Better late than never!

I've been getting some pretty regular trouble for not blogging and keeping you all updated. So here goes. I am recovering well, all has healed and I have still noticed changes. I am still migraine free, I can still tolerate heat, my right hand still tingles like I have just come in from the cold. I have not noticed any difference in my balance, coordination or endurance. I am still hopeful that if I work on the physical strength then these things will improve. Over all I feel as though having the procedure done was 100% worth it. At the very least I got to go on a wonderful girls trip with my Mom and that is no small thing. I renewed my hope and I have improved my daily quality of life even if just the lack of headaches. At the most I took a step that has changed my future path. If CCSVI does turn out to be an answer in the fight against MS I will know that I took the plunge early and prevented further damage.
I thank you all again for following me on this blog through my adventure.

XO

Jessica

The little things

Blog disclaimer....todays blog is being typed from my new ipad so it will contain even more typos than normal ;)

Each and every day when I have a shower I turn on the fan in the bathroom that is on a timer. It runs for 30 minutes. Previously I could almost always count on the fact that if I turned on the fan right before I stepped into the shower I could know that by the time the fan turned off I would have my shower done, hair dried and makeup on. The speed of this is not due to my overwhelming efficiency but rather to my heat intolerance. Tonight something strange occured.

I set the timer then jumped in the shower and washed my hair. Then I washed myself, shaved my legs and scrubbed my feet...all with the shower on HOT. Then I stood there with the hot water streaming over me thinking about how wonderful a hot shower was. Long story short I spent over 45 minutes in the shower tonight and loved enery minute of it. Heat was no problem, no balance issues, no fatigue, no dizziness or blurred vision.

So I guess we can now add heat tolerance to the list of things that my "procedure" has changed in my life placebo or not!

Home safe and sound

I arrived home yesterday evening and have had 2 little sweetie pies attached to me ever since. It is wonderful to be back in my own bed and settling into the couch to take it easy for a few more days. The plane ride home went smoothly, I was sore when I arrived home which is no big surprise considering how much pressure was put on my veins.

All is well....and to answer all the questions on whether or not it worked I don't know. Dr Vogl was very firm  that this is NOT a cure for MS but an experimental procedure that is being used to treat the symptoms of MS. He hopes that looking forward it may help with slowing or halting the progression but as of now we know nothing.

What I do know is that just as many others have claimed after having the procedure done my "fuzziness" is gone and I am no longer popping Advil like candy for my constant headaches. So this is a good step in the right direction and I will continue to hope to see more improvements!


Jessica

The Day After

After almost 8 hours in the hospital last night I made it home with just enough energy to eat a quick dinner and then collapse into bed. I sleep for a solid 12 hours and am now awake just enough for sitting on the couch curled up in a blanket drinking coffee and playing on the computer. Nothing different to report today, I have a major headache and the lovely bandage wrapped around my hips to prevent bleeding from the site they went in is ever so comfy ;)  but now for the part you are all wondering about, the actual "procedure"

As all of you know I do not always stay calm cool and collected and this proved to be one of those times. The day went something like this.

1pm arrive at hospital wait in hallway waiting room for nearly 4 hours

445pm get called back to "cabin" aka room done long white hallway to wait in a little room with doors on either side, one door from hallway to cabin, the other from Cabin to OR

(here time gets fuzzy)

My Mom and I waited for about half an hour in the Cabin then they called me into the OR. I was laid on the bed and then watched as the room was set up for my procedure. The placed an IV with just saline in my left arm, inserted the whatchmathingy for the catheter in my upper right hip and then in walked Professor Vogl.

