Close to End of Rope

Discussion in 'Fibromyalgia Main Forum' started by Didoe, Mar 29, 2007.

  1. Didoe

    Didoe New Member

    My days are spent
    a)Trying to find doctors who understand Fibromyalgia without condemning it to a mental disorder or psychosomatic issue, B)Fighting with employers insurance company who stopped filling sleeping meds thru mail order, explaining to docs why they have to fax 10x, then mail then rewrite scripts because human resource person can't get script facts straight from insurance company to tell me exactly how to get and fill scripts due to new laws
    C)Asking employer for accomodations e.g. adjustment to work load and schedule with note from doc, explaintion of FM and then writing the specific detailed explanation and proposal they asked for
    D)Meeting new docs for new rounds of exams, tests and waiting for results
    E)Trying to work while doing the above
    F)Doing it all alone
    G)Doing it because life is unlivable under the current stress and load, doing it because a framework has to be in place for the future if I get progressively weaker and less functioning and have to be self reliant
    H) This week the papers are writing about people who paid for insurance for long term care being told they dont qualify for coverage for nursing homes and care after years of paying into the system, its a national scandal of insurance thievery, its clear there is no where to go, no one to rely on, there is nothing except what you carve and demand and scream for like an animal.
    I) This is the life I have and I have to look forward to.
    J) THis is hope, the joy and positive pleasures of living with FM and chronic illness in this country.
  2. meditationlotus

    meditationlotus New Member

    IT is terrible that we have to struggle on all levels. I am sorry for all of the difficulties you are facing.

    Is there anyone (a friend, or relative) that you could ask to help?

    Also, click on "Doctor's" above and see if there is a doctor who understands FM in your area. Also check out "Support Group".

    The CFIDS website offers info to doctor's to help educate them on CFS/FM. Maybe they have info you could show to your doctor.

    This is a wonderful message board with people who have been through equally difficult senarios. Hopefully someone can guide you with the legalities.

    Don't give up. You have our support and love. You will get the help that you need. Believe it.

    Hugs.
  3. jmq

    jmq New Member

    Just reaching out to you....wish I could just come over and have a nice tall strong drink of something with ya. ( That would be great with all the meds we are on!)

    I will not say "hang in there"...it sounds so inadequeate. BUT giving up will not make a difference...FIGHTING will. I never met you but just from the e-mails over the last month or so I KNOW that

    #1 You make me laugh when you know I need it
    #2 you are one of the most honest around so I can count on your feedback
    #3 You are fiesty and witty and I wish you could have kept your original name!
    #4 You are smart and powerful, dispite the pain. Whether you realize it or not, every time you push your way in and out of another doctors door, or your idiot bosses office, you are fixing a wrong.

    How funny...it has taken me about 30 mins to type this little note because I had to keep deleting naughty words that I want to say but cant ! I hope you havent fallen asleep reading this,...I just meant to say hi!

    jmq
  4. Didoe

    Didoe New Member

    no matter were i put my finger the dam breaks somewhere else, a life of leaks
  5. joeb7th

    joeb7th New Member

    You have probably read my postings.

    I have been through most of what you are going through. But not alone. Dear lady, my heart breaks for you.

    But my wife is on the verge of a breakdown with my suffering and moaning and complaining and inability to work and contribute financially which has us $60,000 in debt. She really is. Eventually I could see her leaving. Can't blame her. Most docs have her thinking I'm more mentally than physically damaged. But I think she still tries to believe this is more physical than mental.


    I don't have the answer, but I vow to keep looking for the right doctor, supplement, something. I have been tossed from so many ER's and had doctors actually lose their tempers with me....but like you, I'm sorry, we "are" in that much pain.

    Don't believe me, cuss me out, throw me out, I'm fighting for my life here and my sanity either has to be believed or it isn't. I can't worry that many think I'm nuts.

    But, I must keep going day to day. We have a monthly support group here. I went once and every time after my first visit when they met I was obligated but I really need to go to this again.

    I am the only guy by the way. 55. I sure wish you had a group and maybe you could make some friends from this group and they could be there for you with telephone calls and maybe even visits or activities together. I wish you this.
  6. Didoe

    Didoe New Member

    ever watch a dog spinning around to bite its own tail, endless circles trying to catch that thing he thinks is chasing him...thats what it feels like, a fruitless exercise going nowhere day in and day out with sleep that doesnt give you rest, days of stress with deliberately nasty people that have excuses for everything but being helpful or human

    its so bad where i am, i notice it more when working with an outside contractors on project--i compelted a job with a company and the customer service was so incredibly different from my colleagues, i sent a letter to the company owner this morning on my company stationary, thanking him for running a company that is responsive, responsible and plain pleasant to their clients, its like for a few minutes thre is a brief door of light or humanity in blackness and u think, OH...this is what life is about...what it could be..i see glimpses of normal lives and people and all of it is outside my place of employment, actually its outside of NYC altogether. i dont blame my kids for hating NY and never wanting to visit or live here again.

