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Syringomyelia, Glory Hole-e-luiah

Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comWhat a crazy, fun, adventurous and victorious day against Syringomyelia traveling to the Glory Hole Falls between Fallsville and Edwards Junction, south of Boxley Valley, Arkansas.  Unfortunately, my Syringomyelia struck before we even got started.  This time in the form of needing to do #2.  Mind you, I have never ever in my 43 years of life pooped in the woods.  Today was my day and I executed flawlessly.  The better news is that I didn’t find out if bears pooped in the woods with an accidental encounter.  I wasn’t too worried since the shear whiteness of my rear would have likely blinded any potential predator.

Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comOK, back to the adventure… we arrived roadside on HWY 21.  There weren’t any stores, houses, bathrooms, places to get something to drink and limited cell service.  With Syringomyelia, this ups the risk significantly but I was not about to turn back.  We started down the trail and I knew this was going to be a BIG challenge.  The trail started out pretty flat but went downhill quickly and literally.  At that point it was clear why they called this trail ‘Moderate’.  My wife and I pushed ahead descending nearly 200 feet down in elevation.  The entire time as we descended down the uneven rocks, sporadic muddy spots, etc… I enjoyed the trail but I was also concerned about the trip back out and up.

Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comWe arrived at the top of the falls and all of the struggle to this point was well worth it.  However, we still wanted to see the bottom of the falls as the water flows through the glory hole.  There were several slippery spots and now absolutely NO cell service.  We had to be very careful and I used a hiking stick for stability.  Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.com Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comNow at the bottom of the falls, I have to say it was VERY impressive and it was very happy ending.  I silently thanked God and my wife for the strength and I also believe CBD helped get me get to this point.  We enjoyed the cool air and view.  It was AMAZING!  Nature sure can make some amazing scenery.

Now it was time for the trek up and out.  I knew that it would be hard but nobody was going to do it for me.  We climbed and climbed step after step.  I never thought about the entire task, just the next step.  We finally made it back to our 4Runner and were VICTORIOUS!  At the end I did nearly 7,500 steps for the day, climbed the equivalent of 36 flights of stairs (200+ feet in elevation)

Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comSyringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.com

Ultimately with God’s love, my wife by my side, CBD in my system and a go get’em attitude… I can nearly do anything.

Matthew 19:26 NIV Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”

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, Doing it DOC-cy Style

Syringomyelia Doc - 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.

I’m not a real doctor but I did play one in a movie once… Ha!  Actually people just call me Doc because of my initials being MD.  I know that doesn’t sound special but my mama say’s I’m Special.  🙂

What is DOC-cy Style… well it’s my own personal methods for dealing with symptoms related to my Syringomyelia.  Many of these methods have helped me at different times in different ways.

I’ve found that many different things put strain on my spinal cord and / or neurological system but it’s been over a long period of time.  I figured I would capture some details here so that maybe it could help some of my fellow Syringomyelia and Chiari warrior friends.

I’ve tried a lot of things.  Some have worked and most have had little to no noticeable result.  Here is a list of things I’ve researched, reviewed and tried.

Body Positioning / Exercises

Descriptions Results
Sitting straighter in chairs This has lowered the strain on my back and likely my spinal cord (lower pressure against my syrinx.)
Laying flatter in bed vs crooked neck Seems to have made my thoracic area of my spine less sensitive and sore.
Raised position of phone

Reduced phone use (texting, Facebook, etc.) should continue to provide relief due to not stretching the spinal cord.  Bad posture = bad SM days. <Read Article>

Not laying on stomach while sleeping. This has helped my arms and neck tremendously.  Also, if I laid on my stomach, this makes my neck twist to the side thus additional stress on vertebra and spinal cord. <Read Article>
Focused walking By focusing on my walking to make sure that I am lifting my legs properly allows me to better control the wobble and dropped foot issues.  This seems to help with joints not rocking that would cause even more pain and over corrections using my back.
Careful stretches I know that with my Syringomyelia, I can’t just sit around thinking it will go away, so I do some careful stretches.  I’ve had to be careful but it can definitely be overdone and I have.  Stretches have helped with spasms and cramping muscles.
Walking as much as possible I try to walk as much as possible each day at work and home.  Averaging about 2 1/2 miles a day up to 15 in one weekend.  This has helped with muscle cramps and avoiding or dealing with atrophy.
Swimming I love to scuba, snorkel and just float around.  Ocean surf works me out the most but it also moves my body around allowing for more flexibility. The weightlessness is always welcome with my back and spine.  OCEAN THERAPY!
Losing weight I’ve lost nearly 10 pounds while making several changes listed in this article.  The less weight I have, the less pressure on my back thus happy spinal cord.  <Read Article>

