lkavaloff
01-18-2005, 04:20 PM
Hello,
I'm new here and I just want to meet ppl that have chronic pain too... I"m a 26female and I have R/A, Lupus, Sjogrens Syndrome, Von Willebrands disease and Celiac Disease. I have tried so many pain med's but right now I"m on MS Contin 75mg in Morning and 30mg at bedtime, I also take 2ml of Liquid Morphine for BT prn or Precadan...I'm just looking at being able to talk to ppl with the same conditions as me....I hope to hear from ppl soon...
Lisa :)
I'm new here and I just want to meet ppl that have chronic pain too... I"m a 26female and I have R/A, Lupus, Sjogrens Syndrome, Von Willebrands disease and Celiac Disease. I have tried so many pain med's but right now I"m on MS Contin 75mg in Morning and 30mg at bedtime, I also take 2ml of Liquid Morphine for BT prn or Precadan...I'm just looking at being able to talk to ppl with the same conditions as me....I hope to hear from ppl soon...
Lisa :)
Sponsor
Shoreline
01-18-2005, 07:31 PM
Hi lisa, You have some problems I have heard of and some problems I haven't. But there are lots of folks in pain here and lots whos' only way to manage their pain is opiates.
After 3 failed surgeries, years of pain mnagement without opiates I found the right clinic and right doc that will treat my pain. After 4+ years on oral meds I had a pump implanted that delivers morphine and baclofen.
So pain wise, we have that in common and if your your looking for folks dealing with the same daily struggle, you found us. ;)
You may be unique in that MSContin lasts 12 hours for ya, The liquid orals come in several strengths, 20mg per ml, 5mgs per ml, etc. I would think with twice a day dosing your using the stronger solution to bridge the gap in between doses. Maybe you need the larger dose in the morning because by the 12 hour your pain is out of control.
One of the basic principles of long acting meds is that it's easier to keep pain in check than it is to bring a high level down. This is usually achieved with a more constant serum level so the pain doesn't spirall out of control. But if it works for you, I won't argue it. LOL
You defintitely want to try to educate yourself about the meds your taking and the options you have. Ask questions, do some searches. The internet defintitely levels the playing field when it coms to basic understandings of how meds work and phylosophies of PM and alternatives to opiates and on and on.
As far as meds, most every manufacturer has a web site, and on that site they have a product list, on that page there is usally a link to the full prescribing info if you were curious or wanted info about a med. If you want personal experience, we have that too, but what works for one doesn't always work for another.
Welcome, Dave :)
After 3 failed surgeries, years of pain mnagement without opiates I found the right clinic and right doc that will treat my pain. After 4+ years on oral meds I had a pump implanted that delivers morphine and baclofen.
So pain wise, we have that in common and if your your looking for folks dealing with the same daily struggle, you found us. ;)
You may be unique in that MSContin lasts 12 hours for ya, The liquid orals come in several strengths, 20mg per ml, 5mgs per ml, etc. I would think with twice a day dosing your using the stronger solution to bridge the gap in between doses. Maybe you need the larger dose in the morning because by the 12 hour your pain is out of control.
One of the basic principles of long acting meds is that it's easier to keep pain in check than it is to bring a high level down. This is usually achieved with a more constant serum level so the pain doesn't spirall out of control. But if it works for you, I won't argue it. LOL
You defintitely want to try to educate yourself about the meds your taking and the options you have. Ask questions, do some searches. The internet defintitely levels the playing field when it coms to basic understandings of how meds work and phylosophies of PM and alternatives to opiates and on and on.
As far as meds, most every manufacturer has a web site, and on that site they have a product list, on that page there is usally a link to the full prescribing info if you were curious or wanted info about a med. If you want personal experience, we have that too, but what works for one doesn't always work for another.
Welcome, Dave :)
twisten
01-18-2005, 07:47 PM
Hi Lisa. I just want to jump in here and give you a quick hello and welcome. Currently for pain meds I'm on Mscontin 30 mg in the a.m and 60 p.m. with 10 mg of oxyir for bt. I'm also back on elavil. Kids and hubby are wanting supper so I have to go. I hope to see you stick around, this is a great site with lots of great peeps in it.
BrittleBones
01-19-2005, 09:47 AM
:wave: Hi Lisa. I'm also new to this board. I haven't posted very much. I have chronic pain from multiple vertabrae fractures and surgeries. I have taken all kinds of pain meds but am currently taking methadone for pain. It is helping me more than anything else I have tried. I too have RA and scleraderma. I think you'll find lots of support here. So welcome! Kathy Mac
lkavaloff
01-19-2005, 03:41 PM
Hello,
Thanks so much for the post that made me so happy this morning to see that some people have read my post and feel what I feel. I would like to give a more indepth back ground of me and my illness.
Well 1st off when I was 3, I fell off the monkey bars and I dislocated the radial head in my elbow, and we lived in a very small town and they didnt realize until 5 days later when someone was really able to look at my ex-rays and they found that break, so my mom had to bring me back and they put on a full cast right to my shoulder (so I had been walking around for 5 days with this broken elbow), anways after a week or 2 once the swelling went down I took off my cast cause it was so uncomfortable, so they just kept my arm in a sling the rest of the time, and well I guess it didnt heal right cause always after then I had aches and pains in my elbow joint and it makes this awful grinding noise. So anyways I kept on going on with my life. I was a very active child and I was into figure skating competively and I was always excersing, dancing,weight's all sorts of things to be in tip top shage for figure skating. In grade 7 I got Mono once and I pretty much was really very ill and in bed for a whole year but I started to feel better. So I got better from that I was continueing with my skating 24/7 it was my life and dream to be in the Olypmpics. Here and there I had a couple of very bad falls and I had broken my left wrist (the same arm that I had injured my elbow when I was 3) oh about 5 times and the last time I was unable to use my wrist and hand for about 6 months it was so swollen for so long I had to get sugrey to bring the swelling down and I had to go into intensive phyiso therpy everyday to gain use of wrist and had again it came back slowly but I was able to heal from that and be able to use my left arm again and I might add that I am left handed and I had to learn to write and eat with my other hand. And its always funny because when you fall you automaticly will put out the hand you write with and use to break your fall, so I have only injured my left wrist.
While this was all going on I started to get really bad pains right in my spinal cord really in it, also really bad pains in my left injured arm, as well I started to get pains in my legs so bad sometimes that I could walk sometimes and I would be stuck in bed with bad spianl pains, whole left arms pains and legs. Of course my Mom found it strange for her 14 old daughter to be in all this pain and she knew that this was not grwoing pains what so ever. So she took me to see our family Doctor and she tested me for Lupus and R/A and it came back flase postive or something. I know that back in the early 90's testing for that was really hard. So she sent me to see a Rhematiogist.
So I went to see him and he basically said the pains your feeling are normal and that I am not exceriseing enough and that I should do more then I am, I told him I figure skate over 40 hours a week, as well run, do ballet and lift weights and I was in tip top shape. I told him what do you want me to do cut out sleeping...lol...ya right. So I left it at that for then cause that Dr. was a jerk. Then I had major family problems with my Mom and I found out that for 2 years she had been faking me and everyone else in my family that she had cancer and I found out that she didnt. So make a long story short on that, I was removed from my mothers care and was put in child welfare. But I had this dumd loyatly to my Mom and she didnt want me to be in childwelfare at all and told me if I did stay with someone from that she would disown me, so me be a scared 16 year old girl alone, I went to the streets and I was on the streets for about 1 and half and then finally and went into child welfare and got the help that I need to get my life back on track and through that whole time I was still get all these pains everywhere on my body. I also get Mono again and it took me over a year to get over that again.
