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Old 12-23-2010, 12:33 PM #11
ginnie ginnie is offline
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ginnie ginnie is offline
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Default family trouble

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
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Old 01-28-2011, 10:43 PM #12
morris051200 morris051200 is offline
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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.
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Old 02-06-2011, 12:07 AM #13
Mylastnerve Mylastnerve is offline
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Quote:
Originally Posted by morris051200 View Post
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
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Old 03-12-2011, 10:35 PM #14
mompeg mompeg is offline
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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.
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Old 03-18-2011, 02:39 AM #15
sincerelykaren sincerelykaren is offline
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Confused I know your pain and do not doubt your pain!

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Originally Posted by Robyn6447 View Post
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??
I wrote you earlier and evidently, it was too long. Please know, I know your pain. Your daughter needs to realize that a social worker listens and isn't taught to scream at a bipolar person with TN. I am not saying you are bipolar but perhaps, your daughter might just have a bipolar client with TN one of these days and should, as a professional, read more about TN. I was diagnosed with TN by someone who had done just that because she had a friend with this illness and because she cared, and was a professional, a nurse, she read up on TN. Perhaps if your daughter studied more about unusual and unrecognized illnesses, such as mental illness used to be unrecognized, she could then diagnose her Mother more correctly. I pray she never has a client with TN and doubts their pain and causes them to become mentally ill because she doubts their pain! She needs to remember that her clients will think of her as a professional and one who knows her stuff. Maybe if she studied this illness, she might be able to direct someone in the right direction and not the wrong direction. The more knowledge she has with regard to any illness, will help more than screaming at someone. Listening is a key of a social worker and having compassion for what is heard. Social workers are not trained to identify TN Patients. Furthermore, please tell your daughter that someone on this website was told that she couldn't be in this much pain by a TN Surgeon. However, after surgery in Pittsburgh, she was told that she had two arteries attached to the Trigeminal Nerve. The first question I was asked was, "Is there any stress in your life? If so, you do not need any stress. It makes this illness worse and come out of remission and it can go into remission with proper medication. I was on Neurontin, Tegratol, Avalide, Diazapam and something for energy because I stayed so worn out from the pain. Perhaps your daughter needs to seek out professional help to understand the symptoms of TN and how to deal with her Mother's illness before she causes her Mother to become bipolar, after being diagnosed as in depression because of doubt and hurt from those she needs the most at this time. TN can cause depression but not being screamed at and doubted might just help her Mother get better. I am curious about where you had your surgery in Pittsburgh.
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