After all of the things I've been going through lately I needed to once again write it here and share it. I am having problems coping with the loss and grief still that is my health and my life, and I've grown impatient and angry over the way things currently are in my life. I'm frustrated that things aren't improving to a degree that are consistent and practical. Everything that can be done, is being done - at least that's what all my doctors have told me. I'm giving -- as I've always done -- all I've got, but it's not enough. I'm well aware that none of you can help me directly with fighting this illness, and even if you could give advice I haven't the energy or will to explore new treatments. I am heavily invested in my current therapy and while it hasn't shown me what I wanted to see, I do trust the judgment of my physician. I've spent a lifetime in the medical system being shuffled and misdiagnosed, treated, only to see no improvements, but there was one difference, no one could ever tell me what exactly was causing my pain and symptoms, nor could they provide conclusive information and testing of the cause. Now I finally have objective medical testing that conclusively confirms I'm infected with an agent that is curable and causes the exact symptoms I'm suffering from, but I'm still not improving on the therapy to a degree I'm happy with! What more can I do but be patient? There are no simple solutions, and there is no instant relief that I'm aware of that suits me. I joined another forum where both specialists and patients converse, and the story is the same all over the internet. You survive for as long as you can; if you're fortunate the long term antibiotic therapy will cure you or at least possibly allow you to be functional enough to leave your house and participate in society; - but you'll continue to suffer relapse. Not everyone improves, but not everyone has the best specialist or continues long term therapy either. That is the hope, and that's something I've continued to work towards even when things have been very dim. I've done all the latest antibiotic therapies, I've had three long years of constant antibiotic therapy - and I'm still sick. Can you understand my grief and disappointment? I've seen some improvements during various therapies, especially the Tetracycline therapy - but the improvements quickly fade back leaving me entirely disabled again. My doctor told me it's very common for the duration and type of infection that I have to experience these relapses so often, and he said it will be years before I'm feeling better. He said "A couple years is a drop in the bucket for a patient as sick as you, it's going to take a very long time, but you'll get there." At least he's honest, but it's each day that passes my heart breaks all over again. I'm just grateful that there is hope, but at the same time it's like being in prison and never knowing when you might be free. There is no finality, no closure, only awful suffering. I simply have to live on faith and believe it can be done. What more can a tortured soul do? I feel as though I'm at the mercy of a situation where I've done everything I can think of to do, and now I simply have to wait to allow time to finish doing the rest of the work. This illness is my life, and I hate it with such fierce anger for what it's done to me. I sometimes lay in bed or on my couch sobbing because I am so crippled and limited. The ongoing agony is tremendous and all I want to do is breath. I'm dying to breath - I just want to be free. I want to be able to go outside without being in awful pain -- without being exhausted. I want to take in deep breaths of the cold North Eastern skies and then exhale and see the cold mist escape from my lungs. That is what I want. That is what I'm fighting for. With my situation I'm on a rollercoaster mentally. I'm on one rollercoaster because of the actual symptoms and depression caused by the infection, but I'm also on another rollercoaster of grief, anger, impatience and helplessness. There is a third rollercoaster as well, but I tend to ignore that one. That one is dictated by the controversy, and misunderstanding of the people in my life who don't understand why I'm so sick, or why I'm not improving. They want answers I can give, and they make suggestions that I can't take at this time. Everyone wants to help, but sometimes in trying to help, they only hurt. I feel depressed by what I've lost, and I might not feel so let down if I wasn't additionally weighed down by the depression and symptoms of the illness as well as the misunderstanding, and societal pressure. None of this is my fault and yet I still have to swallow the bitter pill of the consequences that come with it all, and I am spiteful and hateful for it. I am extremely angry and yet I have no where to direct it, and no one person to accuse or blame. I'm a fighter, and I've always been tough. I've always been the best at nearly everything I've done - but this illness cut me down slowly, and it's cutting me down now too. Like an eroding cliff on a shoreline I'm wearing out, and I keep struggling to be recharged, to live just long enough to see better days. I get angry, and I fight, then I fatigue, then I get angry, and I fight, and I become even more fatigued, and then I begin feeling small and I despair. It is a cycle of punishment, and disappointment. The process has ended the same way every single day of my life for the last eighteen years. I feel demoralized and inhuman and I want my soul back. I want my body, my strength, and my passion ignited. Through all of this I've remained as vigilant, faithful and optimistic as a person can be when faced with overwhelming challenges, but I'm finding once again that I need support, strength, and inspiration from people around me. I usually don't find that talking here helps, but in this process, anything which helps keep me from isolating and alienating others is useful - so in that sense, it helps. I just want to be heard; I don't need advice. Feel free to share your experience, strength and hope - but save the direct suggestions because I've done everything I had the energy to do and I'm tired now of trying the latest ideas. I just want support and to know I'm cared for while I continue on this path. Tomorrow the Pastor will come to visit me [a different one], and he'll do healing prayers and offer counsel, and that's what I really need I think. Cliff Notes: See Bold.