Monthly Archives: January 2014

Winters Fury

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Winter1*All pictures are the sole property of Paul Glover, Paul Glover Photography, ALL RIGHTS RESERVED

As a chronic pain patient I know I am not alone in saying how much I loathe, despise and generally hate winter. Normal winters are bad enough, but this winter has been cruel and grueling. We have had nearly non-stop arctic blasts putting wind chills into the single digits and even negative temperatures. Even with the heater going and layers of warm clothing, the cold creeps into the house. If you have to go outside for even a few moments it is just agonizing.

One can never really know what it is like for someone else unless they have experienced the same thing. A man cannot know what labor pains are like. Someone who has never had a migraine cannot fathom what an intense, debilitating experience it is unless they get a migraine at some point in their life. I cannot imagine what it is like to have kidney stones because I have never had them. What we all can do, however, is try to empathize. Those of us that walk this walk on a daily basis do not want pity. We just want healthy people to understand that each and every thing we do each day, even the most mundane of tasks, take five to ten times the effort of a well person. For instance, my Cervical Stenosis has gotten so dire that I cannot walk the thirty or so feet to my car from the steps without dropping my keys at least once. A text from me is going to be full of typos. This is not because I do not know how to spell but because my fingers just do not work. Imagine trying to wash your car with about 30% to 50% of the pressure that the hose normally produces. Winter magnifies it…it is painful and cruel. I hate it and feel like hiding until April.  People wonder why I miss California so much. The list is long, but this is one of the many reasons. I know I am not alone. So here is hoping Punxsutawney Phil predicts an early spring. If he does not, I may find a cave and just sleep until the mercury decides to rise to a livable temperature. Until next time, K.

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My January Day, Visiting August: Osage County

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Osage1aaPaul and I go out to the movies about one time a year. It is all our wallet can handle. We sneak our own soda in and with popcorn up to $6.25 for a small bag, if I am in the mood for a snack, I will sneak a small bag of candy in as well. Pawning a kidney simply to get the ‘big screen’ experience is not an option. We did have free passes, a Logan’s gift card (Christmas gift) and had not been on a ‘date night’  in forever. I felt passable so we opted for “August: Osage County” overlooking that “Walter Mitty” was still showing, albeit at only one early afternoon matinee. Little did I know this ‘black comedy’ was going to have me crying through part of the movie.

Osage3aJulia Roberts is my favorite actress and Meryl Streep is one of my favorites. If Meryl Streep does not win the Oscar, it is a crime! As the daughter of addiction, Ms. Streep did not just nail the part, she had me so engrossed, my Post Traumatic Stress Disorder kicked in and I literally felt I was there….. feeling I was back with my own Mother and reliving her escapades while she was under ‘the influence’. It was almost as if I was watching my life, with the addition of two sisters and an array of eccentric, imperfect extended family to help support me in their own way. I have always maintained if my life were made into a movie, I would want Julia Roberts to play me. Little did I know that in a way, my prophesy was coming true! This led me to think; what if my battle with chronic illness started long before the chicken pox and shingles ever hit me at age 29? What if getting the chicken pox and shingles were just a trigger for the inevitable? Perhaps trying to stay focused on getting the hell out of dodge and staying sane in a house of horrors for so long made me extremely fragile. The first really difficult physical illness that set me up to crumble, physically, like a tired, broken down building just needing that last little push in order to give way. I will maintain that every fellow fibro warrior I have talked to can fill in this sentence, “I was never the same after________”.  Perhaps for me it could and should be amended to “surviving a verbally abusive alcoholic Mom.”

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This is not a ‘warm and fuzzy’ movie with a ‘happy Hollywood ending’. It is, nonetheless, real and accurate. If the author did not grow up as the child of addiction, they had a whole lot of input from people that grew up in the chaos of addiction. You cannot ‘just’ write this. And every actor and actress did their homework well. I tip my hat to the entire cast. When I feel like my life is being played in front of me, that says it all. There were moments I literally did not see “Violet Weston”, I saw my Mom. The way she swayed back between being kind to nearly evil made my hair literally stand on end. Of course as anyone with PTSD can tell you, we tend to ‘flash back’ to those events that made us who we are. We do NOT live in them. We get PAST them. However, when presented with something that ‘puts us there’, we cannot help but be back in that very moment. It is an element of PTSD that just is what it is.

