Desperado Needing Help

Discussion in 'Fibromyalgia Main Forum' started by tinkerbellsmom, Aug 14, 2006.

  1. tinkerbellsmom

    tinkerbellsmom New Member

    Hello to all you fellow sufferers of FMS and CFIDS.

    I am so glad I found this website a few nights ago when I was so depressed and needing support so badly and no where to turn to here at home, from family, and friends have deserted me long ago except the one that suffers as much as I do with this and is unable to talk holding the phone, and can't sit long and neither of us are able to get out much any more.

    I came down with this crap at the age of 35 and now age 52, unable to work any more, had to quit the last few jobs I tried because they caused severe flareups, and aggravated the conditions worse.

    I've been denied disability and SSI in my state, said I haven't worked enough quarters and can't get SSI because my husband's Social security check makes us go over the monthly limit, so therefore I cannot get any Medicaid, can't afford health insurance, can't afford vitamins and supplements, although before my husband got laid off,

    I tried many, many kinds of herbs, vitamins, you name it, some would seem to work for awhile then quit. Now the only thing I can do is go to a student doctor's clinic, get Methadone, Soma, high blood pressure pills, but they will not give me any trigger point shots with steroids like I recieved at the Rheumatologist when I had insurance which did give me relief for a few months at a time so I could at least cook, clean house, pay bills, do some things to bring in a little money selling on ebay, but now with no insurance,

    I can't get the trigger point shots, physical therapy, which helped. I just get so mad I could scream and it's like pulling teeth to get any pain meds at all and the do nothing for the inflammation pain.

    I'm sorry, this is getting way too long, so I will try to cut through to the real beef I have. My son, 25, married almost 3 years, now has a baby almost a year old, his wife does not think I am in pain, or exhaustion, so bad at times I can't even get out of bed, fix anything to eat, etc, She say it is B---crap, I heard her over the phone.

    My son and husband, friends, all saw me go down hill, losing the life I once had, can't go to church, play the paino like I did for 25 years, had to give it up when

    I was 35, now he is believing her, and my own sister, who claims she thinks she has it but yet she can cut her 3 acres of yard, use a heavy gas weedeater, vacuum her house, wash clothes, etc.. and then she says things to me like I should just push myself to do things, etc...

    Now my hateful son's wife won't allow me to babysit with my own grandbaby overnight or all day, but will let her Mom keep him overnight and all weekend, talked to me like I was a dog, called me all kinds of names, and my son will not take up for me, goes along with her and told me if I want to see the grandbaby, that I will have to come to their house, when I tried to explain to them both that I hardly ever am able to get out of the house, ride in the car over rough roads, sit in a regular chair, and if they can drive 100 miles a month one way to take him to see her great grandma just because she is older than me and she's afraid she might not live too much longer, even though she doesn't have anything seriously wrong with her, but just because she does not believe I have this illness, that I am just putting on, trying to use it to make them bring the baby to see me, then punish me by not allowing me to keep the baby overnight or at least spend the day?

    I have cried and cried so much over this. The stress makes me so much worse with pain, inflammation, tight stiff mucsles, and totally exhausted. This happened really bad this past Thanskgiving and Christmas, it was so bad I just did not want to go on living. Then a couple months later, after threatening me that I would have to go to court to be able to even see my grandchild, they finally started bringing him over to stay a few hours, come to find out it was just when they had errands to run and as soon as that was over, bam, I no longer get to see him. Even though it hurts my neck and shoulders and back sooo bad to hold him,

    I know he won't be a baby long, and I love him so much and I also know the older he gets I sure won't be able to pick him up and hold him and then it will be such a short few years until he will start school, and since this is the only one they plan on having, I felt like he was the sunshine in my life.

    Staying at home all the time, in chronic pain, unable to do anything, housework, cooking, not even things I used to enjoy like arts and crafts, it gets so depressing and to not have any people around you that you feet understand or love and accept you or do things for you to show you they love you and care. Many times I wonder, why am I still here God? What purpose can I possibly be here for.

    So, sorry for the long email. Can anyone else out there understand where I am coming from? Any suggestions on how you cope? How do you get to the point you don't give a darn what anyone else cares, says, if they never call or visit you? How do learn to get another life with this crap when it steals all your self-esteem, job skills, finances, etc???