So now I'm living on my own and I was 20 and I started to want to find out why I was getting these pains. At the time it was mostly in my left elbow the most. So I started with my family doctor and he did ex-ray's on the elbow and there was nothing he could see himself wrong, so he sent me for a nerve test as well on that arm and I found out that my alnuer nerve was running really slow. So he sent me to see and Othro Surgeon and he was a really old guy really old school if you know what I mean. So he told me that there was nothing that he could do for me and he gave me a Cortizone shot in my elbow and told me to just live with it. Here I was expecting that I was going to get some surgrey to fix my elbow. But no that's no the case, I'm still left with no answer's as why I'm getting pains in my elbow so bad that I cant even touch certain parts or even think about touching it it just make my nerves in there hurt. My family doctor through this whole time which took a year to get in to see that Othro Specialist was giving me prekadan for the pain. I got 100pills a month 5mg ones I was taking 2 every 4 hours. So here I was back to square one again and in more pain then ever all over my whole body.
Then one day I was talking with a friend of mine that is a masseage therispt and I was telling all the pains I feel and she told me that she has some clients that have Lupus and R/A that have that same sort of pain. It was a light when on in my head and I thought back to myself that's what I had, I rememebered that I was tested once and and that ******* rhem I saw. So I went to my family doctor, told him that I think this is what I have and he order the blood work and 2 weeks later he got the test back and sure enough my test came back positve for that. So he sent to see a rhem. But here in Canada yes we have free healthcare pretty much but the bad thing it can sometime takes up to a year to get into to see a specialist. So I did a little phone work and I got his asstiants phone number and I told her that it has taken me 2 years to find out what I had and that I'm in so much pain that I could possiably wait 6 months to get in to see him. So she pulled some strings and I was in to see him within 2 weeks.
I RAN OUT OF ROOM SO LOOK FOR THE NEXTED POST FOR THE REST OF MY STORY
Thanks so much for the post that made me so happy this morning to see that some people have read my post and feel what I feel. I would like to give a more indepth back ground of me and my illness.
Well 1st off when I was 3, I fell off the monkey bars and I dislocated the radial head in my elbow, and we lived in a very small town and they didnt realize until 5 days later when someone was really able to look at my ex-rays and they found that break, so my mom had to bring me back and they put on a full cast right to my shoulder (so I had been walking around for 5 days with this broken elbow), anways after a week or 2 once the swelling went down I took off my cast cause it was so uncomfortable, so they just kept my arm in a sling the rest of the time, and well I guess it didnt heal right cause always after then I had aches and pains in my elbow joint and it makes this awful grinding noise. So anyways I kept on going on with my life. I was a very active child and I was into figure skating competively and I was always excersing, dancing,weight's all sorts of things to be in tip top shage for figure skating. In grade 7 I got Mono once and I pretty much was really very ill and in bed for a whole year but I started to feel better. So I got better from that I was continueing with my skating 24/7 it was my life and dream to be in the Olypmpics. Here and there I had a couple of very bad falls and I had broken my left wrist (the same arm that I had injured my elbow when I was 3) oh about 5 times and the last time I was unable to use my wrist and hand for about 6 months it was so swollen for so long I had to get sugrey to bring the swelling down and I had to go into intensive phyiso therpy everyday to gain use of wrist and had again it came back slowly but I was able to heal from that and be able to use my left arm again and I might add that I am left handed and I had to learn to write and eat with my other hand. And its always funny because when you fall you automaticly will put out the hand you write with and use to break your fall, so I have only injured my left wrist.
While this was all going on I started to get really bad pains right in my spinal cord really in it, also really bad pains in my left injured arm, as well I started to get pains in my legs so bad sometimes that I could walk sometimes and I would be stuck in bed with bad spianl pains, whole left arms pains and legs. Of course my Mom found it strange for her 14 old daughter to be in all this pain and she knew that this was not grwoing pains what so ever. So she took me to see our family Doctor and she tested me for Lupus and R/A and it came back flase postive or something. I know that back in the early 90's testing for that was really hard. So she sent me to see a Rhematiogist.
So I went to see him and he basically said the pains your feeling are normal and that I am not exceriseing enough and that I should do more then I am, I told him I figure skate over 40 hours a week, as well run, do ballet and lift weights and I was in tip top shape. I told him what do you want me to do cut out sleeping...lol...ya right. So I left it at that for then cause that Dr. was a jerk. Then I had major family problems with my Mom and I found out that for 2 years she had been faking me and everyone else in my family that she had cancer and I found out that she didnt. So make a long story short on that, I was removed from my mothers care and was put in child welfare. But I had this dumd loyatly to my Mom and she didnt want me to be in childwelfare at all and told me if I did stay with someone from that she would disown me, so me be a scared 16 year old girl alone, I went to the streets and I was on the streets for about 1 and half and then finally and went into child welfare and got the help that I need to get my life back on track and through that whole time I was still get all these pains everywhere on my body. I also get Mono again and it took me over a year to get over that again.
So now I'm living on my own and I was 20 and I started to want to find out why I was getting these pains. At the time it was mostly in my left elbow the most. So I started with my family doctor and he did ex-ray's on the elbow and there was nothing he could see himself wrong, so he sent me for a nerve test as well on that arm and I found out that my alnuer nerve was running really slow. So he sent me to see and Othro Surgeon and he was a really old guy really old school if you know what I mean. So he told me that there was nothing that he could do for me and he gave me a Cortizone shot in my elbow and told me to just live with it. Here I was expecting that I was going to get some surgrey to fix my elbow. But no that's no the case, I'm still left with no answer's as why I'm getting pains in my elbow so bad that I cant even touch certain parts or even think about touching it it just make my nerves in there hurt. My family doctor through this whole time which took a year to get in to see that Othro Specialist was giving me prekadan for the pain. I got 100pills a month 5mg ones I was taking 2 every 4 hours. So here I was back to square one again and in more pain then ever all over my whole body.
Then one day I was talking with a friend of mine that is a masseage therispt and I was telling all the pains I feel and she told me that she has some clients that have Lupus and R/A that have that same sort of pain. It was a light when on in my head and I thought back to myself that's what I had, I rememebered that I was tested once and and that ******* rhem I saw. So I went to my family doctor, told him that I think this is what I have and he order the blood work and 2 weeks later he got the test back and sure enough my test came back positve for that. So he sent to see a rhem. But here in Canada yes we have free healthcare pretty much but the bad thing it can sometime takes up to a year to get into to see a specialist. So I did a little phone work and I got his asstiants phone number and I told her that it has taken me 2 years to find out what I had and that I'm in so much pain that I could possiably wait 6 months to get in to see him. So she pulled some strings and I was in to see him within 2 weeks.
I RAN OUT OF ROOM SO LOOK FOR THE NEXTED POST FOR THE REST OF MY STORY
lkavaloff
01-19-2005, 03:42 PM
Here is the rest of my story.....
