Another spill

Today at work I took a spill.

Let me set the scene for you. Mmmmm in one hand a delicous bowl of oatmeal I just made and in the other hand a hot,full, cup of water for my tea. I get two rows away from my cube and my body goes. The legs and arms stop working. I fall so hard that my ankel twists and I scrape up my ankel pretty bad. Worse yet I try to get up but my body still isn't working. Lying in the middle of the walkway with oatmeal and water thrown everywhere I try a third attepmt to get up and am successful. I am so embarrased and mad that I am shaking. I pick up what's left of my bowl of oatmeal and my 1/2 full glass of water and bring them to my cube. The whole time I am looking around praying no one saw. I don't really want people,who don't know me at work, to find out about my Chiari because...I don't want the label of "The girl who is sick and falls down". I go back to the spill scene and start to clean up the oatmeal. Make it back to my cube after the clean up. I was still mad when I sat down but after some kind and encouraging from Roberto and Lindsey I felt better.I can laugh about it now but it is so hard to loose control of your body. I feel helpless when it happens.

One breath at a time. I can't do anything but try to live with it now and I'm not going to let it beat me. So I chose to be in a better mood today. Even if my symptoms are kicking my butt I can still choose to try to be in a good mood. (Nip tuck is on tonight!! Woohoo! Who can be in a bad mood with that on tonight?! :) )

-AP

Beat it or let it beat me.

I had a heart to heart with Roberto yesterday. He is good at telling me how it is but not hurting my feelings with it. He was encouraging me to take the hard stuff in stride because there is so much good in and around me. So now I am trying to put that in play. Yeah, I have this bad stuff going on but I need to try and find the good and focus on that.

The good and not just that I have several great people around me to encourage me but other things unrelated to my health problems. Like, I have a new job that I just started and I really enjoy it. I look forward to starting training soon. Halloween is almost here and I am looking forward to that. Then a whole bunch of holidays come! That means family and friends and celebrating! I am still able to go out...just in more mellow short bursts. Lots of things left to enjoy! And this won't be forever even if it's hard now. It's not forever.

The word I hear that most often describe me is "Bubbly". I am going to have to keep on being positive...just to remember my boundaries and limitations and work within that. Even though there are things that are hard for me or that I can't do any more, I have to remember that if the other doctors agree with Dr.F then the decompression surgery might fix it all to where I won't have symptoms anymore and I can go back doing what I do with out these current limitations.

Basically, I'm not going to let it beat me...I can beat it!! Let's keep positive! Woohoo!!


PS. Thanks for going to the show with me Caroline!!! It was great!!

-AP

No...not crazy.

This morning I watched the Extreme Makeover Home Edition About the Carter family. It was emotional as the show tends to be. But this time it really hit home for me. To hear what they have gone through it really helps to know that I'm not crazy or alone.

So many times people have asked me, "Well are you sure you aren't creating this in your head?" or "Maybe you should stop researching this for a while and see if any thing feels better." . All of these comments hurt and are frustrating. How do you explain to people that you hurt so much and the symptoms that you feel that just keep getting worse are not in your head. I remember questioning myself and thinking, "Maybe I am making this all up. Maybe they are right. Maybe it is all in my head." I stopped reading about Chiari on the internet and even tried to stop talking about it. I still hurt and my stress level went up which made me hurt more.

NO!! It is not in my head! No, I am not making up symptoms! I don't know why it all started and why it is progressing like it is but it is.

-AP

Filling you in...

At the end of July I was getting a hug before leaving for work and when I was released from the hug I didn't have control of my arms or legs and I fell to the floor. After a few moments had passed I regained control. Around this same time I began getting headaches and neck pain which I attributed to the stress of my job and sitting in front of a computer all day. About 3 weeks later I had another drop attack at home. The headaches and neck pain became more frequent. What finally got me convinced to go get checked out was I had a drop attack at work soon after. I was embarrassed and frusterated. "What is wrong with me?" I thought. I have played this question over and over in my head. As I was checking into the urgent care they stated that they would put me at the top of the list. I felt so bad for the little runny nose babies waiting to be seen as well that I was thrown in front of them in line.The urgent care doctor told me that she didn't find anything wrong with me and to stop sitting on my feet. She also advised me to see a regular MD and be checked out for MS. Two weeks go by and I go in to see an MD about being tested for MS. This doctor requested an MRI which I promptly schedualed and went in for. Three days after my MRI I received a call with the results. "Hello Amanda? Hi, I just am calling with your MRI results. We have determined you don't have MS." I breathed a sigh of relief. Before I could get too comfortable with that answer the voice on the other line added. "But you do have Chiari Malformation." She went on to spew some medical terms which I didn't understand. So basically she told me the diagnosis and spelled it for me and that was the end of the conversation. I didn't know what to do. I did the only thing I knew to do when I don't know or understand. Yup, scour the internet for answers. I found a ton of information. Lots of which scared the hell out of me. They did schedule one more MRI to determine if I had a Syrinx, which I am fortunate enough to not have. But they didn't tell me what to do next. I battled with nurses and schedualers to try to be seen by a neurologist so I could have a consult and begin trying to fix me. After calling every day for a week and a half I had an apointment. Since then I have had several more drop attacks and more menacing symptoms. I began having these bad headaches, extreme fatigue, head and neck pain, I feel dizzy often, and have trouble getting my eyes to focus. My limbs also feel tingly and numb on occasion.Today I had my second appointment with Dr.F,my first neurologist. After a second consult and reviewing my EEG, MRA, and all three of my MRI's he determined that my symptoms were not from seizures or blood vessel problems and that in his professional opinion it was in fact the Chiari causing my symptoms and the surgery would be the only treatment to correct it.Being a good doctor he also encouraged me to receive a second opinion and speak to a neurosurgeon.

Dr.F's nurse is coordinating with Mayo Clinic to to get me in to a neurologist and a neurosurgeon to get additional opinions. So that's where I'm at. Waiting. Taking it breath by breath.

-AP