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Syringomyelia & Chiari Resources

Tag: is there support

Syringomyelia – Weather or not??? The pressure is on…

Syringomyelia - Weather Pain - SyringoWhat.comIt can’t just be me, but my wife and I have possibly determined another trend in what may agitate symptoms related to my Syringomyelia.  We finally realized after a few years that later in Fall seasons I start having more and more frequent but sporadic pain and discomfort.  Apparently, my syrinx has seasonal allergies to fast shifting between high and low pressure weather fronts, specifically when a cold front arrives.  Ultimately between the end of Fall and the first part of Spring, my Syringomyelia symptoms ‘rain, sleet, hail and snow’ in.

I’ve read other articles about weather fronts and how it affects arthritic people among some others but I never would have thought it would affect my Syringomyelia.  However, it makes since now.  As a precaution my doctor made sure I was tested for arthritis among a plethora of other possibilities with no issues resulting.  If you’re wondering how we came up with the hypothesis of weather affecting my Syringomyelia, then here is our thought process.  High to low and low to high pressure in hydraulics is used to affect the position of heavy machinery.  So, with that thought, pressure changes in the weather seems to affect the fluid pressure in my spinal cord thus sporadic pain impacts and fluctuating Syringomyelia symptoms.  In late Spring to early Fall, the weather doesn’t change as much with cold being a factor and I seem to me more comfortable along with a more stable quality of life. 

I decided to lookup related information on Google and low and behold there was actually a small blog article talking about the same thing on ASAP.org (http://asap.org/index.php/blog/weather-and-cmsm).  I truly believe that weather is a key factor in my pain, ‘weather’ you believe it or not. 

Syringomyelia - He Said, She SaidNow with all this being said, my wife and I can almost always predict when the real bad times (symptoms) are coming.  After my last doctor’s consultation, he
also agrees with this hypothesis and now is very open minded on how to help keep me up with the right pain meds for when I need them.  I don’t generally use prescription pain killers anymore but my doctor now ensures I have them in the event that bad times do ‘storm’ in.

Jokingly my wife and I keep thinking this is the final reason we needed for us to move to Florida for more stable weather without the high pressure cold fronts.  However, we also truly believe salt water heals and I even wrote an article about that as well that you can read using this link.  OK, we just want to be in Florida regardless.  J

Barometric Pressure, Weather and Syringomyelia - SyringoWhat.comMy advice at this point is to pay some additional attention to the weather when pressure changes are going to occur and then make note of your symptoms the days leading up to pressure change and several days after.  I’d love to hear from you if this seems to be the case for you as well by using the contact page on my website.

Keep strong my friends and keep God in your life and hearts.

Jeremiah 17:14 NKJV Heal me, O LORD, and I shall be healed; Save me, and I shall be saved, For You are my praise.

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 Syringomyelia Warrior

Syringomyelia, Thankful and Giving

Syringomyelia, Thanksgiving - SyrinGoWhat.comWith Syringomyelia, sometimes it’s hard to find the things that I’m thankful for when I get overwhelmed by pain, discomfort or inconsistences in health.  However, many times it doesn’t take much for me to find plenty to be thankful for.  Mostly it begins each morning and continues throughout the day when I take the time to reflect, it makes it easier to notice my blessings.  There really are so many in this world that have it much worse than I do… just watch the news.

I am thankful for (In no specific order except the first 3):

  • A loving and loyal God
  • The love and patience of an amazing wife and daughter
  • My family and friends
  • Crab legs and orange sherbet
  • Each day I wake up
  • A home, food, transportation, a jobSyringomyelia, Thanksgiving Practice - SyrinGoWhat.com
  • Oceans and beaches
  • My cats and their silliness
  • Giblets are not as gross as they sound
  • Walking and functioning while I can
  • My Syringomyelia could be much worse but isn’t
  • There is support for Syringomyelia
  • DVR’s so that I can avoid watching commercials
  • My freedoms as a US Citizen
  • 2nd Amendment… pew pew
  • Ability to give back to the community
  • There are only 2 terms for a president
  • Laughter
  • Natural herbs and stuff to help with my Syringomyelia
  • Good poop days and Lysol
  • The internet – plethora of information
  • And much much more…

Syringomyelia, Thanksgiving Butterball - SyrinGoWhat.comHonestly I could go on and on about what I am thankful for but I a love giving even more.  Being able to make people laugh with my comedy, provide comfort in my writing, helping charities with promotions and more.  OK, I like to give my wife and daughter a hard time too but don’t tell them that, because I like to keep them on their toes.  🙂

Yes it is still hard at times to see past the limitations of this body of mine but I do and will look past it every day.  I challenge everyone to thank of two things you are thankful for any challenge that is in your life.  Give a little of your time to help others and it you might just end up being thankful for even more.

