tutough
01-20-2005, 12:03 PM
I was wondering what all of you are planning on doing when your body has built a tolerance to even the strongest of pain meds and you can't get relief from them any longer?
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bluelakelady
01-20-2005, 05:37 PM
hi tt,
i am already doing it. i discovered a practice i follow when the pain gets bigger than the medicine. i meditate on taking on the suffering of the unfortunates in the world that they may have less suffering. i see my pain as pain felt for someone i will never meet. pain they will not have to feel, because i am experiencing it for them. i picture in my mind a woman in a line that stretches for miles. in her hand is a crude bowl for her portion of rice. she will have to feed her children with it. she will see many of her children die. so i focus on the child the mother prays will not die tonight and i dive into my pain, experience it, and offer it, that the mother may cry less when her child does die. i see people in hospitals with cancer and aids and i meditate on easing their pain.
i take vicodin es for pain. the doctors tell me one day that will not be enough. i am very uncomfortable with that concept so i thought if i could find a peaceful way to swim thru the pain now i would be able to stay on the less frightening pain meds longer. so far it has worked for 3 years. i do not take any more a day now than i did then, actually i take less, now that i think about it. giving my pain a purpose works for me.
peace,
bluelakelady
i am already doing it. i discovered a practice i follow when the pain gets bigger than the medicine. i meditate on taking on the suffering of the unfortunates in the world that they may have less suffering. i see my pain as pain felt for someone i will never meet. pain they will not have to feel, because i am experiencing it for them. i picture in my mind a woman in a line that stretches for miles. in her hand is a crude bowl for her portion of rice. she will have to feed her children with it. she will see many of her children die. so i focus on the child the mother prays will not die tonight and i dive into my pain, experience it, and offer it, that the mother may cry less when her child does die. i see people in hospitals with cancer and aids and i meditate on easing their pain.
i take vicodin es for pain. the doctors tell me one day that will not be enough. i am very uncomfortable with that concept so i thought if i could find a peaceful way to swim thru the pain now i would be able to stay on the less frightening pain meds longer. so far it has worked for 3 years. i do not take any more a day now than i did then, actually i take less, now that i think about it. giving my pain a purpose works for me.
peace,
bluelakelady
DecLady
01-20-2005, 06:13 PM
I have been taking vicoden for 2 years now, and my doctor just brought that up. He said when I need more than the prescribed amount ( currently 4 a day) , then he will send me to a pain clinic. I didn't start the conversation with him about whether or not I would even go to one! I don't know for sure what I will do if I get to that point. I guess I hope as the years pass, either I will improve..or they will find out more and have better solutions for us.
jhbumgarner4
01-20-2005, 07:00 PM
Hello out there....I'm new to the boards, but really relate to this issue. I'm 57, basically in bed 75% of the day. I putter around doing household maintenance only.
First, I'm a strong Believer in Jesus Christ. You'd be surprised at the relationship that can develop when you're on your back!!Ha. This is where I receive understanding day to day on how to maintain.
Second...I have a wonderful husband who set up a treadmill next to my bed. I try to walk a mile everyday. Movement is key.
I try to treat only my pain...not the dependency. When I have a "mild" day I cut back.
The pain is always worse than w/drawl symptoms. I'm going on 15 years now of this stuff and feel like I could write a book. Goodness knows I've read them all! Learn to accept your condition and that it's necessary to treat it. I also have IBS...so when I'm not in bed I'm in the bathroom...doesn't this sound glorious????
Not to toot my horn....but I can help. It would be good to know that I'm helping someone while being here in bed!!
God bless,
Julie
First, I'm a strong Believer in Jesus Christ. You'd be surprised at the relationship that can develop when you're on your back!!Ha. This is where I receive understanding day to day on how to maintain.
Second...I have a wonderful husband who set up a treadmill next to my bed. I try to walk a mile everyday. Movement is key.
I try to treat only my pain...not the dependency. When I have a "mild" day I cut back.
The pain is always worse than w/drawl symptoms. I'm going on 15 years now of this stuff and feel like I could write a book. Goodness knows I've read them all! Learn to accept your condition and that it's necessary to treat it. I also have IBS...so when I'm not in bed I'm in the bathroom...doesn't this sound glorious????
Not to toot my horn....but I can help. It would be good to know that I'm helping someone while being here in bed!!
God bless,
Julie
bluelakelady
01-20-2005, 07:36 PM
most people who know they will live with cronic pain are poor candidates for addiction. we want to be awake and aware in our lives, not numb on drugs. i take between one and three pain pills a day. on rare occasions a fourth. usually after dental work. fortunatly my body will not allow me to take more than three a day easily. if i take four for more than three days i get a nasty little rash. it's like having a built in alarm that lets me know my body has had enough of that.
pain clinics are cool. check them out before you rule them out. there is not one pill on the planet that can come close to the power of the mind.
peace,
bluelakelady
pain clinics are cool. check them out before you rule them out. there is not one pill on the planet that can come close to the power of the mind.
peace,
bluelakelady
tutough
01-21-2005, 09:58 AM
Thanks to all, I now know that I am going to hold off as long as I can on taking pain meds. I am only 42 and want to be able to have the option of taking them later in life.
P.S. Bluelakelady, don't take this personally, but you are a nut-job. :-)
P.S. Bluelakelady, don't take this personally, but you are a nut-job. :-)
tkgoodspirit
01-24-2005, 12:31 AM
After I read this post, my first reaction was: shoot myself, but, I would probably miss and cause myself hideous disfigurement, so, I guess "I don't know" is my answer.
I can just say that most likely something new will come out to fight pain, and I'll try it. I only hope my pain managment doc doesn't retire until after I'm dead! LOL I do plan on asking him how long he will treat me for pain, even after I have back surgery. Will he continue treating me for my FM pain. Although I have been told that back surgery will most likely not be a fix all for me. I've waited too long. Ahhhh, the story of my life! :)
Another thing, the women in my family have all died before the age of 66, my mom lived to the age of 65, so I'll probably die young. :) And hopefully in my next life I'll never become ill enough to rely on pain meds, but for right now, they make my life at least bearable.
Much love,
tk
I can just say that most likely something new will come out to fight pain, and I'll try it. I only hope my pain managment doc doesn't retire until after I'm dead! LOL I do plan on asking him how long he will treat me for pain, even after I have back surgery. Will he continue treating me for my FM pain. Although I have been told that back surgery will most likely not be a fix all for me. I've waited too long. Ahhhh, the story of my life! :)
Another thing, the women in my family have all died before the age of 66, my mom lived to the age of 65, so I'll probably die young. :) And hopefully in my next life I'll never become ill enough to rely on pain meds, but for right now, they make my life at least bearable.
Much love,
tk
bluelakelady
01-24-2005, 12:54 AM
dear tutough,
what does nut job mean? is it a compliment?
peace,
bluelakelady
what does nut job mean? is it a compliment?
peace,
bluelakelady
thisstarr
01-24-2005, 07:43 AM
most people who know they will live with cronic pain are poor candidates for addiction. we want to be awake and aware in our lives, not numb on drugs. i take between one and three pain pills a day. on rare occasions a fourth. usually after dental work. fortunatly my body will not allow me to take more than three a day easily. if i take four for more than three days i get a nasty little rash. it's like having a built in alarm that lets me know my body has had enough of that.
pain clinics are cool. check them out before you rule them out. there is not one pill on the planet that can come close to the power of the mind.
peace,
bluelakelady
Hi, :wave:
It is funny you bring this up because this is my BIGGEST problem and it is unfair and I am not kidding! It really scares me because if I ever really need something life threating done, nothing will work! Pain med's dont affect me like everyone else, I know this cant be normal!
HERE IS MY TRUE & CRAZY STORY:
I can take the stongest med's in the world and I still have not found anything to wk or get rid of my pain completly(sp). I am ammume to everything, & I mean everything, I dont ever feel numb or to I get that werid feeling or sleepy when I take my med's. It is hard living with chronic pain and you have to take med's because if you didnt you would be in unbearable pain that you would want to go crazy! :eek:
I use to be on alot more mg and it was helping my pain much more then now, but my doctor would of had to keep increaseing it & increasing it and because I am on an HMO and it is Kaiser they sucks so one doctor stop me cold trukey and almost killed me.
My doctor now is trying to wean me slowly he wants me off, but I am scared because I am in unbearable pain all the time and without my med's I would not be able to do the little bit I do now. I would not be able to walk and I have enough trouble with that!
Right now I am taking 45mg of morphine in the morning & 45mg at night for pain and 5 mg of valium in the morning and 2.5 in the day & 2.5 at night along with a few other things but it doesnt even faze me. I can fuction, drive, talk, sometimes I cant do those things but that is because of the pain not the med's. The med's are part of my routine day to day I take them on time and sometime I have to take an extra pain pill when I have a bad flare up or pain attack. I have been in two car accidents within the last 5 yrs.
The most recent one was a bad car accident and was in the hospital for months. I have also been in the hospital for stomach problems I was in for 3 months. They had me on 4mg of Ditlot/d-lot-did(sp) I cant find my old bottle to spell it right. Even the pills didnt work, it work a bit better in the IV. In the hospital they usually only give you .04 This stuff is stronger then morphine! It suppose to knock you out like a horse, the most they will normally give is 2mg and I was told 2mg was so strong it made a 250 pound man stop breathing and me 5'1 125 pouunds and they were giving me 4mg and it would stop me from crying but the pain would come back and I wasnt tired at all. It took the edge off and that was every 2-4 hrs they gave it to me, on top of taking 30mg of morphine 3xtime a day and 30mg of Valium 3 times a day! The nurses would be scared and double check with me if 4 mg was right they could not believe it, they look at me like I was a lab rat! I was awake during two of my sugerys, they could not knock me out. I was told they gave me 5xtimes the normal dose and they could not believe I was wake and crying and knew what was going on. I should of OD....Now how scary is this, I dont understand my body!
