"Challenges are what make life interesting; overcoming them is what makes life meaningful."

This post is about the effects of this bracelet. While made of delicate removable paper, it never truly 'disappears' when dealing with a long term illness. I have more of these in my memory box than most girls have of actual jewelry accessories. The bracelet symbolizes some of the worst days mentally and physically of my life. Sadly, it is also dictated by it. Every time a person visits a hospital for an appointment or surgery, it is there to welcome you. To mark you as another inmate behind the invisible prison bars of the hospital walls.

I normally try to avoid writing on days where some aspect of this illness has made me upset. However, if i want to be realistic with my readers while batting the evil side effects of Graves; keeping a constant smile on my face sometimes gets tiring.

 

My biggest struggle is reminding myself not to feel guilty for being sad on rough days. Well I don't let myself have many of those, today left me feeling particularly soul numbing.

I went for my post surgery visit with my eye surgeon today where it began like every other visit I had been to previously... with freezing drops being put in my eyes. This time is was especially unpleasant considering my eyes are still very tender from surgery. To describe freezing drops to someone who has never experienced it, I'd say it's more like a liquid that freezes your eyes in the forward position rather than a numbing agent so you wouldn't feel pain. Although i am not 100% sure, it seems to act as an aid to the doctor when using instruments to uncomfortably measure eyes while running tests.

After my measurements, I asked the Doctor what the difference in my eyes are since the surgery. They had taken 4mm of tissue out from behind the left, and 5mm out if the more bulgy right eye. It may not seem much, but in eye positioning measurements, that's HUGE.

(click to enlarge)

Technology is amazing because when telling a doctor that I still have post surgery double vision, I had no idea they have ways of not only confirming it, but they can tell exactly which way (up/down or side-to-side) the double vision is occurring in each eye. I was told that it should go away, but it is not guaranteed and still has the potential to require further surgery on the eye muscles to correct it.

Because of the severe lid retraction, I was also given the date of my next surgery (Lucky number #5?)

October 18th 2012

The definition of lid retraction is when the top of a persons eye lid sits abnormally high and can only be corrected through surgery. It leaves sufferers with the appearance of always being welcomed into a surprise party. While an appropriate reaction to an unexpected event, it is not as cute to always be walking around resembling as so.

My eyes used to sit perfectly pre-graves diagnosis but through repositioning them, things shifted and now need to be adjusted. I think what makes me the most upset that I have to walk around until October with abnormal looking eyes since it is the first thing everyone notices about you when you meet them. Although i squint to project a more normal appearance, it isn't an 'easy fix' with false eyelashes like proptosis was. So, pardon me while I wear my sunglasses in public 24/7 for the next 5 months.

This surgery will be more focused on flipping the eyelids inside out and doing the cutting/removing of extra eyelids from the inside so there isn't a visible scar, and yes, it is all preformed while awake. Que panic attack. It also has a 2 in 10 chance of scarring the inside of the lids so bad that they would sit at different places on the eyeballs that would require 2-3 more surgeries to fix.

Depending on the outcome of the upcoming surgery, I could be (hopefully) finalizing my hospital bracelet collection, or adding up to 3 more.

In January my family had to cancel a trip to Hawaii to accommodate my medical situation, and now the trip we had been planning to take to San Diego in October for the yearly Graves Disease conference is cancelled in light of my newest surgery date. I would like to appologize to them now for always being the source of the cancellations.

Pondering my options for work while anticipating this upcoming surgical adventure has left me scratching my head. I feel like I should be used to completely rearranging my life to accommodate this cruel disease, but the stress of the unknown is weighing heavily on my mind this evening. Feeling like I'm missing out on so many great experiences and memories like most people my age to accomidate a life lived in and out of hospitals can get even the toughest soul down sometimes.  

Challenging events like these remind me how grateful I am to have a family who lifts my spirits (my mom made my favorite homemade veggie soup and shortbread cookies today!)
Aswell as an online following that sends me such positive energy...

 

But if anyone has a rabbits foot, crystal ball, four leaf clover or wish bone they can spare for good luck; can you maybe send it my way? ;)

”Even though you may want to move forward in your life, you may have one foot on the brakes. In order to be free, we must learn how to let go. Release the hurt. Release the fear. Refuse to entertain your old pain. The energy it takes to hang onto the past is holding you back from a new life. What is it you would let go of today?"

