Anniversary

A year ago on September 25, 2011 I woke up married, although, I couldn't exactly remember that I was married. This is part of my story that I haven't told entirely. I woke up at about 5:30 am (I think it was about 5:30) on September 25, 2011 and I could only vaguely piece together what was happening to me. I felt like I had been hit by a bus. It was like someone sitting on my brain, and I needed them to get off of it. I couldn't see straight, think straight, or exactly remember what happened. Once I pressed my brain hard enough, after this horrible nurse lectured me that I was going to have a hangover, which at that particular moment didn't make any sense to me, I was able to recall the final moment of the evening which was pretty blurry - and that was taking pictures with my Photographers by the fire place. Yes, I was married.

I have spent the last couple of days re living moments of our wedding and remembering all of the beautiful moments. Sometimes I just lie down and close my eyes and let my brain get flooded with memories of the past years, just because I can remember, because a year ago I thought I wasn't ever going to remember properly again.

Our anniversary has not just meant a year of marriage it has also meant a year of remission, which I am so thankful for. Those of you with this disease will understand when I say that I have still had flares, my most recent being a few weeks ago, however, I have successfully managed to stay out of a relapse. We are comfortably settled in the North, and the most amazing thing is I have a fast paced, full time job that demands me to fire on all cylinders. If you had asked me, or any of my Doctors a year ago if I would be working in that capacity, we would have all said no. But I do!

I still sometimes struggle with drumming words up in my head or tripping over words, but I know that it will only last a little while and then I will come back again. I practise reading, and push my writings skills, and challenge my linguistic skills. We did it as children, why not as adults?

September 24, 25, 26, and 27 will forever be special to me as it was when I married my best friend and found out I was diagnosed with a rare disease that forced me to choose the path in life I always wanted to choose. Isn't that funny about us? That we wait for something big in our lives to happen before we listen to our inner voice that is telling us to do what makes us happy?

I hope that each and everyone of you who comes across my blog doesn't wait until your memories start slipping out of your mind and your mind becomes a blur. I hope you don't wait until the day you wake up each morning with flu-like symptoms and pain in your arms that you have to ignore and smile through so that nobody notices. I hope you don't wait until you are too tired to do anything. I hope you just don't wait. Hug, kiss, try something new, and do what inspires you, lights your flame, and makes you smile a thousand smiles.

I will probably update again closer to my next Neuro appointment in November! I am meeting with my neurologist again - everything should hopefully be moving forward toward good health and the hopes that in the near future we can start planning for a family :)

Some people including my Doctors have asked why I haven't gone to the Mayo Clinic yet. It's simple, I am having fun right now. I feel good and I do comprehend that as much should be done preventatively, but right now I am enjoying being 30, married, and working. I need that right now, and when I feel the moment is right, if there ever is a moment again that is needed to be right, I will go to the Mayo Clinic. Sometimes having fun though is better than hearing another perspective :)

I hope this finds everyone well and healthy on their journey!

Soar High and Live in the Moment!

Results

Well I finally found some time in my busy schedule to update my blog to say that my results were AWESOME!!! I also have to say that it feels so good to say that I have a busy schedule :) There are so many of us that complain about work and how much we work,  and that we have to go to work, and ask when is our next break, lunch, day over etc...but if work was taken away from you, and you were forced to sit on your couch while everyone else continued making money, and continued their independence....do you think you would miss it? Really think about it? Of course for the first few weeks it would feel like the most amazing vacation, but then imagine, you can't do much but rest, and you can't go anywhere because you are not making money, and you can't share in stories with your friends because you are not working....so really you are the odd man out. Daytime TV, is terrible, reading becomes tedious, and everyone will tell you to get a hobby....to the point that people telling you to get a hobby becomes a hobby. Everyday is Friday. I am in love with working again, I love that I have somewhere to go, something to think about, and something to strive towards. I love that I have something to identify with and most of all something to feel passionate about. I probably will never complain about when is it Friday again...because I know there is someone out there waiting for a Monday to come back into their schedule.

I found out on Monday that I have no new lesions or progressions. I was elated, however I didn't think I did as I feel very sharp and clear in my mind right now. I will be flying back down to have my eyes checked out as I have been having a bit of light sensitivity, which is a common problem with white matter diseases, and to do some peripheral nerve testing. Beyond that....I am good to go until November :). I felt like a huge weight had been lifted off....I will be at my one year mark at the same time I have been married for a year. What a better way to celebrate an anniversary then to be in full remission :).



I feel pretty lucky and fortunate right now. I have a career that entails everything I could have ever wanted in a career and I am married to a man that has stood by some pretty scary things in the first six months of marriage, and I have ridden through a relapse of my disease straight to remission :).

