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bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 7/10/2009 6:30 PM (GMT -7)   
Hi all:

I am really struggling to cope with my level of pain (9/10) and I really feel like I'm reaching the end of my rope. I am so frustrated with the fact that it is affecting every area of my life and I feel like my PM just doesn't give a crap.

I can't even seem to get my thoughts out and write them down to explain how I am feeling.

I have not had any increase in my pain meds in over 3 years and he has no intention of giving me any. Although I at one time I thought he was a fantastic doctor, something in him has changed. It has taken me a long time to come to the point where I would like to change doctors, but I have to travel 2 hours each way to see this one, and there just are not any pain docs near me. On top of that, I am being told that pain doctors will not take on patients that have pumps that have been put in by another doctor.

I just don't know what to do.

Lorie

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/10/2009 6:56 PM (GMT -7)   
 
 
  Dear Lorie,
 
    It is good to see you again. *warmest huggs* 9 / 10 makes its hard to talk much less get your thoughts out. Even if you just pound the key board a few times and post it we wont mind one bit! *huggs*
 
 am so frustrated with the fact that it is affecting every area of my life and I feel like my PM just doesn't give a crap.
Well thats good. I dont think Id want your PM to give me crap either *pew* Or maybe he thinks he is "special" and it doesnt stink rolleyes
 
I dont know much about the pumps other than what I have learned here. I bet one of the other ladies will stop by with good advise on a new path to take. *warm huggs*
 
Gosh I hope it eases at least a lil bit, and soon.
 
*huggs*
dani
 
 
 

TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 7/10/2009 7:21 PM (GMT -7)   
Hi Dani:

Thanks for the reply, it made me smile and that's hard to do these days!!!!

I hope you're doing O.K.

Lorie

Smoochie
Regular Member


Date Joined Jun 2009
Total Posts : 71
   Posted 7/10/2009 7:22 PM (GMT -7)   
I don't know where you live but here in Ohio I don't have a problem, I also have a pain pump and my doctor that put it in just moved to California and I had no problem finding a new doctor to take me on, I also never have had a problem getting an increase in my pain medication. I don't know what the change was in your doctor but even though it sounds like a pain (no pun intended!) it might be better to locate one that is more amenable to raising your medication to discover what is working for you. I checked the American Board of Pain Medicine to find one there that is registered with them, hope maybe something helps, I know how you feel, good luck, and I hope you get some relief.
 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/10/2009 8:43 PM (GMT -7)   
Lorie,
I'm so sorry you're having such a rough time. And others with pumps here have said how difficult it is to find another doctor who will take you on. That seems so unfair. (Smoochie I wonder if you didn't have a problem because your doctor moved away)

I'm betting you're right - that something has changed with your doc. Whether he's burned out or in fear of the DEA or whatever, but still, it's affecting you. I read Susie's (straydog) posts about how her new doctor was so much better than her old one when it comes to dealing with pump meds. I wish I had some ideas for you.

Just know we're here to listen, but I know that's not enough.

Hugs,

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13454
   Posted 7/10/2009 9:58 PM (GMT -7)   

Hi Lorie,

I read what Smoochie posted and that group is online I believe, maybe look at their site and see what is on there. Another group is Pumpsters. There is a guy there that keeps a list of "good drs" that he has compiled for years from pump people that had good pump drs. I will need your city & state and would be more than glad to contact him to see if there is by chance a dr somewhere close to you. Gawd, I wish you lived where I do or even close to where I live.

 I also saw a post from Stella Marie where she contacted Medtronic directly and was able to find a new pump dr thru them. She too found she was hitting a brick wall because of no dr wanting to take on an existing pump patient. Have you ever contacted Medtronic directly about a new dr? I think if you explained your situation to someone there you may be able to get some help. Its sure worth a call.

I know travel is difficult for you, but it does look like you will have to do some driving. But if you can find a decent dr it will be worth it.

My story & yours is alike in some ways-we both liked our drs and thought we would be taken care of, little did we know. We both were refused increases in our pumps. I can still hear his words echo in my head, "but you are on the strongest medication there is." One part of that statement was true-but I was also on the lowest dose dang near too. He failed to throw that in the mix.  

I need to ask you something and see what your thoughts are or even if you have entertained the thoughts at all. Considering where your pain level stays at now, do you think your pain level would improve if you did not have the pump and was back on orals meds only? How aggressive would your dr be with orals meds at this point? Just thougts hitting this tired brain,lol.

