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  • Help Me! Been on meds for years and they want to give me more meds!!

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    Old 07-21-2013, 05:34 PM   #1
    luvinmusiq
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    Help Me! Been on meds for years and they want to give me more meds!!

    Hey to my board family! It has been a long time since I have been on here. I had been going through a lot but I am glad to be back and I need you guys more than ever. Usually I am the one giving the advice but right now I am not sure just what to do. I am saying in advance this is a long one, so thanks for taking the time to read.... As some of you may know, I was diagnosed with an auto immune disease over 15 years ago. I also have other major health issues. I have been under the care of a PM doctor for years. I am on very strong meds for long acting and also breakthrough. A few months ago, I started having very bad pain with my rt hip. After trying different injections, therapy, etc nothing was changing. As a matter of fact, it felt like it was getting worst. We get a xray and the doctors thought it could be AVN (avascular narcosis). So after a MRI it was confirmed that I do have AVN of the right hip. I need to have a THR (total hip replacement). So, I go to the ortho surgeon and we talked for over an hour just about how "he" doesn't want to do it because of my age. I am 31. He tells me how he is saying because of my age I would need 2 more major surgeries in my lifetime. And if I was 40 he would have no hesitation. Yes, this is my first time with this dr but I was just blown by the things he was saying. Months ago my pain dr prescribe me a walker due to the fact I can "barely" walk. Stairs, is hardly possible. I was crawling on all fours trying to go up a few stairs. I mean, with my illness alone I am limited to a lot but now I can't walk! And the ortho tells me that there is nothing that can be done but replacement at this point but he cant see doing this on someone my age. Then when I go back to my pain doctor, he tells me that he talked with him and basically told my pain doctor that he needs to prescribe more meds to make it as tolerable as possible for as long as possible. I was speechless, you are telling me I too young for a replacement but I am not too young to prescribe mounds of pain meds. He knows what I am already taking and to actually suggests to add more is not okay with me. The pain meds I take are very strong and I am on high doses and the pain I have been in for months with my hip, I can't even think of anything that will make this "tolerable". After talking with my pain dr, I have an appt with a different ortho this week. I am hoping for a different outcome. Is it just me, I am not sure if maybe I am not seeing this the right way. My thing is, yes 31 is young. But its the cards that I was dealt. Younger people has had to endure worst. Then with the AVN, the only thing that can happen is that it gets worst and become even more painful. To me, I just feel like more meds will not be helpful. So, am I suppose to do this until I get 40? Or until my hips collapse? If you are not sure what AVN is, bottom line is that my right hip bone is DEAD!! As we all know when anything is dead, that's it. There is no coming back. Please let me know what you think. Do you think the ortho doctor is right? I have to take pain meds because I don't have a choice, I know you all are in the same situations. but with this, I have a solution. I know it sound real selfish but I am not thinking about the other surgeries that I will have in my lifetime that he is talking about. Now you know how long I am going to live???? I am worried about the here and now. And right now my hip bone is dead. Once again, sorry for blabbing, its hard to explain but if you have any thoughts, I am all ears.
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    Old 07-21-2013, 06:37 PM   #2
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    hi Luvinmusiq,

    Well, first thing you have to ask yourself-how well is the pain being managed now?

    May I know which La you are on? I just remember getting to a point where I was willing to do anything to make my life more functional-I was a little stubborn, but I do know there is no other known cure for chronic pain, and we were willing, and we did try anything that was suggested to manage horrific pain that never ends.

    If you are getting at least 40-50% relief that is very good for a CPP. And I do realize you already know this. If you are getting by with the current dose, or maybe it needs some type of adjustment-but you had to know you were in it for the long haul-don't be afraid of the medicine now, I am sure that it just means you will probably need an increase r change as time goes on, but this is not new news in CP. I realize it can be a lot to swallow when something new comes up in our health affecting the pain-but you must have faith-you have come a long way and you musn't let this news get the best of you.

