Sunday, 14 February 2016


I am sitting here anxiously waiting for Anna to come home. We try and let her live her life as normally as possible but sometimes it's very scary letting her go out when I am never sure if she's going to be ok. She went to Vancouver with a friend to do some shopping today. She texted me about an hour ago saying she didn't feel very well and she had been sitting on a chair in the mall for about an hour because she had no strength or no energy. Thankfully, her ride was coming to pick her and her friend up and drive them back to Chilliwack, but my heart is in my throat as I wait. I think one of my biggest fears is that Anna will have one of her episodes when I am not close by or she is with people who don't understand what is happening. I spoke with a lovely lady about a month ago and she spoke very wise words. She said at some point, you just have to trust that she is in God's hands and what will happen, will happen. So I will sit here and type away praying and trusting that she will be fine.
I'll go back to my previous post. I made a Dr's appointment to discuss dysautonomia with my family physician. My goal of the appointment was to try and find someone, anyone, that was local who had any understanding of this diagnosis. I also really wanted Anna to go back and do the stress test on the treadmill. I felt like I couldn't rest easy until that was done. I walked into the appointment with some hope. I sat down in the room and waited for the Dr. The door opened, and in walked a resident Dr. (He was amazing) Anyways, he sat down and asked what he could do for me. I explained that what I really wanted was to speak with a Dr locally who had some knowledge about dysautonomia. I explained that we felt a little bit alone trying to figure this all out and what steps we should take. He was very kind, but he looked at me and said that I would be lucky to find a Dr in all of Western Canada that could help. Once again, I felt like I was punched in the gut. The roadblocks seemed endless. We spoke for quite a while then my Dr came into the room as well. I explained my frustration. He was really good and agreed that Anna should complete the stress test. He said he would get in touch with Children's and get the appointment set up. I left the office encouraged that she would get the stress test done, but discouraged that I couldn't seem to find any answers. I wasn't ready to believe that there was nothing that could be done. So the fight continues.
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Laying in the hospital bed

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Laying in the hospital once again after being taken there by ambulance.

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Picture on the left is of course, children's! The one on the right is during one of her episodes. She is laying on the kitchen floor unable to move and  her hands etc are seized up. This one lasted almost an hour.

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