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6 years ago  ::  May 08, 2008 - 12:03PM #1
Avalon1
Posts: 12
Good day,

Hard to find this group again with all the site changes. I do not know if anyone remembers me however I am glad to be back.
Yes, still in pain. I guage the pain in the morning from 1-10 in the morning , when Morphine has worn off, just to make sure I am still not better. Many of you may be familiar with the 1-10 method with 1 being no pain, 5 moderate , and anything over that severe. I suppose I have gotten use to pain as many of us have to some extent after so many years living with it. Today , I am my usual 5-6. So I don't feel guilty taking my pain medications.
I finally was awarded SSDI , Yeah! However after loosing almost everything in the process it  is still not enough. Waiting for a rather large sum of back pay. It amazes me that Disability, my federal goverment, is holding MY money and I do not know when it will show up. Does that make any sense to anyone? It was hard enough just to get my money back for my monthly payments to start.
Anyway, I hope all our well today as to be expected and that the pain for all of you will not be that bad.
I go to the pain doctors today. Suddenly , without warning I got another contract I had to sign at the last visit and a urine test. The DEA is really pressuring the pain doctors to not treat pain. This doctor I go to had never had this problem and now this, I could really use a increase in meds however I won't be asking today, Why? Because I do not want them to think I am an addict and for that matter I am afraid for without the much needed medicine I receive monthly, I would be a cripple.It is a sorry shame that people in this country as said many times before cannot get the pain relief we deserve not to mention our own money from the Federal goverment. I suppose any of us that get meds and /or SSDI should be grateful anyway with the state of our nation. Enough! No politics needed in this forum. Just needed to vent.Will be back soon.
Avalon
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6 years ago  ::  May 10, 2008 - 12:26AM #2
karbie
Posts: 3,329
Dear Avalon,
You aren't alone in the signing a new contract, blood and urine samples, etc. I even had to agree to random PILL counts. Considering the amount of different medications I have from them alone, I'd have to have an extended visit, especially since all mine are mail-order so they have to sort 90 days supply per drug....not my fault.

When I switched from Oxycodone from Vicodone last year, I of course got Queen Grump to do the count....which had to be rechecked and signed by yet another nurse. It was supposed to be SO good. Yeah. Right. I was trying not to take as much tylenol. I could take vicodone every 6 hours, but it only lasted four. Those last 2 hours were very long. Guess what? The oxycodone only lasted for TWO hours...out of 6--so I was definitely back to taking Tylenol to fill in that horribly long gap. I brought them back, too. One of the doctors at mine has Fibro too--lucky man!--his solution was to change my dosage on vicodone to every FOUR hours. AS you can imagine, he gets blessed by me quite often.

Last time when they asked me if I was taking me medications properly, I told them I wasn't and it wasn't my fault. Fentyl patches are changed every 3 days.For some reason this shipment had just been shipped that morning...which meant that I was on Day 5 of 3 day patches. I had figured keeping even a trickle in my system beat full-scale withdrawal from 175 mg a day to 0. They broke their own rules and gave me a prescription for 3 patches of each, promptly kicked out by the insurance company because the order I DIDN'T have made it look like I was trying to double dip. Fortunately the pharmacist-an old man working part-time who didn't care who he pissed off at the insurance company--prevailed, and I got the patches. Then the other ones came the next day, express mail paid BY caremmark.

I am trying to ignore all the dirty pots and dishes my son brought home from his girlfriends dorm since today was the end of the term. It's in the main pathway in the kitchen where I can trip and fall on it if I want a drink. He took one of my GOOD knifes--I finally have a knife block with matching knifes after 30 years of marriage and he just throws it in a bag with other things.

He knows I had a bad weekend; we told him I fell yesterday...and he leaves me crap to do for him. Will I do it. Yes, because it's time for the Spring Ant Invasion. When I wanted to cook breakfast for everyone on Tuesday, I couldn't find my favorite skillet. Silly me! I should have checked under the damned sofa sleeper he's had sprawled out the last month claiming he couldn't breathe in his own bed.

The guys are FINE that the bathtub can't be used unless you bail out the water afterward. They just take a shower in the basement...where no one wants me to go, since I've broken bones in 2 different falls. Besides, my husband tells me, I'm too heavy and the stairs won't take my weight...even though he weighs more than I do...and they seem to hold him just fine.

