momado and crystal do you have a attorny??and may i ask how many times you both have been denied? If you do and you have been denied twice,TELL that attorny of yours you cant wait anymore, or your going to be homeless !and ask him if he can do a on the record decision. best of luck roll
I’m with you Roll…
I am waiting for the decision on my first appeal and if this one comes back negative, I am going straight to an attorney. This is nonsense. We’re just supposed to take it? No way! Won’t do it!
Congrats Crystal!! Writing someone who needs your vote is a good thing. I’m thinking of writing a letter to mine before the appeal results come in and asking him if he realizes how many people are close to being homeless because they can’t get the disability they deserve.
I had my hearing in the beginning of Feb. That was after two denials and getting a lawyer. My lawyer told me to write to my congressman to get the judge to speed up on her decistion. I first applied three years ago and then again 18 months ago. I had to wait that long just to get the hearing. But we are running out of time. So my lawyer said if I wrote the letter based on our situation I might get a better and faster result. So, I did. And I am just happy I got a responce back. That they took the time to read it. And now I hope I get word from the other guy that he will help me. Best of luck to everyone and write to your congressman.
I’m so glad that someone finally responded to you crystal. Keep fighting, and remember we are all here pulling for you!!!
Katie
Thank you. You are all wonderful people.
For every 12 doctors out there that don’t believe you there is one doctor that is willing to treat the pain and listen with an open heart. Pain clinics are better about handing out high doses of pain medications because they are more knowledgeable about the drugs for one. The drug Inforcement Agency is cracking down on doctors all over so they are scared to death to hand out scripts to those of us that need them. If your doctor isn’t willing to give you the drugs that you need ask to go to a pain clinic.
When a person goes to a pain clinic they may have to go to couseling so that these doctors can evaluate the mind and the body. These doctors may do drug testing to make sure that you aren’t abusing the drugs too but isn’t it worth it to get the medications that we need? I am afraid to list the drugs that I take here because they are in high demand and I am a target for a break in. I keep my medications hidden because there are many people that abuse them. I am not one of those abusers though so I want to protect myself.
I feel for all of you that are being questioned and looked at like you want these drugs so that you can abuse them. I know I can’t function without the drugs that I take. Pain consumes are every moment and has ruined our lives. We have lost friendships, jobs, homes and even our soles because of the pain. Don’t give up. There is a doctor out there that will listen. You just need to find him/her.
For every 12 doctors out there that don’t believe you there is one doctor that is willing to treat the pain and listen with an open heart. Pain clinics are better about handing out high doses of pain medications because they are more knowledgeable about the drugs for one. The drug Inforcement Agency is cracking down on doctors all over so they are scared to death to hand out scripts to those of us that need them. If your doctor isn’t willing to give you the drugs that you need ask to go to a pain clinic.
When a person goes to a pain clinic they may have to go to counseling so that these doctors can evaluate the mind and the body. These doctors may do drug testing to make sure that you aren’t abusing the drugs too but isn’t it worth it to get the medications that we need? I am afraid to list the drugs that I take here because they are in high demand and I am a target for a break in. I keep my medications hidden because there are many people that abuse them. I am not one of those abusers though so I want to protect myself.
I feel for all of you that are being questioned and looked at like you want these drugs so that you can abuse them. I know I can’t function without the drugs that I take. Pain consumes are every moment and has ruined our lives. We have lost friendships, jobs, homes and even our soles because of the pain. Don’t give up. There is a doctor out there that will listen. You just need to find him/her.
I already go to a pain clinic…I’ve already been evaluated by the pain shrinky dink who determined I was not lying and was indeed, in need of pain relief.
But here it comes again…wen’t to a manageable place for a little while until I woke up in the middle of the night.
My son asked me why, when I’m sleeping , does my face get all crinkled up? My pain shows itself then, to my son. During the day, I try to put on and keep on a brave face.
My hips are hurting and my backpain is vibrating down my right leg and is making me want to scream. So my few vicodins I’m allowed a day in addition to my methadone, arent doing squat. My doc doesn’t believe that after my methadone I can still be having pain.
Yep, I must be making all this up in my head.
