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Surviving the evils of Chiari and related conditions in an evil world

Jul 18, 2018 - 8 comments

It seems every year or less some medical professionals tell me that I should write a book about my life. Today this very kind Doctor took the time to explain to me why I should write a book. And exactly what good that she felt it would do.

Well, her explanation was not what I'd envisioned in my feeble little mind. She briefly scanned my medical charts and mentioned different demons that have been surpassed over the years. She explained from her perspective how discussing them in open would perhaps do exactly what I've spent my life trying to do. That being help other people cope with the evilness that life can bring our way. To show others that no matter how evil our health can be to our very psyche we can indeed succeed in prospering in this sometimes dark world of health issues.

So will the book be written... perhaps or perhaps not. However... she has been the first person that explained to me why it would be a good idea. For her privacy I'll call her Aleisha as it is name that brings a vision of beauty to my mind and heart. Her kind understanding and empathy reminded me of a beautiful heart so we'll call her Aleisha.  

But then how does one begin writing a story of their life and include the many different health issues that have been overcome? To write about them and their affects on my life without sounding like one is crying over spilt milk? This could be a chore that may time time to ponder but perhaps it is time. A friend that I know not well suggested that I follow through with this many years back. Perhaps I should have listed [We'll call you Kathy but you know who you are]. For now we will ponder the meaning of writing a book such as this one. Pondering not just the benifit that it would do me to put it all in words but also pondering the eternal question. Would this really help even one living soul? And if it would help even one living soul then isn't it worth the time and effort to write to share? If for no other reason then to say 'Hey, you can do it so just try. Just try to stand up straight and yell to the world "I CAN do this!"

If you read thus far, what do you think? Does reading how another succeeded or failed with an illness that you struggle with bring you strength? Strength to succeed? Strength to continue to not give up?

Our health and this wicked old world... Write a book you say?

Dec 15, 2016 - 0 comments

If you are reading this do yourself a favor and stop here...

For years I've been told to write a book about my life. It never dawned on my why I fought that idea for so long, why it seemed so foreign to me or useless of an idea. Now suicide that idea has made sense many times throughout my life. Not a will to die just tired of all the fuss with so many health issues. Tired of hearing so many iept quacks calling themselves doctors who don't have a clue. Now the ones who acknowledge that some thinks are beyond them or that they need help understanding they are not included in that quack statement. They are some of the only real people in the entire medical community. But a book... really? Why?

Well due to some medical insurance issues I've agreed to therapy for the first time in my life. Reluctantly but I agreed based on being told that allowing them to document my PTSD would help get medical insurance back. So fine I figured we can play their game. Didn't really expect anything from it with all sincerity. It still seems like just a horrid waste of time and money. However it has opened my eyes a bit to the huge golf ball I have tied up in my gut. The one that has been building pressure for 55 years now as I hid my head in the sand waiting for so many things to just pass over and either to have not happened or to somehow miraculously just go away. Well I was wrong. The therapy is something I should have done years ago.

To be honest I've been told about the PTSD by different ones for years. I just didn't buy into it. I couldn't see how someone like me could have PTSD. By default due to my health I've always led what most would call a pretty boring life. That being the case how could I have PTSD? In a very short time I'm learning that PTSD is not what I had in my mind. Yes at times it is tormenting war veterans and the like. But it never dawned on me that so many of the nightmares, periods of utter irritation and anger could be linked to the medical weirdness of my life.