So when I went into meet him he took my full family history and made a 1st diagnose with R/A. Now I alreadyt new I have Von Willebrands Disease which is a bleeding disorder where your bllod doesnt clot. I was so happy at the time to finally have someone yes the pain your feeling is very real. So he put me on Plaquenil 200mg TID for the 1st month and then 200mg QID( I think that 2 times a day) I told him that I was taking perkadans for the pain and of course he wasnt too happy about that, and he was like I"m going to try and get your pain under control so that you dont have to take them, he doesnt presribe any opiates which didnt matter to me because my family doctor will and always prescribe any of that for me whenever needed. So I guess I"m very lucky there. So after about a year of having some really bad flare-up and going back to see the Rhem, he also said that I had Lupus and Sjogrens Syndrome. He said that I was 1st person in Calgary that they have been able to diagnosed with Sjogrens and with a combination of auto immune disease. I'm so happy with my Rhem hes the best, he's the top Rhem here in Alberta Canada and he is also a professor at the Uofcalgary (that's where I'm from) So I had many flare up's and he would put me on a course of predisone for 3 weeks and that would sometime help. But after 2 years of taking the plaquenil I wasnt feeling any btter with my pain even wrose I felt. I had been in the hospital 4 times in 2 years and each stay was over a month or so. I would be on iv morphine every 4 hours at 7.5mg and trust me that only brought my pain down to about an 8. The last time I was in the hospital I was on the same morphine as before. I had gotten a cold which turned into strep and because of the antibotics I had gotten Canaditia in the mouth so bad, the wrose the doc's had ever seen that it had spread to my face and down my throat, so they had to treat that with iv antiboctic's and once they got that cleared up they then trying to get me through this flare-up cause I was in so much pain all the time. I was on 8mg of Morphine every 4 hours on the ***, I could really sleep or walk. So my rhem wanted to try and jump start my system cause it was going into failur. So he decided that nnow the candiada was under control he was going to give me a round of predizone. He order 1 gram of Predisone through IV for 3 days, to try and jumy my immune system back. Well the 1st try of it didnt go so well. I guess the nures ran it a little too fast in iv, she had go through me in about 1 hour and once it was all done. I got this bad taste in my mouth, now you normally do with pred, but this was so strong it was like dirt and metal in my mouth and I felt like I was going to puke. So I called my nurse to give anti nausea med's when she came back I was shaking and convulsing in bed, I was aware of what was going on and I was able to talk and everything but I just couldnt stop shaking and everything. They too my vitals on the manchine that does your b/p and heart rate all at onve and it started to beep and flash lights and I remember seeing my heart beats where at 222 beats a min. So they called in a ER Doc and they gave me benedryl to counter act with the pred and I ended being ok but I had really bad shakes for about a week or so. So I spent over 2 months in the hospital and by the end that's when they introduced me to MS and Luquid Morphine. I also the whole time in the hospital and well always smoked pot, and that helps alot with pain and to be happy and to eat. So I got discharged and I was on MS Contin and Liquid Mprhine and Preajadans for BT pain. So I was starting to get better a little bit but I started having problems eating felt like I was going to be sick everytime I ate so I just started to eat or well drink power shakes they where the only that I could keep down. I had lost over 45 pounds in 6 months. I was 110 pounds and I was down to 80 pounds and that's when I went to see a GI and I found out I also have Celiac disease. That was just 2 years ago. I have been the hospital 2 more times since then I always am in for a month or so. I have been on MS Contin and Liquid Morphine and Preakan's and smoking pot non stop for over 2 years. I also switch sometime to the Duragesic patch to give the MS Contin a break. So here I am now....I'm a canadain citizen and I have fall in love with a Man from FL and I have moved down here and the weather sure has helped I have been living here for over a year. But I always go back home to canada to see my doctors cause man I have read what you guys have to go through with you doc's here gezzz I feel for you. I get all my med's shipped from Calgary that's my home in canada. Well I think that's all for now I'm sure I will write some more later like all the med's I take the stregth, how my pain is on it and what not. I want to learn more about my med's I already do know a lot about them but I want to learn more. Also I need to talk to ppl just about life and liveing with pain.
Talk to you soon...
Lisa
PS thanks for the post....I have read a lot different post you all have written...Shortline you seen to really know your stuff
Have a Great Day....
So when I went into meet him he took my full family history and made a 1st diagnose with R/A. Now I alreadyt new I have Von Willebrands Disease which is a bleeding disorder where your bllod doesnt clot. I was so happy at the time to finally have someone yes the pain your feeling is very real. So he put me on Plaquenil 200mg TID for the 1st month and then 200mg QID( I think that 2 times a day) I told him that I was taking perkadans for the pain and of course he wasnt too happy about that, and he was like I"m going to try and get your pain under control so that you dont have to take them, he doesnt presribe any opiates which didnt matter to me because my family doctor will and always prescribe any of that for me whenever needed. So I guess I"m very lucky there. So after about a year of having some really bad flare-up and going back to see the Rhem, he also said that I had Lupus and Sjogrens Syndrome. He said that I was 1st person in Calgary that they have been able to diagnosed with Sjogrens and with a combination of auto immune disease. I'm so happy with my Rhem hes the best, he's the top Rhem here in Alberta Canada and he is also a professor at the Uofcalgary (that's where I'm from) So I had many flare up's and he would put me on a course of predisone for 3 weeks and that would sometime help. But after 2 years of taking the plaquenil I wasnt feeling any btter with my pain even wrose I felt. I had been in the hospital 4 times in 2 years and each stay was over a month or so. I would be on iv morphine every 4 hours at 7.5mg and trust me that only brought my pain down to about an 8. The last time I was in the hospital I was on the same morphine as before. I had gotten a cold which turned into strep and because of the antibotics I had gotten Canaditia in the mouth so bad, the wrose the doc's had ever seen that it had spread to my face and down my throat, so they had to treat that with iv antiboctic's and once they got that cleared up they then trying to get me through this flare-up cause I was in so much pain all the time. I was on 8mg of Morphine every 4 hours on the ***, I could really sleep or walk. So my rhem wanted to try and jump start my system cause it was going into failur. So he decided that nnow the candiada was under control he was going to give me a round of predizone. He order 1 gram of Predisone through IV for 3 days, to try and jumy my immune system back. Well the 1st try of it didnt go so well. I guess the nures ran it a little too fast in iv, she had go through me in about 1 hour and once it was all done. I got this bad taste in my mouth, now you normally do with pred, but this was so strong it was like dirt and metal in my mouth and I felt like I was going to puke. So I called my nurse to give anti nausea med's when she came back I was shaking and convulsing in bed, I was aware of what was going on and I was able to talk and everything but I just couldnt stop shaking and everything. They too my vitals on the manchine that does your b/p and heart rate all at onve and it started to beep and flash lights and I remember seeing my heart beats where at 222 beats a min. So they called in a ER Doc and they gave me benedryl to counter act with the pred and I ended being ok but I had really bad shakes for about a week or so. So I spent over 2 months in the hospital and by the end that's when they introduced me to MS and Luquid Morphine. I also the whole time in the hospital and well always smoked pot, and that helps alot with pain and to be happy and to eat. So I got discharged and I was on MS Contin and Liquid Mprhine and Preajadans for BT pain. So I was starting to get better a little bit but I started having problems eating felt like I was going to be sick everytime I ate so I just started to eat or well drink power shakes they where the only that I could keep down. I had lost over 45 pounds in 6 months. I was 110 pounds and I was down to 80 pounds and that's when I went to see a GI and I found out I also have Celiac disease. That was just 2 years ago. I have been the hospital 2 more times since then I always am in for a month or so. I have been on MS Contin and Liquid Morphine and Preakan's and smoking pot non stop for over 2 years. I also switch sometime to the Duragesic patch to give the MS Contin a break. So here I am now....I'm a canadain citizen and I have fall in love with a Man from FL and I have moved down here and the weather sure has helped I have been living here for over a year. But I always go back home to canada to see my doctors cause man I have read what you guys have to go through with you doc's here gezzz I feel for you. I get all my med's shipped from Calgary that's my home in canada. Well I think that's all for now I'm sure I will write some more later like all the med's I take the stregth, how my pain is on it and what not. I want to learn more about my med's I already do know a lot about them but I want to learn more. Also I need to talk to ppl just about life and liveing with pain.
