Adios PMR!

Today is Thursday, August 24, 2023 and I had quite a busy morning. We had an early start and Yasmine joined me for all my appointments. We were out of the house at 7:15 am, arrived at Amiri at 7:35 and went straight to the laboratory for my bloodwork. We were in and out of there in 10 minutes max then went to the sixth floor to see my rheumatologist. She came to her office at 8:00 and was happy to see me looking and feeling good compared to the last time she saw me. Honestly, this week I’ve been feeling better than I usually do so ألف الحمد لله. She told me that starting next week I’ll be reducing my cortisone medication to 5 mg but that I’ll be staying on this dose for another month while we keep monitoring my CK, LFT and RFT levels, as well as seeing how my body physically feels on this dose. If all is well and my body is responding well to that then the month after that will still be 5 mg but taken only every other day…Again, we’ll keep monitoring and seeing how my body responds to that and adjust accordingly. She wanted to check my ferritin and iron levels so she asked me to go back down to the lab and do another blood test for that. Before doing that though, I had to go down to the first floor for my next appointment at 8:30 with my nutritionist.

My last appointment with my nutritionist was three weeks ago, right after the time I was sick from the virus I had gotten. If you remember, my muscle mass had decreased to slightly below when I had initially started seeing her back in June. I was really disappointed when this happened but I knew that things would be fluctuating in the beginning so I had to just accept it and move on. Since that appointment I’ve been really committed and dedicated to my daily workouts and increasing my protein intake so I was really hoping for some good news today. When I got on the body composition analyzer both her and I were holding our breaths and praying to see good results…And we did! Yay! My muscle mass has increased slightly from last time…At least we’re moving in the right direction again. Although both my arm and my torso muscles are still below the low range, my legs have now increased to the low range. So that’s something! I told her that I’ve tried to increase my protein intake through my food and the supplements but there were a couple of days that I felt so stuffed that I couldn’t reach the level of protein intake we’re aiming for. She prescribed a new protein supplement that I could use while out and about instead of carrying my protein powder with me…They’re sachets that I mix into any liquid and they provide 15 grams of protein. My next appointment with her will be in 4 weeks and in the meantime I need to maintain the high protein intake I’ve been on. Before leaving Amiri Hospital we headed back down to the lab where I did another blood test for my ferritin and iron levels. As soon as we were done with that we got into the car and headed to PMR.

We arrived there at 9:35 and as soon as the nurse was done taking my vitals I started my OT session. It was a quick but intense 30 minute session. We started with exercises for my upper body strength then the real challenge began…She made me race against Yasmine in the hallway! And when I say race I mean I was running back and forth and back and forth! She made me race against her, then against another patient…I honestly didn’t think I could do it and my heart rate reached 174 bpm! It was such a rush. I thanked her so much for all her hard work with me the past 2 months and then we said our farewells (tear).

Once we were done with OT and my heart rate came down and I drank lots of water, we started on my PT session. We began with my usual lower body exercises then I asked her if we could try some new moves just to mix it up on the last day. We did squats while holding weights, balance exercises like the one Yasmine is demonstrating above and she made me jump rope with ankle weights on! What a way to end my last PT session. Our time was up and it was really sad saying our goodbyes (double tear).

The result from this morning’s blood test came out by 2:00 pm and I immediately received a message from my doctor about it. This is the first time in along time that my CK levels actually increased…But thankfully just slightly. My doctor said this CK fluctuation is normal as we’re decreasing my cortisone dose and not to worry too much about it. My protein levels are the lowest they’ve ever reached and this was a little shocking as I’ve really been increasing my protein intake. I’ll continue on the high protein diet I’ve been on and hopefully the results will be better during my next blood test.

وان الحياة بكل مجرياتها ستهون. ألف الحد لله على كل حال.