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Syringomyelia, The Walk of Pain

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This will likely not be unfamiliar to those that suffer from the same disease as I do.  Syringomyelia seems to be a not so friendly life partner.  When I think everything is getting better and I go to sleep, I wake to do the walk of pain once again each day.  

Sometimes I wish my body was like Legos so that I could detach the parts that hurt.  However, stepping on one of those Legos would be an entirely different ‘Walk of Pain’.  I don’t know about you, but stepping on a dang Lego has made me dance a dance that I didn’t really know I knew.

Syringomyelia, Stepping On A LegoWhat’s so interesting is how similar that pain is between a foot being imprinted by land mine Lego and the daily pain of Syringomyelia.  The only difference is I don’t think Syringomyelia has ever made me dance unless jumping like a funky chicken or the seat comfort shuffle counts.

Syringomyelia, Mr Potato Head - SyrinGoWhat.comMaybe if my body could be like a Mr. Potato Head so that I could have interchangeable body parts.  That could work but with my luck I would end up with Mrs. Potato Head’s spud implants or find my shoes in my butt compartment.  That indeed would result in a ‘Walk of Pain’.  By the way, I’m trying not to visualize walking with butt shoes.  

Ok you might be able to tell that I’m a touch A.D.D… SQUIRREL!  I just wish my attention could be as easily lost on the pain when it’s bad.

Syringomyelia Searching For Answers - SyrinGoWhat.comMy wife and I have been finding some interesting options that seem to be helping some that include some muscle stretches, different sleeping positions (no longer sleeping on my stomach), CBD oil spray, turmeric spice added to foods, drinking more water, redusing sugar (not from my wife), reducing gluten foods, reducing any alcohol, reducing caffeine, reducing sodium, along with a couple of other things.  The weight loss seems to be helping as well by lowering the pressure and strain on my back or spinal cord.  All we can do is try, right? 

My friends, please don’t give up on yourself because God will never give up on you.

I pray each day that God gives me strength and relief and He does.  I thank God for my wife, daughter, family and supporters.   I continually pray and hope that a cure can be found for all of us.

Matthew 4:24 NIV News about Him spreads all over Syria, and people brought to Him all who were ill with various diseases, those suffering severe pain, the demon-possessed, those having seizures, and the paralyzed; and He healed them.

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, Welcome to HELLo

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Although Syringomyelia may seem like hell at times and for some nearly all the time, but it also seems to be an interesting way to meet people and say HELLo. 

I find the majority of my comfort with my family, the beach and resting but I also enjoy writing these stories, perspectives and a few good laughs.  This often results in my wife and I meeting new folks.  We love saying HELLo to everyone and hopefully cheer up their day and raise awareness.

We obviously can’t take the pain away from anyone, but a little lighthearted / funny, inspirational, and personal experiences may just be that quick physical or emotional pain vacation that someone needs.

Both Christy and I were brought up to love everyone and this is how we are bringing up our Michael and Christy - SyrinGoWhat.comdaughter as well.  As a matter of fact my wife recently saw an older person and said, “Kaylea and I love old people.”  However, me being older than Christy, I had the opportunity to point out the foot that she just had stuck in her mouth as I did my best to keep a straight face while laughing VERY hard on the inside. 

We are like any other couple with ups and downs, difference of opinions, etc.  Yet, we always agree that a simple HELLo can make a person’s day.  We also agree that tickling a person when they have gas can turn into some interesting aromatic entertainment unless your spooning.  No this is NOT just an Arkansas thing.  🙂

Syringomyelia SUCKS and we ALL can agree on that but the worst thing any of us can do is alienate ourselves or descend into a darkness of ‘no one understands’.  There are plenty of people that ‘understand’ and I’ve listed lots of support groups for SM / CM warriors along with those that love and care for them on this page – http://syringowhat.com/is-there-support-for-syringomyelia-Chiari

I would give this advise, one that sometimes I mess up, be open about what you are going through.  Also, be receptive to how it makes those around you feel.  You might find out that you both are affected by this disease, just in different ways.  Understanding this is EXTREMELY important!

Syringomyelia, Group Hug - SyrinGoWhat.comAnyhow, don’t be a stranger, share your stories, fellowship with others (with or with out your disease), never be afraid to laugh a little and just say HELLo.

