First thing this morning I got a call from some airhead at my gastro’s office. She said insurance had denied the Xifaxan antibiotic. She wanted info from me that doesn’t exist. I am now feeling less charitable towards the gut whisperer.


I left for my mammogram and came within inches of being hit by texting drivers TWO times. Very scary 😮 I got to the hospital thanks to TRAX. On the sky bridge connecting the children’s hospital to the main hospital was a kid on some sort of hospital bike. She was smack dab in the middle, impeding traffic, so her dad moved her. She said “That lady is FAT”. Her father tried to hush her, so she screamed at the top of her lungs “But that lady is FAT!!!!!!!” Ummm…thanks, brat. I was able to keep a neutral look and say nothing. What I really wanted to do was run her over.


Every morning when I wake up, my face is fatter and my neck is less distinguishable….plus my hernia is huger. Unbelievable to me, I have been steadily losing weight. That’s because it’s so hard to eat. I am no fan of how I look. I wanted to have some sort of wasting disease before I die…I did not want to get bigger. No one knows more than me how much it sucks to be on steroids. That med has been saving my life and plumping me up for decades. Lately all the rude little kids comment on my hernia or the size of my face. Don’t parents have talks with their kids about what’s appropriate to say in public?


Oh, my gosh! When I stood up for the mammogram, I was wicked bad dizzy. The techs started running around to try to catch me, offer water, etc. I could not even see. Then my left eyelid slammed shut. They were telling me to open my eyes. I calmly explained that I couldn’t because I have myasthenia gravis. Of course, that meant nothing to them. While my boob was squished between the machine’s plates, my phone rang. Not sure who it was, they didn’t leave a message. I only mildly wondered.


Next I went to the bone marrow clinic and got my port flushed. Again, my eyes were rolling all around my head and the 2 people with me were all shook up. I told them I am always dizzy and just had a mammogram…hoping that was a good enough explanation. The guy who did my port access was a newbie to it and was all nervous. He did fine 🙂 I thought I was OK, too. By the time I was in the elevator, my whole neck swelled up huge 😦 I briefly thought about the ER and decided that was stupid and came right home.


When I got to my building, both the pharmacy delivery and the wheelchair company were parked in front of my window. At that point I wondered if the wheelchair guy had been the one to call? I sat near the door, talking to folks, hoping to snag the guy to ask where my wheelchair components are. I saw his back end leaving, but he was too fast for me to catch. He zoomed off.


So, I did the usual, came back to my apartment, put on a nightgown and took a cold shower. Now I am in front of the fan with the A/C blasting, trying to cool down and regain some strength.


Pfffft! The dang gastro’s office just called again. They want me to make another appointment. I’m thinking forget about it. I’m tired of trying to get help for anything. I’m about ready to sign a DNR order and hope the end comes sooner rather than later. I am beyond tired of trying to get better without IVIg. It’s not out of depression, it’s confronting reality. Lately there is no point to most of my medical interventions.


I used to feel strong despite my disabilities. Now I feel like all my systems are unraveling. It isn’t the first time I have thought I was at the end of the line. I have been greatly blessed to heal and continue on. Now I am older and tireder. That hernia is not going to disappear. Ultimately, my life is in God’s hands.