I had to go to the dentist, 3 weeks ago, well I have TMJ so I have a very limited opening, so they said we have to knock you out, well after 10 pokes later with the needle they try to knock me out and the dentist was in shock I was awake and talking, I was the first ever, what is wrong with me :confused: :eek: So now since I really need to get my teeth fix the only way they can do that is under gerenal asti. and I have to pay for 4 hrs up front and it is $500 an hr, so because my body is ammumed to everything, I have to pay $2,000 to be put out complety and they said they hope that works? This is just so unreal!!!
I dont know how my body got this way, let me tell you it is no fun when you are in unbearable pain and it feels like you took a water pill. I suffer with FMS very bad and so many of the symptoms that go with it, chronic headaches, TMJ, the list go's on & on. I cant remember what a day feels like to be pain free, I am 25 and I feel 95! I dont understand why I cant get out of pain not even for 2 min's, I dont want to be on med's for the rest of my life, but I feel I will be!
Life is really unfair to us!
Is anyone like me, or am I one of a kind? If so I should get an award :jester: ok, stupid joke..lol...
~Here's to pain free days~
HUGS,
STARR :angel:
pain clinics are cool. check them out before you rule them out. there is not one pill on the planet that can come close to the power of the mind.
peace,
bluelakelady
Hi, :wave:
It is funny you bring this up because this is my BIGGEST problem and it is unfair and I am not kidding! It really scares me because if I ever really need something life threating done, nothing will work! Pain med's dont affect me like everyone else, I know this cant be normal!
HERE IS MY TRUE & CRAZY STORY:
I can take the stongest med's in the world and I still have not found anything to wk or get rid of my pain completly(sp). I am ammume to everything, & I mean everything, I dont ever feel numb or to I get that werid feeling or sleepy when I take my med's. It is hard living with chronic pain and you have to take med's because if you didnt you would be in unbearable pain that you would want to go crazy! :eek:
I use to be on alot more mg and it was helping my pain much more then now, but my doctor would of had to keep increaseing it & increasing it and because I am on an HMO and it is Kaiser they sucks so one doctor stop me cold trukey and almost killed me.
My doctor now is trying to wean me slowly he wants me off, but I am scared because I am in unbearable pain all the time and without my med's I would not be able to do the little bit I do now. I would not be able to walk and I have enough trouble with that!
Right now I am taking 45mg of morphine in the morning & 45mg at night for pain and 5 mg of valium in the morning and 2.5 in the day & 2.5 at night along with a few other things but it doesnt even faze me. I can fuction, drive, talk, sometimes I cant do those things but that is because of the pain not the med's. The med's are part of my routine day to day I take them on time and sometime I have to take an extra pain pill when I have a bad flare up or pain attack. I have been in two car accidents within the last 5 yrs.
The most recent one was a bad car accident and was in the hospital for months. I have also been in the hospital for stomach problems I was in for 3 months. They had me on 4mg of Ditlot/d-lot-did(sp) I cant find my old bottle to spell it right. Even the pills didnt work, it work a bit better in the IV. In the hospital they usually only give you .04 This stuff is stronger then morphine! It suppose to knock you out like a horse, the most they will normally give is 2mg and I was told 2mg was so strong it made a 250 pound man stop breathing and me 5'1 125 pouunds and they were giving me 4mg and it would stop me from crying but the pain would come back and I wasnt tired at all. It took the edge off and that was every 2-4 hrs they gave it to me, on top of taking 30mg of morphine 3xtime a day and 30mg of Valium 3 times a day! The nurses would be scared and double check with me if 4 mg was right they could not believe it, they look at me like I was a lab rat! I was awake during two of my sugerys, they could not knock me out. I was told they gave me 5xtimes the normal dose and they could not believe I was wake and crying and knew what was going on. I should of OD....Now how scary is this, I dont understand my body!
I had to go to the dentist, 3 weeks ago, well I have TMJ so I have a very limited opening, so they said we have to knock you out, well after 10 pokes later with the needle they try to knock me out and the dentist was in shock I was awake and talking, I was the first ever, what is wrong with me :confused: :eek: So now since I really need to get my teeth fix the only way they can do that is under gerenal asti. and I have to pay for 4 hrs up front and it is $500 an hr, so because my body is ammumed to everything, I have to pay $2,000 to be put out complety and they said they hope that works? This is just so unreal!!!
I dont know how my body got this way, let me tell you it is no fun when you are in unbearable pain and it feels like you took a water pill. I suffer with FMS very bad and so many of the symptoms that go with it, chronic headaches, TMJ, the list go's on & on. I cant remember what a day feels like to be pain free, I am 25 and I feel 95! I dont understand why I cant get out of pain not even for 2 min's, I dont want to be on med's for the rest of my life, but I feel I will be!
Life is really unfair to us!
Is anyone like me, or am I one of a kind? If so I should get an award :jester: ok, stupid joke..lol...
~Here's to pain free days~
HUGS,
STARR :angel:
tutough
01-24-2005, 10:49 AM
TK I sure hope you are wrong about your predictions on life span. Remember you are only half of your mother, and half of your father. Best of luck with the pain meds.
Bluelakelady, not to worry, I would never say anything bad about you. You are a special person. I just meant that you were kind of wacky in a good way.
Star, I feel very sorry for you. My wife is in the same boat as you are. She has a very high tolerance to pain meds.
Bluelakelady, not to worry, I would never say anything bad about you. You are a special person. I just meant that you were kind of wacky in a good way.
Star, I feel very sorry for you. My wife is in the same boat as you are. She has a very high tolerance to pain meds.
bluelakelady
01-24-2005, 11:35 AM
dear tt,
then it is a compliment! goodie! now i can call my mom and tell her she has a nut job for a daughter. she will get a loud laugh out of that one. of course she may say she already knew that. giggle. there is a saying, "the nut does not fall far from the tree." hmmm, maybe my mom knows more than she is telling?
it's a lovely day here. clear blue skies and not the least bit freezing. i had so much fun yesterday. my daughter and granddaughter came for their sunday dinner. we celebrated my granddaughters 11 birthday. each time i hug her she is taller. am i shrinking?
today i run off to that not so warm pool and swim. thank heavens for the hot tub and the sauna. i get toasty warm in the hot tub, then i dash to the pool, do my laps till i feel the cold winning, then back i dash to the hot tub, then into the shower and a quick dry off in the sauna. i come out feeling like a wet noodle.
i was laying on my bed yesterday feeling the owies of my body and i thought, hey, instead of focusing on the places that hurt, i will focus on the places that do not hurt and see how many there are. well, my nose does not hurt and i found a few other places. by the time i was done with my search i was laughing again.
where does it not hurt for you today?
peace,
bluelakelady aka, nut job, giggle
then it is a compliment! goodie! now i can call my mom and tell her she has a nut job for a daughter. she will get a loud laugh out of that one. of course she may say she already knew that. giggle. there is a saying, "the nut does not fall far from the tree." hmmm, maybe my mom knows more than she is telling?
it's a lovely day here. clear blue skies and not the least bit freezing. i had so much fun yesterday. my daughter and granddaughter came for their sunday dinner. we celebrated my granddaughters 11 birthday. each time i hug her she is taller. am i shrinking?
today i run off to that not so warm pool and swim. thank heavens for the hot tub and the sauna. i get toasty warm in the hot tub, then i dash to the pool, do my laps till i feel the cold winning, then back i dash to the hot tub, then into the shower and a quick dry off in the sauna. i come out feeling like a wet noodle.
i was laying on my bed yesterday feeling the owies of my body and i thought, hey, instead of focusing on the places that hurt, i will focus on the places that do not hurt and see how many there are. well, my nose does not hurt and i found a few other places. by the time i was done with my search i was laughing again.
where does it not hurt for you today?
peace,
bluelakelady aka, nut job, giggle
tutough
01-24-2005, 12:32 PM
dear tt,
then it is a compliment! goodie! now i can call my mom and tell her she has a nut job for a daughter. she will get a loud laugh out of that one. of course she may say she already knew that. giggle. there is a saying, "the nut does not fall far from the tree." hmmm, maybe my mom knows more than she is telling?
it's a lovely day here. clear blue skies and not the least bit freezing. i had so much fun yesterday. my daughter and granddaughter came for their sunday dinner. we celebrated my granddaughters 11 birthday. each time i hug her she is taller. am i shrinking?
today i run off to that not so warm pool and swim. thank heavens for the hot tub and the sauna. i get toasty warm in the hot tub, then i dash to the pool, do my laps till i feel the cold winning, then back i dash to the hot tub, then into the shower and a quick dry off in the sauna. i come out feeling like a wet noodle.
i was laying on my bed yesterday feeling the owies of my body and i thought, hey, instead of focusing on the places that hurt, i will focus on the places that do not hurt and see how many there are. well, my nose does not hurt and i found a few other places. by the time i was done with my search i was laughing again.
where does it not hurt for you today?
peace,
bluelakelady aka, nut job, giggle
Hi, you are truly a ray of sunshine. I wish my body felt as good as your mind set.
then it is a compliment! goodie! now i can call my mom and tell her she has a nut job for a daughter. she will get a loud laugh out of that one. of course she may say she already knew that. giggle. there is a saying, "the nut does not fall far from the tree." hmmm, maybe my mom knows more than she is telling?
