“This is my wish for you: comfort on difficult days, smiles when sadness intrudes, beauty for your eyes to see, faith so that you can believe, confidence for when you doubt & enough love to complete your life.”

July 22nd, 5:47pm - I receive this letter from my Dad. 

It is his view on watching me battle Graves Disease for the last 3 years. 

Please take a few minutes to see how an illness affects not only the person diagnosed, but the whole family.

Here is an a rare look at an open letter from someone who has been watching from the other side of the hospital bed since day one. 

(Please read & share with anyone battling an illness!)


Graves Disease:

The Parents Perspective

 "Rayanne you have chronicled what you have gone through with Graves Disease brilliantly over these past few years  - and with thousands upon thousands of ‘reads’ of this blog I’m positive you’ve made a huge impact on others all over the world. 

However, after thinking about this a lot over the past while, I think it’s time you added a “parents perspective.’   

As such I hope my/our (wife Kim) observations can also be of assistance to readers of Rayannesthoughts.blogspot.ca too.

First off it’s important for parents, and family/friends, to watch for when things are ‘different’ in your life.   For us it was when your world started to turn ‘backwards’ for you. 

You were hot when it was cold.  You were cold when it was hot.   

You couldn’t sleep at night  and you couldn’t wake up during the day.   

Your mood changed – and you just weren’t that fun, perky, positive, upbeat girl we knew you to be. 

So we got that first test at the University of Alberta Hospital. 

I’ll never forget when you walked out and said   “Dad…I’ve got Graves Disease!” 

I said… “what the heck is Graves Disease?”   

I’m a relatively in touch and semi intelligent human being and in my six decades on earth I had never heard of it – so when we Googled it and started to read the symptoms we started to put it all together. 

What went on for the next two years was simply horrendous – not only for you but for the entire family.

The one thing about Graves, as you have noted in your blog, it’s 100% different for every single person who has it.   

Some folks have some minor problems and can easily adjust their life while others – like you – continue to have one problem after the other – and just when we think we have one thing licked Graves Disease strikes again and away we go for more surgery, pills, and other lifestyle changes.

 

There are several very scary parts about Graves.  We can be talking normally at noon – and then less ten minutes later I get that “Dad call an ambulance” thing so we call 911 and you’re rushed to the hospital where they tell us your heart has been racing to approx 200 beats per minute. 

Next was the various surgeries and the painful recovery process. 

 

As a Father your children are children forever – well into your twenties you are still seemingly a five year old when something ‘bad’ happens to you….and being in the hospital recovery room when they brought you in after the gall bladder; thyroid; and eye operations are as painful a memory as one can possibly imagine.

The eye surgery alone was extremely hard on us – and seeing you blindfolded, in pain, in bed hours after that surgery will be ingrained in my mind forever.

Yet, the next day when we came back in, to have the Nurse say “I can’t believe your daughter.  She’s one of the nicest people we’ve ever had in here.  So positive.  So strong!” filled me with pride unlike anything you can imagine.

In discussing the one going problems with Graves Disease with you ‘nobody’ can fully understand your motivation until you lay it all out. 

“Dad many people have it worse than I do – I want to be a role model and help others!”

“Dad there’s no accurate information on the internet.  It’s too wide and varied.  I’m going to write a blog and tell others what I go through to help them cope with Graves.”

“Dad, I want to start a Foundation and help others if they need financial assistance.  I went through hell trying to get EI.  They just don’t understand.”

As you’ve chronicled in your blog trying to get assistance through EI was near impossible.  Some of the things they told you to do was truly unforgiveable.

“Sell your car.”  

“Are you applying for a job?” 

Answer:  “No – I just had eye surgery.  I can’t even see let alone drive or work!”

Just so frustrating to know people who ‘use’ EI because they DON’T want to work versus somebody who WANTS to work – and can’t.

For other parents, the symptoms of Graves can hit at ‘any’ time – and you have no lead time what so ever so the impact on work is obvious.

Thank goodness you have such great people at YESS and Sun Media who truly ‘understand’ what you go through and help you work around the challenges related to Graves Disease.

I could go one for days about what we all have gone through in this family in trying to be as much help as possible to you and what you’ve gone through over these past few years.

Your sister Lauren has been a ‘rock’ throughout this whole process and was there for you/us each and every time you needed help.  She too cried her eyes out several times in the Hospital parking lots watching you endure these surgeries.

Mom doesn’t say much about it – she’s the quiet type – but the stress on her too has been huge and she literally didn’t eat for a week when you were in the hospital for the operation/recovery process more than once.

