Saturday, January 5, 2013

Determnation, preserverence,drive,and desire-how to live sick

If you have Cluster Headaches, ALS,Parkinson's,Cancer,Diabetes, or any other life altering illness, disease or sickness that you are like me. Yes it sucks big time we are sick and Doctors will tell you that you are sick but no Doctor tells you how to live sick. This is where this blog may help.

If you were recently diagnosed with some illness or Cluster Headaches like me. I highly recommend
you to educate yourself. Not on what drugs to take or get or try. But educate yourself on as much education about the disease itself as possible.

A doctor may have just sat you down and said " Sir,Ma'am,I am sorry but we have confirmed you have......" And then your appointment is done. I was never handed any pamphlets. Never told how to live,options or nothing. The doctor diagnosed me and said, son my next appointment is here. That was it. Id sure love to give him a piece of my mind now. I went home thinking oh boy its only headaches. A month later that had gotten so bad, I decided to google it. And my heart sank, mouth hit the floor. I just read I have an incurable disease that is the most painful on the planet known to medical science. Now what do I do.....

Like most I went through the 5 stages and it took me years to hit acceptance. I couldn't accept it until I didn't want to hide it anymore. Only the closest of my friends knew. And I had recently gone through a divorce and was single with this horrid disease. I thought how can I live like this, move forward and hide it.

Some diseases are pretty obvious, if you loose your hair people assume you have cancer or Parkinson's. All diseases that my heart pours out to anyone that has them. But how do you deal with a disease that no one sees unless you are having an attack? Trying to remotely explain to new friends, or anyone about the disease is silly to expect them to understand. They either look at you like your nuts when you tell them you have the worlds most painful disease on the planet and you suffer all the time or they don't believe you at all. All this is normal. I don't know what i was thinking expecting people to understand.

Some diseases are so well known like cancer and by no means am I denouncing cancer. Everyone is affected directly or inadvertently with cancer some how but a rare disease like mine is unheard of. There is literally barley any research done. I myself never heard of it. So why should others be so sympathetic? Moving forward.

You have to dig deep within yourself. Find peace and acceptance in your own mind and body you have a disease and sick. Once you accept what you have. Now its time to move forward and live with it. My hero Michael J Fox uses this analogy when he was diagnosed with Parkinson's and I use the same analogy when explaining my attacks. "Imagine standing int he middle of the street in cement shoes and you see a bus coming. You know its going to hit you but you don't know how hard.You sit and wait for it to happen". So that s what I do. I know my attacks are going to come daily. I know there isn't a whole bunch I can do to stop it. So just enjoy the time before he bus comes and know the bus will pass at some point.

We can not live in the moment in life of being repeatedly hit by the bus and live in he moment 24/7 of the pain. We must live in the off times mentally in the pain. Whether you are like me and have extreme pain multiple times a day or ongoing pain. train the brain, train yourself not to be in pain. Think about the now. Move forward.

I pray all ailments, diseases and sicknesses are cured but if they are not then live in the now. Move forward. One of the best books I ever read was 'Lucky Man" from Michael J Fox. I was under the presumption the doctor said, Mr Fox you have Parkinson's and he said great Ill start a foundation and raise over 250 million someday. Exact opposite. What i found was that Mike went through what we all do. Anger, resentment,denial and all of the steps.

A famous quote for him is"Vanity went out the window a long time ago". And I try to live by that too.
I now, having 4 brain surgeries have scars, a large bump on my head. Cables protruding under my skin in my head,neck, and a pacemaker visible in my chest. I have attacks in public. I don't want to live recluse, alone. I want to live my life. Move forward.

My heart bleeds for anyone suffering,I prefer surviving a disease. Yes it sucks big time the cards we are dealt. Now its up to us as "Survivors" to live with what we have and deal with it.

This is what I constantly say "Survivors" vs sufferers. Yes we suffer. Yes its no fun. But having the mind set of moving forward, being positive changes you to believing you are now a survivor.

I been told all my life I am one determined person. I do not accept NO as an answer. Hence my beautiful wife marrying me. My perseverance has led me to be where I am today. Travelled, met the famous, seen parts of the world, having drive to move forward and the desire to continue to fight this dreaded disease and not give up.

Not, can't, won't are not in my vocabulary. I tried, didn't work out may happen. but not without will and trying. I can accept failure only because I tried. I have and never thought of myself as better than anyone. I do not have that mentality. I feel sorry for those who think that I do.

Now being a walking cyborg I know there is many things I am no longer able to do and its very humbling asking for help. Was not easy to ask anyone for help as I prefer or like to try on my own first. But I have learned its OK to ask. I am no longer physically able to be as active, have full mobility like I once had and know I have to stop,breath and move forward. I have large foreign objects in my body. I can no longer do what I used to. I only found out because I tried not because I said I cant. And that is OK. My wife tells me all the time. You tried.

I truly feel sorry for those that are not sick and costntly complain, and whine about small miniscule things that are not important in life. Those people are lost drifters. Usually self absorbed with their own issues and need self praise to value their own self worth. Or insult others to pat their own ego. I have learned they are the first to flight when someone is in need. Cowards.

The toughest,strongest people physically I know would not last 30 seconds having an attack. I have 7+ years under my belt. But being strong isn't about strength. Its not how much you can bench,lift,work or how honourable your job is. Being strong is in the mind. Manning up to the situation, moving forward.

The mere thought of this blog is to motivate, inspire anyone sick to move forward, be positive, and be the mind.

CH took my health.True and fact. DBS took some of my mobility and some physical attributes.And some of my memory. I have ongoing short term memory loss.

No one can take my determination,perseverance, drive and desire to move forward, fight and be positive. For me my strength comes from my faith in God. My love for my wife and son.

I wish you to find inner peace, find your strength from within and continue with moving forward.


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