I hear that Tree69.....I'm convinced that my adult children and my neighbor lady and old friends etc. think poorly of me. Just because I don't look like anything is wrong with me they think that I'm either making this stuff up so I don't have to do things and that I'm lazy maybe. I don't blame the old friends for leaving because I can't offer them anything and can't do a lot of things anymore. My children have gotten better in accepting it but theirs no caring really. They have their families with small children and they work and I know that they are busy but it would be nice to ocassionally be offered some help as I live alone in my house and still have a dog and cat to care for and yards to look after and snow to shovel. My shoulders are getting worse and one of them has tendonosis which of course will cause a flare in the TN and that's my main concern. Thankfully I don't have to work because there is no way I'd be able to keep a job. I also have arthritis in my knee/ankles/back. How many times have I heard..."you just need to get out more". Again it's somehow my fault. Sometimes it's all very depressing.
I used to get so upset with them as I didn't understand either what was happening to me. But since I have had other things diagnosed with xray's and ct scans as well, to me there is proof and I am learning and accepting (due to this site mostly) that it doesn't matter what they think because I'm doing all that I can to manage this beast and it's not my fault as if I DID something wrong to receive all these problems and pain. Or as if I'm NOT doing something that would supposedly cure me! I too gave them literature and told them and still tell them from time to time. But I haven't for awhile because it just falls on deaf ears.
However it would be nice to see some actual caring and helping instead of judging!
I wish you all the best with your Dad and I hope that he will help you and have compassion on you instead of judge you!
Interesting that it's family members who have such an issue and I'm wondering if it's because they can't accept that we have changed? I know that I have changed drastically and can't do what a normal 55 year old woman can do, like work (so now I'm poor) and host family dinners, I can't even go camping anymore which in my family is a huge deal. Oh how I miss it!! I can barely babysit my Grandchildren but I do from time to time and then I suffer in silence for about a week. Somehow I think if maybe I had a supportive husband things might be better? On the other hand I just started using the handicap bus and I have heard some sad stories how mates leave mates who become disabled.
On a good note, here in Calgary Alberta Canada we have a Chinook which is caused by winds that bring in a warm front. Usually these winds cause a flare up but today has been good, I was able to get outside and open some windows (we just had a cold snap with lots of snow) and it's sunny!!!!!!
I'm praying that my face stays this way today and tomorrow.
Take care,
Cheryl
Tree69 said:
Lily has a wonderful point that stretches very deep into personal relationships with family's. for ie: My father and I have been at odds because of his insensitive attitude towards the fact that I am not only in a great deal of pain but that pain makes me ill and unable to be who I am expected to be in HIS eyes. I thought that I had explained it and gave him literature to match the severity of the illness. But he informed me one day, like I was too proud of him, "that he read an article in the doctors office the other day, and it said that everything would be ok because they can cure you with the MVD you had". He had never listen in the first place to the fact that it was educated knowledge that my MVD would make things better but not cure my pain, because I have more then TN, I have had it for 20 yrs, and its Atypical face pain also.
I feel he was miss informed by some neurosurgeons add or something that did not paint the real picture.
Keep up the research its our only cure!!!!!-Tree
Lily said:My Humble Opinion Alert.....I came to this article from the link in the email that was sent out
Perhaps my viewpoint is pessimistic after having a failed MVD, an unsuccessful PNS, many nerve blocks, and a merry-go round of anti-seizure meds, anti-depressants and opiates, but I must disagree with this surgeon's glowing representation of his own treatment success. Many of us who have dealt with this illness on a long-term basis know that the outlook is not as rosy as is represented here, and for me personally, for once I would like to have a link that I could forward to my family that explains the disease, which is done well here, but does not lead them to wonder why I haven't been cured since it appears so easy when one reads this article. I'm not meaning to sound like a grumpy-pants, I am feeling very well this morning and for that I am feeling very happy - every good moment is like a gift to me. So I am off to spend it doing something good.
Hope everyone is having a well day!
Lily