(*Rayannes note: My parents have been to almost every one of my 50+ doctors appointments!)

Me.  I try to be upbeat – positive – and ‘there for you’ throughout the entire process.  My quest to ‘learn’ has been immense.  My job is to recognize when you need a helping hand (and the Bank of Daddy because you couldn’t do this on your own easily) – and I cannot tell you how damn proud I am of how you have ATTACKED Graves in the media, your blog, and throughout your chats with others on Facebook, Twitter, and face to face.

Endless pills.  Redoing your entire dental work.  Eyes that bulge out.  Heart beating erratically.   Boyfriends who bailed on the 3^rd date after you tell them you have Graves Disease. 

These are now the ‘new normal’ – yet day after day your focus has simply been on helping ‘others’ which is an admirable thing to do for sure.

As I ‘constantly’ tell you "keep positive"  – I admire you  so much – and I hope in some way a ‘parents perspective’ will add some value to the tremendous advice you have been featuring in your blog.

To all that read this – Graves Disease is not a one person disease.  It’s a family disease and although we don’t physically feel the pain that Rayanne does we struggle every day of our lives with the ‘whats next’ we will face with this awful disease.

So Rayanne – never forget that your sister Lauren, and your Mom and I, are going to fight just as valiantly as you do to beat Graves Disease.

One thing I know for sure. 

You will win!

Love

Dad

"Everyone want's happiness; nobody wants pain, but you can't make a rainbow without a little rain"

Happy Spring folks!

I'm back with many new updates to fill you in on. I've been asked for months why I haven't updated my blog and have been sent many messages asking about how Graves is affecting me lately.

To be honest with you... I haven't been honest with *myself* lately.

I've been having a tough time with multiple symptoms and problems developing or reappearing.

For months now I’ve been taking on more projects and trying to forget or ignore the symptoms this illness puts a person through. Although I've been blogging for well over a year now, I still struggle with sharing my problems and pains with others. I rather be known as the tough chick who takes life head on than the complainer. But, of course - these are the realities of Graves Disease. As always, I strive to show the realness of this disease. The ups, the downs, the tears, successes and what to expect. But mostly, that I will not give up and that you can get through anything that life throws at you - with a smile still on your face.







So without further delay; I present to you;

Life with Graves Disease; Almost 3 years after diagnoses.

As I typed up my first draft of this post late one evening, I wrote the words "I haven't been taking care of myself as well as I should be. I thought of these words all the next day. How could I be spending my days working two jobs for other people and not taking care of myself too?

Before I go on... Let me tell you about the newest changes in my life and why my priorities have shifted lately…

First off, I am now a feature columnist at The Edmonton Examiner (with 2 columns now!) and also Youth Empowerment & Support Services new Community Engagement Coordinator.

My job includes being out and about in the city shaking hands and kissing babies with the great folks who hold fundraisers for our agency. It's a fun position that allows me to use my broadcasting background to connect on a deeper level with donors around the city.

If you would have told me a year ago that I would be out and about in the community interacting with people, I would have laughed out loud (and then probably cried at the sheer terror of the possibility!)

After my first eyelid surgery leaving me with wonky looking eyes; I hid every day in my dark room. I was boyfriendless, jobless and scared of leaving the house because people made fun of how I looked. It was like being back in high school. I truly believe that when you meet people, they are either a blessing or a lesson. My friend Stela from the U.S who I met via my blog had introduced me to a few months ago to some awesome tips and tricks (circle lenses!) that alter the appearance of my eyes and I haven’t looked back since.

My life went from hearing “why do your eyes look like that?” to “wow, your eyes are so cool!”





I have regained control of my life in some aspects. Although still noticeably different sizes; people are much more distracted by the unique color and appearance to notice anything else now. I have been asked multiple times to create YouTube Videos of how to do Graves Disease makeup and will be making a video soon for all those who asked! I feel like it’s the least I can do to help fellow sufferers to regain sheer normalcy back in their own lives and honor the impact Stela has had on my life.




Of course, with these new career changes come some health problems though. Within my first week of changing positions at both jobs (& being undoubtedly overwhelmed!) I had two episodes of extreme chest pain.

 I have unfortunately been pushed under the radar enough times in "the system" that I now choose to silently suffer when it happens. Each time I've been to the doctor/emergency they can't help me unless it’s a rhythm problem or physical abnormality seen in the heart through an ultrasound because it’s very difficult to diagnose random chest pain.

While I constantly have a 'rhythm problem' (supraventricular tachycardia) due to Graves Disease, there is not much they can do to help for the random pains that seem to be mostly stress related. As I’ve said recently; "I can handle stress mentally but not physically."

