Losing Hope, Losing Faith

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Jun 21, 2009.

  1. joeb7th

    joeb7th New Member

    Haven't posted in maybe 6 months.

    So disabled anymore. Don't have the energy to even take supplements or care anymore.

    Massive money problems. Advice comes in in droves...never a dollar though.

    This society draws the line there. It's as if no one wants to even talk about this reality.

    And when all the 24/7 money problems for years exhaust, depress and discourage you as much as all the 24/7 pain and weakness...the world is silent when you throw this reality out and try to tell everyone that this is killing you as much as this nightmare immune system stuff.

    Sorry for the depressing post. Just throwing my reality out there for the sake of doing so.

    Man oh man...man oh man.
    [This Message was Edited on 06/21/2009]
    [This Message was Edited on 06/21/2009]
  2. hensue

    hensue New Member

    Please do not give up! There are people that care like me and a lot of others on this board.
    Granted no one is throwing any money your way. I can tell you I have thoughts and prayers sent your way. I know these are just words but I want you to know that people do care.
    You have a right to feel sorry for yourself right now! There are a lot of people desperate for money and relief.

    Just wanted you to know I care and hang in there!! Something good will happen I promise.
    It is reality and it sucks for so many and I hate you are one of them.
    Take Care
  3. greatgran

    greatgran Member

    You have gotten some cares sent your way. I do wish I could do or say something to make you feel a little better. All I can do is say I can relate and will say a pray for you but I find myself feeling the same.

    Please post and even though it may be depressing to you it is reality and we need to hear how you are feeling as so many of us feel the same way but don't say it.

    Please keep posting and let us know how you are doing. Sorry I am of no help..

    God Bless and Prayers,
  4. ladybugmandy

    ladybugmandy Member

    my reality is similar. all i can do is cry and pray and hope.

    with every new illness, there are casualties and i feel like i am one of the casualties.

    the only relief i have found is in prayer and in talking to others who know how i feel.

    if you are in the states, i think ampligen will be available soon..perhaps it can help you? also, roche is giving out free valcyte to people in need, if you haven't tried antivirals yet...

    i heard that they are building some sort of living space for people like us - i think on land donated by prohealth...

    i also cannot keep track of all the supplements anymore. my mind is too foggy and i have little money left.

    its a mess.
  5. debshomeed

    debshomeed New Member

    I'm so sorry you have been going through this. Please hang in there. There are people who care and I am one of them.

    I have read most of your horrible saga of uncaring medical professionals in the last 2.5years. It is beyond belief how you got treated. I am glad that you posted as I have been thinking how you are. I'm sorry that things haven't improved for you.

    Please know that I have been praying for you and will continue to do so. I do pray for people on this board as it just breaks my heart the way we tend be treated and marginalised in our society.

    Please keep on keeping in touch.

    May God's love overflow in your heart

  6. joeb7th

    joeb7th New Member

    Even though your messages are words, they are so heart felt and sincere.

    Because I know they are sincere I appreciate them. I really really do.

    And I know so many are in the same boat with me. Financially wiped out as well as physically, emotionally and spiritually.

    God help us all.

    Yes, it all started with Levaquin. A large law firm has taken my case, however they don't know if they can get around the statute of limitations. I was damaged over 2 years before they filed my claim. With my luck, it my claim won't get past that obstacle.

    Yes, many of us had a "trigger."

    I have tendon pain and weakness all over my body 24/7. But, so many other body parts inside and out feel stressed and damaged at the same time. It's torture really.

    And often when my GI tract goes into the most extreme stress, depression kicks in at the same time...major depression.

    I think there is a connection to damaged GI tracts and depression.

    They say 80% of serotonin is manufactured in the gut. So, it makes sense that when this is damaged so is serotonin production.

    Also, malabsorption is definitely taking place with me. I can't seem to get many nutrients and hormones back to normal levels. Vitamin D, Iron, B-12, Testosterone, etc.

    Just a sad mess that never seems to get better.

    My new doctor lady says she'll okay me to go to the Cleveland Clinic for some "real" thorough studies. But, there are no funds to cover transportaion and lodging and co-pays here from California.