Herbs, Spice and Everything Nice

Descriptions Results
Turmeric This has helped a little when I remember to take it consistently.  When I do, the inflammation from my syrinx operations seems to be kept a bay vs. using ibuprofen.  We add this to food, juices, etc. 
Ginger Ginger seems to help the pain aspect.  It also has a calming effect on my stomach from when I have to take ibuprofen or other stuff.  I add it to juices as well.
Valerian This helps greatly with my muscle spasms and boy howdy it will knock your butt out.  Works like a charm and I’m generally relaxed and refreshed the next morning.  Stinks to high heaven though.  Kind of like wet gym socks.
Eucommia I noticed absolutely no noticeable results with this plus it spooked me a little because the name looks like you may end up asleep for a long time.
Potassium / Magnesium When I notice muscle cramps I first take potassium / magnesium since sometimes I’m bad at drinking as much water as I should.  Within an hour I’m usually good to go.  This has also helped calm my heart down at times.
Turmeric / ginger concoction called Inflammotion To be honest, this combination just didn’t seem to do much more than Turmeric by itself.  When stuff like this is combined then there is far less of any one ingredient unless you take a lot of it.  I HATE PILLS!
CBD Hemp Oil I have had some pretty amazing results with this.  Lowered pain, increased sensation, higher energy, etc… I documented all of my observations in this link.  AWESOME STUFF!

Kava Kava

This did absolutely nothing for my back but it did seem to help my tension headaches a little.  I’ll likely stay away from any more purchases.  However it does sound like a nice drink.

Pharmaceutical

Descriptions Results
Gabapentin There have been some positives results from this but they were short lived and a trend began with the doctor of continuously increase in dosage.  NOPE!!!  With the CBD Hemp Oil I’m already down to 1 of these evil pills.  The side effects and withdrawals are HORRID!
Flexeril I’d rather stick with the valerian.  I can wake up easier with valerian.  This stuff messes me up the next day but I sleep through EVERYTHING!  I almost even slept through our cat making biscuits on my head.
Hydrocodone This definitely helps from a ‘pain vacation’ perspective but causes horrible constipation and I have a hard time sleeping then I have to take some other something to counter that.  I HATE PILLS!!!
Pain / Inflammation patches This was as close to useless as I’ve tried so far.  It was localized but fell off easily, didn’t last long and cost $80 out of pocket. 
Back brace Yeah… this was stupid.  I’m not sure what the heck the doctor was thinking at all.  Guess what… His office charged the insurance company $998 for it.  I found the same one on Amazon between $90 and $120.  GO OBAMACARE! 
Ibuprofen / Acetaminophen Well these do help but they are never a good long term solution and play havoc with my internals.  I will continue to use them as needed but rarely have to because the CBD Hemp Oil seems to work better.  YAY!
TENS Unit This has helped with muscle locks, spasms and muscle strengthening.  This is a great part of my pain arsenal.

