......Aaaaaaaand It's Gone

It's two in the afternoon.  I haven't passed out yet.  Guess it's a good day.

I've been having an issue with chronic fatigue in recent weeks.  I generally am up and going between 9 and 10AM.  On most days, anywhere between 4 and 6PM, my body literally shuts down.  Within a matter of minutes, I go from wide awake to having to force my eyes open.  If I don't lay down, the room starts to spin.  The walls go wavy.  It's scary.

I discovered a couple of days ago that I was accidentally taking one medication, thinking it was another.  Instead of taking Pilocarpine, which helps me generate saliva, I was taking two EXTRA Proplanalol a day.  I can't remember offhand what Proplanalol does, but it's used as a blood pressure medicine.  I'm also taking Lisinopril and Clonodine, which are also blood pressure medications.  The Clonodine helps with my Tourette's, and can work as a pain reliever when coupled with the Lyrica I'm taking.  So...long story short (too late), I was taking a total of seven doses of three different blood pressure medications daily.  It's a wonder I didn't die in my sleep.

When you're taking (not including any ibuprofen or pain medication) four dozen pills every day, it's easy to get confused.

Not pictured:  Black tar heroin and the crushed Aderall that I snort in the morning.  ;)

If you told me as a kid that I'd be doing thousands of dollars each month of drugs, I wouldn't picture it like this.  It could always be worse, I guess.  Things have been worse.  I shouldn't complain.

There's A Light At The End Of The Tunnel. Let's Hope It's Not A Freight Train...

I've spent nearly three hours inside an MRI this afternoon, with my neck and head clamped into place, so that I couldn't move.  It was the longest and most stressful session I think I've had yet.  The claustrophobia really got to me toward the end. 

Since then, I've had a Vicodin and am spending the rest of the evening in my new recliner...whittling down my Netflix queue. I was hoping to spend some quality time with my family, but this disease had other plans for me.

Quickly looking at the images, it appears that I may have a number of small lesions on my brain.  I also have a shocking number of herniations throughout my spine. If there are lesions, it means that I have MS.

The thought of MS is quite a blow, but it will be good to finally have a name to associate with how I've been feeling.  With a recent dose of steroids, I'm feeling better now than I have since August of last year.  You can probably tell, since I've written more this week than I have all year. 

My neurologist appointment has been moved up from June 28th to June 11.  Hopefully, we'll have some news then.

I FEEL GREAT!!!....Damn.....

If you have been following this blog for any extended period of time, you'll know of the medical issues I've had in recent years.  Functioning from day to day would be difficult enough, if I had just one of the many conditions that I am forced to deal with. 

As a quick recap, in June 2009, I was diagnosed with Tourette's Syndrome.  The following month, I was diagnosed with PTSD.  I had taken short term disability from work, from early February of that year, until mid-July.  When I came back, I lasted two days, before I was vomiting in the waste basket at my desk and crying in the bathroom stalls.  Needless to say, I haven't worked a day since.

In March of 2011, I started developing a number of unusual symptoms.  I won't go into details.  But, if you're interested, you can read more about them here.

So, March of 2011, I was diagnosed with a Chiari Malformation and Type 2 Diabetes.  A month later, I was diagnosed with a herniated disc at L5 S1.  In June, I had a partial discectomy.  In September, another partial discectomy and a spinal fusion.  No change in symptoms.

In January of 2012, doctors discovered a massive benign cyst, resting against the pineal gland, in the center of my brain.  It's inoperable, but everyone agrees that it shouldn't be causing any of the symptoms that I currently have.

In September of 2012, my allergist discovered that I have Sjogren's Syndrome, almost by accident.  He thought that some of my symptoms could be due to a food allergy.  I had been told before that I was allergic to gluten.  After testing 87 different foods (and gluten), everything came back negative.  I reacted worse to the saline, than on any of the allergens tested.  On a whim, he ordered an auto-immune panel.

If you're unfamiliar with Sjogren's, it's an auto-immune disease that attacks the moisture and mucus producing glands in your body.  The most common symptoms are dry eyes and a dry mouth.  It can manifest a number of symptoms that mimic other diseases, like lupus or Multiple Sclerosis.  Speaking for myself, I constantly have a dry mouth.  For someone that doesn't smoke, I certainly have had my fair share of cottonmouth and pot lip.  My nose gets so dry, that I have random nosebleeds throughout the day.  Also, the wax in my ears has all but disappeared.  I'm on medication right now to help me produce saliva.

Since maybe October or November of 2011, I have had increasing and worsening issues with pain and neuropathy.  Occasionally, I'll have electric jolts jump through my body.  At times, I have a sudden, sharp pain, as if someone had just amputated my hand or my leg.  Lately, I have pain on the soles of my feet and on my fingertips, that feel like a quick deep paper cut.  I have constant joint and muscle pain, often associated with lupus or a severe case of Sjogren's.

I also have an issue where, regardless of what I've done that day, my body shuts down at approximately 3PM every day.  It's not a feeling of exhaustion.  My brain literally starts shutting itself down.  Within a matter of minutes, I stop thinking clearly.  I start slurring my words.  And, if I don't get to my bed, I'll just fall asleep wherever I'm sitting.  Most days, I wake up not even remembering falling asleep.

I scheduled an appointment with my neurologist, because the pain has become unbearable.  I do my best not to take any narcotics.  I come from a long line of addicts and alcoholics.  Last thing I need is to become hooked on opiates.  In any event, I have been dealing with this long enough to know that my pain was neurological, and not rheumotological in nature. 

