MCTD and Me; The "Flare-Ups".

In the past, before I understood what was happening, I often confused the flare-ups with other problems. Being diabetic, I assumed my blood sugar was off or that I was reacting to something I ate. It's challenging to describe how I can be perfectly fine one moment, and then, a couple of hours later, my cheeks turn bright red, my body feels hot, I experience aches and pains, and I feel weak. I used to refer to these as my "episodes." Whenever I was stressed at work or having a rough day, an "episode" would suddenly occur. These episodes could last from a few hours to several days and seemed to strike at the worst possible times, like when I was already stressed or unwell. In hindsight, I realize that I was experiencing numerous "flare-ups" without knowing they were MCTD flare-ups.

As I write this, I'm experiencing a flare-up. On Thursday, I received troubling news about my hearing loss and the possibility of insufficient blood flow to my head and neck, which led me to a deep dive on Google. I usually try to avoid researching on my own and prefer to wait to see my doctor, but in this instance, it was my ENT who informed me, and I need to follow up with my neurologist, whom I can't see until May 24th. Concerned about the news, I decided to investigate further. Everything I found was alarming and unsettling. It stated that poor blood flow to the neck and head results in deafness in over 50% of MCTD patients who reach this stage, and I've already been gradually losing my hearing. I also read that those with this condition are more prone to mini-strokes, strokes, headaches, early dementia, and various other unpleasant issues. On Friday, I woke up with bright red cheeks, weakness, and additional pain beyond my usual discomfort. In recent days, I've experienced facial twitching, headaches, an itchy scalp, hands, and feet, insomnia, a low-grade fever, louder tinnitus with new low grumbling noises alongside the high-pitched "Mariah Carey" screech I've heard constantly for the past three years, fatigue, aches and pains, a heavy sensation in my head, and a racing heart that disrupts my sleep despite my exhaustion. This is a flare-up, and it's challenging to explain to others. I don't want to be social during these times, and if I manage to get through a full workday, I definitely don't want to be disturbed afterward. I feel drained and just want to retreat to my bed and cuddle with my cat. Any additional demands only add to my stress. I've been trying to reduce stress since I realize my flare-ups are often triggered by it. However, in the last eight months, as I've mentioned in previous posts, I've undergone four surgeries and a mini-stroke, missed numerous workdays, accumulated debt while incurring new medical expenses, had a car and our home repossessed, moved in with my younger brother and sister-in-law, and had to separate my children among different households (this is the first time we haven't all lived under the same roof, even though they're older teenagers). On top of all this, I'm preparing for more missed work and two additional surgeries (right hip replacement on the 19th of this month and left hip replacement in June). So, while it's easy to say "stress less" and it's a nice idea, it's incredibly difficult to implement.

I am taking Hydroxychloroquine to help control my symptoms until I can see my rheumatologist (there's a six-month waiting list). In the meantime, my immunologist is doing his best to offer support. If anyone experienced with MCTD has advice on what works for them, I am eager to hear it, so send me a message or comment on this blog post. Thank you!

Facial rash resembling butterfly wings, a common symptom during an MCTD flare-up.