SRS I Want To Be Heard Today

Discussion in 'On Topic' started by METALLlC BLUE, Jan 31, 2005.

  1. 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.
     
  2. I'm also really pissed that I was allergic to the latest medication and that I had no choice but to end it prematurely. The only thing standing between me and overcoming this was a fucking allergy. That just is so upsetting for me. Give me chemo, give me interferon - I don't care how hard the therapy is; I don't give a shit I'll fight through the pain for weeks or months if I know it'll result in victory, but if it's going to kill me? -- What can I do but stop? I am so pissed that I had to stop that therapy. It's so fucking unfair because I suffered for 4 1/2 fucking weeks of hell while it fought the infection and then right when I was probably a few weeks from moving over the hump [the worst of the pain and symptoms] - I had to stop.

    This is fucking bullshit.
     
  3. Whenever I discuss this topic new people read the forum and always ask a lot of questions about my situation. Rather than re-write the story, you can view the Bio that I posted in Health And Fitness a few years ago. You'll find nearly all of your questions are already answered there. It explains my life and the story of how I became ill.
     
  4. dave steel

    dave steel My Kung Fu is the best.

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    I read your post and I just don't know what to say. I do hope for you, that your health would return. I know that you have given some thought to becoming a doctor some day. You have suffered so much, I have no doubt that you would be an exceptional doctor. Many doctors lack compassion and mercy because they haven't suffered in life. I do pray for your complete recovery.
     
  5. Dave, it couldn't have been said better. Thank you for just reading and listening to this. I know it's ongoing and that it's hard for others - and you know it's hard for me. I would suffer in silence if I thought it would help to prevent others from being burdened, but it really doesn't help in this case. Thank you very much for your prayers and kindness.
     
  6. Bioanger

    Bioanger Self-Proclaimed moron

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    I feel the need to say a big "Thank you" for all the people you have helped here who haven't said those words to you already. This forum just wouldn't be what is now without the effort you have put into it!
     
  7. RyeBread

    RyeBread If you tell the truth you don't have to remember a

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    Michael.

    My wife and I are taking a class in communication. What I've gathered from said class, is that it's inherent in my nature to try to fix something that I see is wrong. Especially when people reach out to me, or tell me about a problem.

    I always had the attitude that they wouldn't tell me if they didn't want me to fix it.

    It took many many many iterations of one particular message for me to get it, that as you have said, not everyone wants things fixed. Many times, they want sincere compassion.

    Many many many people on this planet have never gotten to that singular realization. Even more simply don't care because they are too wrapped up in themselves.

    I know you have suffered physically more than I can fathom. That being said, I really can only fathom anybody else's suffering based upon my own - and even that isn't a stellar way to do so. I broke my hand pretty bad in highschool, and didn't even know it. Some people have a hangnail, and can't use that hand.

    What I've also realized, is that I don't have to fully grasp, or understand someone else's pain to be sincerely compassionate, and supportive of that person.

    I don't mean to infer that I'm not now acting insensitive by any stretch of the imagination.

    You have many many many outlets to be heard, and seen. I for one am happy to see you post, and take advantage at least here, and hope you continue to do so.

    As for me, I am rapidly heading to a happier/healthier state of mind. Combination of many life altering events in the past 12 months, physical health is better than it has been in over a decade.

    It's been 31 days since I had a drink. (note the date)

    I'm actually back up to 5-6 hours of sleep per night, as opposed to the 2-3 that I went for on months.

    I am finally starting to move more towards the middle ground of my mania/depression, and hope to maintain that progress. I'm sure I'll slip along the way - that's life - and I'm learning that it's ok to slip, that doing so doesn't have to equal the end of the world in my OCD frame of mind. Similarily if I skip a workout at the gym, I'm not going to gain all 30lbs back, or have my body atrophy.

    One final thought of where I'm focusing my efforts - it has always been a struggle for me to remember my blessings, instead of my pain, fears, and what I don't have. I have made it a point to not overwhelm myself by counting each and every blessing day by day, but simply to just think of one blessing every single day.

    That, and the bright sunshine today certainly helped lift me out of what started to be a HUGE funk today. I can only hope and pray that I can continue the efforts.

    What helped start me on this path, is hearing the horrible story of a late term abortion survivor... Her mother had been injected with saline solution to trigger a spontaneous "birth/abortion". She didn't die as is typical, instead was born "premie".

    This woman had every right to curse the ground, the world, her very existance - talk about feelings of rejection, and lack of self worth.

    Instead, you could just hear it in her voice - she cherished each and every day, even given her physical handicaps and deformities. I realized that if she could be that genuinely happy, why couldn't I? Do I pretend to think for a moment that the mentioned story has "cured" me from being unhappy? No fucking way. But more and more, some higher power has been giving me those examples, and more and more I have been forced to confront myself about my unhappiness. I only hope that said higher power keeps me honest, and doesn't allow me to slip back.

