OT : Let me be your Punching Bag........

Discussion in 'Fibromyalgia Main Forum' started by mrpain, Jul 31, 2006.

  1. mrpain

    mrpain New Member

    With the weather so hot and this illness so painful & crazy, and the hussel & bussel of daily life, let me be your punching bag. It's good to release the tension and just unwind.

    If I've ever made anyone angry on this board, let me have it! I make mistakes and sometimes put my foot in my mouth.
    Even if I haven't made you mad, go ahead and cut loose. I can take it and you'll feel a lot better.

    My goal is to be a release for you. I do come on here to learn and to share, and I feel I've made some friends, but reading some of the other threads every once in a while I see where people start to get ticked off and have their feathers ruffle. But that's human nature and like all close families, it's alright to agree to disagree sometimes..

    So in closing, if I've ever been the cause to ruffle your feathers or tick you off, just know it wasn't on purpose. I try to be as warm, friendly, curtious, and understanding as I can be. And I try to respect everybody's point of view. But sometimes I know we've just had a bad day. So here's a thread for you to let it out! Or if you just want to talk it out, that's theraputic too. If no-one responds, then I'll know to delete this and that it was a bad idea. Won't be my first and it won't be my last.
  2. 1sweetie

    1sweetie New Member

    I just want to thank you for stepping in on one that I got involved in a few weeks ago. It was nice to hear a voice of reason. Thanks for that. I don't need that in my life...but who does.
  3. mrpain

    mrpain New Member

    1sweetie- I always blame it on brainfog but right off hand I can't recall which thread your referring to but thanks for your kind words.

    fight4acure- your reply fits the thread and I'm sorry your going thru it right now but I'm glad your doing 50% better. So anti-viral meds have made the difference. Hopefully you'll continue to improve..
    [This Message was Edited on 07/31/2006]
  4. victoria

    victoria New Member

    MrPain -I've never seen you say/do anything offensive, personally.... most people here are so helpful... usually there is just a misunderstanding as it can be so dificult to communicate one's tone of voice in words.

    As for health care, yeah, the situation is sucking more and more... I have a lot to say on that LOL; besides so many here and myself, I know so many others who are having difficulty. I made a post in reply to Ephemera's post about a NY Times article expanding on my disgust...

    didn't even go into about my son's problems --

    like fight4acure, my 18 yo son with chronic lyme is in a classic catch-22 situation:

    he's not an adult if he lives at home, but state programs won't finance him unless he is (cut-off is 21); but then SSI won't consider him, they 'say'... Then because he is eligible for SSI, patient assistance programs will not consider him. to help with cost of RXs... and my hospitalization won't even cover him for that emergency (being hospitalized) since he is 18 and not a student.

    And of course SS is trying to disqualify him by saying we are supporting him by paying his medical bills and living costs on a loan basis out of what resources we have for retirement. I think in the end he will get it, but in the meantime it is maddening... caseworkers etc will not listen or lift a finger. It is like we are supposed to let him go homeless and no med treatment in order to qualify.

    and on and on it goes, gets even more complicated if I explained more.... Grrrrrr! That is my vent tonight!

    all the best,
    Victoria


  5. lenasvn

    lenasvn New Member

    Fight had some good points there.

    I got another dilemma. Getting diagnosed with this DD in the US is longdrawn and filled with snotty remarks/ (or non-verbal)responses from PH's in the meantime.

    So here is the deal: After I had my daughter 2 years ago I've gotten much worse than before, it was liveable (sort of) before I had her. So long story short; I had to start recieving cash assistance from DSHS. They want you to work fulltime. I was WAAAYYY to sick, could barely walk down the stairs to take my son to school.

    DSHS said then that a doc had to write papers explaining/ diagnosing me. I am yet to meet a doc that would diagnose me. My current doc said "I have no clinical evidence to give you a temporary hold on workfirst (DSHS) activities".

    I had to get off the cash assistance or start working fulltime. I got off the assistance of course, which leaves me and my 2 children on $460.00/mo in childsupport.

    I am managing, but the deal is that the system does not have protection for people that have no-diagnosis- we end up in the cracks. We cannot apply for SSDI without a diagnosis, we cannot live on DSHS (not even the GAU for disabled, since (you guessed it!) we're not diagnosed yet!).

    We cannot improve via meds- since we got no diagnosis. We go to docs who look at us like we're hypochondriacs.

    I have no intention of asking you for a resolution, but I bet you know we ladies just need to "vent" and I already feel so much better! :)

    There MIGHT be a light at the end of the tunnel- a Rheumy visit in Seattle in September. I had to cancel one in July since my kids and me got really ill, and besides, my doc never filled out the paperwork for transportation assistance to there from Walla Walla (500 some miles away)(another rant).

    Thanks for listening, MrPain!

    Fibrohugs

    Lena




    [This Message was Edited on 07/31/2006]
  6. mrpain

    mrpain New Member

    Your right, most of the people on here are very helpful and are trying the best they can.

