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!)

             

"You were given this life because you are strong enough to live it."

Well friends; 

 

Welcome back to my blog. I wish I was about to share some great news, but it appears that after a few steps forward, I've hit a set back in my fight against Graves Disease.

I am on my way to surgery #7. 

I have been documenting my progress mostly on my social media but this newest information is so ... bizarre, that I felt a blog post was more suited in the off chance that patients reading from across the globe might be able to give me some feedback on their experience. 

After my last surgery, my eyes looked great. No more 'surprised' eyes. They weren't 'my' eyes, but they were 'better'. Dare I say... I was happy? 

But mere months later, I noticed that one of my eyes started drooping on the bottom lid. 

I had seen this happen to others on Graves Disease forums that I follow so I wasn't surprised when it happened to me. 

Basically; because of the previous surgeries on my eyes, the trauma in the area caused to lower lid to 'collapse' for lack of better words. More white shows under one of my eyes than the other, as seen below. Some days it sags worse than others. and there is no guarantee that it wont get worse over time.  

I made an appointment with my eye surgeon at the hospital and headed in yesterday. 

What he said shocked me. 

He told me that I'm eligible to get another surgery to fix the droop... But the options? 

They can either cut cartilage out of my ear or remove a solid piece from the roof of my mouth and implant it into under the skin of my eye to build it back up. He warned me that it is very painful to do so however.

The other option is to accept eye tissue from a deceased donor. They would take a piece of the white part of the eye and fix it that way instead, avoiding having to transplant your own tissues. I chose this one. 

It's the less invasive option, but still a little unsettling to think about having a piece of someone else's eye implanted into my skin. 

Upon the surgeons inspection, he also found that my top eyelid has also retracted a bit, leaving me unable to fully close my eye again, so I will have to do another lowering procedure at the same time. Mornings are uncomfortable as the open space leaves hard spots in my eye from drying out. 

And the worse part of this situation? 

I'll be awake for all of it, again. 

I had such an emotionally draining experience last time and the surgery was the most difficult thing I've ever had to do. There is just something so incredibly unnatural; about being awake and strapped down while getting sliced open. 

While all of this sounds scary and overwhelming, I know deep down that I need to do it to try and make myself happy again.

I'm not the type to complain but, have a confession to make. If one more person tells me that it's not a 'big deal' and tries to convince me to change my mind, I'm going to scream.

Please don't forget; I lay it all out on my blog, but people still only see what I want them to see.


That means, I find myself squinting in person and pictures to try and hide the way my eyes actually look. 

I know it's an attempt to try and reassure me that it's 'ok' to look that way, but I would please ask for your support in this difficult decision. 

To me, it doesn't matter if people say that they ‘don’t notice’, I do. I have to live with it and walk around like that, not them. 

I truly hope that these people never have to make a decision about getting multiple painful surgeries to fix imperfections that they didn't ask for. 

It's torture. This isn't a decision I want to make, it's one I have to make. 

I'm too many surgeries, stitches and needles in to give up now and quit half way.

I gave up a lot to get this far.

         

Granted, with all the other things that could and have gone wrong, having to make a decision about more of a cosmetic procedure and not organ removal surgery again, I’ll happily take this option. 

I have to wait six months to make sure my eyes aren't protruding again as they are currently unsure. But if my measurements stay the same; they will then put me on the list for a surgery date, potentially sometime within the next year to a year and a half. 

Just another speed bump along the road. 

Lastly, while I have you here...
I want to say, please sign your donor cards if you haven't already.
You never know who you might end up helping... It could be someone just like me! 

With love; 

Rayanne 

Important Message!

As of July 30^th 2014;
The Graves Disease Foundation of Edmonton became a legal society and able to operate in Alberta. 

Rayanne Forbes, is pleased to announce that the Graves Disease Foundation of Edmonton will be fully operational and ready to accept donations from the public within the month of August 2014. 

We are now also in the process of getting CRA (Canadian Revue Agency) status so that we can give out tax receipts for donations. 

In short; Graves Disease is an auto immune and thyroid disorder  that randomly attacks parts of the body causing immense pain, discomfort and suffering. The foundation has been formed to assist people who have been inflicted with this disease. 

Rayanne, specifically, has endured six separate surgeries; three times on her eyes; she has had her gall bladder removed; her thyroid removed; and a double hernia related to the disease over the past four years.

She has chronicled each and every surgery in her blog – rayannesthoughts.blogspot.com - which has been read by 40,000 people from around the world thus far.

Rayanne has received contact from other Graves Disease patients from around the world in places like the Philippines, Germany, Russia, England and the United States to name just a few.

The Graves Foundation of Edmonton will assist patients who accrue medical bills that are ‘not’ covered under normal insurance and benefits plans.

The costs of medication, dental and even overnight hotel/motel stays will be considered for coverage for those seeking treatment who are not from the Edmonton area.

Areas eligible to be considered for coverage: Edmonton, St.Albert, Sherwood Park, Beaumont, Leduc and surrounding areas within 200KM of Edmonton. 

Amount covered per person will be on a case by case basis and subject by donation availability.

We will host yearly support meetings for patients to meet others in similar situations and discuss how the disease has changed their life. 

Graves Disease is an extremely costly illness to battle.  Rayanne’s recent dental bill was close to $5,000 to cover the 14 cavities caused by the pills she was taking for Graves that was drying up all the protective saliva in her mouth. In addition; her first two years of medication cost $10,000. 

The Graves Disease Foundation of Edmonton is proud to be able to assist patients to avoid financial devastation and offer support through this difficult and lonely journey. 

The Graves Disease Foundation of Edmonton’s website will be online shortly. Direct links to donate as well has the option to apply for future coverage are available on our website. 

For further information...

Media Contact:
Rayanne Forbes

Rayanneforbes@me.com 

With Love;

Rayanne Forbes and the whole Graves Disease Foundation of Edmonton team.