    I've told all of them that these diseases are no respector of persons and believe it or not, it could hit any one of them at any time just like it has all of us and more everyday.

    Thanks for listening!! May God bless you all and help us too all get well and gain our lives back. I look forward to hearing from and gaining helpful info and mostly support and friendship.


    [This Message was Edited on 08/15/2006]
  2. 69mach1

    69mach1 New Member

    invite your daughter in law to the dr's w/you...and another thing that married couples have had to do on this board or thought of is.......legally separate from their then they could get their ssi....

    it stinks but what the heck...

    well i need to take my meds....i have another long day ahead of me..

  3. tinkerbellsmom

    tinkerbellsmom New Member

    and thanks to all who offered suggestions, sorry it was so long and I will try to edit it so it will be in shorter paragraphs. I know what you mean about needing it that way in order to see some times our eyes play tricks on us with this crap.

    Lately my eyes have been giving me fits trying to read on the computer, but I could stay on this website all day if I my eyes and muscles would let me.

    I am so glad to find you all. I am desperate for support. I have tried so many things and hoped and prayed for God to heal me or show me what to do, but nothing has worked.

    About giving my family material to read about it, I have tried and they won't read it, don't want to listen to me try to explain, basically my son and daughter-in-law, especially her, just does not believe me, and there is no way either of them would go to the doctor with me and now the stupid clinics I have to go to with student doctors, they don't even know what it is themselves, I have to try to teach them for two years, then they graduate, leave, and I am put with a new doctor, and usually they are foreigners and can't even speak out language.

    How do ya'll turn off negative feelings or upsetting situations that make you have bad flare-ups for weeks or months, and then the people that cause really don't believe you are worse and sure don't want to take the blame for it, so I don't even go there. But what do some of you do to handle or avoid people and situations that cause you severe flare-ups?

    I just feel like I want to get a tent, go up north where it is colder than down here in the south, and get totally away from these people in my life that act like that could care less if I live or die and whether they hurt me or make me worse or not.

    The church people that were around me when I was well and able to play the piano for them three times a week for 25 years for free, now none of them EVER come to see me or call me and I have had this crap since I was around 35 and now I am 52. Now is when I need people to talk to, they could help me with my housework, maybe bring me a hot cooked meal.

    That is one thing I promised God, that if I ever get well, I want to spend the rest of my life helping others with these two dreadful diseases.

    On the suggestion of getting legally seperated to get SSI? I discussed it with my hubby and he went through the roof, besides, the disability folks said with my education and work experience, that I should be able to find some kind of work that I could do, yeah right, like what??. Everything I tried only made me have flare-ups and made me worse.

    I even tried later to get it again on depression and my doctor agreed and filled out the papers, then I was turned down due to not enough work quarters, and not qualify for SSI due to too much income with my husband older than me on Social security and working part-time at Wal-Mart. He has heart problems, is on so many pills, and now with this Medicare medicine plan you have to pay premiums on, plus co-pays on his expensive meds, he can't afford to quit, we barely get by now.

    I wish there was something I could do at home to make some money at home, but I stay so exhausted and in so much pain and inflammation, and so stressed out, depressed, I can barely get out of bed to get a Coca Cola to drink, eat some crackers with it to take my pain meds and muscle relaxers, then hit the recliner the rest of the day. Some days I don't even turn on my computer I am in such a brain fog I feel spaced out and tired of trying to even think, or in so much pain I can't sit or lay in any position to get any relief. I find myself falling asleep a lot while reading the post on here, lol.

    I don't want this to sound like a pity party, because it's not, or a run down of the hateful daughter-in-law and sometimes my own son talking so disrespectful and really hateful words.

    I have had to really pray and ask God to help me to forgive them, because it hard for us to do it ourselves when we've been hurt so bad and when we love or grandchild and aren't allowed to see them except on her terms, which I am not physically able to do, but she accuses me of using that as an excuse.

    I just would like to know how or what some of you to do to divert your attention from your pain, loss of job or family due to these illnesses, and do any of you work from home, if so, what kind of work do you do, if you don't mind sharing?

    Thanks and God bless you all and have a great evening!