    Sad, my insurance will okay this visit, but I can't afford to go there!

    Thanks again. JB
  7. faithinlove

    faithinlove New Member

    Your post sounds exactly how I have been feeling. The financial part of this is just as bad as the other parts. All I can say is you are not alone and believe me there are many others feeling what you feel.
    I do not know if it will help the way you feel. It has helped me when I felt like I could go no more just to read some of the posts here. When I do that I really know I am not alone at all. I cannot give up.
    Please do not give up let hope just open up a little bit in your heart and read and always know we on this board know how you feel.
    Please post ever once in a while and let us know how you are.
    Thanks Faith
  8. DeborahLynn

    DeborahLynn Member

    I can identify with what you're saying; what has helped me so tremendously in the past is prayer. Prayer connects the human with the Divine. We as distant friends may not be able to help much, but He can. Please reach out to Him. He is our Helper. Much Love to you, and prayers for you, Debbie
  9. joeb7th

    joeb7th New Member

    I have complained for three years to docs about everything Fratti has exerienced.

    From my fingers to my toes I have pain and weakness. My nerve system seems haywire and it feels like it s being charged with painful inflamation at times. My shoulders are so sore and weak, my heels too., I feel dizzy when I walk, I am off balance, my GI tract is in 24/7 distress, I have panic attacks and tremendous anxiety. I soon got tinnitus and my vision got instantly worse.

    I have a hard time concentrating on things and finishing them.
    I am afraid to leave home, even for errands. Even driving makes me panicky!

    And when I present all these true symptoms to doctors they say it's impossible to feel all these things at once.

    They have no further advice for me. Just go home. And later I see personal comments on their reports to other doctors mentioning their views and takes that I am more a psych case than a physically damaged one.
  10. LonelyHearts

    LonelyHearts New Member

  11. karinaxx

    karinaxx New Member

    I dont know if you remember me.I was the one posting on adverse effects with ABX in ME/CFS/MS ..... and my story about ABX and finally the wheel chair.
    (After reading Dr. Meirleiers new discovery it makes even more sense)

    I can feel with you!
    Even though my health has improved a lot, i have not been able to get my financial troubles under control!
    My brain is just not able to function in the same way as before!

    I hope you stayed away from any ABX and you do need to test for fructose and lactate malabsorbtion! This test is not expensive.

    But of course you know all the stuff which could make you worse, you are not new here.

    My moto is still the same and it has helped to a certain extend; Eliminate everything in my enviroment which is known to play a role in ME/CFS!
    Toxins, ABX, Fungus (in the walls), Viruses (herbal or homeopth antivirals helped), fructose sugar out (no fruits), lots of fresh air, swimming in cold salt water (reduces toxins, viruses ,inflamation!!!!!!!!) , stay away Microwaves (reduces NKcells and since we are any way struggling with low NKcell function, staying away from anyting which can lower them even more ,makes sense) a good high protein diet but has to be easy on the digestion.
    I think this is more or less what helped me to get out of the wheel chair and the house.

    I hope this simple tips will help you.

    Other than that, a big hug and take care of yourself!!!!


  12. greatgran

    greatgran Member

    I am not sure what is wrong with me but when you described how you feel you were describing me. The nerve system seems haywire,the aches, inflamation, the weakness, and what really hit me was the dizzy when walking, off balance, the panic, anxiety , tinnitus 24/7, vision, And Afraid To Leave Home. I thought I was the only one that had all these symptoms and my doc thinks its all in my head so rather than find out the physical cause I am labled more a psych case also.

    I honestly don't have a clue what is wrong with me, they say cfs/fm but why the head and mental thing that is keeping me living in hell.

    Hope you find some answers cause I am getting to tired to care or search anymore. Oh, I have had antibiotics but not the one you are talking about. Where do we go from here.