Talk to you soon...
Lisa
PS thanks for the post....I have read a lot different post you all have written...Shortline you seen to really know your stuff
Have a Great Day....
lkavaloff
01-20-2005, 01:56 PM
Oh ya one more thing that I forgot to add, was that because I wasnt diagnosed with all my illnesses when it started when I was 14 or 15, my spinal cord is all messed up too now. If they would have knowen or cared about what I had when I was a teen they could have put me in a back brace to help my spine grow straight but of course this didnt happen, so now my lower part of my spine isnt straight at all its 45% out of aligement and now its too late to try and straighten it because I have stopped growing. So now I have major back problems and major back pain and I will have to go to a chrio now for the rest of my life. One thing that I'm so lucky and happy about is that my Rhemy is such a awesome doctor and a professor too he was able to refer me to a friend of his who is the top chrio in Alberta Canada and is knowen for his work and also his resreach that is done all over the world in the medical coummunity. Cause I wouldnt just let anyone just touch my back cause I have heard and my mom has been to a bad chrio that messed her back up even more. My chrio is so sweet, in fact all my doctors now that I have found since I got diagnosed are almost like friends to me. My chrio even took time out of his day to come and give me back adjustments every 2nd day whenever I'm in the hospital and it doesnt get paid for it, he just does it out of the kindness of his heart and well cause all my doctors say I'm a very special case which I guess can be nice in a way but can also make you feel a little depressed cause you know that your kind of like a geunie pig because none of my doctors have ever had a patient with all these disease's so for them I'm a major learning tool for them....lol....I hope to hear from someone again soon. I would like to talk more about different pains med's and the ones I'm on now. As well stories to share with one another...and anything that could help me feel better...
Talk to you soon...
Lisa :) :)
Talk to you soon...
Lisa :) :)
Shoreline
01-21-2005, 12:42 PM
Hey Lisa, I haven't been myself the last few days, since my cosult with the interbventionalist at te clinic and refill of the pump,. Found out some bad news as far as bmy spine being very unstable and there is basically nothing they can do procedure wise as far as pain management.
They veiwed me flexing and extending under flowuroscopy and found the instability tha I always knew was there, I crunch and squeek and grind from b=one on bone although I'm supposed tobe fused from L1-S1. Anyway, the screws pull out of my sacrum and tethe five partically fused vertabrea slip of my sacrum, It's caled spondyliothesis, I just happened to be talking to spodelo about it the other day. I knew hard ware was broken and toggling, I knew the fusion failed, But didn't realize how unstable my spine is at the risk I'm at for severing nerves or my cord. So I'm suposed to see a spinal NS and talk about surgery or bracing or somethiing. Although I know it was unsatbale and the crunching and squeeking resound up my spine, I thought I was the only one that could here it, but He had has hand on my back as I bent forward and back and asked if I always made those sounds.
It's not always, but it's several times a day, I normally just stop what I'm doing and try to get comfy and get into a nurtral spine position. But didn't realize the risk to the nerves and cord and shearing off part of serveral vertabrea that are damaged by screws.
I was in the position of thinking nothing else could be done, or untill last year nothing else could be done, There s an incrediablly radical surgery but I don't think I could get through another. The last was 11 hours and I basically never recovered because it failed.
I spent 5 years on meds, and regardless of how you become acomadated to the feeling and side effects of these meds, They still cloud your mind to some degree, which I really hate. That's one of the reasons why I had the pump put in.
It sounds like you have a great doc as far as diagnostic ability, It's a shame things went on so long, but there may be surgical answers to problems like your elbow and back. It's just a matter of finding the right doc and weighing the benefits and knowing the potential for harm. I don't know if the meds you answered are the present standard of care for your problems. Of everything, the auto imune problems are very scarry and make you lok at life differently.
You have to be agressive about living the life you have now as in each day . If something will improve that than pursue it, but t may take seeing lots of docs. That's the dfference in the US, IF you have the money or the Insurance anor combination you may have options your not aware of. I would want to know if the meds you take fror auto imune disorders are the standard of care in the US or if they are doing anything differently. The high use of steroids and I know the cat toungue and metal taste your talking about well. Steroids can lead to osteo perosis, There is documented steroid induced osteo out there, It's an actual diagnosis. That's why I wonder if Pred is still the drug of choice. I had a friend in HS that balloned on Pred before she died and I know Lupus is a terrible disease.
As far as pain maagement, There are always plenty of options if you respond well to opiates and there isn't a way to fix it. Your dose is really what I would consider low of morphine, It's just not a very effective oral med and requires higher doses.
Different opiates hit different receptors , sometimes combinging opiates works well, using a dfferent break through med than your base med will hit a broader range of receptors. How satisfied are you with your pain management?
You do have to push yourself sometimes to get out and make smetype of life, I go through the cycles of mourning what I have lost and what has happened to my life. This certainly wasn't my plan, to be disabled at 33 and at 39 looking at another surgery after 3 have made me a wreck.
Healthy people make great asumptions about what life is like for a diabled person or somenme with CP or chronic illness. There is a genral exectation to get better and get over it. Most pepople do, but some of us don't.
This is probably a bad time for me to give advice, but if you want basic knowledge of pain management or your thinking abotut an Intrathecal morphine pump, which they can put alot of different meds besides morphine in. I can help and guide you a bit.
There isa great PM doc that's well published that explains alot about chronic pain and the basics of pain meds. Just cut and pste these into your browser
http://www.hosppract.com/issues/2000/07/brook.htm
part 2
http://www.hosppract.com/issues/2000/09/brook.htm
Was there anything specific you wanted to know about?
I'll check back later, Take care, Dave
They veiwed me flexing and extending under flowuroscopy and found the instability tha I always knew was there, I crunch and squeek and grind from b=one on bone although I'm supposed tobe fused from L1-S1. Anyway, the screws pull out of my sacrum and tethe five partically fused vertabrea slip of my sacrum, It's caled spondyliothesis, I just happened to be talking to spodelo about it the other day. I knew hard ware was broken and toggling, I knew the fusion failed, But didn't realize how unstable my spine is at the risk I'm at for severing nerves or my cord. So I'm suposed to see a spinal NS and talk about surgery or bracing or somethiing. Although I know it was unsatbale and the crunching and squeeking resound up my spine, I thought I was the only one that could here it, but He had has hand on my back as I bent forward and back and asked if I always made those sounds.
It's not always, but it's several times a day, I normally just stop what I'm doing and try to get comfy and get into a nurtral spine position. But didn't realize the risk to the nerves and cord and shearing off part of serveral vertabrea that are damaged by screws.