I hope you enjoy this photo! I chose it because my grandmother is just so strong right now. In January she fought back tremendously from a deep stroke. She still smiles, remembers, and has lively conversations. It has always been my grandparents that have taught me resilience. She is a beautiful woman to the core. 

Until the next blog!

In Health and Wellness,

Colleen :)

Results Day

Today is results day. To anyone who has had to receive medical results for themselves or for a family member they know what this day is like. In the days leading up to today it feels like you are somersaulting through emotions - sometimes flying through moments because you just don't know how to feel anymore.

In my situation, which is not really that unique, I haven't lived the diagnosis for that long. Prior to September the results day often just meant another day of seeing the doctors where they would speculate another disease path or tell me their theory on what was happening with my body - giving me some positivity with that hint of "who knows what is going to happen" - always enlightening for a young person in their twenties.

Now that I have the diagnosis...it is hard to still believe, hear, and read the results. Sometimes it feels like I am living someone else's life that I can't help, control, or change. There is a part of me that feels that if I eat healthy, rid myself of as many chemicals such as parabens, sulphates, etc (this was a new kick I got on this last progression) and take my medications then I will halt this disease in its tracks. It makes me feel that I have some control.

For anyone going through this though, there is the sadness of the still what is lost, the anger towards what is happening, and fear of the unpredictability of the disease. These are natural feelings to feel, and I can say that I feel them each and every time that I go forward to results appointments, and so do many other people I know who face disease.

At least I can happily say that despite whatever is said today, I will still go back to Fort St. John at the end of today to a career that I love and my husband that I love. Two things that I thought would never happen because of having a chronic disease but did. So either way, I am happy, and as my Auntie says there are angels on all of our shoulders :)

Stay tuned for the results....and here is some "little Miss Sunshine" to brighten some dreary Vancouver weather...someone asked me to bring the Fort St. John sun...I tried but here, I will try a little harder ;)

Back to the Coast!

Well It sure has been awhile since I last blogged. Which is a good thing! Only good and fantastic things have been happening in my life! It means also that I have been able to keep the doctors at bay in my life.

So I turned the big 3-0 and well, I really don't feel that much different except that I really should have my life together by now? but do we ever? I had a wonderful birthday dinner at a Vancouver restaurant Chambar with my parents, and two of my aunties. My husband was away working so he missed out on this awesome dinner experience!! I also went to my first opera! My parents had taken me to musicals when I was younger, "Les Miserables, the Phantom, etc." however, I had never seen Opera. We saw Renee Fleming and she was fantastic. She was very engaging and modern....overall if you haven't given Opera a chance, check her out!

The week after my actual birthday my beautiful sisters threw me a party with my friends at Revel Room in Vancouver. It was a lot of fun but very emotional as my husband and I moved out of Vancouver to Fort St. John the following day. For me, this was my first time ever moving away from Vancouver. I will start a different blog about our move to Fort St. John and what that is like.....I need a whole lotta paper to cover all of it!!

My best friends gave me a charm for my Pandora bracelet that represents journey, for the journey that I have been on and that we have been on. It couldn't mean more to me right now as my journey continues to have bumps in the road as it always will but I think of my wonderful friends (and family) and I am filled with so much love and smiles to get over the bump :)  I am a huge believer that your friends are your number one therapists! I hope everyone friends like I do :)

Overall though you can imagine the last month and a half have been bubble wrapping wine glasses, and playing tetras with the boxes in my apartment in Richmond, only to do a five day road-trip with a 24 foot uhaul and 24 foot cargo-trailer to Fort St. John, and unpack it all. I had a lot of stuff that was bubble wrapped, and now my apartment is a child's dream house!!!

 

 

 Right after I finished unpacking my boxes, I had to jump on a flight back to Vancouver for a week of doctors appointments as this was my six month mark since the diagnosis of Neuro-Behcets. A few things have been happening over the past few months, one of which is that I have been feeling progressively fatigued, nauseated, and short of breath, with the occasional heaviness in my chest. Sometimes I feel so short of breath that I find it difficult to move around. I had seen my internist in January about it, and he had said that it appeared from my blood work that I was "heading" into a folate deficiency and that we needed to watch my blood work. I should note that it is hard for specialists to get that alarmed by the above symptoms that I have mentioned because I have a systemic disease. This means that my whole system gets sick, and the "common" symptoms complained of with this disease are flu like symptoms, fatigue, and nausea. So they are not going to jump on my complaints the second I say something, however they are monitoring my blood work and how my medications are affecting it. During this visit I did my routine blood work which showed that over the last four months my white blood count and red blood count have both dropped to outside normal ranges, with some other irregularities all of which are usually a result of the medications. I find this very frightening, even though I rationally understand that Imuran's job as an immunosuppresent is to suppress my immune system. I am still so confused as to why I do not feel well....and if that is just the way I will feel now that they have achieved a "suppressed" status with my immune system....