    JoeB...hard as it is for a woman to watch a man she loves down for the count, it must be hard for any man who truly cares about his family to be unable do what needs to be done. its a heavy load to carry. i haven't experienced the "love conquers all" thing in my life, so i wont spit that in your direction, but bone level honesty is maybe more important, and harder to come by, to hold things together.

    I built up a cement wall over the last year to keep alot of the garbage from making a direct hit, like a filter, it out the dark but also doesnt let much light in either. I come here and sqwuak anonymously in terrible pain that words dont really convey very well. But all I wanted to say was thank you for stopping by and offering such kind words when I know you need to hear some...yourself. You're lucky you have a shoulder even if it isnt always available to lay your head on, go shave and put some smelly stuff on and dont let her go
    achingbits:)
  7. Engel

    Engel New Member

    I feel the same way hun ... like I am stuck on this merry go round from heck.
  8. Didoe

    Didoe New Member

    Google the 50s cult film, "carnival of souls"
    watch it and you'll all understand
  9. Didoe

    Didoe New Member

    JOeB wants to rally us all...anyone up for a bus trip to DC?
    Shall we take JoeB up on his idea/
    Anyone drive? I didnt think so
    Got passports? they'll be checkin for ID when they unchainnus from the white house gates
    Bring your Depends, porta potties are limited and stink
    ...maybe we should all just go to Philly, have a cheesesteak and bang our heads on the liberty bell

    [This Message was Edited on 03/29/2007]
  10. mossrose101

    mossrose101 New Member

    I just felt compelled to reply to you. I have read some of your other posts before and knew you were an east coaster! The funny, disrespectful and honest way you say things might be misunderstood by some not on this coast but I get it! LOL

    Couple things and you probably already know em but here goes:

    Talk directly to your employer's insurance company about their rules and regs. You know how much incompetence is out there! I know you do, I have read your posts remember. Get it from the horse's mouth not your HR.

    By now your employer should have made the necessary recommendations for your job (nothing you dont know already) but there must be some kind of recourse...ie. contact your HR (maybe they can get this right), or your dr. who made the recommendations, or someone involved with FMLA (your employer's FMLA handler). Just a thought

    You mentioned not letting the dark in but in turn not much light shines in. I can relate. I guess at sometime in my life (early for sure), I had the rosy glasses on. Too much pain, disappointment and disillusionment has changed that. I always go to the dark side now unfortunately. By that I mean I expect the worst and even when the best happens I never get too excited for fear the worst will rear its ugly head again. Maybe its not the best way to live but its a great de-stresser. Now my joy is derived from the little things and I try not to miss them. I must admit I am a much calmer person now.

    Some people would say that is no way to live. Reach for the stars, go for it, expect an answer to everything, expect the best because its the only way you will get it etc. etc. In my mind, there is no best there are only little joys and for me thats enough.

    Maybe what I just explained above isnt what you meant by the light and dark thing and its only how I perceived it to be for me.

    All I can say is keep your humor, its a stress-reliever for sure. Do what you can when you can and look for the little joys because they are there. Good luck to you in all your endeavors to feel well and get some relief.
  11. Didoe

    Didoe New Member

    Dear Ms MR
    I must say you hit the nail deeper into the proverbial coffin with your very precise analysis. I wont get religious on you, but I firmly believe in destiny even tho I whine about pain & suffering. The problem for me is not asking for wealth, fame etc. its a life long search for security and now health. Things we assume are a birthright...I was born 'dark' its not condition from wear and tear, my withdrawal from humans is not only a choice to avoid pain, I cannot fathom or handle any more the level of cruelty we accept and dish out daily.

    I had a docs appointment this morning and stopped at the coffeeshop next to the hospital. A tall older man was cleaning tables, filling the milk containers. He must have seen me sitting alone with coffee and a sticky roll because he came over with a paper plate and napkins and said, you'll want these, that's pretty sticky.
    A stranger cleaning tables with more humanity and sense than all the 'educated' clowns I work with. I kissed his cheek on the way out without saying anything. He just looked at me and understood why I was thanking him. Can you imagine being brought to tears from something so simple as kindness from a stranger?
  12. mossrose101

    mossrose101 New Member

    Only my thoughts here but that small kindness and those like them are the big important things; not the things that society as a whole thinks are the big things, like a career, status, the car you drive, the house you live in, how much money you make. Unfortunately those small kindnesses are few and far between today. Call me a pessimist, but these are only my thoughts.

    The good news is those small joys do exist. One other thing...I wont get religious on ya either but I have learned security, self-worth and peace do not come from people or situations and the sooner I learned this the more content I have become. Again, only my thoughts...dont want to start a debate here. lol

    I am so happy for you that you experienced that small kindness from a stranger. It should make us all more mindful of what we say and what we do to others.

