[Robyn6447]

Hi, I haven't posted on here for a long time but I still read the posts. I have ATN, I have had it since 2004. In Dec. 2006 I underwent mvd surgery in Pittsburgh, I was told I had a 40% chance of it working but hey that;s better than zero. Long story short it failed I was directed to pain management and was put on the Fentanyl patch to help with the constant pain. I take neurontin and bacoflen also. I was put on disability by my workplace because of the patch and have been on it since May of 2007. Now for my problem, my daughter who is 28 and will be getting her master's degree in social work in Jan. has been in total denial about my condition from the very beginning. She was even present during my surgery! She tells me I am not in pain all the time no one ever is. That I use my pain as an excuse I need to get over it on and on. She makes my life so miserable. I have depression due to my condition and her and she tells me to get over it. This is a person getting her masters in psych and interning at the local veteran's hospital!! I have tried numerous times to get her to go online and read what ATN is, she will give me the excuse she is to busy and has other things needed done. I gave her one of my Striking Back books to read same excuse there and after having it for two yrs and not reading it she finally gave it back to me. I just don't know how to handle her, I would probably move away from where we live but she has three girls and I can't leave them tho my time with them is limited due to the pain. Anyways if anyone has any suggestions on how I'm supposed to deal with her I would love to hear it. She really is driving me crazy! She even now has diagnosed me as being bipolar even tho I don't have the symtoms other than the depression and I have seen psych and was diagnosed by them for depression. She thinks she knows more than them and has even told me she believes she is smarter than a medical doctor! Last week we ended up in a screaming match with me defending myself to her and listening to her trying to act superior to me and dismissing everything I said. I am at my wits end! They are my only family here and it doesn[t help my stress level to be treated like this all the time. Help! Any ideas??

[jjlsongbird]

Originally Posted by Robyn6447

Now for my problem, my daughter who is 28 and will be getting her master's degree in social work in Jan. has been in total denial about my condition from the very beginning. Anyways if anyone has any suggestions on how I'm supposed to deal with her I would love to hear it.

I'm so sorry that your daughter doesn't accept what is going on with you and thus can't be supportive. It doesn't sound to me like there is any way you will be able to convince her right now (perhaps the more you try, the more she will resist). I wonder if you can just accept (as frustrating and sad as it may be) that (for whatever reason) this just is the way it is right now, and acknowledge to her that you and she don't agree about this. ("I know you don't believe.... but this is what I am going through" - and/or "this is what the doctor's have told me...." "so I guess we just aren't going to agree about this"). Then try to focus on other things you can agree on, like your grandchildren or things you like to do together. I hope you can find peace with her seeming irrationality and enjoy what you can in the relationship. Maybe in time she will see things differently.

[ginnie]

It is not fun, when I family member cannot have empathy for your dissability. She may be too young to fully realize what you are going through, or cannot except the situation for herself. Sometimes you have to protect your own feelings and put yourself first. If you take a step back from her, withdraw a bit, maybe she will think first before she makes negative comments. I do know how hard it can be with a family member. I too have trouble with my daughter who is now 36. Unfortunately she was unable to deal with my dissabilities, and really didn't want to hear about it. I granted her request and withdrew from her life. This has been painful for me, but less stressful. I don't want to have to defend myself, when the medical conditions I have are my reality. I do have good friends who step up and are good support. Sometimes your friends can be better for you than your own children. You can pick your friends as they say, but not your family. Give her grace, even if she cannot do that for you. Be kind back, even if she can't, and maybe distance yourself just a bit. I do not like confrontational battles over things that you have no control over, so I choose the peacefull route as often as I can. I hope the holidays will give you peace in your life. ginnie

[morris051200]

I am brand new to this forum, I am very sorry about your daughter not understanding the pain you are in. I have stood by my wife for the past 6 years as her life has gone from a beautiful energetic young woman to a person who is condemed to the house becuase she cannot go outside in the breeze. She cannot go outside and walk with our daughter, she cannot play in the snow. She was diagnosed with Post herpetic Neuralgia 6 years ago and it has progressivly gotten worse. I also believe that she has trigeminal neuralgia due to her occasional tic's from pain in her face. I cannot even kiss my wife on the cheek anymore. She is on so many pain meds that she sleeps most of the day and then the pain flares up and she is awake of and on all hours of the night. SHe has told me if it was not for me and our daughter she would not be here today. (She knows why they call it the suicide pain). Your daughter says she is going to school to be a psychologist??? I think she is lying to you and is really only able to persue a degree in hair styling. And even then she doesnt have the compassion to handle that type of work.