I am a very involved patient, probably over involved in many cases. I read and follow my blood work the minute it comes on line and I read my doctors letters that they send to each other because they are also posted on line through UBC. I try to stay one step ahead of everything, and the reason I do this is because for so many years they didn't get it right, but now I wonder if  my lack of faith and trust, is causing me unnecessary worry. They are, after all, still the physician and I am still the patient.

So where am I at right now and why have you not heard from me for awhile? I started this blog to help people understand that there are some people that may seem to be perfectly healthy and be really fighting a hard battle inside. I also want to tell my story as I wade through this disease the best that I can. I do not know what the results will be on June 11 of my MRI, and I am trying to let the thoughts of "what if" just slip out of my mind. I have been down this road so many times and allowing the negative thoughts and sadness to overwhelm you is not productive nor helpful for the disease. This disease needs peace, rest, and relaxation in order to make it to remission :) I am working with my medical team to gather my medical charts to send to the Mayo Clinic as well. I made the decision with my family recently that due to the rarity of the disease that we wanted to see the Mayo because they have seen so many cases of Behcets, and Neuro-behcets. I am very nervous and excited all at the same time. I know that after I see the Mayo Clinic, I will have a much better understanding about how this disease will take its course and how I can steer the vessel in the best direction.

So as you can see I have had a lot to do and a lot to think about :) My trip on the coast has been both emotional and wonderful. It was so fantastic to see all of my friends and family, and to finally see the sun break through the clouds on my last weekend here.

While I was down here an ex-colleague of mine tragically died, however she leaves behind a wonderful legacy, especially for those of us who are chronically ill, and that was to laugh and live each day to the fullest. She embraced each day with a smile from ear to ear - a smile that could make a room light up, and make you think she had a secret :) The sun shines brightly these past few days for you Lenami :)

I met a very brave young lady a while back who is courageously facing Neuro-Behcets at age 16. She sent out an email with her birthday with and she would like people to donate to the American Behcets Association  down in the US. Unfortunately Behcets doesn't get a lot of attention and I thought this was a brilliant way for her to make a contribution to research in this field. If anyone would like to help - her name is Kenzie and here is her link:
http://wishes.causes.com/wishes/459468?bws=email_to_friends&m=1ac83f93

Well that is all!

I hope everyone is enjoying the beautiful Vancouver weather! Tomorrow we start our journey back to the North again :)

Colleen

The sweetness of living in the moment!

I feel like so much has happened in such a short period of time! It has definitely been a roller coaster since my last post - but I am so happy to say that this post will end with some wonderfully delightful news.

A couple of weeks ago I finally saw my Epileptic Neurologist, which as I previously mentioned, has been a neurologist of mine since I was about 24 years old. This didn't go as smoothly as I had hoped. I found that either she wasn't prepared to see me or she had a lot of judgments about the diagnosis that my other neurologist has given me. This is not uncommon in Medicine and this is something I feel I need to briefly touch on because I feel that what happened at this meeting is why so many people have been so perplexed, confused, upset, angry, and had many judgments about what and "if" anything is really wrong with me.

Medicine is clearly not always a concrete science as much as we desire it to be. When we go to see a doctor we hope that they have all of the answers in the world, and we almost expect them to be superhuman. We forget that these individuals have emotions, judgments, and competitive natures about themselves. When you become a patient in a specialty such as neurology, the judgments between Physicians amongst their sub-specialties can be very overwhelming. I have been a part of this for years...the back and forth, and tug of war, the school yard battle. However, many people do not know what physicians are talking about and therefore what I have been through and the laundry list of diagnosis and opinions has been mind boggling to say the least. I have to remind myself that my Physicians are human, and they try their best to keep their opinions to a dull roar, however, they really each believe they are right and that they each have my best interest at heart. It has been my job in the end as the patient to encourage communication amongst my medical team - to help remind them that I AM HUMAN TOO.

When I arrived at my appointment with my epileptic neurologist, the appointment quickly became overwhelming and I felt like everything was unraveling again. I felt like the consistency of the past six months was quickly flying out the window and this neurologist was turning everything upside down because she did not believe that I could possibly have a rare neurological disease such as Neuro-Behcets. She asked me to explain how my other neurologist came to this conclusion. There I was trying to explain an MRI scan....and people wonder why I read up on my illness and always try to understand the medical terms....you never know when there will be a pop quiz. Here is the battle, an epileptic neurologist is not trained to diagnosis white matter diseases and a white matter disease neurologist is not trained to diagnosis epilepsy....confused yet??? In the end of the appointment, I felt deflated and a bit like I was losing faith in my entire team because I felt that my epileptic neuro should have read more into my chart, and should have reviewed my scans more, but maybe she hadn't been given the information - either way there was a break in the communication and I am not the one that should have be filling in the blanks. Shortly after that appointment I received my Notice of Cancellation from ICBC notifying me that I am to surrender my drivers license due to my seizure on September 24, 2011. All in all, this was a low point....

