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Syringomyelia and the Cycle of Strife

Syringomyelia Will Not Win© SyrinGoWhat.com, Copyright Protected. Feel free to openly share this link anywhere, but please ask before copying this content or parts of this content elsewhere.

Syringomyelia seems to be a never ending cycle of strife.  What do I mean by that?  Well, what I mean is there seems to be a never ending bitter argument between how I think my body should feel or what it can do and what Syringomyelia thinks.  If I could kick my Syringomyelia’s butt, I would, but I think that might hurt a little since we share the same butt.  🙂

There also seems to be a never ending argument between those of us with Syringomyelia, doctors and other people that don’t understand it.  Actually I really don’t understand it either but I know how it makes me feel. 

Syringomyelia, Wheel Of SymptomsI wake up and it feels like I am in some crazy game show where my body spins a ‘wheel of symptoms’ each morning.  Monday, strange sensations in the legs.  Tuesday, right leg is better than the left.  Wednesday, spasms started and there isn’t an off or undo button.  Thursday seem to be a really good day until I freak’n sneezed and there went the feeling in my toes.  Friday… who cares, it’s FRIDAY!  So this circle of strife just keeps on spinning but I WILL NOT LET SYRINGOMYELIA BEAT ME! 

There are sometimes that I think I can’t win and then God fills my heart full of love or my wife and daughter love on me and POOF, I’m back in the ring to fight the next round.  Each day I’m here, I look for the positives.  Every time there is a new or different symptom, I always try to thank God for all of the many blessings He provides.  Each day I am on this Earth, I win.  Each day I wake, I see my wife and daughter.  Each day I make it through, is another day I’m closer to God’s promise. 

I'm the BOSS over SyringomeliaI will never see eye to eye with this Syringomyelia, especially when it thinks it’s the boss.  I am in control, I just let it think it is.  Syringomyelia and I have something in common though.  In my household, I am the boss but only when my wife lets me.  I wear the pants in the family, mainly because my wife doesn’t like wearing pants.  Ha!

All joking aside, know that you are in control of your own outlook on life.  Syringomyelia will try to persuade you to a more negative aspect but just tell it to kiss your butt.  You got this!!!  I got this!!!  We got this!!!  Say it loud… say it proud… SYRINGOMYELIA!!!  YOU WILL NOT BEAT ME!!!

To all of you, I pray that you have increased or continued strength, better health and blessings every day.

Isaiah 41:10 NIV fear not, for I am with you;  be not dismayed, for I am your God; I will strengthen you, I will help you,  I will uphold you with my righteous right hand.

Please feel free to send me your thoughts or more resource links using my contact page.   Peace, Love, Pancakes… — Michael Doc Davis (SyrinGoWhat.com), fellow Syringomyelian

Syringomyelia – He Said, She Said

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With Syringomyelia, there are two sides to every story.  The side of the person suffering from the disease and the person suffering that feels like they are unable to help.

When I met the love of my life, I thought I had Syringomyelia under control.  This seems to not be the case and it has become harder for my wife and I to accept.

The purpose of this story or blog is help those in the same situation to know that they are not the only one(s) in this boat without a paddle.

Syringomyelia - He Said, She SaidWhen I met my wife, it seemed that all of the issues related to Syringomyelia faded to the back of my mind.  Love is an incredible pain-killer.

Where we are now in dealing with this disease is not a place neither of us want to be in.  She has a perspective that is quite different from my own.  Even though that may be the case, I would NEVER say, “You don’t have Syringomyelia, so you don’t understand.”  We both suffer from this disease in our own way but together.  It’s truly a ‘He Said, She Said’ or ‘He feels, She Feels’ scenario.

