New Year, New Diagnosis

Make that diagnosES.

Well, hello 2025. It sure is the start of something new, mainly new diagnoses. Not really news I or anyone want to hear at the stroke of midnight.

#1: Rare Disease Diagnosis

During one of my ‘regular’ hospitalisations last year, I discovered that I had Oesophageal Diverticulum - a super rare medical condition. The doctors were scanning for something else really, and found this incidentally.

There are three ‘types’ of oesophageal diverticula, mainly based on where it’s located along the oesophagus. I have one big and one small diverticulum at the bottom, so I’m assuming it’s “epiphrenic diverticula”. Prevalence of Oesophageal Diverticulum is less than 1% in the whole world, and this type of diverticula accounts for only 20% of all such cases (Yam et al., 2023). So that makes it the rarest of the rare.

So, what are the symptoms? I mainly wake up choking and/or regurgitating in the middle of the night. On top of an exacerbation of chronic, idiopathic urticaria, inflammation from my other autoimmune diseases and general insomnia, you can imagine that that makes for some great sleep. It’s become a vicious cycle where I never rest well be it day or night, which eats away at resilience and ruins mental health.

Patients can also get dysphagia. There is no real treatment for it, and surgery is tricky as it’s so rare. My own rheumatologist and the gastrointestinal doctor have never seen the likes before. So it’s a ‘wait and watch’ kind of diagnosis.

#2: Major Cardiovascular Disease

To make things worse, my cardiologist broke some terrible news last week. I had a mitral valve repair done at Cleveland Clinic about 13 years ago, and it seems that it’s starting to break down. The echocardiogram revealed that I have severe mitral valve stenosis (narrowing of the valve). So yay, new beta-blocker on the block. That makes daily medication type #13 (though if you want to be technical, it’s a total of 30 pills per day exactly). Yes, I need them all to survive and get through the day.

As a patient with Antiphospholipid Syndrome (a blood clotting disorder), any surgery is high risk, much less a mitral valve replacement. It will have to be an open heart surgery this time, if/when it gets to that. I just broke my knees rather recently due to Lupus and steroids, which left me bed bound for nearly a year. I can never run again. I’m not ready for another major surgery so soon (or ever, really). The trauma, the healing process, the weakening of the body, and the complications of multiple comorbidities all add up.

For now, I’ve just been trying to deal with the overwhelming fatigue from the beta-blocker (a.k.a. depressed and rotting in bed). It’s a low-dose, so I hope my body gets used to it soon, or I can’t get anything done at all. I also hope that it doesn’t trigger my heart rhythm disorder. Fingers crossed.

To be honest, I feel done with life. I’m so tired, and these new conditions are not curable or simply just ‘pain’ - they warrant invasive surgery at some point. The unpredictability of both the timeline and the lack of knowledge surrounding these conditions are probably the hardest. If you’ve been chronically ill for decades - I know you hear me. But anyway, that’s the mood of the day.

Tomorrow is a new day.

For more chronic illness articles and resources, visit the blog: achronicvoice.com

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My Favourite Articles of the Week

1. Sounds of Silence (dailygood.org)
   “Silence nurtures our nature, our human nature, and lets us know who we are. Left with a more receptive mind and a more attuned ear, we become better listeners not only to nature but to each other.”
   

2. My Most Dangerous ER Experience and How My Advocate Saved My Life (@broadwaybabyto)
   “Keep in mind I’m 24 - I’ve just lost my uterus and with it my ability to bear children - and I’m on a high dose of pain medication. I didn’t know how to advocate for myself. I didn’t know how to push back. So I packed up and went home despite knowing in my bones that something was wrong.”
   

3. How Do We Decide Which Drugs Are Bad and Which Ones Are Good? (painnewsnetwork.org)
   “I’ll also often hear people defend their morning latte with something along the lines of “well nobody’s ever resorted to sex work to buy an espresso," as though that in and of itself makes coffee superior to a morning Adderall.”