Thursday, 2 February 2012


So I have to say that I was overwhelmed by the support and the outpouring of positive responses from people towards me starting this blog. I have to admit that I was very nervous about people's judgments as I am very aware as to how difficult the past 10 years have been for some close people in my life. Friends and family have watched me go in and out of doctors offices and be given numerous diagnosis - they too have in a way been the patient.

On January 10th I had the most interesting of all appointments. I met with Dr. Bogod at VGH for Neuro-psych testing. This is where they test for a general base line of cognitive functioning, and test as to where my abilities are in several different areas such as memory and attention as compared to women of my age and abilities. It was incredibly interesting to learn about and even more interesting to do the tests. They begin the exam by taking a thorough history of me, as well as asking my Dad numerous questions in order to make sure that I wasn't completely off my rocker and making myself sound amazing (which in my recollection I totally was LOL). After the history taking I did endless tests that I thought were ALL memory tests. To all the parents out there, that memory game that you play with your children IS very important! I played games where I had to pick out numbers from words and vegetables from fruit and from objects. All in all by the end of the day, I was exhausted and needed a good nap...or a glass of wine (don't let my husband or neurologist read that part).

I am partially prepared to hear that there may be changes in my cognitive abilities, however it is very hard to reflect upon ourselves and to really notice when we might be losing some of our own abilities to do some things. I have taken such pride for my entire life on being educated, well-spoken, articulate, and being quick and able to multi-task. I know that from feed back in the work force that I am not the same person that I still believe that I am. It is going to take time to come to terms with that though.

I have to say though that the waiting game for Doctors results never gets easier, even with time. I just get better with coping with it. So as I sit here distracting myself with my absent minded evening soap shows, my tea, and my beautiful quilt that my mom made me...I know that I can handle the results but sometimes I still wish I didn't have to hear them.

It was wonderful to meet Dr. Bogod though. I had heard, read, and learned lots about him during my years of study and was impressed to meet him, and to find that he is surprisingly young with a warm bedside manner. He is very well educated and knew a large amount about Neuro-behcets...I don't know if that is because he has worked with it before or because he googled it. During my recent IV Steroids in October I had nurses and Physicians coming in to speak with me and they had Wikipedia results printed off in their hand. That is never reassuring - but is super funny too!!! Try to imagine a Dr trying to act professional and knowledgeable as they stand there reading off a google printout. I hate to be rude to them but there are better sites than Wikipedia.

So if you are curious as to what a baseline cognitive functioning report is then check back on Monday and I will fill you in!

By the way I had an amazing Honeymoon! Here's a photo to prove it!

Until next time....Colleen :)


  1. Colleen, you're so amazingly strong. You're going through this with such grace and humour... I'm happy for you that you finally got your diagnosis, and for the strength you have to share it with the world! You look beautiful in all your pictures. You call yourself "educated, well-spoken, articulate" and goodness, you certainly are that!

    1. Dana,Thank you so much for your words. I really appreciate you both taking the time to read my blog and for taking time to write me such a thoughtful and warm comment. I was truly touched by your words. I hope you are doing well, your daughter is growing up so fast!!! xo Colleen