it's a lovely day here. clear blue skies and not the least bit freezing. i had so much fun yesterday. my daughter and granddaughter came for their sunday dinner. we celebrated my granddaughters 11 birthday. each time i hug her she is taller. am i shrinking?
today i run off to that not so warm pool and swim. thank heavens for the hot tub and the sauna. i get toasty warm in the hot tub, then i dash to the pool, do my laps till i feel the cold winning, then back i dash to the hot tub, then into the shower and a quick dry off in the sauna. i come out feeling like a wet noodle.
i was laying on my bed yesterday feeling the owies of my body and i thought, hey, instead of focusing on the places that hurt, i will focus on the places that do not hurt and see how many there are. well, my nose does not hurt and i found a few other places. by the time i was done with my search i was laughing again.
where does it not hurt for you today?
peace,
bluelakelady aka, nut job, giggle
Hi, you are truly a ray of sunshine. I wish my body felt as good as your mind set.
bluelakelady
01-24-2005, 04:13 PM
attitude, imagination, and determination. if my body felt as wonderful as my mind does i would never have come here. silver lining, meeting all of you.
there is a secret garden inside all of us. i have cultivated mine. it is the place we ran to as children when something scared us. it evolves as we do. when an injury to your body happens you can go there. i spend most of my time in my garden making sure the compassion flowers and the tolerance grasses are flourishing. i water my patience knowing i can never have too much of those helpful blossoms. i have a special ground cover for my bare feet to practice stepping lightly on. it shimmers in shades of purple and green. this ground cover i call love.
we were all gifted with imagination. my mom says mine has always been creative. i believe her. i take my garden out into the world with me. from that space i connect with others. the pain is there. the constant concentration of all my energies on that pain is not. those are the moments when my garden sustains me. the sunshine in my garden comes to soften my journey. there are no boundaries or fences in my garden. only opens space to fill with my favorite friends.
i am off to rest now. i swam about 2 miles today. it took me just over an hour. my body is vibrating. it is that very sweet vibration of muscles and tendons and ligaments singing in harmony. i love to float.
may your garden flourish, your body find the path within, and your mind be filled with fertile soil.
peace,
bluelakelady
there is a secret garden inside all of us. i have cultivated mine. it is the place we ran to as children when something scared us. it evolves as we do. when an injury to your body happens you can go there. i spend most of my time in my garden making sure the compassion flowers and the tolerance grasses are flourishing. i water my patience knowing i can never have too much of those helpful blossoms. i have a special ground cover for my bare feet to practice stepping lightly on. it shimmers in shades of purple and green. this ground cover i call love.
we were all gifted with imagination. my mom says mine has always been creative. i believe her. i take my garden out into the world with me. from that space i connect with others. the pain is there. the constant concentration of all my energies on that pain is not. those are the moments when my garden sustains me. the sunshine in my garden comes to soften my journey. there are no boundaries or fences in my garden. only opens space to fill with my favorite friends.
i am off to rest now. i swam about 2 miles today. it took me just over an hour. my body is vibrating. it is that very sweet vibration of muscles and tendons and ligaments singing in harmony. i love to float.
may your garden flourish, your body find the path within, and your mind be filled with fertile soil.
peace,
bluelakelady
twisten
01-24-2005, 05:08 PM
I usually post in the pain management board but I had to comment on this post. Bluelakelady that is, without a doubt, the most beautiful thing I have ever read. I even imagined myself in that garden while reading about it!! I bet you bring alot of joy and peace to those who love you as well as every one on this board. Keep it coming!!
bluelakelady
01-24-2005, 08:19 PM
hi twisten,
thank you. my garden is just that lovely. thank you for coming in for a visit. spreading the harvest of my garden around is what i enjoy most. my life is gifted with many good girlfriends and a few very unique man friends. the medical professionals who assist me are also believers in magic and fun. my shrink calls me his secret treasure.
i think i will pop into the pain mgmt site and see who is there.
peace
bluelakelady
thank you. my garden is just that lovely. thank you for coming in for a visit. spreading the harvest of my garden around is what i enjoy most. my life is gifted with many good girlfriends and a few very unique man friends. the medical professionals who assist me are also believers in magic and fun. my shrink calls me his secret treasure.
i think i will pop into the pain mgmt site and see who is there.
peace
bluelakelady
thisstarr
01-25-2005, 01:17 AM
TK I sure hope you are wrong about your predictions on life span. Remember you are only half of your mother, and half of your father. Best of luck with the pain meds.
Bluelakelady, not to worry, I would never say anything bad about you. You are a special person. I just meant that you were kind of wacky in a good way.
Starr, I feel very sorry for you. My wife is in the same boat as you are. She has a very high tolerance to pain meds.
Hi there, :wave:
I just dont get it? How can someone be so Tolerance to med's. I just wish I could find something that would help. I feel I sufffer more then others because med's work for them and not me!:( Has your wife always been like this? Is there anything that helps her?
Thanks for caring,
Hugs,
STARR :angel:
~Here's to pain free days~
Bluelakelady, not to worry, I would never say anything bad about you. You are a special person. I just meant that you were kind of wacky in a good way.
Starr, I feel very sorry for you. My wife is in the same boat as you are. She has a very high tolerance to pain meds.
Hi there, :wave:
I just dont get it? How can someone be so Tolerance to med's. I just wish I could find something that would help. I feel I sufffer more then others because med's work for them and not me!:( Has your wife always been like this? Is there anything that helps her?
Thanks for caring,
Hugs,
STARR :angel:
~Here's to pain free days~
thisstarr
01-25-2005, 01:38 AM
Quote:
Originally Posted by jhbumgarner4
Hello out there....I'm new to the boards, but really relate to this issue. I'm 57, basically in bed 75% of the day. I putter around doing household maintenance only.
First, I'm a strong Believer in Jesus Christ. You'd be surprised at the relationship that can develop when you're on your back!!Ha. This is where I receive understanding day to day on how to maintain.
Second...I have a wonderful husband who set up a treadmill next to my bed. I try to walk a mile everyday. Movement is key.
I try to treat only my pain...not the dependency. When I have a "mild" day I cut back.The pain is always worse than w/drawl symptoms. I'm going on 15 years now of this stuff and feel like I could write a book. Goodness knows I've read them all! Learn to accept your condition and that it's necessary to treat it. I also have IBS...so when I'm not in bed I'm in the bathroom...doesn't this sound glorious????Not to toot my horn....but I can help. It would be good to know that I'm helping someone while being here in bed!!
God bless,
Julie
Hi There Jule, :wave:
I was reading your poast and I just had to reply to you. How do you learn to accept your condition because I cant! :confused: Some days I think I have and others I feel I am going to lose it, the pain is just to unbearable, I dont know if it is because of my age I just turned 25 but feel 95! I have a husband who trys to understand but only kind of gets it. He knows I have pain and I hurt, but he doesnt know how bad. Sometimes I think he understands and then there or days I feel I wish he got it better to help me cope! I had so many things going for me before I got Ill. I was modeling, I loved to dance & roller skate and loved to work and be with my friends & family. I started to have problems in 2000 when I got in a car accident, I got hurt and then went to the chrio and saw doc's and got better but had pain from time to time. Then these headaches that were unbearable came on and my TMJ gotten much worse. My husband & I got together at the time my Illenss really started to bother me. We have know eachtoher since we were 6 yrs. we were best friends in high school, I never though he would be the one I would marry but I am happy I did. I think he trys his best but I just feel lost at time and feel I need more from him. I dont have any friends anymore because they said I turned into a flake someone that would never let anyone down doesnt want to do this or that, she changed and is selfish, I had one friend say it is my med's that are killing me and I am not really Ill at all, FMS is an excuse to be on med's, that really hurt! I could not believe it! :nono:
I just dont know how I can live life like this in the hell I experence every min of everyday! My pain is to much! Each day that pass I wonder how much longer, am I going to ever get better?
Thanks,
HUGS,
STARR :angel:
~Here's to pain free days~
Originally Posted by jhbumgarner4
Hello out there....I'm new to the boards, but really relate to this issue. I'm 57, basically in bed 75% of the day. I putter around doing household maintenance only.
First, I'm a strong Believer in Jesus Christ. You'd be surprised at the relationship that can develop when you're on your back!!Ha. This is where I receive understanding day to day on how to maintain.
Second...I have a wonderful husband who set up a treadmill next to my bed. I try to walk a mile everyday. Movement is key.
I try to treat only my pain...not the dependency. When I have a "mild" day I cut back.The pain is always worse than w/drawl symptoms. I'm going on 15 years now of this stuff and feel like I could write a book. Goodness knows I've read them all! Learn to accept your condition and that it's necessary to treat it. I also have IBS...so when I'm not in bed I'm in the bathroom...doesn't this sound glorious????Not to toot my horn....but I can help. It would be good to know that I'm helping someone while being here in bed!!