Have a very blessed and happy Thanksgiving to everyone!

1 Thessalonians 5:18 ESV Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

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 – Trick or Treat

 Syringomyelia, Trick or Treat - SyrinGoWhat.com© 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.

Happy Halloween everyone.  I’ve posted on Facebook that I thought it would be kind of funny to make a Syrinx costume and dress up for Halloween but it didn’t quite happen.  I debated on what that would actually look like and was thinking it would look like an elongated balloon.  However, with my luck people would have thought I’m an Oscar Meyer wiener or some other kind of wiener.   Come to think of it, I’ve been called that a few times, HAHA!  You have to admit that this would have been a hilarious way to raise awareness about Syringomyelia.  Syringomyelia, Syrinx or Hot Dog - SyrinGoWhat.comPeople sure the heck wouldn’t have had a clue as to what I was and would have had to ask.

During my many years of dealing with Syringomyelia, this stupid disease does like to ‘trick’ me into thinking it’s better and then poof the next day WTH!  The only real ‘treat’ from it is a greater appreciation from all of what I DO have and those that have come into my life.

Syringomyelia - He Said, She SaidAs far as dressing up, my wife has helped me realize that I don’t have to cover up my pain nor ‘act’ normal… ok, I’m a bit weird in general.  🙂 Since being with her I’ve found more strength in accepting what I have and not having to hide from it or hide it from others.  It was a huge relief and she has made it much easier to deal with head on.  My wife wrote an awesome post called ‘Syringomyelia, Through the Eyes and Heart of my Wife and Caregiver‘.  I will continue to fight with the ‘trick’ being to continue ‘treat’ myself to life and happiness.  I truly hope that all of those that deal with this disease can and will do the same. 

One last thing, don’t let doctor’s try to ‘trick’ you into thinking that Syringomyelia is just in your head or the symptoms can’t be from it especially when there is evidence that they are.  Also, sometimes the best ‘treat’ments are the ones you find on your own.  Some of the ones I have found both beneficial and not so much can be found on my ‘Doing it Doc-cy Style‘ post.

BOO AND STUFF!!!


James 1:17 KJV Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.

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, The 14 Day CBD Oil Experiment

Syringomyelia, The CBD Experiment - SyrinGoWhat.com

© 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.

This experiment was for my own personal interest, hope for relief and a possible alternative to prescription meds in relation to my Syringomyelia.

Below you will find my daily log of observations for 14 days as it pertains to my physical and emotional wellbeing ending with my wife’s observations and my conclusion (product name and link where I bought it). 

I entered into this with a very strong disbelief and skepticism due to so many ‘promises’ and doctors missing the mark on helping me deal with my Syringomyelia.

These are my results and I am not suggesting anyone try the same path without consulting with your doctor first or at least research on your own and start out with low doses as I did.  Not everyone will have the exact same results.


Day 1 – I received the CBD Oil (Tube / Gel Form) at a high 43.5% potency late in the evening for my Syringomyelia.  Prior to taking this first dose, I was considerably fatigued, achy, painful back, and weak legs from a long work day.  I’m starting out with a low dose of about 1 or 2 mg that is placed under mytongue, twice a day.  I took my first dose at 7PM and at this point, nothing really feels different but likely won’t until in the morning.  I will take a second dose tomorrow.   This tastes horrible but tolerable.

Day 2 – I woke up this morning a bit sick but I highly doubt it was related to the CBD.  I noticed something interesting when I got out of bed for work.  My legs and knee don’t hurt which they normally do and have for a long time.  I took my second dose this morning and have continued without leg and knee pain all day.  We will see if this actually begins helping my back.  My third dose will be tonight.  I’m still very skeptical.   

Day 3 – It’s day three and I haven’t noticed a lot of big physical differences / improvements but I’ve also been a bit under the weather that’s unrelated to Syringomyelia.  I’ve still noticed that my knee and legs don’t seem to hurt but I’ve been resting because of the previously mentioned illness.  I believe I may feel a little less stressed and tense. Tonight will be dose five, so I’ll stay positive but likely remain skeptical.   

Day 4 – Well here we are and I still seem to have pain relief in my legs and knee and I have a little bit more control in them as well.  The less stress and anxiety is also a relief that is VERY welcomed and is helping.  Since I’m not noticing any notable back relief quite yet, starting on day five, I will be upping my dosage to about 5mg.  I was going to wait but the dosage range is 1 to 50mg and I started on the low range first. 

