Family Meeting

Today is Tuesday, July 11, 2023 and it was the day for my ‘family meeting’ which was scheduled at PMR at 9:30 am. This meeting typically takes place at the beginning of the program at the Daily Care unit that I’m in but the supervisor was away and then the Eid holiday was almost a week long so for those reasons we’re finally having it today. During the meeting my PT and OT therapists, along with their supervisor, met with me and a family member from my side, in this case it was my husband, and discussed my condition, the program they’ve put me on, the results they hope to achieve and at the same time what we expect out of this program. It was a successful 30-minute meeting where a lot of information was shared and more clarity was shed in terms of my treatment and progress.

As soon as the meeting was over I went straight to the hydro pool with my PT. It seems like each day this week I keep writing about how my therapist is continually challenging me…Today she took it to another level. We did all the usual water exercises we’ve done before but this time she added 15 minutes on the treadmill in the water! You maybe thinking ‘What’s 15 minutes on the treadmill in the water…That’s easy!’ Think again. It was unbelievably tiring! The resistance of the water against my body as I kept walking was draining with each passing minute. I couldn’t wait for the second the 15 minutes were over. As soon as I was done showering and changing I knew I wouldn’t last a full hour at my occupational therapy session next.

As soon as my OT saw me she knew I was fatigued and exhausted so we just worked on my fine motor skills today. I was sitting on a chair, using my fingers, hands and arms to work on various strengthening exercises, but it was still draining! I was lucky I lasted 30 minutes. We ended the session a bit early and I was so glad we did…I needed to go home and rest. As soon as I arrived home I headed straight to my bed and napped for 45 minutes. As I’ve mentioned before, I’m not a napper at all but clearly my body, and mind, needed the mid-day break. We should all be gentle on ourselves and remember to take the breaks we need from time to time.

After my deep nap and a delicious lunch I had my zoom therapy session. Different topics were discussed but there’s one I’d like to share here. I had mentioned to her that many people who have come to visit me recently are genuinely surprised when they see me and the first thing they say is ‘Lulu you look great! We didn’t expect you to look like this!’. As lovely and encouraging as those words are to hear, they’re also a little frustrating. I will admit that I’ve come a long way and I feel so much better than I did but I still don’t feel that great on the inside. My muscles are still inflamed and tense, my joints still hurt, my sleep is still not what it used to be, I still have uncontrollable emotional outbursts…the list goes on. While I’m unbelievably grateful for all my progress, I still know I have a long way to go. As cliché as it sounds, looks can be deceiving…We never really know what’s going on in the inside, whether it’s physical, emotional or mental.

My results from yesterday’s bloodwork finally came out and I’m thrilled to say my CK levels are continuing to go down! ألف الحمد لله. My doctor told me to taper down the cortisone medication by another 5 mg starting today for the next week. My protein is still on the low side but hopefully I’ll be meeting with my nutritionist this week to see what we’ll be doing about that. ان شاء الله خير.

اللهم اختر لنا طريقا يسعدنا, طريقا لا يشقي قلوبنا و لا يؤذي عيوننا, طريقا ترضاه لنا ثم ترضينا به يا رب.