I did have a bit of a surprise on my birthday. I had received cards from my sisters and a friend. Also, saw another card in the stack of mail and opened it, a birthday card from my drs office and each of the girls signed it including the dr, such a surprise, but a nice one for sure.

Somehow there just has to be a way to get you the help you need. We can't give up on that idea at all.


Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Swveral other health issues just not enough roo to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 7/10/2009 10:37 PM (GMT -7)   
Lorie, I can relate and understand the frustration and depression that you go through. I fight constantly to keep possitive and not to get that feeling like you are trying to tread water and not sure you can keep your head above water. I don't have any great words of wisdom that I can share but I try to find something to focus on besides the pain and irritation dealing with doctors. Right now for me it is very difficult but I press in hard. Right now I would gladly drive 2 hours to find a good Dr. that would treat me like a person. That does not mean that I would enjoy the travel but when you weigh the pros and the cons I would opt for the drive over having a Dr. that is not compassionate and giving me the care I need. I know you are struggling but just hang on. When you are at the end of your rope, make sure you tie a knot and don't let go. I have gone through times when I would write a post and delete it as I did not want to whine and complain. I have found that we all understand that it helps us to let it out and this is a safe place. I will add an extra prayer for you tonight.

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 7/10/2009 11:30 PM (GMT -7)   
Hi Smoochie, PaLady, & Susie:

Thank you all for your responses, your words of encouragement and suggestions are very much appreciated.

Smoochie: I will look up the American Board of Pain Medicine as you did. I am also going to try and contact one particular nurse from Medtronic who has been in the operating room with me several times. Thank you for the suggestions.

Susie: I am more than willing to give you whatever information you need. I live in Bloomingburg, NY which is a tiny little town, but I am about 15 miles from Middletown, NY which is the closest "city". They call my area the "Tri-State area because I am about 1 hour from New Jersey, and about 1/2 hour from Pennsylvania. I am about 1 1/2 hour from New York City, but it is not an easy ride, but it is prohibitively expensive for tolls and parking.

I had started looking in the Englewood, NJ area - it is about an hours drive each way, and I have heard very good things about the hospital in that area, but so far I have only been able to find Physiatrists doing pain management, and being that I used to work for one, I just cant imagine them being super knowledgeable about pain pumps. Maybe it's just me, and if I am wrong, please feel free to tell me so.

The other obstacle I am encountering in looking for a new doctor is that the ones that have come highly recommended don't take my insurance. It is very frustrating because I actually have really good benefits as my husband works for the State of New York as a Corrections Officer. I have what is called The Empire Plan. The carrier for doctors visits, outpatient testing, etc. is United Healthcare and the hospitalization is through Blue Cross/Blue Shield.

I absolutely can not afford to go to someone who does not take my insurance unless they are willing to accept what the insurance gives them as full payment. That is what all of my doctors in New Jersey have always done for me if they were not participating providers.

I also wish that I lived in your vicinity. I'm afraid that you have a one in a million doctor and that there just aren't any others like her.

I have given some thought to whether or not the pain pump is doing me any good, and I firmly believe that if I went back to just oral meds that things would be even worse. The last two times I told my PM how much pain I was in, he suggested taking the pump out all together and I think it was done to shut me up. The Nurse that comes to fill my pump and I have both been trying to get him to consider allowing me to use the PTM feature on the pump, and his initial response was that he does not have one patient that uses that feature nor does he know one pain doc that has even one patient that uses it. I told him that my nurse and the other nurses from her agency all have patients that use that feature, and my nurse offered to gather information about those patients to submit to him (she has even offered to make the 2 hour trip each way to go and talk to him in person about it) and he agreed to look it over, but all attempts by her to get in touch with him have gone unanswered, and now she is about to go out on maternity leave.

My nurse feels very strongly that he is under-utilizing the pump, she tells me all of the time that she has patients on a much bigger dose than I am on, as well as several different meds in their pumps, but my PM keeps telling me that I am on a "hefty" dose, and that hopefully I am going to live for a long time and he has to save somewhere for us to go in the future. The hell with whether or not my quality of life now is worth living.

My nurse has tried to find me a new doctor, and as I said all of the good ones didn't take my insurance and the one that did, even though they explained that my reason for possibly changing docs was because my PM was undermedicating me and that we wanted to try the bolis feature and he seemed to agree to try it once he got to know me, after several appts. I brought up the idea for the future, and he told me that he had no intention of allowing me to try it either.

