"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face."

I am about to attempt the seemingly impossible;


...and Blog about the orbital decompression surgery I had last week while still experiencing double vision. So follow along and thank heavens that auto correct has already been invented! :)


My surgery went ahead as scheduled on May 23rd, 2012. Most of my operations have been pretty routine so I couldn’t help but notice the increased amount of interest this procedure had stirred up from inquiring minds wanting to know more about what was going to happen. I read through hundred’s of Facebook, Twitter & E-mail messages from friends and family sending me positive vibes or asking questions leading up to the little known surgery.


After an overnight stay in the Royal Alexandra Hospital, 16 needles, one painful eye decompression surgery and 7 days later; here I sit, homely and pathetic looking, but one day closer to recovery. 





The moment I remember waking up from surgery was terrifying because, unknown to me, the surgeon had put a Vaseline based product in both eyes so when I opened them I everything was a complete blur. I assumed for a few seconds I had lost my vision until I was reassured it could be washed out with saline. I also have 7 uncomfortable stitches healing in each eye. My worse memory of the surgery is the extreme nausea for the first 2 days along with all the injections of medication to help fight it.


The first day after was probably the easiest because the swelling doesn’t really begin until 24-48 hours after, which is when the pain really kicks in. Although after my eyes were washed out, I had and still currently have double vision. The surgeon has told me that it is expected to stay for about two weeks while the swelling continues to go down but there is still a chance it could be permanent.


I still feel pressure from behind my eyes similar to before the surgery but it’s more of a swollen feeling. I was never the type of person to get much swelling or bruising after other injuries so I’ve come out of this operation much less bulgy looking than pictures I’ve seen online of others who went through the same thing. I feel cross-eyed and like I am unintentionally staring at things because I just can’t seem to find a comfortable place to let my eyes rest at yet. 


The bottom part of my eyes are swollen upwards so I can’t see the entire view of what’s around me and walking into walls and a vacuum cleaner has already reminded me of this. I closed one eye to see text message’s clearly or watch TV in the first few days. Post-surgery all eye patients must sleep on an upright angle for a week to keep the swelling down and nearly every hour of my days were spent hiding under an icepack. On the 4th day of healing, my right eye also poured a bit of blood for a few minutes and then stopped which was a very creepy surprise. Since it has only been a week, I dont have much more to add about the recovery process but will update in a future post, along with fully healed eye pictures.


(Click to enlarge)



Overall, so far I like the results. Its nerve racking not knowing if my vision will be permanently impaired but it’s also freeing to already see the beginning of a somewhat normal looking appearance again.





“How people treat you is their karma; how you react is yours.”


Through these last few years I’ve come to notice that the problem with dealing with a serious illness in your early 20's is unfortunately there are still many, many immature people around who can't ever comprehend how difficult going through something like this is. 


Being diagnosed with a Disease almost no one’s heard of and having to go through all the symptoms and surgeries while no one else you know is can be extremely alienating. I've been made fun of to my face at bars by drunk people making their eyes appear bigger while walking by me laughing. I've had mean girls write me while hiding behind a computer screen saying “I deserved this and its karma paying me back” as a result of declining to continue friendships in the previous years. It's ironic that the same people who said these things have been tracked viewing my blog via IP addresses multiple times. So to them, I would like to say;


If you are looking for a self-destruction story, you won't find it here. What I have been through mentally, physically and surgically has made me so strong. I gained the motivation to do better and for all the hard times; fate has rewarded me immensely in making some of my other dreams come true.

"What seems to us as bitter trials are often blessings in disguise." 


I feel so blessed to have learned such valuable life lessons at a young age. I learned that beauty fades, so there better be a wonderful personality underneath too. I learned that objects are replaceable but family moments aren't and it's important to surround yourself with those who make you smile. I learned to appreciate all the wonderful, mysterious, almost coincidental moments in life because usually they aren't coincidental at all but rather a lesson put in your path.


Some have said that there are special people placed in our lives to teach us, to love us, to hurt us & to make us exactly the way we should be. I agree with this theory in sickness as well. Some lucky folks will stay healthy their entire lives, some tiny miracles will be born with defects and some, like myself, get sick as a reminder to others that no one is immortal. So seize the day, find your passion and most importantly; just be kind to others.


"Never deprive someone of hope. It may be all they have." 


Since launching this website, I’ve had the pleasure of meeting some media and business people who I have silently admired from the shadows for years who praised me on my writing, some even extending future job opportunities. I have been showered with beautiful cards, flowers and emails from generous people who I have not yet met but have read my story. I am forever grateful for their kind words guiding my sometimes hopeless spirit through my darkest days. To hear repeatedly that my website is bookmarked on people's computer is the highest compliment to me, and I thank you endlessly for coming along this journey with me.