If you see a post from us on Facebook or anywhere else for that matter, please feel free to say HELLo and we will do the same. 

1 Thessalonians 5:11 NIV So then, encourage one another and build each other up, as you are doing.

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 and the Cycle of Strife

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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!

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

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(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

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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)

Why ask Why? Syringomyelia Shouldn’t be a mystery!

Confused about Syringomyelia treatment -- SyrinGoWhat.com

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I found that when working with doctors that I made several mistakes by assuming that the doctors knew everything.  No human can.  Part of their training is instilling confidence in their patients.  Some doctors translated this into ‘never act like you don’t know something’. 

This situation can be a big risk or no true path to dealing with the root cause of symptoms.  I’ve learned to ask the doctor questions when they suggest a treatment, a prescription or nothing at all.  The doctor should be able to answer any of your questions if they are providing an action plan.  My suggestion is to ask questions, mainly ‘Why?’. 

When you interview your doctor, you may just help him or her discover that they may need to learn a little more about Syringomyelia.  I have another post on my website called ‘Syringomyelia Caregiver Quick-Tip Pocket Guide‘ that contains a document from wstfcure.org.  This is a great packet to hand your doctor.

Here are some of the questions I try to ask:

  • Why would this affect that and how?
  • Why are we doing another MRI?
  • Why are you prescribing this medication and how will it help?
  • Why or how will increasing the dosage of my medication help?
  • Why am I being referred to a different or another doctor?
  • Why do I not feel like I am stabilizing or getting better?
  • Why would you think that my disease isn’t the cause of my pain?
  • Why can’t we try something different than what just treats symptoms?
  • Why would you ‘think’ you know and is it wise to base my treatment on that?
  • Why would you prescribe physical therapy as a cure if some of those activities could make it worse?
  • Why do you think stretching fixes my issues?
  • Why wouldn’t you want to know more about Syringomyelia?  Here is a packet.

Some times I just want to start asking random questions just to see how they respond:

  • Why is the sky blue?
  • Why did I have to wait so long?
  • Why is this room so dang cold?
  • Why would a person feel that another person’s time isn’t as important as their own?

There are plenty of more questions that I ask.  However, many times I seem to not be given enough time to ask them or feel rushed and I forget.  I need to remember that I am paying for a service and I should be satisfied by that service.  I need to MAKE the doctor think and learn before just throwing suggestions and treatments at me.  I AM IN CONTROL!!!  I need to always write down every question I want answered and my doctor will need to answer each one.  This is my life, my appointment and my money.  So now I ask you this… Why not ask why or what or how or when? 

Remember this my friends, you are in control.  You got this!

Deuteronomy 31:6 NIV Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you.”

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)

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)

Syringomyelia is NOT a walk in the park!

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For some reason there are a lot of doctors that under value a person’s statements when it comes to pain related to Syringomyelia.  Much of this is likely from the nation wide abuse of pain medications and the Obama Care requirements on physicians.  No I’m not making this political, I was actual told this by more than one physician.  Doctors are having a hard time juggling quality patient care and increasing the patient numbers they see to be able to stay in business.  This seems to result in doctors not taking the time or being able to take the time to listen and / or learn about Syringomyelia.  This means they really can’t work towards helping increase the quality of life for patients.  

Some of my many personal experiences with doctors have included:

  • Here take this for a couple of weeks and you should be ok after that.  
  • You should stretch and excercise more and you should eventually not have pain.  
  • If the pain is still there after a month of rest, we can temporarily kill the nerves in your back using injections.  (With already having a loss of sensation along with muscle control issues, this doesn’t seem like a good idea.)
  • The Syrinx in your Thoracic wouldn’t cause problems in your legs, we should work on your lumbar spine.

Syringomyelia is like walking in deep mudWell this is all just quick / short-term “fixes” that don’t really solve anything.  For me, Syringomyelia is NOT just a walk in the park, it’s more like a walk in thick mud!

Fortunately, an organization called Worldwide Syringomyelia & Chiari Task Force put together a Model of Care that that you can provide to your doctor or a doctor can download.  Let’s all help educate doctors and help them help us.  They can’t know everything… none of us can.

Jeremiah 29:11 NIV For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.

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

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