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 :)