My neurologist had finally received the test results from when I was originally hospitalized in March 2011.  At that time, a spinal tap was done.  Both to test for Multiple Sclerosis, and to complete a CT myleogram to get a clearer image of my spine.  He said that the lab results showed extremely high protein levels in my spinal fluid.  If he was to diagnose me, solely based on those lab results, he would say that I have Multiple Sclerosis.  I have a full set of MRIs on Tuesday to check for lesions or demylination on the nerves in my spinal cord.  In the meantime, he was going to start basic treatment AS IF I have Multiple Sclerosis.  On Thursday morning, I was placed on a heavy dose of steroids.  My Lyrica was doubled, to 300mg twice a day.  And, I was placed on Clonodine.  In addition to helping with Tourette's tics, Clonodine works well in connection with other nerve medications, like Lyrica, to reduce nerve pain.

The last three days are the best I have felt in close to six months.  I haven't had that daily "crash".  My pain, both joint and nerve pain, are virtually gone.  I still have a little pain here and there, but it's nothing that a couple of ibuprofen can't handle.  Occasionally, I'll still get lightheaded.  I still have double vision from time to time.  But, I don't have the brain fog or confusion like I used to.  Honestly, I feel GREAT!

And...that's a problem.

It looks like I have MS.  It makes sense.  For years now, I've had every single symptom listed for the disease.  As of yet, I haven't had any detectable lesions.  Then again, 15-20% of those with Multiple Sclerosis have no lesions show on an MRI.  Maybe, I'm part of that 15-20%.

It's refreshing to finally see the light at the end of this tunnel.  I really believe that we're getting close to having a definitive answer.  No more guessing.  No more useless blood tests and MRIs.  No more clueless doctors.  I know what's wrong.

Holy shit.  I know what's wrong.  That's fucking scary.  I've seen MS progression in other people.  And, while everyone is different, I have an idea as to what to expect in the coming years.  It's not going to be pretty.  While medication and therapy will improve my quality of life, it's all downhill from here.  It's really a bittersweet moment in my life.

I'm still trying to wrap my head around everything.  This is something that, two years ago, every neurologist I spoke with said, "No.  It's not possible.".  I put the possibility of MS out of my head, and was able to focus my energy on those that were chronic, but not as debilitating. This is a difficult possibility to accept.

I really don't know where to go from here.  I'm going to have to make a number of big changes in my life.  We're living in the worst major metropolitan city in the nation for someone with MS.  Needless to say, Nadia and I are going to have to make some important decisions in the near future.

At least I have an answer.  It may not be the answer I've been looking for.  But, in the end, it's better than not knowing at all.

Long Time No See

I feel like I've failed my site. 

This is the first blog post I've written in over a month.  And, fuck has it been a crazy month.  While on my gluten free diet, my health started to deteriorate.  The returning symptoms were primarily neurological in nature.  Pain, asymmetrical numbness, but very little issues when it comes to my digestive system.  I thought that maybe I would introduce gluten back into my diet, and see if I was truly gluten intolerant, or if it was merely a coincidence. 

After eating gluten continuously for the last two weeks, I have noticed an occasional stomach issue.  The biggest difference I can tell is psychologically.  I am much more stressed out and depressed now than what I was before.

Last week, I saw an allergist.  They did a series of tests for food allergies.  Of the 82 foods I was tested for, I was allergic to none.  Not allergic in the least to wheat, barley, oats, malt, or rice.  The doctor wants to do another blood test for Celiac, but is saying that it will almost definitely come back negative.  It is extremely rare for someone to be allergic to gluten, without having even a hint of another food allergy.  I had a number of vials of blood taken to be tested for every auto-immune disease under the sun.  I am scheduled to see my doctor tomorrow for the results.  I don't know what makes me more nervous, finding out that I have an auto-immune disorder, or hearing that I'm fine.

In other recent news, I have been putting a number of hours into the animal rescue.  It's easily the most rewarding thing I've ever done.  I love helping these little guys find homes.  There are days when it is extremely stressful, though.  Not because of the dogs, or the work that I do.  But, because of some of the cunts that I have to deal with, and the drama they tend to create.  If we could only boot some of the egos and the arrogance from the group, life would be much easier.  As it is, there are some days when it's not even worth trying. 

I'm tired.  It's as simple as that.  I'm going to try to schedule out my life, as I have been neglecting some of the things that are very important to me.  Dedicate so much time per week to my site.  So much to helping my friends with their adoption blog.  So much toward my political activism.  So much to my family.  And, so much to the rescue.  It all sounds great in theory.  It will be interesting to see how the logistics work themselves out.

300

THIS.....IS.....AWESOME!!!!!

Tomorrow will be six weeks since I started a gluten free diet.  In that time, I have lost 22 pounds.  When I weighed myself this morning, I came in at 300.

Today is the first time in my adult life, 22 years to be exact, that I have been at this weight.  The last time was during my sophomore year of high school in 1990.  It's crazy to think that very soon, within the next day or so, the digital scale will have the number 2 as the first digit of my weight.  I have never seen that before.

This is really hard to believe.  And, all because of gluten.  Wow...

What You Can Accomplish When You Feel Good

 This is the cleanest our apartment has been since we moved in in December.  Last Thursday, we moved furniture and unpacked a stack of boxes and totes that were untouched from the time we got here.  

I have vacuumed twice since then.  At the moment, I am bored as all hell, because there isn't anything for me to do around here.  Load the washer.  Wait an hour.  Transfer it to the dryer.  Repeat.

Lately, it seems like I have no idea what I'm doing when it comes to the site.  First, I can't think of anything to write about.  Secondly, I have sort of forgotten how to write.  I have never written while in a good mood.  It's very strange.

My activism has suffered as well.  It's not that I'm no longer interested in the issues.  It's that I'm not angry anymore.  Not angry enough to raise hell about it, at least.  I am much more of a positive person than I ever thought I was.

Who would have thought that being healthy and happy would pose problems?  Guess I need to find a new hobby.....or a job.

Video Diary - Two Weeks Gluten Free

I have been gluten free for 14 days now.  The difference in the way I feel is unbelievable.  I will post details later (hopefully tomorrow), but I wanted to record a short video to show the improvement in my psychological state and tone of voice.