Now, on to the fabulous news. I just got back from a week in Fort St. John where my husband and I are relocating to at the beginning of April. We are thrilled with what opportunities this move will bring us. I will of course still be flying down to the coast for medical treatment, and some family time :). Today I followed up with my main neurologist that treats my disease. I first explained to her how I felt after my appointment with my epileptic neurologist. I told her that I did not want to go down the route of having a million different opinions again, I asked that if the medications are working, then why couldn't I just leave everything as is? Why do I have to know if my seizures are epileptic or non-epileptic? She said she understood that I felt overwhelmed by the appointment but the importance is to do with treatment. She said that if a patient with Neuro-behcets is having an epileptic seizure that is uncontrollable then a coma will be induced, if it is non-epileptic in nature then no coma will be induced. She said that it is important that I trust the process. I encourage other patients who find themselves in similar situations as myself, with multiple physicians and multiple opinions to speak up! Tell them when you feel frustrated by the conflicting opinions, and the bashing of sub-specialties. This is your right, you as the patient are not the go-between. You have enough to deal with, it is there responsibility to aid you through this process. When I explained this to my neurologist, she was happy to write another letter to my epileptic neurologist explaining again what role she needed her to play and that was to asses epilepsy vs. non-epilepsy.

The most wonderful news of the day was that after just getting my Notice of Cancellation, I will be getting my drivers license reinstated!!!!! I am doing very well right now and overall my neurologist is very pleased with my progress and with my overall health! I was so happy to hear this :) She said that she would like me to rest up for a few more months and then I can try to find employment! I know for some of you  that sounds funny as to why I would find that exciting but that is thrilling for me!!!!! I will have my follow up MRI in two months so there might be even more fantastic news to come :) This was a day of great moments!

I am including a photo from my wedding day that just sums up my happiness that I am feeling today!

Fielding Questions....

Do you remember when you were younger and you had that first experience at the doctor where you had to wait for test results? I do. I remember my mom telling me something that never really made sense until this point in my life and that is, the Doctor WILL call you if there is something wrong. If there isn't...don't expect a call; my mom's favorite line, "no news is good news!!!". Very true!!! I first learned how this really works when I went through my initial potential "MS" diagnosis. When my epileptic neurologist felt it was necessary to send me forward to the MS clinic, I had an appointment there within a couple of weeks. Once I started going through the process, my neurologists would phone me to check in and see how I was doing and to follow up with me on results. This was scary, because I knew that this meant that we were dealing with something that this specialist felt was urgent enough for them to speak with me at home. As time has gone on though, I began to become a regular patient again. I would get bumped for more urgent patients and overall I went back to the real world of they will call you if something is wrong.

Currently as you know I am seeing what seems like the entire medical field in Vancouver, but I have been waiting to get back into see my Epileptic neurologist who I originally saw back when I was 24 years old. My other neurologist that manages my Neuro-behcets, had made the re-referral back to this neurologist at the end of December. I was a little surprised when I was sent a letter in January stating that my appointment would be June 28th, 2012, as I have been a previous patient of this particular neurologist. However, remember no news is good news, and a lack of urgency can be a VERY good thing. One thing to add is that every sub-specialty within neurology functions differently in Vancouver. At the epileptic unit they mail you your appointments, they DO NOT call you...very bizarre, but that is how they like to roll! Do not question the receptionist...she really doesn't like that question!

So at the beginning of February I had my second set of EEG's since my seizure on my wedding night (one sleep deprived and one normal). A couple of days after my results would have been received by my main Neurologist, I got a new letter in the mail from the Epileptic Unit that my appointment had been moved to April 23rd, 2012. I decided I should maybe call them, just to make sure that there wasn't a mistake. What I learned is that I need to see my epileptic neurologist as soon as possible. It shows that my main Neurologist is actively reviewing my file and case and staying on top of it and proceeded in a direction that she felt was the best, when she saw my initial fixed appointment of June 28, 2012. The receptionist at the epileptic unit mentioned how I can help out even more by calling every day between 2-2:30pm to try to get a cancellation the next day. I was trying to figure out who this was helping...pretty sure it is helping her out but let's be honest here, I don't exactly have a full schedule... so to field a common question I get asked of  "how do you really know something is wrong? or When do you know something is wrong?" - you will know. Physicians will make it clear and will make sure that they see you, and if they don't need to see you then sit back and relax.

