October 19 - Day 50

"Where is my bag of needles?" 

This quirky statement by Dr. Johnson, today, basically sums up my day at the study. I wish I could report the findings from the EMG (the test where he inserts a needle into my calf muscle 20 times to measure the electricity and mytonia in the muscle). I can't reveal anything about that or anything that happened during the 2 hours of PT I did this morning. However, I can tell you that the muscle biopsy still hurt, even if the doctor didn't hit a nerve. 

I'm thankful that Susan, the study coordinator, tried to distract me by talking about my kids' Halloween costumes and my new house in Tucson and let me squeeze her hand during the particularly painful parts of the biopsy.

Day 50-  it's a huge milestone in this study. I've been to Salt Lake City 9 times now. I have received either dosing of a drug (or placebo) that's been coursing through my veins for 50 days and has left significant bruises on my stomach and thighs. 

My flight left at 7:30 this morning and I'm back at the airport, waiting to return home. Today, I didn't receive any injections. I have to come two more times, once in November and once in January. I'm happy to be able to have my life regain some normalcy. 

Since I'm done receiving dosing, I was able to give some feedback on the study. I have a few recommendations for the future, but I really am not allowed to mention those either because of the impact those suggestions can have on future studies. 

I wish I had more to report. I am eternally grateful to my husband and my parents for taking care of those kiddos for me. I could not have done this without their help and if anyone, who is affected by this study, is reading this, I hope they say a quick prayer of gratitude to those amazing people, who have made it possible for me to participate in this trial.

I'm going to go home and move to Tucson in 4 days. My "to do" list is getting done. The movers will still arrive tomorrow, they will still move us to Tucson on Wednesday, the cleaners will still come Thursday and everything will work out. I will hopefully report more in a month. 

By the way, Salt Lake City is pretty easy on the eyes on this colorful, crisp Autumn day. :)