My wife hates these video diaries for a number of reasons.  The lighting sucks.  The audio isn't all that good.  I say "um" a lot...and I tend to ramble.   She's right....about everything.  Sorry.



Update:  34 "um"s in four minutes and twenty seconds.  If you were playing the "Adam Says Um" drinking game, you'd be dead.  :)

1,000 Posts

This post marks a significant milestone for 'The Twitch'.  It's my 1,000th post.  When I started the site in September of 2009, it was with the intention of making it an online journal of sorts to document my newly diagnosed Tourette's Syndrome and PTSD.  I never would have thought that, two and a half years later, the page would have changed in the ways that it has to become was it is today.

In my 36 years of life, I have not followed through with 1,000 of anything.  I have consistently, time after time, given up when things have gotten difficult or required more effort than I was willing to put into it.  Piano lessons.  Saxophone lessons.  There was even a time in my early twenties, when I paid a year's worth of rental fees for a cello up front, with the intention of learning to play it.  It made for an interesting conversation piece to impress the ladies.  Multiple guitars.  Dozens of books, magazines and video games I have never finished.  To see that I am writing my thousandth post is truly surprising to see.  'The Twitch' has become my baby - my job in a way.

That being said:  If you are a regular reader of the site, or a friend of mine on Facebook, you've probably noticed the lack of posts coming from the website in recent weeks.  In September, I posted 118 articles.  In October, 80.  November and December saw less than two dozen each.  It's the 7th of February, and this is my first post of 2012.  Well, let's just say that my head isn't in the right place.

It's really hard to explain.

As most of you know, I have been dealing with a number of medical issues over the last year or so.  Lately, things have been seriously affecting my brain.  It has become increasingly difficult to express a coherent thought.

Writing seems to be easier than talking.  Still, during a large part of the day, I have trouble reading and spelling even the simplest of words.  It's extremely frustrating, considering that in the past, I was writing as many as a dozen posts per day.

In the coming days, I'm hoping to get myself motivated enough to start writing again on a semi-regular basis.  I have quite a bit to explain concerning my medical situation.  I have a number of new issues that will likely require a couple of major surgeries this year.  It's going to be a very long post, and I'm not really in the mood at the moment to write at length about what's keeping me bedridden.  Let's just say that it's not good.

As I was writing that last paragraph, this song started playing on Pandora.  I've heard it hundreds of times. It's one of my favorite tunes.  This time, however, the words took on a different meaning to me.  I'll be honest:  I cried a bit.

Update On My Spinal Issues: Surgery, Long Recovery Ahead (Photos)

As many of you know, I had surgery on June 20th, to remove to the disc between my L5 and S1 vertebrae. After the procedure, I felt amazing.  Sadly, the joy was short lived.

By June 30th, I had to have my first epidural to help ease the pain.  The pain was so bad, they completed a series of MRIs to verify that I didn't a hematoma in my spine.  I didn't.  The epidural had no effect.  I had two additional epidurals on July 14th, and again on August 4th.  Again, no results.

I had a chance to see my surgeon last Friday, the 19th.  Normally when an MRI is completed so soon following a discectomy, the films are typically very difficult to read.  There are numerous air pockets, shadows and open spaces that can be misinterpreted by the radiologist.  When it came to my images, however, the radiologist made it very clear:  The partial disc remaining in L5/S1 had re-herniated in the space left open by the removed disc.  It was now pressing up against my spinal cord.

My doctor said he always go in and remove the rest of disc, and end it at that.  The problem with that option, is that there is the likelihood that in three months I would be back in surgery.  Also, the two discs above my L5/S1 are having problems.  Considering my weight and frame, my spine could eventually tumble like dominoes.

The route we decided to go was a two-part surgery.  I am having a graft implanted, and then a fusion between my L5 and S1.  I am scheduled for the implant on the morning of September 19th.  The fusion is scheduled for scheduled for September 20th.

In case you were wondering about the process involved, I brought pictured and diagrams.  Pour yourself a drink.  Take a seat.  This may take a moment.

Everything takes place over the course of two surgeries.  During the first one, an incision is made along my "bikini area", (I look amazing in a bikini, BTW) and my intestines are gently set aside.  My surgeon will make an incision at what would be the front of my spine, and scoop out the remaining pieces of disc that are currently in there.  He will then insert a plastic graft, sort of like a fake disc.  It looks like this:

Model of graft in L4/L5 disc

The photo above is one that I took of a model at my surgeon's office.  The graft that you see is much like the one that will be implanted in my spine.  It's hollow and will be filled with bone fragments, that, from what I think I understand, will eventually turn into bone?  There are a couple of major differences between the one in the pic and the type that they'll use on me.  In the model, the graft is in the L4/L5 slot.  My herniation is in L5/S1, so imagine the graft one place lower.  Also, since L5/S1 is the lowest disc on the spine, and the one closest to the hip bone, the long/rectangular graft that you see would bump into the hip bone if inserted.  I will need a thicker graft, with more of a square shape.

Since my surgery isn't scheduled until 11:30AM, they won't have enough time to complete both procedures on the same day.  The next morning is when the magic happens.

An incision is made - this time on my back (cue suspenseful music).  A set of four screws are set into my vertebrae, two on each side to secure, what is essentially a titanium brace, to my spine.  My first two questions, as I'm sure are yours:  Will I set off airport metal detectors? And, Is the fusion magnetic? Can I still get an MRI?  Fortunately, the answer to both are No.  I can still get an MRI.  Titanium is not magnetic.  From what I have been told the placement of the "anchors" should not be painful since bone does not have any nerve.

Keep in mind, the placement of my fusion will be one slot lower than that of the picture, since the model has a fusion of L4/L5, and I need a fusion of L5/S1.

