Is it really, 3:52am?

     OMG, it is, it is really 3:52 am!!  Well this is another pain about chronic pain, you never know when its going to want to wake up and of course wake you with it.  I woke up with what felt like two drops of saline fluid on my cheek and what felt like an 50 lb anvil being dropped on my back and in the faint distance what sounded like life laughing and saying, “It’s been 20 years, today’s the day you break.”   All I could think to do was exactly the same as the last 350-400 times this has happened, get up, put one foot in front of the other and kick life in the proverbial arss and go through with an attitude of  humor (laughter truly is the best medicine) , respect, dedication, love and keep the my arms and legs in the vehicle at all times on this ride called life and try and help others dealing with chronic pain see that pain is painful, but it’s how you deal with and if you accept the pain that will determine how the rest of your life is going to go.

     What I mean is, if you are in chronic pain or pain of any amount, disabled, depressed (which I am) in a wheelchair no matter what, it all depends on how if you decide to “LIVE LIFE” or if you just decide to “BE IN YOUR LIFE” that will determine what quality of life you are going to have.   You can go along with the cards you’ve been dealt lets say a pair of twos, and you just accept that the minimal day to day life is what you have available to you, nothing more only less.  Or you can turn in some of those cards and try for the Royal Flush and “ACCEPT” what you have and what you now are.  Agreed, you have a disability or disabilities, you still have a functional part of life, in life.  You can still touch, see, hear, taste, smell, you may have to do some of this from a wheelchair, laying in a bed or even missing a limb, you may even be depressed and I’m not trying to take that away, I’m trying to get you to wake up at 3:52am and realize “I may not be able to do what I use to or what everyone else may be able to, but there is a lot I still can do.”  I’m depressed and have been for 20 years plus, I can’t do anywhere  near what I use to be able to do, I require oral narcotics a slew of other medications as well as medicine being pumped into my spine, I can’t even mow my yard in on run it now takes three sometimes four runs at it, I can’t golf or bowl or do bumper cars with my kids anymore, heck I can’t even go to Disneyland anymore with a wheelchair for my wife to push me around in.  But you know what, I use the disability ramp when we go bowling (it’s been awhile) or we rent a mobile scooter when we go to the state fair,  yea I can’t do bumper cars but there is still a lot of other stuff I can do and will do.

 

     Be like every able bodied person and write out a “To Do List” and on it put down thing you know you can do and want to do and also put down thing you want to do but know you can’t.  Non-disabled people have dreams and hopes and lists of thing they want to do but know inside they will not get to, so why can’t we?  I have a forum on caregiving.com, under the “Group” tab and it’s named, “101 Things to do.”  It is for lack of a better term your, bucket list.  Each Friday I said I will be adding five (5) new things I would like to do before my time comes.  Now I know for a fact that I will never get to do a lot of the things I’ve listed but they are all things I’ve always wanted to do, many of them came about before I was even twenty, but they will remain on my list.  I encourage you to live you life to the fullest, see and do as much as you can with the new hand you’ve been dealt and if you don’t win that hand, put down another $5 chip and play another hand.  Never give up, Never say quit and as the saying goes, “It’s not about the seven times you get knocked down, It’s about the eighth time you stood back up.”  Life is to short, don’t let it go to waste.  / : ^{ ) >

Some of my top favorite quotes

These are most likely, some of my top favorite quotes:

“Be the change you wish to see in the world.”

    – Author Unknown

“A friend is one that walks in when others walk out.”

                        – Walter Winchell

“Everyone has strengths, but not everyone has the strength to be a caregiver.”

WheelChairNet.org

                                                               -Trish Hughes Kreis                                                                                    

“Do not let what you cannot do, interfere with that what you can.”

                                                                                          – Author Unknown

“The journey of a thousands miles begins with a single step.”

                                                                                            – Lao Tzu

“Failure is not falling down, but refusing to get up.”

                                                             – Chinese Proverb

“If one dream should fall and break into a thousand pieces,

Never be afraid to pick one of those pieces up and start over.”