They strapped on his plastic mask, asked me a few medical questions and then he said "So lets see how your veins behave" In he went and all was good, I could not feel a thing until he releases the contrast dye into my left IJV...at the exact same moment I made the mistake of looking at the screens that displayed what was happening. BIG MISTAKE  a panic attack...a true one...with sweating racing heart, nearly vomiting and hyper-ventilating began. Professor Vogl asked what was wrong, I told him I felt sick and panicky and his response was "No panic allowed you are fine" A very kind nurse, or another Dr ( I have ano idea they all spoke to one another in German only ;)) came over put a cloth on my head and rubbed my hair and started explaining what they were doing in English. Knowing what was happening calmed me down almost instantly. I felt them insert the dye into my right IJV, it feels much like when you have water shot into your ears to clean out excess wax (gross I know) then explained that they were going back in to balloon the vein. It too him a few tries and he remarked to the others in the room (there were 6 people) that there was lots of pressure in the vein and it may have been their best example yet. He pulled everything out and told me I had ballooned, I was done and had to remain lying doen for an hour to prevent bleeding from the artery in the leg. After an hour I was sent for a CAT scan, a BREEZE after MRI's and then told I could get dressed and go wait in the waiting room again for the Professor. We waiting about 15 minutes before we went to talk to him to be told all was good and to please fill out the following forms, Immediately after, 1 week, 4 weeks and 3 months after the procedure so that they can compile data for the "experiment"We then went back to the hotel

So here I am the morning after, with an open IJV rather than a 70% closed one feeling tired and with a headache. I will take it easy for today and check-in aging tomorrow

Thank you all again

Jess xoxox

Tomorrows the big day

I went to the University Hospital today in Frankfurt to meet the wonderful Dr. Thomas Vogl. After a night with no sleep and plenty of worry I arrives at the hospital for yet another MRI and more Contrast dye. 3 hours later I sat across from one of the most honest and intelligent people I have even met. Within minutes my mind was at ease and I knew that I was doing the right thing. My surgery tomorrow has a 50/50 chance of working for me, a 50/50 chance of making symptoms such as my fatigue, numbness and visual disturbances go away. It has a completely unknown chance of preventing the progession of my MS. As most of you know I am a planner, an organizer and a calculated risk taker. Tomorrow has no guarentees, no promises and no know future effect. The Jessica from 8 months ago would never have walked into this situation because it requires faith and belief. I have always argued that just believing in something is not enough, that there has to be proof and facts to back it up. Yet tomorrow I walk in having faith that I will be ok and believing that the proof that the procedure works will come. So if nothing else comes from my surgery then I have still grown and allowed myself to trust my gut that little bit more

A drive-by

  The 3 days in Heidelburg were amazing. The town was beautiful, stunning architecture, friendly people and great accommodations. We wondered the cobblestone streets until we couldn't walk any further and stopped for breaks at various cafes alternating between beer and coffee. I would LOVE to go back again one day with Jeff and the girls under different circumstances. We had a final wander this morning and then lunch at the hotel before we took a car back to Frankfurt.
 
  I knew my nerves were kicking in this AM when I woke up at 5 and could not coax myself back to sleep but I did not realize jut how anxious I was becoming until after we arrived in Frankfurt. In the car ride here I was calm and sleepy, taking in the scenery and thinking about how it was really not that different from driving through BC or Alberta. When we arrived on the outskirts of Frankfurt I could not help but notice a similarity to Calgary's streets and building. All seemed well until we drove past the Gothe University Hospital.  All at once I was forced to remember that we are not just her for coffee, beer and sightseeing. I was shaken and rattled, ready to pack my bags and go home. A little rest, some fantastic coffee and beer later I am again feeling more confident and ready for tomorrow.

  I have my initial meeting with the Dr tomorrow afternoon, he will run some tests including another MRI to make sure that I am indeed a candidate and if all is well I will be scheduled for the surgery on Friday. For now I am getting ready to go to bed and then taking it a day at a time hoping that tommorow goes smoothly.

Thank you all again for your support


Jessica

A quick check-in

I have made it to Germany safe and sound. My Mom and I are in Heidelburg and have spent our time so far pretending that we are here just to see the sights and relax. I spoke with a fellow Canadian last night who was also treated by Dr Vogl, the same surgeon I will be seeing. She sang his praises and that managed to put my nerves to ease.

This is a quick update...I am using the free hotel internet in the business centre and there are others waiting to get online.

