Wednesday, 9 May 2012

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:

Well that is all!

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


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