    If you trust your pain Specialist, then you have a lot right there. I am sure they don't intend to drug you to the point that you are drooling all over yourself-that is not pain management. The adjustments should come depending on the pain and what you are able to function with.

    I can tell you that with AVN they will monitor it's progression and the pain and your activities of daily life. I worked in Orthopaedics for many years, and did see a few patients around 35 get Total Hip Arthroplasty for AVN when the benefit of having the surgery out weighed the risk-its going to be a wait and see, and get another opinion.

    You have all of the CPP here that will support and listen to you, because we get it.

    I know you are going through a hard time, trust it will get better.
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    Old 07-21-2013, 10:26 PM   #3
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    Hi there, don't really have any advise for you about the medication, I would say to take only what you really need. What i do know about is AVN, I have Severe AVN in BOTH of my feet/ankles. I've had 6 surgeries within the last 2 years. I'm sporting 10 screws & 4 plates in one foot and I think 11 and 4 in the other. I also have a implanted bone stimulator in my leg with wires going into my foot, he's hoping to get the bones to fuse after the surgery. I'm still on zero weight bearing since October. By the way, this started in my late 40's, 2 years ago. It's been absolute hell. I know exactly how you feel about literally not being able to walk. Its good that you're getting a 2nd opinion. If you don't feel like you need the meds, don't take them but if you can have more of a life taking them, I would. Sorry this turned into a story about me, just wanted to tell you about my fight with AVN. Hang in there

     
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    Old 07-22-2013, 07:16 PM   #4
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    I don't have any relevant experience to share, just my firm belief that treatment (be it medication, surgery, etc.) should be based on need not age (exempting very young children perhaps). If, g-d forbid, your hip broke, I doubt any conscientious doctor would suggest you just lie in immobile in a hospital bed till you hit 40.

    If I were you, I would fight like crazy for a THR. And as for the doctor's comment that you'll need two more surgeries - that's speculation. Granted it is hopefully based on his experience, but there's no finite way to tell how long a replacement will last. Newer model replacements have long lifespans, and while you will likely need it replaced, that time could be far into the future.

     
    Old 07-24-2013, 04:44 AM   #5
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    Thanks for everyone messages to me. They were all helpful. I don't remember too many questions asked but I do remember BB07 asking a few. You don't have enough time to sit and listen to all the meds that I am currently taking for all my health issues. But I figured you were only interested in the pain meds. I have been on this regiment for over a year now. I have been on a lot in the last 15 years. Right now I take Fentanyl Patches 75mg change patch ever 48 hours instead of 72. For breakthrough, I take Percocet 10/325 every 4 to 6 hours as need.(max 6 a day). I also take Ambien 12.5 at bedtime.Now that is what its been for a over a year, almost 2 years. It helps with my overall pain with the health issues I had before. Lupus can be very very painful. Days where I couldn't move my joints and had to be rushed to hospital only to find out that my lupus are attacking my organs and trying to shut down. So a few months ago I am telling my Pain dr that my leg hurts really bad. when he would ask where I would tell him around my groin but it also travels down my leg. I told him my meds were not working on my hip at all. And I mean my hip pain feels as if I haven't took anything. So we started doing PT on it and injections. For months I was in so much pain with this hip. All my mobility is gone. I can tell everyone I trust me pain management doctor,my primary, and a few of my specialist, oncologist, gastroenterologist, cardiologist. Now I have a few I respect their opinions but I would do my own homework before going off with what they have to say. So after the PMP did quite a few injections and seen I was still in a lot of pain, he order an xray of my right hip. After that came back he told me he wanted me to see a ortho surgeon because it looks like I have AVN in the right hip and I need to see a ortho so they can confirm by doing further testing. I go to a ortho and get the MRI done. And next appointment with the ortho was confirming that it is indeed AVN. He explained it to me and told me that this just going to get worst. Now my ball is starting to collapse which will make the pain even more painful.but that's when my age came up. Needless to say My Pain doctor is even upset with the ortho. I just keep thinking about what pain meds would I need to take to even make the hip pain tolerable. I think I take some strong meds. Its like, where do I go from here with the meds. And I do understand what they are saying about age, I get it. But I need that doctor to feel the agonizing pain I am going through. Hate going to grocery stores because I have to use the remote control seats to shop. My PMP had to prescribe me a cane over a month ago. Now After a month on the cane, now the pain is getting worst. I lay down and it hurts. While driving, I can't press down on the petal because of the hip. I tried to hurry up and break the other day and I almost didn't stop cause I couldn't press hard on the break. They have giving me a handicap parking plate, and now they have prescribed me crutches because they want me to completely stay off the hip. Now how am I suppose to go on like this. I can't worry about what may happen in 40 years from now, I am focused on the here and now. Well today I go see a new ortho surgeon and I will see what they have to say. Thanks guys for all your support. I will let you know how my appointment with this new ortho goes. Wish me luck
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    Power Port implant 2010
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    Old 07-24-2013, 07:55 AM   #6
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    Sending you well wishes for a good appointment today! Let us know how it goes.