(Beautiful gifts from visitors post surgery!)



I've posted private, emotional details and pictures I was ashamed of for the world to see in hopes that I can help be a source of information for the next generation of graves disease patients while educating the general public.


I still have another operation in my near future to remove some eyelid from each eye once the healing is complete from this last surgery. It will be my 5th, and hopefully last operation needed since being diagnosed with Graves Disease in 2010. As always, I will include pictures once my healing is complete.


Going through this journey has opened my eyes to a problem I never knew existed in Alberta as well…


 Our E.I system only covers 15 weeks of medical benefits at a time and after dealing with several very unpleasant and downright hurtful Service Canada employees, after recovery I will be beginning my crusade to help people in my situation with income support while ill. After being told by the government to sell and live off the money of my only possession left that Graves hasn’t robbed me of, my car, I think it’s safe to say we may have a flawed system. Armed with multiple Doctors notes for time off, I was still unable to receive any assistance while recovering from surgery. If anyone reading has any leads of the right people to contact, please e mail me.

Off to rest my eyes and continue the healing process!
As always, to my loving family; Marty, Kim & Lauren… thank you for being my rock, my wonder wall & my reason to keep going. I love you.







 “Anyone can give up; it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”

-Rayanne

"Smile when in pain. Smile when troubles pour like rain. Smile when someone hurt your feelings, 'cause smiling always starts the healing."

I think when you are scared of something you do your best to ignore or not acknowledge it. This is what I have been doing with the information I am about to tell you.

I haven't been able to sit and write a post about what I am about to experience because if I did I would be admitting that one of the things I'm most scared of is about to happen.

I have been preparing to go back to work recently & went to my eye specialist on Tuesday where I got the most surprising, wonderful, scary information to date. Since my eyes have "stabilized" more than expected the Doctor was able to offer me surgery sooner. Not just one surgery, but two. Once the surgery to remove the extra growing tissues from behind my eyes is healed there will be another one to remove some sections of my eyelids to complete the "look".
(& so begins the war with the government to get more time off for surgery/recuperation again)

The interesting aspect of the surgery is that you have to bring in about ten high quality photos for the surgeon to work off during the procedure. He didn’t know what I looked like before I had Graves. I have always been a bulgy-eyed patient to him. He must carefully sculpt behind my eyes and take out enough tissues to leave room for my eyes to expand back into a replica of what I used to look like. It is nerve-racking leaving the permanent fate of your appearance in the hands of someone else.

The recovery time is about a month as there is significant swelling and bruising associated with some eye surgeries. I will also be left with visible incision scars around my eyes for some time.  


When I left my eye appointment the Doctor told me his office would be in contact with me for a surgery date within the month. Anyone who knows the Alberta Health Care system understands that we generally have long surgery wait times.

The next day the Royal Alec hospital called me to give me my surgery date.

May 23rd.

May 23rd?!?!! That's like...a month away. No, that's 28 days away from now (but who’s counting right?)

I was completely blindsided hearing that my surgery was in less than 30 days. I sat there; anxious, happy, overwhelmed, scared, but mentally unprepared assuming I had months to process what was about to happen to me.  But it's everything I had been wishing for right?  


I look at before & after pictures of patients on the internet who got the same surgery and I get emotional looking at their pictures. Gazing at the beautiful images of recovered patients is enough to bring tears to my eyes. I know exactly how much that surgery probably meant to them and I admire the courage it took to get through all the pain and emotions that come with it.

I never once thought "why do I have to go through this? Why is this happening to me?" but lately, all I want to do is scream "%#@$ GRAVES!!!!" off a building top.

I'm growing increasingly frustrated with the symptoms and surgical solutions to each problem. Within the last two months I've also noticed that my hair started falling out in clumps which is a common symptom of thyroid related conditions.

I am also still getting heart tests regularity and completing monthly blood work because my B12 and red + white blood cells are constantly low, comprising my already weak immune system. I feel like I am taking more pills to control my Graves symptoms than my Grandmother takes. I have to take ‘Synthroid’ for my thyroid levels, ‘Bisoprolol’ to control my heart rate, Iron pills to raise my blood cell count, B12 + Calcium pills, Selenium for my eyes and an antibiotic pill to control the havoc of break outs on my face from the fluctuating thyroid levels.

I went to get a cavity filled and the dentist wouldn't do it until I went and got a medical clearance note from my family Doctor to assure him I wasn't going to be a liability for him.   And now, I am about to erase the (hopefully) last outward reminder of what I go through on a daily basis and fix the devastation Graves Disease has caused on my eyes.