It’s a lot like this for us:

  • He said: I hate hurting
  • She said: I hate that you hurt
  • He said: I wish the pain would go away
  • She said: I wish I could take the pain away
  • He said: I don’t want to talk about the pain and weakness
  • She said: Please talk to me about what is bothering you
  • He said: I don’t seem to be ticklish 
  • She said: Oh crap!  I am!
  • He said: I’m hurting
  • She said: It hurts me that you are hurting
  • He said: I can handle this
  • She said: I will be there for you
  • He said: I wish I didn’t feel helpless in fighting this
  • She said: I wish I didn’t feel helpless in helping you
  • He said: I want to be alone
  • She said: You can be alone but with me 🙂
  • He said: You should be with someone who is healthy
  • She said: Your love is the healthy that I need 🙂
  • He said: I’m tired of being tired
  • She said: Just rest, I’ve got this
  • He said: I don’t want to take anymore pills
  • She said: I wish you didn’t need to, but it helps and I’ll get them for you
  • He said: I’m tired of doctors
  • She said: I know that you are, but we need to get as much help as we can
  • He said: I love you
  • She said: I love you more

Syringomyelia - He Said, She SaidMy wife’s support is my life support and is better than any doctor, prescription, exercise or treatment that I could ever receive.  Neither of us understand Syringomyelia but we always try to understand each other.  She suffers with me and that hurts my heart.  It is just as hard for me to understand what she is going through as it is for her to understand what I’m going through.  The key for us is to listen to each other and TALK about it.  

For a person to simply discount the other’s pain because it’s not the same, is creating their own prison of pain.  I never want to be that kind of person.  As a person suffering from this disease, I hate it!  As my wife, she hates it just as much if not more.  

If you suffer from Syringomyelia or any disease for that matter, don’t think someone else doesn’t understand just because they don’t suffer from it too.  They are your cell mate.  Why let it be solitary confinement?  Why would you push people away and then say you are ‘alone’?  Open your heart, open your mind and for God’s sake open your mouth.  If they love you or care for you, then talk to them, love them and know that they are on your side.  

My wife isn’t a caregiver, she is my wife!

Proverbs 31:10-31 NIV An excellent wife who can find? She is far more precious than jewels. The heart of her husband trusts in her, and he will have no lack of gain. She does him good, and not harm, all the days of her life. She seeks wool and flax, and works with willing hands. She is like the ships of the merchant; she brings her food from afar.

Please feel free to send me your thoughts or more resource links using my contact page.   Peace, Love, Pancakes and Mermaids… — Michael Doc Davis (SyrinGoWhat.com), fellow Syringomyelian

Syringomyelia, Race to Win!

Syringomyelia, race start© SyrinGoWhat.com, Copyright Protected. Feel free to openly share this link anywhere, but please ask before copying this content or parts of this content elsewhere.

The runners get in position on the starting line.  The tension is building.  They grind their shoes in for the best grip on the track.  The announcer fires the starter pistol into the air and they’re off.

I take an early lead but only by a single stride.  My competition is staying within a foot length behind me as we round the first curve to the back straight away.  I trip, fall and I seem to be struggling to find my footing.  My competition passes on the inside.  I get Syringomyelia, crash but not outup but I’m not running as fast.  Still, I keep up with my competition and slowly close the gap.  I go down again in the final curve.  Am I done… am I out… NO!  I look to the crowd and see my family and supporters.  My wife and daughter proudly cheer me on. This is the energy I need.  I spring to my feet with determination in my eyes.  Even with a battered body I push to catch up to my competition and make my way to the finish line.  I close the gap once more and find myself step for step beside my competition.  We break through the finish line tape with my Syringomyelia, racing a turtlecompetition, the turtle, as the winner.

My supporters make their way to field to embrace me.  My head held high knowing that I kept fighting, I kept pushing and I won in my own way.  A single kiss from my wife, a hug from my daughter, the love from them all and the strength from God is what made these races worth racing.  With renewed strength, I make ready for the next race.

Although the above wasn’t an actual race, this race is my daily fight with Syringomyelia.  At times I feel like it’s slow and that I could be beaten by a turtle but I will keep racing and I will keep pushing to cross those finish lines.  I will get back up when I fall.  