Diet

Descriptions Results
Lowered sugar All of these sort of things can cause crazy stuff to muscles, joints, spinal cord pressure, blood pressure and more.  When my wife and I started changing our diet, we both have noticed beneficial results.  This stuff in high amounts isn’t even good for anybody when they are 100% healthy.  Add my Syringomyelia into the mix, well it’s pretty obvious that if I wasn’t willing to change then I couldn’t expect anything to get better.
Lowered caffeine
Lowered nicotine
Lowered alcohol
Lowered sodium
Lowered gluten
More water More water has helped me feel more energetic.  I poop more (TMI) and I assume more toxins are being flushed from my body and flushed down the toilet.  This is a win win by drinking more water.
Taking multi-vitamins I know this is something I should do regardless but alas it’s easy to forget.  However, I was taking ‘Alive’ multi-vitamins religiously for a few months.  If there were any difference, it was so gradual that I never noticed it.
Adding turmeric to food My wife and I add turmeric to as much stuff as we can.  I believe in turmeric very much for anti-inflammation.  You can find information all over the web about it and it can be purchased anywhere.  I noticed after short periods when I take it that I don’t seem to need ibuprofen.
Increased fish / chicken consumption vs beef and pork By reducing pork and beef, I haven’t really noticed a lot of differences other than not as many stomach aches and grogginess,  This means I get up and move more which is a good thing.  However, I HAVE TO HAVE MY STEAK AND BURGERS!!!
Juicing (Fruits and Veggies) This ROCKS!!!  There are lots of recipes on the internet for pain remedy juices.  They really freak’n work.  I always add ginger and turmeric to them.

Avoidances

Descriptions Results
Over flexing / stretching This tends to cause my body to catch on fire like Ricky Bobby.  It’s good to stretch and flex but knowing my limits has helped me avoid the body blaze.
Picking heavy stuff up This is pretty self explanatory.  Awkwardly weighted stuff is what causes most of my issues.  I still rough house with my daughter and wife.  Before you say it… I’m not saying they are heavy.
Straining while taking a poop Well, it’s a great excuse to relax.  Straining while dropping the kids off at the pool is not a good thing.  My body will have spasms like crazy if I strain.  So I sit and relax and there have been a couple time I thought my Syringomyelia got the best of me but my legs had simply fell asleep.  Thank goodness for Angry Birds.
Too much walking I assume that when I am over doing it when I walk too much, it can build pressure in my spinal cord and we all know what that means.  The crazy thing is that ever since I started the CBD Hemp Oil stuff I’ve been able to walk far more and longer.
Riding in a car for too long My wife and I have figured out that it’s best to just stop and stretch every couple of hours.  Otherwise my legs get jiggy with it, begin cramping and my thoracic area becomes sore.
Sitting or laying in one spot too long I simply can’t sit still for too long, but when I do it causes muscles to begin cramping and numbness takes over.  Ok, that actually sounded like a Dos XX commercial.

Medical Procedures: If you have read my ‘About Page‘ on SyrinGoWhat.com, you will see that I had 2 decompression operations with 2 corrective procedures.  These did stop the progression but alas it is causing other issues related to the operations themselves.  My syrinx has not grown in 13 years.


Syringomyelian Stay Strong - SyrinGoWhat.comTo make a long story longer, the above includes most of the things I’ve tried over several years along with my observations.  Some work well and some work not so much.  None of the above cures anything but for now it’s all about relief. 

I’d say always be careful with what you try.  Review, research and ask professionals.  For me, I can’t just sit around and hope that ‘poof it can be fixed’, so I try to help myself.

I hope that some of the stuff in this article may inspire you and possibly even help.  Life is about hope and faith.

Joshua 1:9 ESV Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.

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, Gimp’n Ain’t Easy

Syringomyelia, Gimp'n Ain't Easy© 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.

There is nothing easy, fun, glamorous, lazy, attention seeking or playful about Syringomyelia.  It’s truly exhausting both physically and emotionally.  For some it’s gradual but for me it was sudden.  It’s assumed that my Syrinx was caused by a trauma impact from falling down stairs.  The impact was full force with all of my weight on the thoracic section of my spine.

I have to admit, with my Syringomyelia, there are times that I think to myself that it would be easier to jump into a powered chair.  For me, and I know many others, gimping around simply isn’t easy nor fun. 