So, what's in store after that?  A lot of lying down.  I'm required to wear a back brace for the next four months, as well as those really tight thigh highs that keep you from getting blood clots (I forget what they're called).

For the first four months after surgery, I'm not allowed to bend over, lift anything over 5 pounds or sit for more than ten minutes at a time.  To put it simply....

• Sleeping
• Netflix
• Video Games
• ...and a metric shitload of blogging.

My wife will be working full time, and Lennon will be in preschool (since there's no way in Hell I'll have the ability to care for her).  So, I apologize in advance for the posts on "this commercial I saw", or "Have you ever noticed how Coke makes you burp more than other sodas?"

I'm not going to enjoy it anymore than you will, believe me.

"I'm Baaaaack"

...In a limited capacity.  I've had some good news and bad news over the last week.  The good news is that I have a new laptop.  It's a dream compared to my old Vaio.  More memory.  Double the hard drive (and one that works!).  Roughly three times the processing speed.  And it only cost me the equivalent of a month's rent and auto insurance!  JOY!!!!

As I said before, buying a new laptop was only going to be about $150 more than getting it repaired.  You see, that's where Geek Squad fucks you.  Pay over $500 to get a two year old computer operational again, or drop $700 thirty feet to the right and walk out with a new machine.  Out of spite, I purchased this one at Office Max.  Besides, they seemed to have the best deal around.

In other news, my back is seriously FUCKED.  I saw my surgeon last week, and it looks like I have another procedure coming up soon.  When I had my discectomy on June 20th, only the herniated portion of disc was removed.  As they chipped away at the offending portion of disc, new disc material was exposed.

At first, it has the consistency of the center of a Tootsie Roll lollipop.  As time goes by, it becomes more gelatinous.  In my situation, it appears that the new disc material has gone into the space left open by the removal of the old disc.  In other words, I have the same herniation...on the same disc.  It's still cutting off my spinal cord from time to time.

I am in excruciating pain.  I had another epidural on Thursday of last week, but haven't seen any relief as of yet.  In the meantime, I'm trying to get my new machine to resemble something that I'm accustomed to.  Surprisingly, there wasn't much in the way of bloatware (preloaded software) out of the box.  I only had a small handful of card game trials and a couple of internet tool bars to delete.  ITunes is another story, altogether.  It will probably take weeks to get my account to look as crystal clear as it was previously.  Roughly 39,000 songs to reorganize....manually.  Ugh.

In any event, it's going to take me a few days to get back into my groove online.  Please have patience with me.  :)

I'm Still Here...Just Technologically Stinted

Hey everybody.

Just a quick update for the three of you subscribers that are left....LOL.  I haven't been able to post anything since last Friday as my laptop has crapped out on me.  The Geek Squad seems to think that my hard drive is in the process of going kaput.  If that is the case, I'm looking at a minimum of about $450 (that I don't have) to get it fixed.  Considering that my battery life is currently at about 15 minutes per charge, and that my computer crashes the entire network for a half an hour every time I turn it on, I think it might be worth an extra $150, and just get a new laptop.

That being said, it's going to take me a couple of days to transfer everything over from my old hard drive and get back to where I was before this whole fiasco started.

I also have an appointment with my spine surgeon tomorrow afternoon, and an epidural scheduled for Thursday.  Needless to say, this isn't going to be a fun week.  I don't know whether I'm more nervous about the prospect of having another surgery, or the possibility of being told that I don't need one.  I am hurting so bad right now.  I can't even describe how I'm feeling.  I try my best to get by without pain killers, since they usually don't work anyway, but it's getting difficult.

So...long story short....I will be posting later on this week.  I have some very interesting stuff in the pipeline.  Just bear with me.

Thanks.

It's Going To Be A Slow Blogging Weekend

Hey everyone.

I just wanted to take a moment to welcome my new readers/followers.  I've noticed that in the last couple of weeks, I have added quite a few followers on my RSS feed.  Hi there.  Don't be afraid to comment.  Hope you enjoy the site.

In related news, it's probably going to be a slow weekend for The Twitch.  I am in excruciating back pain, and it's only going to get worse.  Since my surgery, I have (for obvious reasons) been avoiding a number of things around the apartment.  So, I'm probably going to be doing a lot of bending in order to get some stuff done.  Not smart, but necessary.

We're also house sitting for my in-laws this weekend, trying to celebrate my wife's birthday tomorrow night and I would like to try to get 'Captain America' in there somewhere.

I have so many things that I want to write about.  In the pipeline, I have a number of posts that are going to be a little wordy.  I'm not used to writing such large pieces, and they'll probably look a bit out of place, but I have a number of things that I need to get off of my chest.

That being said, I may have some days with only 3 or 4 posts, and some with 15.  Depends on what I'm working on.  I'm also in the process of starting two additional sites (Probably not the best use of my time, but I really want to start making a professional go at blogging.  I'm on Social Security Disability until at least May of 2015, so I need to do something with my free time.  Besides, my monthly Social Security checks account for about 55% of what I used to make at my last job.  Every little bit of revenue helps.

You may see some changes in the way of layout in the next couple of weeks.  There may also be a small increase in the amount of advertising space taken up on my site.  Again, gotta pay the bills.

As you have probably noticed, the site has recently changed from thedailytwitch.blogspot.com to thetwitchonline.com.  If you haven't already changed the address in your bookmarks, please do so.  Google will be temporarily redirecting any hits onto the old "The Daily Twitch" site to the new "Twitch Online" site, but I'm not sure how long they will continue to in the future.

Also, if you are reading this via a feed, please take a moment and reset your feed to the new site.  Thanks.

I'm looking forward to keeping you all entertained and informed as to what's going on around me.  If you ever feel like dropping me a line, you can reach me at twitch@thetwitchonline.com.

Well, The Surgery Didn't Kill Me

I'm still here, and I'm relatively pain free.

