I sort of got out of the habit of writing regularly, and I hate it. Fortunately, I was invited to take part in a Carnival blog monthly therefore, I am forced to get back to writing. For those of you that have visited my blog before this blog post is definitely a refresher, but for those that are new I would like to say Welcome! & here is a bit about me and why I write this blog:
I found out I had Arnold Chiari 1 Malformation in October of 2008 when I was 25 years old. This was after an entire year of having a daily, that is right I said daily, migraine. It just started one day, and never left. It took a year to diagnose me because the thing about Chiari is no one knows about it. After my then neurologist diagnosed me she wasn’t all that concerned, nor convinced I needed surgery. Me being the stubborn, assertive person that I am, I went and saw a surgeon anyways. He agreed that I didn’t need immediate surgery however, it was my body and my head so it was my choice. I underwent my decompression surgery in March of 2009. During the surgery my surgeon quickly discovered that my Chiari was a lot worse than the MRI’s showed. He was very glad I opted for the decompression when I did. I felt great for the first 3 months then all my symptoms returned. These symptoms include the migraines, full left sided numbness and a list that is a mile long. Id have to say other than my left side shutting down anytime I do anything physical, my most bizarre symptom is that I cant lay flat. I’m not talking flat on my back I can not lay down without my head being propped up at an incline. I get way too much pressure in my head, and it is hard to breathe if not propped up. The main reason I started this blog was to let my loved ones and friends know what it is like for me on a daily basis. They have a hard time grasping it sometimes, and hear “You just don’t understand” all the time. I’m permanently disabled from my Chiari and I want people to know that every case is different. Just because you hear about someone who had the surgery and is now able to do things like everyone else does not mean that is how it is for me. I also want people to know that my symptoms may change from day to day. I want people to know that it is hard feeling left out, and not being able to be the person you used to be. I want people to know that I am self conscious about the new me, now that I have been diagnosed. It seems like every Chiari patient responds to different medications. It has taken me and my doctors years to figure out what just wont work for my pain ect. . I’ve been on so many different drugs I cant even compile a list. I’ve also tried many things on my own to alleviate my symptoms. Heat and Ice are like my best friends. When I get a really bad migraine I always put ice on my head 1st then take my pain meds. I find myself taking hot baths at least 3 times a week to just relax my muscles. Just recently my Dad has given me some essential oils to try, I haven’t been doing this long so I will have to let you know how it works when I form an opinion. Chiari Sucks! That is just the way it is. Dealing with having it can be down right depressing, but there are things I do to help me keep my spirits up. I attend as many University of Utah events as I possibly can because, they make me feel alive and complete. There are at times that going to a game is the only time I’m happy.
I know that is just a very short introduction to my blog, and who I am. Please feel free to go and read the rest of my posts for a more in depth view of what it is like being a Chiarian. And as always thanks for reading, and I promise I will be back really soon.