I haven’t heard back from several doctor offices, so I started making phone calls. Insert a thousand screams here. Every number given to me is wrong, then I am shuffled from receptionist to receptionist. So far in the process of being transferred, I was dropped/hung up on twice. Each time I get to what should be the pot of gold at the end of the rainbow, I get voicemail. Insert another thousand screams!

I finally got one woman who made appointments for my pulmonologist and my rheumatologist. Both are for December 😦 The hematologist office is elusive. Even people who work in that department have no idea what the number is to schedule appointments.

I dragged out dozens of medical records clearly stating that I have myasthenia gravis and was getting IVIg to treat it. I am supposed to fax those to my GYN surgeon’s nurse who is supposed to fax them to a sympathetic person in neurology, in an effort to get me an appointment, even though it has been forbidden by the higher ups. Insert a bazillion screams!!! I don’t understand how this medical group can get away with not seeing me and not treating me.

To compound my frustration, I called the MDA for the bazillionth time. They STILL don’t have my records. Ever since I moved here, I have been trying to get them. Each time I am told how incredibly easy it is and they will call me back “tomorrow”. It never happens. Before I gave them my name, I acted like I was a new client. They confirmed I have to have an MG diagnosis to be seen. I had that documentation sent years ago from the VT and FL MDA clinic neuros. Those neurologists then gave me years of IVIg. I don’t understand how this can be so messed up on so many levels.


Well, I slogged through the snow in my power chair to go to the park for food. The chair slid off the sidewalk and into the grass. I had to get up and drag the pesky little wheels back onto the sidewalk. Big mistake…but there wasn’t a soul in sight 😦 I then went around the corner to the Boing! house. Nobody picked up food from anywhere and we were sent home.

I went to Trader Joe’s for strawberries and across the street to Smith’s for cream cheese and vegetables. I lucked out. I got three bags of organic vegetables for .99 each. I steamed the bag of broccoli , cauliflower and carrots for my lunch. I shredded cheddar, Parmesan, and jack cheeses to go with the veggies.


After lunch I went around and around and around with the MDA and doctor offices. Very predictable. Between the pain from my belly and crazy frustration, I ended up in tears. I have tried finding a case worker to help me , but no such luck.

When I woke up this morning, I stretched. My hernia rose up like a mountain from the right side of my belly. Just now I moved in my chair and it happened again. All day the hernia has hurt worse than ever. It’s scaring me 😦


When the sun was out, the snow melted some. The trees were bright 🙂