WE ARE NOT MICHAEL BROWN OR TRAYVON MARTIN

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Living With Fibromyalgia

Fibro...What?  How Do You Even Spell That?
So little is known about Fibromyalgia, that the general public doesn't even know how to spell the name of this condition.  Specialists themselves are not quite sure what it is either.  Presently, there are no tests that specifically detect the condition.  So how does it even get diagnosed?  Literally, by the process of elimination.  Specialists try to test you for any and everything from Lupus and Multiple Sclerosis (MS) to Rheumatoid Arthritis (RA).  Through batteries of labs, X-Rays and MRIs, doctors eliminate diseases until there is nothing else left to test for.  Then, you get diagnosed with Fibromyalgia.  Not too reassuring is it?

According to WebMD, Fibromyalgia is a chronic condition which affects about 5.8 million Americans.  The syndrome affects muscles and soft tissue and symptoms may include:

• Chronic muscle pain, muscle spasms or tightness
• Moderate or severe fatigue and decreased energy
• Insomnia or waking up feeling just as tired as when you went to sleep
• Stiffness upon waking or after staying in one position for too long
• Difficulty remembering, concentrating, and performing simple mental tasks ("fibro fog")
• Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
• Tension or migraine headaches
• Jaw and facial tenderness
• Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
• Feeling anxious or depressed
• Numbness or tingling in the face, arms, hands, legs, or feet
• Increase in urinary urgency or frequency (irritable bladder)
• Reduced tolerance for exercise and muscle pain after exercise
• A feeling of swelling (without actual swelling) in the hands and feet

In my case, everything hurts, everywhere and all of the time.  The VA Clinic Rheumatologists and Neurologists both agree I may be one of the most severe cases they have seen.  Not to mention the youngest.  Which raises a whole other set of considerations.  My symptoms include:

• Joint pain and discomfort and decreased range of motion
• All joints in my body ache.  
• Finger knuckles ache making hands feel arthritic.  
• Pain in wrists reminiscent of that of Carpal Tunnel Syndrome.
• Elbows at times "lock" along with elevated pain levels.
• Hip joints pain is aggravated with increased motion.
• Knees at times "lock" along with increased pain levels are worsened with increased activity.
• Ankle pains reminiscent of "rolled ankles" increase with longer walking distances. 
• Chronic muscle pain, muscle spasms, tightness and weakness  
• Back and neck pains runs down  the entire length of the spine.  Burning, throbbing and stabbing pain worsened by activity levels and pressure.  I am unable to sleep on my back because of the burning sensation.  
• Muscle spasms on neck and trapezoids are severe and pronounced.  They are aggravated by stress and activity levels.
• Tightness and weakness of muscles cause need for walking cane for stabilization and support for short distances and wheelchair or scooter for long distances.
• Moderate to severe fatigue and decreased energy
• Exhaustion levels are worsened by activity levels.  It is worse in the mornings and gets slightly better towards the end of the day.
• Insomnia or waking up feeling just as tired as when you went to sleep
• Although I may be tired, aches and pains combined with the inability to "shut down" my brain keep my up until well past midnight on a daily basis.
• Stiffness upon waking or after staying in one position for too long
• Which conflicts with your body telling you you shouldn't be moving because activity worsens pain. 
• Difficulty remembering, concentrating, and performing simple mental tasks ("fibro fog")
• I find myself asking people to repeat themselves, completely skip over some of the things people say and have an even shorter short-term memory than usual.
• Tension or migraine headaches
• Begins with pressure behind the eyes. 
• Sensitivity to bright lights and medications
• Light sensitivity worsens eye pressure and pain levels.
• Aversion to certain pain medication causes drastic increases in fatigue levels as well as nausea, vertigo, cold sweats and the shakes.
• Moments of irritability and short temper
• After all, who can be in a good mood 24/7 when in this much annoying pain?  I would not consider myself depressed as I have plenty of joy, blessings and beauty surrounding me every day.  However, I am only human and there are times when the pain is a bit too much to handle.  The wondering if there ever is an end to the pain in sight can hit you hard at times.  Anyone would be upset once in a while about being in that situation so it surely does not warrant a Depression diagnosis.
• Numbness and tingling with pain in the arms, hands, legs and feet
• Makes it very uncomfortable to type and use touchscreen electronics.
• Reduced tolerance for exercise and muscle pain after exercise
• A feeling of swelling (without actual swelling) in the hands and feet

Now, anyone can go online and look up a list of symptoms to try to understand what is either going on with their bodies or what is going on with their loved ones.  The honest truth is that all cases are different.  Some people may have some symptoms and not others.  Severity levels vary and may be aggravated by different factors and activities.

I can imagine that just like myself, other Fibromyalgia patients have days on which they struggle with coping with this condition.

At this time, I am a 34 year old Marine veteran.  I have lead a life full of athletic performances and perhaps a few adrenaline junkie situations.  Never in my wildest dreams would I had imagined hitting this brick wall.