So on Tuesday, I was advised to try and see my epileptic neurologist at 9am at VGH. I was asked to call at 9am to see if I could make the 9:15 appointment as the 1st patient was unconfirmed new patient. So Jason and I arrived at VGH at 9 and I called only to realized that the phone lines don't open until 10am...I had a brief, "are you serious?" moment, and then just went to the neurology floor, and spoke to the receptionist. She told me to wait and see what happened. The first patient showed, and then the receptionist told me to come back again at 10am and try again...I am really patient, but this was really starting to try my patience. I came back and at this point my Neurologist realized who was and what was going on. When the 10:15 appointment showed up, and the receptionist asked me in front of a room full of people why I "actually" needed to see the neurologist prior to summer, (implying that I was controlling this situation), the other receptionist came out and said my neurologist would see me Friday at 10am. What a runaround! I will say that this is not the normal situation, I have actually never had this happen - so please don't think this is Neurology's normal practice, I think this was just someone having a bad moment! Haha.

Part of the reason that things have been moving in this direction is because I have been having continual headaches, which have been rather uncomfortable. This isn't uncommon with this disease, and I don't really ever like to complain about the symptoms of the disease but it has started to impact getting through the day. The headaches cause dizziness and a sensitivity to light and seem to feel worse if I lie down, which you would think would make it better. I don't want this blog to be too depressing - but rather factual, and these are still the facts. Well I will post more after I see the neurologist on Friday :)

I hope everyone is having a healthy and happy week!

Neuro-Psychology Results

I promised that I would update my blog with my Neuro-psychology results. So to re-cap I saw the Neuro-psychologist, Dr. Bogod, at Vancouver General Hospital on January 10th, 2012 to test my cognitive abilities. I was perceiving that I was having difficulties with memory, and getting things "mumble jumbled" in my brain and having difficulty recalling words or rather drumming up words that should be simple for me to recall. Sometimes I will be standing talking to someone and it could be a simple word like "cup", I won't remember what a cup is called but I know what a cup is. Dr. Bogod explained that with white matter lesion diseases such as Neuro-behcets, MS etc. they affect the wiring up to the frontal lobe, and this is why I have frontal lobe issues.

The other result that they found is that as tasks become more complex and difficult my threshold is quite low for being able to problem solve and work through difficult tasks. I was partially aware of this because when I am in situations that I have to make decisions or listen to a lot of information, I get overwhelmed very easily. I often say things like "I am confused", and at least now that is more easily understood by those around me. The easiest understanding is that my brain is scrambling the information if there is a large amount of information that it is trying to take in.

I use to love hanging out with friends and I use to pride myself on being an amazing team player. I now find hanging out in groups to be increasingly stressful. I find parties difficult because I find it hard to track what someone is saying and to remember, or even maintain a conversation. It takes a lot of effort. If I sit back and relax for even a moment then I have lost the conversation and I can't get back in. As a result, I can come across a bit hyper and overly intense at times - when in actual fact I believe that people are seeing how anxious I am to not lose the conversation.

It was funny, Dr. Bogod said I have quite a bit of anxiety, I almost wanted to laugh, of course I have anxiety. This is anxiety provoking. I think he wants me to be aware of it though, so that I don't let it get the best of me, so I better get my butt to yoga and zen myself :) Love my yoga!!! I am aware that I have anxiety, I always have, I don't really think there is a type A person on this planet that doesn't run a little hot with anxiety at times, but I think it is really positive to have someone check you every once in awhile and remind you to pull out your healthy coping habits and make sure you are living your life in balance, before it gets out of hand.

So what does this mean for me? It means that I compensate very well because I am still very verbal and very articulate. Funny thing, I have poor visual recall....in my opinion a completely useless skill of which I never use :) lol. This all means that if I play to my strengths then I can work with my disease. I compensate by always caring around something to write things down in, a calendar, and my phone. There are also ways when I am speaking that if I lose track of a conversation, that I can use fillers to keep the other person talking while I try to figure out what we are talking about haha! I am good at this trick! So good that it worked at work all the  time! I have tricks to get people to tell me what I am supposed to be doing when they already told me but just in a different way so they don't think I forgot!

Mild Cognitive Impairment affects so many people. People with early dementia, early Alzheimer, MS, brain tumours, and other diseases. It is important to understand that people affected with this are working hard to deal with it and its everyday affects on their life. Even though it doesn't greatly impact their life, to the point that they need daily care, it is still felt and it is still a sense of loss. I would like to remind people again, that a healthy body, may not mean a healthy brain so please remain judgment free of others, for we don't know what people are struggling with.

