It’s Thursday already?

Finally, an update! How is it that the days seem to drag on forever yet at the same time they’re going by so ridiculously fast? I had meant to do an update last week!

I’ve been feeling rather introspective, perhaps it’s a day for it because my good friend Benjamin seems to be feeling the same way! Actually, I’m rather moody as of late. I fear that I’m slipping back into one of my major depressive episodes. The holiday season seems to only be making it worse. I think that I’m still harboring sadness and anxiety over how last Christmas turned out. It seems like I have a hard time letting emotional pain go. The more sadness that creeps it’s way in the more I find some painful memories stealing their way into my thoughts along with it. I wish that I could be numb to both the physical and emotional sometimes, that I could forget some things that have happened. Life would be so much easier that way.

Knowing that I might be falling back into a major depression but not being able to stop it is terrifying. And, I wish that it wasn’t happening around Christmas, I don’t want to ruin the joy of it for the people that I love. It’s times like these that I wish I could be medicated for the depression. Even with the awful side effects and conflict over putting toxins into my body, I just want to get better. But, thanks to the urinary retention side effect that’s not even an option anymore.

Painwise, I could be doing better. My hip subluxated about a week ago. It went back into place fairly quickly but it’s been really sore ever since. My tailbone is also dislocated again. I’ve been looking into the tailbone removal surgery, but it sounds like it’s one of those gambling decisions where you might just end up worse off than you already were. And, with my tissue disorder, I think it’s best not to mess around with surgery unless it’s straightforward and 100% necessary. Besides, I’ve been dealing with the tailbone dislocations for as long as I can remember. They’re getting more frequent and they’re painful but I can manage them. 

I found out today that I’ve been approved for an appointment with one of the best orthopedic specialists in our province. It’ll likely be in mid March at the Children’s Hospital. We’re going to line it up so that it coincides with my echo there for the Marfan/Loeys-Dietz clinical study my pediatric cardiologist is doing as well as my appointment with my new “adult” cardiologist. Two echos in a matter of days isn’t ideal, they’re very painful because of my rib problems, not to mention that doing two of the exact same tests seems a little pointless but we have to attend our appointment with my new cardiologist within a year of the referral or the process has to be redone. I’m nervous about meet two new doctors. I’m always afraid that they’re going to be jerks, but I’m hoping because one is a highly recommended specialist and the other works with children for a living that it’ll turn out okay.

Winter by Dieter Thau

I hope that all of you are doing well tonight and that you’re enjoying your holiday season!

Marfan Syndrome Clinical Study

During my cardiologist appointment at Children’s Hospital the doctor asked me if I’d like to participate in a clinical study they’re conducting. The title of the study is: Cellular mechanisms underlying vascular dysfunction and aortic aneurysm in Marfan Syndrome. It  involves testing the blood of various people who are either affected with Marfan Syndrome or Loeys-Dietz. By doing this they’re trying to identify potential chemical markers in the blood and tissue that can be used to diagnose and treat MFS earlier than we can now. This study is part of a larger study designed to better understand how the aorta is damaged in patients with MFS.

They’re asking for anyone between the ages of 8-60 who meet the diagnostic criteria for MFS or LDS and would like to participate. The entire thing would involve being measured, weighed and having your blood pressure taken, followed by a physical examination and a detailed cardiovascular evaluation. Approximately 2 tablespoons of blood will be drawn, and an echo and ecg will be performed.

This is all taking place at the Children’s Hospital in Vancouver BC over the next 4 years. The entire thing should take about two hours.

I’m going to participate, so, I guess I haven’t officially said goodbye to the Children’s Hospital yet after all. I’ll be going back to Vancouver for my yearly echo and eye checkup next year and will likely be doing it then. I think it’s really interesting and I’m definitely eager to see the results. If anyone reading this who meets the criteria for MFS or LDS is also interested in being involved in the study just email me at katie.robertson@live.ca and I’ll give you the information you need.