Day 5 – Today I woke to something quite unusual.  For a brief moment, I actually had full feeling in my legs for the first time in over 10 years.  It was very brief but it almost brought me to tears.  I still have no pain in my knee either.  I seem to have a little more strength in my legs as well.  The bad news is that I felt like I could push myself and strained a little and this caused my legs to become weak again, lesson learned.  This CBD oil isn’t a magic bullet but it seems to be possible relief.  I will continue tomorrow at the higher dose of 5mg twice a day.

Day 6 – There seems to be a bit of a difference noticed.  Don’t get me wrong, I’m not out of pain but I seem to be getting more comfortable.  Tension headaches seems to be far less and / or manageable.  Back pain is still present and the feeling in my feet has semi-returned and now I realize that my toe hurts… now that I can feel it.

Day 7 – I’m at 5mg still with the same minor differences noticed.  Some sensitivities where once numb or limited have returned and made things more enjoyable.  I may increase the dosage by a couple more mg twice a day to determine if any more improvements will be noticeable.  I’ve decreased my gabapentin from 2 pills to 1 pill a day, nearly no ibuprofen and no pain pills.  I’m not sure if this may be counter productive.  However, hip and upper leg pain is much less.

Day 8 – Well, I have to admit, the intimacy with my wife is becoming more enjoyable from a mobility and sensitivity perspective.  I know that this is likely TMI, but intimacy is a key bonding function for partners.  For the partner, they can enjoy something other than just taking care of you.  For the person with Syringomyelia, it allows for a moment of being normal and enjoy their partner.  I’ve increased the mg to 7mg’ish twice a day.

Day 9 – This weekend, I’m planning for some outings with my family and to do some physically intense activities as well.  This will be the real test to see if there is any real difference.  I have noticed that since I’ve been taking the CBD oil, if I hurt, the recovery time seems shorter.  I definitely no longer have the pain in my knee nor the numbness under it.  Tomorrow and Sunday will be the big days.

Day 10 – Today was a personal victory for me.  It’s been a long road these past few months of setbacks.  Today I spent time with my family on some light to medium hiking trails including rocky inclines and caves.  The last week or so have been a nice change.  There are many things I’ve been changing but one stands out more than others and I have to admit, it’s this CBD.  I’ve increased my dosage to about 5mg 3 times a day instead of 7mg 2 times a day.  It’s still VERY hard for me to believe.

Day 11 – I accomplished 2 very important personal challenges plus a bonus this weekend.  I hiked / explored with my family and push mowed my entire 3/4 acre lawn.  The bonus was that I’ve walked about 15 miles or 30,000 steps.  25,000 steps today alone.  Not bad for someone that couldn’t walk more than a couple miles a day over the past several months because of my Syringomyelia.  Thank you God, I believe!

Day 12 – Although my body was a little sore today, I was quite able to function.  The last time with the level of activity like this past weekend, it would have taken a couple of weeks to fully recover.  My hip was killing me yesterday and today but it wasn’t related to Syringomyelia.  I’m already nearly back to my ‘normal’.  Legs are good, back is better, I can feel my feet and my spirits are up.  On top of this my wife and I have enjoyed more and more time together as a couple and like a couple plus more intimacy.  I’m so glad she is patient with me.  This experiment seems to be going well regardless of my remaining skepticism.

Day 13 – Today there is not a lot of differences from yesterday.  However, yesterday was a very good day compared to several weeks ago.  Anxiety is lower, stabbing pains are gone, hip pain from the weekend activity is nearly gone, no head aches, increased feeling in my feet and more.  If this continues with the fact I’m only down to 1 gabapentin, no prescription pain pills and minimal ibuprofen…. I may just think this CBD oil has some real possibilities.  Tomorrow will be the final day of my experiment.

Day 14 – This morning, I realized that I’ve been waking up in the mornings much more refreshed and ready to meet the day.  I haven’t had to take sleep aids very often anymore which is exciting.  Today I’ve experienced far less pain and any pain that I have felt doesn’t really stick around long.  I have continued sensation in normally numb or near numb legs, stomach areas and chest. These last several days have been a very welcomed relief from the feeling of a downward spiral to disability.  What a great ending to this 14 day CBD experiment.  I will continue to use this CBD.


Michael and ChristyWife’s Observations – Since using this CBD oil, my husband seems happier and far more chipper.  He’s been getting up early in the mornings and sleeping through the nights where previously he was up and down quite a lot.  He also doesn’t seem exhausted before bedtime, we watch more ‘Everybody Loves Raymond’ and cuddle time is EXCITING just like it used to be!  You would almost think that we were honeymooners again with all of the physical activities, wink wink.  He is more active after work and doesn’t have to immediately rest trying to recover from long work days.  He is once again able to enjoy activities with my daughter and I.  Don’t get me wrong, Michael has always been strong and amazing but then he started struggling more but now my daughter and I have our Michael back.  I’m honestly very glad we found this CBD Oil and that Michael tried it regardless of him being so darn stubborn and skeptical.