My first indication that it could related to my childhood was when I laughingly told my mother about a life long dream. This was some 20 years ago I told her about this dream, nightmare really, that I've had repeatedly most of my life. It was always essentially the same - I'm locked in this chrome plated jail cell curled up with a stuffed horse and I hear people yelling my name but couldn't respond. As I sat at mom's kitchen table, along with my wife, one day mom listened to me talk jokingly about this nightmare. She had a look of utter horror on her face. When I told her the strange thing about it was that in the dream I always had this horse, that I'd named horsey, and I was squeezing it to death. But that horse looked just like the horse she had thrown out when I was young. I'd taken it into my sandbox and well got it pretty dirty. When I told her about the horse her look of terror broke out into tears. I stopped and tried to ask her what was wrong repeatedly. Finally she opened up and told me that it was not a nightmare. She said that actually happened to me when I was 4 years old and that I had horsey with me. I'd had my first spinal tap and afterwards I was scared to death. She said when no one was watching I'd climbed out of my hospital bed and hid under it with the horse. She said the crib had chrome plated bars that were pulled down on both sides because the staff and her were searching the hospital for me. Everyone was calling my name because they didn't know if someone took me or where I was.... Scary thought to think that that traumatic memory follows a person throughout their life. There are more memories most of which she verified where things that really happened to me as a young child. Like being stuck hanging upside down and every time I'd move my legs to try and get loose blood would run down. She said that was something I got a beating for by my dad as I wore braces that had become stuck in their couch. She said I not only shredded the side of the couch but it blood stained as the braces cut into my legs from me struggling to get loose.

So what does all this have to do with my fear of writing a book? Well, now I get it. As the idea of PTSD is beginning to sink in I realize it's not that I'm against the idea. It's as the therapist stated I don't see myself as worthy enough of a person to read about. Perhaps not her exact words but that's what my brain heard from what she surmised.  So will I write the book? Will I open up and reveal some of my life in order to try and help others? For the first time in my life I actually want to do this... though I don't really know how to go about it so we'll see. This is the start... just to see if I could let a few thoughts flow without bringing on the thoughts of self harm from certain memories. Most of my family would disown me for writing about it. But then most of them disown me for being handicapped anyway so what of it.

So will this continue? Will I write my story and open the wounds? I don't know. I want to at this point. Time will tell I suppose.

So you are researching Chiari Malformation for a family member?

Oct 08, 2016 - 0 comments

Well firstly- Fellow Chiarians, please forgive but no doubt you've been there...

This note is to those who don't believe your family member, friend, workmate or whoever really has it that bad with Chiari Malformation. That perhaps they overplay the condition for whatever reason you seem to have convinced yourself. Well let us shed a little light on things that will help you see just how true your reasoning is in reality.

Yes, we know you have headaches too. No doubt you've read up on what  a Chiari headache is like and feel it's no worse than what you deal with now and then right? Perhaps you've heard that they often start in the back of the skull and radiate forwards at times. That's no different than what you deal with now and then right? Let's take a look at that ....

What makes you think that these random posts that you have read mean you 'understand' what a Chiari Headache is really like? You can trust this - all Chiarians are thankful that you DO NOT HAVE A CLUE what a chiari headache is really like. That doesn't mean you don't have headaches. Migraines even. Many of us also deal with migraines and know first hand that they are no joke. However to compare a migraine to a intracranial headache from Chiari's hateful arrogant eye is even comparable is just as stupid as a 12 year old girl thinking she can handle giving birth to a child and caring for it. I won't say that makes you stupid as a stupid person is one that isn't willing to learn and if you are still reading instead of ranting than obviously you want to learn. However, if you still belive your migraines are even on the same planet as the headaches that many chiarians deal with does make you well... not the ripest grape in the bunch.

For whatever reason mankind in general seems to think that whoever has the most painful or plentiful scars wins the battle. That is complete bull droppings!!! I guess if that analogy carries any truth to it than the man with the nicest truck buried in his casket with him also wins, right? Every human being is imperfect and has their own issues to deal with. To each person at times these issues are or can seem overwhelming. Who's trials are the hardest or the most painful isn't the the issue. To those who feel the need to prove their life is harder and Chiari is just an 'incidental finding' so not a big deal... well I'm thankful that you are painfully ignorant of the effects of Chiari on ones life. Why? Because to understand you would have to be living in the body of a chiarian. You would have to be listening to yet another fool like yourself who thinks it's a game to see who has the most pain.