I'm sorry this post has gone on so long, and I hope what I wrote makes sense. I am really having a hard time gathering my thoughts and staying focused on anything. I appreciate your help and support more than I can put into words.

Lorie

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 7/10/2009 11:49 PM (GMT -7)   
Hi Fatherjohn:

Thank you for your reply - I really am trying to hold on, but I'm not doing a very good job of it this time around. When I see someone like you who just keeps pushing past the pain the way you do, honestly it makes me feel really bad about myself because I used to be able to do that (Please don't take offense as I don't mean to make it sound like you are doing something wrong, I feel like there is something wrong with me!) - I continued working for a long time after my accident, but I just don't have the strength to do it anymore.

After having 5 surgeries in one year, I got to the point that I was pretty much in bed all of the time, and all of the responsibility for everything that keeps a family going was falling on my husbands shoulders, so I worked very hard to get myself back to the point that I could take some of those things back on myself, and although there were definitely days when I couldn't do much, I pushed myself to maintain some level of activity. I feel like all that I worked so hard for is slowly slipping away again, and I feel like a complete failure and I'm just so tired of having to put so much on my husband and my children. As much as they try not to show it, I know they get resentful, and I just feel like a huge burden that they would be better off without.

I'm sorry for being so negative, I'm going to sign off now.


Lorie

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 7/11/2009 12:45 AM (GMT -7)   
Lorie, don't be sorry for being nedative. I know that when we think during our pain, depression and feelings of helplessness, we come to the conclusion that everyone would be better without having to put up with our constant ways of making others adapt because we can't be normal. They have to pick up the slack because we are dealing with chronic pain. They can't see the pain or the intensity. They may see the effects it puts on us but they can't understand the depth that we are in. I told my wife the biggest problem for me if I decided to end it would be that she would be left with very little since suicide expempts the life insurance companies from paying out. So you think in those bad times, how could this be done to make it look other ways. Then I realize it is not about escape, money or release from Pain. It is the separation from my family that means more than any of the other reasons. God put me in the place to be the father and the husband. Now I have to trust He will give me what I need to continue. Thus I try to refocus. Why does my wife need me? Why do my children need me around? What would they miss the most if I were not here? I even ask, If I have to endure with the pain like this the rest of my life, what do I have that would benift those I love. I don't hide my pain from them. I don't minimize it normally. My wife recently told me I was not aware how much our family has been affected. I asked her if it would be affected more or less if I was gone. The answer, we will deal with how pain affects the family. When I was working through drug annd alcohol addiction, people told me just take one day at a time. I could not accept that. First, there were times when it was minutes at a time. Then I focused on what my dreams were and what I wanted from life. Looking ahead helped me take it one minute at a time when it was at that point. Fighting and even finding small victories can give us all we need to continue. also, there is no offense taken. I am of the philosophy that people can't offend me unless I allow them. I can accept or reject what people say. If what they say can help me, I accept. Other wise why allow someone that kind of influence in your life. But what you said was good. You have been able to deal with things in the past, you are weak right now, but you are not totally defeated. Look at your family and how you love them and even the little things you can do to show them how special they are. No defeat there. Not all my days are as victorious. I will share more about that at a later time as this is getting to long. Blessing to you. 

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13454
   Posted 7/11/2009 12:46 AM (GMT -7)   
Lorie get the nurse to give you the info to give to the dr before she goes on maternity leave. it may be better him having to deal with you directly when you are giving him positive info about the PTM. I wonder if he would be willing to discuss the PTM with a dr that allows his patients to use it?? Will write more later in the day.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Swveral other health issues just not enough roo to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/11/2009 12:46 AM (GMT -7)   
 
 
  Dear Lorie,
 
   You are not a failure! Tired, yes. Frustraited, yes. Physically exhausted!!!! But NOT a failure. Ever.  Your compassion knows no bounds. Your kindness towards others moves us all to do the same. We know you are doing everything you can. You are NOT negative. Slightly grumpy :-)   Please don't feel like you have ever let anyone down.  You ve not let us down.
 
