These are my follow up notes from the conference I attended in Boston, Massachusetts on November 4th-6th 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!
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