Sue,
I find that if my medications aren’t working that I call between visits and talk to the nurse. Call every week if you need to until they believe you . Methadone didn’t do anything for me either. I still take up to eight Vicodin a day with the regular pain medications and am looking at another increase in meds soon. I just can’t do it this week because I am flying to a hospital in MA and don’t want to switch meds before leaving on a trip. Hang in there Sue and don’t give up. Call them and tell them your story. Keep calling and if that doesn’t work it is time to switch pain clinics.
Good Luck and many hugs
Hi , Well I had no choice but to have back surgery a little over a year ago. I suffer from Fibromyaligia, degenerative disc disease and a few other wonderful things. I was unable to walk , or do anything for that matter for months. Nothing helped, not Physical therapy, Spinal injections by a Pain Dr. In addition I am so lucky to be allergic to all Pain meds. The only thing I wasn’t allergic to is oral morphine but at 90 mg. a day it did nothing to relieve my pain. So I am divorced and alone and live every day with pain that well you know what is like. Very depressing and I am disgusted.
Hi , Well I had no choice but to have back surgery a little over a year ago. I suffer from Fibromyaligia, degenerative disc disease and a few other wonderful things. I was unable to walk , or do anything for that matter for months. Nothing helped, not Physical therapy, Spinal injections by a Pain Dr. In addition I am so lucky to be allergic to all Pain meds. The only thing I wasn’t allergic to is oral morphine but at 90 mg. a day it did nothing to relieve my pain. So I am divorced and alone and live every day with pain that well you know what is like. Very depressing and I am disgusted.
I’ve been reading several of these posts and have a question. Several of you suffering from chronic pain have mentioned the drug methadone? Unless its being spelled worng, I thought Methadone was used for narcotics withdraw? My pain meds aren’t working (I really need surgery at this point) and would be interested in what is working for others. But Methadone? Currently I take Naproxen, Skelaxan, Tramadol HCL and on occassion I take Hydrocodone. I am getting no relief but if I stop or cut back on these meds, I feel even worse (if that’s at all possible). Any suggestions or advise would be appreciated. Please see my profile for info on my condition. Thanks.
Man Have I been have the pain issues this week. My Dr. prescibed vicodin but it only gives slight relief for a short time. The pain in my abdomin feels like labor expect no cute little packages comes with it and at this point I believe it will be never ending. I am frusrated and sick and tired of feel sick and tired. This disease is quite mean I’ve been on a liquid diet for about the last 2 weeks and the pain is making me crazy. I feel bad for my family I haven’t been able to do much lately. I hope I get to feeling better before my next quarter of school starts. I just want some answer for this disease and the pain. Ya know I am so mad about the judgements others put on those suffering from chronic pain. I am also angry about those who have abused the system which is the cause of the difficulty in getting pain relief we all need. I have 1st hand experience with a person abusing the system for pain meds my sister stole my identity in order to get pain meds in my name. She got so many at one point that when I went to get a pain med presciption filled after surgry I was denied them because she had gotten so many in my name. I am so angry. Just what I needed during the most difficult time in my life my sister being so deseptive. I think this has caused me the most pain though it is emotional. It breaks my heart, I had to cut her out of my life.
Hi;
I am writing to thank JustSue and Tender56 for their suggestions with regard to jury duty. I went to my Doctor and requested a letter with regard to my medical condition. The Doctor asked me to leave the summons with her and she would look after it.
She phoned the jury manager and explained everything on the phone. The next day I got a phone call from the jury manager telling me I do not need to come in for jury duty. She told me about the Doctors phone call and pending a letter from the Doctor my name is off this round of selections and would be perminantly removed when the Doctors letter arrives. The jury manager will send me a letter at that point to in case I have any problems.
Thanks again for the help
grannygray
Granny Gray, I"m so glad for you that our suggestions worked!
Calikat -- The methadone you are speaking of is the same thing....it was origanally inteded for a pain medication...and later found to help heroin addicts get off their drug....