Fibromyalgia brought me to a full stop.  No more running daily, no more hundreds of crunches, no more soccer, rollerblading or even walking unassisted.  The active lifestyle of the former JV and Varsity high school soccer team captain, college scrimmage pick-up soccer game player and U.S. Marine Corps squad leader was over.  It took a lot not to let the situation escalate out of control.  Had it not been for Christianity and my supportive and loving wife and my wonderful child, I know I would not be where I am today.

It is quite easy to see how some Fibromyalgia patients dive head-first into depression.  I mean, think about it.  With this condition, you are damned if you do, and you are damned if you  don't.  If you choose to rest, you are in pain.  If you choose to move about, you are still in pain and risk being in even more pain.  Your best bet is to try and shoot for the middle, all the while wondering if it is ever going to get better, easier or less painful.  It is better to be in pain and being proud of having achieved something or having gone somewhere, than to be in pain bedridden and depressed.  So get up and do something.  You are going to be in pain anyways.  Why not enjoy yourself while you still can?  Chances are you might get an hour or two of enjoyment, if you are lucky, before you have to be carried off in a stretcher.

You ache all of the time, no matter what you do or what you take.  Such is my state that I no longer care if I get hurt since pain is as constant as breathing.  I would probably be the worst torture subject as the fear of future pain is long gone.  What's a little more pain? Bring it!  So go figure, living with fibromyalgia, despite slowing me down actually helped me become fearless.  

My advise to those suffering form this condition is to live for the small victories.  One thing at a time and take your sweet time.



    

To Join Or Not To Join...THAT Is The Question.

Most Veterans can tell you, one of the questions they get asked most frequently is "Why did you join?".  Practically every Veteran has their distinct reason.  Some are perhaps more patriotic that others.  For me, the reason was a bit more morbid and a bit less patriotic.  Reasons set aside and hindsight being 20/20, most people who join the service do not always have some of the tidbits of information I had to learn the good old hard way.

At the time, I was a wet-nosed 19 year old college student.  After having worked for 2 years, 2 and sometimes 3 part-time jobs while attending Business School full-time, a careless driver forced me to take a month off work and school.  Months flew by and resumes were distributed like flyers being passed out by a Camping follower on May 20th.  Still, no job and worse, no school.  I simply refused to mooch off my brothers, but what was I to do?  I resorted to minimalistic survival, eating as little as possible, turning off all lights and unplugging every appliance in the house.  My only sinful delights were surfing the internet looking for jobs and the occasional Jerry Springer episode.  Back then, Jerry was probably the only interesting thing for a 19 year old to watch.

One day, my younger brother came to me asking for my opinion.  He asked I sit with him and a Marine recruiter as he was considering having the military pay for Med School.  After finding out he had to put his education on hold for 4 years before the military would pay for his schooling, the idea suddenly didn't sound as hot as he'd thought.  He already had a very good job as a medical assistant to a prominent Dermatologist at a top Miami hospital.  Quitting just made no sense.    On the other hand, it made perfect sense for me.  Having been unemployed for several months, with stacks of bills compounding exponentially, the U.S. Marine Corps was going to be a great addition to my meager resume.  More importantly, were I to die in combat, all of my family's bills would have been taken care of including paying off the family home.  That was one legacy I actually felt proud to fulfill.  So on a dark and cold morning, before the crack of dawn, I was on a bus making a B-line to Parris Island, SC.

When my brother asked me "Why the Marines?  Why not the Air Force?", my 19 year old response was "Hey, if I ever go to combat, I want to be trained by the best.  That and think about the girls I'll hook up with wearing the Marine Dress Blues!".  Go figure.  Following are a few of the things I wish I would have truly thought over.  Not to say that I ever regretted joining the Corps.  Semper Fi 'til I die.  Ooh Rahh!

I did not take into consideration the type of training I would be receiving and how it would carry on to the civilian world.  Unless you want to become a soldier of fortune or police SWAT, there really is not much use for Infantryman outside of the military.  I did not take into account what kind of income I would be earning with such training.  I also did not take into account enlistment and reenlistment bonuses.  I just wanted to get my hands on those Marine Dress Blues!

Life Outside Military Life
Most recruits fail to consider that life does go on while they are in training, regardless of whether you are Active Duty or Reservist.  Boyfriends and Girlfriends move on and send their Dear Jane and Dear John letters or emails (with the exception of the very outstanding few), good friends continue to party and build new and stronger friendships, creditors continue to charge finance fees and the world keeps spinning right round, baby right round, like a record baby, right round, round, round.  Chances are, whatever most recruits left behind will not smell so fresh when they get back.  Friendships may become stale and outdated, and bills will stink up the building.  Heed my warning.  Come time to ship out, creditors do not care that you will be unavailable for months while serving the country.  They want their money and they want it now!  If you value your present life, more than you value your reason for joining the service, shipping out may not be the best of ideas.

