Happy Spring folks!
I'm back with many new updates to fill you in on. I've been asked for months why I haven't updated my blog and have been sent many messages asking about how Graves is affecting me lately.
To be honest with you... I haven't been honest with *myself* lately.
I've been having a tough time with multiple symptoms and problems developing or reappearing.
For months now I’ve been taking on more projects and trying to forget or ignore the symptoms this illness puts a person through. Although I've been blogging for well over a year now, I still struggle with sharing my problems and pains with others. I rather be known as the tough chick who takes life head on than the complainer. But, of course - these are the realities of Graves Disease. As always, I strive to show the realness of this disease. The ups, the downs, the tears, successes and what to expect. But mostly, that I will not give up and that you can get through anything that life throws at you - with a smile still on your face.
So without further delay; I present to you;
Life with Graves Disease; Almost 3 years after diagnoses.
As I typed up my first draft of this post late one evening, I wrote the words "I haven't been taking care of myself as well as I should be. I thought of these words all the next day. How could I be spending my days working two jobs for other people and not taking care of myself too?
Before I go on... Let me tell you about the newest changes in my life and why my priorities have shifted lately…
First off, I am now a feature columnist at The Edmonton Examiner (with 2 columns now!) and also Youth Empowerment & Support Services new Community Engagement Coordinator.
My job includes being out and about in the city shaking hands and kissing babies with the great folks who hold fundraisers for our agency. It's a fun position that allows me to use my broadcasting background to connect on a deeper level with donors around the city.
If you would have told me a year ago that I would be out and about in the community interacting with people, I would have laughed out loud (and then probably cried at the sheer terror of the possibility!)
After my first eyelid surgery leaving me with wonky looking eyes; I hid every day in my dark room. I was boyfriendless, jobless and scared of leaving the house because people made fun of how I looked. It was like being back in high school. I truly believe that when you meet people, they are either a blessing or a lesson. My friend Stela from the U.S who I met via my blog had introduced me to a few months ago to some awesome tips and tricks (circle lenses!) that alter the appearance of my eyes and I haven’t looked back since.
My life went from hearing “why do your eyes look like that?” to “wow, your eyes are so cool!”
I have regained control of my life in some aspects. Although still noticeably different sizes; people are much more distracted by the unique color and appearance to notice anything else now. I have been asked multiple times to create YouTube Videos of how to do Graves Disease makeup and will be making a video soon for all those who asked! I feel like it’s the least I can do to help fellow sufferers to regain sheer normalcy back in their own lives and honor the impact Stela has had on my life.
Of course, with these new career changes come some health problems though. Within my first week of changing positions at both jobs (& being undoubtedly overwhelmed!) I had two episodes of extreme chest pain.
I have unfortunately been pushed under the radar enough times in "the system" that I now choose to silently suffer when it happens. Each time I've been to the doctor/emergency they can't help me unless it’s a rhythm problem or physical abnormality seen in the heart through an ultrasound because it’s very difficult to diagnose random chest pain.
While I constantly have a 'rhythm problem' (supraventricular tachycardia) due to Graves Disease, there is not much they can do to help for the random pains that seem to be mostly stress related. As I’ve said recently; "I can handle stress mentally but not physically."
In the past, I've seen one cardiologist that I had to actually explain the synopsis of Graves Disease to. As you probably guessed it; nothing came of that experience. Because of my age and the rarity of the illness in the city, the awareness and knowledge just isn't there yet. I am admittedly guilty of not being more aggressive with finding solutions to these problems because I’ve grown accustomed to feeling this way and people not understanding.
I'm happy to say that I finally gave my head a shake and booked a full physical with my family Doctor for next week where I will be asking for regular blood work instead of only testing it when I feel particularity ill. I will also be asking for another cardiologist referral and an echocardiogram to see the damage Graves has caused on my heart since diagnosis. The last one I did was years ago when I was first experiencing the rhythm problem but as this is an autoimmune disorder that attacks the function of different organs; checking on it now is crucial to understanding my chest pain treatment options in the future.
I am also still on the wait list for a second attempt at eyelid reconstruction surgery to fix the surprised look that the last eye surgery left me with. Surgery could be anytime within the next year. I am so nervous that they will alter the way my eyes look in a way that I won’t like so I am comfortably sitting with silly looking eyes for the time being.
I am seeing also a new specialist next week that will monitor my vision on a more regular basis as I am only currently seeing an eye surgeon between operations to measure how much they are moving forward again. Protrusion and bulging of the eyes causes blindness over time and I’ve been having troubles with seeing and difficulties around bright lights. I am ecstatic about having a regular doctor to monitor my eyes. I got referred to this specialist after a regular glasses shop optometrist couldn’t believe no one was checking on my eye health.