In the past, I've seen one cardiologist that I had to actually explain the synopsis of Graves Disease to. As you probably guessed it; nothing came of that experience. Because of my age and the rarity of the illness in the city, the awareness and knowledge just isn't there yet. I am admittedly guilty of not being more aggressive with finding solutions to these problems because I’ve grown accustomed to feeling this way and people not understanding.

I'm happy to say that I finally gave my head a shake and booked a full physical with my family Doctor for next week where I will be asking for regular blood work instead of only testing it when I feel particularity ill. I will also be asking for another cardiologist referral and an echocardiogram to see the damage Graves has caused on my heart since diagnosis. The last one I did was years ago when I was first experiencing the rhythm problem but as this is an autoimmune disorder that attacks the function of different organs; checking on it now is crucial to understanding my chest pain treatment options in the future.

I am also still on the wait list for a second attempt at eyelid reconstruction surgery to fix the surprised look that the last eye surgery left me with. Surgery could be anytime within the next year. I am so nervous that they will alter the way my eyes look in a way that I won’t like so I am comfortably sitting with silly looking eyes for the time being.







 I am seeing also a new specialist next week that will monitor my vision on a more regular basis as I am only currently seeing an eye surgeon between operations to measure how much they are moving forward again. Protrusion and bulging of the eyes causes blindness over time and I’ve been having troubles with seeing and difficulties around bright lights. I am ecstatic about having a regular doctor to monitor my eyes. I got referred to this specialist after a regular glasses shop optometrist couldn’t believe no one was checking on my eye health.

Secondly;

I would like to add that I am not a doctor, nurse or anybody practicing in the medical field.  I'm a Graves Disease sufferer - and obviously closer to the problems associated with this little known disease than most people.

As such I was very surprized to read this on the WEBMD site the other day;

"Although the symptoms can cause discomfort, Graves' disease generally has no long-term adverse health consequences if the patient receives prompt and proper medical care."

How could there 'not' be ongoing problems with a disease that randomly attacks the body?  Currently I have had these organs 'removed' from my body:

-Thyroid Removal

-Gallbladder Removal

&

-Orbital Decompression

-Blepharoplasty (Eyelid removal surgery)

All in relation to the disease.

I am on Synthroid (thyroid hormone replacement) & Bisoprolol (Heart pill to control rhythm) that I take on a 'daily 'basis and will for life.

This past month I was also surprized when I went to my Dentist appointment for what I thought was just a checkup and a small tooth ache.

Adding to the list of complications, I was told I have not 1, or 2, or even 10 cavities. I have 14. All of which, developed since 2010 (The last year I saw the dentist and the year of my diagnosis)

The Dentist was knowledgeable about Graves Disease and tells me that the reason I have so many cavities is that Graves Disease and the medications that I take are altering the amount of saliva in my mouth. 

Saliva 'protects' the teeth by constantly washing them and my mouth is often very dry and causing the teeth’s enamel to be worn down very quickly, letting cavities form faster than the average person. 

Cost to fix? Just over $4,000.

As I 'age' I'm discovering more and more about this disease and that I need to monitor several things on a 'daily' basis. I'm almost certain that as the disease moves around my body and attacks; I indeed will have some form of "long term effects" because of it.

Long story short, it's tough feeling mentally, physically and emotionally drained everyday. 

So WebMD – I ask of you to study this disease a little further to be totally in touch with people who need this information.

In addition; if you have not checked out this website yet - I suggest you do:

It chronicles the 300+ (yes, really!) symptoms that someone with a thyroid disorder feels and goes through on a daily basis. Read it, share it, and help someone else get a diagnosis before the deeper problems appear!



http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really

As my own website hit over 20,000 read this week, I am again humbled to be share these new discoveries with you, my readers, so that you may use this information to protect yourselves from going through some of the issue I have had to because you will be aware to look for them.

And finally; I want to share with you something I have recently discovered that both inspires and empowers me to find the beauty in my story. It is my new passion, catch phrase and motivation. I have always believed that scars are the badges of honor you wear to show the world how TOUGH you are! Finally, I found someone else who is showing that “Scars are Sexy!” in her own way.

Rock Scar Love is a modern, trend setting clothing company focused on helping individuals with physical, mental and emotional scars to embrace the lessons they represent. Owner and creator of the brand, Amy Tippins believes that scars are sexy and when embraced they can only change lives for the positive. The company aims to provide scar owners a way to tell their story and inspire others to live passionate lives.