Now if you are still reading... then obviously some of the above doesn't apply to you as you genuinely want to understand. I hate to tell you this but a huge part of dealing with Chiari Malformation and the after effects is contained in the paragraphs above. You see the headaches, drop attacks along with various incapacitating central nervous system issues are only made worse by stress. So many people have the attitudes of those we are speaking to above that it makes dealing with Chiari so much worse, so much more painful, so much more frustrating that understanding how people treat us is a huge part of what Chiari Malformation really is all about.

Don't understand what this means? What central nervous system issues? It's just a headache right? Not even close... think about it. What does your brain stem do for your body? Not sure. Consider this... many times a sniper is taught to shoot at that quarter sized space just below the cerebellum. If they hit this it's certain death as when they hit the brain stem they have wiped out life functions. Well guess what? That quarter sized spot is what is greatly effected by Chiari Malformation. So mock heart attacks, random numbness in different body parts or for some even temporary paralysis and or mock strokes are a part of life. We could go on but if your desire really is to learn what your friend or family member deals with then do not say "I get headaches too" do not say "Oh I deal with that stuff all the time you just have to ignore it and go on" or I so love the " try Excedrin it works for me". Many other thoughtless comments such as these have been heard by me as well as others here so if your desire is to learn and truly show empathy.... don't talk, listen.

Now, this most likely sounds like the rants of a mad man. Not at a all. In fact they are the words of someone quite different than that. My own mother used to counsel me because I didn't get upset with people calling me a cripple. {Yes, in my case that is yet another evil gift from Chiari Malformation}. No, it's just an effort to make you think before you speak. Be glad you DON'T know what a Chiari headache is or feels like. Just quit trying to understand what you can not understand. As a professor and engineer I respected dearly used to say "you can't teach a man to understand what he just doesn't have the capacity to understand." If you personally don't have Chiari you don't have the capacity to understand. You do however have the capacity to find empathy, not sympathy there is a huge difference, to be compassionate and perhaps even helpful.

Still not sure... that's ok, to admit you don't understand is the beginning of understanding. I'll give a hint to ponder. Unfortunately I've had more surgeries than my age. During several I have woken up due to my bodies resistance to medication. The last three were all abdominal surgeries. One my guts where literally lying on my belly. I laid and watched the surgeon cut me until they noticed me awake. This past one my liver was partially out of the rib cage... well I'll spare you the gore. The point is the pain I felt from those surgeries was so much less than the crushing pain of Chiari that I laid there calmly watching as it was literally nothing to me. Literally. If that sounds hard to believe then consider again in your mind "is Chiari just a headache like you get?" because I kid you not. The pain of surgery is much less than pain from a severe chiari attack.

Shutting up for now, though I do hope and pray at least one person has enough empathy in mankind to 'listen' not talk the next time some one needs to talk about what they are going through. None of us know what the other person is dealing no matter the issue.

CW shutting my trap now

Pain Control via Mind Control

Oct 25, 2009 - 2 comments

pain control




mind control




Chronic Pain



The human Mind is the strongest tool that we have at our disposal. The mind is an unbelievably complex, unpredictable yet obscenely powerful. It is able to save a life or take one. It is also able to create a smile or frown. With all of its unseen, not understood or even matched power anywhere in the universe, how shall we expect to control its power? How shall a mere human use the minds power in a positive way? If the mind can have such a positive power could it also carry a negative influence on our body? And, if so, how can we prevent its negative power on our individual body?

A young teenager has learned carpentry from his father. He loves his father dearly and doesn't want to let him down. The father has asked him to build a new wall to put up in the interior of the barn they are building. The boy knows exactly how to do it. Early in the morning he arises ready to work, grabs a bite to eat and sneaks out the door. He doesn't want to wake his parents as he knows this is one he 'must' do alone for his own sense of self worth, for his own confidence. And just to prove he 'can' do this he can make it happen all alone. So off to the barn he goes.

