I thought I should do a post since you may be beginning to think that you’re being neglected. My lack of updating is most likely because of the non-existent excitement or news in my life right now. Which now that I think about it isn’t exactly a true statement but better to lump all of this news in together than write a dozen practically identical posts.
Rambling aside, my good news will shortly follow. I head across the border and on to Portland in just over a week from today. The Tuesday after this one to be exact. For those who don’t know what’s in Portland it is the National Marfan Foudation’s annual conference. I have appointments with some of the best doctors specializing in conditions like mine and am going to get to meet and spend time with other teens -77 to be exact- who also suffer from connective tissue disorders.
When I first realized the conference was fairly close to where I live (British Columbia) or at least was as close as it has been and will be for years there was only a seed of hope that I’d actually be able to go. But now I am going and I couldn’t be more grateful to those people and organizations that helped make it happen.
So, to the Shriner’s organization who is getting us there and back, paying for our hotel almost every night and many of our meals; thank you from the very bottom of my heart. You have made one of my biggest dreams come true and allowed me to take part in something that I know will change my life for the positive in more ways than one.
Second, I want to thank the Lion’s Club. You have further helped us to be able to go by covering the registration fee and for that I am also extremely grateful. This will be the second time that you have come to our aid when it was needed.
Once in Portland I have 6 appointments in 2 days, each of which are as important as the next. Thursday at 8:00am I have an ophthalmology appointment. These types of appointments I’ve done at least 50 times in my lifetime so I am used to them by now. It will be nice to get the input and opinions of specialists that have nothing to lose by admitting a mistake has (or hasn’t) been made during my eye operations. This way I know I can trust their observations.
Next at 11:30 am is my echocardiogram. This will be the first one I’ve had in nine months, since the last one showed that my aorta had grown slightly. There is a tiny part of me that’s afraid that it’s grown more, but mostly I don’t worry because I won’t know until I know, so worrying now won’t do me any good.
On Friday my appointments are back to back starting at 8:30 am. First we have cardiology to discuss the results of my echo. Second we have genetics which is fairly self explanatory. Then I go for a dental check up which will focus on my jaw problems and my crowded teeth etc. Last but not least I have an orthopedics appointments so we can talk about all of my bone and joint pain.
Saturday will be filled with conference activities like getting to know the other teens, attending educational workshops, a field trip on a cruise for a few hours, and a dance in the evening.
I’ll be spending most of my time separated from my mom since she’ll be participating in the adult activities. This is intimidating and unnerving for both of us. We aren’t super outgoing and have a hard time being around new people. But we’re also aware that this will be a good thing because it’ll make us step outside of our comfort zone. We’d also both really benefit from being able to talk to people who understand what our lives are like. Part of my nerves is my lack of socializing since I had to leave school. I am way out of practice with being around other people my age in large amounts. I’ll likely have to skip out on something because I get sore so easily and don’t feel good or sleep very often. But I imagine I definitely won’t be the only person in that boat.
So there you have it my near abandoned readers. I swear to you that I’ll be updating more often and will offer a full account of my adventures in Portland complete with pictures. Don’t give up on me yet!