When I woke up on Monday afternoon, it was a bit of a mind fuck to be honest.  I looked at my wife, and in my head I'm thinking, "Shit.  My back feels great.  They must have me on some nice painkillers."  Then logic crept in.

"Wait a second.  They wouldn't give me painkillers while I was still under anesthesia.  They would have to know my pain level and go from there.  Otherwise, they'd probably kill me.  Right?!?"  (Keep in mind, all of this is running through my head over the course of a second and a half.)

I'm still looking at my wife at this point, and the look on my face goes from confusion to pure joy.

"Hey baby!"

I sat in my hospital room for almost 7 hours before the nurses actually pressed me on my pain.  They asked how I was feeling.

"I'm doin' great."

"Are you feeling any pain?"

"No.  Not really"

"Well, on a scale of 1 to 10, what would you say that you're at?"

"About a 6, but you have to realize that I was at about an 8 before the surgery.  And, that was with Dilaudid."

I did have a couple of "complications".  Your disc is supposed to be somewhat of a spongy consistency.  When my doctor opened my back up, the disc was entirely calcified.  It was essentially bone.  They had to chip away at it with a drill to get it out.  It hadn't fused to my spine, so it was floating between my discs, (which was my L5 and S1 by the way.  I thought it was between L4 and L5.) so when I stood, I had sharp bone pinching my spinal cord.  No wonder I was in so much pain.

The calcification usually doesn't occur in someone unless they are a lifelong, heavy smoker.  The doctor was shocked to find out that I didn't smoke or drink.  I never have.  He said I have the back of a 65 year old man that has been smoking for the last 50 years or more.  I clearly have multiple back surgeries in my future.

Since the disc had to be drilled away piece by piece, what would have been a one hour procedure turned into four hours.  The doctor also had to move some of my nerves around to get all of the pieces out.  As a result, I have had some nerve/numbness issues on my left side.  For the first two or three days, I couldn't feel most of my left arm or anything in three fingers in my left hand.  As of 11pm last night, and currently, I have zero..no...nada feeling in my left leg.  It's completely dead.  When I'm walking, I don't even feel my foot touching the ground.  Supposedly, I should get the feeling back in the next few days.  If not, I may have to walk with a cane for a while.

Sure beats the pain or the collapsing bullshit that I've had to deal with for the last few months.  By the way, even with the numb leg, I haven't had a loss of my legs.

All in all, I call things a success.

Medical Update (Possibly The Last Post For A While)

The last two weeks have seen much of the same.  I'm starting to lose the ability to walk again.  As of last night, I'm lurching when I walk, and am losing bowel control off and on.

If there is any good news to take away from these last two to three weeks, I am officially disabled.  I received notification from Social Security on the day that I came home from the hospital a couple of weeks ago, that my latest appeal was approved.  Medicare goes into effect in October.  My first Social Security check should be in the mail next month.  This is from my initial claim regarding my Tourette's Syndrome and PTSD.  I'm approved through May of 2015.  Once I get this current situation figured out, I should be golden for the rest of my life.

Speaking of my current condition, I saw a spinal surgeon on Wednesday.  He first read the reports from my spinal MRIs and said that I should be helped with pain medication and therapy.  Then he pulled up the images.  The first word out of his mouth was "Jesus".  He said the report was "highly underestimated".  There is a disc herniation near my tail bone that is almost pressing on my spinal cord.  He immediately ordered an epidural for the pain to be administered at a local hospital. (It has to be approved by insurance first, so I probably won't have it until mid next week.)  He also ordered a standing MRI.  There is a possibility that the disc is pushing out further while I am sitting or standing than when I am laying down.  If so, it could be pinching my spinal cord or a nerve that controls my leg or bowel functions.

About 3 weeks ago, I had an SSEP.  It's a test to measure how quickly your nerves pass a signal from a point in your body to your brain and back.  When you have it done on your legs, an electrode is placed on your knee.  When the shock goes to your knee, your big toe is supposed to twitch.

The first test I had, they couldn't get the big toe on my right foot to twitch.  My neurologist ordered a second test, thinking the technician did it incorrectly.  They didn't.

I had it done a second time last week.  This time around, not only did the big toe on EITHER toe not twitch, but I couldn't feel the shock at all in either of my knees.  My neurologist called me Wednesday night to go over the results of the second test.  He said that I had some "latency issues".  When I pressed him for some additional details, he said, "In simple terms, your brain never got the signal.  It reached your back and stopped.  Basically, your brain doesn't know that your legs exist."  Two weeks prior, I had normal readings on my left leg.  Now, they can't get a reading at all from my left leg.

He was going to call my new spinal doctor at home and recommend spinal surgery.  As far as a time frame goes...I don't know.  Hopefully, the MRI will provide some answers.  If not, he may need to open me up, and just start looking around.  Needless to say at this point, I have some serious neurological shit going on.

I am stressed out beyond imagination.  At the moment, I am visiting friends in Tucson.  I don't want to deal with this.  I don't know how to deal with this.

Right now, I don't want to write anymore.  Not for a while, at least.  I just don't have the energy for it.  Seems more and more like there are 19 things I want to write about, but I only have it in me to do one or two quick little blurbs.  It does nothing but frustrate me, and that's the last thing I need right now.

A Fascinating Conversation With A Hospital Chaplain

As many of you know, I was in the hospital again last week.  It was my third hospital stay since the second week of March. As has been my experience, on the first morning of my stay, the hospital chaplain usually visits.  In the past, I've told them that I'm atheist, and they tell me to have a nice day and walk out of the room.  This time was remarkably different.

It was 9:30AM Monday morning.  Roughly 13 hours earlier, I had seen President Obama announce that Osama bin Laden had been killed in Pakistan.  I fell asleep the night before watching New Yorkers sing the National Anthem at Ground Zero from my hospital bed.  Monday, May 2, 2011, was the dawn of a new era for the United States and for the world.

