Today’s Headliner…Nutrition

Today is June 22, 2023 and it’s finally Thursday! I actually fell asleep a little later than usual last night so although it was yet another night of interrupted sleep, my alarm actually woke me up at 6:00 am! It was a strange feeling to wake up to my alarm ringing (this hasn’t happened in a while) and to see that it wasn’t 5:00 something or even earlier. It was a quick process of having my breakfast and getting ready for the day and by 7:20 I was on my way to Amiri Hospital. First up, my bi-weekly bloodwork to check my levels. I headed to the laboratory, and went through the steps that have become second nature to me at this point. The great thing is I’m usually the first one there for the day so I’m in and out in no time. By 7:40 I headed to my next appointment in Amiri, my OPD nutrition follow up….

Due to a little miscommunication regarding my appointment time we had to wait a little bit before the doctor was called to come see me. The doctor arrived at 8:45 and we went straight to her office. Who can guess how I felt about her? You’re absolutely right…She was great! She was also the first doctor I meet on my journey that doesn’t ask me to tell her my story from the beginning…What a relief! She hadn’t heard of dermatomyositis before but she was very confident in her plan moving forward for me and my case. As dermatomyositis is an autoimmune disease, the role of nutrition can really help in controlling any pain and inflammation, slowing the progression of the disease, and help in boosting my immune system. Before talking about my nutritional requirements, I got on a body composition analyzer (shown above in the center). This machine breaks down weight into body compartments such as fat mass and fat-free mass, body water, and skeletal muscle mass. In my case, the focus was on my muscle mass because of my muscle atrophy causing muscle mass loss. The analyzer confirmed that my skeletal muscle mass all over my body was lower than the normal ‘low range’. So…my nutritionist’s focus in terms of my meal plan going forward is first protein, then protein, and then more protein. I was very happy listening to her breakdown everything for me, answer all my questions, but above all make me feel completely confident in her approach to my nutritional requirements.

By 9:45 I was back in the car and on my way to PMR for my back-to-back appointments. First up, physio…We started with a balance exercise which when I completed confirmed that I thankfully don’t have any balance issues. Next we moved on to the lower leg movements we’ve been working on to strength my quads, the largest and currently weakest muscles for me. The session went faster than expected, in a good way, and we ended with her explaining my homework exercises for the weekend.

Before starting occupational therapy, my OT came to pick me up from the physio room and while both my therapists where there together they discussed my case and how the tension in my muscles is way too high. They both worked together to perform deep stretches on my lower body (that were initially super painful for me) but helped to release a lot of the tension in my muscles. They kept saying ‘No pain, no gain!’ and they were so right. I felt so much better when all the deep stretching was over. After that we headed to the OT room where we continued with more stretching but concentrating on my upper body this time. We also spent some time stretching the teeny tiny muscles in my fingers. It was extremely painful but so rewarding because I was finally finally finally able to fully press my palms together in prayer position without having my fingers curl up! Milestone.

We ended the day at 12:10 and I was really ready to go home, unwind and enjoy the weekend ahead. As soon as I got home, my rheumatologist called me with the wonderful news regarding my bloodwork that morning…CK levels are continuing to go down! ألف الحمد لله. The liver enzymes are also decreasing which is great…the potassium is slightly back down again but my nutritionist is already on it and told me to drink lots of fresh coconut water for now, until her meal plan is ready for me. In the meantime, I won’t forget to work on my weekend homework from my PT and my OT but that’s the only work I plan on doing! Enjoy your weekend everyone.

سبحانك يا رب، اسمُك خير اسم، وذكرُك شفاءٌ للسُقم، حبُك راحةٌ للرّوح، فضلُكَ لا يحصى بعدِّ أو عِلم.