    How long has your son had lyme disease? What are they doing for him? I sometimes wonder if it's posible that I may have it also..
  7. mrpain

    mrpain New Member

    Thanks! Wow; I didn't know you had such a hard left jab! You must be feeling pretty frisky tonight. You pack quite a punch!
  8. mrpain

    mrpain New Member

    Your story is almost like the picture in your profile. They just don't quite see you. My doctor hasn't officially diagnosed me either. I sometimes feel like a ghost walking in to see him. I can see him but he can't see me. I feel like just another number.
  9. victoria

    victoria New Member

    lenesvn --if my son hadn't been 'lucky' to come up with positive blood tests, he would have even been worse off as all his regular tests came up 'normal' and the internist had no idea what was wrong with him Or what MD to even send him to --

    --altho he agreed that 'something' was wrong with my son... he had a pulse of 48, lost weight, & low BP, plus the migrating joint aches and pains, carpal tunnel, paraesthesias, brain fog, short/long term memory problems, hyperinsomnia, unrefreshed sleep when he did fall asleep.

    Mrpain - after his regular tests came up normal, just like mine always have, and 1) due to the fact that I have been responding to the Marshall Protocol, plus 2) that he'd spent so much of his childhood outside, 3) people have increasingly shown up with llyme or other tick diseases that were previously dx'd with CF/FM........................

    I figured Lyme was a good possibility.

    So I read the info at ilads.org and went to a message board where people could post IM to you about good doctors. Found there were no good ones in my state, so took him to the closest one (luckily only 200 miles away.) He was positive according to CDC standards, altho he never had a rash (fewer than 50% do).

    Since then a woman in my local support group of about 8 people has shown up CDC positive, our one lone male member is now awaiting blood tests results as he has exhausted other possibilities. A 3rd knows for sure she had Lyme in early 90s and never right since, but her doctor will not listen and/or test her, much less give her a trial on abx.

    No I have not been tested myself, don't have the $$ to spend on myself right now, it is going for my son. I know he'd have been dx'd with FM if this hadn't been caught, he was so much worse than me by the time he was 16-17. He is trying different abx for suspected co-infections.

    Go read the posts at the Lyme board here, I've talked a lot about my son's treatment there... and others have told their stories.

    It is worth checking out, as is Chlamydia Pneumonii(CPN), mycoplasma, and other types of stealth pathogens.

    all the best,
    Victoria


    [This Message was Edited on 07/31/2006]
  10. lenasvn

    lenasvn New Member

    I like your decription!
  11. mrpain

    mrpain New Member

    I guessed I zigged when I should have zagged..........
    Well try to cool down and we'll go another round tomorrow.
    It's 11:35 here and I need to hit the sack early tonight. I'm going to talk to the research clinic in the morning but doubt very seriously that I will join. Then I have to take my daughter to the DMV to try to get her driver's license. Have a comfortable night if possible......
  12. tiredgayle

    tiredgayle New Member

    Lena,

    Hopefully when you see the rhumy you will be offically dx with it and then have the doctor fill out the paper work for you so that you can apply for ssd.

    I had a fight with the socail security office, but finally won my case. I made sure when I answered all the questions on the form I didn't just answer yes and no, etc. I attached papers writing my every waking day and what I went through and I had family also write.
    I was told by my social worker that I would probably be denied as I don't have cancer or look sick. I told her well they can change bodies with me for a day and see how I feel.

    Fortunately I was not denied, so I didn't have to appeal it.

    So hang in there and get that dx so you can file for ssd.

    God bless
    Gayle
  13. suzetal

    suzetal New Member

    Heres a knock out just for you.

    You have not posted a picture yet.And I'm sure we all want a face behind that name.And also someone who cares so much about his fellow suffers should let us see him.

    So Ill knock you out for the evening .

    Sorry just kidding about the knock out .But I am not about the picture.

    Hugs>>>>>Sue For Every Day A New Dawn Will Come.
  14. lenasvn

    lenasvn New Member

    See how he got away with that one!!?? LOL!
  15. Cromwell

    Cromwell New Member

    You are always so nice. How could you ruffle feathers. We all just get oversensitive is all.

    Love Anne Cromwell
  16. blessedmom2four

    blessedmom2four New Member

    can i kick too, my back hurts to bad to get any good punches in.

    i always see your kindness and humour
  17. KateMac329

    KateMac329 New Member

    Okay here goes....
















    WOW! That feels so much better! Man, thanks for letting me get that out. It has been bothering me for quite some time now and I just needed to let you know about it.

    (((BIG HUGS)))

    kate

  18. mrpain

    mrpain New Member

    Thanks all! Ya'll make it worth coming here. I wish you the very best. And thanks for the hugs after you beat me half to death. Kidding about the beating.. But I did ask for it. I'll try to work on that pic so you'll be able to shoot darts at the screen. Take care all......

    PS- And yes, kicking is allowed. But one spot is off limits!
  19. mrpain

    mrpain New Member

    You've changed your picture since yesterday.......You must have done your disappearing act, and now your in clear focus. Very nice picture. Your a pretty lady.
  20. tonakay

    tonakay New Member

    No jabs at you but I'd sure like to jab mother nature. I am sick of being cooped up in this house with the dang air turned on. The heat and humidity are horrid in Ohio right now. I usually just run my whole house attic fan with my windows open but can't hack it in this weather.

    Jeez.... may as well be butt deep in snow stuck in here with all the windows closed, I can't hear the birds! WAAAAAAAAAAAAAAAAAAA

    Ok, I'm done now and I feel mucho better! Thanks Mrpain

    Hugz,
    Tona