Hi,

I'm sorry for what you are going through. It's awful that you are not getting the help you need. My neuro is a headache specialist and I really have my general MD to thank. She is an advocate for me and knows her limitations. She is always quick to refer me out if she can't handle what I'm dealing with, and has a great arsenal of referrals.

Are you taking any medications for any of your symptoms?

I have really limited my calendar ever since this happened. I know my limitations, and have scaled everything back. Anything that I do outside of my house is a choice. When I make that choice, I know that I'm going to deal with the aftermath. So, I just have to decide what's worth feeling like garbage for as long as I take to get back to "normal".

My sister is getting married in less than 2 weeks, and I am her maid of honor. I am doing what I have to do for her, and I don't leave the house otherwise unless it's for a dr. appt. My husband, 2 kids and I have season tickets to the Bills this year, and we're selling them off week by week, because I can't handle going to the games. We tried to go to a preseason game and I was throwing up by the end of the 1st quarter.

You are right- SO FRUSTRATING!

I used to be quite the social girl, but now I find myself saying no and losing friends one by one. My husband apparently spoke to my kids and explained how being around Mommy has to be like being in the library. What's amazing is my 5 and 7 year old get it. They forget and make mistakes, but they are so understanding about why I can't do things and go places.

I'm very lucky that my husband is so amazing. I also come equipped with a church family that is amazing. Someone makes a dinner for my family once a week to give us a break. My extended family is all in the area, and they help me by taking the kids out for fun things. God has certainly given me the tools I need to get through what I'm going through.

It still sucks that I can't be the one to take my kids to do fun things, or cook a nice meal for my family, but I'm learning how to take the backseat and enjoy doing the things that I can do with them. I have become a much more humble person because of all this.

I'm glad to share with you and I'm glad you shared with me! Until a few days ago I felt so alone in all this! It's really nice to vent and share in this community!

Good luck! Keep me posted.