The story of RockScar Love began when Amy had a liver transplant. “My scar made me feel imperfect, but over the years I have learned that imperfection is my perfection.”

The shirts (& other gear!) come in a variety of colors and slogans including the cheeky “You show me yours and I’ll show you mine!”, “Privilege of the scar” and “Scars are sexy!”

I ordered my first T-shirt tonight and will be posting pictures in my new gear as soon as it arrives!

Website: http://www.rockscarlove.com

In keeping with the theme; I leave you with an empowering video to remind yourself that no matter what you’re going through, your strengths, weaknesses, scars, illnesses and issues- you are more beautiful than you think.





I will keep updating as I visit my various specialist’s offices and as new developments occur. From me to you, no matter where you are reading from; I wish you enough love, tranquility and strength to get through the difficult days.







"Today I choose happiness over illness. Today, I will not worry. Today, I will let go of all that makes me anything but blissful, energized and peaceful. Nothing can steal my smile."




-Rayanne

“Do not pray for an easy life, pray for the strength to endure a difficult one”

Happy 2013 folks! 

Welcome to my first post of the year!
Isn't it amazing is it to look back over the last 365 days and see how much we have all grown?

After one hell of a medical roller coaster ride last year brought;
I am stronger, wiser and ready for anything this next year brings.

Admittedly December was very hard way to end the year for me. Along with enduring another car accident; I starting noticing the increased daily pain and migraines. I visited my eye doctor and shared my concern that my eyes had begun moving forward again. Not only was I right, but they were bulging at a quick pace. 

The doctor immediately booked me for a treatment I knew nothing about and the reviews online were split on whether or not it is effective.



After about a week later, I was getting three days of in-hospital steroid treatments at the Royal Alexandra Hospital. The steroids (temporarily) take down the swelling behind my eyes. The first day I went the nurses couldn't find a vein in my nervous ice cold flesh. 

I sat with multiple hot blankets wrapped around both my body and arms....

Rocking the blanket arms... Cute hey? ;)


Since I had to be poked multiple times with the needle I had to go home (and work) with the IV in so the nurses wouldn't have to try and insert a new one each day.

The doses of steroids took a half hour each to drain into my body and felt like burning acid slithering through in my veins. While the initial relief I got from the treatment both improved the inflammation behind my eyes and left them with an improved look I would not do the treatment again. 

Many people in the Graves' Disease community advised me that as soon as the steroids have fully been absorbed in my blood they would be ineffective. I am now a month post treatment and my headaches returned and one eye is left more protruded than the other.

Like most things when I'm researching something Graves related I googled online communities and forums for Graves' Disease patients. I have learned that getting radiation is a more permanent and effective treatment for Graves eyes. 

Although, with every treatment - side effects are a reality; especially with something as drastic as radiation. I am currently doing my homework on this treatment option. I still have a year (Or less! Fingers crossed) on the surgery wait list to re-do my failed blepharosplasty. 

My doctor delivered some unsettling news with the promise of another surgery.... I am still going to be awake the next time they perform it. His hope is that I will be in a less conscious state, but comfortable enough to complete the cutting and removing of excess eyelids. It's safe to say my anxiety is at a '10' every time I think of enduring that procedure again.

On the bright side, my Graves' Disease sisters worldwide always look out for each other and I have learned some new things that I hope will bring other lost souls the same comfort it brought me... 

There is a Facebook group called: "Orbital Decompression Surgery" that specifically talks about the little known surgery that so few of us go through. While it was a 'lonely club,' dealing with it by myself, I have felt so welcomed and comfortable each and every time I visit the page. It is a private & protected group so please send them a friend request if you feel like you could benefit from their advice and support.

I also wanted to share with you one 'cool' thing I learned from another Graves patient, and great friend of mine across the globe, called circle lenses! Often feeling insecure about my 'surprised' looking eyes she shared with me a website that sells contact lenses that enlarge the coloured part of your eyes, drastically minimizing the wide eyed appearance. 

The website is http://geocontactlens.net & here are the before & after pictures...




“We cannot do great things on this Earth, only small things with great love.”


I have a secret I've been bursting to share with you all!
2013 brings.... The launching of my Graves Disease Foundation. 

Although in the early stages, the naming is done, the papers are soon to be filed and I will be Edmonton's one stop shop for support, advice and possibly post surgery funding through future auctions and fundraisers. 

To all those over the last two+ years who asked; "How can I help?" - Here it is! 

Expect your invite to future events! I realize that the Graves community is small, but even if I help make even one patients life a little easier it will be worth it... My soul can rest a little more peacefully at night. 