I found it extremely helpful to view before and after pictures of other surgery patients and I will be posting mine post-operation as well.

Send healing thought’s my way next month and I will check in again when I am recovered.


Until then;
Rayanne
 

"Sometimes you need to be knocked down lower than you have ever been to stand up taller than you ever were."

I am now exactly 2 weeks post-operation to remove my gallbladder and giving Frankenstein a run for his money, as I now have 6 incision scars between my neck & waist.

“There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.”

(click to enlarge)

A few weeks ago, I was out with my Dad at his business meetings and two people who I had never met before came up to me, introduced themselves & complimented me on my blog. It is such a surreal feeling when you walk into a room where someone knows almost everything about you but you don't know anything, other than their name, about them.

 I am so blessed to have the readers that I do. I always thought celebrities sounded so artificial saying "I have the best fans in the world!" but on a much smaller scale, I truly understand because I have the best READERS in the world!

The emails, Facebook & Twitter messages I’ve gotten, along with face to face conversations I've had in regards to what I have written on here astound me.

The more people that I meet who know my story, the more I hear amazing compliments that I never expected.

Most people enjoy compliments such as "you’re beautiful" or "I love your ___"

I fondly remember the best two compliments I've received in the last few years.

"I had NO idea you were sick;"

often accompanied by a complete look of shock on their face.

Or;

"I don't understand how you stay so happy;"

along with the many other variations of that phrase.

I never fully understood what it was about my story that made people mention their new found appreciation of their own lives. Nor did I comprehended their desire to send me the beautifully crafted notes that they so gracefully took the time to write because I never felt like I had done anything different than another person would do if they were in my shoes.

That's when I realized I had been missing out on the most important thing in life.

Celebrating.

I never went to my high school graduation, or celebrated getting my license, or went to my college graduation. I never threw a big birthday party either.

Realizing that I haven't been celebrating all the milestones I've accomplished to date de-values all the strength it took to go through everything so far.

The most important thing I've learned throughout the disease is to appreciate the little things in your day that make you smile because the next day can put you through another stressful, trying, painful, hopelessly dark situation.

While these may seem like odd things for someone to celebrate, this is my list of what I am most proud of. So here is a virtual CHEERS to myself for getting through a Graves Disease diagnosis, a heart condition diagnosis, open repair hernia surgery, a total thyroidectomy, a gallbladder removal, literally hundreds of needles & a horrific car accident… all in just under 2 years.

After several hospital trips monthly, my family & I all counted our blessings in February of 2012 that I had made it a full 365 days without going back after my thyroid removal.
(Minus new tests & specialist visits!)

I am on day 14 of re-starting that countdown.

Unfortunately the excitement that the countdown holds for me already has a big black cloud surrounding it.

The hardest decision most people my age have to make is what bar to visit on the weekend. While I am proud of what I've accomplished so far, I am terrified of my next big decision.

In 10 months I will be eligible to get my eye decompression surgery. While I complain a lot about the appearance of my eyes in my blog, getting the surgery is for more than just beauty. I sleep with ‘Eye Vaseline’ in my eyes nightly because one of them is so bulgy that it doesn’t even close all the way anymore and gets dried out easily. This isn't a simple surgery, as it takes many hours to complete. It is an uncommon and highly specialized operation that only two Doctors in Edmonton are capable of completing and the risks are real. The decision to free myself of the daily inexplicable pain is being weighed down by the unimaginable;

A list of the risks of the surgery:

- Bruising/Infection

-Scars/Swelling

-Asymmetry of eye position

-New on-set of double vision (that may be permanent)

-Numbness in cheeks/lips

-Blood clots

-Airway problems

-Additional surgery in future

-Leaking of fluid in the brain

-Brain hemorrhage  

The principle I cherish most in life is that time heals all wounds.

Not only does it cure the physical scars, the beauty of it is that even if you don’t know the answer to the question that is causing you to emotionally hurt today, it will come to you eventually. Perhaps it will be through a dream, encouraging words from a friend or even an epiphany of your own.

Put yourself in a state of mind where you say to yourself, “Here is an opportunity for you to celebrate like never before, my own power and my own ability to get myself to do whatever is necessary.”
 

I would like to end this is a new, unique way. At the bottom of each blog I post, there is an option to leave a message. You can choose to identify yourself or leave a comment completely anonymous.

You are invited to join me in my virtual celebration by adding on to my list of
“Things I’ve done that I wish I had Celebrated.”

Whether it was BIG or small, a promotion at work, finishing something you have been working on for years or just getting through a difficult time in your life; POST IT!



I look forward to hearing from you and again 'thanks' for reading/sharing my blog!

