Read pain posts a min ago. If " a lot " of the things I have looked into, with all of the "go get em'" speeches keep u in a comfortable bubble of complacency, then the offensive nature to which you are struggling to find scapegoats for are ill placed! If How bad the extent of your hurt, directs the narrative of pain for all, then obtaining clarity is only singular! The things I've mentioned in my posts only pay homage to this ignorance. A lot of times I understate the severity to others, knowing full well that happy thoughts will not change n e thing. Pain is most definitely a state of mind. A damaged, misconstrued, foggy, confused mind! If u never have had the position or the pleasure of a, "colorful existence " with this disease then u are colorblind. There are plenty of forums that ?deal? with this hell, then let u know their narrative truly must be singular. Advances are made and then retracted for all. Personal feelings are those made by your singularity. Feeling like I needed to be compared to others has given me a baseline for m.s. Ive been at war with the world has been my life. Worked like a beast in all aspects of construction for a long time. M.s. isn't a state of mind, it is a disease that has caused more damage than I have the will left to defeat alone. With all these specialists (medically or socially) it gets hard to sift through the piles of shit. Telling me that staying active a decade ago would have been impossible. Human intervention has been minimal but someone telling me to watch my words carefully is a joke right? If someone is being argumentative with things I say well GOOD!!! If the puppy farts are clouding your judgement then to this i say climb back in your bubble....lol The severity of your condition has to matter at some point. Years of damage with simpletons at the head of my healthcare has left/continues to leave me wanting to say the least. I hope that more people read my posts and realize that for some life has never changed. This is not for them. If you feel like an insurmountable task is ahead, then good luck! I've felt this way ever since I was very young. Alcoholic, abusive father, junkie, unfaithful mother, and a slowly progression of m.s. gives me the right to ? Everything and everyone. Some have commented by saying a wounded soldiers strife, is more than that of a neglected child's. Ignoring the fact of a lot of different ways of living your life may or may not be palletable for many and to those I say 😐😶😑 When we leave room to be debated then that is human nature, but when I hear a lot of misinformation about something so life changing I tend to take offense to that. Some have none and some have crippling pain, so then the narrative has to leave speculation about something they know very little about or sit in anguish. Inspiration is as everything else, has its place. Many times I had to swallow the fact that we all suffer in some form or fashion but the reaction isn't always dependent upon our outlook on life. Solace is knowing what u have accomplished long before and after a dx. If you are met with hesitation, disbelief, anger, etc. Always ? Weather or not a stranger has ur best interests at heart or are they appealing to ignorance. Some will remain healthy, some rapidly decline, and others may be inconvenienced at worst. Do what I can but luring so many to a plateau of acceptance and peace is for the foolhardy. Not a shepherd nor a lost sheep, most will get it eventually. Trust the truth but know that pot to piss in gets gets deeper with every asinine or inconceivable notion that you will relate to the consensus is the definition of insanity. Differences are what make us but morality seems to trump logic. MY experiences have taught me the value of originality and the undervalued work it takes to be so. Depending on the field of study or occupation, it seems morality, however misplaced, will dictate many times, the quality of life. I'd pinch myself to make sure I'm still living and then the heat from my hell, and "PAIN" reminds me. I will continue to chuckle at the masquerade and continue to doubt when it's due. [Choosing to stay silent and accept stupidity as a valid excuse] Is why I will not eat food from a dumpster lid, so to speak!
Perplexed!?!?!?: Read pain posts a min ago... - My MSAA Community
Perplexed!?!?!?
We all suffer this beast in different ways, and I am assuming that you are quite angry with the life you are left with. I’m not going to suggest that I know what the hell your issues are and I’m glad that you have shared your story, it on the other hand, I can’t help but think that there is some help we can get through talking it over with a shrink. I have and it has help me cope with the feelings that I have. If I have read you wrong, please correct me. I can’t trust what I’m reading anymore. (It’s me, not you). Believe me when I tell you that without my painting and music, my life would be unbearable, so I try to do things that I’m capable of and push my limits on the ones that are becoming impossible.
I wish you well in the battle, I know in my heart that the demon will win in the end.
I’m just gonna try to make it a fight.
Craig
Often times as I've mentioned, Alabama doesn't have a patients back. 13-14 y.o is when I noticed that I am different in the way I was able to heal or recuperate. No insurance and docs that pride themselves on the on the fact retention isn't necessarily needed after m.d. Suicidal tendencies are a byproduct of this neglect. I've seen a shrink a couple times now, to no avail. I've lead an interesting life with the better portion of my adulthood progressively worsening. Reading, however possible it was, lead myself to the d.x not docs. Bitter was the old me but able to cope. New me is so confused by the fact that the consensus says people are related in alot aspects but when the narrative revolves only around ur familiarity then concepts of pain and depression are night and day. "Until you've walk a mile" isn't the comparison I'm seeing when I interact with the general population. I have many lesions throughout my c.n.s. After finding someone willing to put drug companies on hold, and stop chasing $$$ only then will I have a sunny disposition. If in general until those with elevated levels of disabilities are treated with common sense and we stop letting docs dictate the "quality of life " through patient quotas and use a little more deductive reasoning, then states like Alabama will pass laws like 2 years cap for legal action. Lost business and increasingly loosing mobility isnt something im willing to chalk up as ignorance anymore! Because of this pain "epidemic " i struggle with the fact that even after getting insurance i am still a pariah for suggesting the same things I've been complaining about for years has left me with extensive brain damage. 2 years now since I've had the barrel to my head but this is a characteristic of a brand new monster. I have developed the irrational fear of docs to the point of puking on the way to the docs with unearned fear and trepidation of the circus ahead. I miss singing/song writing, building, illustrating, etc. Not because a lot of these things are completely impossible but disabled isnt just a witty title, it describes the condition of my human machine. I say things not with malice or hate but I generally hate the fact that we all agree with one narrative of m.s. but rebuke the idea that difference will not be tolerated unless u comply with the moral shale they stand upon. Be not an accomplished artisan of deception as a lot of docs, but understand in general that this is real, I am real, and until others grow to accept the fact that we all have this but we're most defiantly at an impasse when it comes to logical conclusion. To say I'm just bitter and unable to process the thought I will have this FOREVER is another sign that looking at things realistically only exists in 1 person's narrative. I chime in when I'm able and will continue to be a pariah for my thoughts and actions. Thank u for trying to understand and I will continue to do the same.
