"I Knew It, I Knew You"

On July 5th, 2016, I looked at our son, Liam, who had just been born, and couldn’t believe that my broken body had created something so perfect. If you’re new here, that’s because at age twenty-one, I was diagnosed with Graves’ Disease and have since undergone six surgeries to manage this illness.

However, I remember slowly feeling like I was watching the bricks falling, one by one, as Liam grew. 

This is the story of how Liam was diagnosed with Autism. 

Starting with the smallest details, I noticed our son didn’t play with his toys in the usual ways a child might. Instead of seeing him imagining up different play scenes, I would instead often find his toys perfectly lined up next to each other.

Later, as he grew, I noticed he was wise beyond his years and was intensely focused on building Lego kits for hours at a time. By age eight, he was already easily and quickly building 18+ Lego kits entirely by himself. He loves following maps and directions and always enjoyed helping me build patio furniture and other random household items I would bring home. 

I also noticed that he appeared to be clumsier than other children. While he walked at an appropriate age, he often fell or bumped into things. He couldn’t seem to do things other children could do, like ride a regular bike or stay upright on a scooter. We have since gotten him a three-wheel bike to accommodate these limitations.

Then we progressed to eating issues. Originally, Doctors called it a “pediatric feeding disorder,” which was later changed to ARFID as he grew older and saw more specialists.

I noticed that Liam almost always choked or threw up with food. He had severe sensory issues with smells, tastes, and textures. We started seeing an Occupational Therapist who did extensive, years-long food exposure therapy with him. It was a fascinating process, and we both learned so much. He went from having about five safe foods to probably fifty now. That isn’t to say that it is all smooth sailing, though. We still have nights where even trying a new brand of spaghetti makes him throw up because the texture is different from what he is used to, and I have to make a second supper that he can tolerate.

Avoidant/Restrictive Food Intake Disorder (ARFID) is a mental health disorder that typically presents through three main characteristics, which can occur individually or in combination.

Sensory Sensitivity: Individuals with ARFID may experience extreme sensitivity to the taste, texture, smell, colour, or temperature of certain foods. These sensitivities can make eating uncomfortable or distressing, often resulting in a very limited selection of foods they feel safe eating. Trying unfamiliar foods can cause significant anxiety, gagging, or an overwhelming feeling of discomfort.

Fear of Aversive Consequences: Some individuals develop intense anxiety or fear surrounding eating because they worry about negative experiences such as choking, vomiting, stomach pain, or allergic reactions. These fears may develop following a previous unpleasant or frightening experience with food. As a result, they may begin avoiding certain foods or restricting how much they eat to prevent these feared outcomes.

Low Interest in Eating: Other individuals with ARFID may have very little interest in food or eating. They may rarely feel hungry, have difficulty recognizing their body's hunger signals, or view eating as an unpleasant or time-consuming chore rather than something enjoyable. This lack of interest can lead to inadequate food intake, nutritional deficiencies, and difficulty maintaining healthy growth or weight.

It is important to understand that ARFID is not simply picky eating or a behavioural choice. It is a recognized eating disorder that can significantly affect a person's physical health, emotional well-being, and everyday life. Individuals with ARFID often experience genuine distress surrounding food, and their eating difficulties are not caused by concerns about body weight or appearance.

He also has extremely strict eating rules. For example, if a spoon has a water mark on it from the dishwasher, he will search the entire drawer looking for one he deems clean enough for him to use. Once, I accidentally scooped rice with a spoon that had touched another food, and he saw a speck of sauce on his rice that he was expecting to be perfectly white. He threw up his entire dinner while trying to eat it. He wouldn’t eat rice for months after that because he was so worried about it happening again. It really is interesting to watch how his brain works when something like that wouldn’t bother the average person, but for him, it was extremely difficult.

His sensory issues didn’t end with food. He always preferred quiet rooms with dimmed lights, and he didn’t do well in crowds, immediately becoming overstimulated and overwhelmed. He also has extreme germ phobia and will change his clothing an excessive amount of times and sanitize or wash his hands upwards of 30+ times per day. 

I think it was on his third birthday that I really started quietly wondering to myself about autism when I watched him he covering his ears as we were singing Happy Birthday to him.

