I had a bit of trepidation when I went to my doc appointment this morning. Between last Monday and today, I researched methotrexate and even joined a group special for folks on methotrexate. And…..I made the same decision that I have been making for 20 or 30 years. No way am I willing to take it. I would have to stop taking Motrin and Prilosec, and if I really do have the MTHFR gene mutation, methotrexate would make me sicker. There were dozens of negatives and only one possible positive. Methotrexate might make many of my autoimmune diseases better…..but it would take months to see any difference. Thank goodness the doc wasn’t mad at me. He’s an oddball….a doc who respects me 🙂
The blood test results were back from last week. My hemoglobin and hematocrit have edged up into the normal range! It was probably thanks to eating all that expensive meat last month. But….for the first time I can ever remember, my potassium is too high! I have fought to get my potassium up for years. I still have nightmares about the stupid horse-pill sized potassium logs I used to swallow, then barf right back up. And…my A1c has come down, despite all the steroids.
The doc had a look of wonder when he watched the video showing me lifting my droopy eyes and my voice working. Said he has never seen anything like it. He has no clue what’s going on. I haven’t heard back from the voice doc.
I can still talk today and my eyes have been WIDE open all day. Not a single droop 🙂 When I came out the doc’s office door, I decided this was going to be my one day out of the Medrol dose pack that everything was working and I didn’t feel sick to my stomach…..so I had better do something fun. I got on TRAX and then took the Streetcar to Sugar House.
I visited the duck pond and went to a grocery store for .88/lb tomatoes and 99 cent a box raspberries. After I got off the Streetcar and was trying to get on TRAX, I pushed the handicap ramp button, the lights blinked, but the ramp did not pop out and the door did not open. The train took off 😦 That is the same station that TRAX wouldn’t let me off the train one day. Geeze!
It was a tough day to be in a wheelchair. Everywhere I went today was inaccessible one way or another. I would guess somewhere between 2 and 3 dozen incidents. It made me appreciate downtown SLC more than usual. Not much of the world is set up for wheelchair users. Too much junk on TRAX platforms, telephone poles sprouting up in the middle of sidewalks, no curb cuts, no handicap bathrooms and nowhere to park my chair while I go in….and lots and lots of doors too heavy to open. The worst is both traffic and pedestrians. It’s as if I don’t exist. Scary.
For those of you who get emails from the blog….did you realize I have been posting videos? They don’t show up in the emails, just on the web. Well…..no video today due to technical difficulties. I hope I can figure out what I am doing wrong. I take the videos, but they are not uploading to the chromebook. At least I have pics! I look goofy. I took 3 pics. One I was blinded by the flash and one I look like a deer in the headlights. The goofy one will have to do. You can see that my face works, it’s just kinda crazy :-p