Thinking to himself of everything his dad has taught him. He knew how to make a cut nice and straight; how to reinforce his studs, corners even how to build up the needed headers to sturdy the room. Yes I can do this no problem he thinks as he opens the back door of the barn. Inside he rounded up all the tools and a couple pairs of saw horses. He sharpens his carpenter’s pencils. OK, he thinks, I'm ready. So off into the room to be remodeled he goes.

That is when his confidence takes a small hit. The lumber is all there waiting on him. What he didn't know in preparing for this job was that his father had rounded up enough old barn lumber to do the job in order to teach his son a valuable lesson. He wanted to teach him "Don't just 'do' the job." in other words "Think about it, plan it through" use your brain don't just pound nails but use all the tools you have at hand. The ones you don't know how to use, well those are the ones you need to perfect. You see the barn lumber was coated with old milk paint and full of nails. The boy was not aware, the father was, that below the surface of the paint was 100 year old native hardwood. Even once his son learned how to square the boards and pull all the nails he still couldn't complete the task. No, first he must learn how to get the nails into the very hard and sometimes brittle hardwood. You see this wood was so hard that a nail could not be driven into this wood by conventional  methods. And it was going to take much work and many new skills in order to make this wood into a useable resource. But the end result to the father would be a son who would understand the need to think things through. The true meaning of 'Don't just 'do' the job'. The father was not asleep as the son had thought rather he was awaiting his recognition of the skills he had yet to learn. They spent the next week learning how to make do with what you have. Together the father taught his beloved son that in life every situation has a solution, he just needed to learn how to evaluate his options.

In the end the room was built of this native hardwood. Once surfaced, squared and drilled the walls went up easily. And oh, they were so strong.  The boy, now a man because of the control and thought process had learned from his father. How to prepare this pile of junk wood into a marvelous home not just the mere wall that was originally intended. A home so wonderful neighbors from all around simply flocked to take a tour. This room seemed so strong that even a tornados mighty power could not take it down.

The story could continue, but the point here is not the inherent perseverance of native hardwood. Or even the thoughtfulness of this boy’s father. No, it's the need to look at every situation with hope. In the situation with the least visible hope there is always the brilliance of a mighty star somewhere. It is up to us to find it. You see the boy had at his disposal jointers, planners, huge drum sanders, radial saws, table saws and virtually every woodworking tool you could imagine. Yet he still didn't know what to do with the pile of junk wood. Why? He had yet to learn how to 'think it through' and utilize the tools at his disposal because he didn't know how to use all of them. The correct tool was not the closest or the easiest to use, no it was the one that took more effort but in the end provided the best results. The same is true of us....

Just as the boys mind 'learned' first to listen then how to make what he learned work, we too need to learn that lesson. There are times when many with chronic pain simply must use the pain relievers that doctors have to offer. But what is the lasting result? Is it pain relief that can last more than a few hours? Is it happiness or a better relationship with your spouse, mother, father or child? When the pill bottle is empty; what happens to your indestructible house? Ask yourself when was the last time that those pain pills really allowed you to get up and go participate in some activity that you really enjoy without paying the price later? But the pain is so very real; we all know that to be fact. People with Chiari are not alone in this world in learning to cope with pain. This brings us back to the most powerful tool of all.

What is the most powerful tool we could use to eliminate pain? Could it be a Komatsu D575A-3SD bulldozer? Or perhaps the Saturn V Rocket? A Nuclear Reactor? Or maybe you would say the most powerful tool known to man must be a Thermonuclear Bomb with such power at its disposal what could possibly be a more powerful tool? You are correct, not one of these awesomely powerful tools will eliminate a simple headache let alone the chronic pains that you may suffer. Let us think about something for a moment though.... The tools listed above all have very different purposes do they not? Very different designers even. But they all have one thing in common. What is that one thing?

It took the power of the human mind to create each and every one of them. The power of the human mind is needed also to even use anyone of those tools for good or bad. What about your mind, does it contain power over your own body? Well not enough to stop sickness or death, we all know that is in the Almighty God's hands. But can we teach our mind to build a beautiful house with our life, despite the pain? The answer is yes, YOU can.

