Can This Week Please End?

Today is Thursday, August 3, 2023 and I didn’t post anything yesterday because there was nothing to post. I literally did nothing…I was on the couch from morning until night, feeling super fatigued and just hoping to get better. Hey, at least I moved out of the bedroom for a change. This hasn’t been an easy week for me, physically and emotionally. For anyone getting a virus it’s never a fun thing, but for someone like me who’s already immunocompromised, it’s even worse. I had an itch in my throat yesterday and my voice was a little off with a slight lump in my throat whenever I swallowed. I was worried that my esophagus muscle was weakening again since I haven’t been doing my swallowing exercises lately. I made a note to ask my doctor about this when I was going to go see her this morning.

On the agenda for today was my check-in with my rheumatology doctor, the laboratory for the blood test my dermatologist wanted me to do (the one where the sample was previously misplaced so we have to repeat it) and my 3-week follow-up with my nutritionist. I arrived at Amiri Hospital at 7:45 am and went straight to the 6th floor to see my doctor. Although we’ve been in touch all week regarding my physical (and emotional) state, we still talked about all the symptoms I was feeling and she conducted a physical examination as well. I told her that I felt a lot of deja vu moments this week where I would say things like, “I feel so weak”, or “My muscles feel so sore”. These were all statements I used to make 2-3 months ago, prior to and at the time of my diagnoses and here I am saying them again this week. Why? Are my muscles weakening again? Is this because of this virus I caught or is this what they call a ‘flare up’ with my disease? My doctor told me that people with my condition who do get a virus could sometimes end up getting flare ups. The only way to know for sure is to do a CK test to see if the level is rising again or not. So a long with the request for the blood test that my dermatologist wants done, my doctor put in a request for a CK test as well. Before heading to the lab she continued talking to me about what to expect in the following week. As we had previously decided, I will space out my bloodwork to every two weeks but since I got this virus this week, I will continue on the same dose of cortisone next week and we’ll taper it down the following week. Hopefully I’ll regain my strength over the weekend and by Sunday I’ll be able to go back to my PT and OT sessions at PMR. I told her that I feel bad I haven’t been able to go since last Thursday…I feel like I’ve been working so hard there and I’ve reached great progress, that I really didn’t want to take 10 steps back. She assured me not to worry…That one week off wasn’t going to do much harm. I just needed to make sure I tried to move whenever I could and hopefully get back to my therapy sessions by next week. As for the swallowing, she examined my throat and immediately told me it was clear I have a virus and it wasn’t weakening of my esophagus.

I went down to the ground floor to get my blood work done. It was taking a long time to get approval for the anti-TIF1 antibody test that my dermatologist requested. They told me they’ll draw blood for the CK test but they’ll need to call me back once they figure out which government hospital does the anti-TIF1 antibody test. In the meantime, I’ll look into private laboratories that do this test.

Once that was over, we went up to the first floor for my 8:45 appointment with my nutritionist. She took a look at my blood work for the past couple of weeks and noticed that my protein went down last week, but came up slightly this week. However, it’s still on the low side. Keep in mind that I’ve doubled my protein in-take for the past 3 weeks since I last saw her. Next, I got on the body composition analyzer and waited with anticipation for the results to come out…I could see the disappointment on her face and I knew it immediately. My skeletal muscle mass has gone down…Slightly lower than what I had initially started with 6 weeks ago, the first time I saw her and we measured it. The muscle mass in both my arms, my left leg and torso has gone down to below the low levels. Only in my right leg is the muscle mass at the low level, but it still went down compared to where it was 3 weeks ago. As I’m the first dermatomyositis case for my nutritionist, she’s not sure if this decrease in muscle mass is due to the fact that I got a virus this week, or if my protein intake isn’t enough compared to the level of exercise I’m doing and therefore there’s muscle wasting or if it’s because of my condition in general. She told me not worry, we’ll re-do this test in 3 weeks and see where we stand. In the meantime she’d like me to try to increase my protein intake. Uuugghhh! She suggested alternate protein supplements as I’m getting sick of the current protein powders I’m taking. She’s going to review my daily food plan to see where and how we can add more protein to my meals.

I have to say, at this point so far today I wasn’t feeling my best…I was actually really upset and super frustrated. There’s a chance I could be having a flare up…we had to wait for my CK result to come out later today. My muscle mass was lower than when I had started 6 weeks ago even though we saw and upward progress at the 3-week mark. I was physically, emotionally and mentally doing so much better and now I found myself in this annoying slump. I couldn’t help but feel discouraged and scared. My husband had sent me this encouraging picture (shown above) as a reminder that our ‘best’ will look different each day, and he’s right. So remember not to be so hard on yourselves.

A wave of relief washed over me when my doctor messaged me my blood work results from this morning and I saw that my CK level was actually going down! أ It was not a flare up. We don’t have to increase my cortisone intake. I’m feeling the way I’m feeling (sore body, weak muscles, fatigue) because of the virus I have. My doctor’s exact words were, “CK is almost normal 👏 I’m relieved that it’s not flare of the disease. Low protein and decreasing muscle mass can be gained back again as long as the disease is under control.” ألف الحمد لله والشكر!

I’m going to continue resting it out this weekend and hopefully I’ll be back at it next week. Enjoy your weekend beautiful people and stay healthy.

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