I was in the position of thinking nothing else could be done, or untill last year nothing else could be done, There s an incrediablly radical surgery but I don't think I could get through another. The last was 11 hours and I basically never recovered because it failed.
I spent 5 years on meds, and regardless of how you become acomadated to the feeling and side effects of these meds, They still cloud your mind to some degree, which I really hate. That's one of the reasons why I had the pump put in.
It sounds like you have a great doc as far as diagnostic ability, It's a shame things went on so long, but there may be surgical answers to problems like your elbow and back. It's just a matter of finding the right doc and weighing the benefits and knowing the potential for harm. I don't know if the meds you answered are the present standard of care for your problems. Of everything, the auto imune problems are very scarry and make you lok at life differently.
You have to be agressive about living the life you have now as in each day . If something will improve that than pursue it, but t may take seeing lots of docs. That's the dfference in the US, IF you have the money or the Insurance anor combination you may have options your not aware of. I would want to know if the meds you take fror auto imune disorders are the standard of care in the US or if they are doing anything differently. The high use of steroids and I know the cat toungue and metal taste your talking about well. Steroids can lead to osteo perosis, There is documented steroid induced osteo out there, It's an actual diagnosis. That's why I wonder if Pred is still the drug of choice. I had a friend in HS that balloned on Pred before she died and I know Lupus is a terrible disease.
As far as pain maagement, There are always plenty of options if you respond well to opiates and there isn't a way to fix it. Your dose is really what I would consider low of morphine, It's just not a very effective oral med and requires higher doses.
Different opiates hit different receptors , sometimes combinging opiates works well, using a dfferent break through med than your base med will hit a broader range of receptors. How satisfied are you with your pain management?
You do have to push yourself sometimes to get out and make smetype of life, I go through the cycles of mourning what I have lost and what has happened to my life. This certainly wasn't my plan, to be disabled at 33 and at 39 looking at another surgery after 3 have made me a wreck.
Healthy people make great asumptions about what life is like for a diabled person or somenme with CP or chronic illness. There is a genral exectation to get better and get over it. Most pepople do, but some of us don't.
This is probably a bad time for me to give advice, but if you want basic knowledge of pain management or your thinking abotut an Intrathecal morphine pump, which they can put alot of different meds besides morphine in. I can help and guide you a bit.
There isa great PM doc that's well published that explains alot about chronic pain and the basics of pain meds. Just cut and pste these into your browser
http://www.hosppract.com/issues/2000/07/brook.htm
part 2
http://www.hosppract.com/issues/2000/09/brook.htm
Was there anything specific you wanted to know about?
I'll check back later, Take care, Dave
lkavaloff
01-21-2005, 01:39 PM
Hey Dave,
Yes the med's I'm taking for my auto immune disease are the normal protocal here in the States and all over the world. My doc try to keep my off of predisone whenever we can, I havent taken any since the time it nearly killed me I have been too scared to take it even though there have been time that I should of taken it to try and get my joint over the bad inflamation all over my body. It very hard for my Rhemy to treat me because of the fact of all the other problems that I have as well especially Von Willebrands Disease, I cant take any anti-inflamatories which is a normal drug that they would prescribe to help with joint pain and inflamation but beacause I have Von Willebrands pretty bad he doesnt want to take any chances of me to start bleeding cause then of course that would cause a even bigger problem. There are some other drugs that I may be interested in trying like Methodextrate but because I'm still at a young age I will be 27 in Feb my Rhemy would like to just keep going with what I have been taking plus I will be getting married soon and I have been thinking and wanting to start to have family soon if thats even possiable, that itself brings so many problems to the table. In some ways I'm happy with my pain med's but other ways I'm not. I have been on the same dose now for over a year and I have gone a few times off for a week or so just to see how bad my pain is without it and I was a wreck to say the least. I'm sure if I had really any withdrawls, I have a belief that when you take nar's for pain and not to get high that your body doesnt go through the same withdrwals as a ddict would. I didnt really have shakes, nauea as others have mentioned I guess I'm lucky but the pain was so bad that I couldnt walk or get out of bed, and I was really emotional and mad, I just felt plain sick so I went back on it. Each day is different with my pain but one thing I will say is that since I have moved to FL its a lot better then living in Canada where is cold half of the year I'm a lot wrose off. But being FL doesnt take my pain all away it just makes a I would say instead of 10 out of 10 it bring its down to a 9 0r a 8 at good times. For me right now I'm thinking that I will probably will have to think about upping my MS contin I'm not exacty sure how much right now I take 75mg in the morning as well 2 prek's and my reg med's I also smoke a joint and then it normally take me about 2 hours before I start to feel a bit better and able to be a bit moblie and start to do things around the house. Right now I have switched from the 10mg Liquid Morphine to the the Perk's I usually swicth back and fourth every month or so just so I dont get too immune to it. But normally I'm taking bt pain med's every 2-4 hours. So I'm wonderiing if then I should up my MS contin so I'm not needing to take some many BT med's then??? The only problem is that I'm not going to be going back home to Canada from another 6 months, so I'm kind of on my own as to what I"m going to do with my pain med's, I can always call my Doc's to talk to them but its pretty much up to me what I want to take and how much, of course they dont want me to be taking anything at all but they also know that its not fair to me to be in so much pain tha I cant even live life. Yeah I would like to get help on getting my elbow fixed its getting really bad every year but no Doc in Canada that I have met have ever said that there is anything that they can do for me. I know that there a lot of good doc's here in the US for surgies but I'm just afraid that just like you that the surgies will not doing any good and that it might make it worse. I'm sorry to hear about your bad news about yourself and your back problems I dont know what I would do in your sutiation, all I can say is wow your one strong man....I will post more about what I think...I have to make a phone call right now...Thanks very much for posting back to me, it really means a ,lot to me to be able to talk to someone about this and my pain med's too cause all I have it my finace which he is great support but sometimes its very hard for him to understand about the pain because of course he doesnt want to see me in pain and he also would like to see me get off the nar's beacause he feels that my health might get even worse being on it...Plus he wants us to try and have a baby soon....Do you know much or heard anything about woman being on narc's if at all when they are pregnant cause I truly dont think that I could go 9 months without aything for the pain....