-Rayanne

“Everything in life is temporary. So if things are going good, enjoy it because it won’t last forever. If things are going bad, don’t worry, it can’t last forever either.”

Rayanne’s 10 Commandments when dealing with an illness;


1. Thou shall welcome & accept all new changes in life, whether or not they were expected.

2. Thou shall understand that anything worth having does not come easy.

3. Thou shall be braver and stronger after each needle.

4. Thou shall accept that it's ok to cry, and that tears do not represent weakness.

5. Thou shall share wisdom gained through your experiences with others.

6. Thou shall remember to tell loved ones how much they mean to you regularly.

7. Thou shall wear scars proudly as a reminder of how strong you are.

8. Thou shall remember that if you’re in pain, it doesn't give you the right to be a pain to others. (As the great Maya Angelou once said!)

9. Thou shall show compassion to strangers, for you never know what they're battling.

10. Thou shall understand everything will be ok in the end, & if it’s not- then it isn't the end.


My favorite, and little known 11th commandment, is as follows;


"Thou shall not blog on a day when you are feeling down."


I am about to break that rule today.


Just as much as I write for other peoples reading pleasure, I post blog entries to remind myself of the up's & down's of my days. I would never want to sugar coat this disease for anyone reading for informational purposes.


As I write this, I am 5 hours into sitting on an uncomfortable paper covered hospital bed in the Misercordia Hospital waiting to speak with the anesthesiologist who will put me to sleep before my surgery in 4 days.
                                                         My writing headquarters

After a brief discussion, she tells me that my usual 'day surgery' to remove my gallbladder is being extended to an overnight stay due to the risky nature of putting someone with a heart problem under anesthetic. There was also worry about making sure that I don't get sick after the procedure (as I have been every other surgery) because of the pressure it would put on my already bulgy Graves eyes.


Staying positive is so hard some days.

One of those days was yesterday. If you have ever used our governments EI System (unemployment pay due to illness or job loss) you know two things; they treat you like garbage & they pay you the bare minimum.


One of my worst memories through dealing with these illnesses was sitting at Service Canada the other day in a dark, crowded, dirty room with homeless people on one side of me & immigrants who spoke loudly in other languages on the other side of me.


It is no secret that many people misuse & abuse the payment system and all of the government workers I've spoken to through this process have treated me as a worthless person who lives off the system. I have also had to fight many times for the little pay that they give me.


I sat with tears streaming down my face & thought; How did my life get to this?


Where did I go wrong?


It is one of the hardest things in the world to not blame yourself when things don't end up how you wanted them to be. Never did I expect this to be my life or where I was going to end up when they made me create my 'five year plan' in high school.


The days are becoming more frequent where I stay home due to eye swelling and the embarrassment that comes with it.


Worrying about the surgeries with the unknown outcome is incredibly stressful. Not knowing about the certainty of my future and what I am going to do between the next 2 surgeries for work keeps me up at night.


I have crying spells a little more often than I would like to admit. The discomfort/pain is making me feel a little less sane each day. I am mentally, physically & emotionally drained.

If this is the big guy upstairs way of making me ‘tough as nails’ – its working!


But alas; the light at the end of the tunnel.


In a world where you can either wither away by drowning in your sorrows or surround yourself with positive things; I choose to do just that. As I have mentioned before, life tends to throw curveballs and make things difficult so that we can truly appreciate all the good when it comes our way.


So, to honor the 6th Commandment; Thou shall remember to tell loved ones how much they mean to you regularly

Thank you to my Dad, Mom & Sister for lending a listening ear when I needed to vent or asked for advice. Thanks for the endless flow of support and always letting me know that things will be ok. I have felt lonely and helpless many times but was always quickly reminded that I will receive the best treatment possible – no matter the cost.


You have been my saviors, my best friend and my family.


I love you!

"Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be cumbered with your old nonsense."


-Rayanne

"Imperfection is beauty, madness is genius and it's better to be absolutely ridiculous than absolutely boring.”

People ask me all the time “When do you write?” 

 Since I am currently unemployed while I wait for my next surgery, I started referring to myself as a ‘writer’, and I think anyone else who writes would have a similar answer to mine. I write when I have dozens or perhaps even hundreds of ideas floating around in my head until I can’t think of anything else except for those thoughts and I will not do anything else until they are put to paper. While I am not necessarily new to writing, I am new to allowing anyone at any time to read my thoughts with a click of a mouse. 

While Graves Disease has robbed me of many things, including the answer to the question “So what do you do?” when I meet people, it has given me a new answer which holds more pride behind it than any job I’ve ever done in my life. 

“I’m a writer.” 

