Saturday, September 10, 2016

I Have CRPS, NOT "RSD:" Why I Refuse to Use "RSD" & Question Those Who Do

I’ve been often asked why I refuse to use “RSD” when talking about my CRPS or why the term bothers me so much. Yes, I cringe every time someone mentions RSD as if it is still around.  But I have very good reasons for doing so and this is why. 

MYTH: CRPS is also known as “RSD,” “CRPS/RSD” and “RSD/CRPS”
(Partially True, yet equally misleading: CRPS formerly known as RSD)

WARNING!  This issue is VERY controversial.  I’ve actually received “hate mail” for this one due to the strong opinions and feelings on this.

 To understand, you have to know the history of CRPS. 

Reflex Sympathetic Dystrophy (RSD) was among SEVERAL conditions that became Complex Regional Pain Syndrome (CRPS) in the early 1990’s.  Reason being, RSD affects the Reflex Nervous System which is only part of the Peripheral Nervous System while CRPS has been proven to affect both the Central & Peripheral Systems.  RSD only describes a select group of symptoms in the later stages of CRPS.  Other conditions that became CRPS include:  Causalgia, Failed Back Surgery Syndrome (FBSS), Regional Pain Disorder (RPD), Chronic Pain Disorder, etc.  All of which can exhibit different symptoms while overlapping others. 

By the old definitions, someone with Causalgia would not necessarily have the same symptoms or treatment plan of someone who was diagnosed with RSD.  If a doctor is treating only RSD, they are missing many other symptoms and, in turn, treatment options.

So why is the term “RSD” still being used?  This one is driven primarily by special interest groups and doctors who aren’t up to date on their education.  It’s sad, but doctors actually look up conditions that they’re not familiar with on the internet and medical networks.  Since little is known about CRPS, this means that special interest group websites “pop up” first on their search.  RSD has been around for a long time, so all the outdated information is still there.  Even support groups refuse to drop “RSD” and have actually incorporated it into their sites as “RSD/CRPS.”   That simply isn’t true.  That’s like referring to the flu as just a runny nose or “Runny Nose/Flu.”

With new information finally coming out thanks to CRPS awareness efforts, many sites are finally starting to reflect that CRPS was formerly known as RSD.  Again, that’s only a partial truth.  While RSD does describe a set group of symptoms and causes in Type I CRPS, it doesn’t, however describe them all.

You’re probably wondering then, how can a name cause so much trouble? Simple.  If a site is based on information dedicated to RSD and the symptoms included with it, a person who is not symptomatic of RSD (but actually has CRPS) may be driven away and left to suffer on their own. 

I was one of them.  I was diagnosed originally with Causalgia, FBSS and Regional Pain Disorder stemming from a spinal cord & shoulder injury.  I was actually told that I do not have RSD because of those conditions when in fact, they were ALL CRPS.  I just didn’t have the symptoms of RSD including the hot flares, color changing skin, etc. and my pain affected multiple parts of my body, not just the injured areas.  I did later develop those conditions as a result of my CRPS going improperly treated for so long.     

I finally found a doctor who put all the puzzle pieces together and informed me about CRPS. 

Unfortunately, it took longer to find an online support group.  I would share my story, seeking information, and would often be told: “it doesn’t sound like you have RSD,” or “those treatments are wrong for your RSD/CRPS.”

Well….DUH! I never had RSD.  I’m not symptomatic of RSD.  My doctor is NOT treating RSD.  I will NEVER have RSD.  Treatments for RSD, like Ketamine Infusions, actually make my condition worse! It may work for some people, but given my symptoms, my treatment has to be different.

Now some sites still have RSD in their name because they’ve been around before it became CRPS.  For whatever reasons, still have not changed their names to reflect that or are holding on to the name due to financial reasons (ie: cost of changing domain name, cost of rebranding organization including copyrites).  At first, some groups held on to RSD because CRPS was new and older patients would recognize them.  But, it’s been over 20 years and now it’s negatively new patients who desperately need help.    

I often heard from other patients that they’ll use RSD when talking to doctors because CRPS sounds like a psychological condition or mental disorder.  Or worse, their doctors believe CRPS is a psychological condition and that RSD is not. Yes, it is true that some doctors still believe CRPS  is psychological, but my question to those would be:  Why are you still using that doctor when they clearly aren’t up to date on their education? 