Osage2aI feel this movie should be mandatory for every Psychology Class and any Class, College or High School, dealing with addiction. The addiction does not matter. The collateral damage is the same. My Mom did a lot of things that I could easily have not forgiven her for. However, I did. They are long forgiven. The only thing I ever asked of her was to get help for her addiction. I told her when she finally reached out for help, I would be her biggest fan and cheer her through the entire way. In the end she died for her addiction and of her addiction and I, still her ‘protector’ or maybe even an ‘enabler’ to a certain extent, out of respect, choose not to disclose the details of her death. I tell only my closest most trusted friends. It is sad. It is pitiful. And it is the most lonely death one could ever imagine.

Do not get me wrong, this is a fantastic movie. I do not want to give the impression that is is a sad, sorrow filled, downer of a movie! It is not that at all and most people will find Streep hilarious especially the ‘Eating the catfish’ scene! I laughed plenty through the movie and Paul enjoyed it very much! This movie did lead me to another train of thought: what if the stress of living in this mess was the true start of this mess I am living with now? I probably will never really know. This I do know: Addiction is a horrible disease that affects not just the user, it affects countless others. The others affected are affected their entire life time. If you have Fibromyalgia, think back: was there trauma in your childhood? Another train of thought: if an imperfect someone in your life is really trying to right a wrong, at least they are trying. The “Violet’s” of the world just carry on their venom and see no wrong in it. I hate spoilers so I am not going to say a word about the ending other than we heard some people around us that were disappointed or wanted it to end another way. Paul and I? We ‘got it’ ; we so, so ‘got it’. Until next time, K.

In this scene (this is not the last scene), I think I would have just kept running!

In this scene (this is not the last scene), I think I would have just kept running! I can so relate to how Barbara was feeling.

 

The Tangible Tales

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If you look up the word tangible in the online “Merriam-Webster” dictionary, the first thing you will see is the following:

http://www.merriam-webster.com/dictionary/tangible

1tan·gi·ble

adjective \ˈtan-jə-bəl\

: easily seen or recognized

: able to be touched or felt

In the world of chronic pain when we talk about tangible conditions, we are generally referring to those issues that can be seen on scans and images or be detected by other testing. In other words things that can be seen and pointed to. So many of us that have chronic pain…. especially Fibromyalgia…. spend a great deal of time “proving ourselves” as our pain is word of mouth as well as muscle knots that can often be felt. Sometimes, but not always, our blood work is a little “off” but nothing earth shattering.

In my situation I have both tangible issues and issues that cannot be seen by scans. However, it seems as of late, my tangible issues have overtaken my Fibromyalgia in the great “race” for which conditions are wreaking the most havoc at any given moment. Hands down, my neck is the number one culprit.tangible2In the last year and a half, three scans: A regular X ray, an MRI and a CAT Scan all revealed the following: I have 2 disc herniations, degenerative disc disease, osteo-arthritis, severe kyphosis (a reverse curve aka a ‘hump neck’), numerous bone spurs and the worst of all of these, severe stenosis on every level of the C-Spine as well as T-1. I was sent to one of the two best orthopedic doctors in the area. He said he would not touch my neck, but sent me to the other one (who was in a different practice; a rival), and this Doctor agreed to take my case. However, I was too afraid to have the surgery a year ago. I still am but fear that I have declined to a point to where I am going to be left with no choice soon.

