Seriously, are you bleeping kidding me? How much more can a person take???
I have been having issues ever since my car accident (2 years ago); neck pain, back pain, shaking arms, etc. I'm not healing like the doctors said I should. So..... we did another MRI on my neck. I hear nothing from the doctors for a week and then the nurse calls me with the news. The radiologist said I have chiari-malformation.
Actually, it wasn't as clear as that. Let me set the stage for you. Eric and I just arrived at a local restaurant where we were going to have dinner. Eric was going to eat what ever his heart desired. Me on the other hand was lucky enough to be able to have something at all I could eat, scrambled eggs (but at least they weren't radioactive). As we are ready to go inside my phone rings, it's my doctor's office. I had to get this. The nurse said there were changes to the MRI.
I'm hoping the changes were good news. The disk bulges I had went down. So of course I am hoping for good news. Then the nurse says the radiologist discovered that you have kari, chari, cheeare malformation. I look over at Eric and he goes "Oh bleep. Are you kidding?" I was confused? He knew what it was, but I still couldn't comprehend what she was saying. Eric whispered to me what I had. Immediately after he said it I knew what it was.
Great, how am I going to get treated for this if they didn't know what the disease was. So, how did I know what the disease was? My cousin was diagnosed with it. She had brain decompression and now she is better. It sounds easy, right? They didn't diagnose her right away and they refused to do the surgery until she was really really really REALLY bad. So, yes I am scared that my chiari-malformation is going to get worse before they do anything to help me with it. (pronounced Key-AR-ee)
So, what exactly is chiari-malformation? Well, the technical definition is the lower part of the brain, called the cerebellar tonsil, herniates down through the skull and into the spinal canal. The herniated tissue blocks the normal flow of cerebrospinal fluid. So, definition I like to give and makes it more visual for people is that my brain is falling out of my head.
Seriously??? I haven't even figured out how to deal with the new diagnosis of gastroparesis, and now I'm being told I have another rare disease? 0.1% of people have this disease? Really, I have always joked with my niece regarding being different. That being different was good, it meant that I wasn't like everyone else. But I didn't want to be this different. Different for this diagnosis is not good. Really, I have ALWAYS been different, and right now I just want to know what it's like to feel not different.
So, what exactly is going through my head? I've talked to Eric and he said he doesn't feel like I've gone through the stages of grief for either of these diagnosis, chiari or gastroparesis. We even talked about it at my therapist. I eat what I'm "supposed" to and I still get sick. I sleep as much as possible to avoid having to eat. I don't go to the gym right now because I'm afraid I'll get sick while exercising and I won't be able to make it to a bathroom. My life has done another 360 degrees and I'm acting like there isn't anything wrong with me. I do what I am supposed to do. I make the appointments to the neurosurgeon like they tell me. I'm moving through the motions to just survive right now. I do everything I am supposed to do, and what happens.....
I let go of my diabetes. So, apparently I'm not doing good with these diagnosis. I am eating all the time. I am always full, but I know if I don't eat I won't get any nutrients in me. My blood sugar is constantly low, but then there are days when the sugars are high! It just is so frustrating. I'm at a point where I just don't understand why? Why did it all come on at once? Why did it happen after I decided to take care of myself? I was doing good with my diabetes. I had a diet where we were able to schedule my pump according to what I was eating.... and now it's all different! It seems like instead of taking two steps forward and one step back, I'm taking one step forward and ten steps back.
Have I ever mentioned how much I hate change. Well if I haven't.... I HATE CHANGE!
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