I have serious concerns with ANY doctor who uses RSD (or any of the old outdated terms for that matter) when describing or treating my condition. I actually have switched pain doctors over that issue because I wasn’t getting the quality treatment I deserve.  Do I really want someone treating me based on information that’s over 20 years old? Not a chance.   

As a community of CRPS patients, we need to work together and put old, outdated information behind us and help bring the medical community up to date. There are so many people out there who have CRPS and need help, yet they don’t know how because of issues like this.   

Honestly, this is one tough issue.  I’ve seen online arguments over it as people hold on tightly to something their familiar with, even when it becomes obsolete.  We need to help each other and understand that we’re in this together.  Just because one person’s symptoms may not match yours, doesn’t mean that they don’t have CRPS or that they’re suffering any less.  The last thing we need to do is to push away people who need help over an outdated condition.

My challenge to you all is to drop “RSD” and help all CRPS patients, no matter what symptoms they have or why type of CRPS they fall under.  Instead of focusing on one, small part of CRPS, we can learn from it all and finally move forward to better treatment and maybe a cure.     

Thursday, December 24, 2015

Finding Christmas

Often times, people get so caught up in buying the "perfect gift" for someone when often times, all they need is a simple act of kindness to brighten their day.

Year after year, people line up for hours outside of stores, max out credit cards and put themselves through so much unneeded stress in the name of Christmas.

But that's not what Christmas is about.  Have we truly forgotten what the Christmas spirit is?

What about spending time with our loved ones? What about helping out the less fortunate?  What about holding on to our family traditions? What about spreading good cheer? Where has it all gone?

Every year, it saddens me to see people fighting over who gets the best gift or how many gifts one receives.  To me, that's not love and it is definitely not the Christmas spirit.

Whether you believe in faith or not, we need to all work together to bring good cheer to all so that we may live in happiness and peace.

If you don't celebrate Christmas, I welcome any holiday greeting of your choosing and I look forward to learning more about your traditions!

If you don't have any belief, please accept my "Merry Christmas" as a greeting of good will and well wishes for you and your family!  That's all I wish for!    

From my traditions & faith, Merry Christmas!

Did you know that years ago, I wrote a short story called "Finding Christmas" for a contest which lead to this song? The story may be long gone, but the song is still here! Enjoy!

Wednesday, November 4, 2015

So, what is CRPS?

November is CRPS Awareness Month! As many of you know, I had been diagnosed with CRPS in 2012 after my accident.  It's the main reason why I'm the cyborg I am today!  My Spinal Cord Stimulator helps manage my pain on a daily long as I remember to charge my batteries! ;-)

Please help by showing your support and wearing orange during November!  I would love to see pics and I know I won't be the only one.  You can share them with me at:

Be sure to tag them with: #CRPSAwarenessMonth #PaintTheWorldOrange and/or #CRPS

Again, thank you all for your continued support! 

Complex Regional Pain Syndrome (CRPS)

CRPS is a Neurological Disorder stemming from injury-related Chronic Pain, affecting thousands of Americans each year. CRPS is believed to be caused by damage and/or malfunction of the central & peripheral nervous symptoms which disrupts the signals between the brain and spinal cord. In severe cases, CRPS can spread to internal organs and cause them to malfunction.

Symptoms include severe pain; joint stiffness; problems coordinating muscle movement; muscle atrophy; tremors; muscle spasms; limb buckling; hypersensitivity to light, sound, heat, cold & vibrations; significant skin temperature changes; decreased mobility; fatigue; difficulty concentrating; short-term memory issues; etc.

Long term sufferers often develop other related conditions including depression; anxiety; post traumatic stress; cardiovascular issues; Postural Orthostatic Tachycardia Syndrome (POTS); Fibromyalgia; chronic migraines; and are considered high risk for heart attack & stroke. In combination with the primary symptoms and lack of proper care, early death is expected.

CRPS can be manageable with proper care & treatment, but there is no cure and care is often unattainable or unknown by many doctors who lack the current research and developments in treatment protocols. Awareness & more research are much needed.   

“Fire & Ice”

People who are diagnosed with CRPS suffer from triggered “Flare Up’s” or “Attack’s” which can occur frequently and are debilitating. These attacks usually begin with a change in temperature of an affected limb or region, followed by severe pain that can last days. 