Thanks,
Lisa
Yes the med's I'm taking for my auto immune disease are the normal protocal here in the States and all over the world. My doc try to keep my off of predisone whenever we can, I havent taken any since the time it nearly killed me I have been too scared to take it even though there have been time that I should of taken it to try and get my joint over the bad inflamation all over my body. It very hard for my Rhemy to treat me because of the fact of all the other problems that I have as well especially Von Willebrands Disease, I cant take any anti-inflamatories which is a normal drug that they would prescribe to help with joint pain and inflamation but beacause I have Von Willebrands pretty bad he doesnt want to take any chances of me to start bleeding cause then of course that would cause a even bigger problem. There are some other drugs that I may be interested in trying like Methodextrate but because I'm still at a young age I will be 27 in Feb my Rhemy would like to just keep going with what I have been taking plus I will be getting married soon and I have been thinking and wanting to start to have family soon if thats even possiable, that itself brings so many problems to the table. In some ways I'm happy with my pain med's but other ways I'm not. I have been on the same dose now for over a year and I have gone a few times off for a week or so just to see how bad my pain is without it and I was a wreck to say the least. I'm sure if I had really any withdrawls, I have a belief that when you take nar's for pain and not to get high that your body doesnt go through the same withdrwals as a ddict would. I didnt really have shakes, nauea as others have mentioned I guess I'm lucky but the pain was so bad that I couldnt walk or get out of bed, and I was really emotional and mad, I just felt plain sick so I went back on it. Each day is different with my pain but one thing I will say is that since I have moved to FL its a lot better then living in Canada where is cold half of the year I'm a lot wrose off. But being FL doesnt take my pain all away it just makes a I would say instead of 10 out of 10 it bring its down to a 9 0r a 8 at good times. For me right now I'm thinking that I will probably will have to think about upping my MS contin I'm not exacty sure how much right now I take 75mg in the morning as well 2 prek's and my reg med's I also smoke a joint and then it normally take me about 2 hours before I start to feel a bit better and able to be a bit moblie and start to do things around the house. Right now I have switched from the 10mg Liquid Morphine to the the Perk's I usually swicth back and fourth every month or so just so I dont get too immune to it. But normally I'm taking bt pain med's every 2-4 hours. So I'm wonderiing if then I should up my MS contin so I'm not needing to take some many BT med's then??? The only problem is that I'm not going to be going back home to Canada from another 6 months, so I'm kind of on my own as to what I"m going to do with my pain med's, I can always call my Doc's to talk to them but its pretty much up to me what I want to take and how much, of course they dont want me to be taking anything at all but they also know that its not fair to me to be in so much pain tha I cant even live life. Yeah I would like to get help on getting my elbow fixed its getting really bad every year but no Doc in Canada that I have met have ever said that there is anything that they can do for me. I know that there a lot of good doc's here in the US for surgies but I'm just afraid that just like you that the surgies will not doing any good and that it might make it worse. I'm sorry to hear about your bad news about yourself and your back problems I dont know what I would do in your sutiation, all I can say is wow your one strong man....I will post more about what I think...I have to make a phone call right now...Thanks very much for posting back to me, it really means a ,lot to me to be able to talk to someone about this and my pain med's too cause all I have it my finace which he is great support but sometimes its very hard for him to understand about the pain because of course he doesnt want to see me in pain and he also would like to see me get off the nar's beacause he feels that my health might get even worse being on it...Plus he wants us to try and have a baby soon....Do you know much or heard anything about woman being on narc's if at all when they are pregnant cause I truly dont think that I could go 9 months without aything for the pain....
Thanks,
Lisa
Shoreline
01-21-2005, 02:37 PM
Hey Lisa, Actually, I have met a few women that are CP patients that have gotten pregnant and had healthy children while on narcs. I can't recall off the top my had which med but obviously some are safer than others. The FDA requires the manufacturer to rate the different opiates on a rating system as to what effect they have on unborn children. It's a catagory system like A-B -c and more info is available in the full prescribing info on each med. Some are safer than others and your dose makes a differnce too. Like I said, your not on a high dose, more what I would call moderate, considering your conditions.
I was taking 600mgs of Kadian long acting morphine and using 60 mgs of oxycodone for BT pain a couple times as day when I'm flared up. But needing BT meds every few hours definitely means your base dose of long acting meds is too low.
There is certainly an advatage to the intrathecal pump as far as being clear headed and less side effects. I had to switch to meth for the last 20 months due to no prescription beni's and the morph would have cst 700-1400 a month depending on if I went generic which is much shorter acting than Kadian, there isn't a genric 24 hour morphine. Methadone just seemed to take the color out of life and I was glad to get off it even if it took a pump to do it. Medicare will pay for the pump and the morphine in it, but not oral morphine.
You can check out the pumps at the Medtronics web site, just search for medtronics or search for intrathecal morphine pumps. THe meds are much more potent and efficient through a pump, where I was taking 600 mgs orally I get 12 mgs through the pump and much better relief without all the side effects. When meds are delivered directly to your spine they don't run through your entire body "systemically" and the dose is much lower. You don't feel the cognative impairment although with orals you do get used to it, it still has more of an effect on personality and labido than I cared for.
So a pump may be worth investigating. It took me 2 years and 2 trials of real investigation and consideration before going ahead with it. It's not a decision you want to rush into when there are other options, It just depends on how the meds make you feel and what your looking for as far as functiion. It's just a tool, not a cure all that masks all pain. Regardless of what the pump was set on, when my spine shifts, I feel it like an electric jolt through my body. :eek:
Take care, Dave
I was taking 600mgs of Kadian long acting morphine and using 60 mgs of oxycodone for BT pain a couple times as day when I'm flared up. But needing BT meds every few hours definitely means your base dose of long acting meds is too low.
There is certainly an advatage to the intrathecal pump as far as being clear headed and less side effects. I had to switch to meth for the last 20 months due to no prescription beni's and the morph would have cst 700-1400 a month depending on if I went generic which is much shorter acting than Kadian, there isn't a genric 24 hour morphine. Methadone just seemed to take the color out of life and I was glad to get off it even if it took a pump to do it. Medicare will pay for the pump and the morphine in it, but not oral morphine.
You can check out the pumps at the Medtronics web site, just search for medtronics or search for intrathecal morphine pumps. THe meds are much more potent and efficient through a pump, where I was taking 600 mgs orally I get 12 mgs through the pump and much better relief without all the side effects. When meds are delivered directly to your spine they don't run through your entire body "systemically" and the dose is much lower. You don't feel the cognative impairment although with orals you do get used to it, it still has more of an effect on personality and labido than I cared for.
So a pump may be worth investigating. It took me 2 years and 2 trials of real investigation and consideration before going ahead with it. It's not a decision you want to rush into when there are other options, It just depends on how the meds make you feel and what your looking for as far as functiion. It's just a tool, not a cure all that masks all pain. Regardless of what the pump was set on, when my spine shifts, I feel it like an electric jolt through my body. :eek:
Take care, Dave
lkavaloff
01-21-2005, 03:34 PM
Hey Dave,
Well I will for sure ask about upping my base pain med's....I guess probably try an extra 15mg in the morning or do you think 30mg? I get 15mg pills as well as 30mg? and then I guess up it the same in the evening time...I normally take my second dose around 5pm so I it doesnt normally last me 12 hours. I take 2 different type of sleeping pills in the night time to sleep and I have been for over 3 years, sometimes I am able to sleep 4-6 hours without getting up to get bt med's other times I hardly sleep at all. I find now that I dont really get any bad affects with my med's cause I"m so use to taking them that I really dont notice much anything as like a high, I mean of course I feel a bit of a high anyone would, but I more feel happier and have much more engery once they start to work and I guess I just feel more like my normal self. The only really bad side effects that I get from it is the constipcation and that is no fun, I have to take laxitives everyday and i also drink and eat prunes everyday or else I would be in a lot of pain with my poor tummy. I totally going to look into this pump your talking about. I would like to know a lot more about it and how it works and what not. Thats very interesting that you have heard of woman taking narc's when they are pregnant, I'm so going to look more into that, because I know for a fact that I couldnt go with out especailly when I'm pregnant all that extra weight. That makes me happy to know that there might be some hope with that because I'm afraid that I might not be able to have kids because of that problem and me and ficance would have to go another route. Also I was wondering how you and your wife are with sex? I have very little to no sex drive at all and i feel really bad for my ficance because he has a very high sex drive. We have a lot of problems with that, like 1st off because of my joint pain and we kind of have to plan around my pain which can take the fun out of sex cause its almost like we have to plan it to a tee, I have to take pain med's so my joints dont hurt so much, 2nd because I have Sjogrens Syndrome, I have very dry eyes, mouth and vaginally, so I exp a lot of pain sometimes with sex and have to use a lot of lube. I also have to use this cream called Premalin(its old lady cream that they use when you go to menopause) 2 a week because I'm so dry down there and it really hurts and burns even when I dont have sex. Also I tend to bleed alot after sex or well all the time down there due to my Von Willebrands disease. So sometimes I feel if its not one thing its another and I'm only 26 what is it going to be like in 10 years with sex. I do enjoy it sometimes but sometimes I couldnt be bother at all because of all these issues but then I start to feel relly bad and sad because I love the man I'm with some much and hes always there for me and I do want to show him how much I love him in that special kind of way that you can only do when you make love. I dont know if I"m making any sense with this at all. I was hoping if you or anyone can shed some light on how there sex life is and how they deal with this with there partners. I will look forward to your nexted post.