Methadone is a heavy narcotic...I really doubt that your doc would go from occasional use of oxycodone or hyrocodone to methadone... I was put on it AFTER being on oxycontin. The main difference however, in the methadone and the oxy & hydro codones is that the methadone doesn't contain much, if any, acetaminophin...where as the others aka vicodin, percoset, and the like all have anywhere from 350 to 500 mgs of acetomitaphin (tylenol) which after long term use and in high doses as a lot of us end up taking) can cause serious liver damage.
For a long time I felt very awkward using methadone..like anyone who knew...including the pharmacists....would think I was a heroin junkie. When ever my pharmacy gets a new person, they ALWAYS ask why I take it....you'd think they didn't learn it was a painkiller in pharm. school. Also because I'm so young, well, not soo young (38) they have a hard time believing I can suffer from chronic pain. It's not till I came here, I realized I wasn't alone at all.
Hope that explains it for you!
take care, <3
Sue
Granny Gray, I"m so glad for you that our suggestions worked!
Calikat -- The methadone you are speaking of is the same thing....it was origanally inteded for a pain medication...and later found to help heroin addicts get off their drug....
Methadone is a heavy narcotic...I really doubt that your doc would go from occasional use of oxycodone or hyrocodone to methadone... I was put on it AFTER being on oxycontin. The main difference however, in the methadone and the oxy & hydro codones is that the methadone doesn't contain much, if any, acetaminophin...where as the others aka vicodin, percoset, and the like all have anywhere from 350 to 500 mgs of acetomitaphin (tylenol) which after long term use and in high doses as a lot of us end up taking) can cause serious liver damage.
For a long time I felt very awkward using methadone..like anyone who knew...including the pharmacists....would think I was a heroin junkie. When ever my pharmacy gets a new person, they ALWAYS ask why I take it....you'd think they didn't learn it was a painkiller in pharm. school. Also because I'm so young, well, not soo young (38) they have a hard time believing I can suffer from chronic pain. It's not till I came here, I realized I wasn't alone at all.
Hope that explains it for you!
take care, <3
Sue
JustSue, Thanks for the info. I didn't know all that. I have already tried many different pain meds over the years, I just didn't keep good enough records and not sure what all I took. At this point, I don't think it matters what I take. The last doctor explained to me that until we find a surgeon that can do the surgery on both the Scoliosis and fuse the Spondylolthesis, not much will help the pain. Surgery will take probably 60% off it away. I can't imagine that, but that's what he said. Still currently searching for the surgeon. I did qualify for the Medicade and I am now insured, so now I can go to a pain doctor, which I think I will do while I wait on word of a surgeon. There are only 4 in PA and I'm trying to get an appointment with #2. Number 1 was actually in MD and doesn't take PA Medicade....tho he did say he could help me. There is nothing worse than finding a doctor that says he can help you...than finding out he won't take what insurance you do have.
Anyway...I rambling. Thanks so much for the information. If anyone out there has any other opinions or suggestions for meds, please advise. I like to go to doctors prepared. My pain is bad enough, that I just can't sit here at the computer and research like I'd like too. anything you guys can tell me is appreciated.
Granny Gray... I am so glad that you are getting off the jury duty list. What a wonderful doctor you have to make that call and write the letter for you. Its so validating when they listen.
We must not get used to hearing "NO". Although we must accept the things that happen when suffering chronic pain, in terms of learning to take care of our bodies in new ways; accepting those limitations doesn't mean we have to buy into what others think we "should" be doing. Its hard to be our own advocates when we are hurting. hurting make the "fight" harder. I am trying to learn to see that those who do not suffer from chronic pain need to be educated.
Bethany...i want to share something with you about a friend of mine who had a relative steal her identity. This may seem harsh, but it really happened. When the theft was discovered, she called the police. She even had to get a new social security number the circumstances were so bad. Her relative was tried and is now serving jail time for what happened, but my friend has been given a new life. Involving drugs in the deception is so bad...I feel for you having to deal with that betrayal. The legal process cleared her name...and the same could happen for you.
It takes a lot of courage to stand our ground when our physical capabilities are diminished...the things is we are not our illnesses. We are still people who deserve the best life has to offer. We are not diminished in our capacities to be loving and caring human beings. We have not sacrificed our right to receive the same from others because we are in pain.