 *huggs* 
 
   dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/11/2009 1:21 PM (GMT -7)   
Hi Lorie,

I sure do know that helpless, drowning feeling. It is really scary to not know what left to try, or if there is anything left to try! It sounds like you should still have a lot of flexibility left, but that your doc just isn't willing to experiment or take any risks with you. I don't really know much about the pump other than what i have learned here, as well. Sometimes I think that if we could all just find good doctors, we'd have much better qualities of life, as we need someone willing to work with us & for us. i hope that you are able to find a new doc to take over your pain management & give you back some of your life!

Have you looked anywhere in NYC? There might be more options down there because there are so many big & well known hospitals & the docs there probably have significant pump experience. I'm in the process of resorting to a similar option, except in Boston -- we're hoping that they'll have some more ideas & options.

I wish you the best of luck! I'll keep you in my prayers. I that with each day you gain a little more strength! Pain is so incredibly exhausting - both emotionally & physically.

Skeye

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13454
   Posted 7/11/2009 2:14 PM (GMT -7)   
Lorie I have another place for you to check out drs on; National Pain Foundation. You will have to register but thats all, you can opt to receive their newsletter via email. They do have a list of pain mgt drs and you can see if there is anyone in your neck of the woods or surrounding area. I think it says the drs gives some details on what their practice is about. Worth checking into. Working on the other stuff for you too.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Swveral other health issues just not enough roo to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/11/2009 3:31 PM (GMT -7)   
Lorie,
You've been given so many great words of wisdom, I don't need to add any. I just wanted you to know I was thinking of you and sending you hugs.

I know it may sound too much to go to NYC, but yet there have to be some great choices there. Even maybe by phone or internet, you might be able to get someone to help you find a doctor that would accept you, your insurance, and knows more about the pump like Susie's new doctor.

(((((((((Lorie))))))))))

PaLady

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 7/11/2009 4:24 PM (GMT -7)   
Hi Dani, PaLady, FJ, Susie, Smoochie & Skeye:

Words can not express how much I appreciate your words of encouragement, advice, hugs, & prayers. I am still not doing well today - I am literally shaking from the pain. I will follow up on your recommendations.

Susie: I so appreciate the time & effort you are putting in to try and help me.

I keep reading your posts over and over to help me get through hour by hour, or minute by minute.

I have to go for now,

Lorie

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/11/2009 4:36 PM (GMT -7)   
Lorie,
Susie is a wealth of info. on this topic, so I'm glad you're relying on her info.

The rest of us who don't have experience with this will be here for you to lean on anytime!

Hugs,

PaLady

Smoochie
Regular Member


Date Joined Jun 2009
Total Posts : 71
   Posted 7/11/2009 5:40 PM (GMT -7)   
Lorie,
I see you are not doing any better and was so hoping that I would check and see maybe some improvement. I wish I could reach through the computer and make you better at least a little bit. I know how it feels when you think this is it I can't give anymore because I have nothing to give, I have been there and it sucks. I would like you to know that there are alot of us that are wishing you well and checking on here to see if you might have posted any relief. There have been times when I have thought if I don't wake up it will be better, obviously I was wrong but at the time it didn't seem to matter, my family knows of all my pain and is very supportive but I, like you, hhave got to a point where I feel useless and not even close to the person I used to be when I worked, so I do understand. Once again I wish you some relief and if I can help in any way please let me know. Take care.
 


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 7/11/2009 11:10 PM (GMT -7)   

Hi all:

I just wanted to let you know that I may not be near a computer for the next day or two.  I am going with my oldest son to Cortland University where he will be going the end of August to work on his bachelors degree.  I was not able to go with him when he toured the school in April because I had just had surgery a couple of days before.

I really am not in any shape to be doing this, but I just can't let him down.  He is going to register for his classes, and then we are going to stop by the store that he is hopefully transferring to (he works for Dick's Sporting Goods), for him to meet the store manager in person.

We are going to go up tomorrow and stay in a hotel as it is a 2 1/2 - 3 hour drive one way, and even if I was having a good day, that would be extremely tough on me to do all in one day.  Depending on how long it takes to do what he needs to get done, and how I am feeling, we may stay Monday night as well.

I was really hoping to be in better shape for this as I wanted it to be an upbeat, happy time since he will be leaving home for the first time in about 6 weeks. 

Thanks again for all your support.  I could really use your prayers to help me get through this trip! 

Lorie

 

 

 

 

 


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/12/2009 8:37 AM (GMT -7)   
Hi Lorie,

Best of luck on your trip! I hope it isn't too painful for you!

Skeye
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