I feel confident saying that because it is more than just a job that pays bills for some people, it’s a personality characteristic like singing; you either ‘have it or you don’t’. What exactly makes someone a 'writer'? Is it based the amount of reads a peice gets, or is it the value of the words? While I search for my new identity after Graves Disease has taken away nearly everything I thought I was; writing has become a new comfort zone & release for me.

I am just finishing my first month of being off work which has left me nothing but time to let my thoughts wander through every capacity this illness puts a person through.

Here is just one of many;


On Beauty:

With TV ads, movies, magazines and billboards nearly everywhere you look the message companies are trying to bombard you with is clear; being beautiful is important. There is a product to erase wrinkles, diminish dark circles, change your hair color and make you skinner. But what if your biggest beauty insecurity is only fixable through surgery? 

No, I’m not talking about breast implants or a nose job. Those are for cosmetic reasons while getting an eye decompression is for sheer normalcy again. Haven’t heard of it? Neither had I until last year. This is a surgery I qualify for next year to scale down the protrusion of my eyes caused by complications of Graves Disease. 

For those who don’t know, basically the surgeon makes an incison down your face, starting from the corner of your eyes outward, lifts your eyes & goes behind them to take tissue (or bone depending on the severity of your condition) and makes more room for your eyeballs to expand into; creating a more normal ‘non-staring’ gaze. The reason I have to wait is because the cycle in which Graves eyes change is about 18 months, plus a 9 month post waiting period afterwards, as they cannot do surgery while the eyes are still changing.

Your entire life, whether you acknowledge it or not, revolves around someone telling you ways to make yourself better. This is where my frustration comes in.  There is nothing I can do to stop what is happening to me & society tells you that eyes should not look like this so I desperately try to cling to normalcy by spending hundreds of dollars yearly buying expensive eye make-up & false eyelashes to help cover it up. 

Something recently caught my eye on the internet; a campaign to get Mattel to create a “Cancer Barbie” which resembles a young girl going through chemotherapy treatments. While the idea is so simple, it is enough to bring tears to your eyes even thinking about the children in the hospital who play with their beautiful luscious blonde haired and perfectly sculpted Barbie’s wondering why they don’t look like that while battling an illness. I truly hope they can create this one day to teach the new generation that beauty comes in all shapes in forms.

         

If I could ask for only one thing out of sharing all my insecurities for the world to read is that one day a younger Graves patient stumbles across my blog and finds comfort in my words that things do get better. Not soon, not easily and not without pain; but they do. 

When I was first diagnosed I hid it from everyone except my immediate friends & family. I felt shame for having a “Disease.” After months of pills, needles, surgery and leaving only bits & pieces of cryptic information on my Facebook for people to form their own opinions on; I decided it was better to educate people than to try and hide from people figuring it out.

That’s the beauty of starting a project like writing. This blog has grown from just my family reading it, to friends, to a newspaper featuring a story on it, to readers literally from around the world. I even recently took a chance & wrote to the Ellen show about Graves because; why not? 

The more people that understand what exactly this illness is and how it affect a person, the more accepted the patients of the future will be, hopefully making them more comfortable to come out into society with bulgy eyes and needle marks from the hospital visits… and who knows - maybe I can help pioneer the first ever Graves Disease Barbie in time! 

So Cheers to the broken road; the one that seemed to take us on a twisted, complicated, dark path but lead us to a better place. It may have not taken you to where you intended to go but you ended stumbling upon on bigger & better dreams for yourself. Let the journey’s bumps along the road motivate you to help another, and never forget to be kind to others because you never know what they are going through.

“May the wind always be at your back. May the words of my mouth guide you through. May the pain you have known for so long go away. May your smile shine on. May your journey never end in tears. May your suffering end at once. May the tears that fall from your face be happy tears. May happiness surround you in time. May the pain from yesterday be washed away with the rain. May the ones you have lost make you realize how lucky you are. May your mistakes be forgiven. May you never give up in life. May you never lose hope or faith." ♥

Until next time; "thanks for reading my blog" and please do me the courtesy of sending it to others....

-Rayanne Forbes

"Life isn't about waiting for the storm to pass; it's about learning to dance in the rain."

With the New Year’s passed, it’s time to talk about resolutions. Mine, revolves around honesty. Some plan on losing weight, or to quit smoking. I simply wish to learn to be more honest with myself, and those around me. Always being the one to keep a brave face, I wanted to write a blog post about what I really think about the day to day battles with Graves Disease. This will probably be the most real, uncensored post about my thoughts and will include pictures I have been too ‘ashamed’ to show – until now.

This picture was the last picture I remember taking before my life completely changed, it gives me such a sad feeling looking at it because at that moment; I thought I could do anything. Weeks later I was sitting in emergency rooms, then my life revolved around pills, and eventually; getting surgeries.