Liam has always liked certain clothing; pajama's, to be specific. Almost every photo of him from birth to his current age of ten shows him in the same type of pajama's. He loves them so much that when Carter's discontinued making them, I drove hours and hours all around Edmonton and the surrounding areas, collecting every pair that I could to build a collection of all future sizes so that he would never run out. I tried putting him in a button-up shirt for a photo once, and he had a full hysterical meltdown. I didn’t know at the time, but he was clearly having sensory issues. Unfortunately, I didn’t know the full picture back then like I do now. He also developed into wanting the same pair of shoes. We buy the exact same pair, year after year, just the next size up, like clockwork.

Then, when he was in kindergarten, Liam was flagged for speech issues. As he is my only child, I just assumed his cute little mispronunciations were adorable and that he would outgrow them. Frog was “fwog.” Umbrella was “umbwella” … you get the idea. We started seeing a speech therapist and poured about twenty thousand dollars out of pocket into therapy with little to no results, and my mama intuition just knew there was something more going on.

The Occupational Therapist who did his food exposure therapy agreed and said something that changed our lives. She said, “I am not allowed to diagnose him with this, but I really think you need to see a neurologist. I believe Liam has Apraxia.”

I had never heard of this and immediately went home to research. The OT ended up being correct and the neurologist we saw agreed with that diagnosis. 

Apraxia is a neurological condition that affects a person’s ability to plan and coordinate voluntary movements, even though their muscles are physically capable of performing those movements. Essentially, the brain knows what it wants to do, but has difficulty organizing and sending the correct signals to make it happen. This is most evident in things like trying to ride in bike in Liam's case. 

It also affects Liam's ability to speak clearly and consistently. A child with apraxia typically knows what they want to say, but their brain has difficulty planning and coordinating the precise movements of the lips, tongue, and jaw needed to produce speech. This can make it challenging to pronounce words correctly, form sentences, or communicate effectively. As his mother, I can probably understand 90% of what he says, but strangers can probably only understand 70% and I am often reiterating what he is trying to say to them.

Liam has always been put into various club and activities throughout his childhood. I noticed that he never really clicked with other kids and I would often find him sitting alone at pick up time. It broke my heart. 

As many of you know, we started homeschooling in grade two because Liam also has a mild heart condition and asthma. He just wasn’t thriving in a typical public school setting and seeing him sitting alone at recess was crushing. I didn’t want him to have his spirit crushed by the inevitable bullying that I knew would follow so our homeschool journey began. He is doing so much better with one-on-one attention and carefully curating the children he plays with… who are often neurotypical like himself. 

(Shoutout to Liam's Dad Brett for hustling every day at his company Subzero Mechanical to make this arrangement a reality. When you support a little local company like ours… Liam is the one who really benefits!)

I was encouraged to seek a professional opinion after meeting another homeschooling mom who has a child on the spectrum after mentioning that I thought Liam had Asperger's. She agreed that our kids shared a lot of similar traits and told me to call a place called Khan Communications in Edmonton. They were the biggest blessing along this journey. The entire team is full of absolute angels and helped us so much during the entire process. If you want to learn about one of the tools that they use to diagnose autism, please look up the ADOS test. 

It was a long, intensive process and we received a twenty-nine page, in depth report back officially diagnosing Liam with autism, which in Liam's case is formally known as Asperger's Syndrome. 

Asperger’s Syndrome is a term that was previously used to describe a form of autism in which a person typically has average or above-average intelligence and does not have significant delays in early language development. Today, Asperger’s is no longer considered a separate medical diagnosis. Instead, it falls under the broader diagnosis of Autism Spectrum Disorder (ASD). However, many people still use the term Asperger’s to describe themselves or others.

People with Asperger’s often experience differences in how they communicate, interact socially, process information, and understand the world around them. They may have difficulty interpreting facial expressions, body language, sarcasm, or social cues that other people recognize naturally. Conversations can sometimes be challenging, particularly when understanding unwritten social rules, recognizing when someone is joking, or knowing how to respond in certain social situations.

The Speech Language Pathologist that assessed Liam at Khan let me know that she loved that he often said unintentionally funny things that someone his age wouldn’t usually say because he’s young but full of wisdom. He sometimes talks like a senior citizen and has the memory of an elephant so I enjoyed that she appreciated his wit and humour.

I wanted to write this post because I have always been an open book about my own personal medical challenges and I have heard countless times that people have learned so much about Graves’ Disease from my blog. My hope is that someone will find this blog one day and will learn something about Asperger's, ARFID, or Apraxia. The more that people that are aware of these conditions, the easier and more understood the lives of kids like Liam will be going forward. 

