Hello, friends...

It’s been a long time since I’ve written a blog post. Originally, I started writing at the request of others who wanted to learn about Graves’ Disease. I didn’t think anyone would care what I had to say, but this “little blog” of mine has now reached over 100,000 reads and even won a few awards along the way.

Neat!

I stopped writing because I felt like I didn’t have much left to say. I truly believed life would be smooth sailing after the storm I went through. Boy, was I wrong.

A lot has changed since my last update. I got married, we bought a house, had a baby, sold that house, bought another, and my husband and I both started our own small businesses—all while homeschooling our son. It’s been a beautiful, busy life.

  

Unfortunately, Graves’ disease is relentless.

We had hoped to grow our family, but my body just wasn’t able to. It was heartbreaking at the time, but looking back, it may have been for the best. I love my son deeply, but realistically, I don’t know if I would have the energy to care for two children. Graves’ disease brings a level of exhaustion that’s hard to put into words.

Since my thyroid was removed, nothing has been the same. My energy never returned. I made major lifestyle changes and lost nearly 70 pounds (and I’m still working on it), hoping it would help, but it didn’t. The number on the scale may be lower, but the exhaustion I feel is bone deep. I’ve learned that it doesn’t matter what I eat, how much I weigh, or what supplements I take… this is, unfortunately, my new normal.

Last year, I began experiencing significant gynecological issues that led doctors to suspect cancer. Interestingly, I met someone else with Graves’ disease who was going through something very similar, which sparked my curiosity and sent me down a research rabbit hole. It turns out that gynecological problems can be common in Graves’ patients, because of a combination of hormonal imbalances and high TSH level during reproductive years.

I underwent both an endometrial biopsy and a cervical biopsy which were both incredibly uncomfortable and painful.

Did you know that most clinics don’t offer pain management for these procedures?

I eventually found a clinic that did and chose to go there. Unfortunately, a receptionist from my doctors office found out and called me to reprimand me for that decision. I was already facing one of the most frightening experiences of my life, and being yelled at for trying to make it more tolerable was devastating. I still don’t understand why I was treated that way. After countless doctor visits and hospital stays over the years, I had never encountered someone so cruel. It broke me.

Thankfully, the gynecologist who performed my exam was incredibly kind. Afterward, she came into the room, knelt to meet me at eye level, held my hand, and gently rubbed my arm.

She said, “Rayanne; this seems like it’s going to be cancer. It’s very important that you follow through with further testing. You have a young child who needs you. Please don’t miss your next biopsy.”

That night I showed my husband things he would need to know to care for our child just in case I wasn’t here one day.

                                    

The waiting was agonizing. But by some miracle, the biopsies came back negative.

I may still need a hysterectomy someday, but for now, we’re focusing on more immediate concerns.

Another strange issue that had been building over the years was anaphylactic reactions. I had never experienced one before, but I noticed that more kept popping up. First to B12 injections, then to morphine during a hospital visit, and finally to a bee sting.

This past January, I started researching elderberry supplements to help protect my son during cold and flu season because he also has several medical issues himself. I was hoping to help myself avoid picking up something and passing it along to him. 

Unfortunately, that’s how I discovered yet another severe allergy.

I ended up in the emergency room, needing an EpiPen, IV treatment, and steroids.

At first, I improved but within a week, I developed severe, persistent stomach pain. It quickly became debilitating. I could barely eat, I was completely drained, and I spent most days curled up in bed.

Bloodwork revealed eosinophilia. My body was producing dangerously high levels of white blood cells, about five times higher than normal. I was prescribed another course of steroids.

Again, I improved… and then relapsed.

After a third round of steroids in just over a month, I was finally given a diagnosis: eosinophilic gastritis.

Eosinophilic gastritis is a rare, chronic immune condition where eosinophils (a type of white blood cell) build up in the stomach lining, causing inflammation and damage. Symptoms include severe abdominal pain, nausea, vomiting, and weight loss, often triggered by food allergies.

It didn’t completely shock me. I once attended a medical conference where a doctor said, “Autoimmune diseases rarely show up to the party alone.” In other words, if you have one, you’re likely to develop another. I’ve met several people with Graves’ disease who also live with MS. It feels incredibly unfair to layer illness upon illness on to people who are already struggling.

A few weeks ago, I was back in the ER—this time because my lungs were burning and it hurt to breathe. The doctor told me I couldn’t continue with steroids due to the risks. I now need to see multiple specialists: an allergist, an immunologist, and a gastroenterologist for further testing. Some of these have waitlists over a year long.

To make things more complicated, my Synthroid medication for Graves’ Disease conflicts with the steroids needed to control the eosinophilia. For the first time in over a decade, we had to adjust my dosage.

Without those adjustments, I would still be stuck in this cycle.

Eosinophilia is terrifying. If left untreated, it can lead to organ damage and even heart failure.

Adjusting my medication has bought me some time, I still struggle most days. I read labels meticulously to avoid another reaction. With summer approaching, I am terrified of getting another bee sting because I can’t control it and I will be thrown right back into the medical emergency I just faced. 

We recently paid $700 out of pocket for comprehensive allergy testing so I can better understand what other triggers to avoid that I may not be aware of. I now read every label like my life depends on it. 

I’ll be honest…  this has been incredibly hard.

Trying to be a present mother, homeschool, helping my husband run his business and manage a household while feeling this unwell is overwhelming. Telling my son “Mom needs to rest” when he just wants to play breaks my heart. I want to give him everything, but some days, I simply can’t.

The same goes for friendships. I often can’t commit to plans until the last minute, and I worry about disappointing people. I feel unreliable, and that’s not who I used to be.

My health anxiety has become intense. If someone coughs, I leave the area. If my husband is exposed to illness at one of his HVAC work calls, I isolate in another room of our home. I’m constantly bracing for the next setback.

I’m afraid to eat most foods, sticking to an extremely small list of “safe” options to avoid triggering reactions.

Some nights, I lie awake, quietly crying, wondering if my son will have to grow up without me. I think about the life I used to have…so full of energy and I struggle to imagine making it into old age feeling like this.

And yet… I am still grateful.

Every day is a gift. I’m thankful for my family, my friends, and the life we’ve built. Despite everything, I’ve created a cozy, meaningful life centered around home, learning, and love. I get to be present for my child, and that means everything.

                                     

You may notice that the tone of this blog post has changed compared to the previous years. I used to feel hopeful and trusting. Now… it’s getting harder to hold onto that.

Fifteen years ago, when I first navigated the healthcare system, it felt different. I received timely, compassionate care. Today, it feels overwhelmed and strained. I’m often asked how to fix it, but I don’t have the answers. The people on the front lines—the doctors and nurses—are the ones who truly understand what needs to change. That is who we need to be asking.

So, what’s next?

We’re exploring options for care outside our province and even outside the country. Places like Mexico, Arizona, and British Columbia are some of the options on the table.

We’re incredibly fortunate to even have that option. Many people don’t and the guilt I feel for that is immense.

The truth is, I would go into debt all over again to stay alive for my child. I’ve done it before, and I would do it again without hesitation.

Thank you to everyone who has followed my journey over the years. Your support means more than you know.

I’ll share updates when I can.

With love,
Rayanne