     
    Old 07-24-2013, 02:17 PM   #7
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    Dear luvin music, When i hear this "story" from you now it brings to my remembrance the hospitalizations & problems that you have had with the lupus & other problems & i cant understand why the ortho is not considering your general health as being a surgical candidate now as opposed to nine years in the future what will the lupus look like then? The same, better unless im wrong couldnt or wouldnt it be worse possibly? And i cant recall the other issues now but arent they progressive too? What are the chances that these diseases could make you more at risk as far as major surgery in the future, is anyone considering this? Maybe this is what the ortho wants to wait for because if one surgery led to another then another maybe its better to just leave it intact until the situation is so great it has to be done regardless of risk? When i was told if i had surgery for arachnoiditis it couldnt be done until it was an emergency because it could make the pain greater & i didnt understand how could it be worse but the NS's assured me it can be worse than now & taking that risk of surgery wouldnt be taken unless it was life or death.

    Last edited by gmak; 07-24-2013 at 02:28 PM.

     
    Old 07-24-2013, 03:37 PM   #8
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    I sure hope you get help. We really have to advocate for ourselves sometimes and insist that life is not tolerable. My issues are nowhere near as painful as yours, but had a similar story. I have had several shoukder surgeries, and ended up with a procedure, reverse replacement, that is only indicated for patients over 70. The prosthesis will not last, and since it was my third revision, I will be lucky to get 3-5 years before it fails. That is why is was only approved by the FDA for the elderly, who will not outlive it. Well, I am 57. I was in serious pain, and could not move my right arm. So after getting several opinions, the reverse was done. With AVN you will need that replacement sooner rather than later. Best wishes to you.