Supporters support by pushing us to succeed.God, my wife, my daughter, family and supporters are my energy.  There is always hope!  There is always the race. We can ALL win our own races!  

Dig in, get ready, GO, get up and GO again!

If you are a spouse, loved one, family member, friend or even placing bets that we will win… please just know that YOU are the energy we need.  We may not always show how much it means to us but we know that we are blessed to have you in the race stands, by our sides and in our lives.

Syringomyelia is a race and an internal fight.  We can all win our own victories and together we can win a gold metal.

Please Note:  No turtles were hurt in the making of this story.  We even stop on the road to move them to the side.  🙂

Psalm 18:32-34  NIV the God who equipped me with strength and made my way blameless. He made my feet like the feet of a deer  and set me secure on the heights. He trains my hands for war, so that my arms can bend a bow of bronze.

Please feel free to send me your thoughts or more resource links using my contact page.   Peace, Love, Pancakes and Mermaids… — Michael Doc Davis (SyrinGoWhat.com), fellow Syringomyelian

Syringomyelia, Surviving the Tunnel

Syringomyelia, Surviving the Tunnel© SyrinGoWhat.com, Copyright Protected. Feel free to openly share this link anywhere, but please ask before copying this content or parts of this content elsewhere.

So what the heck does Syringomyelia have to do with a tunnel?  Most with this disease or any related disease, you probably already made the connection that I am talking about the dreaded MRI machine.  It’s definately not the tunnel of love but can be the tunnel to life, as in saving it.

I personally do not like anything about this piece of very necessary equipment.  I honestly believe that I would be in a much worse situation if we didn’t have this technology but that doesn’t mean I have to like it. 

The anxiety leading up to it and not being able to move my body throughout the process is unsettling to me.  In order to deal with the anxiety, I have my own methods to cope.  Being a comedian, yep it’s mostly entertaining myself.  Sure a valium helps a little. 😀

So here is a list of things I do (some being just plain silly and / or nerdy):

  • Before going back, I give my wife a smooch like I was going into war.  However, before I was married, I would give a random stranger a hug and tell them “I’m going in and I’ll see you when it’s over”.  Side note: I’m glad no one had a taser but the older folks didn’t seem to mind.  Ha!
  • Star Trek Torpedo TubeI picture myself as Spock from Star Trek and being inserted into a photon topedo tube on the USS Enterprise in preparation to be launched onto a newly forming planet.
  • Once I’m in, if not listening to music, I start rapping silly lyrics to the rhythm of the machine.
  • Living in a Card Board BoxIf I am able to listen to music, I always request The Point 94.1 classic rock station and do a sing along.  However, I’m glad the machine drowns out my horrible singing.  By the way, the song ‘Living in a box’ is quite funny while you are in a MRI machine.
  • There are times, while my eyes are closed, I play that old video game ‘Pong’ in my head… back and forth to the rhythm of the machine.  It’s a heck of a eye work out.
  • Sometimes I stick my tongue out as far as I can to see if I can touch the top of the MRI machine while hoping that I don’t.
  • I start telling myself stupid corny jokes and even make some up.  I tend to crack myself up doing this and have to avoid laughing to hard because it would throw off such an ‘advanced’ piece of scientific equipment.  (Q: What does MRI and CAT scan equipment have in common?  A: It’s frowned upon if you pet either.)  badump pssss
  • Sometimes I just have to work very hard at not passing gas because I’m not sure how close we are to being done or if the MRI tech would hear it, thus cracking myself up again.
  • I even start thinking about the funny words for body parts and then say them three times real fast… again trying not to laugh to hard.
  • I have many other things I do to pass the time and stay calm, but it can be difficult to stay still with a body that spasm’s and hurts but somehow I get though it and will again.

Vampire Scary ChickEveryone has their own way to get through stuff and these were some of mine.  I always try to keep in mind that the MRI is simply a tunnel and once through, I will have a better idea what is on the other side.  I just hope it’s not a half naked hitchhiker with wings and fangs from a scary movie.  THAT WOULD NOT BE COOL! 