I used to have a co-worked with Asperger's and he was one of the nicest, sweetest humans I have ever had the pleasure of knowing and if people say the same about my son in the way that I admired my co-worker, then I will be a happy Mom. 

I titled this post “I Knew It, I Knew You” not only because Liam loves the song, but because I feel like I knew in my soul that he is special and I am meant to be his mother. I saw things early on that I knew others would think were absurd to even think about but I pushed and pushed to get him in front of every specialist that I could as he grew. I would walk to the end of the earth to ensure that he gets the care he needs. 

The psychologist who did our assessment said that she understood if all the information she provided was overwhelming but I felt the complete opposite. I felt relieved and validated. I finally put all the puzzle pieces together after years of searching to get to where we are today because he needed people to understand him and I think I accomplished that. We now comprehend how his brain works to guide him through life and make accommodations as needed.

People have asked “So, what’s next?” and the answer is… not much. There is nothing “wrong” with our son. There is nothing to fix. He just sees and experiences the world in a different way than some people and that can be a beautiful blessing too. 

With an official diagnosis we are now able to access several more government funded programs that focus on autism and I am excited to explore those options. It will also come in handy later down the line in university and when he needs to hold employment if he needs some special accommodations. 

As you can imagine, managing some of his autistic behaviors can sometimes be overwhelming but I know in my heart that I am meant for the job. 

I know Liam will do amazing things in his life and I can’t wait to see where he goes. 

"To Infinity… and Beyond!"

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 so they fight against each other and neither work properly. 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. 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?

I did receive a letter saying my referral was received, however the wait list is so long currently that they are not able to even give me an appointment date. They will send an update letter every 90 days to inform me if that changes. Funny enough, my son just went through the same thing. He needed an asthma specialist and his collection of "90 day letter updates" ended up being an over two year wait before he was finally able to be seen. 

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 medical 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

Welcome!

Hey, I'm Rayanne!

Thank you for stopping by to learn more about Graves Disease! When I was diagnosed at 21 years old; I discovered that there was very little to read about how my life was going to change, other than trying to dissect important information in-between copy and pasted medical text books online. That’s where the idea to create an all patient written based blog began. Going through all the symptoms of Graves Disease left me with surgical scars and bulgy eyes that I repeatedly got asked about by friends and strangers. That’s when I knew that there needed to be more awareness brought to this disease so that the patients of the future would not have to deal with the hurtful comments I have had to. While I am only in the beginning phases of my ultimate goal; to make “Graves Disease” as well known as the word “Cancer”;


I invite you to view my story from start to finish so I should mention that all posts are automatically uploaded from newest to the oldest being at the end of the blog. If you would like to read my journey from the beginning, please use the 'Navigation Bar' on the left side of this blog to find the first post and read upwards.



Thanks for stopping by and if you have any comments or questions; please feel to e-mail me for a personal reply at rayanneforbes@hotmail.com



"STRENGTH"
A river cuts through a rock, not because of its power, but its persistence.

-Rayanne 

"Your illness does not define you. Your strength and courage does."

Hi friends!

First off, can I just say a huge THANK YOU to all the people who visited this blog over the years! We hit over 50,000 reads this month and I am truly thankful that so many people took time out of their busy schedule to learn a little more about this disease. 

When I started writing, I only thought my family and friends would log on to keep up to date with my surgeries and such. Unintentionally; it has grown into a one of the highest read blogs worldwide about Graves Disease. We've even won some awards for this blog along the way! I have met so many amazing friends and I am so grateful to have connected with other patients for support that are battling the same fight as me. 

My charity has been blessed in awareness lately, including being a Celebrity Chef at Delux Burger Bar in Edmonton for the month of January. One dollar from each burger sold went towards The Graves Disease Foundation of Edmonton. We were also featured in Edmonton Woman Magazine!

                

   

I  had the opportunity to speak to 200 up and coming medical students and teach them about Graves Disease. My endocrinologist gave me a call and asked me to put together a half hour presentation on the illness for her classes. It went great and it felt so good to teach so many soon-to-be-doctors more about this little known disease so they can better diagnose their future patients.
 (I even tricked them into giving me a standing ovation!) 

                                 

I recently took a big leap of faith and made the decision to leave my 3^rd job as a columnist at The Edmonton Examiner so that I could devote more time to The Graves Disease Foundation of Edmonton and fully be there for the patients and families who need me. I will have more time to get our pamphlets out into the community, speak to more doctors and pharmacists and plan a fundraiser for 2015.