I had a bad weekend because I ended up walking around a shopping mall all the way around while R's ring got sized...I was along to pay for it. P got to sit in the car. I ended up with an arthritis/Fibro/migraine combo, which I super-sized with heel pain from the bone spurs I'd gotten shots for on Wednesday.
Then my husband went on to "constructive criticizm"
"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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6 years ago  ::  May 10, 2008 - 3:32PM #3
Avalon1
Posts: 12
Wow! Thank you for that. You really had a lot on your mind.
I know how you feel, at least from my position, because I don't think that anyone can really know how we feel. Let's remain friends and support one another.
I wish I could say " kick out Mister 30yrs of marriage for his abuse issues" unfortunately that is not my place. I have had to do that to keep myself from getting worse.
However, the harrowing experience of doing something like that may not be the answer. I do know and encourage you to take the time for yourself, be yourself, and love yourself more and more everyday. Your worth it. The good news about life when we are living in a hell is that we can always depend on change.
Peace to you and may you have a good Mother's day even if you get minimal to no recognition or not it is our day to be proud of what we have tried to accomplish since our children's birth. The rest was up to them.
Peace and understanding,
Avalon
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6 years ago  ::  May 11, 2008 - 12:56AM #4
karbie
Posts: 3,329
Dear Avalon,
Thank you--I needed that. We will be going out, but since standing in line for long periods and having servers try to rush you out isn't that much fun, we're going out Tuesday night instead--which happens to be the one night that crab legs don't cost extra. Not my thing, but my son loves them. A few years ago I wanted to try an Oriental buffet for my birthday, and when my son asked if we could come for HIS birthday, we've been going there since then. In fact, we've even had his girlfriend with us twice--for our anniversary and my birthday. We like her very much.
  Phil doesn't really "get" emotional abuse because his father WAS abusive. He stayed home longer than most men to make sure Dad didn't go off and kill Mom and all of them like he threatened once. He used to hit Mom until the day she realized that she had become bigger than he was and punched him out. Knowing where someone is starting from makes a difference. My husband's feet were permanently damaged because Dad threw such a fit if he wanted a new pair of shoes that he'd wait until his toes were bunched up. By the time he went to a doctor in his 20's, there wasn't anything that could be done.
  So from the beginning, Chris has gotten new shoes as soon as he needed them, even when his feet were growing fast or if I had to charge them. In fact, there were a few times that one of his friends who was a size behind him got barely worn shoes--and I was just glad they didn't go to waste. Same for glasses or anything else. And since my own father was verbally abusive, i am repeating a pattern--but I don't think that Chris will. And unlike either of our fathers, Phil apologizes. That doesn't take it back out of my head though.
   And as for leaving the marriage--he hasn't dumped me, even with no sex and a house that looks like a dump. (Of course, the person who last offered was me--years ago-and was turned down for being too repulsive.) The irony of it all is that the main injury that set so much in motion was from a fall at a health spa when I was in better physical shape than I'd been in high school. Go figure.
  Anyway, thanks for responding and being so understanding--just when i needed it most.
Karen
"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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6 years ago  ::  May 11, 2008 - 6:33PM #5
MarleneEmmett5
Posts: 1,704
[QUOTE=Avalon1;486436]Good day,

Hard to find this group again with all the site changes. I do not know if anyone remembers me however I am glad to be back.
Yes, still in pain. I guage the pain in the morning from 1-10 in the morning , when Morphine has worn off, just to make sure I am still not better. Many of you may be familiar with the 1-10 method with 1 being no pain, 5 moderate , and anything over that severe. I suppose I have gotten use to pain as many of us have to some extent after so many years living with it. Today , I am my usual 5-6. So I don't feel guilty taking my pain medications.
I finally was awarded SSDI , Yeah! However after loosing almost everything in the process it  is still not enough. Waiting for a rather large sum of back pay. It amazes me that Disability, my federal goverment, is holding MY money and I do not know when it will show up. Does that make any sense to anyone? It was hard enough just to get my money back for my monthly payments to start.
Anyway, I hope all our well today as to be expected and that the pain for all of you will not be that bad.
I go to the pain doctors today. Suddenly , without warning I got another contract I had to sign at the last visit and a urine test. The DEA is really pressuring the pain doctors to not treat pain. This doctor I go to had never had this problem and now this, I could really use a increase in meds however I won't be asking today, Why? Because I do not want them to think I am an addict and for that matter I am afraid for without the much needed medicine I receive monthly, I would be a cripple.It is a sorry shame that people in this country as said many times before cannot get the pain relief we deserve not to mention our own money from the Federal goverment. I suppose any of us that get meds and /or SSDI should be grateful anyway with the state of our nation. Enough! No politics needed in this forum. Just needed to vent.Will be back soon.
Avalon[/QUOTE]
Avalon:
Hi, My names MarleneEmmett5. I can sympathize with yyou when it comes to pain.
I've gotten migraines since I was 6~ also I have really bad knees,one I screwed up really bad in 2005.
The aliment that gives me my worst pain is when my lower back goes into spasm.
I fell down a flight of waxed steps eleven years ago~I've got three herniated discs & 3 compressed verterbre.
The pain can get so bad sometimes that my husband has seen me in tears!!!