I know what you are going through, I see it every day with my wife and wonder why in this great nation do we spend money on the research of medications to make your damn eyelashes grow faster but cannot put money in the research for conditions that are disabiling.

good luck I wish you the best.

[Mylastnerve]

Originally Posted by morris051200

I know what you are going through, I see it every day with my wife and wonder why in this great nation do we spend money on the research of medications to make your damn eyelashes grow faster but cannot put money in the research for conditions that are disabiling.

Well said, Morris, well said.
Lily

[mompeg]

I think the worst suffering can be caused by illnesses that don't show dramatic outward signs; like PHN. Once the Shingles is gone and you look OK again nobody can understand that you may feel a whole lot worse than when you had the rash and looked terrible. I know because I am suffering from PHN in the face and scalp. It has been 4 months since I could do anything social. My friends just don't "get" it. I look better, why aren't I back to my old self. I wish there was a way to shut off the pain, but there isn't.

[Mylastnerve]

Oh my god, this must be just heartbreaking for you. I'm so sorry. Your daughter has absolutely no right to make a psychological assessment of you when she refuses to understand a medical condition. She is NOT EDUCATED ENOUGH to make that assesment. Tell her that. Tell her that you will accept her opinion AFTER she earns her license (Which requires 3,000 hours at 20 hours a week and after that is a hellish test that only 50%-60% of the people pass).
I remember when I was that age, I thought that I knew everything - I was too young to realize that experience was the best manner with which to view life, and I suffered for it. I am so sorry. To be absolutely frank, in my early thirties I had an aquaintance who had broken her back in two places, and required vicodin for her pain. I would not try to comprehend chronic pain - I think that I was simply too scared to 'get' that person could live life suffering like that, and instead judged her for her medication use. Here I am years later, dependent on much stronger medications, and I feel SO BAD for having thought of her that way. Lesson learned.
There are times in my life that I have mirrored other people's behavior back at them as a way for them to learn - and of course, they totally resented me for it, but I felt better for having done it. I'm not saying that this is the best method out there, at all, but could you see yourself giving her the same superior tone that she gives you, but around, say, how young, ignorant, and inexperienced she is? That's one thing that I can think of - fight fire with fire, as they say?
Otherwise, you can take the road of zenlike acceptance, and remove your emotions around it, and approach her with peaceful love (that would be hard for me), but it may be a healthier route.
Finallly, this problem sounds so large, it would be great if you could get her to attend therapy with you. If she is indeed taking up psyche as her major, she will be required to take therapy herself as a requirement of graduation. Maybe that will help, down the road.
I have one more question. Is it possible that she is confusing Trigeminal Neuralgia with Fibromyalgia? I have had one more than one person in my life do that.
I am so sorry that I can not be more helpful - I would do anything to help you solve this problem, but my own imagination won't offer up anything else. Maybe someone wiser than me will come along and help with a better answer. In the meantime, please know that you have the support of the people here on this board, so please don't ever feel alone with this condition. I know that it could never replace the love of a daughter, but it's something.
Lily

[dnserror]

Hi!
Sorry to hear about this... Tell her from me that trust me .. it really hurts.. just 'cause you can't see it doesn't mean its in my mind or not real. (had a boss one time tell me "you don't look hurt"). Maybe with time she will accept this, or meet someone else that has it, perhaps with a stranger it would be more acceptable/understandable.

[Robyn6447]

Thank you all, she has been an absolute pain in the butt about this from the get go and now that she is going to college it is much worse. Don't think I haven't covered all the arguements with her, she just continues to patronize me. I was informed the other nite that again I can't be there xmas morning when the kids open their presents. She told me I could bring my gifts over xmas eve when I come to dinner. I guess I should be happy the last two years I was told not to come at all. Last year she told me "Lots of people spend xmas by themselves so it won't hurt you" I told her they are probably people who have no family or family that lives near them and I have grandchildren. She said "Well I don't know what to tell ya". Her husband doesn't like any of us and she doesn't want to rock the boat with him. So I guess I'll be alone again this xmas...

[Mylastnerve]

Dear Robyn,
It is everybody's right to expect to be treated with dignity and respect. This applies for everybody in your life, including family. I would tell her that unless she chooses to do this, you will have NO contact with her. You will only be willing to speak with hear once she learns this. Just because she is family, it doesn't earn her the right to be emotionally abusive to you.
In the meantime, join as many social groups as you can, and make some friends that are worth having, who DO treat you with dignity and respect. They are out there, and you can find them. Make them your chosen family, instead of the ones who treat you badly.
This is what I would do, in fact, I have already done it with a few family members.
You deserve pace of mind, and to be valued.

Lily