    [This Message was Edited on 08/21/2006]
  4. tinkerbellsmom

    tinkerbellsmom New Member

  5. atiledsner

    atiledsner New Member

    I live in north Alabama. You said south. I wondered if you were close to me.Thanks for shareing on this message board.

    This is the place to find help.Nearly every one here has had some of the same stuff happening in their life.

    God Bless you and don't give up.I'll write more later but it is 12:30 pm here. I have to get up early in the morning.

  6. Jana1

    Jana1 New Member

    Some of what you write I understand. I have 2 sons and 2 daughters in law that love me and do everything they can to make it easy for me to see the grandchildren.

    Then I have another son whose wife just doesn't like me at all. They don't "try" to keep the little girls from us, but as they live two states away, they will not ever bring them to see us.

    My son tells us to come there, but I can't bring myself to go to a home that the wife hasn't agreed for me to come. And as you know, it is hard to travel under the best of circumstances, let alone if you are not wanted when you get there!

    It sure hurts my heart to have my oldest granddaughter and her little sister not even to really know us except thru phone calls, letters, and gifts.

    Thank gosh my other two sons and their wives are so generous with their children! They are what keeps me going at times.

    Does your husband give you good support? I sure count on mine and he has never let me down.

    I am in Wyoming...I hope you fill out your bio so we can know you better.

  7. Susan07

    Susan07 New Member

    I just try to be polite to vermin while God heaps burning coals on their head - LOL!

    You seem to be really hurt by your daughter in laws actions so all you can really do is back off and pray. Let God fix this.

    My daughter thinks if I would exercise more I'd get better, I just get quiet and let her pick another topic for discussion.

    Take care,
  8. tinkerbellsmom

    tinkerbellsmom New Member

    Hey there southern girl,

    Geez, Alabama girl, sorry, I can't remember what your name was you used, but wish we lived closer,to each other, but I live in Mississippi, actually closer to the Tennessee state line where all the crime from the big city of Memphis, TN, runs across the stateline, do their crime, then run back across.
    As a matter of fact, one of two of our city cops here in Olive Branch got shot about a month ago, the rookie cop had his bullet-proof vest on, so he didn't get injured too bad and was released that same day, but the other one did not have on his vest, got shot and paralyzed from the chest down, but they flew him down there to one of the hospitals in Alabama for special therapy to try to help him regain as much as he can as he does hace some feelings come and go from his waist down. That was the first cop to get injured that bad here, and the ctiminals got away and have not been captured yet. It's getting bad every where though. Signs of the ends of the times I believe.

    I will fill out my BIO as soon as I can, sorry, I didn't know.

    I love this group so much, no longer than I've been here, you all have made me feel so welcome and so good, concerned and caring people. Hard to find these days!!! At least if you are stuck at home. But these younger generations just don't seem to have any respect or care, compassion, empathy at all!!

    I wish we had a support group close. We had two that were run by people with FMS, but their conditions got so bad until they gave it up, closed the groups and no one else has started another one. I wanted to try to start one, but there is no was I can commit to having something regularly, my energy and pain won't let me. That is why I can't work. I have VERY few good days, most are bad to severe days.

    About getting another life, sorry, I didn't mean that word, sometimes I can't find the right words to mean what I want to say. What I meant to ask was, what do some of you do to help you handle this disease, to help bring in money to help on bills, for enjoyment?? if there is such a thing, besides just trying to get through the day in pain and exhaustion, and how do some of you get meals together, those sort of things.

    Hope you all have a better less painful day!

    God bless you all and thanks so much for all your love, caring, and friendship, more than words can tell. I look forward to getting on here regularly and reading what you all say.


  9. raslin25

    raslin25 New Member

    I am so sorry to hear that you are going through such a rough time and that you feel so alone, i dont have any wonderful advice other than to speak from your heart to your son, and pray that he hears your cry.

    there are always going to be mean spirited people in this world that thrive on causing others misery, there is not alot you can do about that other than put your armor on and pray for them,

    but right now you have to hand this over to god, because each day is hard enough, without adding this stress to it,
    i am sorry that you feel so alone,

    i felt that way before i found this website, and now it is my outlet, and you will find alot of love and support here.
    you take care of yourself.

    (((((((( HUGS))))))))


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