When I went to the Graves conference in Boston; there was a speaker who put the situation in perspective for me. He said; ‘When someone with Cancer, Asthma or Diabetes tells you their illness, people automatically feel empathy because it’s so common and well known; but with Graves Disease, because it is so virtually unheard of; no one understands what it is so they don’t know how to help you.” Hell, I didn’t even know what it was until diagnosed.

They teach you when you are little that you can be anything that you want to be. They teach you to dream big and believe anything is possible, with every fairytale ending happily. What they don’t teach you (which is probably the most important thing), is what to do when life makes other plans then what you had hoped for. Snow White didn’t get Graves Disease, Belle didn’t have to plan 5 surgeries mere months apart and Cinderella’s pumpkin carriage never got in an 80mph crash on the way to the ball.

So where do you do find the answers to the unimaginable when you need to completely rearrange your life to accommodate unfortunate circumstances? Slowly but surely, I am starting to figure it out…  
 

Recent updates:
I was assured by absolutely everyone that it was all uphill last February when they removed my thyroid, because surely that was enough to go though, right? Well as days turned into weeks of improving; I started noticing my eyes getting worse and my heart beating faster and faster to the point where I almost fainted more than once. My monthly blood work turned back into bi-weekly. A heart test showed I have extra pathways in my heart and the rhythm problem they thought was going to end with the thyroid being removed continued. During a 24 hour Holter monitor to test my heart rate; it fluctuated between 48 – 158 beats a minute (Normal is 88), so I am going to be on heart pills for the rest of my life to control it.

In December 2011; I developed pain on my right side and in the area where I had hernia surgery, although much worse so I assumed I had a cyst or something else. An ultrasound showed I had not one, but two hernias this time (one on each side). They also discovered I have Gallstones. I have a consult appointment with a surgeon two weeks from now and they will be completing a bilateral hernia surgery and gallbladder removal the same day in the upcoming weeks. That part doesn’t upset me, what does is taking one step forward and three steps back in life. It makes me sad I have to quit yet another job due to medical issues. Putting your life on hold more than once is like being stuck between a rock & a hard place. I would love to be able to plan my life further than a few months at a time.  

On Dating:
Let’s face it, finding someone to spend your days with is tough enough as is. Try adding medical problems on top of it. I have no problem meeting people, but as soon as they find out I have Graves Disease, (or other issues) it's a quick decline in interest. I compare it to having a child; it is truly a lifelong commitment you need to decide if you can put up with. Graves is relatively easy to hide/keep to yourself; until the eye symptoms start. If you have been following my blog since the beginning; you know I have mentioned that your eyes begin to protrude out. Many people say they look normal but my family can tell because they have seen me without all my smoke & mirror makeup/eyelash work on. To the naked eye, it looks "normal" but the difference stands out very easily to Doctors and other Graves sufferers. I work at a medical clinic and I have had 2 patients ask me if I have Graves without me mentioning a word about it simply from looking at my eyes. Now ponder how a first date would go sharing that news? "My eyes may or may not protrude further out of my head than they are now". People ask me all the time if I tell boys upfront about my medical problems. The answer used to be yes; but after scaring off a few early on, the answer is 'no.' I rather someone get to know me for ME; rather than letting this illness define me. I am not only a face of Graves Disease; I am a nice, smart, sweet, caring girl who has been dealt a few unfortunate cards in her life.

I will share with you two true stories in the last year. I developed my first hernia from moving an ex's stuff while he was out of town. We lived together & a few days after surgery when I still needed help to move around and do simple tasks; he took off to an impromptu Vegas trip with his friend and left me at home. My mom came and moved me, along with my stuff out the same day.
The next story; I was in the hospital for almost a month in isolation prior to my thyroid removal. I was dating someone who told me he was at home sleeping, meanwhile two days in a row my friend texted pictures as I sat in my hospital bed of him partying at a nightclub.
As you can see; boys clearly do not stick around at this age when times get tough. In a way; I do not blame them though. This is my journey, this is where life has taken me and very few people of this age understand a life lived in and out of hospitals and frankly; who would want to? I never expected that things would end up like this and after my first rounds of surgery; I couldn’t understand why people kept going out drinking every night, living recklessly and acting stupid; but the longer these medical problems keep dragging out, the more I understand that while my journey has opened MY eyes, many people have not gone through this and it will (hopefully) take many years before they get their wake up call. I still believe in fairy tale love stories, even though no one has taken the time to show me they exist. Although I think it is better to be alone than in bad company; I believe one day someone will come along who will hold my hand though the hard times, instead of crumbling when they need to step up and be brave with me.