I feel some sadness right now about the loss of my ability to work as a Paralegal and I feel fear about what is to come, but right now I guess I am going to live in the moment and it is a really beautiful day and I think I am going to get out in that sunshine :)

I am including some links in this blog about Neuro-behcets as well as a video blog of a gentleman from the states who has progressive Neuro-behcets. This is for interest sake, for those who wish to know more about the disease - the more we chat about this disease the more this disease will get out there! Anybody in the medical field out there - please sign up for my blog :)

http://www.neurographics.org/4/2/1/4.shtml
http://emedicine.medscape.com/article/1006358-overview 
http://brain.oxfordjournals.org/content/122/11/2183.ful
http://www.youtube.com/watch?v=S6j98cJg8Js
 

Thank you and have a great day!

Colleen :) 

Neuro-Psychology

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 :)

A little bit of background....

February 1, 2012

So this is my first time blogging so bear with me a little bit as I get use to it.


I really decided to do this because when I became sick a few years ago I found a great deal of information and comfort in other people's blogs about their illnesses. As much as you can rationally tell yourself that you are not the only sick person in the world, sometimes when you are having an exceptionally difficult day it helps to know that someone else out there is fighting along side with you.

I am going to be as detailed as possible so that if there is someone out there like myself, who is falling under the umbrella of a multitude of diseases, then maybe you will have more information for your physicians. Before I go any further though, I have a rare neurological disease called Neuro-Behcets, and as you will see from my recent photo, I look happy, healthy and well, and for the most part I am very happy.

I began not feeling very "well" when I was about 12 years old. At this stage of life it was mostly a sense of uneasiness that I just couldn't shake, along with my mood cycling all over the place. I am well aware that the onset of puberty makes our mood cycle, however this was different and very difficult to explain....all I could really say was that I was cognitively aware that my mood was shifting and I was powerless over it. It often felt like I was standing and watching a scenario unfold, watching myself unravel and I couldn't stop it from happening. My mood got worse and worse as I got older and older. I reached out to anyone and everyone who would listen. It was so painful that at times I contemplated suicide, however I really believed that there had to be a way to get control of how I was feeling. I was very much aware of the impact it was having on my family and my friends. My family attributed my mood to the fact that I was a high achiever, and that there was a lot of conflict in my family home because I was from a large family - so eventually I came to accept that I must have a mental illness that was beyond my control.

I eventually graduated high school at the top of my class and was working full time in the community, and by all encompassing a strong community leader. I got in to a top University, but I was still completely dysfunctional when it came to controlling my mood and my relationships with my family. By age 20, I began forgetting full events, and would be unable to recall what occurred after many of fights with my family. I was eventually diagnosed with Borderline Personality Disorder, and began some treatment under the care of a Psychiatrist. I also had a strong sense of self awareness so I took control of this situation the same way I did everything in my life, and vowed to gain the best skills I could to handle my mood instability and emotional regulation better. However, despite all of my best efforts, by age 22, I had dropped from a B's in University to barely passing and was unable to "put the pieces together". This was my first major cognitive change. I was unbelievably scared. I became a student in the Disability Resource Centre, and had to read all of my exams out loud in order to just pass. It was like what I would read would go in to my brain and would be scrambled, and then what I would interpret would be completely wrong. I had extreme problems holding attention. I became very depressed, but I eventually graduated with my BA in Psychology at age 23.

I remember just not even knowing where to go at 23. I had this label of being BPD, and I really didn't feel as though I was getting better. I also would battle this tremendous fatigue bouts that would be debilitating. I would feel as though the center of the earth was sucking me in. Around this point in my life I also found it very difficult to stay well. During my final exams from University in April of 2005, age 23, I broke out in ulcers in mouth, all over my tongue, and down my throat. I had never experienced pain like that in my life. If you think that ulcers are canker sores, you are mistaken. I had canker sores as a small child and through elementary school. Canker sores, are small to medium sores in your mouth that hurt ALOT, however respond to different treatments, and to rest as they are viral in nature. Ulcers, are large pits that form on the lips, tongue, cheeks, throat, and grow and grow, and can get up to about a cm in width/length and have a white ring and are white and sticky in the pit and they literally do not stop pulsating all day and all night. I have resorted at times to T3's when I have several. They do not respond to any medication as they are not caused by any virus. I can go days with out sleeping and have ended up in Emergency with my Ulcers, where ER doctors (who have never seen them before) have literally thought I am off my rocker nuts. It is only now that they know the nature of my disease that they understand how much pain I truly am in.

