I don't know if I should really call myself 'sick' but I'm not sure what else to call it. I'm not sick with something like the flu, I'm just sick from the Chiari Malformation and everything that goes with it. At this point, I wish I could go back to when I just had head pain. That was before three surgeries! It seems like I've had increased and/or new pain and symptoms after each surgery. I keep thinking that before any of my surgeries, I just had head pain and fatigue. I was able to go work full time and go to school full time in the evenings. Now, I can't even work a part time job. I have trouble even getting together with friends for fun times. I now have head, neck, back, and leg pain that are all constant. The leg pain is new since my last surgery. Its a nerve pain that radiates down my legs. It gets worse as the day goes on and the evenings are sometimes unbearable. I've also had problems with nausea, fatigue, and insomnia; all of which are great fun, let me tell you!
My therapist says that I need to start telling people how I really feel. Yes, I'm seeing a therapist. She is helping me to accept and find ways to deal with the fact that I may have this pain the rest of my life. I do really connect well with her, so hopefully she will be able to help me. I don't usually tell people how bad things really are. I figure they don't really want to know, or I don't want them to worry about me.
So, there it is. I told how I'm really doing. Sorry if I sound like 'Debbie Downer' but this is what its like for me.
Heather, Your therapist gave you good advise. Your family and friends need to know how you are feeling so we can try to help you in any way possible. You have courageously followed the latest in medical treatment and it is very disappointing that it has not brought you relief. I am considering what I can do to raise awareness of chiari and help the advance of medical research. Know that you are loved and have many around you who wish to help.
Recovery
I stumbled on your blog by accident. Having undergone a couple surgeries after being hit by a drunk driver I can only encourage you to take it one day at a time and not to allow yourself to lose hope. Your courage is inspirational. Best wishes to you and your family.
Healing Takes Time
Heather ~ so sorry to hear that you are not 100% yett ~ but I am so glad that you are sharing how you really feel. You seem like a really strong person ~ you are making incredible progress considering all you have been through ~ hang in there ~ give yourselve time to have bad days. Hugs ~ Lace
I found your blog through googling, and it's been really eye-opening to read the entries here. I had the Chiari 1 decompression about seven years ago now. I do hope you find a way to get better. I've been seeing a chiropractor recently, and that's helped to fix up a few pains. But he's concentrating on muscles more than bones, i don't want to risk anything getting moved around and squished.
Although, I'd like to say, your scar's stitching looks brilliant, it's barely there at all. Mine's still raised and got the cross-lines from the stitches. Not that I think it's a bad thing; a bloody great scar on the back of your head makes for very interesting conversation.
Heather & Nate - I just came across your site after trying to find the lyrics for "I feel pretty" - gotta love google. Anyway, I just spent the last few minutes reading through your blog - I wish you the best of luck and thank you for taking the time to share your story, youve certainly enlightened me!