God bless,
Julie
Hi There Jule, :wave:
I was reading your poast and I just had to reply to you. How do you learn to accept your condition because I cant! :confused: Some days I think I have and others I feel I am going to lose it, the pain is just to unbearable, I dont know if it is because of my age I just turned 25 but feel 95! I have a husband who trys to understand but only kind of gets it. He knows I have pain and I hurt, but he doesnt know how bad. Sometimes I think he understands and then there or days I feel I wish he got it better to help me cope! I had so many things going for me before I got Ill. I was modeling, I loved to dance & roller skate and loved to work and be with my friends & family. I started to have problems in 2000 when I got in a car accident, I got hurt and then went to the chrio and saw doc's and got better but had pain from time to time. Then these headaches that were unbearable came on and my TMJ gotten much worse. My husband & I got together at the time my Illenss really started to bother me. We have know eachtoher since we were 6 yrs. we were best friends in high school, I never though he would be the one I would marry but I am happy I did. I think he trys his best but I just feel lost at time and feel I need more from him. I dont have any friends anymore because they said I turned into a flake someone that would never let anyone down doesnt want to do this or that, she changed and is selfish, I had one friend say it is my med's that are killing me and I am not really Ill at all, FMS is an excuse to be on med's, that really hurt! I could not believe it! :nono:
I just dont know how I can live life like this in the hell I experence every min of everyday! My pain is to much! Each day that pass I wonder how much longer, am I going to ever get better?
Thanks,
HUGS,
STARR :angel:
~Here's to pain free days~
tutough
01-25-2005, 09:44 AM
Quote:
Originally Posted by jhbumgarner4
Hello out there....I'm new to the boards, but really relate to this issue. I'm 57, basically in bed 75% of the day. I putter around doing household maintenance only.
First, I'm a strong Believer in Jesus Christ. You'd be surprised at the relationship that can develop when you're on your back!!Ha. This is where I receive understanding day to day on how to maintain.
Second...I have a wonderful husband who set up a treadmill next to my bed. I try to walk a mile everyday. Movement is key.
I try to treat only my pain...not the dependency. When I have a "mild" day I cut back.The pain is always worse than w/drawl symptoms. I'm going on 15 years now of this stuff and feel like I could write a book. Goodness knows I've read them all! Learn to accept your condition and that it's necessary to treat it. I also have IBS...so when I'm not in bed I'm in the bathroom...doesn't this sound glorious????Not to toot my horn....but I can help. It would be good to know that I'm helping someone while being here in bed!!
God bless,
Julie
Hi There Jule, :wave:
I was reading your poast and I just had to reply to you. How do you learn to accept your condition because I cant! :confused: Some days I think I have and others I feel I am going to lose it, the pain is just to unbearable, I dont know if it is because of my age I just turned 25 but feel 95! I have a husband who trys to understand but only kind of gets it. He knows I have pain and I hurt, but he doesnt know how bad. Sometimes I think he understands and then there or days I feel I wish he got it better to help me cope! I had so many things going for me before I got Ill. I was modeling, I loved to dance & roller skate and loved to work and be with my friends & family. I started to have problems in 2000 when I got in a car accident, I got hurt and then went to the chrio and saw doc's and got better but had pain from time to time. Then these headaches that were unbearable came on and my TMJ gotten much worse. My husband & I got together at the time my Illenss really started to bother me. We have know eachtoher since we were 6 yrs. we were best friends in high school, I never though he would be the one I would marry but I am happy I did. I think he trys his best but I just feel lost at time and feel I need more from him. I dont have any friends anymore because they said I turned into a flake someone that would never let anyone down doesnt want to do this or that, she changed and is selfish, I had one friend say it is my med's that are killing me and I am not really Ill at all, FMS is an excuse to be on med's, that really hurt! I could not believe it! :nono:
I just dont know how I can live life like this in the hell I experence every min of everyday! My pain is to much! Each day that pass I wonder how much longer, am I going to ever get better?
Thanks,
HUGS,
STARR :angel:
~Here's to pain free days~
Dear Star,
That has to be the best plea for help I ave ever read or heard. But now I have to be tough and down right mean I guess. What you tell is what all of us go through each and every day. Let me tell you what I do for exorcise and peace of mind. I used to play golf every day when I was healthy, and I was damn good at it. Then this hell came for me, and took all of it away. I succombed to it and let it take over. I didn't play golf for three years. I hate to take pain meds, because I don't like how they make me feel, but there are times that I will be in such bad shape my wife makes me take a percocet. She pushes two of them at me, but I only take one.
After three years of letting this illness take over I finally said enough is enough. I picked my golf clubs up again, and headed for the golf course pain med free. There is no such thing as a golf cart for me, I am better and stronger than that. It would be like taking the easy way out, and I couldn't do that. I knew I had my limits though. I walked 9 holes instead of what I used to walk. I start out ok sometimes, and then others I can barely move when I go to play. Even on the days I start out ok, by the second or third hole I am always hurting so bad, that for a fleating moment I wish it it would end. But I don't give up, and neither should you! I finish the round and know that I will hurt for days, but that doesn't matter. I am happy for the first time in three years and can't wait to go at it again.
Be strong star, I know you hurt so bad. Don't let this take over your life please!
Originally Posted by jhbumgarner4
Hello out there....I'm new to the boards, but really relate to this issue. I'm 57, basically in bed 75% of the day. I putter around doing household maintenance only.
First, I'm a strong Believer in Jesus Christ. You'd be surprised at the relationship that can develop when you're on your back!!Ha. This is where I receive understanding day to day on how to maintain.
Second...I have a wonderful husband who set up a treadmill next to my bed. I try to walk a mile everyday. Movement is key.
I try to treat only my pain...not the dependency. When I have a "mild" day I cut back.The pain is always worse than w/drawl symptoms. I'm going on 15 years now of this stuff and feel like I could write a book. Goodness knows I've read them all! Learn to accept your condition and that it's necessary to treat it. I also have IBS...so when I'm not in bed I'm in the bathroom...doesn't this sound glorious????Not to toot my horn....but I can help. It would be good to know that I'm helping someone while being here in bed!!
God bless,
Julie
Hi There Jule, :wave:
I was reading your poast and I just had to reply to you. How do you learn to accept your condition because I cant! :confused: Some days I think I have and others I feel I am going to lose it, the pain is just to unbearable, I dont know if it is because of my age I just turned 25 but feel 95! I have a husband who trys to understand but only kind of gets it. He knows I have pain and I hurt, but he doesnt know how bad. Sometimes I think he understands and then there or days I feel I wish he got it better to help me cope! I had so many things going for me before I got Ill. I was modeling, I loved to dance & roller skate and loved to work and be with my friends & family. I started to have problems in 2000 when I got in a car accident, I got hurt and then went to the chrio and saw doc's and got better but had pain from time to time. Then these headaches that were unbearable came on and my TMJ gotten much worse. My husband & I got together at the time my Illenss really started to bother me. We have know eachtoher since we were 6 yrs. we were best friends in high school, I never though he would be the one I would marry but I am happy I did. I think he trys his best but I just feel lost at time and feel I need more from him. I dont have any friends anymore because they said I turned into a flake someone that would never let anyone down doesnt want to do this or that, she changed and is selfish, I had one friend say it is my med's that are killing me and I am not really Ill at all, FMS is an excuse to be on med's, that really hurt! I could not believe it! :nono:
I just dont know how I can live life like this in the hell I experence every min of everyday! My pain is to much! Each day that pass I wonder how much longer, am I going to ever get better?
Thanks,
HUGS,
STARR :angel:
~Here's to pain free days~
Dear Star,
That has to be the best plea for help I ave ever read or heard. But now I have to be tough and down right mean I guess. What you tell is what all of us go through each and every day. Let me tell you what I do for exorcise and peace of mind. I used to play golf every day when I was healthy, and I was damn good at it. Then this hell came for me, and took all of it away. I succombed to it and let it take over. I didn't play golf for three years. I hate to take pain meds, because I don't like how they make me feel, but there are times that I will be in such bad shape my wife makes me take a percocet. She pushes two of them at me, but I only take one.
After three years of letting this illness take over I finally said enough is enough. I picked my golf clubs up again, and headed for the golf course pain med free. There is no such thing as a golf cart for me, I am better and stronger than that. It would be like taking the easy way out, and I couldn't do that. I knew I had my limits though. I walked 9 holes instead of what I used to walk. I start out ok sometimes, and then others I can barely move when I go to play. Even on the days I start out ok, by the second or third hole I am always hurting so bad, that for a fleating moment I wish it it would end. But I don't give up, and neither should you! I finish the round and know that I will hurt for days, but that doesn't matter. I am happy for the first time in three years and can't wait to go at it again.
Be strong star, I know you hurt so bad. Don't let this take over your life please!
JustMeBeingMe
01-25-2005, 11:35 AM
Hello Starr
Did you ever find out from your doctor about the patch?
Becky
Did you ever find out from your doctor about the patch?
Becky
KlibanLady
01-26-2005, 11:29 PM
Hi, :wave:
It is funny you bring this up because this is my BIGGEST problem and it is unfair and I am not kidding! It really scares me because if I ever really need something life threating done, nothing will work! Pain med's dont affect me like everyone else, I know this cant be normal!
HERE IS MY TRUE & CRAZY STORY:
I can take the stongest med's in the world and I still have not found anything to wk or get rid of my pain completly(sp). I am ammume to everything, & I mean everything, I dont ever feel numb or to I get that werid feeling or sleepy when I take my med's. It is hard living with chronic pain and you have to take med's because if you didnt you would be in unbearable pain that you would want to go crazy! :eek:
I use to be on alot more mg and it was helping my pain much more then now, but my doctor would of had to keep increaseing it & increasing it and because I am on an HMO and it is Kaiser they sucks so one doctor stop me cold trukey and almost killed me.
My doctor now is trying to wean me slowly he wants me off, but I am scared because I am in unbearable pain all the time and without my med's I would not be able to do the little bit I do now. I would not be able to walk and I have enough trouble with that!
