And the treatment journey continues. . .

Today, Sunday June 11th, 2023 was the first day of my continued treatment plan as an outpatient. My day started at 5:15am when I woke up and got ready for the many appointments scheduled ahead for the day. But before starting any appointments, I spent the morning savoring every moment I had with my children as they would be traveling later today to start their summer vacation. This was one of the hardest decisions for me to come to terms with (having them travel alone with their Grandfather, Aunt and cousins for the summer). As emotional as I’ve been about this and as much as I’m going to miss them, I’m so grateful to have family who can take them and give them a fun-filled summer vacation that they absolutely deserve. For those who know me, my family is my life and we truly enjoy spending time together, especially during our annual summer trips. While I know this is a new adjustment for all of us, I also know that this is the best decision we made for everyone. Saying goodbye was hard, and of course I got emotional but emotions have been a part of this process. And when one chapter closes, another opens. . .

So back to those appointments I mentioned earlier. The first one was at 7:30 am at the Amiri Hospital laboratory for my bi-weekly bloodwork. As soon as that was done, I headed over to the physical therapy gym and had my session with my therapist, from around 8:00-9:30. Mind you, there were a lot of breaks, chit chats, and catching up in between the excercises. We then had to wait for the test results to come out before getting a call from my rheumatologist to meet her in her office which was around 10:40. Drum roll please. . .my CK levels, that measure my muscle inflammation, reached the lowest levels since being diagnosed! Although my muscles are still inflamed, and my skin rash acts up from time to time, hopefully this means my body is responding to the IVIG treatment. We discussed my treatment plan moving forward, and how we will begin minimal cortisone tapering from tomorrow. My next bloodwork and follow up will be on Thursday morning. We were finally back in the car and heading home by 11:50. . . . what a morning.

Keep in mind that I had been in the hospital for 26 days, confined to a small room, with minimal movement within the hospital only, and always by wheel chair once I leave the room. So being back home and having to go the hospital required a lot of effort and exertion on my part as I have to conserve my energy for when I really need it, such as for my physiotherapy! When I finally got home, I had to rest and I attempted to take a nap to recover from the strenuous morning, especially since I had another appointment at 3:30. My nap lasted 10 minutes, but at least I was able to rest my body for a bit and have a hearty lunch that gave me a boost of energy. By 3:00 I was dressed and ready to head out to my next appointment, which was at the Physical Medicine & Rehabilitation Centre. After a 1 hour 30 minute assessment it was recommended that I be put in the “daily program”, that would entail 1 hour of physical therapy followed by 1 hour of occupational therapy, 5 times a week for the next 2 months. Pending some formalities and paperwork, I was told that I should be able to start my rehabilitation program with them by early next week.

As exhausting and draining as today was, I am grateful that I was able to accomplish as much as I did and I’m glad that things are moving in the right direction in terms of my treatment plan.

اللهم إني أعوذ بك من زوال نعمتك، وتحوّل عافيتك، وفجاءة نقمتك، وجميع سخطك.