Secondly;
I would like to add that I am not a doctor, nurse or anybody practicing in the medical field. I'm a Graves Disease sufferer - and obviously closer to the problems associated with this little known disease than most people.
I'm back with many new updates to fill you in on. I've been asked for months why I haven't updated my blog and have been sent many messages asking about how Graves is affecting me lately.
To be honest with you... I haven't been honest with *myself* lately.
I've been having a tough time with multiple symptoms and problems developing or reappearing.
For months now I’ve been taking on more projects and trying to forget or ignore the symptoms this illness puts a person through. Although I've been blogging for well over a year now, I still struggle with sharing my problems and pains with others. I rather be known as the tough chick who takes life head on than the complainer. But, of course - these are the realities of Graves Disease. As always, I strive to show the realness of this disease. The ups, the downs, the tears, successes and what to expect. But mostly, that I will not give up and that you can get through anything that life throws at you - with a smile still on your face.
So without further delay; I present to you;
Life with Graves Disease; Almost 3 years after diagnoses.
As I typed up my first draft of this post late one evening, I wrote the words "I haven't been taking care of myself as well as I should be. I thought of these words all the next day. How could I be spending my days working two jobs for other people and not taking care of myself too?
Before I go on... Let me tell you about the newest changes in my life and why my priorities have shifted lately…
First off, I am now a feature columnist at The Edmonton Examiner (with 2 columns now!) and also Youth Empowerment & Support Services new Community Engagement Coordinator.
My job includes being out and about in the city shaking hands and kissing babies with the great folks who hold fundraisers for our agency. It's a fun position that allows me to use my broadcasting background to connect on a deeper level with donors around the city.
If you would have told me a year ago that I would be out and about in the community interacting with people, I would have laughed out loud (and then probably cried at the sheer terror of the possibility!)
After my first eyelid surgery leaving me with wonky looking eyes; I hid every day in my dark room. I was boyfriendless, jobless and scared of leaving the house because people made fun of how I looked. It was like being back in high school. I truly believe that when you meet people, they are either a blessing or a lesson. My friend Stela from the U.S who I met via my blog had introduced me to a few months ago to some awesome tips and tricks (circle lenses!) that alter the appearance of my eyes and I haven’t looked back since.
My life went from hearing “why do your eyes look like that?” to “wow, your eyes are so cool!”
I have regained control of my life in some aspects. Although still noticeably different sizes; people are much more distracted by the unique color and appearance to notice anything else now. I have been asked multiple times to create YouTube Videos of how to do Graves Disease makeup and will be making a video soon for all those who asked! I feel like it’s the least I can do to help fellow sufferers to regain sheer normalcy back in their own lives and honor the impact Stela has had on my life.
Of course, with these new career changes come some health problems though. Within my first week of changing positions at both jobs (& being undoubtedly overwhelmed!) I had two episodes of extreme chest pain.
I have unfortunately been pushed under the radar enough times in "the system" that I now choose to silently suffer when it happens. Each time I've been to the doctor/emergency they can't help me unless it’s a rhythm problem or physical abnormality seen in the heart through an ultrasound because it’s very difficult to diagnose random chest pain.
While I constantly have a 'rhythm problem' (supraventricular tachycardia) due to Graves Disease, there is not much they can do to help for the random pains that seem to be mostly stress related. As I’ve said recently; "I can handle stress mentally but not physically."
In the past, I've seen one cardiologist that I had to actually explain the synopsis of Graves Disease to. As you probably guessed it; nothing came of that experience. Because of my age and the rarity of the illness in the city, the awareness and knowledge just isn't there yet. I am admittedly guilty of not being more aggressive with finding solutions to these problems because I’ve grown accustomed to feeling this way and people not understanding.
I'm happy to say that I finally gave my head a shake and booked a full physical with my family Doctor for next week where I will be asking for regular blood work instead of only testing it when I feel particularity ill. I will also be asking for another cardiologist referral and an echocardiogram to see the damage Graves has caused on my heart since diagnosis. The last one I did was years ago when I was first experiencing the rhythm problem but as this is an autoimmune disorder that attacks the function of different organs; checking on it now is crucial to understanding my chest pain treatment options in the future.
I am also still on the wait list for a second attempt at eyelid reconstruction surgery to fix the surprised look that the last eye surgery left me with. Surgery could be anytime within the next year. I am so nervous that they will alter the way my eyes look in a way that I won’t like so I am comfortably sitting with silly looking eyes for the time being.