Right now I am taking 45mg of morphine in the morning & 45mg at night for pain and 5 mg of valium in the morning and 2.5 in the day & 2.5 at night along with a few other things but it doesnt even faze me. I can fuction, drive, talk, sometimes I cant do those things but that is because of the pain not the med's. The med's are part of my routine day to day I take them on time and sometime I have to take an extra pain pill when I have a bad flare up or pain attack. I have been in two car accidents within the last 5 yrs.
The most recent one was a bad car accident and was in the hospital for months. I have also been in the hospital for stomach problems I was in for 3 months. They had me on 4mg of Ditlot/d-lot-did(sp) I cant find my old bottle to spell it right. Even the pills didnt work, it work a bit better in the IV. In the hospital they usually only give you .04 This stuff is stronger then morphine! It suppose to knock you out like a horse, the most they will normally give is 2mg and I was told 2mg was so strong it made a 250 pound man stop breathing and me 5'1 125 pouunds and they were giving me 4mg and it would stop me from crying but the pain would come back and I wasnt tired at all. It took the edge off and that was every 2-4 hrs they gave it to me, on top of taking 30mg of morphine 3xtime a day and 30mg of Valium 3 times a day! The nurses would be scared and double check with me if 4 mg was right they could not believe it, they look at me like I was a lab rat! I was awake during two of my sugerys, they could not knock me out. I was told they gave me 5xtimes the normal dose and they could not believe I was wake and crying and knew what was going on. I should of OD....Now how scary is this, I dont understand my body!
I had to go to the dentist, 3 weeks ago, well I have TMJ so I have a very limited opening, so they said we have to knock you out, well after 10 pokes later with the needle they try to knock me out and the dentist was in shock I was awake and talking, I was the first ever, what is wrong with me :confused: :eek: So now since I really need to get my teeth fix the only way they can do that is under gerenal asti. and I have to pay for 4 hrs up front and it is $500 an hr, so because my body is ammumed to everything, I have to pay $2,000 to be put out complety and they said they hope that works? This is just so unreal!!!
I dont know how my body got this way, let me tell you it is no fun when you are in unbearable pain and it feels like you took a water pill. I suffer with FMS very bad and so many of the symptoms that go with it, chronic headaches, TMJ, the list go's on & on. I cant remember what a day feels like to be pain free, I am 25 and I feel 95! I dont understand why I cant get out of pain not even for 2 min's, I dont want to be on med's for the rest of my life, but I feel I will be!
Life is really unfair to us!
Is anyone like me, or am I one of a kind? If so I should get an award :jester: ok, stupid joke..lol...
~Here's to pain free days~
HUGS,
STARR :angel:
Go to an infectious disease doctor and get a referral to a pain clinic. Your pain is much too severe to keep masking what is really wrong. That is one of the worst cases of Fibromyalgia I have heard of. Quit ignoring the problem and get some labwork done at a different doctor and find out what is causing your severe pain.
It is funny you bring this up because this is my BIGGEST problem and it is unfair and I am not kidding! It really scares me because if I ever really need something life threating done, nothing will work! Pain med's dont affect me like everyone else, I know this cant be normal!
HERE IS MY TRUE & CRAZY STORY:
I can take the stongest med's in the world and I still have not found anything to wk or get rid of my pain completly(sp). I am ammume to everything, & I mean everything, I dont ever feel numb or to I get that werid feeling or sleepy when I take my med's. It is hard living with chronic pain and you have to take med's because if you didnt you would be in unbearable pain that you would want to go crazy! :eek:
I use to be on alot more mg and it was helping my pain much more then now, but my doctor would of had to keep increaseing it & increasing it and because I am on an HMO and it is Kaiser they sucks so one doctor stop me cold trukey and almost killed me.
My doctor now is trying to wean me slowly he wants me off, but I am scared because I am in unbearable pain all the time and without my med's I would not be able to do the little bit I do now. I would not be able to walk and I have enough trouble with that!
Right now I am taking 45mg of morphine in the morning & 45mg at night for pain and 5 mg of valium in the morning and 2.5 in the day & 2.5 at night along with a few other things but it doesnt even faze me. I can fuction, drive, talk, sometimes I cant do those things but that is because of the pain not the med's. The med's are part of my routine day to day I take them on time and sometime I have to take an extra pain pill when I have a bad flare up or pain attack. I have been in two car accidents within the last 5 yrs.
The most recent one was a bad car accident and was in the hospital for months. I have also been in the hospital for stomach problems I was in for 3 months. They had me on 4mg of Ditlot/d-lot-did(sp) I cant find my old bottle to spell it right. Even the pills didnt work, it work a bit better in the IV. In the hospital they usually only give you .04 This stuff is stronger then morphine! It suppose to knock you out like a horse, the most they will normally give is 2mg and I was told 2mg was so strong it made a 250 pound man stop breathing and me 5'1 125 pouunds and they were giving me 4mg and it would stop me from crying but the pain would come back and I wasnt tired at all. It took the edge off and that was every 2-4 hrs they gave it to me, on top of taking 30mg of morphine 3xtime a day and 30mg of Valium 3 times a day! The nurses would be scared and double check with me if 4 mg was right they could not believe it, they look at me like I was a lab rat! I was awake during two of my sugerys, they could not knock me out. I was told they gave me 5xtimes the normal dose and they could not believe I was wake and crying and knew what was going on. I should of OD....Now how scary is this, I dont understand my body!
I had to go to the dentist, 3 weeks ago, well I have TMJ so I have a very limited opening, so they said we have to knock you out, well after 10 pokes later with the needle they try to knock me out and the dentist was in shock I was awake and talking, I was the first ever, what is wrong with me :confused: :eek: So now since I really need to get my teeth fix the only way they can do that is under gerenal asti. and I have to pay for 4 hrs up front and it is $500 an hr, so because my body is ammumed to everything, I have to pay $2,000 to be put out complety and they said they hope that works? This is just so unreal!!!
I dont know how my body got this way, let me tell you it is no fun when you are in unbearable pain and it feels like you took a water pill. I suffer with FMS very bad and so many of the symptoms that go with it, chronic headaches, TMJ, the list go's on & on. I cant remember what a day feels like to be pain free, I am 25 and I feel 95! I dont understand why I cant get out of pain not even for 2 min's, I dont want to be on med's for the rest of my life, but I feel I will be!
Life is really unfair to us!
Is anyone like me, or am I one of a kind? If so I should get an award :jester: ok, stupid joke..lol...
~Here's to pain free days~
HUGS,
STARR :angel:
Go to an infectious disease doctor and get a referral to a pain clinic. Your pain is much too severe to keep masking what is really wrong. That is one of the worst cases of Fibromyalgia I have heard of. Quit ignoring the problem and get some labwork done at a different doctor and find out what is causing your severe pain.
thisstarr
01-28-2005, 12:12 PM
Go to an infectious disease doctor and get a referral to a pain clinic. Your pain is much too severe to keep masking what is really wrong. That is one of the worst cases of Fibromyalgia I have heard of. Quit ignoring the problem and get some labwork done at a different doctor and find out what is causing your severe pain.
Hi There, :wave:
Thank you for your input! I have an HMO called Kaiser and I can only see there doctors. I will ask my primary doctor when I see him in two weeks if Kaiser has that type of doctor. What can they do for me and why do I have to see that type of doctor? I have been told I have one of the worse FM most doctors have seen but why? I dont understand I am 25, I should not be in this pain!
Thanks so much,
~Here's to pain free days~
HUGS,
STARR :angel:
Hi There, :wave:
Thank you for your input! I have an HMO called Kaiser and I can only see there doctors. I will ask my primary doctor when I see him in two weeks if Kaiser has that type of doctor. What can they do for me and why do I have to see that type of doctor? I have been told I have one of the worse FM most doctors have seen but why? I dont understand I am 25, I should not be in this pain!
Thanks so much,
~Here's to pain free days~
HUGS,
STARR :angel:
fibrolady
01-29-2005, 09:39 PM
Starr: you need to be on stronger meds, period. Combined with stress therapy, ie. massage or light chiropractic. Personally, I take a total of 300 mg. of morphine per day, along with 40 mg. Paxil and a sleep-aid. I function "normally" on this dosage. I have had to increase the morphine dosage twice since starting on it 3 years ago. The morphine replaced Methadone.
If opiates don't work for you, try analgesics (sp?) - there are hundreds of different pain medications. I belong to a Pain Management facility, and, yes, it took 3 months to get it, but well worth the wait. In the interim, my GP took care of my pain meds.
Speak up! And keep speaking up until a doctor hears you and takes better care of your problem. Remember, most doctors are not educated about FMS so you need to educate them. Good luck kiddo
If opiates don't work for you, try analgesics (sp?) - there are hundreds of different pain medications. I belong to a Pain Management facility, and, yes, it took 3 months to get it, but well worth the wait. In the interim, my GP took care of my pain meds.
Speak up! And keep speaking up until a doctor hears you and takes better care of your problem. Remember, most doctors are not educated about FMS so you need to educate them. Good luck kiddo
thisstarr
01-30-2005, 12:44 AM
Starr: you need to be on stronger meds, period. Combined with stress therapy, ie. massage or light chiropractic. Personally, I take a total of 300 mg. of morphine per day, along with 40 mg. Paxil and a sleep-aid. I function "normally" on this dosage. I have had to increase the morphine dosage twice since starting on it 3 years ago. The morphine replaced Methadone.
If opiates don't work for you, try analgesics (sp?) - there are hundreds of different pain medications. I belong to a Pain Management facility, and, yes, it took 3 months to get it, but well worth the wait. In the interim, my GP took care of my pain meds.
