Meniere’s Monitoring App!!

To all of my tech-savy warriors, 

A brilliant new application is available from the UK! It is a monitoring application for Meniere’s symptoms. At this time, it is only available for UK users, but I was told by one of the creators, Jess, that they are working on the making the app available for those in the U.S. I will keep you updated when I hear that the app is available! 

Check out the website: http://www.menieres.org.uk/news/entry/78/new-app-to-monitor-menieres-disease

On Friendship

I know you see a pattern here. Meniere’s Disease effects every face of a sufferer’s life. 

Friendship. 

I have taken enough psychology courses and watched Dr. Phil enough to understand that we, as humans, learn who we are by seeing a reflection of ourselves in our friends. My first three years of college I knew exactly who I was. I was constantly surrounded by my best girl friends. I knew who I was because I was looking into the eyes of women who reflected who I was through their eyes. 

I don’t live in a world of fantasy. I understand that we all grow up and move on. My best friends are scattered. One is in southern Minnesota, one is in Milwaukee, WI, one is in California. These are the three people who know exactly who and what I am. They understand the juxtaposition that is my life – the little girl that is bright-eyed, fearful and the warrior who is brave, angry. They have seen my monster.

Seeing my monster is a double-edged sword for friendships. A wonderful gent in my support group said it best. At times we make our friends nervous and frustrated. They invite us out to do things and we say no so many times that they eventually stop asking. I was asked to be involved in one of my best friends weddings. It was right before my surgery. I wanted to be more involved, I wanted to stand next to her like we had always promised to do. But I understand that she knew I couldn’t be there for her in the way she needed me to be. I was angry about that for a long time. To say it still doesn’t hurt would be a lie, but I understand that she knows my monster to know that it will always have to be more important. To admit that feels like a failure. I sat in a pew and watched her say her vows. I should have been next to her.

One of my best friends recently got a promotion at work. A healthy friend could jump in the car and go congratulate and celebrate with her. All I could do is text her. She has to drive five hours to visit me. I know the financial burden is immense. I can’t drive to her. That makes me incredibly angry!! 

Being my friend comes with a price. Friendship shouldn’t have a cost, but with me it does. I know that I have these friends to reach out to on bad days. I don’t because I don’t want to bring them down. To them I probably seem cold or don’t reach out. This is the double edged sword I was talking about. They have seen the monster. They just expect me to not be able to do things, they just expect that I can’t jump in the car and be with them. 

Meniere’s Disease is a lonely reality. Don’t get me wrong, I have an amazing support system. Matt is here for me all the time, my parents and Matt’s parents are always here for me, my support group is some of the most amazing people I have ever met. There is just something unique to friendships. Remove the romance, remove the obligation, remove the pity. When you take away relationships fueled by those constructs you have friendships. 

So here it is, here is my apology to my three best girl friends. I wish that I could be what you need. I wish I could travel to where you are. I wish I could forgive myself enough to reach out more. Thank you for picking up the slack in our relationships. Kara, you have spent more time driving/flying to see me then anyone else has and I love you to the moon for that. 

Everyone with Meniere’s Disease feels alone. Just remember that no matter how far away we are, I consider all of you a friend and you can always reach out to me. meniereswarrior@gmail.com