Trial and Error

Today is Monday, October 30, 2023 and honestly I haven’t been feeling much better since my last post. I’m constantly fatigued, my joints hurt me, I feel depleted most of the time and if you find me going out and doing something it’s because I’m forcing myself to do so. I decided to go get a second opinion last week and believe me it wasn’t easy for me to do that…I felt like I was betraying my doctor who’s been with me from day one! But I just wanted to know why have I been feeling this tired for this long. Yes, my doctor did say that my bloodwork showed I had a viral infection which could account for my fatigue but it did drag on a little longer than it should if it was a viral infection…Anyhow, I went to see my mother’s rheumatologist who she’s been seeing for about 10 years now. He’s also the same doctor I went to see three days after my diagnosis to confirm I had dermatomyositis and on that day back in May he sent me straight from his clinic to be admitted to Amiri Hospital…I still thank him for that. So let’s just say I might have a soft spot for him and he’s a doctor I do want to listen to. To be honest, when I left his clinic I wasn’t sure going to see him was the best thing for my mental wellbeing…He kind of threw me off by telling me that I’m most likely going through cortisone withdrawal and that I actually needed to remain on my cortisone medication (minimal doses though) for the next three months! While on the other hand, my doctor had me on it until the end of this week only. But I guess this is what happens when you go get a second opinion…You have different approaches, different methods, different views. A part of me wanted to believe what he was saying was the cause of my constant fatigue but another part of me hated hearing that I had to remain on this medication for that much longer. I was angry, frustrated, annoyed, confused, and I spiraled in my thoughts…Who do I listen to, which doctor is right, could they both be wrong, should I go get a third opinion, why did I have to get this God forsaken disease! I just wanted to close my eyes, open them and have this past year be a dream…A very, very, very bad dream that I finally wake up from. But it’s not a dream, it’s my current reality and even though I felt like I couldn’t handle any more of it, I knew I just needed a few days to process all my feelings, validate them and eventually move on to deal with my current situation. After speaking with my doctor and explaining to her about this other doctor’s new cortisone tapering plan, I felt a little less confused. While she didn’t entirely agree and jump into his plan, she did ask me to wait until we met this week and did a few more blood tests to rule out other things before adjusting my cortisone medication. And that’s exactly what I did…I waited until yesterday, went to Amiri Hospital to get some bloodwork done then had a follow-up visit with her to discuss the action plan moving forward. Luckily the bloodwork all came back normal. Actually my CK level is great, my protein is finally in the normal range (all that daily protein powder added to my food finally paid off), everything seemed in order. My CBC showed some things as being slightly off such as my WBC, RBC, MCV, MCH, Eosinophils and a few other things which my doctor said could be from the immunosuppressant that I’m taking but it’s not a cause for worry now and nothing is alarmingly off. So we agreed to adjust my cortisone medication by increasing it to see if in fact my body has been going through cortisone withdrawal and we’ll reassess in two-week’s time then take it from there. My doctor could see the frustration I was feeling and reminded me that this was very common with people who have dermatomyositis or even other auto-immune diseases…Most patients reach a phase of trial and error with their medication until the right formula works for them and their body. I’m currently in that phase. As annoying as this speed bump has been, I know I’ll eventually get passed it. Not feeling good lately has taken me back in time to exactly a year ago when I was fatigued and drained all the time…That was not a fun time for me. But at least now I know what’s wrong with me and more importantly, I’m being treated for it الحمد لله.

اللهم أجرني في مصيبتي وأخلفني خيرًا منها.