Lisa
Well I will for sure ask about upping my base pain med's....I guess probably try an extra 15mg in the morning or do you think 30mg? I get 15mg pills as well as 30mg? and then I guess up it the same in the evening time...I normally take my second dose around 5pm so I it doesnt normally last me 12 hours. I take 2 different type of sleeping pills in the night time to sleep and I have been for over 3 years, sometimes I am able to sleep 4-6 hours without getting up to get bt med's other times I hardly sleep at all. I find now that I dont really get any bad affects with my med's cause I"m so use to taking them that I really dont notice much anything as like a high, I mean of course I feel a bit of a high anyone would, but I more feel happier and have much more engery once they start to work and I guess I just feel more like my normal self. The only really bad side effects that I get from it is the constipcation and that is no fun, I have to take laxitives everyday and i also drink and eat prunes everyday or else I would be in a lot of pain with my poor tummy. I totally going to look into this pump your talking about. I would like to know a lot more about it and how it works and what not. Thats very interesting that you have heard of woman taking narc's when they are pregnant, I'm so going to look more into that, because I know for a fact that I couldnt go with out especailly when I'm pregnant all that extra weight. That makes me happy to know that there might be some hope with that because I'm afraid that I might not be able to have kids because of that problem and me and ficance would have to go another route. Also I was wondering how you and your wife are with sex? I have very little to no sex drive at all and i feel really bad for my ficance because he has a very high sex drive. We have a lot of problems with that, like 1st off because of my joint pain and we kind of have to plan around my pain which can take the fun out of sex cause its almost like we have to plan it to a tee, I have to take pain med's so my joints dont hurt so much, 2nd because I have Sjogrens Syndrome, I have very dry eyes, mouth and vaginally, so I exp a lot of pain sometimes with sex and have to use a lot of lube. I also have to use this cream called Premalin(its old lady cream that they use when you go to menopause) 2 a week because I'm so dry down there and it really hurts and burns even when I dont have sex. Also I tend to bleed alot after sex or well all the time down there due to my Von Willebrands disease. So sometimes I feel if its not one thing its another and I'm only 26 what is it going to be like in 10 years with sex. I do enjoy it sometimes but sometimes I couldnt be bother at all because of all these issues but then I start to feel relly bad and sad because I love the man I'm with some much and hes always there for me and I do want to show him how much I love him in that special kind of way that you can only do when you make love. I dont know if I"m making any sense with this at all. I was hoping if you or anyone can shed some light on how there sex life is and how they deal with this with there partners. I will look forward to your nexted post.
Lisa
twisten
01-21-2005, 08:37 PM
Boy, you've sure been through a lot for your age. Are you 26 or 27? I thought I noticed 27 but then I read 26 so I'm not sure. I live in Alberta Canada so I totally understand how your pain is helped with Florida weather. If I could afford it, hubby and I would be down there every winter!! How do you get your prescriptions down there? Do the doctors phone them in for you or do you have to come back every month??
lkavaloff
01-24-2005, 12:19 PM
Hello Everyone,
I'm 26 and I will be 27 on Feb 11, so my b-day will be here in the next few weeks yay!!! It's so nice to hear from someone else that lives in Alberta Canada, I lived in Calgary from the age of 14-25. I met my finace on the internet and we talked for about 9 months and then my Sweetheart came down to Calgary so we could finally met in person, I took him to Banff to see our wonderful mountains that we have right outside our front doors so to speak hehehe. Then I moved down here, to Tampa FL in Aug of 2003 and I have been coming back to Calgary every 6 months to see my doctors and to get my refills on all my med's and to just make sure that everything is going ok with my body. Yes I for sure say that I have been through lots in my life which you can look in so many different ways good or bad but I always try to look in it in a postive way and that there are reasons why everything happens in life, I mat not know totally why right now but God always has great big plans for all of us. Where in Alberta do you live Twisten? What type of illness do you have? As for my med's this is what I do for that to get it down here...my family who I must say is just awesome normally will give me refills on all my med's for 6 months and if I run out my pharmacy(which they are awesome as well to me) that I use is in the same buliding and they just bring up the RX forms and he just sign's them and then they deliver it to my cousin's house and I get my cousin to FedEx to me. It's not that easy, I have to fill out a lot of forms that states what med's are being sent,how many in each bottle, the manufactor's name and address and what they are used for. I also have to provide copises of the RX's for all the Narcotic's and the recept to show that they where bought and paid for from a legitmate pharmacy. I have also give copies of my birth certificate, picture id and a copy of my passport to show to Customs and the FDA that I am a Canadian Cizten cause they wont let drug's be shipped from Canada if I wasnt a citizen of Canada because of the laws that they have here in the US of buying cheaper med's from Canada which I think is so dumb but here in the States healthcare is such a big $$$ maker compared to Canada. Trust me it's not as easy as it sounds, if I'm missing one piece of information in all the paperwork that needs to be included my med's will get stuck so to speak and it wont get delivered to me and could possiably get seized for good, so far that hasnt happend yet but the 1st time I did it when I 1st got here in Aug of 2003, I used UPS(they suck sorry for sending med's) it took me 3 weeks of calling and calling for me fianlly able to get them released from Customs but at a cost to me of haiving it on my record with the US goverment that I had tried to send Narcotic's through UPS and didnt have the proper doc's which I did have but the dumb UPS guy who picked them up put all the paperwork inside of the papckage instead of on the outside of the papckage where they can look and at everything to make sure that its all real and legit and legal. So now I use FedEx they are a lot better but I still sometimes have a little problems with them but I have done it now so many times I know everything that needs to be in the package for it able to make it to me, but for the last 4 months for some reason I'm not too sure how or why but all of my id's seem to get lost when it makes it to Customs and FDA so it get's held but luckly I have found someone that works in the brokerage firm in FedEx that is able to them go and give them copies of my id cause she keeps a copy of all 3 of them in here office just in case it get's stuck, so she goes and gives it to them and they release it to them and then it makes it to me the nexted day. Its a pretty compicated process but hey that's what I got to do to be able to get my med's then so be it. So that's pretty much how that works in a nut shell. I wish that all the ppl that suffer from chronic pain in Alberta where able to live here in sunny FL it really does help a lot, cause I know for myself I can just feel that damn coldness and dry air right in all my bones and I dont feel that as much being down here. Oh I still have a lot of pain but at least I dont have that achy feeling deep in my bones from the long cold dry winters we have in Alberta. I hope that we can talk some more Twisten and Shoreline and anyone else that would like to talk about our pains or anything for that matter. I'm here always during the day and I would love to chat and get to know more ppl with the same problems as me. Talk to you soon.