I am seeing also a new specialist next week that will monitor my vision on a more regular basis as I am only currently seeing an eye surgeon between operations to measure how much they are moving forward again. Protrusion and bulging of the eyes causes blindness over time and I’ve been having troubles with seeing and difficulties around bright lights. I am ecstatic about having a regular doctor to monitor my eyes. I got referred to this specialist after a regular glasses shop optometrist couldn’t believe no one was checking on my eye health.
Secondly;
I would like to add that I am not a doctor, nurse or anybody practicing in the medical field. I'm a Graves Disease sufferer - and obviously closer to the problems associated with this little known disease than most people.
As such I was very surprized to read this on the WEBMD site the other day;
"Although the symptoms can cause discomfort, Graves' disease generally has
no long-term adverse health consequences if the patient receives prompt and
proper medical care."
How could there 'not' be ongoing problems with a disease that randomly attacks
the body? Currently I have had these
organs 'removed' from my body:
-Thyroid Removal
-Gallbladder Removal
&
-Orbital Decompression
-Blepharoplasty (Eyelid removal surgery)
All in relation to the disease.
I am on Synthroid (thyroid hormone replacement) & Bisoprolol
(Heart pill to control rhythm) that I take on a 'daily 'basis and will for
life.
This past month I was also surprized when I went to my Dentist appointment for
what I thought was just a checkup and a small tooth ache.
Adding to the list of complications, I was told I have not 1, or 2, or even 10
cavities. I have 14. All of which, developed since 2010 (The last year I saw the
dentist and the year of my diagnosis)
The Dentist was knowledgeable about Graves Disease and tells me that the reason
I have so many cavities is that Graves Disease and the medications that I take
are altering the amount of saliva in my mouth.
Saliva 'protects' the teeth by constantly washing them and my mouth is often
very dry and causing the teeth’s enamel to be worn down very quickly, letting
cavities form faster than the average person.
Cost to fix? Just over $4,000.
As I 'age' I'm discovering more and more about this disease and that I need to
monitor several things on a 'daily' basis. I'm almost certain that as the
disease moves around my body and attacks; I indeed will have some form of
"long term effects" because of it.
Long story short, it's tough feeling mentally, physically and emotionally drained everyday.
So WebMD – I ask of you to study this disease a little further to be totally in
touch with people who need this information.
In addition; if you have not checked out this website yet - I suggest you do:
It chronicles the 300+ (yes, really!) symptoms that someone with a thyroid disorder feels and goes through on a daily basis. Read it, share it, and help someone else get a diagnosis before the deeper problems appear!
http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really
http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really
As my own website hit over 20,000 read this week, I am again humbled to be
share these new discoveries with you, my readers, so that you may use this
information to protect yourselves from going through some of the issue I have
had to because you will be aware to look for them.
And finally; I want to share with you something I have recently discovered that
both inspires and empowers me to find the beauty in my story. It is my new
passion, catch phrase and motivation. I have always believed that scars are the
badges of honor you wear to show the world how TOUGH you are! Finally, I found
someone else who is showing that “Scars are Sexy!” in her own way.
Rock Scar Love is a modern, trend setting clothing company focused on
helping individuals with physical, mental and emotional scars to embrace
the lessons they represent. Owner and creator of the brand, Amy Tippins believes that scars are sexy and when
embraced they can only change lives for the positive. The company aims
to provide scar owners a way to tell their story and inspire others to
live passionate lives.
The story of RockScar Love began when Amy had a liver transplant. “My scar made me feel imperfect, but over the years I have learned that imperfection is my perfection.”
The shirts (& other gear!) come in a variety of colors and slogans including the cheeky “You show me yours and I’ll show you mine!”, “Privilege of the scar” and “Scars are sexy!”
I ordered my first T-shirt tonight and will be posting pictures in my new gear as soon as it arrives!
Website: http://www.rockscarlove.com
In keeping with the theme; I leave you with an empowering video to remind yourself that no matter what you’re going through, your strengths, weaknesses, scars, illnesses and issues- you are more beautiful than you think.
I will keep updating as I visit my various specialist’s offices and as new developments occur. From me to you, no matter where you are reading from; I wish you enough love, tranquility and strength to get through the difficult days.
"Today I choose happiness over illness. Today, I will not worry. Today, I will let go of all that makes me anything but blissful, energized and peaceful. Nothing can steal my smile."
-Rayanne