For example, a person will experience an ice cold foot, followed by severe pain when trying to warm it. The opposite occurs where an area becomes warm to touch, followed by severe pain when attempting to cool it, let alone, touching the affected area.   

The pain can be so severe, that doctors often consider amputation of the affected limb. 

According to the national McGill Pain Index, CRPS ranks near the top at 42; almost double the pain levels of child birth & loss of limb.

CRPS Awareness is represented in multiple ways with many patients choosing Orange & Blue as it portrays their daily battle with hot & cold flare ups.  Patients refer to it as the battle of fire & ice as they fight both the burning sensations of hot flare ups and not being able to warm up without severe pain during a cold flare up.

November is National CRPS Awareness Month and patients & supporters are encouraged to paint the world orange to spread awareness of this “invisible illness.” 

Thank you for your continued support and showing those who are afflicted that they are not alone in their fight.  

Monday, April 27, 2015

"Beautiful Shadows"

This one has been the works for a while and it has been the most requested blog! LOL Better late than never, I guess! ;-)

Many now have seen my music video for Beautiful Shadow's & I often hear, "It's so emotional, what's it about?"

Well, that's a complex answer.  In the beginning, it started off as a goofy little melody I made to cheer up a great friend of mine.  My friend had been going through a rough patch and was in need of distraction, so this melody came into being.  It was just the right amount of "goofy" and had to be written down.  So, I grabbed my famous blue song book & jotted down the melody, thinking that one day we would look back at it and laugh.

Time passed.  Days turned into weeks, weeks turned into months, and months eventually became years.  I regrettably lost contact with my friend as I had my accident.  I didn't want anyone to see me in that condition, sitting in a wheel chair, struggling in a walker, withering away in pain.  I was ashamed & embarrassed.  (That was a mistake that I still regret to this day.)

One day, shortly after we moved, I found my blue songbook.  As I was going through the pages, I found the melody and couldn't remember for the life of me what the song was about.  So, I sat behind old piano and played out the melody.

To my surprise, hearing that song reminded me of everything that happened that night I wrote it! But, it made me miss my friend.  Over the next few days, I found some new motivation for the melody and it became a full song.  I played it for others, including a piano student of mine who then encouraged me to record it.

I couldn't just do that.  I really didn't feel right about producing it without the permission of the person it was intended for.  Up until this point, I would get an occasional text or message, but I felt like I was a stranger all over again.

So, I told everyone that I would only record it if I had permission, thinking that I would never hear anything back or get an "I don't remember it" response.  Case closed, no recording, nothing to worry about, right? Wrong.

My friend responded fast and knew exactly what night I was talking about!  As to my question about receiving permission to record it, I publicly got this:  "#youbetter"

You better? That couldn't be more perfect motivation from someone who knows me so well, despite our time apart! I was now obligated to with my dignity on the line! So, that conversation turned into this:

But what does Beautiful Shadow's mean? Aren't shadows usually dark & scary? How can they be beautiful?

Easy.  Shadows can only exist where there is light.  It means that someone is shining so bright, that everywhere around them, shadows are being cast of all the people who share in that light.  Be it friends, family, supporters or even a random person who smiled & made your day.  Those.  Those are beautiful shadows.  That was my friend who overcame so much to shine so brightly.

Think of it this way, remember when you were kids? Remember when you and your friends used to make shadow figures on the wall using a flashlight or turned-over lamp? It was simple, yet fun.  That's what Beautiful Shadow's is all about! It starts off with that simple goofy little melody (after some cleaning up & sustain) and builds into something grand.

Then there's the bridge part, where everything seems tense to the point where the song breaks & nearly turns silent. You're left with a quiet version of the chorus, almost haunting what was once so grand.  That's what happens in life when things get too complicated.  Things become so difficult that you just shut down like I did after my accident. You can still hear the echo of what things used to be, quietly haunting us.

But at the same time, it reminds you of how everything was so simple in the beginning.  When you realize that things aren't so complicated, everything becomes better & the chorus hits you again in full force with a little extra something!

As the song winds down, it serves as a reminder that sometimes you have to return to the simpler things in life to get the best out of it.  You can be the brightest light out there, but you need those who support you, casting their own beautiful shadows.  Without them, you'll burn out and disappear.

Dedicated to my friend, thanks for not letting me disappear & I'm proud of you!

What's coming up for "Beautiful Shadow's?"