Alabama! No wonder.
(Sorry that was the California sarcastic insides) ya know, singer/songwriters are a rare group of mentally deficient folks. (Myself included). The world needs us to say what most can only feel. It’s a gift and a curse. I find that I can’t stop thinking in rhyme and often drop what I’m doing to write the next best hook before I lose it.
Haha, sooo many crappy songs have been written by me and then you find a nugget! Keep writing and singing as long as you can. If you find yourself on the left coast, look me up. I’d love to share some of my crappy songs. It’s actually cheaper than therapy.
My friend, I am sorry that you took my post to that extent. But, I am glad you opened up.
I have no way of knowing of you're pain or anyone elses! I don't presume to. Believe me!
But, don't presume to know anyone elses either. Including my own.
The post is only meant as a starting point for ppl to open up. Kinda like you did. 😉 I know, I suck!🤣
You can't do anything about the past my friend, but you DID change your future! So hang in there! 🤗💕🌠
Thank you and the family members of this community for posting about pain issues. I have pain and I am not afraid to tell it to EVERYONE. It helps me to ask and learn about what other family members know and what him or her is going through. So thank you again to everyone for talking about their pain issues. Continue please. 👍💪🏽
I'm so sorry to offend n e one, I voice opinions and vent. My situation is dire and I say and do things without a filter. I am attacking no one and feel that a impass is where I currently stand. It's about the damage done and the unwillingness to accept another's narrative as the way I should conduct my life or expressions in my m.s. hell. I'm a realist to a certain extent!?! I have upgraded to severe amount of lesions, meaning it took 20 years of seizures, and brain damage before I was given a second look! I am not well like many of us but I am floored by remarks like "new patients may take something incorrect and ruin their life. "My experiences are completely authentic to my life. If I can suede someone to to dig a little deeper, as I should have, maybe pushing the issue will allow another to save a little more of themselves. I don't use scare tactics, only trying to express my condition and offer advice on things I am going through. I am a completely different person now and a black hole is pulling me in head first. I love being able to use my withering brain to hopefully understand why and how my life is less than. I feel and sympathise with those who have this, and I as I've said haven't a filter. Ur brain has the ability to rewire itself may be true but at the rate I am declining and damage done leaves a lot of rewiring. I want "newbies to know that if they have been turned away by ignorance, then keep trying. Please! Someone will see a way forward and maybe able to help when your helpless. I made a remark to my sister n law about feeling like I am in the gym, trying to climb the rope and struggling to ascend with the docs lightning my rope on fire. I only offer encouragement and my own experiences. Before I am to be lambasted for anything I only ask to be considered as I bring my life and experiences to the people who will not or are mentally unable, to keep reaching to find anything that will keep our beast from becoming a monster for others. Again Iam not trying to maime the already weakened state of others, only trying to offer a different perspective for those who know something isn't right and holding docs to a higher level of awareness as do I to their patients. Having no filter isn't a cop out rather a compass for those who are lost and also reaching! Plz don't think I am incapable of compassion when I helped others to survive when we could barely stand on our own two feet. I am an artist and maker of all sorts of things. Mark me as a delusional, curmudgeon with a plot to bring others down with me but my narrative isn't one of Ebenezer, rather one of brain damage and a longing for a place where u can feel again. I am not the same n e more but changes to the consensus will maybe allow for a better understanding of the time and place I am in. I only hate the ones who have helped foster the transition from hard working, husband, father and friend to a man of few cares which is solely here to make the only one who has been with me for all of my deteriorating, delerious moments of of frightening and affirming changes to both our lives. I do take solace in the fact that some are able accept the new me and understand the changes to all our lives without striking my thoughts with the clapping of a gavel. Again if I offend then I am sorry and again hope my misfortune will have others rethink and reestablish the reason we are here and try to prolong their time with us by questioning and expecting a higher level of awareness and civility when it comes to m.s. The many things that we can do to be not a fixture but with help and knowledge maybe feel better about being able to remain a part of their own lives. I enjoy being apart and learning from you all!
This is a safe place Fattius for all of us! That includes you! Besides, I have been offended by worse!🤣 So no you didn't, at all. We just ask that you please don't. And follow the rules and guidelines.
We like having you here. Your input matters.
I am sorry that they didn't know about Peds MS, back then! That you figured it out yourself is incredible! I give you kudo's!
BTW, I always want everyone to be be there own advocate! And learn more! 🤗💕🌠
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