I just lose my Man Card by saying that?).  We actually made it to midnight, albeit JUST PAST midnight!

The next morning was less enjoyable than it could have been, but what can ya say, it was New Year's Eve?!?!  I hope all of you have had a wonderful holiday season and are ready to tackle the new year with strength and vigor.  I'll update you soon, as things may only get more interesting!

-Lee