Now when it comes to pain ~ I sometimes can be a "wimp", but most of the time I will stick it out till I can't take
it anymore. I've been known to hold out 5-6 days with a Migraine!!!
I'm supposed to be taking Hydrocodione,Flexeril 10 or 5mg for my back. I only take it when I really have to.
I'm on Fiorniol 3 for Migraines~ but usually take Excedrine Migraine most times.
I've been know to sleep wearing my sunglasses!
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6 years ago  ::  May 11, 2008 - 6:33PM #6
MarleneEmmett5
Posts: 1,704
[QUOTE=Avalon1;486436]Good day,

Hard to find this group again with all the site changes. I do not know if anyone remembers me however I am glad to be back.
Yes, still in pain. I guage the pain in the morning from 1-10 in the morning , when Morphine has worn off, just to make sure I am still not better. Many of you may be familiar with the 1-10 method with 1 being no pain, 5 moderate , and anything over that severe. I suppose I have gotten use to pain as many of us have to some extent after so many years living with it. Today , I am my usual 5-6. So I don't feel guilty taking my pain medications.
I finally was awarded SSDI , Yeah! However after loosing almost everything in the process it  is still not enough. Waiting for a rather large sum of back pay. It amazes me that Disability, my federal goverment, is holding MY money and I do not know when it will show up. Does that make any sense to anyone? It was hard enough just to get my money back for my monthly payments to start.
Anyway, I hope all our well today as to be expected and that the pain for all of you will not be that bad.
I go to the pain doctors today. Suddenly , without warning I got another contract I had to sign at the last visit and a urine test. The DEA is really pressuring the pain doctors to not treat pain. This doctor I go to had never had this problem and now this, I could really use a increase in meds however I won't be asking today, Why? Because I do not want them to think I am an addict and for that matter I am afraid for without the much needed medicine I receive monthly, I would be a cripple.It is a sorry shame that people in this country as said many times before cannot get the pain relief we deserve not to mention our own money from the Federal goverment. I suppose any of us that get meds and /or SSDI should be grateful anyway with the state of our nation. Enough! No politics needed in this forum. Just needed to vent.Will be back soon.
Avalon[/QUOTE]
Avalon:
Hi, My names MarleneEmmett5. I can sympathize with yyou when it comes to pain.
I've gotten migraines since I was 6~ also I have really bad knees,one I screwed up really bad in 2005.
The aliment that gives me my worst pain is when my lower back goes into spasm.
I fell down a flight of waxed steps eleven years ago~I've got three herniated discs & 3 compressed verterbre.
The pain can get so bad sometimes that my husband has seen me in tears!!!

