I got this letter today that just sent me 20 years into the future.Because that's how I look at some of these letters and how I talk to people older than me that either won't take drugs, or are just happy with the madness they are living in. But people just keep on living. Keep on going. I don't know if I'm ever going to "fit into any place" because I see myself as totally reclusive and should have this happy little brain with a happy little life and a happy little house when most people (like me) live on disabilty we don't have resources to make our lives better- to make life seem like the joy is there even though you know what tomorrow will bring.

Hope. That's all we have is hope. This lady- all she has is hope and someone on the other end just willing to listen to what she has to say because she's felt so different all her life, and been told the same things over and over, so I don't know how to gauge her symptoms, or how her suffering has changed so much worse than mine.


  I wondered if you have heard about people with arachnoid cysts having periods of time when they feel sick. Nauseous, cold, can't eat (makes you feel worse), headache, lethargic.

I have had two surgeries, one in 2003 and another in 2013 for a programmable valve, which is almost completely open.  Since the new surgery I have had three of these episodes and a stroke like incident of slurred speech, with a numb curled up hand. They still haven't found a reason that caused the stroke.

I've been very ill for the last 5 days, and even water is hard to stomach.

All the MRI's on my cyst and shunt look like the most recent surgery helped but I'm still having problems.  The cyst is very large and has pushed my brain over 3/4 of an inch.

They wanted to do a craniotomy and fenestrate the cyst, and let it drain into my brain but I've had quite a few surgeries in the past two years and didn't want to do it.

I'm disabled from a back accident and 4 spinal fusions, have Rhumatoid Arthritis, autoimmune thyroid and a bad knee that needs replacing, and this cyst makes me sick about 60 days a year. Wish I knew what to do. I'm 62 and they only found it when I was 51. Had symptoms since I was 20.

Thanks
Mary Ann


What do you say to someone like that? I'm at a loss. This is my most hopeless moment, hearing stories such as these. This is one of the reasons I am not ready to advocate bringing the life of a child with this affliction into this planet quite yet. To be an elderly guinea pig is tragic. I've felt like one since I became aware of my mother holding that wash cloth over my head, and screaming about all the blood (and I knew blood was bad but hitting the wall on I-71 without a seat belt?, that's a lot of blood) with momma screaming at dad in the ER for driving on bald tires, that's what I remember from that visit. 

Some doors were never meant to be open while others should have never stayed closed. And the ones that you can't get to open or shut always have an air about them that seeps into your consciousness, trying to make you a better person but just won't. Nothing will.