Beautiful Shadow's is getting a studio make over!  .....but that's all I can say about it now as things are in the works that are "sensitive" in nature and have to be kept under wraps in order to hopefully happen! As soon as I can tell you all (fingers crossed!), you'll be the 2nd to know! After my friend, of course!


Sunday, April 19, 2015

The Tale of 2 Life Changing Events

August, 1998:  Age Group Swim Invite

I just finished stretching & warming up.  I had "Lightning Crashes" playing on my diskman (yes, you read that right, I said diskman) to calm my nerves all while pacing the deck.  I don't usually swim the 100 free, but we needed the points and we were a man down due to illness.  If I could at least snatch 3rd, we could keep up the pressure and give us a chance to take the meet.  After pacing anxiously for several minutes, we got the call for the final heat.  I had lane 2 placement due to the fact that I haven't logged any times in that event earlier in the year.  When I reached my starting block, I noticed who had lane old nemesis from my power event in the 100 back.  In swimming, lane 4 is reserved for the top seed.  He had somehow beaten me out this year for the 100 back and I was left with lane 3.  My blood was boiling! Swimmers to your block. Take you mark.  BANG! I couldn't have asked for a smoother entry.  In short distance sprints, it's all about breathing and control.  For the 100 free, you only take one breath if necessary.  Anything else can throw your rhythm off and slow you down.  I couldn't do it.  I had to take two breaths for 4 pool lengths.  I powered through as much as I can and to my surprise, I was neck & neck with the leader despite being in lane 2.  .....must have been adrenaline.  During the last length, my lungs felt like they were on fire.  I had to take another breath.  The second I did that, the leader kicked on the afterburners and left me behind. When I hit the wall, to my surprise I had a new personal best of 53.44 and finished 2nd!  Apparently, they pulled their #2 seed for another event, thinking they would take more points. You'd think that I'd be happy, but you'd be wrong.  I was pissed.  One stupid little breath. It didn't matter that the 1st place finish was in the mid 40's & crushed me.  One stupid little breath.  I did take revenge in the 100 back with nearly a 2 second lead win, but I just kept thinking, One stupid little breath.  For the next several weeks, I trained harder than ever to keep my breathing under control.  Every practice, my lungs felt like they wanted to explode.  I needed more lung capacity.  I eventually got it, but it was a lot of work.  I actually maintained it through college too.  Little did I know, it would come back around when I needed it the most.

October, 2010:  Work "Light Duty" post 2008 Accident & Unaware of Spine Injury

The pain in my neck, shoulder and back had not gone away since the accident and I felt like I was getting worse.  My employer kept piling on new work that was very repetitive and physical.  Yes, it was against all of my restrictions.  I found myself again pacing up and down the hallway near my post.  I couldn't shake the pain.  It felt like I had a knife embedded in the middle of my back.  Sometimes walking helps it or at least keeps me from thinking about it.  Today was different.  I had been put on a task that required a lot of twisting and it made me feel way worse. After arguing with my "supervisor," he finally pulled me off the task after I threatened to go to HR.  He thought he was a doctor & could interpret my restrictions as he saw fit.  Yeah, that won't go over well with corporate.  An hour passed and the pain didn't stop.  In fact, it only seemed to get worse.  I started to lean against the wall for some relief, but it didn't give me much.  My "supervisor" passed me and said, "don't you have some work to do?"  I bit my tongue as I had some choice words for him.  Things just got worse.  I started getting light-headed and I was having trouble breathing.  I couldn't inhale or exhale without great difficulty.  I slunk down onto the ground and my "supervisor" passed again.  This time, he said "how does a dislocated shoulder hurt your back," and then walked away while I was on the ground.  I started to feel a blackout coming and seeing those "spots" everyone hears about.  It felt like I was being bear-hugged by the terminator.  Just one stupid little breath.  That's all I need. One stupid little breath.  I forced as much air into my lungs as possible when a different supervisor saw me hit the ground.  He must have called 911 because when I opened my eyes again, I was on a gurney, being taken into an ambulance while the paramedic was using that great big blue bag to force oxygen into me.  After a series of tests and medications, I was able to breath on my own again.  We later found out that my core muscles spasmed so much that they pretty much choked me out.  Also, my diaphragm had been compromised due to nerve damage in the thoracic spine area.  OH, I had also broken my back in 2 different spots in the earlier accident and it was healing wrong all while having 2 fully ruptured disks in the same area! .....nice to find out, it only took them 2 years.  It was at that point, I fully ditched the company doctors and found a good attorney.  The new doctors were appalled that no one checked my thoracic spine injury after an accident like mine and even more appalled that the company doctor who was treating me was not qualified to.  He could stitch someone up & treat soft tissue injuries, but that's it.  He should not have been handling me and he should have known better.  So much for the Hippocratic Oath doctors take.