     
    Old 07-24-2013, 04:01 PM   #9
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    Quote:
    Originally Posted by luvinmusiq View Post
    Thanks for everyone messages to me. They were all helpful. I don't remember too many questions asked but I do remember BB07 asking a few. You don't have enough time to sit and listen to all the meds that I am currently taking for all my health issues. But I figured you were only interested in the pain meds. I have been on this regiment for over a year now. I have been on a lot in the last 15 years. Right now I take Fentanyl Patches 75mg change patch ever 48 hours instead of 72. For breakthrough, I take Percocet 10/325 every 4 to 6 hours as need.(max 6 a day). I also take Ambien 12.5 at bedtime.Now that is what its been for a over a year, almost 2 years. It helps with my overall pain with the health issues I had before. Lupus can be very very painful. Days where I couldn't move my joints and had to be rushed to hospital only to find out that my lupus are attacking my organs and trying to shut down. So a few months ago I am telling my Pain dr that my leg hurts really bad. when he would ask where I would tell him around my groin but it also travels down my leg. I told him my meds were not working on my hip at all. And I mean my hip pain feels as if I haven't took anything. So we started doing PT on it and injections. For months I was in so much pain with this hip. All my mobility is gone. I can tell everyone I trust me pain management doctor,my primary, and a few of my specialist, oncologist, gastroenterologist, cardiologist. Now I have a few I respect their opinions but I would do my own homework before going off with what they have to say. So after the PMP did quite a few injections and seen I was still in a lot of pain, he order an xray of my right hip. After that came back he told me he wanted me to see a ortho surgeon because it looks like I have AVN in the right hip and I need to see a ortho so they can confirm by doing further testing. I go to a ortho and get the MRI done. And next appointment with the ortho was confirming that it is indeed AVN. He explained it to me and told me that this just going to get worst. Now my ball is starting to collapse which will make the pain even more painful.but that's when my age came up. Needless to say My Pain doctor is even upset with the ortho. I just keep thinking about what pain meds would I need to take to even make the hip pain tolerable. I think I take some strong meds. Its like, where do I go from here with the meds. And I do understand what they are saying about age, I get it. But I need that doctor to feel the agonizing pain I am going through. Hate going to grocery stores because I have to use the remote control seats to shop. My PMP had to prescribe me a cane over a month ago. Now After a month on the cane, now the pain is getting worst. I lay down and it hurts. While driving, I can't press down on the petal because of the hip. I tried to hurry up and break the other day and I almost didn't stop cause I couldn't press hard on the break. They have giving me a handicap parking plate, and now they have prescribed me crutches because they want me to completely stay off the hip. Now how am I suppose to go on like this. I can't worry about what may happen in 40 years from now, I am focused on the here and now. Well today I go see a new ortho surgeon and I will see what they have to say. Thanks guys for all your support. I will let you know how my appointment with this new ortho goes. Wish me luck
    My eyes hurt,but Good Luck

     
    Old 08-01-2013, 06:45 AM   #10
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    Hello everyone, and sorry it has took me so long to get on here. It has been a busy week. Well I went to see the new ortho and after looking at all my test results, xray, and mri's, he ordered a xray to check the ball in the hip to see if it is starting to collapse. After everything done he did diagnose me with AVN and with everything going on with my health, he knows that this is our only action is a total hip replacement. So as of right now, I am waiting for the surgical dept of central scheduling to call me with a date. We are trying for the next two weeks. Then just a day ago, I had to see my primary doctor so that they can give me pre op clearance. Now I have another road block, my blood pressure was too high and my ekg came back abnormal. So they wouldn't give me the clearance until my blood pressure goes down so they increased my meds and I have a follow up next Thursday. Yes, I am getting really impatient. I am right at the finish line and now people are holding me back so I won't move so that I can complete this. Well I am glad that we all are on the same thing but im just so ready to get this. The pain of my hip and the way it has crippled me from doing nothing is so frustrating but I am thinking positive that this will be a new chapter in my life. I have an appointment with my pain doctor this week also and I do what to ask him about my pain meds. because of the AVN is worst and the ball is collapsing, I have been in constant pain. So I want to see if he would increase ONE of my pain meds. I really hate asking because my whole thing is I did not want to go up on my meds unless Its a emergency. I think this is. WhAT DO YOU GUYS THINK? Should I ask for an increase in either my Percocet or fentanyl? And do you think he will okay it? Haven't changed me meds in a very long time, so I am really nervous about bringing it up and asking for it. Hope you all are having a good day.
    __________________
    Dx Lupus (SLE) 1996
    Dx Tumor (pituitary) 2010
    Dx Pancreatitis 2011
    Pancreatic Stent
    Osteoarthritis
    Stroke
    Leukopenia
    Migraines
    Power Port implant 2010
    Total Right Hip Replacement

     
    Old 08-01-2013, 07:44 PM   #11
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    I would discuss your increase in pain, but not specifically ask for an increase in meds. Explain what the pain is preventing you from doing. Be clear that you are suffering and that some sort of change needs to be made, but I'd leave the specifics up to your doctor. I hope you get the clearance for surgery soon! Maybe getting your pain down will help your blood pressure too? Best wishes.
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    Old 08-02-2013, 08:00 AM   #12
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    Hi luvin music & to everyone, I dont think that you will have to ask if the surgery is performed soon all of your meds may be changed or at least added to ehen you are a surgical patient. My gosh im so sorry that this has happened to you because you were already dealing with enough! Hope that the surgery can fix this problem & adding you to my prayers because to me, imho, a THR is a big surgery! Let is know when & the updates.

