Recently it was recommended to me that I start keeping a journal documenting my ups and downs daily on this MS road that I've been traveling on. Believe me.. I'd rather be traveling on the freeway, but it seems that I've been diverted to the slow-lane of this unknown backroad that seems to have many potholes and sharp curves.

What's that? Write my thoughts down? That is something I NEVER want to do. Why would I want to keep a written copy of something that may incriminate me later? Sounds dangerous to me! I have read my diaries written as a young girl and cringe at the thought of those ever being read by anyone! Nonetheless, I do see some merit to charting my progress (or decline, as is now the case) so that at least I can look back and see how things have progressed.

I know that some people may end up reading this, so I should probably start from the beginning and share the history of my body's crazy roller coaster ride. I'll do this in point form as really, the past is not something I really like to focus on.
  • 1989 - First lung collapse, followed by MANY other collapses and various painful procedures to fix the issue
  • 1992 - First child was born (boy)
  • 1993 - 1998 Very sick with diagnosed fibromyalgia / chronic fatigue / irritable bowel syndrome / restless legs syndrome / heart valve issues and probably many other things I've decided to block out of my memory. It was a very rough period of exhaustion and general very poor well-being.
  • 1998 - Another serious lung collapse and subsequent major surgery (thoracotomy) followed my months of recovery
  • 1999 - Drastically changed diet and started to feel MUCH better (cut out wheat, dairy and sugar)
  • 2002 - Felt so good that we decided to have another child (boy) which shocked everyone we knew!
  • 2004 - Felt SOOOO great had another child (boy)!
  • 2002-2004 - can't remember when, but had some odd visual disturbances and some numbness in my right foot, but nothing serious. Had an MRI but the "cysts" on the brain were considered tiny.
  • 2007 - Still feeling amazing, had ANOTHER child (yeah a girl!)
  • 2008 - Started to have some other issues pop up (fun bladder issues, numbness increasing up my right side, more visual issues, memory fog becoming a part of my everyday life, and other weird things here and there)
  • 2009 - Generally not too bad, just learning to cope with the new characteristics my body had decided to take on.
  • May 2009 - Numbness quickly traveled up my right leg, to my right arm and continue down my left side, all within 24 hours. Went on a wait-list to see a neurologist.
  • June 2009 - Officially diagnosed with MS (through MRIs and spinal tap) .. definitely a HUGE shock
  • July 2009 - First major attack on my body - took over a month to recover from
  • Oct 2009 - Second major attack - another month of recovery
  • Oct - Dec 2009 - feeling okay, but somewhat tired, some days the exhaustion is just too much to even try to communicate with people
  • Dec. 2009 - Had MRV done in Vancouver to test for vein restrictions
  • Dec. 2009 - Was interviewed by CBC (French) on the CCSVI issue, that was a fun experience for me and the kids!
  • Jan. /10 - Had a follow-up scan done in Vancouver (MRV - Magnetic Resonance Venogram)
  • Jan. /10 - Had a bout of food poisoning and after that, I just didn't seem to come out of the pit of exhaustion. Daily I wake up after a GOOD night's sleep, feeling like I haven't even slept yet. By evening I can barely find the words to keep up normal conversation and feel like my eyelids have cement blocks attached to them.
  • Feb. 1 /10 - Getting checked for a lump on my neck. To date just don't know what it is yet, what else can go wrong?
  • Feb 2/ 10 - Have a date scheduled for Poland to get surgery by a Dr. Simka for CCSVI (see here for more information on what CCSVI is http://csvi-ms.net/en/content/introduction-venous-multiple-sclerosis ) . I cannot express how blessed I feel to have this appointment!
The bottom line is .. if I'm having babies, I feel great! (hmmm... maybe I should be the next 19 kids and counting?). Now that I'm no longer pregnant, it seems that my symptoms have kicked into full gear.

When I saw Dr. Zamboni's story on TV in December, my heart jumped. Could this be what I've hoped for? A future for me and one where I can be the mom that I want to be (active and AWAKE)!!?

This is going to be a place where I can keep my notes on my daily struggles, and is really meant to just be a log for myself, so it won't be anything entertaining! I'm not sure if anyone will read this (my inner introvert is thinking "I hope not!") .. but at least it will help me to see the progress of before and after surgery, as well as to possibly keep others up to date on how I am doing.