Just one stupid little breathe.  It drove me to better myself after costing me a race.  Then it saved my life when I needed it the most.  The ER doctor explained that if my lung capacity had not been that good, I may not have made it to the hospital when considering the time the call was made and when the ambulance arrived.  If it wasn't for that one stupid little breath, I would have died there of asphyxiation.

You often hear the saying, "why put off tomorrow, what you can do today." Well, I have a different take on that.  I don't know what tomorrow holds for me.  I may be back in a wheel chair, I may be back in the hospital, I may even find myself on the ground again, fighting for that one stupid little breath with no one to help me.  I'm going to push myself no matter how much pain I'm in or how much I "don't want to." Why?  If I don't push myself today, I may not be able to tomorrow.

Just one stupid little breath.            

Thursday, April 16, 2015

Define Insanity...

I've often heard that sometimes you can lose your mind when dealing with a disability or severe injury.  One minute, you're working hard for a living and doing everything you can to balance happiness and sustainability and in the time it takes for your heart to beat, you're lost and everything you've ever known has changed.

Pain can do a number on your head, that's for sure.  You want to be out and about, but you're stuck inside with pain anchoring you down.

I've never been afraid of pain or let it stop me before, that how I knew "this" pain was different.  Remember, I was the kid who cut off his own cast 2 weeks after breaking an arm because it slowed me down from running to the park.  Ironically enough, the same place where I broke my arm.

It hurt to breath, it hurt to move, it hurt to look at something, it hurt to even hurt to think.  All I could do was curl into a ball and wish it away.

As I came to, my defensive instincts just kicked in.  I tried to reach for my side arm, thinking I had been shot.  After all, if felt like it and it happened to another coworker recently.  The problem was, I didn't know where my right arm was until the on-location staff helped me up and I heard 3, very loud pops that hurt like hell.

Somehow, I managed to get back up & make my way back to my partner with around 20-30 pounds of body armor and gear still on my body.

According to my partner, I made the now famous statement, "I'm okay, just got the breathe knocked out of me. Let's move on."

Move on? Yeah, wasn't happening.  I didn't know it, but my right arm & shoulder were completely mangled and out of place.  She saw that and immediately rushed me to the nearest medical facility.

Sound insane yet? That's the easy stuff.  Even in my current condition, being confined to my bed on bad days, not being able to work, let alone live my life the way I want to, even all that, there's a crazier piece to it all.

That's the medical.

Initial Diagnosis:  Inverted shoulder separation, concussion, whiplash symptoms, contusions to ribs, triceps area, hip, upper thigh, right temple, with possibility of broken bones. Unable to tell at this time due to major inflammation.

That was just the "company doctors." They completely missed the spine injury and severely underestimated the amount of damage that was done to my shoulder.

Over the next two years, when I finally had enough and hired a lawyer.  I went in for a second opinion.  Especially when the pain wasn't going away and their doctor actually had the nerve to accuse me of "faking."

After multiple tests, some still going on today, I finally had some answers.  Because my spine injury wasn't treated in time and began healing wrong, my condition was far worse than it should have been.

Lets try this again, my diagnosis:
Concussion, inverted dislocation of shoulder, torn labrum, torn rotator cuff, ruptured bicep tendon, fractured collar bone, fractured humorous, Brachial Plexus injury, Ulnar Nerve injury, Disk Herniations at C5-C6, T1-T2, T6-T7 (full rupture), T7-T8, 2 fractured ribs, Thoracic spine vertebrae 6 & 7 stress fractured, stress fracture right hip.

......which then led to:
Radiculopathy, neuropathy, Regional Pain Disorder (RPD), Fibromayalgia, Possible Amyotrophic lateral sclerosis (ALS)

......was then updated to:
Complex Regional Pain Syndrome (CRPS), Inappropriate Sinus Tachycardia (IST), Vasovagal Transient Ischemic Attacks (TIA's/mini-strokes),  Postural Orthostatic Tachycardia Syndrome (POTS)

That's not even including the 6 major surgeries and soft tissue damage.