Eyes:
After much consideration & debate; I decided now was the time to show those who don’t know the full effects of Graves to see the one thing I am most insecure about- my eyes. I pitched the idea to a few people of putting my before and after eye pictures on my blog and was very on-off about the thought of it. I am very overprotective about who I let on my Facebook (as it is the only place that I post the link to my blog) and I only want people who I already know like ME for ME to read about my journey through this process. I don’t want to be judged by people I don’t know about something I truly cannot control. I don’t mind people from around the world who I have not met reading my blog because they most likely typed "Graves Disease" into Google and are looking for information themselves. I just started going out again and new people I meet ask to add me on Facebook, which is very personal to me for sensitive information, and putting 'incriminating' pictures online of the one thing I try desperately to hide on a daily basis on display for all to see is a little scary. The reason I decided to go through with posting pictures was when I read this quote;

"Don't rely on someone else for your happiness and self-worth, only you can be responsible for that. If you can't love and respect yourself - no one else will be able to make that happen. Accept who you are - completely; the good and the bad. Don't ever say you're not good enough, if that person can't see how amazing you are, then they're the one who are not good enough for you."

(Click image to enlarge)


Basically; I want to show that this isn’t an 'easy' Disease. You don’t take a pill and it’s fixed. It provides pain, tears, instability, insecurities and hard times. Once diagnosed; the solid world you knew starts falling apart piece by piece beneath your feet. You will trade your yoga pants for a hospital gown multiple times a year. You won’t always be able meet up with your friends in a bar when you want; instead they will visit your hospital bedside when they can. Your ‘jagger bombs’ and ‘vodka slimes’ will be replaced by heart pills. The contacts and eyelashes that make you feel beautiful will be replaced with glasses from the painful eye swelling. You will see specialist doctors more than you will see your own friends. Your days sleeping in will be rearranged to accommodate early morning blood work and your flawless skin will be marked with scars that tell your story.
  
The Future:
I truly appreciate all the people who have written me over the last several months to show your support. I can’t tell you how much it means to me. A few of you even came out of the woodwork and opened your life up to me and shared your stories of hard times and told me I was an inspiration to you. When I started blogging, I just wanted to provide answers to all the questions I was getting asked about regarding my condition. Defining Graves requires such a large amount of information so I decided to gather everything I knew and all that I have been through & compile it for inquiring minds to read about. I never thought I would receive so much positive feedback. How nice it is to feel like your friends and family support you through anything! So thank-you for all messages big and small from those I know and those who I have just met through reading my blog & thank you again for keeping me in your thoughts, it is much appreciated.

I can tell you the one thing I want out of life; to feel normal again. I dream of the day where I have a stable job. People will ask me; “How are you doing?" & not "When is your next surgery?", I will nix the constant blood work, only see specialists for follows ups & not new problems and finally be able to go on the trip my family planned to Hawaii (but cancelled to accommodate me!).  I don’t expect it all at once, but I am happy to take it day by day. After all, I heard God doesn’t give you more than you can handle, I just wish he didn’t trust me so much!

I will update my blog post-surgery & let you know how it went. Until then;


-Rayanne

Review of the 2011 Graves Disease Conference

These are my follow up notes from the conference I attended in Boston, Massachusetts on November 4^th-6^th 2011 put on by the National Graves Disease Foundation
 
 For extensive information on Graves Disease;   http://www.ngdf.org/
Imagine stepping into a world where someone from the another country who you have never met was able to finish every one of you’re sentences within minutes of knowing each other, almost as if they could read your mind. Don’t think its possible? Then you probably don’t have Graves Disease & you definitely haven’t been to a conference about it before. What I learned at the conference was that while Graves is a very individualized condition & everyone has a different experience; many of the symptoms are the same- no matter which course of treatment you receive. Being around people you don’t have to explain yourself around is liberating. While friends and family back home sympathize, its hard to fully understand the mental & physical manifestations caused by Graves without going through it themselves.

I noticed a common theme around the conference was bitterness, some anger, a lot of confusion & the feeling of “why me”. During this last year I never once wondered why I got this disease. I believe everyone has a life course planned out for them & it was written in the stars long before you even had a fighting chance to change it. I had a few days in hospital isolation where I felt sad about the situation but I never had the thought of “why is this happening to ME”. There are much worse things that can happen; I see them at the medical clinic I work at daily. I also noticed an immediate sense of friendship among attendees. The comfort of being around someone else that knows exactly what you feel on a daily basis & can comprehend the pain you have experienced in the past is comforting.  I won’t get into the symptoms of Graves in this post because if you have been following my Blog from the beginning, you have already seen a glimpse into the daily struggle of Graves patients.

