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| I am so tired of fighting this battle alone. I've had seven major abdominal surgeries and am in a great deal of abdominal pain, radiating to my back. I've been on a variety of pain meds, but for now it's methadone, fentanyl and oxycodone. My pain doctor and my husband are definitely NOT supportive of this regimen and want me off of it, to the point of wanting me to go into a 45 day in-house program for drug addicts to get off of it. I got off Neurontin in early January because it was causing me to jerk wildly and just getting off Neurontin caused my pain to increase. I haven't shared that with my husband. The doctor has also pressed me to have a pain pump implanted but I am scared to death of that because I've had infections with every surgery I've had, bar none and I definitely don't want an infection in my spinal fluid. I could fly to Germany for one more surgery that a doctor in Pennsylvania thinks would be the best bet for reducing my pain markedly, but my husband is against that. So I'm between a rock and a hard place. So . . . I'm just looking for a little positive caring support and I hope I can offer that to others in the group, too. I chose toughhummingbird for my name because they are tough little birds and can recover from a lot of things. Talk to me, folks. Thanks, THB (toughhummingbird) |
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| | | From: Dan | Sent: 2/16/2007 10:46 PM |
Hi, THB. Welcome to the family. I'm Dan, one of the managers, which just means you get to yell at me if you don't like something. LOL It's not surprising that your husband is not very supporting. Unfortunately, a lot of spouses are that way when they're confronted with the reality of what we deal with. And I don't know that we've come up with a solution to that. Over on the left there's an Open Letter to TABs that is good to show those who are not burdened with chronic pain. That might help. Oh. Yeah. I forgot to tell you. A "TAB" is a "Temporarily Able Bodied" person. Heh, heh. As for doctors that are unsatisfactories, we have a tried and true fix for that. Fire him. You're paying him. Right? If he's not performing to your satisfaction, find another doctor. There are many other things besides narcotics that help with pain. There's meditation and biofeedback; there's cognative recognition therapy; and so forth. Not all of it works for everyone, but sometimes it works for some of us. I meditate regularly. And it helps me tremendously. There's a lot more stuff over on the left there. Let us know if you have any questions and welcome again. Healing hugs and lots of love, Dan |
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I am in the process of firing my "pain doctor." It is so difficult to get in to a new pain doctor in our area because your old doctor has to refer you to the new doctor so it's a delicate game of "don't piss off the old doctor to get to the new one."
I appreciate the letter to TABs. I'll use it soon, I'm sure. Not only with my husband but with others who do not understand my situation.
I really wish that somewhere besides California actually had a Pain Patients Bill of Rights as part of the law. Neither the doctor can get in trouble for giving you what you need for your pain in the proper doses nor can the patient for seeking it out. I was out there for a week and saw one of the preeminent pain doctors in the U.S. and he gave me all of the meds I needed to take care of my pain, bring my pulse rate down to where it should be, and enable me to have a decent vacation with my husband and our friends we were visiting. Every state needs the same law on the books.
Thanks everyone!
THB |
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Hi toughhummingbird, I'm tomcat and just found your entries while checking the bio boards. I don't check it that often since we use the "general" board for the majority of our posts. Why don't you join us there and you can get to know everyone? You'll have so much support from everyone and some of our members have pain pumps and can tell you more about them. Come to the general board and ask them what they think about theirs. I'm sorry you are having such a difficult time with getting your family to understand your chronic pain. It took a while for my husband to "get it". He finally does. Take care and hope to see you over in the other room. tomcat asst mgr |
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Hi Tough: I love the name you use, because those in pain have to be tough! We CAN't give up! It's never good when a dr. or family member is not supportive towards us, because the struggle we face is tough and we rely on others to share their strength with us. I hope the right decisions can be made to get you the treatment that will benefit you most. Best wishes, Raymond. |
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THB, I just found your bio. Sorry to hear about your pain. This is a great place to be, we "get it" and all of us have different levels of pain and different causes so there is always someone who can relate. Most of my family has no idea how much pain I am in. I have endometriosis so I can relate to abdominal pain that radiates into the back ( I have every kind of pillow, massager, heating pad, etc. but sometimes it's still impossible to get comfortable). Let us know if we can help in any way. Sometimes it helps just reading other people's posts, but everyone is really nice so don't be afraid to post! Samantha |
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you are a tough hummingbird! Hi! Do yourself a favor and google side affects of oxycodone and you will see that it contains ACETAMINOPHEN! That means it can harm your liver. there is a supplement that is a wonderful antioxidant plus it neutralizes the affects of ACETAMINOPHEN on the liver. It is called NAC! If you e-mail me, I will tell you where you can buy it for a low price for a 3 month supply.I wish you a solution or relief to all you are going thru. Raymond. |
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