Individuality In Pain….


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Hello Luvs,

  We each feel like our own pain is the worst and that what we are going thru is the hardest and most devastating. In a way, this is partially true. That is because when it is” YOUR pain” then it ISYOUR” WORST, do you know what I’m trying to say?  What I mean is that everything can be challenging when you feel like your own story is the only one that’s difficult like this.  A friend of mine who is in my international  buddies/bloggers group *( ladies trying to reach out via blogging, to help those of us  in pain), she said this and I asked her if I could quote her here in my blog; she approved :
“Consider this idea from Brian Greene who writes on string theory in clear English : He points out that, in an infinite universe, each of us is at the center”. Exactly, my point and what I’m trying to convey here, today.   For example, one person may feel that whatever they are going through with chronic pain is the worst pain they’ve experienced in life…ever!, The patient may feel this way due to the possible negative outcome of certain treatments or the lack of treatment and/or empathy/ understanding. One person could feel that their situation is the very bottom of the “pit”. The very “fires of Hell” very well may be his/her situation. The outcome could be a “loss” of  the use of his legs;  to him this is the worst thing that he could imagine.  For another pain patient, or RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine. She may scared because she is so young with her whole life ahead.  For her this disease is taking so much;it is a thief of sorts!  She could lose so many possibilities in life. Maybe she has indeed lost so much already? What about the younger ones who’ve never been able to experience the love or the dream of being a mother and holding that baby for the first time? Maybe their dream is something different and they’ll not ever get to do the things that I got to do prior to my pain? There is much to lose at each and every stage, when your life gets harder  and then even harder to find things that make you smile again 

   As for me, I’ve lost so much… and 2002-thru now has been a bit more than very difficult. I mean how many people have : lost their mother, their whole family and even their 18 yr old daughter; after raising her almost solely as a single mother? Then later, missed her wedding, and never even knew about having a  granddaughter for a very long time; without ever meeting her? How many people have at the same time, suffered from:  a CVA(stroke), PTSD from a history of abuse, POTS/Dysautonomia/NCS, a heart attack, TBI w/ 3 yrs of PT,OT & TBI rehab; all while enduring 12 surgeries following a terrible car accident?? Also at the same time, still suffering an added degenerative disc disease,A trial fib, 2 pacemakers, pectoral muscles totally needing to be rebuilt and R.A?  All of that,along with “full body RSD/CRPSII”??  What if their RSD/CRPS is in their mouth, eyes, feet, legs, back, neck, knees and even into the chest wall and heart muscle?? Suppose this person also has nerve damage to ears, eyes, legs, feet, back, shoulders & hands? What if they have lost vision and obtained 2 hearing aids as well?   Have you guessed yet, that this person is me? I went from leg braces to wheelchair for anything more than 10 minutes walking now.  I have a motorized scooter  that I cannot use anymore because my shoulders hurt horribly and I suffer from Long Thoracic nerve damage and have other Neurological damage/pain too. I  have RA now and cannot take the immuno suppressant meds due to my immune deficiency disease called “Hypogammaglobulinemia”.  Oh yes, and I have something called  “Long QT syndrome”, an elongated QT line in my EKG, that gives no symptoms but is silent in that it only causes “sudden cardiac death”!  My heart also suffers from  MVP, Pulmonary valve hypertension, and tricuspid valve prolapse as well. I suffer every day from the TBI and the horrible forgetfulness and memory issues.  Not soley “CRPS memory fog”, but deeper memory issues which people don’t understand unless they have true Cerebullar damage to their brain because a man ran through a red light one day while fighting with his wife. Then there is the CKDII and Asthma….. just so many health issues that are  too many to mention here.

   After my heart surgery this past February, 2013; I found out that my RSD/CRPS  has traveled to my heart as well as my whole left chest area. I have so much pain in my neck, my knees, lower back, hands, feet, arms, legs etc, from several of these issues. At times, I’m afraid, I’m sad and I’m lonely. But I know that this is only “MY” worst, not any of yours; not anyone elses.  We all have our own certain issues that are specific to each of us.  We are all going thru each of our own private” HELL”.

  I’m so sorry for each of you in your own separate situations…I cannot take the pain “journey” for you or go thru it with you in a personal way. But I can be your good friend, walk with you, next to you; next to your heart. I can love you and when you’re afraid;  I can talk to you and virtually hug you and love you.  We all separately need to know that we EACH feel like we are at our “worst” at different times. It depends, but every person has real fears and real pain.. Our own worst is still something we own as our personal “worst” experience, just as we experience our own personal best situations.  I hope you all understand what i mean. I have recently read a story of poor woman in terrible pain with great fear.  I do understood her fear (to a point) and her pain (only from as far as I can draw from my own experiences). Then I saw read about another, younger woman in the same kind of horrible pain.  Both of their personal deep fears and pain came through. The younger one feels that she has so much to lose as she hasn’t even started her life yet.  Some of us already have had our children and we’ve had real jobs for a while and may have even been through some good &/ or exciting adventures prior to becoming a Chronic Pain patient. Maybe we’ve done some fun things in our lives or accomplished a goal?  Some of the younger ones in pain, have not gotten to do any of those things, not yet, anyway.  What I see through my advocacy with pain, Invisible Illnesses and RSD/CRPS;  is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the worse off”. We each may feel that our pain is  “the worst”…our own personal worst. When I think about it this way, I realize what we are all feeling and I can empathize better with others in pain. I know that they also share these same ideas and solitude in pain. I just so badly wish i could just fix everyone. I love you all so much.. We will not give up, we will not give in and we will not stop trying to fight for a life that everyone deserves.

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