I am very excited to announce that The High Level Bridge will be lit up pink (like our logo!) on July 28^th to celebrate our one year anniversary of being a registered charity. My family and I will be taking some unique night time family photos as well with the very talented local photographer Darcy Evans.  

We had our first annual general meeting and also our first in person support meeting of the year, where almost 20 people came together to chat about their diagnosis. We now have 45 members in our online support group and we hooked up 2 people with permanent family doctors for their care. We have many other great opportunities waiting, however we still need the government to approve our CRA charitable number so we can give tax receipts to donors. 

                                           

Lastly; I wanted to share that I am humbled and amazed that I was recently nominated for a YWCA Women of Distinction award. One of my board members, Debra Ward, took the time to contact my friends and family members for letters of support. I am so thankful to be included in this incredible group of women. 

                    

While we have had lot of success with the charity lately; on a personal level, I’m still very much struggling. 

After some steady months on track, I have completely relapsed.

Since January 1st 2015, I've had 11 doctors appointments, 8 blood tests, 1 naturopath appointment, 2 X-rays, 3 heart tests and one day in the hospital. 

In December of 2014, I noticed that I was becoming sicker and really feeling more symptoms of this illness so I booked myself a doctor’s appointment. He sent me for a blood test and it of course came back abnormal. 

Because of the wonky blood test, he adjusted my synthroid dose (daily thyroid pill) and gave me another blood requisition to check the level the next month. 

Of course, the following test to check my hormone and thyroid levels both came back abnormal again. 

From December to this month (April), I have been floating in between completely hyperthyroid and extremely hypothyroid. I have not had a normal or healthy blood level for months.

Needless to say, I am struggling with a racing heart, shakiness, weakness, frequent bathroom breaks, feeling very hot or cold, dry hair + skin +nails, weight gain and extreme fatigue. I am a walking zombie. Sleep doesn't refresh me, if I get any at all. 

I want to work out to combat the weight gain but I simply just cannot muster the energy at the end of the day to do so.  I am beat. 

For those not familiar with the whole plethora of symptoms associated with thyroid disorders, just take a peek at the chart below.  (Click to enlarge)

                                     

I was referred to an endocrinologist in January but it is a three month wait to get seen, so I continue to sit in agony day after day. I've become really good at keeping a positive attitude and trying to assure everyone that “I’m fine” but it just simply isn't the case lately. 

Here is just some of my levels over the years...
(Check out all those 'highs' (H) and 'lows' (L) that shouldn't be on there!)

                                   

I received a call back this week that my newest blood test came back abnormal again and I am not even sure I will attend the appointment to learn the numbers its sitting at currently because the doctor simply cannot find a solution for me anyways regardless.  He cannot change or adjust my medication anymore and no dose seems to be the correct one; so even why go? 

                               

I am sad. I am frustrated.

I have tried every synthroid dose from 100mg to 175mg and all are either too high or too low. 

                                                

My doctor has tried every possible dose to try and get me at a safe level and it just isn't happening. He doesn't know how to help me anymore. So month after month, I sit and wait. 

I am exhausted and I’m trying to carry on with nothing left to give.

It is so scary when things don't work properly in your body anymore. It is dangerous to sit at such extreme levels for this length of time. I do not want to be sitting in hospital beds again. 

A few weeks ago I went for a barium test to try and figure out why my stomach isn't absorbing the medication properly anymore. It was incredibly stressful and took three hours longer than it should have because my body just wasn't working properly. I had to drink four more glasses than the average person to try and get a proper reading. You have to walk up and down the hallways throughout the whole test. I had 12,000 steps on my counter by the time I got to leave!

                                 

What I’m struggling with is... What do you do when the medication that is supposed to help you stops working? Where do you turn? I am clinging onto hope that my endocrinologist will be able to give me some relief when I see her next week, finally. 

Until then, I wait. 

                              

I wish I had a better update for those who have followed along with my journey. I like to provide hope to other patients, rather than remind them about all the potential  up's and down's this disease puts a person through.

 Sadly, this is the reality of the illness though.

But as they say, it always gets worse before it gets better..right? 

As always, I will continue to fight and hold out hope that one day I will find inner peace living
with Graves Disease. 

                                       

The universe has been sending me little signs here and there that I am on the right path and I will continue to trust that I will land exactly where I need to be by the end. 

Thank you to my friends and family for all the love and support I have been receiving lately. It is so very appreciated on the tough days. 

With gratitude from;

Rayanne and my silly pup, Lola!
(Trying out the blonde again for 2015!)