However, knowing how my mind works, I’d have to ‘upgrade’ my power chair with the following requirements:

  • Syringomyelia, Doc's Power ChairHigher horse power (No top speed / Highway capable)
  • Rollover cage equipped (Safety first)
  • Rechargeable with solar and / or old beer (Don’t drink and drive)
  • Mag wheels (with playing cards clipped on for that cool motorcycle sound)
  • 4 wheel drive capable (In case a mudding opportunity arises)
  • Racing stripes (Look fast and be fast)
  • Hydraulics (Just because)
  • Heated seats with enough room so my wife could ride bit….ting her lip
  • Transformable into a robot or something completely not ‘politically correct’ (Why not)
  • Hidden satellite TV with DVR (While waiting for stop lights)
  • High wattage stereo system with Bluetooth (No texting while terrorizing)
  • Built in cooler (For whatever)
  • License plate with ‘And Stuff’ (Everything is better with ‘And Stuff’)

The bottom line is if I have to ride, I’m going to do it in style since “Gimp’n Ain’t Easy”.

I could race around with a sign that would say, ‘This power chair is far faster than the help we need to fight these diseases’.  OK, actually the normal speed of a power chair is likely faster to be honest.

Syringomyelia, Doctor Not ListeningI definitely hate not being able to take off running after my daughter or wife without falling or hurting.  Please note:  They typically don’t try to run away because of the rope.  Ha! 

I continue to try to exercise, walk 5000 steps or more a day, stretch, etc.  Alas, even with trying, the doctors tend to ‘think’ it’s not enough.  This is why it’s so important to support organizations that are fighting for us with Syringomyelia or Arnold-Chiari Malformations.  No body wants to resign themselves to a power chair or bed but it is happening with minimal REAL support from the medical community.  On top of this, social support and employment support is as equal if not less.  Some of those organizations are on my ‘Is There Support?‘ page.

Again, I don’t take Syringomyelia lightly but I do take it lightheartedly.  It’s the way I cope because I will not let it beat me!

2 Corinthians 4:16 NIV “Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day.”

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, an Unruly Teenager

Syringomyelia, The Unruly Teenager - 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.

I don’t know about you but this Syringomyelia thing sure does seem like an unruly teenager.  To my body it seems to try to push my buttons and my patience.  I bet if it could beg to use my car over and over, sneak out at night or take money from my wallet, it would.  Ok, actually it does take money from my wallet.  Dang that child!!!

I think if it’s going to act like an unruly teenager, it should go to its room shut the door and do its own thing in there instead of in my body.  If I could ground this disease, I would.  Instead, it tries to ground me when my legs try to give out on me.    

Since this Syringoteen wants to live here, I think it needs to get a dang job and pay its own way in this house.  I’m not real sure who would hire a Syrinx, but I bet it would be great as a mime.  It could inflate, grow, annoy people, continuously to get in the way and be just as useless.

Syringomyelia, Ugly Spandex - SyrinGoWhat.comSo now my mind shifts to imagining what kind of clothes a Syrinx would wear.  I’m thinking it would be some sort of spinal spandex or something.  That stuff never looked good when it was ‘in fashion’ and it sure doesn’t feel good ‘in me’.  I guess I can only hope that this unruly teenager of a disease would just move out and live on its own. 

The next time I see a disrespectful, rude and / or obnoxious teenager, I’m just going to ask him or her if they are a Syrinx.  I’m sure the confused look on their face would be priceless.  Yes, I know… that’s likely not what people consider ‘raising awareness’.  Ha!  A different spin could be the next time I see my doctor, I could tell him that my teenager is acting up and is a pain in my back and / or neck.

Syringomyelia, I Make The Rules - SyrinGoWhat.comWhen it’s all said and done, this is my body, I pay the bills, so I make the rules.  However, my patience is wearing thin and I’m about to whoop it’s butt.  If it keeps this up, I’m going to send it away to military school.  Well at least I wish I could.  Regardless, it’s part of me and I’m learning to live with it. 

Even with the worst of kids, there are still better days than others.  I always thank God for EVERY good day and I pray for the next good day.  I pray that a cure can be found and good days will outnumber the bad ones for all of us.

Psalm 107:19-21 NRSV Then they cried to the LORD in their trouble, and he saved them from their distress.  He sent forth his word and healed them; he rescued them from the grave.  Let them give thanks to the LORD for his unfailing love and his wonderful deeds for men.

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, The Walk of Pain

Syringomyelia, The Walk of Pain - 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 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 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, Surviving the Tunnel

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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 

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