Tiger sent me a note that I want to share. The concept is that he has decided not to let the pain control his life...that it's a conscious decision every day. That was so inspiring to me.
It's a conscious decision everyday to look for the beauty...to allow the positive to the front of my brain. It mixes with fear...and pain but it still needs to come out of me. Now that I know that I have degenerative disc disease, and another thinning disc...there is fear.
I have to give my husband the space to collect his own courage, while I work on mine. I have to trust that he will be there, and still love me, and be able to adjust because that love is more important than his disappointment that I can't walk a 10 mile hike. That he will grow in his own personal depth because of what he learns about himself.
The point is that, yes, we suffer some limitations in learing to deal with chronic pain...and some of those limitations we have to climb over. Those around us are placed in their limitations as well in learning to deal with us. We cannot take responsibility for the limitations of others. They must be held accountable for their own process. That is an essential part in being our own advocate...that we not take on how others...(be they husbands or society as a whole)..deal with us. I think it makes us stronger and more able to recognize the path we must follow. What we lack in physical ability, we gain in the stamina of our minds, our gentleness with ourselves and with others. What's inside counts.
I have had family visiting and haven't been here for a few days..I guess I had a lot to get off my chest. Thanks for being here everyone, I wish you all as pain free a day as possible and as many good hugs. (with a few extra for your pocket) warmly, Christina
Hi Tender thanks for you info on the Id theft. This has been the biggest pain of my life. I have spent hours on the phone with collection agencies trying to clear things up. As far as my meds we have went as far as me having a pin that any med clinic or pharmacy has to ask me before they bill my insurance for a drs. appointment or presription. As far as my chronic illness and pain I am trying my best to see the positive side of things. It really is impotant for all of to advocate for ourselves cause with that we are advocating for our friends in pain as well. Thanks for the friendly advice. It is so appreciated. Peace and pain free rest I am praying for, all my find suffering in pain along with me.
velzy, It was YOU that had your identity stollen? I was trying to find that post. I am so sorry. What a terrible thing to have happen. I hope that you are able to completely get that taken care of so that getting your medications aren't bad enough.
I have issues with medications not working long enough. If a break through medication is going to last the average person 4-6 hours then it will only last 2-3 for me. So, I am able to take 8 hydrocodone/percoset in a day along with Fentenyl patches. The Patches are to be changed every three days for an average person so I get to change them ever other day. Still that is not enough. I don't know why they wear off so quickly but I have found that this is common with the disorder that I suffer from. Maybe my tissue is absorbing them different? Not sure but having the doctors believe me at first was an issue. Now that they know me and we have built trust they are willing to work with me much better. Once I go in for this research study I can get this in writing and they will feel a bit more safe about doing this too.
Those that have abused drugs (for the wrong purpose) have made it difficult for all of us that really need them. If pain wasn't just bad enough we have trust, theft, financial and doctors feeling threatened by the DEA. It will always be like this so building a relationship with your doctor is VERY important. If the doctor questions your integrity at all they won't help you so be very careful when asking for a higher strength medication. Don't cry to seem despirate. Don't be angry either. The one time I did cry the doctor said that I looked strung out and wasn't willing to help me. What really happened is I missed two night doses of medications and I was having horrible withdrawls. Have you ever thought you took your medications then the next morning you go to your pill case and they are there? That is what happened to me. I even set the alarm on my phone as reminder but on the way to my pill case I must have gotten distracted. Now I don't shut the alarm off until after I take them.
I also find that if you are good about keeping a journal to show the doctor that they seem a bit more trusting. Sure you may be miserable when entering his office but if you can log it for weeks or even a month it is a lot more believeable.
Write down the date, the time and your pain scores several times a day. Write down what you did that day to prove you were not swinging a sludge hammer or doing something that can cause pain. Write down how you slept at night and also how many break through medications that were needed. Even after you obtain a higher potency of medication it is good to write down any side effects that you may be having from the medications. If you continue doing this both you and your doctor are able to visualize your pain better. Don't forget to talk about your depression and how that may interfere.