According to my specialists, I'm being watched for POTS & ALS.  Little is known about POTS and there are only 3 doctors in the US that can accurately diagnose it.  I have all the signs of it, though, and if it gets worse, I'm going to have to be put on a 6 month waiting list to see a doctor in Ohio.

I have some of the warning signs of ALS, although it is extremely hard to tell due to the amount of acute damage done to my spine.  After having a mass removed, the symptoms lessened and some disappeared.  I actually regained some nerve function and started gaining muscle mass again.  Thankfully, too, because I was able to slowly work my way out of the wheel chair the doctor wanted me in.

Trust me, you didn't want to be in that room when they told me I was going home in a wheel chair.  It got a bit.....loud. I "refused" and was eventually given a walker which I'm supposed to use, but worked my way to a cane.

Nevertheless, I have to go in for frequent testing for ALS, but so far, so good.  But it sometimes sneaks into the back of my mind.  It's a constant worry for me on top of all the other issues I already have.

Lost yet?? Einstein defined insanity as doing the same thing over & over and expecting the same results.  What happens when you do the same things over & over and get a different result every time?

That's what's really driving me crazy.  It's the fact that I don't have control and don't know how to take control of my life anymore.  Thankfully, I have doctors who are willing to dig to get to the bottom of it all, unlike the previous, company doctors who just wanted me out of their office.

Sometimes, I feel like I'm being studied instead of being treated.  My doctor did tell me that I have one of the rarest spinal cord injuries on record.  Less than 1% of all spine injuries occur in the Thoracic area.  Most injuries are caused to the lumbar or cervical area.  This is because the thoracic spine is protected by the rib cage and is reinforced.

I can handle the cabin fever, depression, changes in lifestyle, stress and everything that comes with a traumatic injury.  It's the damned medical part & not being able to regain control of my life, that I think is insane.  I just wish that there was one answer for my medical condition.

What do you all think is the worst part?      

Wednesday, March 11, 2015

How Living with a Severe Injury Can Be Devastating

Throughout my experience with my condition, I've come across a wide variety of people full of opinions about my life.  Most are sympathetic, but every now and than, I get a few "head-scratcher's."

You know, the type that can't figure out how an injury can keep you down and why doctors won't let you go back to work when you have one of those few good days.

I've even had former supervisors ask me, "can't you just take something and come back in?" I honestly wish it was that simple.  But it was that same mentality from my former employer that made my condition worse.  They were in such a hurry to bring me back to work, the company doctor missed a severe injury to my Thoracic spine which went on to heal wrong, causing all kinds of chaos in my body.  Permanent Nerve Damage, Osteoarthritis, Proprioception Issues, Kyphosis, Regional Pain Disorder, Complex Regional Pain Syndrome, Inappropriate Sinus Tachycardia, Postural Orthostatic Tachycardia, Transient Ischemic Attacks, Stroke; the list goes on and on.

But most people just look at you at face value and see someone who seems fine, despite the use of a cane.  Maybe a little bit slow to move around, but nothing seriously wrong.

They don't understand that you have bad days too.  The type where the pain just gets you.  No matter what you do or try, it erases that day from existence and you know that you'll never get it back.

Those who've had severe injuries or illnesses will understand this.  You try anything in your power not to have a "bad day." Whether it be by distraction, meditation, prayer, stretching, long hot showers, ice baths or whatever means that might possibly work, it sometimes isn't enough.  When that happens, you can't think, let alone move.  Your heart rate increases and you begin to stress, which can lead to far greater problems such as heart attacks or strokes.  You tell the doctor and, of course, they try to increase your medications which just makes you sleep 16 hours a day.  Basically, another day lost regardless.

That's what's devastating to me. It's the time lost that you'll never get back.  I always think about the songs I could have wrote or the time I could have spent with others.  I often get asked about why I bother to force myself to walk or go to the gym when I'm never going to get any better than I am now.  My response is simple.  If I don't try today, I may not be able to tomorrow.

I've learned to appreciate every moment that I'm able to do something because I know a bad day, or even moment for that matter, may just be around the corner.

I still want to live my life on my own terms.  But sometimes, the pain just gets me.  I just make sure I go down swinging and refuse to stay down.

Thanks for all the wonderful support everyone!  Remember.  We're never alone and we STILL control our lifes!