The chaplain was a dead give away.  The nurses all wore soft soled shoes.  None of the patients on my floor walked past my room (I was at the end of the floor).  And, all of the visitors either wore tennis shoes or sandals.  I could hear his wooden heals on approach 45 seconds before he got to my room.  He walked at a very calm and even pace.

He entered my room and sheepishly peeked his head around the curtain to see if I was awake.  When seeing that I had already eaten my breakfast, he walked up to my bed and introduced himself.  His name was Ahmed.  He explained that he was Muslim.  Upon seeing my beard (albeit unruly and unkempt at the time), he asked if I was Islam as well.  Honestly, I probably could have entered a bin Laden lookalike contest at the time.  I told him I wasn't.  I explained to him that I was an atheist.

I could only imagine the type of conversations he was having that morning, with bin Laden being shot the night before.  Immediately, without even hesitating, he started defending his religion.  You know, he started going into the "Islam is a peaceful religion" bit.  I had to interrupt him.

I explained that I knew that the Prophet Muhammad was a messenger of peace, and that Allah is a peaceful god.  I told him that for centuries, people have killed others in the name of their prophet or their god.  Sometimes that prophet's name is Jesus.  Sometimes, that's their god's name.  Sometimes, they don't even know the name of their god.

"There is fanaticism in every religion", I said.I explained to him that I used to be an "ordained minister" (what a joke).  I told him that the reason why I am atheist now, is because I saw the fanaticism in the church I was in as well.  Religion attracts crazy people.  There are crazy Muslims, just as there are crazy Baptists, Pentecostals, Methodists, Lutherans, Catholics, and Jehovah's Witnesses.

Then I dropped a bomb on him.  I told him I owned a Koran.  I purchased one last September 11th on International Buy A Koran Day.  He was surprised that 1.) a "non believer" would own a Koran, and 2.) that there was actually an international show of support for the Muslim community in which people would go to a bookstore and purchase one of their holy books.  He was almost moved to tears.  He asked me if I had read any of it, which I said that I did.  The copy that I have is in both Arabic and English.

He asked me if I was married.  I told him I was.  He asked if I had a "good wife".  I told him that I had a wonderful, supportive wife.  I said that with the health problems that I have been dealing with recently, if it weren't for her taking care of my daughter and myself in and out of the hospital, I don't know how I would have made it.   Ahmed extolled the virtues of a good wife, though the way he did so was somewhat antiquated.

"A good wife will take care of your children.  She won't spend all of your money.  She'll make sure you have a clean house to come to when you get home from work."

I found it to be a bit laughable, but I got his point.  I have a wonderful partner.  I have spent most of the last six weeks on my back.  Not only has my wife taken care of our two year old single handedly, but she has also waited on me hand and foot.  She has cooked my meals, refilled my drinks, and brought me my medication.  She has picked up my share of the household chores. She has also driven me to and from appointments for the last few weeks.  I really am lucky to have her.

My conversation with Ahmed lasted the better part of an hour.  It was the most pleasant conversation I have had regarding religion in recent memory.  Considering what had happened the previous day, I'm sure Ahmed had thought the conversation was going to go into a different direction.  It's a rare and wonderful thing when two individuals with such varying concepts on religion can come together, have an educated conversation about their beliefs, walk away feeling respected, and have an untold respect for the other in return.

A Two Year Old's "To Do List"

Earlier today, I had an appointment at the hospital downtown for a couple of tests to rule out possible conditions that may be causing my "mystery illness". I was there for approximately a little more than four hours, and had an SSEP, as well as a Doppler procedure on the arteries and veins on my legs.  From what I understand, my little girl was, to say the least, a handful.

On the way home, my wife and I were talking about what we had planned for the rest of the day.  Lennon suddenly piped up from her car seat and declared her "To Do List" for the day, as follows:

1. Climb up the stairs when we get home.
2. Put Star Kitty (her best friend/favorite stuffed animal) to bed for a nap.
3. Climb the trees.
4. Save the monkeys.
5. Save ALL the pandas.

Goddamn.  And to think, all I really have to do is take out the trash today.

The Incredible Shrinking Twitch

As some of you know, since this whole "mystery illness" thing started, I've been losing a lot of weight too.  Just how much weight is a bit shocking.

I see a number of doctors for various conditions I'm dealing with, whether it be my Tourette's Syndrome, or just my primary physician.  In late October/early November, I weighed about 379 lbs, depending on which doctor's scale I stepped on.  My weight has fluctuated anywhere from 340 to 375 for the better part of the last 10 years. I have worn a size 4XL t-shirt since my sophomore year of high school.  I have always been a big guy.  In my adult years, I have gotten used to it.

This is a picture of me standing outside a fitting room at Target on Tuesday.

I am wearing a 2XL t-shirt, for the first time since the sixth grade.  That's almost 25 years, people.  Last Tuesday, I was at a doctors appointment and was weighed at 317 lbs.  This Tuesday, I weighed in at an even 300.  I haven't weighed 300 lbs since 1989, during my freshman year of high school.  Granted, if you look at the shirt, it's way too short for me.  Even a standard 2X shirt isn't made for someone that is 6' 4 1/2".  My wife took my measurements last week.  Since November, I have lost roughly 10 inches on my chest, and probably 6 inches on my waist.

In a sense, this is wonderful.  I really needed to lose the weight.  But, this is really freaking me the fuck out.  I have lost 80 pounds, by doing NOTHING, in 4-5 months.  That comes to 22% of my body weight.  I haven't changed my diet at all.  I haven't exercised.  I lost 17 pounds just in the last WEEK!!!  Something isn't right.  My fingers have even gotten skinnier to the point that I need to resize my wedding rings.

Doctors have ruled out Multiple Sclerosis and Lou Gehrig's Disease.  With all of the MRIs, CT scans, and blood work done, I would think that they would have found cancer, especially if it was on my spine or brain.  What else could be giving me all of these weird symptoms. 