Speak up! And keep speaking up until a doctor hears you and takes better care of your problem. Remember, most doctors are not educated about FMS so you need to educate them. Good luck kiddo
Hi There, :wave:
I know I need to be on stronger pain med's but I cant find ANY doctor that will put me on more, they are FREAKING OUT over 45mg 2x a day and that is nothing. I cant deal with the pain, I have the worst insurance ever and they are trying there best to get me OFF the med's but I dont think that can happen, I cant be in pain any worse then what I feel now, I will go crazy!! :eek: :eek: :eek: My doctors said I HAVE to get off the morphine & the Valium but if I do the pain will be unbearable, I dont know how to make him get it!!! I am in unbearable pain now but I cant take it, and if I was off or if he reduces it anymore I wont be able to walk! I can barly now!
Kasier doesnt have pain mangement, I live in upland California where are you? Have you heard of Kaiser Permatmente?(sp) I need to do something but I dont know what, I cant live with these pains much longer it is getting to be to much. I feel 90 and I feel like something is eating my fleash the pain is so deep and painful!! Today my husband said why are you hurting you slepted and that hurt my feelings so bad becasue I thought he understood a bit better but he is clueless!
THANK YOU SO MUCH FOR YOUR INPUT it means so much!!!!
HUGS,
STARR :angel:
~Heres to pain free days~
If opiates don't work for you, try analgesics (sp?) - there are hundreds of different pain medications. I belong to a Pain Management facility, and, yes, it took 3 months to get it, but well worth the wait. In the interim, my GP took care of my pain meds.
Speak up! And keep speaking up until a doctor hears you and takes better care of your problem. Remember, most doctors are not educated about FMS so you need to educate them. Good luck kiddo
Hi There, :wave:
I know I need to be on stronger pain med's but I cant find ANY doctor that will put me on more, they are FREAKING OUT over 45mg 2x a day and that is nothing. I cant deal with the pain, I have the worst insurance ever and they are trying there best to get me OFF the med's but I dont think that can happen, I cant be in pain any worse then what I feel now, I will go crazy!! :eek: :eek: :eek: My doctors said I HAVE to get off the morphine & the Valium but if I do the pain will be unbearable, I dont know how to make him get it!!! I am in unbearable pain now but I cant take it, and if I was off or if he reduces it anymore I wont be able to walk! I can barly now!
Kasier doesnt have pain mangement, I live in upland California where are you? Have you heard of Kaiser Permatmente?(sp) I need to do something but I dont know what, I cant live with these pains much longer it is getting to be to much. I feel 90 and I feel like something is eating my fleash the pain is so deep and painful!! Today my husband said why are you hurting you slepted and that hurt my feelings so bad becasue I thought he understood a bit better but he is clueless!
THANK YOU SO MUCH FOR YOUR INPUT it means so much!!!!
HUGS,
STARR :angel:
~Heres to pain free days~
thisstarr
01-30-2005, 12:47 AM
Hello Starr
Did you ever find out from your doctor about the patch?
Becky
Hi, :wave:
Thanks for caring :) What was the name of it again? I go see him Feb 7th? I forgot what you said?
Thanks sweetie,
HUGS,
STARR :angel:
~HERE'S TO PAIN FREE DAYS~
Did you ever find out from your doctor about the patch?
Becky
Hi, :wave:
Thanks for caring :) What was the name of it again? I go see him Feb 7th? I forgot what you said?
Thanks sweetie,
HUGS,
STARR :angel:
~HERE'S TO PAIN FREE DAYS~
tkgoodspirit
01-30-2005, 01:25 AM
Hi, :wave:
Thanks for caring :) What was the name of it again? I go see him Feb 7th? I forgot what you said?
Thanks sweetie,
HUGS,
STARR :angel:
~HERE'S TO PAIN FREE DAYS~
star:
JBM may be referring to the Duragesic Patch. Fentynal I gather. Just ask about the patch and I'm sure your doc will know what you are referring to.
Good luck honey,
tk
Thanks for caring :) What was the name of it again? I go see him Feb 7th? I forgot what you said?
Thanks sweetie,
HUGS,
STARR :angel:
~HERE'S TO PAIN FREE DAYS~
star:
JBM may be referring to the Duragesic Patch. Fentynal I gather. Just ask about the patch and I'm sure your doc will know what you are referring to.
Good luck honey,
tk
tutough
01-31-2005, 01:59 PM
There is another problem that I don't think was discussed here. When a person is on pain meds it distroys your organs. What it does is slow them down which can also cause stomach problems and make IBS worse. When your organs are slowed down they tend to start to die off a little at a time. It could be that is why your doctors are trying to get you off of the pain meds Star.
dee1964
01-31-2005, 07:18 PM
I have been on paid meds daily for a couple years. I take the Fentanyl Patch, 50mg every 3 days, and oxycodone 15mg tablts as needed, about 6 a day. I feel myself building up a tolerance, or else the pain is getting worse, I can't tell which one it is. From what I understand, there are a lot of meds, and i notice when i switch them around, like they do for me, my tolerance seems to start over. I'm nervous about thatq too, since I will be on these the rest of my life or until there's a cure. I've tried everything, and this is the only thing that gives me relief.
thisstarr
01-31-2005, 10:14 PM
There is another problem that I don't think was discussed here. When a person is on pain meds it distroys your organs. What it does is slow them down which can also cause stomach problems and make IBS worse. When your organs are slowed down they tend to start to die off a little at a time. It could be that is why your doctors are trying to get you off of the pain meds Starr.
Hi :wave:
The insurance I have is bad. They are known for killing off people, they will let you die before they will help. My doctor trys to say after I am off these med's I will be able to do a cartwheel! Yeah right! :nono: I remember what it felt like to be sick with no med's and I dont ever want to fill like that again, and I am so much worse now I could not handle it!
I know pain med's and taking med's for a longtime is bad, but what can I do? I am in unbearable pain, Disable and 25! I suffer so bad with chronic pain I cant handle the pain, each day is hard, so I cant image not having anything to get rid of it. I wish there was a cure for this Illeness. What we deal with is so not right.
No Fair~
HUGS,
STARR :angel:
~Here's to pain Free days~
Hi :wave:
The insurance I have is bad. They are known for killing off people, they will let you die before they will help. My doctor trys to say after I am off these med's I will be able to do a cartwheel! Yeah right! :nono: I remember what it felt like to be sick with no med's and I dont ever want to fill like that again, and I am so much worse now I could not handle it!
I know pain med's and taking med's for a longtime is bad, but what can I do? I am in unbearable pain, Disable and 25! I suffer so bad with chronic pain I cant handle the pain, each day is hard, so I cant image not having anything to get rid of it. I wish there was a cure for this Illeness. What we deal with is so not right.
No Fair~
HUGS,
STARR :angel:
~Here's to pain Free days~
rosebuddy
02-02-2005, 01:50 PM
Hi I am new to the boards, usually just listen. I have taken percocet since April, when I had onset of FMS. I had CMP first.
I also take tramadol (Ultram) and generic Neurontin. Unfortunately, I am unable to tolerate the antidepressants that help with pain and sleep, due to urinary retention.
I am blown away by the previous posts. And remember when i hurt so bad I couldn't lay on my tummy and lay each side of my face down flat. It was the first time i had gotten that far in my physical therapy and i was practicing at home on my dining room table. I thought of all the women out there with no insurance who are in a world of pain and don't even understand what's wrong with them because they don't have the money to buy the right books or to get on the internet. I cried for them instead of me. And made a conscious decision to do what i could to be an advocate for them. I have come a long way since then and this post in a round about way has reminded me of that.
I was approved for SSD the first time which is a miracle. It has been a rough road. I am coming out on the other side with bodywork and meds and the depression is better. So my purpose, besides getting my house clean, after months of being in bed, laying on the sofa, going to PT and to my other doctors, and doing my exercises and stretches, is to be active in helping others with this illness.
Donna
I also take tramadol (Ultram) and generic Neurontin. Unfortunately, I am unable to tolerate the antidepressants that help with pain and sleep, due to urinary retention.
I am blown away by the previous posts. And remember when i hurt so bad I couldn't lay on my tummy and lay each side of my face down flat. It was the first time i had gotten that far in my physical therapy and i was practicing at home on my dining room table. I thought of all the women out there with no insurance who are in a world of pain and don't even understand what's wrong with them because they don't have the money to buy the right books or to get on the internet. I cried for them instead of me. And made a conscious decision to do what i could to be an advocate for them. I have come a long way since then and this post in a round about way has reminded me of that.
I was approved for SSD the first time which is a miracle. It has been a rough road. I am coming out on the other side with bodywork and meds and the depression is better. So my purpose, besides getting my house clean, after months of being in bed, laying on the sofa, going to PT and to my other doctors, and doing my exercises and stretches, is to be active in helping others with this illness.
Donna
Burns
02-03-2005, 01:44 AM
Starr -- Hi. I just wanted to let you know that you are not alone...I seem to have a VERY high tolerance for pain medication too. Yes, people look at me like I am a freak or something because of the amount I have to take to even affect me a little. I hate that feeling...I can't help the way my body responds to medication. I sure wish it would be different.
Just thought I'd let you know that you are not alone.
Take care,
ann
Just thought I'd let you know that you are not alone.
Take care,
ann
thisstarr
02-03-2005, 03:42 AM
Starr -- Hi. I just wanted to let you know that you are not alone...I seem to have a VERY high tolerance for pain medication too. Yes, people look at me like I am a freak or something because of the amount I have to take to even affect me a little. I hate that feeling...I can't help the way my body responds to medication. I sure wish it would be different.
