I am sure everyone has done the denile thing once in their lives. Mine was chiari. I was diagnosed with this over a year ago. My mom found this website for me since the one for her issues helped so much. I logged on and read through some stuff but really it was like I was doing it for someone else. I would get support emails from people and I would ignore them, all the while with migraines driving me crazy. I guess i thought that if I didn’t respond or if I made myself believe the symptoms were from something else that would make this all go away.
Today for some reason I got on this site and read some information. It hit me then. I will never be normal. No matter what medical procedure or medicine I have, I can never get rid of this. I broke down crying after that.
I wish there was a support group where I live. I wish I could look someone in the face, that has this, and get help. I love that this website is here, don’t get me wrong. For so many this is a saving grace. I hope it will be for me too because I feel so alone and no one here seems to understand what I am going through.
Sorry about this oh pity me message. I had to get it out and I thought that maybe some of you were feeling the same way.
I think we all feel this way at times! It's so frustrating when you have limitations. It's hard to get together with friends because I never know what kind of day I'll be having. If I'm headachy and dizzy then I just have to stay home. Going to work exhausts me so much that all I can manage to do is rest when I get home. Car trips kill my neck so I have had to limit weekend getaways. I had to quit exercising because it made my symptoms worse. Definitely sucks to not be normal. I am right there with you!
Thanks for all the replies. I guess my depression really hits sometimes. Is that a symptom of chiari? I have been treated for depression and seen a therapist for it but after 2 years nothing was resolved so I quit going. I guess I should update my profile because I am taking nothing but Motrin for the pain. I do my best to ignore and move on. Some days I can’t even muster the strength to get dressed and my friends and family (except my mom) does not understand that. I have no friends. Every time I try to make one I have to cancell on them so many times they quit trying all together and get made at me. I try to make them understand that I really want to hang with them but I can’t. My headband doesn’t understand either. Her suffers from migrains but mine has nothing to do with him. He expects a clean house and dinner on the table every night, no matter what. Don’t get me wrong he really is a wonderful man and he is understanding to a point but he just doesn’t get me. Now I have limited insurance and haven’t been able to get into my regular doc. I know there are avenues I can go down, and I will. I just have to get going on it.
By the Beebe. No hard feelings. You gave me something to think about. I am not giving up I am being realistic for once. I can’t go around saying I have no limitations when there are limitations. I just have to figure out what mine are.
For those who are not in the Genesee area you would not know what Genesee health plan is. It is a basic free health insurance. I am grateful to have it since I can go to my primary doc but not a lot of docs accept it. The doc I am with, I have never met her. I have went for two appts now and have never been seen. Either she is hours behind schedule of she never shows up. I am going to look for a new doc but it could be a month or more before I get in to she the doc. I hearted about the insurance plan someone posted on here. I am going to look into that since it is for people with illnesses like chiari.
I think that if I can get something for my headachs and depression then I gpcan do better. The other symptoms are not so bad that I would need anything for those.
Anyway. Thanks all for letting me vent and get it all out. I really needed to do that with people who understood where I am.