Now when it comes to pain ~ I sometimes can be a "wimp", but most of the time I will stick it out till I can't take
it anymore. I've been known to hold out 5-6 days with a Migraine!!!
I'm supposed to be taking Hydrocodione,Flexeril 10 or 5mg for my back. I only take it when I really have to.
I'm on Fiorniol 3 for Migraines~ but usually take Excedrine Migraine most times.
I've been know to sleep wearing my sunglasses!
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6 years ago  ::  May 12, 2008 - 11:46AM #7
karbie
Posts: 3,329
Dear Marlene,
   I can understand not taking the hydrocone unless you feel like you just HAVE to have it....but if you only take the Flexeril "when you need it"...you are losing out, because it's one of the drugs that you need to take at least 7-10 days before it has built up enough in your bloodstream for it to be of any use.
  I know that if I want to get home from the hospital faster to refuse painkillers--my father taught me that one....I got to go home the morning after I had fusion on my upper spine because I'd only had 3 shots of morphine when I was allowed one an hour. Since I'd broken my tail bone a few days before that surgery, I WOULD have taken more...but with my call button alternately on my roommate's blood pressure monitor, the floor behind my bed, and worked through my IV tubes and the bed  control, and a nurse who didn't wear a name tag, introduce herself, or sign in on the board...and you had to know your nurse's name to get one...I WANTED to go home!!
  It isn't being a "wimp" to take something for pain. If you are one of those people who goes to sleep if anything lowers your pain level at all, I can see not taking things. I have FMS, but no one had warned me about "Fibro fog" until I was in it very, very deeply. I was substituting pain for energy to run on because it was one thing I knew I'd never run out of. If i took anything to reduce the pain, I'd fall asleep...and so I might not be taking anything until late afternoon or even bedtime. I started having aphasia, couldn't think clearly, couldn't read anything I hadn't read before, finally even my vision was beginning to get hazy.
  Then I found out that my brain was shutting down areas to survive--and emotional control, logical thinking, and vocabulary are some of the systems that go first, and if it goes on long enough, you can lapse into a coma and die. I had figured when my body had had enough I'd just go to bed and sleep for most of a week. Took awhile to be able to think clearly again, too.
   I'm not knocking your ability to deal with pain; but if you have fibromyalgia, it can carry a hefty price tag.  You aren't being a "wimp" by taking medication to relieve pain...that's what it is for. All most of us get from our pain medication is the ability to keep on going--it just gets the pain levels down enough to keep us from curling into whimpering balls. (If we are flexible enough, that is!!)
  I've been banned from my own basement after my last fall--the only bones i've ever broken were on those stairs--the last fall was headfirst from about the second carpeted step to the concrete floor below. Broke the tip off my right elbow, tore tendons in my wrist, and I have a dent in my forehead they waited until last to stitch, so there's another scar to add to the ones I got breaking out a windshield with my forehead many years ago.
  You sound like you are a very strong person; does the medicine just not made enough of a difference to be worth it when you take it, or do you just hate giving in to the pain? I'm glad you found the forums.
Karen
"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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6 years ago  ::  May 12, 2008 - 5:24PM #8
MarleneEmmett5
Posts: 1,704
[QUOTE=karbie;493709]Dear Marlene,
   I can understand not taking the hydrocone unless you feel like you just HAVE to have it....but if you only take the Flexeril "when you need it"...you are losing out, because it's one of the drugs that you need to take at least 7-10 days before it has built up enough in your bloodstream for it to be of any use.
  I know that if I want to get home from the hospital faster to refuse painkillers--my father taught me that one....I got to go home the morning after I had fusion on my upper spine because I'd only had 3 shots of morphine when I was allowed one an hour. Since I'd broken my tail bone a few days before that surgery, I WOULD have taken more...but with my call button alternately on my roommate's blood pressure monitor, the floor behind my bed, and worked through my IV tubes and the bed  control, and a nurse who didn't wear a name tag, introduce herself, or sign in on the board...and you had to know your nurse's name to get one...I WANTED to go home!!
  It isn't being a "wimp" to take something for pain. If you are one of those people who goes to sleep if anything lowers your pain level at all, I can see not taking things. I have FMS, but no one had warned me about "Fibro fog" until I was in it very, very deeply. I was substituting pain for energy to run on because it was one thing I knew I'd never run out of. If i took anything to reduce the pain, I'd fall asleep...and so I might not be taking anything until late afternoon or even bedtime. I started having aphasia, couldn't think clearly, couldn't read anything I hadn't read before, finally even my vision was beginning to get hazy.
  Then I found out that my brain was shutting down areas to survive--and emotional control, logical thinking, and vocabulary are some of the systems that go first, and if it goes on long enough, you can lapse into a coma and die. I had figured when my body had had enough I'd just go to bed and sleep for most of a week. Took awhile to be able to think clearly again, too.
   I'm not knocking your ability to deal with pain; but if you have fibromyalgia, it can carry a hefty price tag.  You aren't being a "wimp" by taking medication to relieve pain...that's what it is for. All most of us get from our pain medication is the ability to keep on going--it just gets the pain levels down enough to keep us from curling into whimpering balls. (If we are flexible enough, that is!!)
