Back to the grind…

Hello lovely people, how are you doing? I really hope everyone got to enjoy their weekend as much as I enjoyed mine. All I wanted to do was rest, rest, rest and that’s exactly what I did. There were the few exercises and stretches here and there that my PT had asked me to do, but nothing too strenuous. I was also happy to be surrounded by my family and close friends who came to visit, catch up with them on the latest happenings in their lives and for a bit just forget about something called dermatomyositis. Overall, I’m happy to report that it was a great weekend of rest and recuperation from last week and I was ready to start this week’s back-to-back-to-back appointments.

Today is Sunday June 18, 2023. I was awake by 4:50 am, dressed and ready by 6:40 and arrived at my appointment by 6:55. First up for the day was my Electromyography (EMG) appointment at Ibn Sina Hospital. EMG is a diagnostic procedure to assess the health of muscles and the nerve cells that control them. Nerves send out electrical signals to make your muscles react in certain ways. As your muscles react, they give off these signals, which can then be measured. During a needle EMG, a needle electrode inserted directly into a muscle records the electrical activity in that muscle. EMG measures the electrical activity of the muscle during rest, slight contraction and forceful contraction. Now that we’re done with the science lesson, let me explain to you what happened when I arrived today. I had actually done my first ever EMG on Thursday, May 11, a day after my rheumatologist had initially diagnosed me. She asked me to go get this test done to confirm her diagnosis of dermatomyositis, which it did. Today’s scheduled appointment was my follow-up from that day and my doctor has asked me last Thursday to try to get it done soon for us to see any changes in my muscles from back then to today. So it was great that I already had this appointment on the calendar, just in time. Yet the timing wasn’t exactly right…the EMG doctor today was the same one who had conducted the test for me back in May. After hearing what happened to me since he last saw me, he preferred to wait another month to see more accurate results after longer time on my treatment. He said conducting the test today might not show much variation, or better yet, accurate results that we’re looking for. So…see you again July 17 Ibn Sina Hospital.

Next we headed to my new ‘home-away-from home’, Amiri Hospital! Time for my bi-weekly bloodwork to see what levels we’ve reached. The process took a little longer today than it usually does because my doctor had asked for some extra bloodwork that needed some administerial processing and stamping. Luckily we finished just in time to head to the next scheduled appointment…

PMR! We arrived at the Physical Medicine & Rehabilitation Centre at 9:45 and after a little chaos and confusion we were able to find the right person who took me to meet my newly assigned physical therapist. As has been the case with all the doctors so far on my journey, I was blessed with yet another fantastic doctor. الف الحمد لله. It was only the first day, but I felt very comfortable and confident in her care. She wanted to hear my story…from the very beginning. So that took almost an hour of explaining every single thing that has happened to me since I got COVID back in October. As you can imagine, repeating my story to doctors over and over has been exhausting to say the least…but I’ve gotten so used to saying it that it’s become a part of me and it comes out comfortably somehow. It’s a strange thing. So, back to my PT and our session together…After explaining my story, she conducted a physical assessment of my muscles and we ended the session with a couple of exercises. As I had previously mentioned, I’m part of the daily care program for the next two months. I’m hoping and praying to see great results and I’ll be sure to keep you posted. I was told the occupational therapy team would see me tomorrow as they didn’t get a chance to meet me today. I’m ok with that…I did quite a lot today.

During my PT session, my rheumatologist called me to discuss the results of today’s bloodwork. She asked me to call her back when I was done at PMR which I was eagerly waiting to do. The second she answered and I heard her tone, a wave a relief washed over me…My CK levels are continuing to go down and I couldn’t be happier to hear that news. My protein and potassium levels have stabilized also so yay! We will continue with the weekly gradual tapering down of my cortisone medication and hopefully we’ll have some more good news with Thursday’s bloodwork.

That’s my daily update…stay tuned for more to come tomorrow, and the next day, and the next day…

ألف الحمد لله, ألف الحمد لله, ألف الحمد لله.