                                                                                      – Flavia Weedn

 “The ones who are crazy enough to think that they can change the world,

are the ones who usually do.”                                                                – Steve Jobs

“Learn to be calm and you will always be happy.” 

runningatthespeedofme.blogspot.com

                                      – Paramhansa Yogananda


“To the world you might be one person, but to one person you might be the world.”

                                                                                                                              – Author Unknown

It?

“If you want it to happen, 

you must make it happen.  

If you let it happen,

you won’t like what happened.”

                                          – Dale Adams

Pain, Pain go away, Come back another day, or not.

Image     This morning was very unusual for my pain, at least it use to be.  I normally go to sleep in pain equal to that of chopping firewood or using a rototiller for about half a day (6-7/10).  Today was a level of pain I have not experienced unless I did do the above tasks and trust me, I know I can’t.  On waking up this morning at 4:46am I was barely able to roll myself off my back so I could do my normal routine of stretching while laying on my side before sitting up and then doing wave two of stretches, when I finally am able to get up and give the dogs their morning treats, take my medicine and use the bolus device (tells my pump “Fat Albert” to give me a extra shot of Morphine), then onto getting the dogs their food, Robert’s stuff ready (lunch and breakfast), a mocha for Trish and a quad caramel espresso for me.  After which I spend 30 minutes doing additional stretches and various yoga moves to help try and loosen up my body from laying down all night.  Even with my average of getting up 5-7 times a night to move around, not including the flip flopping, my pain today was (9/10), it was so bad that I had to skip the 1st-2nd wave of stretching and had to stand up quickly I hurt so bad, between the shoulder blades, right shoulder, neck, back (all of it), hips, legs, even the top of my right foot.  It was so bad that when I was stretching I began cr_in_.  Yes I said it, cr_in_.

     Several years ago my pain specialist, Dr. Stephens said the easiest way to explain it is that I am 44-45 (at the time) with the back of an 80 year old and there are days when I have to take the stairs literally foot by placing each foot on each step before moving onto the next one, I fell like i’m 80.   The only thing I have done differently over the last week is,  (1) walked each of the dogs (1/2 mile) and the (2) was I walked to the local coffee shop (9/10 mile, round trip) which included a 20 minute break when I arrived there.  Over the past year I have had issues with the medication and the workings of my internal medicine pump, even though the doctors are saying its fine which I have  to quasi believe that it is, I am still able to obtain the bolus shot (twice daily) and am taking the oral medicines as prescribed.  So I have no Idea what has made the pain go up 4-5 notches in such a short period of time.   Chronic pain has had such a life changing effect on not only myself but also my family, many don’t realize it’s true devastation.   Try going to the movies and having not being able to sit through more than 30-40 minutes of it at a time without having to go stand by the wall leading to the exit because your in extreme pain.  Or take a trip to some where close say Santa Cruz, Ca., normally from Sacramento about a 2.5 -3 hour drive and make it a 4.5 hour drive because you have to stop twice your in so much pain and the grand daddy of them give up a lot of what you love, 1994 Jeep Wrangler because its a manual transmission and every time you press on the clutch you have a searing pain shoot up your right leg into you left shoulder, camping, golf, bowling, not being able to teach your kids how to swing a bat, even just throwing a football around I can last about 15 minutes and the last 10 minutes of that I’m doing all I can to not fall apart and the list goes on.  Or even just dealing with things that are affected but cause pain, relationships (wink, wink).  Everything you do in your life when you are dealing with chronic pain, everything causes that pain to go up.  There are those days when I want to tell my wife,  “I washed your car for you sweetie” or “I mowed the yard” or “Sure, lets go to the State Fair” and I know (so does she) that my pain will be inflamed however, we’ve learned that when this things happen (State Fairs every year folks) and for the next few days after, just give me space and yes we both know why.  So when someone you know who has chronic pain and for some reason they just are not being themselves, or they are acting like their 80, just say something like, “Hey, good to see you.”  and know that if they snap that’s the pain talking not the person.   On a personal note, to all those people who I have unknowingly upset by making a unintentional comment and hurt you in someway I apologize and to my loving and very supportive family, thank you for standing beside me through all of this and for putting up with all my crap.  I could not have done it with out all your support and love, Thank you.

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Thank you all

.      /

/ : ^{ ) >

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