     
    Old 08-14-2013, 06:37 PM   #13
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    I read your post while researching my own situation, and I joined the forum ONLY to reply to your post.

    Cuz I'm tellin you this: that ortho is worthless. Get a second AND a third opinion from an ortho with a lot of experience.

    I had my THR at the tender age of 32 :::::GASP::::::: right? Doc said I'd have to have a revision in 10 years and then another and maybe more depending on how long I live.

    I'm now bracing myself for the first revision they warned me about. I'm scared, really scared, and very alone because its just me and my 21 year old kiddo at home. So I turned to the web in hopes of finding others with my same diseased state.

    My "disease" is a congenitally dislocated hip. Went through the treatments that they had in the 60's, then at age 11 I had a greater trochanteric reduction, screws put in, and surgery on the OTHER leg to even out my leg lengths as I grew.

    Fast forward to what was a dull ache I'd gotten used to (chronic pain ever since THR) to excruciating nonstop pain requiring alarming doses of oxycontin and other breakthru drugs. There was NO QUESTION that I was getting a THR, my age be damned! I had developed avascular necrosis.

    I'll share a trick with you to ease pain. I created a traction device at home because pain would lessen from having my hip stretched in traction. I used 3 lb. bags of sugar shoved into pantyhose and then hung those over the arm of the couch while attached to my ankle. Hard to describe...

    Like I said, that ortho is full of sh*t and you need to find another. Until the technology is improved, we poor patients will have to keep trading in our implants. At 32, with my first implant, the docs said I'd need revision in 10 years. Well its been 14 years so far!

    If you live to be my age you'll probably need another. And you'll need drugs too. My usage was unfreakingbelievable prior to the THR, so be glad you got those. MANY pain patients are not properly treated.

    I hope you get your THP very soon. Be prepared for lots of PT afterwards and you may need shoe modifications due to leg length discrepancies postop.