As with the young boy who built such a wonderful room, it takes effort and lots of willpower. But we can do this! The benefit, your body is now yours again. And now you have power over the doctors who want you to vegetate along in life as in reality that is how many doctors see their responsibility to their patients. Yes, you have the power within you to harness your own life. Does pain disappear; of course not we can't perform miracles however we can control our thoughts. Ahhh.... but the power we have within ourselves is held within the brain. Our own brain.... yes, it controls your vital functions and as it pertains to this discussion the brain is the very epic center of pain. As the synapses fire it feels the pain impulses from our nerves. It feels what our body tells it to feel. However at times we perceive what it tells us to feel.

For example, the other day while working in my small woodworking shop we had a small accident. I was building a beautiful box like container out of contrasting woods for my wife’s kitchen. While sizing up the pieces for a perfect friction fit I deduced the need to use a board and small mallet to fit the bottom into the top. So I gave that piece a good smack with a 2 pound mallet, check the piece- all looked good- so I gave it a good smack to drive it home. Well it was cold outside so I didn't notice that when I smacked it I'd smashed the end of my finger right off, literally. It stung but didn't really hurt so I ignored it. A few moments later I noticed the blood on the floor and then looked at my finger. Upon seeing my finger the first thought into my head was "Why doesn't it hurt?" well of course then my brain registered and I did feel it.

This shows us that to a degree we can control out pain. As in the example the key is to control not only what we do but what we allow ourselves to think about. Such as a marathon runner, on mile 20 of a 21 mile run you must not allow your mind to focus on your body or the next thing will be your body shutting down as you realize the pain and utter exhaustion.

With Chiari, this can be even more difficult as the cerebellum is involved. It can however be your best tool in dealing with Chiari. Medications are a very limited and limiting tool. Many meds may actually cause you to 'feel' that your symptoms are worse over time. This is not to say that all meds are bad or useless, sometimes they are an 'evil' necessity for a time. To really live your life you must give the brain credit as your best tool to true peace of mind.

These thoughts.... well some, I realize, may take offense. To those.... I'm sorry you feel that way, truly. However, as the saying goes "been there done that". My life from birth on has been one of constant and chronic physical pain. The thoughts you see here are from a life of experience in dealing with pain. It has taken much time to learn to "focus out pain". You really can accomplish this goal. It is never complete, in other words you never completely focus it out. Sometimes, some days the best you can do is control what you allow yourself to do. Recognize ahead of time that if you do a certain task there will be a price to pay. But most of all, when the pain is the worst 'under no circumstance' allow yourself to think about how bad it really feels. When you do give in to the despair that chronic pain can bring, if you do, then you will be the runner that quit on the 20th mile of a 21 mile marathon. Drugs... well they just cannot offer you the freedom or the power you already possess in your own mind. For you see, here is the key, that power in your mind that we speak of does not come from you.
No, that power is ours to harness, but only by means of the one who created the mind itself. For even the most grandiose of doctors out there is still going to be limited by their own imperfections. The one who created the human mind; he has the power and the will to help you learn to control your thoughts.

Again, no, he won’t do it for you. It is your responsibility to ‘carry your own load’ as the scriptures state. But our creator does plead with us to allow him to help us in our every plight until the day when his kingdom comes. He tells us that when we allow him to handle our every anxiety that he will provide to us the ‘peace of God that excels all thought’. Yes, we can do much to alleviate our own suffering with our marvelously constructed mind. But it is only by allowing our creator to help us guide our thoughts that we can truly release it’s true potential. By allowing the almighty God to work with us then we can learn to cope and find happiness rather than frustration with this thing called Chiari and truly release the power of the human mind.

With all of it’s complexities the true power of our own mind to help us is only clouded and blocked when we give in to narcotics. You truly can learn to be content with the situation in life where you are by using the power of the human mind coupled with the power of the Almighty.