My Conclusion – For me, CBD Oil is helping and at this point I can not deny it.  I am simply amazed by the differences.  My back, feet, legs, stomach, chest, man parts and other areas are doing far better than they where a few weeks ago.  Heck, I’m even poop’n regularly… HA!  Oh yeah, no side effects noticed like craving snack cakes and Doritos, laughing at trees, dry mouth, drowsiness, running naked after chickens, eating peoples faces off, etc.

I suggest consulting with your doctor and giving it a try might be worth your time.   Again, this is NOT a magic bullet and doesn’t ‘fix’ anything but for me it’s a much better alternative to all of the other crap doctors have been prescribing me.  However, in their defense, there simply isn’t a lot of knowledge on Syringomyelia.

I did several weeks reviewing companies to trust or not trust, product reviews, ratings and I finally found the product for my personal experiment.  The CBD Oil I’ve been using is by iHempCBD.  I purchased their gold version at 43.5%.  However, I have found that Palmetto Harmony works as well if not better and is FAR more inexpensive.  

Please be VERY careful ordering from any company because I ran found some companies that weren’t up to my standards.  This CBD Oil does not contain THC therefore it’s available in ALL 50 states.

I SIMPLY FEEL BETTER!!!

A big THANK YOU to my wife Christina for her support and Ty Colwell for helping put my humor to a graphic.


Philippians 4:19 ESV And my God will supply every need of yours according to his riches in glory in Christ Jesus.

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, To CBD or not to CBD

Syringomyelia, To CBD or Not To CBD© 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.

This is in no way advocating or selling anything.  No product names will even be mentioned.

I have read and tried all kinds of stuff with natural and created ‘helpers’ for my Syringomyelia.  To be honest, I am extremely skeptical about anything and everything that anyone says could help with this Syringocrap.  I’ve passed on information about stuff that seems to work for me along with the stuff that hasn’t.  I’ve tried turmeric and ginger, which did have some minor positive results.  I’ve also tried various other herbs, spices and medications including Gabapentin.  I’m really still not convinced that Gabapentin is doing much for me but I’m also not convinced to stop using it either… GRRR!

Syringomyelia, Eating EverythingSo here I am.  My wife and I have been reading about something called CBD Oil.  It suppose to have nearly the same helper qualities as marijuana but without the side effects of thinking everything is funny and anything is yummy.  It’s based on hemp seeds vs. marijuana and contains no THC.  I work 50 hours a week and I can’t afford to deal with marijuana side effects, doing anything illegal or the grocery bill that comes with it.  CBD Oil is 100% legal in all 50 states.  Heck, hemp seeds are even sold at Walmart and Walgreens.

So here I go.  I’ve been trying out a lower dose of CBD Oil just to see if I noticed a difference past any possible placebo effects.  What I’ve noticed so far is that I seem to not be as anxious or stressed thus placing less pressure on me and my body.  This in turn seems to be making it to where my muscles don’t hurt ‘as much’.  My stomach doesn’t seem to hurt and I seem to poop more regularly with I'm not saying, SyrinGoWhat.comout any strain.  YAY!!! Less strain equals less pressure on my spinal cord which means less spasms and less pain there too.  I’ve never really had any headaches associated with Syringomyelia but I have noticed that I haven’t had nearly any tension headaches from my very stressful job.  On a even more personal note, the bedroom play has increased a bit since there isn’t as much fear of how long it will take to recover.  No, it’s not that wild in there… as far as you know and I’m not tell’n.  🙂

So what am I trying to say?  I just recently ordered a much stronger version of this CBD Oil for my big experiment.  Once it arrives, I will begin a daily log of anything I do or don’t notice as far as any changes or differences.  I’m not mentioning or discussing the product’s name at this point.  Once I have completed 14 full days of experimenting and not the college type of ‘experimenting’, I will post what my ‘opinion’ is.  Have you ever noticed how opinion sounds kind of sounds like onion?  I guess both can make you cry too.  <– ADD SQUIRREL moment!  After I publish my opinion / onion, you may want to ask yourself, ‘To CBD or not to CBD’.

Any who, I’ll let you know what happens and stuff.

Romans 8:18 ESV For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

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

Syringomyelia, Welcome To HELLo© 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.

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

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, 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)

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