By September of 2005, I broke out in the same Ulcers on my genitals...now this is not something I had really told anyone, until I realized how important it was to the disease. So if you are reading this, and you had ulcers on your genitals and some stupid doctor told you it was caused by a yeast infection, and you have never had one before, and you don't have an STI, go see a dermatologist or an Internist. Don't leave it. I could have had my diagnosis at age 23, not 29. This is a clear sign of Behcets, and any physician who knows Behcets, knows the Ulcers. I am being honest and brave and posting this for the world to see, so that hopefully someone else will get an early diagnosis. I hope I am writing this nicely and not meanly :)

So from there... let's see...I went into remission on my own for a bit I think. However I continued to have episodes where I wouldn't remember or know what was going on. My boyfriend at the time, would find me slouched over dazed out, and sometimes curled up in a ball screaming and crying. I was finally referred to a Neurologist and diagnosed with a seizure disorder. This was a wonderful moment for me as I began to better quickly. It was like night and day. I was admitted to the epileptic unit at Vancouver General Hospital for three weeks and evaluated and released with an inconclusive seizure disorder. I know now, that the reason it was an inconclusive seizure disorder is because the seizures were being caused by a disease. At the time, the Neuro team was not aware that I had Neuro-Behcets as very few physicians know of the disease. During my stay in VGH though, they found a brain lesion and sent me to the Multiple Scelorosis Unit, I was 24. This was the scariest day of my life so far. I remember the team of Neurologists standing at the end of my bed telling me that they felt due to my seizures, the fact that I had experience some facial numbness, and had some other weakness on the body exam, and this lesion, that they were very confident that I had MS.

It felt like at that moment that all of my hopes and dreams were being taken away. Everything flashes before you. Where will I be at 30? Will I get married? Will I have kids? Will I have a job? What will happen? Will I die? Some are rational thoughts and some are irrational. All of a sudden your life becomes illness even though it should become about living and health. In the span of 5 months, I had several MRI's, a couple of CT's, a Lumbar Puncture, Evoked Potentials, a genetics test, and several other meetings. Many of which started with "how are you doing?" or "We are sorry". Really? I usually wanted to scream. Eventually I realized that this diagnostic process was going to go on for a long time. They did find another lesion, but I was also a really healthy 25 year old, by that point. I exercised, ate healthy, didn't smoke, and for the most part had a super full life that I really wanted to live. I had a great group of supportive friends and by age 25, I wanted to have fun and leave the medical world behind. So things just slowed down. I was still having fatigue bouts, I would still miss work, I still got ulcers (not on the genitals) but I looked great and I had a job and I partied lots, so all in all - I was fine right?

At age 25 I ended a long term relationship and was living in the heart of downtown Vancouver with one of my best friends and working in the Dating industry. I had a great life. I loved every second of it, and I was definitely not going to let my health stand in the way, despite the fact that it really tried to sometimes. I would take green tea extract to keep me awake at work, my anti-convulsants to keep the seizures under control, and I would miss on average 2-3 days of work per month due to fatigue/sick. I figured I had things under control :) I knew my work didn't really like it that much, I knew they thought I took way too many Dr's appointments, and missed too much work, however I didn't know what else to do. I did my best.

I left work at 26 and decided to go back to school and because I felt so on top of my game, I also decided to go off my anti-convulsants. This was due partially because I had met an amazing man who I saw a future with and I wanted to show him that I could be drug free so that one day we could have children. I had also fallen into the trap of believing that because everything was so inconclusive that there really must not be anything wrong. This is when gradual HELL began...however, maybe this is what ultimately saved my life.

I went off my anti-convulsants in November of 2009 and by February of 2010 I was 30lbs heavier and was experiencing hot flashes to the point that I would have to change my clothes at my practicum. I also was experiencing huge mood fluctuations again, however I really believed that my boyfriend was the one to blame. I didn't clue in at all that maybe it was me, and maybe it was because I was having seizures again. I tried very hard to start losing the weight but it would drop, it just kept trying to go higher. I felt lethargic, and terrible. By August of 2010, when my now husband proposed to me, I was at my heaviest and didn't know what to do. My family doctor finally threw up his hands and looked at my entire history and decided it was time for me to see an Internist. If any of you have seen "medical mysteries" people always see internists because they are the most specialized physicians. My internist, is amazing. He met with me in November 2010, and he determined from my blood work that my female hormones, FSH, LH, Estrogen, Progesterone, had completely dropped off which led him to believe that there was swelling on the adrenals. I had never menstruated normally so this wasn't shocking to me. This also explained why my body thought it was in Menopause. He put me on Metformin, for diabetics, to stop the weight gain, despite the fact I have low blood sugar. It did the trick, however I only remained on it for about a month, due to the risk that it would lower my blood sugar too low.
He also took a very thorough history and said "I believe we are not dealing with MS at all, I believe you have Neuro-behecets disease". He also said that probably within a year we would have our answer. I was 28 years old at this time.