     
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    Old 09-07-2013, 06:12 AM   #14
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    Hey Family, I am back!!!! You all know how I type essays instead of posts but I will make this quick *** possible. Do you all remember I need clearance from the primary before I could do the surgery. Well, I ended up going to my doctor and My Blood pressure was high and my EKG came back abnormal. So he wouldn't give me a clearance for the surgery which was scheduled like a week from then. He wanted me to see my cardiologist. Well when I called the surgeon that was doing the THR and told the nurse what was going on. She said she will let the doc know. Not even 30 minutes later I get a call from the surgeon himself. He was very upset. He asked about my hypertension and how long I have had it. He asked for my primary physician info because he wanted to talk to them. We talked for over an hour and he was just telling me that with my lupus, hypertension and all my other issues, I may be waiting months before getting the THR and he is not comfortable waiting like that. It will do nothing but get worst may start to cause other issues, that I don't need. After asking me have I ever been under anesthesia and had any problems. Then He said hell call me back. At this point I am confused. Don't know what is going on. Later he calls me and tells me that he wants me to come up to the hospital as planned with my luggage and all. (forgot to tell you all the surgery was scheduled the next day that he did all this) I wasn't prepared at all because I didn't get the clearance. And I told them about me not getting cleared almost a week prior to the scheduled surgery. So he goes to tell me that he wants me there at 9 instead of 11 because he has talked to all these different doctors and they all agreed that I come to the hospital to see the cardiologist there and he will do an assessment on me. If he doesn't think I should then I wont have the surgery and we will just have to wait. Well, after getting bloodwork done, ekgs, etc, about 2and a half hours later my orthro surgeon came in my room and said, The cardiologist gave the okay and that I will be having my surgery at my scheduled time 2:15 pm. I was just terrified, everything was happening so fast. Not even 24 hours ago the surgery for the THR wasn't even a thought anymore because my primary doctor was talking as if It will not be any time soon that I will be getting this surgery done. So that same day I went and had my surgery. Oh my goodness, after the surgery I was in so much pain. Which we all knew that would be a huge possibility because I was already on pain meds for my lupus. Oh to answer one of your questions, I take Fentanyl patches 75mg and Percocet for Breakthrough. I have been on those for the lupus. So the first night in the hospital they gave me a PSA pump of dilaudid. That wasn't even helping like it should have been so they ended up increasing it in the middle of the night. I was beyond miserable. I just felt so horrible that I was thinking if I made the right decision. Because I had more people in my ear before the surgery saying that I shouldn't get the surgery done because I have lupus and for normal people the recovering process is slow and horrible.and problems happen all the time. With me having lupus, my body is going to reject this surgery and I'll get all kind of infections and my bones are already no good so I may not heal quickier that others. I mean they really had me worrying. But surprisingly after the pain became manageable, My hemoglobin was extremely low, so I had to have a blood transfusion. They had to give me 2 units. After that I stayed in that hospital maybe 2 more days then they transferred me to my local hospital. Its new and they have a rehab facility there. So I stayed at my local hospital for about a week. The pt rehab is known to be intense and they don't play. Well I can agree. The third day of rehab all the pt and ot that was working with me had a care plan meeting and then they meet with me and my family the give us a expected home date. It was three days from the day of the meeting. They said I was doing great and they were shocked at how much I was able to do. So I was only in the hospital for almost 2 weeks total with the rehab included in there. Now I am back home but it is still work in process. Its still a lot I cant do. but for me to have just had my hip replaced 3 weeks ago, I am proud of my self. I think being so discouraged right after the surgery and hearing some family try and discourage me from doing it because they know whats going to happen, Ik think that gave me more motivation while doing the therapy. I still have therapy but this Is home care that was ordered by the surgeon. So PT and nurses colme out 3 days a week and this will continue for the next few weeks. Now I am not going to lie, this is very painful and it still takes me years to get to one room to the next on the walker. But my father (my rock) brought me over a porta potty and put it in my room. I wasn't doing to well making it to the bathroom with the walker and the hip, I move like a two legged turtle. The nurse that comes in said that she can tell I am doing too much. She said 70% of the time I need to be resting. She was telling me how important it is that I don't over do it an fall or worst.dislocating it. Its a process but I am glad that I didn't listen to certain people. Cause the bottom line, with AVN I would have had to had the surgery and the doctor already told me that now I need to pay attention to my other hip. What an experience. The good thing is that all my doctors are being as helpful to me as possible. Even my pain doctor has been helping. And my doctor is very straight by the book. He's been my pain doctor for over a year or two. So last week, I knew I needed to make an appt. they had me on hold forever then they tell me that the doctor is going to have the nurse that comes my way home so she will bring me my prescriptions. In all of you all help, support and understanding. Well the surgeon said that we looking at three months when I wont need an walking device and all. I will be on here a lot more so if you have any questions for me please let know.
    __________________
    Dx Lupus (SLE) 1996
    Dx Tumor (pituitary) 2010
    Dx Pancreatitis 2011
    Pancreatic Stent
    Osteoarthritis
    Stroke
    Leukopenia
    Migraines
    Power Port implant 2010
    Total Right Hip Replacement

     
    Old 09-07-2013, 06:41 AM   #15
    gmak
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    Join Date: Oct 2012
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    Re: Help Me! Been on meds for years and they want to give me more meds!!

    Hi luvin music, Wow! Well its great that its done & you are recovering so well! You always make me laugh & how is the pain now as opposed to preop pain? You sound cheery but you always do even if in dire straits! Wishing you the best & speediest recovery, keep working hard & dont forget to watch your bp! The home health nurses are probably checking that come to think of it, take good care of yourself & God bless you!

     
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