-Rayanne

“I certainly don't regret my experiences because without them, I couldn't imagine who or where I would be today. Life is an amazing gift to those who have overcome great obstacles, and attitude is everything."

I wanted to post an update on my situation and share with you something I am very excited about. For those who have not heard yet..‎.

I am meeting with CTV Edmonton's Carmen Liebel soon to create a story for Graves Disease awareness. My mission since day 1 has always been to educate people on this mysterious illness and through my blog, print & tv ... I will get there; so the patients of the future will be more accepted in society than I had been at times. (If you miss it when it airs, don't worry; I will be posting the video on my blog!)





 I am a few days away from my 1 month post Orbital Decompression Surgery date. After many uncomfortable weeks, most of the healing is complete.

Is my double vision gone?

Mostly but not completely. I can see distance easily but when I need to see something close up I still get bad double vision. This has left me with some clownish make up and interesting hairstyles on some days. It is impossible for me to look any direction other than forward without straining my eyes and getting blurry double vision. I feel frustrated and trapped in my own body loosing the perfect vision I used to have. I also find it overwhelmingly stressful to be in crowded areas because I can't get a full visual of my surroundings.

Do my eyes still hurt?

Yes. My eyes bled multiple times up until about 2 weeks after surgery. I can't rub them and wiping off makeup is a time consuming project because I need to do it so slow and gentle so as to not irritate my already sore eyes. I also noticed my inner rim lower lash lines and tear ducts are completely numb. I have zero feeling to the touch which is a very awkward feeling.

Am I 100% happy with the results?

No. I wish I didn't have double vision which I am worried will stay that way permanently since it still continues after the swelling is gone. I constantly tilt my head upwards a bit because somehow it is the easiest way to get the clearest vision although that creates the "staring" appearance I had pre-surgery. It will stay like that until I get the second part of the surgery to lower my eyelids to accommodate the new position of my eyeballs. Is it an improvement cosmetically looking? 

Yes... But was it worth it? I am still deciding.

Do I look exactly how I used to?

No, and it's difficult to accept that I never will again. However;

“I do believe that when we face challenges in life that are far beyond our own power, it's an opportunity to build on our faith, inner strength, and courage. I've learned that how we face challenges plays a big role in the outcome of them.”

So, I debut to you, my new "peepers"
As of 23 days post surgery...




 


I have a follow up booked with my surgeon on June 16th where I will most likely get a general time frame for the date of my next surgery called "Blepharoplasty". It is a surgery to remove and lower part the eyelids and is preformed while the patient is awake. <--- (Why?!!)

It produces the same type of swelling and needs the same recovery time/after care as my last surgery. I will post more information about this super-creepy operation when the time gets closer or feel free to click the link below for some fantastic information with some before and after surgery pictures.

http://www.eyelidsurgery.co.uk/treatments/blb-eyelid.htm





I would like to extend a great big THANK-YOU to all my wonderful Facebook friends and Twitter followers for sending me so much love and encouragement while I was bed ridden. You were the sunshine in my recovery days and thank you for thinking of me! Throughout this terrible time in my life the highlight has been making 'many' new friends for which I am very grateful.  Your support has meant everything to me and I greatly value my new friendships!





I'm a big believer that the day is wasted if you don't utilize it to learn at least one new thing.

Therefore; I present to you;

Did you know? Graves Disease Edition...

-Graves’ disease was first discovered by Robert Graves in 1835, who linked a pattern between a patient’s goiter with other physical manifestations.


-Graves’ disease affects women 10 times more commonly than men.


-An autoimmune disease occurs when the body's immune system becomes misdirected and attacks the very organs, cells, or tissues that it was designed to protect. About 75% of autoimmune diseases occur in women, most frequently during their childbearing years.


-Graves' disease occurs in less than 1/4 of 1% of the U.S. population.


-Some things we're told are good for us -- like fluoride and soy -- are not good for thyroid health.


-People with Graves disease must avoid food items that contain iodine. The thyroid gland uses iodine to produce thyroid hormone, so too much iodine exacerbate's Graves symptoms.


-Only 5% of all patients diagnosed with Graves disease will have eye symptoms severe enough to warrant an orbital decompression surgery.


-Did you know this blog was purposely created with a dark background because it is the easiest to view on sensitive Graves Disease eyes?

Now you do!






Thanks for stopping by; I will update again soon!

-Rayanne

"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