Life During Military Life
The military is unlike anything most people have experienced.  For starters, during boot camp, Drill Instructors scream at you point-blank on a daily basis.  Sometimes, they have little control over their spit glands and/or the occasional chronic bad breath.  If you are a token "bad boy", you find out real quick that mouthing off to a Drill Instructor leads to Drill Instructor Surround Sound.  That is 3 more Drill Instructors joining in on the screaming and involuntary spitting happy-time on all sides of a recruit's head.

Relationships in the military are practically bound to fail.  I found the best policy is to be single when you go in.  I witnessed too many relationships stressed by distance and worse, forgotten until the weekly phone call.    Unlike Las Vegas, what happens in the military does not stay in the military.  Just ask my nameless friend who has to raise 3 kids and manage a devastating STD because of the infidelity of her ex-husband while on deployment.  For those who do not have the luxury of going single, my suggestion is to find their closest Bible.  Having someone else there to hold you accountable does seem to help a lot.

Here is one of my best kept secrets...Boot Camp is one big mind game.  The Drill Instructors are there to rebuild those who need rebuilding and to reinforce those who need reinforcement.  If every time they say "Jump", you keep jumping until your legs buckle, then keep jumping even if its only a millimeter off the ground, you will do just fine.  Every time I got sent to "the pit", I carried out every command as efficiently and as fast as I could.  I worked out so hard that Drill Instructors had no choice but to let me out before I burnt myself out.

Life After Military Life
Here is where it gets a bit uncomfortable for some people.  However, it is probably the most important point of this entire elongated rant...If you are lucky enough to have made it out alive, now you have to deal with civilian life and the Department Of Veterans Affairs (VA).  Just because a devildog, soldier, sailor or airman returns with all of their limbs, does not mean they do not have an incapacitating condition.  Having a severe condition may come from multiple sources including chemical agents, psychological trauma or simply repeated trauma.  Dealing with any of these is hard enough to deal with on ones own.  Not to even mention coming back with missing limbs...that is an whole other blog subject.  Sometimes, dealing with a Veteran's condition comes harder for that Veteran's loved ones.  Whether it be a sibling living in another country who doesn't get to see you often or even the spouse who sees you on a daily basis.  Both tend to have a tough time coping with a vet's disabilities.

It is very hard for those who were not there to see the reasoning behind the sacrifice.  Even if they do relate to the reason, it still does not make it any easier to accept that it had to happen to their loved ones.  As a disabled Veteran, how do you help those around you learn to live with what has happened to you?  That my friends is a question whose answer is not as rosy as one would like.  Well, it starts with patience.  And that goes to both sides of the equation.  The Veteran needs to have patience with his loved ones AND himself just as much as his loved ones need to have patience with the ailing Vet AND themselves.  What do I mean by this?  Simply put, the Vet needs to learn to live the drastically different life he now has to lead.  Maybe this means the end of weekend pick-up soccer games.  Maybe it means no more mountain biking or kayaking.  The Vet needs to figure out how to now lead his new life and still get some satisfaction out of it.  This can become a daily struggle on its own.  Family members on the other hand, need to readjust their way of thinking.  The Vet may not be able to participate in as many daily activities as before, which at times may lead to a feeling of resentment.  These and many other topics remain to be discussed in detail in future blog topics.

Although I do give props to the VA for dealing with the hundreds of thousands of Veterans, much is left to be desired.    One thing I have learned from my past 10+ years of dealing with the VA is that they will deny any claim without hesitation.  I came to learn from a very seasoned VA Service Rep that the VA's performance measures for handling claims is not determined by the number of cases they successfully complete, but the number of times they touch a case.  Meaning, they can deny any one particular claim as many as 3 times, sometimes without merit, until it goes to the Review Board.  Once there, when the file is reviewed and found to be a valid claim, it is sent back to the VA for approval.  This means that the VA performance measures count 4 successful case handlings (5 once they approve the claim they knew all along would be approved) for the 1 valid claim.  When the numbers are reported, they mislead reviewers to think that more Veterans have been helped than in actuality.

The rule of thumb when dealing with the VA is the following:  Just because you served in the military and have documented injuries resulting from such service, does not mean that the VA has access to your medical records.  This is something I wish someone would have made me aware of when I was denied Service Connection for the first 3 years after my Honorable Discharge.  Be sure to have copies of all documented injuries and send them along with your VA application.  Do not assume that the VA should have access to your military medical records.  Also, when fighting the VA, you do have some resources.  Contact your local State Representative.  A congressional inquiry happens to have much faster results than multiple calls to the VA's 1-800 number, which happens to be outsourced to a call center company, not the Department Of Veterans Affairs.  

As you can see, coming home in one peace may be the best case scenario, but that still doesn't mean it is smooth sailing from that point on.  Please do not get me wrong.  I am by no means proclaiming that service to your country should not be considered.  Simply put, there is more to think about that how awesome you will look in that uniform.  Come to think of it, the uniform took a whole new meaning once I had earned the right to wear it.  It no longer was a method of attracting girls.  It became the embodiment of sacrifice, pride, honor and commitment.