    Read your newest post about the dr. appts and so glad you are finally getting a dr. to take you seriously!
  13. Jordane

    Jordane New Member


    Hun I am so so sorry you are going thru this.Hope and pray that you get some help and relief from all this.

    I support and understand!!!

    Hugs,
    Jordane
  14. meditationlotus

    meditationlotus New Member

    I forgot to mention that you might try posting where you live and if someone in that area knows of a good doctor for FM.

    Hope your spirits are improving.
  15. Didoe

    Didoe New Member

    i found a rhuematologist in nyc that was recommended by this site and she's doing tests. i meet again with her in 2 weeks to discuss results but the results were already viewed by another doc and its reconfirmed i have FM. i have a bone scan scheduled because of intense pain. my pain meds only take the edge off pain, its never leaves and its exhausting. with pain and sleep meds i never sleep more than 1-2 hours.

    i need her to back me on obtaining accomodations at work. i really want to go on disability but i'm not ready for that fight, i'm too sick and tired right now.

    thanks meditationlotus for the kind words...
  16. meditationlotus

    meditationlotus New Member

    We are here to help each other through this difficult experience.

    Love and Peace
  17. Didoe

    Didoe New Member

    Divine providence (!) you responded in a timely manner, I was going to start a new thread and wont now.
    I had to walk out again from office. I went in fully prepared to work and the day startd with yet another was between colleagues. When I try for transparency in every issue, people literally panic. There are colleagues who do not want any light on their scammy productivity and games while I have deadlines and work that has to get done. My director does noting except pat heads and smile twiddling everyone along. I called a meeting and she sat squirming when questioned by VP as to certain issues going on that hadn't been addressed/
    "I guess I havent been as attentive as I should have been"
    I guess I dropped the ball
    I forgot
    I am still learning the culture here (18 months into the job)
    I would expect that if I was as incompetent I would not be employed. She seems to think that by frankly saying she's messed up it excuses her messing up!
    By 2pm I was ready to vomit from the idiocies and my own inability to focus on the writing I had to finish.

    THere are courses on "how to cope" at work, books too, do I need to learn how to cope with this crap? Is adjusting to garbage the way to live? Does this ONLY go on in NYC? Is there a work ethic anywhere anymore?
    I dont work for a cheesy corporation, this is a university.
    I excused myself and said I had a Drs appt.
    If my new docs cant see their way to support me in getting accomodations this will just go on and on with sporadic sick days. I dont know what other choice I have.
  18. pika

    pika New Member

    i feel so badly for you, know some of those feelings personally.

    i wanted to second contacting the insurance company directly. i get much better results calling mine, and often have to PUSH the dr/therapist to send the information needed for THEM to get paid!

    as more is learned about FM/CFS, i wonder if insurance companies might put us on case management and coordinate all the different services needed for our varied needs?

    also, regarding your work accomodations. if your company has not made the accomodations, call the EEOC (state office) and file a complaint. at the state sites, there is probably a list of branch offices...

    you know, from what i've seen of accomodations most FM patients make, they are VERY REASONABLE and cost far less than certain other accomadations (reasonable, too) that some companies have to make for other disabilities!

    reasonable accomodation is your (our) RIGHT and there are agencies out there to enforce employers adherence to the law.

    (ie, this is one burden you CAN get help with!)
  19. kareno

    kareno New Member

    Hello,

    I am new to this site. My doctor actually introduced it to me. I wish I had a way to come to you and just wrap my arms around you and let you know you are not alone.

    I am sure the others here share this feeling with you. I cannot imagine how frustrating it must be. I am genuinely lucky because my best friend also has it. She is the one who suggested I might have it.

    Do not give up....!!!! You are not crazy, mental, or anything like that. If anything you are extra aware because of all that you face. Keep searching for a doctor who will help you. Perhaps there is a university hospital somewhere near you that might have better understanding of your needs. Perhaps you could make them get the book "fibro for dummies" and make them read it because I did it for my family and it did help.

    I am learning all about this day by day. If I can help you in any way, please contact me!!!!! oldroydk@yahoo.com

    I am thinking of you....
    Karen O.
  20. Didoe

    Didoe New Member

    Very sweet of you, but for your own safety, please remove your email address, we're not allowed to post our emails addresses.

    Thanks

    dcnfgrs
    the most healing thing anyone could tell me is that any words I write effected them, writing is my craft and life
    are you inferring I prefer illness to wellness?
    I honestly dont think so...I actually do prefer not being around people right now and these kinds of situations only confirm why.
    I never had the best coping skills, thats why I write:) anyone bothering to read some of the cwap I've lived thru would understand why...altho its not much different from the stuff many people lived thru, just more bizarre.
    I hope you feel better...and its eating out we have to watch out for:-([This Message was Edited on 04/04/2007]
    [This Message was Edited on 04/04/2007]