    I will not minimize your pain, or suffering, so please do not construe this as an attempt to do so. You have had a helluva ride. But you also have many blessings. :)
     
  8. civicmon

    civicmon got all my game from the streets of california.

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    I dunno what to say bro.... :hug:
     
  9. Darketernal

    Darketernal Watch: Aria The Origination =)

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    Care,for all is like a bonsai tree

    . Talk to your doctor about receiving the Lyme disease vaccine, called LYMErix.

    2. Consider receiving the vaccine if you are between 15 and 70 years old, don't have joint problems, and are not pregnant. Also, if you live or work in grassy or wooded areas, you should consider being vaccinated.

    3. Receive three doses of the vaccine over the course of one year if your doctor feels LYMErix is right for you.

    4. Get dose number one, preferably in March if you live in the Northeast. The shot will be given in your deltoid muscle. Then get dose number two a month later. The second dose should be given before the start of tick season, which, in the Northeast, is April.

    5. Receive dose number three one year after receiving dose number one, again, before the start of tick season.


    Tips:
    The highest incidence of Lyme disease is in children ages 2 to 15 years. Unfortunately, the vaccine cannot be administered to children less than 15 years old.

    A second Lyme disease vaccine is awaiting FDA approval.

    For more information about Lyme disease, call the American Lyme Disease Foundation at (914) 277-6970.

    Wear protective clothing when hiking through tick-infested woods and fields, and use tick repellent. If you do find a tick attached to your body, make sure you remove all of it, including the head. Check the tick closely to make sure you've gotten it all. (See "How to Remove a Tick.")


    Warnings:
    If you have any questions or concerns, contact a physician or other health care professional before engaging in any activity related to health and diet. This information is not intended as a substitute for professional medical advice or treatment.


    Would you be interested in this vaccine?
     
  10. Darketernal

    Darketernal Watch: Aria The Origination =)

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    I found some more though

    Several antibiotics are effective in the treatment of Lyme disease. The present drug of choice is doxycycline, a semisynthetic derivative of tetracycline. Even patients who are treated in later stages of the disease respond well to antibiotics. In a few patients who are treated for Lyme disease, symptoms of persisting infection may continue or recur, making additional antibiotic treatment necessary. Varying degrees of permanent damage to joints or the nervous system can develop in patients with late chronic Lyme disease. Typically these are patients in whom Lyme disease was unrecognized in the early stages or for whom the initial treatment was unsuccessful.

    In 1998, the Food and Drug Administration licensed the LYMErixTM vaccine against Lyme disease for human use . LYMErixTM contains lipidated recombinant outer surface protein A (OspA) of Borrelia burgdorferi sensu stricto, the causative agent of Lyme disease in North America, adsorbed onto aluminum adjuvant. It was indicated for use in persons aged 15-70 years. Three doses of the vaccine are administered by intramuscular injection. The initial dose is followed by a second dose 1 month later and a third dose 12 months after the first. Vaccine administration should be timed so the second dose and the third dose are given several weeks before the beginning of the B. burgdorferi transmission season which usually begins in April.

    The vaccine is targeted at persons at risk for exposure to infected vector ticks. This risk should be assessed by considering the regional distribution of the disease and the extent to which a person's activities place them in contact with ticks. A Lyme disease risk map (below) is available from CDC. Vaccination of persons with frequent or prolonged exposure to ticks in areas endemic for Lyme disease is expected to be an important preventive strategy. Recommendations for use of the LYMErixTM vaccine have been developed by the Advisory Committee for Immunization Practices of the CDC and are available at CDC Lyme Disease Vaccine Recommendations.

    In February, 2002, the manufacturer of the FDA-approved LYMErixô Lyme disease vaccine withdrew it from the market, reportedly because of poor sales. However, several other effective preventive measures remain available to persons living in areas where the disease is endemic.
     
  11. Darketernal

    Darketernal Watch: Aria The Origination =)

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    I can only hope that by this and other means you will cure quickly :hug: hang in there.
     
  12. johan

    johan Active Member

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    As for antibiotic treatments, some new research suggests that antibiotic treatment isn't very helpful.

