Short Short Week!

Today is Monday, June 26, 2023 and tomorrow starts the 6-day Eid Al-Adha holiday break. I had a few appointments to get through today but it was nothing I couldn’t handle. Although I had a good night’s sleep, something I haven’t had in a while, I still woke up a little fatigued today. It was probably from the hydro pool work out yesterday…my PT told me that I would feel a little more soreness today as we worked some muscles differently in the water. In any case, I got ready for the day and headed to my first appointment at Amiri Hospital, bloodwork. As I had mentioned before, my doctor (and I, and everyone around me) is super happy that my CK levels keep going down. So based on the continuous decrease she’s seeing, she recommended that my bloodwork is done once a week at this point. Woohoo! Less needles poking me! We arrived around 8:30, went straight to the laboratory, got my blood drawn then had some time to kill before my next appointment.

We decided to use that time to collect reports of various tests I had done during and post-hospital stay. Last week we had collected three of those reports – the heart echo, the chest CT Scan and the abdomen ultra sound I had done during my hospital stay. Today we picked up the reports for the heart Holter monitor I had worn for 24-hours during my hospital stay, the knee x-ray that was taken when I had my fall during my hospital stay (we’ll get to that in a bit), and last, the pelvic and abdomen CT Scan I had done last week. So back to the fall I had mentioned…by week 3 in the hospital I had noticed that my lower body muscles were getting weaker and weaker, day by day. It was becoming harder to get up from a sitting position and my movement around the room lessened as my muscles felt more fatigued. At this point I had actually lost about 4 kg of muscles mass and it was noticeable. It wasn’t a good feeling. I had mentioned this to my doctors and they told me that this was normal because of my condition and because of the amount of cortisone I was on. As demoralizing as it was for me, my doctors assured me that with some time I will regain my muscles and build up my strength once again. Unfortunately on June 4, because of the on-going weakening in my leg muscles and a little imbalance, I fell abruptly on my knees in the hospital restroom and it was one of the scariest shocks that I had ever experienced. With dermatomyositis, it’s common that one is unable to get up from a from a fall because of their weakened muscles…and that’s exactly what happened to me. I was super lucky that my husband was in my room at that time so after screaming his name out loud for help, he rushed in, saw me on the floor and carefully helped me up and on to a chair. At the time, I was so disturbed and traumatized by what happened that all I could do was cry. Thankfully my physical therapist then, and my rheumatologist both came immediately to my room, did a quick physical examination then requested for an x-ray just to be on the safe side. They really calmed me down and comforted me at a time when my emotional state was all over the place. As soon as the results were out that day a wave of relief washed over me. الحمد لله. I’ve said this before and I will continue to say it, please don’t take your health for granted…ever.

Back to today’s appointments…next up PMR. When I arrived I was informed that my OT wasn’t going to be able to make it to today’s session so my PT decided to give me a little extra time during her session with me…lucky me! We were supposed to continue with another session of swimming today but I explained my soreness and fatigue today and she agreed it’s best we continue with swimming after the holiday. We started with our usual strength building exercises then added a couple of new challenging moves to the mix. Towards the end of our session she used a deep oscillation machine on my arms and shoulders to release the muscle tension and ease the pain. It felt amazing!

On another great note, my bloodwork results came out and although it’s a slight decrease, my CK levels are still continuing to go down! ألف الحمد لله. I’m excited to start this holiday on this positive note and I hope I continue feeling good. I do have my PT and OT daily exercises to work on, with one or two appointments here and there but we’ll deal with those later. For now, have a wonderful day and the updates will come in due time.

العافية اذا دامت جهلت, واذا فقدت عرفت, فأشكروا الله دائما على كل شيء.