My opinion is that not everything is fun but you can make it funny.  Laughter is the best medicine even if it hurts to do it.

Oh yeah, on a side note, have you noticed that these machines sound more like a cat?  Meowwww meowwww meowwww meowwww… meow meow meow meow… just a thought.  Ha! 

Mizz Kitty Cat Scan - My in home 'cat scan'.

Mizz Kitty Cat Scan – My in home ‘cat scan’.

John 8:12 KJV Then spake Jesus again unto them, saying, I am the light of the world: he that followeth me shall not walk in darkness, but shall have the light of life.

Please feel free to send me your thoughts or more resource links using my contact page.   Peace, Love and Pancakes… — Michael Doc Davis (SyrinGoWhat.com), fellow Syringomyelian 

Syringomyelia, through the eyes and from the heart of my wife and caregiver

Syringomyelia from the eyes and heart of my wife and caregiver© SyrinGoWhat.com, Copyright Protected. Feel free to openly share this link anywhere, but please ask before copying this content or parts of this content elsewhere.

(A blog post from my wife and caregiver, Christy Davis) Syringomyelia is a horrible and debilitating disease. I had no idea just how bad this disease is until recently.

Michael, has harbored this since before we met. He mentioned it here and there since we met in November 2011, but never in much detail. He was so active and constantly on the go. I just thought he was okay and if not he would tell me. During our dating period we were ALWAYS on the go; from runaway beach trips, road trips to state parks, comedy club and other adventures. On May 25, 2013 we left early for Pensacola Beach, I thought it was just one of our spontaneous beach runaway adventures. Michael proposed to me on the beach, that night, as the moon was rising behind him. I had no idea! Luckiest girl in the world! We had a lovely wedding and a wonderful time on our honeymoon. It was around that time when I started noticing something wasn’t right. 

Syringomyelia from the eyes and heart of my wife and caregiverI feel extremely guilty that I didn’t ask more questions and learn more about it in the beginning. To speak the truth, it scares the hell out of me. I have picked up information from his website, other stories on listed forums and other websites. For about the last seven months I have watched Michael become more and more less active. During the week and weekend it’s a constant battle with pain and extreme tiredness. Kaylea and I do not like leaving him at home when we go out. Syringomyelia can kiss it. In the future, if Michael can’t go we won’t go.

I will do everything I can to help him and be there for him. From back rubs deep into the night Syringomyelia from the eyes and heart of my wife and caregiver(every night), doing my best to keep him on track with medicine, making sure he has healthy meals cooked with turmeric, ginger, etc. and doing my best to keep the house in order. I will not be like any normal caregiver, because I’m far from normal by all means. I prefer the word wife because I said “I do” to all vows including “in sickness and in health.” I will not be going anywhere. My roll does not change and I will always be here for him.

It relieves some anxiety knowing that we have an upcoming appointment for new MRI’s and will soon have an appointment with a neurosurgeon. I will be there for all of this, too. I will make sure he gets the best care before, during and after all procedures.

Psalm 18:2 NIV The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold.

Please feel free to send me your thoughts or more resource links using my contact page.   Peace, Love and Pancakes… oh yeah and wishes of many ocean waves — Michael Doc Davis (SyrinGoWhat.com)

Syringomyelia Ocean Therapy

Syringomyelia - Ocean Therapy© SyrinGoWhat.com, Copyright Protected. Feel free to openly share this link anywhere, but please ask before copying this content or parts of this content elsewhere.

I thank God for my wife (my caregiver) on a daily basis that always go so far above and beyond.  I wish I could be more of a physically ‘normal’ person or man for her on a daily basis as well.  She means the world to me along with our daughter. 

You may wonder what this has to do with Ocean Therapy or Syringomyelia.  Well, when we are there I can let my mind drift away from the thoughts and pain of the disease. 