Just thought I'd let you know that you are not alone.
Take care,
ann
Hi There, :wave:
Thank you for responding to me, it means so much to know I am not the only one. I hate being like this! It is hard when your in so much pain and what would knock out a hourse doesnt even faze you, and all you want is to be out of pain and you cant. The doctors thinks your lying and it is all in your head :eek: and cant believe it , this is so not fair to us, we should be able to get out of pain just like everyone else, but we cant. Our bodies need so much more medication to reach the same level as others, I am 5'2 128 and 25yrs I am not huge or really little but my body cant take so many drugs into its system and not faze me like others. I wish we could detox our bodys to be normal again.
I have been waiting to get my SSI Disablity for 3 years now and it still may take another year to get a hearing, I need this so bad and the system is so messed up! I dont have a laywer I am not sure if I should get one? I dont know what I am going to do I cant wait that long! I wish I could speed up my case! I cant take the pain and stress anymore!
Thanks for caring :)
Hugs,
STARR :angel:
~Here to pain free days~
Just thought I'd let you know that you are not alone.
Take care,
ann
Hi There, :wave:
Thank you for responding to me, it means so much to know I am not the only one. I hate being like this! It is hard when your in so much pain and what would knock out a hourse doesnt even faze you, and all you want is to be out of pain and you cant. The doctors thinks your lying and it is all in your head :eek: and cant believe it , this is so not fair to us, we should be able to get out of pain just like everyone else, but we cant. Our bodies need so much more medication to reach the same level as others, I am 5'2 128 and 25yrs I am not huge or really little but my body cant take so many drugs into its system and not faze me like others. I wish we could detox our bodys to be normal again.
I have been waiting to get my SSI Disablity for 3 years now and it still may take another year to get a hearing, I need this so bad and the system is so messed up! I dont have a laywer I am not sure if I should get one? I dont know what I am going to do I cant wait that long! I wish I could speed up my case! I cant take the pain and stress anymore!
Thanks for caring :)
Hugs,
STARR :angel:
~Here to pain free days~
tutough
02-03-2005, 10:21 AM
Hi There, :wave:
Thank you for responding to me, it means so much to know I am not the only one. I hate being like this! It is hard when your in so much pain and what would knock out a hourse doesnt even faze you, and all you want is to be out of pain and you cant. The doctors thinks your lying and it is all in your head :eek: and cant believe it , this is so not fair to us, we should be able to get out of pain just like everyone else, but we cant. Our bodies need so much more medication to reach the same level as others, I am 5'2 128 and 25yrs I am not huge or really little but my body cant take so many drugs into its system and not faze me like others. I wish we could detox our bodys to be normal again.
I have been waiting to get my SSI Disablity for 3 years now and it still may take another year to get a hearing, I need this so bad and the system is so messed up! I dont have a laywer I am not sure if I should get one? I dont know what I am going to do I cant wait that long! I wish I could speed up my case! I cant take the pain and stress anymore!
Thanks for caring :)
Hugs,
STARR :angel:
~Here to pain free days~
Star, yes get a lawyer and also right a letter to your congressman. My wife had to do just that before she got her ssi started.
Thank you for responding to me, it means so much to know I am not the only one. I hate being like this! It is hard when your in so much pain and what would knock out a hourse doesnt even faze you, and all you want is to be out of pain and you cant. The doctors thinks your lying and it is all in your head :eek: and cant believe it , this is so not fair to us, we should be able to get out of pain just like everyone else, but we cant. Our bodies need so much more medication to reach the same level as others, I am 5'2 128 and 25yrs I am not huge or really little but my body cant take so many drugs into its system and not faze me like others. I wish we could detox our bodys to be normal again.
I have been waiting to get my SSI Disablity for 3 years now and it still may take another year to get a hearing, I need this so bad and the system is so messed up! I dont have a laywer I am not sure if I should get one? I dont know what I am going to do I cant wait that long! I wish I could speed up my case! I cant take the pain and stress anymore!
Thanks for caring :)
Hugs,
STARR :angel:
~Here to pain free days~
Star, yes get a lawyer and also right a letter to your congressman. My wife had to do just that before she got her ssi started.
ravenstardust
02-04-2005, 03:35 AM
:wave: What am i going to do ??? At this point I'm already at the point where most of the time not much seems to help . I was useing a 100mg durgesic patch but my little free meds card expired so I' ve just gone through 2 weeks of withdrawls ... I'll never use the patch again but only because I've got such a tolerence to it . Currently I'm stuffed full of demoral and darvon and 1600 mg's of ibuprofen and due to a tumble I took yesterday that involved a 100+ pound pit bull I'm in a lot of interesting pain even now ... I've got a new doctor so when I find out what if anything he can do I'll come back and share . However when the pain is more than I can bear I head to my local ER and they know me well enough that I can usually get a very very large morphine opr stadol shot then they send me home to bed ... :yawn: :D
thisstarr
02-04-2005, 05:53 AM
Star, yes get a lawyer and also right a letter to your congressman. My wife had to do just that before she got her ssi started.
HI TUTOUGH, :angel:
The last time I was looking for a laywer it was before the deadline to get my paperwork in to the SSI office for the hearing stage, they wanted information I didnt have and I was so stressed out I did it myslef. I need help in speeding up my case. Does anyone know if I can go down to SS and get a copy of my whole record? I live in Ontario California, anyone live near me?
Also how do I write my Congressman? How do I find out his address and what do I say? What will this do? I am 25 but I know I sould like a 10 yrs, the pain affects the way I think, I hate it! I dont know how to go about this!
Thanks anything would be helpful!
HUGS,
STARR
~Here's to pain free days~ :angel:
HI TUTOUGH, :angel:
The last time I was looking for a laywer it was before the deadline to get my paperwork in to the SSI office for the hearing stage, they wanted information I didnt have and I was so stressed out I did it myslef. I need help in speeding up my case. Does anyone know if I can go down to SS and get a copy of my whole record? I live in Ontario California, anyone live near me?
Also how do I write my Congressman? How do I find out his address and what do I say? What will this do? I am 25 but I know I sould like a 10 yrs, the pain affects the way I think, I hate it! I dont know how to go about this!
Thanks anything would be helpful!
HUGS,
STARR
~Here's to pain free days~ :angel:
tutough
02-04-2005, 09:40 AM
Star,
Go to the web, and do a search on your state congressman. It will tell you who they are and their address, phone number and all. Then write your letter explaining how sick you are, how that you have been trying for so long to get SSI, and that you need their help in doing it.
Go to the web, and do a search on your state congressman. It will tell you who they are and their address, phone number and all. Then write your letter explaining how sick you are, how that you have been trying for so long to get SSI, and that you need their help in doing it.
thisstarr
02-14-2005, 08:12 AM
Star,
Go to the web, and do a search on your state congressman. It will tell you who they are and their address, phone number and all. Then write your letter explaining how sick you are, how that you have been trying for so long to get SSI, and that you need their help in doing it.
Hi Everyone, :wave:
SORRY IF I HAVE TOLD THIS STORY BEFORE I FORGOT IF I DID, I THINK I DID BUT NOT ALL OF IT.
Ok I have been figting for my SSI/SSD disablity whatever the right name is for over two years I think it may even be 3. When I called the SS office last week she said I probably wont hear ANYTHING about my hearing untill Jan of 2006 :eek: :eek: :nono: :nono: I cant NOT wait this long. I am 25 years old I need my Disablty so bad. I feel they are giving me a hard time due to my age, but I paid into the system.
Just a little bit of Semi-health history,I was in the hospital for 2 months due to stomach pain and throwing up so much and not being able to keep anything down and was throwing up blood. The pain was so bad I thought I was going to die, my Panereis(SP) was inflamed so they kept me in the hospital and after they treated that I was still in serve pain they did test after test stuck tubes in me a million times, poked and poked, they had to change my IV everyday it wouldnt stay in and my vein would move out for some reason and cause pain, so many nurses had to poke me at least 3 times I was so bursed and couldnt take it anymore, one time 4 nurse tried and could not get my IV in so they had to call down some main important head person I think he was above a doctor forgot the name (Fibo fog) had to come in to put my IV in. He was in shock knowone could get it even he had trouble he wanted to put it in my foot! (OUCH)!!!
My arms kept swelling from the IV I mean bad like a 800 pound man my arms and hands and fingers were huge it was scary. finally they were mad that they could not find anything wrong and since I was on med's at home Morphine & Valium and was given these on top of pain shots they told my husband it is all in my head, I just want the drugs and the FM is a Excuse women use, and they had him beliving this, When you have chronic pain it is so hard to cope with it and get any relief. It really sadded me how people dont believe in FMS or think it is an excuse or it is all in our heads, or nurses that dont even know what it is! They went to freaken school!!
I was on 4MG of Deloted(SP) while I was there and they were freaken it was going to kill me everytime and they were shockd I was not asleep and then when I would sleep they would wake me up scared I was going to die and I was precfetly fine untill I got woken up...lol..I was told 2mg of this drug would knock out a 200 pound guy and he stop breathing and I am 5/1 and 129 not very big, but my body sucks up drugs like water, :rolleyes: I just dont get why I cant get any pain relief, not even for a bit!
back to the surgey part, sorry I am in alot of pain so I am story telling and venting at the sametime thanks for understand everyone! It is 4am and I cant sleep due to pain.