We got broken up into groups of about 10 and shared a little about our life stories. In the USA (we were the only Canadians) the doctors there mostly use radioactive therapy to melt away the thyroid so there were very few people there who had gotten their thyroids surgically removed like myself. I had a lot of people asking me about the surgery because it seemed a little ‘foreign’ to them. I noticed everyone was very stressed about their health situation. They talked about mood swings (a common symptom associated with Graves) and how they didn’t feel like themselves. I have stayed very calm for the most part during this whole process. The best advice I ever read which I have never forgotten through the years was; “There is no point stressing over something you can’t change. Whatever is supposed to happen is GOING to happen & no amount of worry can change the outcome.” I think that’s how I survived this whole process staying seemly sane. I didn’t get mood swings because I didn’t let myself. I also believe I’ve made it through the up’s & downs of the disease by simply blocking it out of my mind. Having it right in your face all day long at the conference & seeing patients with eye symptoms worse than my own was upsetting. Witnessing first hand where the next stage of Graves is going to take put me on edge. I already have panic attacks regarding the treatment or surgery required on my eyes that I needed some down-time to reflect at the end of each day in Boston to mentally prepare myself for the future.



The cost of attending the conference was tremendous but the value of the information was priceless. Having access to speak with some of the top doctors in the field was amazing. The most important thing I learned all weekend was:
“Be your own advocate.”

‘Good’ treatment for Graves is available in Edmonton; but ‘GREAT’ treatment is available elsewhere. There was a lady at the conference who had such bad eye symptoms that doctors had told her to put an eye patch on and live at home because they couldn’t help her. She decided that wasn’t a good enough answer after living confined to her home in shame for 2 years so she scouted out different doctors from the Kellogg Eye Center where they did multiple surgeries & she looks beautiful now. I learned that our resources in Edmonton are not the best for the eye issues associated with Graves considering we only have about 3 doctors thoroughly educated on proper patient care for the disease. When I told the eye specialists at the conference that I’m on a 10 month wait list in Edmonton for the same type of patients they see in their area; they were astonished. Sitting & waiting on lists is simply not acceptable after seeing how great American doctors take care of patients with the same problems. It is also not acceptable because if left un-monitored & un-treated; there is risk of going blind over time. The specialists in Boston assured me that with the severity of which the speed of the eye disease progresses; the waiting period in Edmonton is a completely unreasonable.  While this might seem like depressing news, it is quite the opposite to me. This is because I learned to feel confident in saying “no” to a treatment that I don’t feel is right for me & my needs (since Graves affects everyone differently). I feel confident in pushing doctors to give me the care I deserve and to start looking at my options elsewhere whether it be out of province or even out of the country.

 I was told by an Edmonton doctor that I would need multiple steroid injections to treat my eyes ASAP; but after attending the conference I realized that no one could possibly make that decision without getting a proper X-ray scan of behind the eyes to see damage the pressure is causing. The steroids are supposed to reduce early swelling around the eyes to stop the Disease from progressing; but what if you don’t know at which ‘stage’ your eyes are in? Anyone who has seen me recently knows, I look different than I used to. To this day; I have never had a doctor in Edmonton mention the use of getting an X-ray to see exactly what is happening behind my eyes, let alone send me for the test.. The scan would show if;
1) The fat has expanded behind the eyes (that’s what usually causes the bulging) or
2) If it’s the muscle that’s expanding.
If its muscle, it’s a much more complicated surgery to remove bone from your skull, allowing room for the eyeballs to expand into. If its fat, patients need to get an ‘eye decompression” surgery.  So to be injected with steroids that have a lot of dangerous side effects without accurately knowing the current condition of my eyes would be reckless.

So how was I so lucky to go on this trip? Because I have a family who cares and wants the best for me. My dad played modern day superhero & offered to pay for the cost of the entire trip so I could go learn from the best of the best in the field. More importantly; the goal of the experience was to simply ‘meet people who understand’. I met some truly wonderful people who live thousands of miles away but will always be held close to my heart & at the top of my thoughts. I gave out little cards during the conference with my contact information so we can always stay in touch online & I know some of them are reading this right now. So; Thank-you for the hugs, for being so honest & for sharing your deepest thoughts with me. I am grateful to have met such wonderful people; although I truly wish it was under better circumstances.

I am currently reviewing my options for treatment of my eyes so the next blog entry will hopefully be a post-treatment success story.  Unfortunately, recent test show that I may have a more complex heart issue & more testing is being done in the coming weeks which I will keep those who are interested up to date on.

Thank you to my Dad for giving me the opportunity to have participated in such a wonderful weekend & to my Mom for accompanying me throughout the entire conference. Love you!
-Rayanne

 
     
Me sitting on a turtle in a Boston park!