tangible3Nearly all of the time I have little to no feeling in both my hands. Most of the time my legs and feet are at best ‘pins and needles’. The scariest part comes when my right foot ‘contorts’ or goes into a painful and uncontrollable ‘Charley Horse’ like spasm that I have to just ride out. Paul comes and rubs my foot as it contorts without anything I can do but just let it go. Sometimes the spasm is done inside one minute, other times it goes for over five minutes. The major downside to this spasm is I fall. And when I say fall, I mean I am down like a 5 ft 8 in rag-doll. I have fallen in all kinds of places but since I am home most of the time, I usually am able to catch my falls someplace within my own home. A few of the falls have been hard, including the pavement and cement stairs. Paul has witnessed at least one fall first hand and as he said, it scared him senseless. I feel like the “Elephant Man” much of the time. If you are reading this and you remember that movie (I am showing my age), The Elephant Man or Joseph Merrick of the United Kingdom could not sleep laying down because the weight of his head would suffocate him. Now I am blessed not to have such a tragic condition as Mr. Merrick, God rest his soul, however, I do get the not being able to lay down scenario. I have not slept laying down in a bed all eight hours of a night since 2011. The stenosis in my neck causes such an enormous feeling or pressure on my head that I would end up with a raging headache if I dare try to sleep laying down. There is no way around it. It just sucks. tangible4There is one thing I have been assured of: It will only get worse. I also have arthritis throughout my lower back. This has been detected in the last few months. The one area I never actually had a lot of problems was lower back. The key word being, was. Now it is sore most all of the time,  and at its worse if I have been on my feet for any length of time….. even ten minutes.  Yet I still fight for my disability after three years (stay tuned for a later post on the subject of how miserable and broken our disability system really is). I still put on my ‘happy, happy’ game face as to not dare be a “Debbie Downer” for all the world to see. Dare I actually open up and be honest about my life and the struggles face on a day to day basis? That is what this little spot on the internet is for as well as the occasional ‘bad day’ on Facebook.

This is one of 100's of views of my MRI, a 'soft tissue', very detailed 'magnetic view' of my cervical spine. One does not have to be a health care professional to see about 1/2 way up it looks like a multi-car pile up or hot mess. The pressing on the spinal chord is clearly visible. This in turn compresses all signals and feelings to all other areas of the body.

This is one of 100’s of views of my MRI, a ‘soft tissue’, very detailed ‘magnetic view’ of my cervical spine. One does not have to be a health care professional to see about 1/2 way up it looks like a multi-car pile up or hot mess. The pressing on the spinal chord is clearly visible. This in turn compresses all signals and feelings to all other areas of the body.

These are four of 100's of 'slices' from my CAT Scan of my Cervical Spine; a very extensive nuclear image which is like an x-ray, except much more detailed. Again, like the MRI, one does not have to be a health care professional to see this is one messed up neck. Very visible here is the severe kyphosis (reverse curve); the *worse* the first orthopedic Doctor (who is considered one of the best in the area) said he has ever seen. He refused my case because my neck is so bad. Also visible is one of many bone spurs. This is a very wicked one, hooking over about midway. It is not hard to miss. The degeneration is visible and one of the herniation's is visible (C1/ C2) because that actually herniated so long ago, those two vertebrae fused themselves together. They are at the top and look like a little 'hat' tipping to the side.

These are four of 100’s of ‘slices’ from my CAT Scan of my Cervical Spine; a very extensive nuclear image which is like an x-ray, except much more detailed. Again, like the MRI, one does not have to be a health care professional to see this is one messed up neck. Very visible here is the severe kyphosis (reverse curve); the *worse* the first orthopedic Doctor (who is considered one of the best in the area) said he has ever seen. He refused my case because my neck is so bad. Also visible is one of many bone spurs. This is a very wicked one, hooking over about midway. It is not hard to miss. The degeneration is visible and one of the herniation’s is visible (especially in the lower left picture, C1/ C2) because that actually herniated so long ago, those two vertebrae fused themselves together. They are at the top and look like a little ‘hat’ tipping to the side.

 

 

Fibromyalgia on its own is a struggle enough. Along with pain and fatigue as well as the array of collateral damage that bombards our body, many of us have tangible issues to deal with such as arthritis, disc herniations, stenosis, etc. It is like piling more on an already weak structure. Pretty soon it gives way , cannot bear anymore and collapses. The only ‘up side’ to having tangible medical conditions is that no one can accuse you of ‘making up’ your condition. If they dare to all you have to do is pull out your scan and report and point them to your troubled spots. Pictures do not lie. I was tempted, upon receiving the radiologist reports, to have the edges of the report gold tilted and special delivered to all those in my life who accused me of ’embellishing’ the truth of my pain. Then I realized Karma would take care of all that and it was not worth my time or concern. Until next time, K.tangible_large