Being in the ocean water allows me to be free from the constraints of some of my limits.  I am weightless and so is my family.  I can carry my daughter and play with her with ease.  I can hold The Davis clan - Syringomyelia Ocean Therapymy wife around my waist or on my back with no pain.  No, I’m not saying she is fat.  Ha!  When I walk in the water, there is nearly no pain as the sand beneath my feet absorbs my steps.  My muscles relax as the waves massage my body.  I can float and be free, which is how the ocean is my Syringomyelia therapy.

The ocean water is amazing and I always feel refreshed even by being near it.  Ocean water doesn’t truly heal but it is definitely my type of therapy. 

I highly suggest water therapy, especially salt water if you are able.  I truly think you would be shocked at how physically ‘normal’ you might feel.  You can free yourself from gravity.  You can free yourself from constraints.  You can free yourself from some pain. 

There are a lot of other benefits to ocean water.  Check out this little article from LiveStrong.com.  However, it doesn’t mention the strength and stamina training you do while trying to get away from sharks.  Just kidding and stuff.

A GREAT place to visit is Henderson Park Inn in Destin, Florida.  It’s our new most favorite place to go.  While we were there, we were spoiled to the core.  Most of all, my favorite therapy was just yards away… the ocean.

I thank God for the most simple things and He always amazes me by His blessings.

Isaiah 43:2 KJV  When thou passest through the waters, I [will be] with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.

Please feel free to send me your thoughts or more resource links using my contact page.   Peace, Love and Pancakes… oh yeah and wishes of many ocean waves — Michael Doc Davis (SyrinGoWhat.com)

Is there support for Syringomyelia? Yes there is!

Is there support for SyringomyeliaIs there support out there for people with Syringomyelia and Arnold-Chiari Malformation?

Absolutely, there is!  

One of the biggest battles that went with accepting the fact that I had Syringomyelia was the struggle to find more information about it.  This was when I found out that what I had was as rare as my crazy type of comedy.  Yes, I am a comedian but I do take this and all diseases VERY serious.

I have found lots of groups, Facebook pages and websites with great information on them.  I put some of what I have found on the ‘Is There Support?‘ page on my website http://www.SyrinGoWhat.com.  I hope that this page is a good resource of resources that can help you too.  

We all need to help each other and help doctors help us.

Please feel free to send me your thoughts or more resource links using my contact page. — Michael Doc Davis (SyringoWhat.com)

Is it or is it not from Syringomyelia?

Confused about pain related to Syringomyelia© SyrinGoWhat.com, Copyright Protected. Feel free to openly share this link anywhere, but please ask before copying this content or parts of this content elsewhere.

Some of the suckiest (likely not a word) things about having Syringomyelia is that it’s difficult to know if what is going on with your body is related to it or not.  Since Syringomyelia affects your nerves and the muscles controlled by them, one can confuse a byproduct of the disease, something directly related to it or not related to it at all.  An example would be your back causing leg muscle weakness making you not walk in the way your body is designed causing your knee to hurt.  Once your knee hurts, you walk less and this causes muscle atrophy which causes more pain.  This type of knee pain and muscle atrophy wasn’t directly caused by the disease.  There are even times that side effects of the medications I have to take resemble symptoms from the disease.  With that being said, medications are not always the answer.  It gets easy to blame Syringomyelia for everything that hurts or doesn’t work right but I’m starting to realized this isn’t always the case!  I will continue to push myself, exercise, stretch, and work hard to walk properly.  Don’t get me wrong, Syringomyelia causes a lot of issues mentioned on the ‘What is it?‘ page.  This is NOT a disorder, it IS a disease that has NO cure but I will NOT just accept ‘It is what it is’ and I WILL live and love my life.  The lessons learned for me are that not everything is what it appears to be and always think more broadly than what your doctor will. 

Please keep everyone that is suffering from this and other diseases in your prayers.  God listens and God heals!  

Exodus 23:25 NIV “Worship the LORD your God, and his blessing will be on your food and water. I will take away sickness from among you,”

Please feel free to send me your thoughts using my contact page. — Michael Doc Davis (SyringGWhat.com)

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