Lisa
I'm 26 and I will be 27 on Feb 11, so my b-day will be here in the next few weeks yay!!! It's so nice to hear from someone else that lives in Alberta Canada, I lived in Calgary from the age of 14-25. I met my finace on the internet and we talked for about 9 months and then my Sweetheart came down to Calgary so we could finally met in person, I took him to Banff to see our wonderful mountains that we have right outside our front doors so to speak hehehe. Then I moved down here, to Tampa FL in Aug of 2003 and I have been coming back to Calgary every 6 months to see my doctors and to get my refills on all my med's and to just make sure that everything is going ok with my body. Yes I for sure say that I have been through lots in my life which you can look in so many different ways good or bad but I always try to look in it in a postive way and that there are reasons why everything happens in life, I mat not know totally why right now but God always has great big plans for all of us. Where in Alberta do you live Twisten? What type of illness do you have? As for my med's this is what I do for that to get it down here...my family who I must say is just awesome normally will give me refills on all my med's for 6 months and if I run out my pharmacy(which they are awesome as well to me) that I use is in the same buliding and they just bring up the RX forms and he just sign's them and then they deliver it to my cousin's house and I get my cousin to FedEx to me. It's not that easy, I have to fill out a lot of forms that states what med's are being sent,how many in each bottle, the manufactor's name and address and what they are used for. I also have to provide copises of the RX's for all the Narcotic's and the recept to show that they where bought and paid for from a legitmate pharmacy. I have also give copies of my birth certificate, picture id and a copy of my passport to show to Customs and the FDA that I am a Canadian Cizten cause they wont let drug's be shipped from Canada if I wasnt a citizen of Canada because of the laws that they have here in the US of buying cheaper med's from Canada which I think is so dumb but here in the States healthcare is such a big $$$ maker compared to Canada. Trust me it's not as easy as it sounds, if I'm missing one piece of information in all the paperwork that needs to be included my med's will get stuck so to speak and it wont get delivered to me and could possiably get seized for good, so far that hasnt happend yet but the 1st time I did it when I 1st got here in Aug of 2003, I used UPS(they suck sorry for sending med's) it took me 3 weeks of calling and calling for me fianlly able to get them released from Customs but at a cost to me of haiving it on my record with the US goverment that I had tried to send Narcotic's through UPS and didnt have the proper doc's which I did have but the dumb UPS guy who picked them up put all the paperwork inside of the papckage instead of on the outside of the papckage where they can look and at everything to make sure that its all real and legit and legal. So now I use FedEx they are a lot better but I still sometimes have a little problems with them but I have done it now so many times I know everything that needs to be in the package for it able to make it to me, but for the last 4 months for some reason I'm not too sure how or why but all of my id's seem to get lost when it makes it to Customs and FDA so it get's held but luckly I have found someone that works in the brokerage firm in FedEx that is able to them go and give them copies of my id cause she keeps a copy of all 3 of them in here office just in case it get's stuck, so she goes and gives it to them and they release it to them and then it makes it to me the nexted day. Its a pretty compicated process but hey that's what I got to do to be able to get my med's then so be it. So that's pretty much how that works in a nut shell. I wish that all the ppl that suffer from chronic pain in Alberta where able to live here in sunny FL it really does help a lot, cause I know for myself I can just feel that damn coldness and dry air right in all my bones and I dont feel that as much being down here. Oh I still have a lot of pain but at least I dont have that achy feeling deep in my bones from the long cold dry winters we have in Alberta. I hope that we can talk some more Twisten and Shoreline and anyone else that would like to talk about our pains or anything for that matter. I'm here always during the day and I would love to chat and get to know more ppl with the same problems as me. Talk to you soon.
Lisa
twisten
01-24-2005, 01:44 PM
Boy that is a lot of hassle for you to get the meds there. I thought here in Canada we could only get opiate meds 1 month at a time with no refills? How do you get by that or is it not true? That is what my doc told me and why I have to go in to see her once every month. I live near Lloydminster. When I was younger I used to go to Calgary a lot during the summer to visit my grandparents but they are no longer alive. I think its neat you met your fiance online. A girl I worked with met her now hubby online too and he was from England. He is now living here with her in Canada and they seem very happy. Another friend of mine though had a bad experience with meeting, what she thought, was her new love online. He lived in LA or Las Vegas (can't remember which now) and flew to Edmonton so they could meet for the first time but it turned out he was married. If you look at the bottom of all my posts it shows all my "ailments". Recently osteopenia/osteoporosis have been added to the mix too. I hope to hear more from you, its always nice to talk to fellow Canadians on here.
lkavaloff
01-24-2005, 02:23 PM
Hey just a quick post cause I'm going to eat lunch here, but I will post more after I get back from lunch. I thought too the same thing about only being able to only give one month of Narc's at a time but i think the only reason my Doc is able to do it is because the Pharmacy i use it the one that's in his office and I guess because he knows the owner very well and sends a lot of bizz his way he might have worked something out with him on a personal level. The 1st time I was given MS Contin ane Liquid Morphine I was in the hospital and I"m lucky cause my family doc has rights at the hospital so he was the one that was treating me in there and he wrote a prescription for 250 pills of MS Contin 30, 250 pills of MS Contin 15mg and 3 full bottles of the Liquid Morphine but he did tell me that I must keep it under lock and key and if it was to be stolen I would be legally responsibale for it in a court of law, so I was a little worried about it in fact once I got out of the hospital and I was in there for a month and a half on 7.5mg of Morphine through IV for the whole time and that only brought the pain down to a level 8. So when he was getting ready to discharge me he got a pain med's specialist doctor to come in and talk to me about different pain med's and he usally only dealt with ppl that where dieing and he was the one that thought that MS Contin and the Liquid Morphine was the only thing that could compare to the 7.5mg of Morphine through the IV, so they had me try it out for a week in the hospital to make sure that it would work for me and I found that it was pretty close not as good as the IV but pretty darn close for being oral med's and all, so that's what they sent me home with. But as I was saying before I was so nervous to take it at home that the 1st day and half I didnt take any of the med's at all until I couldnt take it anymore and I started to take it cause the pain was so bad, and then I started to feel ok taking it and that I would be safe to take it on my own...I will post more in about an hour...Talk to you soon...
Lisa
Why dont you tell me a little more about your health stuff and what you take for pain med's. Yes I can say its always nice to talk to someone from back home especially since we both have chronic pain issues.
Lisa
Why dont you tell me a little more about your health stuff and what you take for pain med's. Yes I can say its always nice to talk to someone from back home especially since we both have chronic pain issues.
lkavaloff
01-26-2005, 10:16 AM
I just wanted to bump my post up...I hope to get some support and responses...
Lisa
Lisa
twisten
01-26-2005, 01:35 PM
Morning Lisa (at least its morning right now where I am lol). I haven't forgot about you just been busy. The pain meds I'm on right now are mscontin 30 mg in the morning and 60 at night. I have10 mg of oxyir for bt and can take 2 sometimes 3 a day if needed and I take 100 mg of elavil at night. I have to go out right now but I'll try to post more of "my story" later tonite. Hope you have a great day!!