He referred me to Rheumatologist who was also wonderful. She found it very hard to believe that I could have Neuro-Behcets so she wanted to investigate for Lupus. The reason is that Behcets is a vascular disease found primarly in people of Indian descent, not Caucasian descent. Feel free to google the background info on the disease and you will see that caucasian is least affected population. As a result of the lack of information on this disease and the limited population of people with the disease as well as the limited amount of physicians with knowledge of the disease, it is a very rare, and life threatening disease, however with early intervention moratality should be significantly lower. I can tell you from my experience though, not one of my physicians will give me a prognosis because they do not know what my prognosis is. Living one day at a time, just got a whole lot sweeter. :)

I am going to jump to 2011 now. I began 2011 loving every minute of every day. I was flying high on life. I was engaged, and I had was working on my Paralegal Practicum at the government in the field that I had wanted to work in my whole life. I was so happy. I loved planning my wedding, (well some parts were terrible) but most of it was wonderful. I loved being a bride and I had two great friends also getting married so we were living in a bridal magazine. My husband, I think, hated it!!! LOL. However, things just started to get confusing. I would get things muddled, and makes mistakes, and not remember. I figured it was because I had a "bride's brain". It was my first time back at work in a long time, so I also figured it would take me awhile. It just seemed that simple tasks were awfully hard for me to grasp. I seemed to get a lot of "meetings" where I was told that I just didn't seem to get things, and why didn't I just come and ask. The problem was, I didn't understand what I wasn't getting. I tried to remain positive, but as time went on, it just didn't improve. Finally one of the Lawyers, took an interest in me and began mentoring me. She was wonderful. However, she too felt that I just was struggling a lot. Eventually my ongoing doctors appointments, sick days, and performance were too much for me to advance and a week before my wedding we parted ways, much to my disappointment. I felt very defeated because I just didn't know how I was ever going to manage work and my illness. I thought the government would be the most understand and in actual fact, there I felt like I stood out like a sore thumb. I don't want to be different, I just want to be able to manage it, and be able to do both.

On September 24, 2011, I woke up to beautiful sunshine, and warmth and the knowledge that I was going to marry the most amazing man in the world. I was so excited!!! The day was perfect, from the beginning to the end. My bridesmaids were beautiful, and my photography/video team was out of this world. I just couldn't have asked for more. I had so much fun and I don't think I stopped smiling. I really felt that I my life was perfect. I have been so happy for so long, I didn't know what I did to deserve another perfect day. I was feeling a bit off though, dizzy and struggling to hold attention. I figured I was just tired. I really had an urge to lie down, which obviously you can't do lol. At the end of the reception during dancing, I suffered a massive seizure. Lots of  people think that I was just "heavily intoxicated" because I vomitted alot, however I will let those individuals think what they want to think. I was unconscious, and vomitting and was taken by ambulance to emergency where I came to about 5 hours later. I felt very confused and anxious the entire next day. I followed up with my Rheumatologist on September 26, where I had another seizure and was taken to Emergency at St. Paul's Hospital. My Neurologist was paged and the neuro team began trying to control the seizures. They ran an EEG and found that my seizures "were a mess" and "very bad". It was at that time that they immediately started anti-convulsants again, and then ran an MRI, because I was scheduled to leave for my honeymoon on the 28th. On September 27th, 2011, My Neurologist came in with her senior resident and told me that there was a new lesion patch and swelling down a vein line, as well as hazing over the brain. This was a conclusive result of Neuro-Behcets. I have to give my neurologist immense respect for the way she told me the news in St. Pauls Emergency. She has been my neurologist for several years and knows that I have been through the ringer and back with diagnosis and she showed me so much compassion. She was caring, kind, and let me ask questions, and she didn't leave until I was ready for her to go. Plus, despite what she really wanted, she let me go on my honeymoon!!!! with a bottle of Ativan to control my seizures with all of my other meds, and the condition that I would fly home immediately if I had a seizure.

So what does this mean....it means that since September I have been trying to come out of a fog. I was pretty cognitively impaired after the big seizure. I had a hard time getting words out, and remembering even the smallest things. I take Imuran 200/day, Topomas 400/day, Folic Acid 5mg/ Asprin daily 80mg. I have had one bought of 3 days of IV steroids which improved my mental clarity and I am looking forward to the second. I think I am doing better! I look forward to sharing my journey with you!!!

I hope this will help some physicians as well. Please feel free to ask me any questions. I am very open and honest. There were so many times, when I was up late that I wished I could have asked someone questions.

Have a great day!



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