    Here's a link to an NIH affiliated study on it.
    http://www2.niaid.nih.gov/newsroom/releases/chroniclyme2.htm

    Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment

    Results of the first randomized, placebo-controlled, double-blind trials testing antibiotics in patients with a stubborn form of Lyme disease-those whose symptoms persist after standard courses of antibiotics-validate that these patients suffer significant pain and other disabling symptoms. The two trials found, however, that a 90-day course of intravenous and oral antibiotics was no better than placebo at improving these chronic symptoms.
    Because of their potential importance to Lyme disease treatment, The New England Journal of Medicine is publishing these findings today online at http://www.nejm.org. The report will appear in the July 12th print edition of the journal. The studies were funded by a National Institute of Allergy and Infectious Diseases (NIAID) contract to Mark S. Klempner, M.D., of Boston University School of Medicine.

    "Our results suggest that we need to define the cause or causes of the debilitating, persisting symptoms experienced by some patients with Lyme disease. Understanding the origin of these symptoms should lead to more effective therapeutic approaches to ameliorate these symptoms," says Dr. Klempner. "Based on experience with other chronic infectious diseases caused by persisting bacteria-syphilis, tuberculosis, and ulcers, for example-we think it is unlikely that a longer course of treatment or different antibiotic combination would result in greater improvement than what we found in these studies."
     
  13. Peyomp

    Peyomp New Member

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    I read that too, but was hesitant to mention it.

    Just curious: do you monitor your thyroid levels?
     


  14. The vaccine was a disaster. It was taken off the shelf a number of years ago and caused illness in a lot of people - most of them led to chronic illness just like me. Additionally it didn't/doesn't work on patients already infected.
     
  15. I've already seen all of these studies. Kemplers study is a pity and tragic given the misinformation it spread throughout the medical community. When peer reviewed it was found to be severely flawed.
     
  16. Bioanger: Thank you for your kind words and ongoing support. I give what I get, and I appreciate the support a lot of people have given me.

    RyeBread: Thank you for sharing more about your situation and the things you're dealing with. I also thank you for understanding my feelings on this while still sharing. Your ESH is nice to read about and gives me hope that I'll be able to feel well enough one day to be free from my situation.

    Civicmon: Thank you for just reading it and taking the time to post a response in support. I don't think there is a whole lot that anyone can say or should say. I think it's just a painful process that I'm going through, and that as difficult as things are I still have to wake up everyday and try to live it to the best of my ability. If existing is all I can manage, then that's good enough as long as I'm giving all I can.

    CasualJesus: I appreciate your understanding. I hate my situation and I'd do anything to change it - but I can't do everything, it's just not humanly possible. I just keep doing what I think is right, and I hope it will end in a constructive way. If it doesn't it wasn't because I chose wrong, it's because enough information wasn't available at that time.
     
  17. AntiSocialism

    AntiSocialism New Member

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    Wow. METALLIC BLUE, I've only been here for a few weeks or so as you can tell by my post count, but while reading the Aslyum posts I found that your advice was always heart felt and very touching for the people that needed it. You're right, you need to be heard as well. Man, I wish you the best of luck in everything that happens and I know you're a strong person just because I couldn't have held in as long as you have with the faith that you're providing for so many other people. You're truthfully an inspiration. As corny as that might sound, it's true from my viewpoint. I'm not really adequate in this area and there's nothing really I can say other than thank you and I wish you the best of luck.
     
  18. Thank you. That means a lot. I've spent the entire week resting, and while I am recovering from the worst of everything it's still a tough moment to moment process. My ability to cope comes through sharing with others - and then having others remind me to keep going. When others tell me that it's all worth it even if it hurts like hell, I keep going. My strength comes from those who support me. I'll keep reaching out until this battle is over. I appreciate you taking the time to just say some of these things and to help keep me going.
     
  19. Peyomp

    Peyomp New Member

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    Do you monitor your thyroid levels?
     
  20. BBQ Monster

    BBQ Monster New Member

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    I cannot thank of anything to say except my prayers are with you.
     
  21. That's more than enough; I really am grateful for the prayers.
     
  22. Mugwump

    Mugwump Guest

    You're cared for, MB. :hug:
     
  23. KatWoman

    KatWoman •••••••••••

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    Keep hanging in there :)

    :hug:
     
  24. wufei

    wufei New Member

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    i truly respect how you care for others here and keep on fighting on, and never give up.

    without your support, the assylum would be an empty place.

    :hug: wishing you well
     
  25. teo

    teo . => ? => !

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    wow - i read this and also the history thread as well. sure puts things into perspective and makes me grateful for what i have - i don't mean that in a condescending way. i can't even begin to imagine what an uphill battle this must be for you. :bowdown:

    don't let the lamers who occasionally make their way in here ruin it for you. if posting here works to release tension and frustration, then great. the healthier you are mentally, the better chance you have at kicking your symptoms to the curb once and for all.

    i wish i knew more about it so i could offer some suggestions or helpful advice, but i don't, so i'll just say, "don't give up". we're here to be your sounding board :hs:
     

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