All we can do is keep breathing

Charlie and his new flamingo toy

It's been a long month. To be honest, it's been an emotional roller coaster of a month. I find myself randomly crying, and fainting, and laughing. Charlie always makes me laugh.

I'm still hurting over my Grandma passing away, and the fact that we weren't there when she died. I know it's unreasonable and unrealistic, but it's there in my mind.

I've recently seen a neurologist and had an MRI and an MRA. (The most expensive pictures of me that have ever been taken!) I go to see him again tomorrow to hear what he sees going on with my brain. I've been really angry and sad this month regarding health. I know it comes in doses, and I will have renewed perspective and resolve possibly even tomorrow. Right now I just want to take my body off and get a respite from it.

The neurologist said he doesn't understand why no one has mentioned Marfan syndrome to me, because I have long limbs, skinny wrists and chronic pain paired with flexibility. So now yet another rare thing is possibly wrong with me. Russian roulette: EDS, Sticklers, Marfan.  

My insurance sucks. It's better than not having any, that's for dang sure, because I've been there, and that's why I lived with all this crap without seeing doctors for 5 years. Still, they want almost a thousand dollars upfront before they will run an EEG on my heart to help hunt why I keep passing out.

Yesterday I had a scare in public. I was alone, Charlie was training and I was on my lunch break at work. I went to a smoothie shop I tend to frequent when I have spare change and the shakes, because they use real fruit and veg paired with turbinado sugar. I digress. I fainted in the shop. I think if they didn't know me, I could have been robbed by a stranger, or had another ambulance called. I was super hot and flushed red. 90 degrees apparently is too hot for me to be out in now. I have these handy ammonia bars that you snap in half, and the smell reaches me even when I'm out. It's like a lifeline that guides me back through the void. It's a nasty lifeline, because it smells like cat pee, but it's a help.

My primary care physician quit on me. I have to start the hunt for a replacement now. I have an appointment on Friday to check out a new possible doc. I'm going to hit her with everything I have and see if I scare her, or if she's willing to deal with a patient that's a bit knowledgeable and frustrated with the journey.

I have had some great support this month from family and friends though! My parents have been a rock for me, and my mother in law sent me some cash support to help pay for the extra health cost. My friends Janelle, Leah, Rachel, Sam, Monica and Hollee have been amazing support too. Constantly bringing me out of my self made shell of protection made from the emotional equivalent of tissue paper and barbed wire. Thank you for being my friends. Your love is true and so much more helpful than any medication or medical help I can get. I love you!

Matthew and Stephanie, thank you for coming to our place and keeping me company. It was so nice to have a weekend away from my version of reality - to just chat and watch BBC comedy together, and to play with the pets. I love you both.