  13. karinaxx

    karinaxx New Member

    those of us which are severly affected and have no disability payments are all depressed from time to time and this with good reason!!!!! This is not clinical depression, this is despair over the situaion! The pain, the hopless bad situaion we are in !!!!!! not knowing how to pay the next bill, because you cannot get up even to brush your teeth, day after day, is more than enough to cause despair.

    i feel it is hurtfull und without empathy for the situation to ask Joeb if she is diagnosed with clinical depression


    [This Message was Edited on 06/24/2009]
  14. faithinlove

    faithinlove New Member

    I just had to put my opinion on this post. I think we know when someone is talking about if we are depressed. I feel as if I am depressed to some point.
    It stops there though and turns into despair. That is the word for me because we have all these things working against us all of the time.
    If a person has a good healthy body they too get despaired about a situation but they do not understand us unless they have walked in our shoes.
    discouraged and despair are two words that makes me think of this dd,
    hugs to all
  15. lynncats

    lynncats New Member

    getting ready for bed, but skimmed thru your post, and I find it Non-offensive. Striaght thru the bull. It is ashame that WE have to live this way, and noone understands.


  16. quanked

    quanked Member

    Endless philosphies about money, aren't there? I have friends (a couple) who some how created some benefactors for themselves. Neither one is sick or disabled. I care for these people but I have a hard time with the idea that they do not suck it up and work at whatever they have to to pay their own way. I have even given them funds in the early years. Their new friends have much larger supplies.

    I have not figured out what bothers me so much about this situation. Perhaps I am just jealous. But what I can tell you is that they let everyone around them know how dire their financial situation is and how on the edge they are to ending up on the street. And this has worked for them. People bring thousands of dollars to their door and others offer other kinds of material support. I stopped helping them out sometime ago when I realized that I was short changing my family in order to help them. Now if they were disabled or had reasons beyond not liking to work under other "idiot" people, or working at jobs beneath their skill level I would have continued sharing what I could. Perhaps I am too hard on them. I do not know.

    This brings me to the idea that some kind of charity or organization needs to be created to help people with our dd's financially. Not to say we do not have other needs (I wish) but when one's life has crumbled around one in terms of health and functioning (and all that comes with these losses)then facing being out on the street seems particularly cruel and inhumane.

    If I had all my faculties functioning properly this kind of thing would be right up my alley. I wish it were still so. But some people on this board still seem to function well mentally. Perhaps someone could work with CFIDS Association and create a charitable leg for those of us in need and for those of us who can donate to the cause.

    Money cannot buy happiness but it sure can ease the suffering from the lack of it.
  17. skeptik2

    skeptik2 Member

    You would think, with the millions given to one of the national orgs that there would be some kind of investment(s) made to ensure some small pittance of income for those of us who can barely pay the rent, utilities, groceries, and telephone+utilities, right?

    No, patients give and give and give to these orgs and they get nothing tangible in return no matter how desperate they are.

    Now, I know the National CFIDS Foundation (ncf-net.org) has a small fund to help the desperate. Contact them if you are in those circumstances, ok? They know people who may help if you are honest and can prove your need.

    Hang on! I'm starting a lawsuit against the NIH and CDC soon; people are lining up to help me. It is time.

    See AuntTammies post about it...join in if you possibly can; you do not have to use your brain unless it's possible at times and for moments. Nothing is expected of you, but if you can find the energy to write to the law agents I have posted in very brief format there, please do so.

    Most of all, hang in, and hang on...lots of brilliant and kind people are trying everything they can to get help for us all.

    We care about you. We, too, are sick, but somehow we, too, have found moments of strength and are trying to use it to help us all..it only takes one moment at a time!


  18. skeptik2

    skeptik2 Member

    Hang in, hang on! We love and care about you.

    Can you file medical bankruptcy and get out from under any bills?

    Can you advertise on reputable sites for a disabled and/or chronically ill roommate? I live with two; it's like a dorm, and really helps when someone else is nearby who understands what you are going through. Often one of us is 'up' while the others are down, so the stronger one can help take care of the others. It really is a wonderful life, that of being together and helping one another survive.

    Please read AuntTammie's post about my lawsuit vs the NIH and CDC. It may bring you hope!


    Sending strength your way,