Thank you all for your contued support and I will post again soon

Jess

A different kind of trip

   Yesterday I was driving around running errands getting ready for my trip and listening to my Ipod...so doing a thing I rarely do I am stealing some song lyrics and applying them to myself

"And I can’t fall asleep
Without a little help
It takes awhile to settle down
My ship of hopes"

   For the past week I have been unable to sleep, unable to concentrate or more embarrassing (to a self-admitted non emotion sharing person) unable to have a moment to myself without bursting into tears. No matter what way I look at this trip I find myself running in circles. "Its just a vacation" I try to tell myself but I know that's a lie. "12 days without the girls will be a good break" another lie and since this is the longest I will ever have gone without them I have trouble imagining it. "If the surgery doesn't work nothing ventured nothing gained" The biggest lie of all. I "came out" when I published my previous post as to how much this surgery and the possible that go with it changed my outlook of hope and now, the day I leave I am stuck facing myself and the reality of what it means.

  Usually when I go away on vacation I am looking back to coming home a relaxed and refreshed version of myself  and with this trip I am taking that desire to a new level. I feel like a kid at Christmas waiting to see the shiny package under the tree, wrapped in the most beautiful paper with a large bow and containing the my one must have gift. I cannot help it, when I have a moment to think about the possibility of the surgery working I get giddy and hopeful and lie awake playing over what it would mean.

 I am being realistic though, I do know the procedure might not work so as prepare myself for the trip I am noting other positive aspects. Most importantly the support I have received from all of my family and friends I am a very lucky lady surrounded by very amazing people and I because of this I am able to hold out a-lot of hope for my wonderful future even if it does not work. I am headed to Germany, it has been over a decade since I have been to Europe and I am looking forward to being a tourist. I am about to spend 9.5 hours on a plane. Most people would dread this part but the Mommy in me is secretly looking forward to the solitude that my little "pod" will bring me. No talking just reading and writing and maybe watching a movie...eating hot food and drinking a nice glass of wine it's almost a visit to the spa ;)

  So as I promised I will continue to blog on my trip and I just wanted to thank you all for your amazing kind words and actions and your overwhelming support and encouragement.

Thanks

Love Jessica

An image of hope

The point of starting this blog was to write about my motivations for photography, about the emotions and experiences that I encounter along the way. This entry, however, is about an image taken of me. Almost 8 months ago I sat down with my husband to watch a documentary on W5 about something called the "liberation procedure." Unexpected to me I wept as I listened to the story unfold of an Italian Doctor who was turning the MS community on its head and questioning if MS could be a vascular rather than a neurological disease, and a disease that could be treated or cured at that. In the span on a 1 hour television program I realized that I had spent 7 years without hope of a future without MS. I never outwardly admitted this, I raised funds for the MS society, I told family and friends how hopeful I was but internally I had given up the day I was diagnosed. 7 months later I traveled to BC to have the tests done to see if I do indeed have this controversial condition labeled "CCSVI" I do not have all of the results yet all I know is that I have "indirect indications" of the disease but am waiting on further results. Even if they are positive the surgery is not yet offered in Canada so I am on a waiting list to fly to Poland in the Spring of 2011. At this point though the images of my veins and arteries, regardless of whether or not they lead to my "Liberation" represent so much more to me. In the 7 months since I was given that glimmer of hope I have taken charge of my life in a new way. I have returned to work. I am looking forward with new drive and a strong determination. This gift of hope has allowed me to FEEL the way I spoke to others about the disease and my future with it. I walked with a cane for the first time last week...a year ago that would have devastated me, it would have indicated the "beginning of the end." Instead I was able to look at it as all it was...something to help me.  So whether  or not my veins are clogged or narrowed or Dr Zamboni has given me the gift of a wider view of my future and for that reason the image posted with this blog entry today of my MRV will earn a place on the wall of my home.

A wintersleep

I bit the bullet in the fall and registered for a photography class at the Art College here in town. I was sooooooo excited to be a student again and to learn more about my camera. Alas the course was canceled due to "lack of registration" so my Saturday morning escapes were no more. Yesterday when I put the girls down for their naps I decided enough is enough! I do not need to wait to "escape" to go take photos, there are photo worthy things all around me. So I bundled myself up and trekked off into the yard. I took some shots of the beautiful frost that we have and I am happy with how some of them turned out. Most importantly I got a breath of fresh air right in my own backyard and by the time the girls woke up from their naps I was refreshed and ready to play.

After bedtime I loaded the files onto the computer and started to play in photoshop As many of you know my husband knows photoshop inside and out so you would think that I would just ask him for help....but no. I learn by doing so last night I did a-lot to my photos some good and some bad but I did manage to learn some new photoshop skills!!!