Open letter to Linda B

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Posted by Carl D ( on October 15, 1999 at 04:32:11:

In Reply to: CARL D drummer and anyone else that pity`s............ posted by Linda B on October 14, 1999 at 12:48:52:

I must apologize, for this is way out of hand. First off, I NEVER forgot the people who sent me meds(and as for the ungrateful bastard quote, yes I am a bastard, I have no parents - and I know who helped me in the meds dept. and it wasn't you - no offense, but true - Claudette, thank you for the Stadol spray, Craig helped me get the rest of my prescript - Annie sent me a care package along with some verapamil - and Phil C, if it wasn't for him - I would not have seen the specialist, for he helped reach out to me and started a medical fund for me to help with my specialist appt. and also help get some meds, and people like Lars and Donald contributed, Nancy and Claudette actually came down to meet me - I was thrilled, and Lance - say what you will (Jacks stuff he wrote was a joke) Has sent me hundreds of dollars worth of Methylcobalamin, Slumber spray and Pure Focus spray. Sure it hasn't worked yet - but he has reached out to me and tried something new. I am forever grateful for the help I have received from those who have helped me. Notice Linda - I did not list your name here , so where do you get off on calling me ungrateful? I do not mean to stir up trouble, just giving credit where it is due)
As for helping myself: I have done everything that a person in my position possibly can. I have gone to public aid countless times (spent 3 1/2 hours there Wednesday) Have called Psyches about the depression (and most are expensive - with cash upfront) Am now awaiting my third attempt at disability, Am on my sixth doctor, have filled out stacks of paperwork that would make most people cringe, have had two kidney infections due to meds, wrote my senator - the White House - My Congressmen - Oprah - 20/20 - Sought out state mental help for depression...I have tried every avenue. The truth is this: If you are a single male with no dependents and are not considered disabled,a senior citizen or blind - You do not qualify for help. I am seeking attorneys right now and three won't accept my case because I do not have a specialist standing behind me. My general practitioner did his best, but gave up because it wasn't his specialty. I have my medical records from him dated 12/18/98 in which he states that he is worried about my condition due to the fact he has done all he knows to treat my condition and still there is no progression. I have done everything I can. I lived in my car due to the fact I was homeless and had no other options at the time.
As for my whining: If you walked a mile in my shoes, you might understand. I go through extreme amounts of pain everyday and no one around me understands. Some are afraid of me, and others think I am no fun anymore. On this end of the spectrum - no one understands, and few people care. I have come to because people here know what the pain is like, whether chronic or not, and some even know how it can cause a domino effect and destroy their lives. Angela is a good example: her husband (the jerk who didn't deserve her) vamoosed, and she now has the pain of CH and heartache to deal with. I feel for her deeply. I know there are those on here who feel for me. I am grateful to God for those who have stood by me and emotionally supported me (sometimes that is all that gets me through). I have come here for support and understanding and camradrie - and if you call that self pity - so be it.
Yes, I have made the decision to leave the board due to the bashing from people like you and Chet and Dan H and such - But (as in the case of this last time) Drummer, Claudette, John B, Tim M and Angela and others encouraged me to come back. After your first Email, I though " I won't even give her the satisfaction of posting again to be slammed". But I have, thanks to others encouragement. I am not alone here. Not everyone suffers like I do and I don not suffer like some others do. The point is: we are all suffering! We are all in this battle together. Why fight amongst ourselves when there is a greater war. Cluster Headaches is not nationally recognized as a debilitating Illness. It is up to us - the sufferers - to make its reality known. After all, It has made its reality known to us!!!!!!!
Again Linda - I apologize. I am going through a hell apparently you can't realize - because you have not walked the mile in my shoes. I am sorry to have knocked your spelling mistakes - but if you look at what you were saying to me, I tried to make light of it instead of being hurt and affected by it. You have bashed and hurt me for no provoked reason. I never mentioned your name or emailed you, yet you made it your duty to reach out and hurt someone who is already hurting. What else can I say except this has gone far enough - and you can say whatever you want about me. Bash me all you want. I am an easy target. But this is the last time I respond to this nonsense - as I have too many troubles without adding to them. I am alone here ( and no sympathy please - unless you can relate). I suffer with what has been so far unexplainable, but is tearing my whole world apart.
I look at it this way: I am still here and therefore no matter the attacks - I am a survivor. Ever been a prisoner of war? Neither have I. Therefore I will not knock someone going through post traumatic stress, as some may be able to cope alone - and some may not. Right now I am a prisoner of cluster attacks, and everyone deals with pain and suffering differently.
What is my point to this long open post? I surrender. Yes, I need people on this board. I need emotional support. I need to have someone there like A hub or a David Chalfant or a Bob Kipple who knows what the pain is and know it's potential to wreck a life. I need Claudette to send me an E-greetings card to say she cares. I am going through the unthinkable. I am dealing with it the best I can. I do everything I can to combat the HA's and the discriminating system. The fact is that money talks and those caught in a catch 22 walk. I am still walking. Iburied two dear friends last month who were perfectly healthy and had a bright future. And while my future is uncertain - I am still walking. I don't know how, but I am still walking. I accredit it to those who have reached out in love and understanding and encouraged me to fight - no matter the pain and circumstance.
Yes, I am a sorry bastard, yes I am a freek. But I am still a human being. I still feel. Sticks and stones can break my bones - and words can cut very deeply. To those who only wish to badger and curse and criticize and condemn, this is my last response and explanation of myself. Bash me all you want - but as a sheep is silent before his shearers - I will be silent from here on out. Either try to understand or leave me alone. But if you must continue to take out your frustration anger and hurt on someone else and belittle them, then I guess I am an easy target, always have been. I will hitch hike to the convention to meet those who understand and those who don't. I would love to meet dave and phil and drummer and want to meet Bernadette (be there woman) and Bob Kipple. And if you wish to come and meet me - you will find me to be flesh and blood that feels pain in extreme ways like any CH sufferer. I do believe that only someone who is chronic, has nothing to help him deal with the pain, and has lost his future and his everything due to this cruel, unrelenting Illness can totally relate. And if you choose to eat and fellowship at the same table as me, God bless you for caring and sharing your pain - we feel it and sympathize together. To those who only wish to push the knife in deeper, vengeance is this Lords. I will not respond to these hateful damaging posts any longer. And why attack drummer for asking a simple question like " what is this?" which I interpret to mean " why bash someone else"? What ever happened to the old saying "if you can't say something nice - don't say anything?" Those who have taken timeto know me realize I am trying. Those who have reached out to me and given me the time of are priceless.
There is nothing left I can say. If you still wish to attack me, go ahead. I am not perfect(far from it) and will sometimes come off as grumpy and whiny due to the fact I suffer from extreme pain and sleep deprivataion. You may even want to kill me for my words - after all They crucified Christ for less - And he WAS perfect (despite anyones belief, the facts do not change - look up history and see for yourself, and no - I bash no one for thier beliefs be it Bhuddism or something else. I am not here to argue beliefs - that belongs on another message board altogether - I just know what I know and perceieve to be true based on evidence).
And with that exhausted lengthy response, I would just like to thank DJ for creating this Website. Otherwise I may have never met another sufferer and thought of myself as one of a handful of people suffering from this disease. As someone great on this board has said........


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