I feel like the last two years of up's and downs were each leading me closer to finding my purpose here on earth. 

More unveiling to come....

"Every great dream begins with a dreamer. Always remember you have within you the strength, the patience and the passion to reach for the stars to change the world"




As 2013 crept up upon us faster than Felix Baumgartner's free fall from space;
I've finally had a few moments to reflect back on what this last year has taught me.

1)“No matter what happens in life, be good to people.
Being good to people is a wonderful legacy to leave behind.”

Maya Angelou said it best when she engrained these words in time; "People will forget what you said, people will forget what you did, but people will never forget how you made them feel." I currently work with inner city youth and during our heart to heart chats, the most common topic they bring up is dealing with people who have made them upset. You will never be able to control what people do or say to you, but you can control your reaction to it. Holding onto anger is like holding onto a hot coat intending to throw it at someone; in the end it's going to be you who gets burned. I am a big preacher of the 'kill them with kindness' theory. 

Not everyone is going to like you in life, and I'm ok with that. Don't worry about hating people who hate you; just keep busy by loving people who love you! Always make time to spend with family because there will come a time that they wont be there anymore, call your friends often even if its just to say 'hi' and take care of yourself so you always have your best face forward out in the world. Always put yourself in the other persons shoes, if it hurts you, there's a good a good chance it will hurt the other person too. We have all been let down, hurt and disappointed. Always remember that heart sinking feeling and make sure you don't pass it on to another person. Life's too short to hold grudges and most importantly, if you see someone who looks like this having a bad day; lend them your smile.

2) "Don't let the little stupid things break your happiness."

Did you spill coffee on yourself on your way to work? Are your kids driving you nuts? Cranky co-workers? I have a few words for you... as the outrageously popular book (for a reason) proclaimed; "Don't worry about the small things, and their all small things!". While its easy to get caught up in the drama of the situation, I hope you take a second to breathe, relax, and know that this moment is the only moment you know you have for sure. Embrace it, deal with it, laugh a little and move on. 

There will always be life's little tests chasing you around every corner and the best you can do is arm yourself with a positive attitude to take on the days. I am a full believer that the second you wake up, you have a choice. Your choices are be miserable and cranky or positive and productive.

Which do you choose?

3) "I can be changed by what happens to me, but I will not be reduced by it."

I have had to accommodate this illness for years now. I am forever marked with scars and will have long term health complications. I used to bombard new people I met with my story as a protective measure; as an either "take it or leave it" stance. I wanted everyone to know what I went through early so that if they couldn't handle being around it, I wouldn't be hurt when they left. I call that being 'reduced' by Graves' Disease. I can say my attitude is the complete opposite now. 

While originally upset with my diagnosis; I am changed by this disease for the better. I take 'I would have never know you are ill' as the highest compliment. I believe you can do anything you set your mind to and I'm winning this battle with Graves by enjoying every moment of my days and pursuing passions. No matter what your situation is; medical conditions, work stress, financial issues... Use every experience as a growing opportunity and share with others what you have gained from your tough times so that they can benefit from your wisdom without enduring the same pain. The great Mother Theresa once said; "Help one person at a time... and always start with the person nearest to you."



I am excited to share my latest opportunity with you! No longer 'just a reporter', next week marks my official debut as a feature columnist at the Edmonton Examiner. I will be focusing on the heart of our city- all the charities that make us run. If you have a specific charity you want to suggest for a feature, please send me an e-mail! You are welcome to follow along with my columns at; www.edmontonexaminer.com

Lastly; I'd like to share one of my favourite songs... I encourage you to take a second to view and absorb the message. It's a lesson we can all benefit from- dropping our bad habits, learning to be the best you can be and finding the inner courage you need to take on new challenges. It's inspirational, empowering & teaches you to embrace your 'inner ninja'.



" I've been high and I've been real low
I've been beaten and broken but I healed though
So many ups and downs, roughed up & clowned
We all got problems, but we deal though
I'm tryin' to do better now, find my inner peace
Learn my art form, and find my energy
When my backs on the wall, I don't freeze up
Nah, I find my inner strength and I re-up
Here we go, I know I've never been the smartest or wisest
But I realize what it takes
Never dwell in the dark cause the sun always rises
But gotta make it to the next day
Nobody's gonna see me comin'
Nobody's gonna hear a sound
No matter how hard they tryin'
No stoppin' me since I've found
My inner ninja!"


Until next time, from where ever you may be reading from;


I wish you lots of love, happiness and all around good things for you & yours this year!



 Cheer's to new experiences, new challenges, new opportunities and even new hair!



Rayanne.