Well they finally said we are going to cutt you open and looking inside, we dont know what else to do so I had no Idea what type of surgery I was going to have if any, I was scared first surgey ever they said maybe it is my Gallblader but all my test the Higha scan/ultrasound was all normal. So I still dont get if they were normal why did this hospital take it out!!! So I thought that was werid. I wake up and they took my gall bladder out, dam it hurt so bad my FM made it ten times worse, I was so thankful I was in the hosiptal I cant belive they do that one day and your out, I was dying! There would of been no way outpaitent NOWAY! They said my gallbladder just didnt look right and stopped working? I was still in pain and I also have a Hitial Herena(SP) I think that is causing me pain really bad right now, I have serve pain in the middle of my breast and it is going to my ribs both of them I cant stand it! After my long stay I had to go back to the hosptal a diffrent one the other did not want to amit me, and I had another surgery, they had to streth my bio dubts (SP) out and they were clogged? So I was told I have no Idea why this happened but same pain all over again, it felt like. I been rushed to the ER from passing out from throwing up calling 911 and taking to the hospital, I have gone for chest pains more then once, I use a walker and cane 99.9% of the time, I can go on forever but I have so much going on going on with me. I have FMS, Chronic Headaches, TMJD, IBS, GERD, Cheast pains, Acid reflex, Antitity(sp) Need to sleep with O2 on my nose because I will grasp for air if I dont at night. I have extreme weakeness in my legs, Fatugie, Memory problems, ETC. My Doctor now does not approve of the O2 they gave it to me when I came home from the hospital, I had to go to another hospital to get care my HMO hospital would not amit me and if I was there 2 months it had to be bad!!!!
NOW ABOUT SSI?SSD:
Ok So I should write my state congressman. I know this may sound really dumb but how and what do I say? :confused: I live in Upland/Ontario, California, so I need to write CA congressman and explain how I am disable and I have been trying to get approved for my disablty for a long time? I dont know what to do.
Do any of you know if I have a right to pick up a copy of my Hole file at the SS office or do I have to call them over the phone? I want to see what they have on me, I want to know if there is false 411 in there about me, I feel there Really is? How do I go about this? I dont get why I cant get approved. Sorry to sound like a cry baby life has just been so hard and seeing what my old friends are doing and going and not being able to have qulity(SP) of life, they say that for older people but dont young people deserve the same? I think so!!
How do I get a Lawyer if my case is is in the process of waiting for a hearing to be set! will this speed things up for me at all? Does anyone know of a good Laywer? Need Ontario CA?
Thanks for all your help everyone! God Bless
Thank you to everyone for being so helpful and supportive it really helps!
Take Care,
~Here's to pain Free Days~
HUGS,
STARR :angel:
~HAPPY VALENTINES DAY~
Go to the web, and do a search on your state congressman. It will tell you who they are and their address, phone number and all. Then write your letter explaining how sick you are, how that you have been trying for so long to get SSI, and that you need their help in doing it.
Hi Everyone, :wave:
SORRY IF I HAVE TOLD THIS STORY BEFORE I FORGOT IF I DID, I THINK I DID BUT NOT ALL OF IT.
Ok I have been figting for my SSI/SSD disablity whatever the right name is for over two years I think it may even be 3. When I called the SS office last week she said I probably wont hear ANYTHING about my hearing untill Jan of 2006 :eek: :eek: :nono: :nono: I cant NOT wait this long. I am 25 years old I need my Disablty so bad. I feel they are giving me a hard time due to my age, but I paid into the system.
Just a little bit of Semi-health history,I was in the hospital for 2 months due to stomach pain and throwing up so much and not being able to keep anything down and was throwing up blood. The pain was so bad I thought I was going to die, my Panereis(SP) was inflamed so they kept me in the hospital and after they treated that I was still in serve pain they did test after test stuck tubes in me a million times, poked and poked, they had to change my IV everyday it wouldnt stay in and my vein would move out for some reason and cause pain, so many nurses had to poke me at least 3 times I was so bursed and couldnt take it anymore, one time 4 nurse tried and could not get my IV in so they had to call down some main important head person I think he was above a doctor forgot the name (Fibo fog) had to come in to put my IV in. He was in shock knowone could get it even he had trouble he wanted to put it in my foot! (OUCH)!!!
My arms kept swelling from the IV I mean bad like a 800 pound man my arms and hands and fingers were huge it was scary. finally they were mad that they could not find anything wrong and since I was on med's at home Morphine & Valium and was given these on top of pain shots they told my husband it is all in my head, I just want the drugs and the FM is a Excuse women use, and they had him beliving this, When you have chronic pain it is so hard to cope with it and get any relief. It really sadded me how people dont believe in FMS or think it is an excuse or it is all in our heads, or nurses that dont even know what it is! They went to freaken school!!
I was on 4MG of Deloted(SP) while I was there and they were freaken it was going to kill me everytime and they were shockd I was not asleep and then when I would sleep they would wake me up scared I was going to die and I was precfetly fine untill I got woken up...lol..I was told 2mg of this drug would knock out a 200 pound guy and he stop breathing and I am 5/1 and 129 not very big, but my body sucks up drugs like water, :rolleyes: I just dont get why I cant get any pain relief, not even for a bit!
back to the surgey part, sorry I am in alot of pain so I am story telling and venting at the sametime thanks for understand everyone! It is 4am and I cant sleep due to pain.
Well they finally said we are going to cutt you open and looking inside, we dont know what else to do so I had no Idea what type of surgery I was going to have if any, I was scared first surgey ever they said maybe it is my Gallblader but all my test the Higha scan/ultrasound was all normal. So I still dont get if they were normal why did this hospital take it out!!! So I thought that was werid. I wake up and they took my gall bladder out, dam it hurt so bad my FM made it ten times worse, I was so thankful I was in the hosiptal I cant belive they do that one day and your out, I was dying! There would of been no way outpaitent NOWAY! They said my gallbladder just didnt look right and stopped working? I was still in pain and I also have a Hitial Herena(SP) I think that is causing me pain really bad right now, I have serve pain in the middle of my breast and it is going to my ribs both of them I cant stand it! After my long stay I had to go back to the hosptal a diffrent one the other did not want to amit me, and I had another surgery, they had to streth my bio dubts (SP) out and they were clogged? So I was told I have no Idea why this happened but same pain all over again, it felt like. I been rushed to the ER from passing out from throwing up calling 911 and taking to the hospital, I have gone for chest pains more then once, I use a walker and cane 99.9% of the time, I can go on forever but I have so much going on going on with me. I have FMS, Chronic Headaches, TMJD, IBS, GERD, Cheast pains, Acid reflex, Antitity(sp) Need to sleep with O2 on my nose because I will grasp for air if I dont at night. I have extreme weakeness in my legs, Fatugie, Memory problems, ETC. My Doctor now does not approve of the O2 they gave it to me when I came home from the hospital, I had to go to another hospital to get care my HMO hospital would not amit me and if I was there 2 months it had to be bad!!!!
NOW ABOUT SSI?SSD:
Ok So I should write my state congressman. I know this may sound really dumb but how and what do I say? :confused: I live in Upland/Ontario, California, so I need to write CA congressman and explain how I am disable and I have been trying to get approved for my disablty for a long time? I dont know what to do.
Do any of you know if I have a right to pick up a copy of my Hole file at the SS office or do I have to call them over the phone? I want to see what they have on me, I want to know if there is false 411 in there about me, I feel there Really is? How do I go about this? I dont get why I cant get approved. Sorry to sound like a cry baby life has just been so hard and seeing what my old friends are doing and going and not being able to have qulity(SP) of life, they say that for older people but dont young people deserve the same? I think so!!
How do I get a Lawyer if my case is is in the process of waiting for a hearing to be set! will this speed things up for me at all? Does anyone know of a good Laywer? Need Ontario CA?
Thanks for all your help everyone! God Bless
Thank you to everyone for being so helpful and supportive it really helps!
Take Care,
~Here's to pain Free Days~
HUGS,
STARR :angel:
~HAPPY VALENTINES DAY~
tkgoodspirit
02-14-2005, 06:57 PM
Starr,
I have heard that each state has a different time frame for SSD cases. 2006 is an awful long time, and I know it's so hard and frustrating to wait. I've been turned down and had to start all over twice. Filling out those forms are a bear aren't they?
I have also heard posters say that writing your congressman CAN help in some cases.
You know what I would do, I would take your question to the Disability board, see if any one their has had a similar situation, maybe from your own state.
I usually don't have that long of a wait. 6 months between replies and hearings here in Alabama seems to be the norm.
Good luck honey, it's hard, but I had my case manager at the SS office who handled my second app tell me not to quit, not to give up. They don't want to give you money! LOL So I'm going to use a phrase that was used in the 70's:
Keep on Trucking!
Here's wishing you a good spirirt.
And DO write your congressman/woman, it can't hurt, and that is what they are there for, you and me. Make 'em earn their money. :)
I have heard that each state has a different time frame for SSD cases. 2006 is an awful long time, and I know it's so hard and frustrating to wait. I've been turned down and had to start all over twice. Filling out those forms are a bear aren't they?
I have also heard posters say that writing your congressman CAN help in some cases.
You know what I would do, I would take your question to the Disability board, see if any one their has had a similar situation, maybe from your own state.
I usually don't have that long of a wait. 6 months between replies and hearings here in Alabama seems to be the norm.
Good luck honey, it's hard, but I had my case manager at the SS office who handled my second app tell me not to quit, not to give up. They don't want to give you money! LOL So I'm going to use a phrase that was used in the 70's:
Keep on Trucking!
Here's wishing you a good spirirt.
And DO write your congressman/woman, it can't hurt, and that is what they are there for, you and me. Make 'em earn their money. :)