  I've been banned from my own basement after my last fall--the only bones i've ever broken were on those stairs--the last fall was headfirst from about the second carpeted step to the concrete floor below. Broke the tip off my right elbow, tore tendons in my wrist, and I have a dent in my forehead they waited until last to stitch, so there's another scar to add to the ones I got breaking out a windshield with my forehead many years ago.
  You sound like you are a very strong person; does the medicine just not made enough of a difference to be worth it when you take it, or do you just hate giving in to the pain? I'm glad you found the forums.
Karen[/QUOTE]
Karen:
I don't take the "heavy duty medication" all the tme cause I really don't like what it does to me.
First. with all of the other medication i take one of the side effects is constipation~ taking meds like
Hydrocodine or Flexeril or Fiornoril only makes is worse.
Two: The second side effect is the "fuzzybrain fog" that they leave you with~ This can last till the meds
are out of your system. It depends upon what kind of med you took and when.
The only "cure' for "brain fog" is strong coffee~ and lots of it!.
Stairs and i don't mix either!~ I fell down my brother in law's stairs many years ago and cracked my skull open.
The second time was 11 years ago in my then condo~ here's the kicker, I was Board President at the time!
I had to wait to sue the building~ and then lost. They said it was my weight.
What it was was: Bad lighting,no signs, and a wet freshly waxed set of stairs!!!
Karen , you asked if the meds made a differance ? Sometimes~ But I've found that what the meds really do
"take the edge off the pain for awhile" just long enough to let you accomplish some things.
And yes. I do hate "giving into the pain"~ I want to prove to myself that Im stronger then the pain is!
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6 years ago  ::  May 12, 2008 - 8:35PM #9
karbie
Posts: 3,329
Dear Marlene,
I'm sorry you lost your suit--i'd rather a flight of stairs looked a little dingy than see them waxed to a lethal shine. Weight doesn't make you fall, but wet waxed stairs will. In my case the accident that set everything in motion for me was at a health spa. At that time, the showers were fiberglass without any strips to make them less slippery, with a nice high concrete ledge> the first two stalls were fro rinsing off only, and you weren't supposed to shave your legs in any of them. I stepped in the shower, and as soon as the water hit the floor, I took a hard fall because the person before me used baby oil. I SHOULD have just stayed there until they called an ambulance--thank God i didn't go alone. They told me to sit in the whirlpool and I'd be "Just fine". I was a week or so pregnant and didn't know it--so  I got their first "offer" the day AFTER I miscarried--$102! That didn't even cover the week I missed at work, much less anything else. I did settle out of court--it had dragged on so long that by the time they sent me to their "expert'..after finding out the doctor they really wanted was MY  doctor, that I was 7 months pregnant and NO WAY was I going to consent to back x-rays for them. All these years later it still seems like a stupid question--except to show that I refused to submit. By the time the lawyer had subtracted everything from my share, I ended up with about $1100. I just was afraid of slipping on ice or them appealing forever and I wanted it OVER. Still, it was a far cry from their first offer. And any sympathy I might have had over the miscarriage would have been tempered by the fact that I was VERY pregnant then. Our son is 21 now.
  My main pain relief is fentyl (Duragesic) patches. I have Irritable Bowel Syndrome--or did--the patches will give a normal person constipation--but if you have IBS, I ended up with a NORMAL system--something I've never had and the one time in my life that a side effect worked in my favor. I'm about to give up for today--I had my first vicodin at 5:30 PM after running errands all day after being in such bad shape yesterday i spent almost all of it in bed. Time and paying college tuition before the penalty date are reasons to get up no matter what. We got a notice Saturday that the penalty date on summer tuition started the 14th instead of the 16th--now the 16th is the day they'll drop you from your classes. I object to giving them an extra penny by this point.
  Weather changes aren't friendly to my body--but I always know when to stock up before a big storm hits about a day before it dawns on the weatherman. I figure I'll just found uses for what i have. Not all of it is from that fall--the degenerative disc runs in the family...or maybe walks after it hits. My poor 26 year old niece was diagnosed with Fibromyalgia last year--I wish she'd skipped that one.
Hang in there--and remember we aren't giving in to the pain--we're just turning down the volume so we can hear ourselves think!
Karen
"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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6 years ago  ::  May 13, 2008 - 1:04AM #10
Avalon1
Posts: 12
As I said in the first reply
I gauge my pain with a 1-10 method.
In the am when I wake up I gauge my pain.
It is a good way to get in touch with my body.
I usually am in about a 4-6 pain level in the morning and as rididculas as it sounds I then take my prescribed pain medication without guilt.
My question is why should I feel guilty for being in chronic pain?
It is very unfortunate that I have developed chronic pain however it is a fact now. My family, partner, kids, you name it do not understand.
More suffering for me , emotionally.
I really do not understand why so many people get mad at me for being in pain.
Do you???
Peace and Grace,
Avalon
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