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…
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
