I am going to see a Neurosurgeon in Omaha on July 10th. It is about 6 hours from home. I told my parents on the phone and my mom asked if I wanted one or both of them to go. My dad then asked if I wanted them to go. To both I said I didn't know. I guess that my answer was more out of surprise that they just didn't offer to go. I know it's an extra 2 1/2 hours for them, but I was surprised.
It just seems that my dad has checked out of what I am going through. He asked if one of my friends would go with. I told him it was unreasonable to ask my friends to take two days off from work. He then emailed me to get the addresses of the hotel and hospital so he could print out images of what I should look for when I go to Omaha. The last we had left the conversation is that we would discuss it when I go to visit them this weekend.
Both of my parents are retired and have nothing going on, especially my dad. He just lays on the couch watching TV. My mom is active socially, extensive garden, and takes care of the dog. My dad didn't even understand why I had to go to see the surgeon first. He had work on his eyes and ddin't have to. I explained that there were quite a few options and I didn't even know what would be done yet.
I have sent them both the link to this site, information on TN, explained to them verbally, and talked about my meds. My dad said he would have the motorcycle ready when I got home to go riding. I said that wasn't goning to happen. he said we can just see. Then I said I can not have a helmet on my face under any circumstances. Then he said we can try different helmets or go without one. He doesn't get it.
My dad has always been there when I needed him before. Knee surgery,etc. No hesitating from him and no asking. Why does it seem like he has checked out? It really bothers me and I have been crying about it. It looks like I may just rely on my mom (step-mom) for support.
Mandie, a lot of family members have a really tough time dealing with pain in their kids or sibs. The process has strong parallels to emotional denial in other kinds of life-level losses. Especially in older people, not being able to help someone for whom one has been a parental care giver in the past can be very frustrating and scary. So people close down.
I don't know terribly much about your relationship to your Dad and Step-Mom, but one idea to consider would be a kind of reverse intervention. You might sit down with both of them and say "I am dealing with the worst form of nerve pain known in medical practice. I need you to be engaged and available to me when all I can do is rock and cry my eyes out with unspeakable pain. I need you to help me get to medical appointments, and to BE HERE for me and let me know I'm not alone. Even though you can't take the pain away. Even though it hurts you to see me this way. I need you to be tough enough to give me a reliable anchor while I ride out a force ten shit storm. Can you make that commitment to me or not?"
There are no guarantees in this kind of confrontation, Hon. Sometimes the answer is "not". But at least you know what you're dealing with.
Sorry that your father is not able to deal with your pain. It may be as Red as stated, but it can also be that even though you have sent him information, he does not understand the disorder. It could also be that as KC Dancer mentioned too. I go to the neurologist on the 10th of July also, my fiance/husband, Rik, is going with me. My mother who has health issues of her own offered to take me to the hospital where I had my ct scan performed so that I can get the film. She does not fully understand what I am dealing with but she does worry about how I am doing.
Mandie you are not alone. Alot of foks with TN have troubles with those around them "getting it". Part of it is that it is hard to comprehend someone you love being in that kind of pain when they look so normal. For me it was when my hair touched my face. I got to the point that I wanted to scalp myself. LOL!
I agree with "Red" though, sit them down and really talk to them face to face. Sometimes, just seeing your eyes, makes all the difference.
I had a MVD in 2003 that was unsuccessful and then the nerve clipped in 2005. Best decision I ever made from a pain removal point.
I will keep you in my prayers. Please let me know if you need a computer to lean on. :)
My mother and I have always had a strained relationship, over the years I have come to realize that she is sick, she is all about herself 1st. Since I got my diagnosis on this it has been better, but not great. My mom seems to think that she can fix this with her helpful hints, because she thinks I brought this on myself. I truly believe I may have gotten this from a car accident, but who knows. Anywhoo, Mom finally got it to some extent when she spoke to her cardiologist and he sternly advised her that this was very serious, but its not great. They are driving me to Hopkins next week and it has been a nightmare trying to coordinate that. Mom wont stay at my house because I have two huge dogs, she is afraid they will bump and bruise her because she is on Coumadin for her heart, again its all about her. I understand your frustration, like Red said , they cope the only way they can. I have realized that its not me, its them and who the heck knows what is going on in thier minds. I dread my parents being with me at Hopkins, but its the only choice I have right now...I just hope for the best, and I hope it works out for you as well..Wendy
I feel that if I was seeing a specialist for cancer, ms, broken bones, he would go.
I told him on the way there it would be a difficult drive since I will have been working since 530am and it's a 6 hour drive. The tegretol makes me very tired. Trying to save time off for "those days", appointments, and if I have a procedure done. He did suggest that I see if I can go off or cut back on my meds for those days. We all know that's the kiss of death.
I know I can make the drive. I just wanted my parents support there.
I appreciate the support and that's why I am so glad I found this site.
I agree with the cancer statement, this is a "hidden" disease, and although I am no longer me and can barely function on the drugs, you cant see the disorder. I look fine, unfortunatly I have to have a ride, i cant drive on this crap...I wish I could go by myself I would be better off...I just keep thinking maybe I will have a ride like National Lampoons vacation!! I try to find humour in every situation. lol
Mandie said:
I feel that if I was seeing a specialist for cancer, ms, broken bones, he would go.
I told him on the way there it would be a difficult drive since I will have been working since 530am and it's a 6 hour drive. The tegretol makes me very tired. Trying to save time off for "those days", appointments, and if I have a procedure done. He did suggest that I see if I can go off or cut back on my meds for those days. We all know that's the kiss of death.
I know I can make the drive. I just wanted my parents support there.
I appreciate the support and that's why I am so glad I found this site.