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.
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.
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.
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