An Update On My Health aka "It's A Long Story"

There is a longstanding tradition on Tumblr, in which bloggers participate in "TMI (Too Much Information) Tuesdays".  It looks as though I'm going to carry that tradition over to Blogspot with this post.

You may have noticed that I have been relatively absent over the last two to three weeks.  I would like to say that I have been on Spring Break in Ft. Lauderdale.  Sadly, that hasn't been the case.  Instead, I have spent most of the last two weeks in two different hospitals.  Connected to machines, being poked and prodded every fifteen minutes, and being served food I wouldn't even give my dog.

The problems started two weeks ago.  I was walking in Petsmart around noon with my little girl and my legs gave out.  My knees buckled.  If it wasn't for the fact that I was pushing a shopping cart, I would have hit the ground.  Fifteen minutes later, it happened again.  Then again a half hour later.  I didn't have any pain in my legs.  They weren't weak at all.  It was like someone flipped off a switch in my brain and quickly switched it back on again.  Someone pressed a reset button for my legs.

At about four o'clock that afternoon, I was chasing after my daughter at the mall, and it happened a fourth time.  That was when I started to freak out.  I called my primary physician, and explained to him the situation. I asked him whether I should come into urgent care or go to the hospital.  He said that considering my symptoms, he wouldn't have any of the equipment necessary to test for potential conditions.  He referred me to the hospital.

I got to the hospital on Monday night at around 8PM.  After explaining what had happened over the course of the day, they took me back to triage to get some blood samples taken.  Meanwhile, they called my neurologist.

Let me tell you how much of a rock star my neurologist is.  I am sitting in the waiting room, and the nurse comes out, a little dumbfounded, and says, "I don't know who your doctor is, but you need to stay with him." "Our MRI team went home four hours ago, and your doctor is forcing our doctors to call them at home and make them come back in." (Yeah, he's a BAMF.)  He informed the ER doctors that they must admit me, and not to release me until a certain list of tests were done and results were in.

When I was admitted to my room, I was informed that my blood sugar that night was 346.  I had had a Coke and a cocoa from Starbucks over the course of the day, but, besides that, I didn't have anything to eat since 11AM.  My blood sugar should have been around 100 or less.  I also found out that my A1C, the 3 month average of my glucose levels, was at 9.7.  They should be below a 6.  I had them checked roughly 6 weeks prior, and there were no red flags from my doctor.  A 9.7 A1C is a level that makes you insulin dependent.  So, in a matter of six weeks, my pancreas had effectively stopped working.  It's not as if I am a Type 2 Diabetic now.  I didn't get this way from being a fat bastard that couldn't control his diet.  We're talking six weeks.  Going from healthy, to daily insulin shots.

My primary physician calls it "Type 3 Diabetes".  It's obviously not Type 2.  It has the same features as Type 1.  It appears to be an autoimmune response.  But, Type 1 initially appears in juvenile patients only.  That being said, I don't have Type 1.  So, I have "Type 3", or maybe "Type 1B".

Oh, and get this:  I found out, when I checked into the hospital two weeks ago, that since December of last year, I've lost 50 lbs. (I've lost 10 more since then.)  I haven't changed my diet at all.  I haven't exercised.  I'm still taking in just as many calories as I did four months ago.  I haven't weighed this much since I was a junior in high school.  Don't get me wrong.  I needed to lose the weight anyway, but to lose it so quickly, without trying, is a little scary.

So while I'm in the hospital (the first time), I have an EEG (brain scan), a CAT scan, and 6 hours inside an MRI.  They get a full workup of my brain and head, my neck, and my complete spine.  They find absolutely nothing to explain what would make me collapse.  What they did find out was pretty remarkable, though.  The normal brain on an MRI looks like this:

I found out that I have what is called a Chiari Malformation.  That means that the way my brain grew in my skull, the tonsils, or the little nubs on the bottom of my cerebellum hang down below my skull.  Mine actually rest on my spine.  It may explain why I have migraines as often as I do, as well as constant pain in the base of my skull.  Here is a picture of an MRI of someone with a Chiari Malformation.  THIS IS NOT MY MRI.

My brain is a little abnormal.  It doesn't sit straight in my skull.  It's slanted back.  It's the creepiest thing.  If I can figure out how to break the copyright encryption on the imaging DVD, I'll post some pics of my images.  I also found out that I have either 6 or 7 herniated discs in my back.  Some aren't so bad.  Some are.  The doctor at the hospital said that he's surprised that I'm not complaining of back pain.  There are a couple of herniations that are pressing on my spine.  My spine doesn't curve like it's supposed to.  It's pretty much dead straight.  I have follow up appointments now to determine the seriousness of the herniations, to see if spinal surgery may be needed.  If so, they will have to enter through my breastbone.  From what I have been told, it's pretty gruesome.  Estimated downtime is six months after the procedure.

And now, for something completely different....



(For you 'Big Love' fans out there.  That was Julia Nunes, singing the Beach Boys' 'God Only Knows')

OK.  Moving on.  I was released on Thursday, the 10th, and saw my neurologist the following Monday, the 15th.  He pretty much ruled out Multiple Sclerosis, but wanted to do a couple more tests, just to make sure.  During the neurological exam, he very quietly mentioned ALS to his assistant a couple of times.  ALS is commonly known as Lou Gehrig Disease.  It's fatal.  Usually, from the time you're diagnosed with it, you're dead within 3-6 years.  ALS doesn't show up on an MRI.  It really doesn't show up anywhere.  The only way to diagnose it is to test for everything else, and if everything else comes back negative, ALS is the likely culprit.

Tuesday the 16th, I was OK.  My legs were weak, but I was able to walk fine with the walker that the hospital provided me the week before.  Then at about 2PM, my legs just stopped working.  It was like someone cut the strings off of a marionette.  An hour later, I lost control of my bowels and my bladder.  About two hours after that, the bones in my upper arms became so sore, it felt like someone was trying to dislocate my shoulders.  I had no strength in my upper extremities.  I called my neurologist.  He called me back and said to get admitted immediately at the Mayo Clinic hospital here in Phoenix.

Within a half hour of getting in to the ER at Mayo, they had already drawn 16 vials of blood.  At 2AM, I had a neurologist at my bedside doing an exam and asking me questions.  It was impressive to see a staff like that operating in the middle of the night.  At 8AM every morning, I had a team of 6 neurologists standing at the foot of my bed, discussing their plan for me for the day.

I had more MRIs completed, and an EMG.  Let me tell you, an EMG sucks.  They put little pads on different spots on your arm, hand, leg and foot, then they stick what amounts to a miniature cattle prod up to various points on your body where nerves are supposed to be.  Then they test the speed of that electrical signal.  It hurts like a motherfucker, and your leg is just bouncing across the bed, like you're keeping time to a song in your head.  If that isn't enough, then they stick a two inch long wire into certain muscle groups to check for an electrical signal.  Once the wire is in, you have to relax or flex a specific muscle.  Then they move the wire around until they find the signal they're looking for, like it's an AM radio station that's broadcasting from your thigh.

Last Friday morning was exceptionally noteworthy.  I had two gentlemen from physical therapy come in to work with me.  They brought a pair of three pound dumbbells with them for me to exercise with.  My upper body was so weak, and still is, that they had to exchange them for two pound weights because I couldn't lift the three pound weights over my head.  Then they had me do leg raises while sitting on my bed.  Once I lifted my leg to a particular height with either leg, I would get a jolt of electricity through my leg, and twitch.

They had me stand up and try to march in place.  I started with my left.  First left.  Then right.  Then left again.  As I started to lift my right leg up for the second time, I started to shake.  My whole body went into what I can only describe as a full body stutter.  I couldn't talk.  I couldn't move, other than to keep shaking.  It lasted for more than 45 seconds.  I have had tens of thousands of Tourette's tics over the last five years, and let me tell you, this was not a Tourette's tic.  This was a seizure.

I told the neurologist 20 minutes later when he came in to see me.  He said that it was impossible for me to have a seizure, simply because I did not pass out.  I was conscious during the event.  It was then that I started to get the feeling that Mayo wasn't going to be of much help to me.

A couple of hours later, a neurologist came in and told me that I was going to be released.  They told me that I had no nerve damage, and, that I was being diagnosed with a "movement disorder".  NO SHIT.  They couldn't tell me what brought on said "movement disorder", but suggested that it may be attributed to recent stress.  Keep in mind, I still can't walk.  My upper body is still so weak, that I have to lay back and rest after reading the newspaper for five minutes or so.  And the whole bladder/bowel thing?  It's still a little sketchy.  The neurologist, a condescending, mid twenty-something, holier than thou bitch, actually had the balls to suggest that I see my therapist (my psychologist) once a week to try to get my legs working again.  She also is scheduling me for physical therapy three times a week, which I can't afford.  What I don't understand is this:  If this is a movement disorder, in the same spectrum as my Tourette's Syndrome, of what benefit would physical therapy be?  Physical therapy can't fix my Tourette's.  How can it fix this?  It's not a problem with my muscles.

In the course of our conversation, the neurologist said, "You're fine as far as we can tell".  I replied, "I can't fucking walk".  She said, "Well, you can with a walker".

They gave up on me.  I wasn't bleeding.  I wasn't dieing.  They did a series of blood work, an hour of MRIs, and an EMG.  From the moment I walked in, they had originally thought I had a condition called Guillain-Barre Syndrome.  When tests turned out that I didn't, they let me go.  This is one of the most respected hospitals in the nation.  People come here from all around the world specifically just to be treated at this facility because of their reputation.  I would have rather gone back to the hospital I was originally at.


So,  I'm home now.  I still can't walk.  I started having convulsions yesterday.  I called MY neurologist yesterday for further instructions.  He is on vacation until April 4th.  His business partner may see me, or I may be sent to another hospital this week.  He is really good about getting back to me, even when he is out of his office.  He once returned my call from his cell phone when he was in the airport in Lubbock, Texas.  I told you, he's a BAMF.


I would like to thank everyone for their kind words, both on the blog, and on Facebook.  It's nice to know that so many of you are concerned, and you are all strangers.  Thank you so much.  You keep me going some days.

Slow Week From The Daily Twitch

Have you ever had one of those weeks where you have so many things that you want to write about, but life comes along and fucks it all up for you?  Well folks, welcome to my life.

I am currently posting from room number 1215 of a hospital in the greater Phoenix area.  Earlier Monday afternoon, I collapsed a total of 4 times while out with my family.  I didn't pass out, but rather, it was if my legs forgot how to walk.  At the advice of two of my doctors, I came to the ER.  Within two hours, I was admitted.

So far, I have had an EKG, an EEG, and 2 out of a series of 6, hour long planned MRIs on my head, neck, and spine.  Nothing interesting to note.  A couple of strange things to share, though.  My potassium levels were so low, that not only did they have to give me two potassium drips, but they had to follow that up with two separate potassium supplements.

Also, for some reason, when I walked in, my blood sugar was at almost 325.  They have kept me on a diabetic and salt free diet since coming in here.  I've had over a half dozen shots of insulin.  My lowest blood sugar level was just about 15 minutes ago at 195, and that was without so much a glass of water for 6 hours.  My A1C, which tests my average blood sugar for the last three months was 9.7.  9.7 from what I'm hearing is "insulin dependent".  I'm just trying to figure out how the hell things could have changed so fucking fast.

I will try to keep you all posted.   Please keep checking back with The Daily Twitch.  Thanks.