Lots to sort through in my mind today. Picked up my daily devotional and prayed that somehow God would speak to me through the pages for today's devotional. The following is for today, February 18:

February 18

Cast your burden on the Lord, and He shall sustain you. Ps. 55.22

   Almighty God, I have great concerns on my heart today, yet I know You are a great Lord who can help me with those concerns. My work, unfinished projects, and unresolved perplexities weigh heavily on me. Uncertainty about the future and my inability to solve everything reminds me of my human limitations. And worries about loved ones and friends occupy my thoughts.

   Help me to cast my burdens upon You, and stop trying to manage my burdens in my own strength. In this quiet moment of prayer I deliberately commit each one of my burdens, large or small, into Your gracious care. Help me not to snatch them back. And give me an extra measure of Your wisdom, insight, and discernment as I tackle the challenges of this day.

   Make this a productive day in which I live with confidence that You will guide my thinking, unravel my difficulties, and empower my decision. I am ready for this day, Lord, and I intend to live it with freedom and joy.
So, I woke up this morning and went over to the hospital to pick up my test results. As it turns out, I am pregnant after all. Floods of tears won't seem to stop. I am so confused, frustrated, sad, disheartened, and so many other emotions that I cannot seem to even put into words. I struggle so much with what God is doing. I felt so strongly that He had led me to Poland and that all things were falling into place. Now it just makes me confused, not knowing what to believe, is it His voice or not? How do I ever know if I'm in His will?

This changes so much for our family -- changes which I'm not really sure I wanted. I've always wondered how people can be sad when they find out they are pregnant, and now I know (and won't be so quick to judge!). I pray that God helps me to get to the place where I can say "God you are in control and everything will be okay". Obviously I am mourning my lack of control, and the dreams which I had fully envisioned for myself. I am completely at a loss right now.
This cannot be happening ...

It's almost time to pay the bill for my surgery, but oddly enough I'm a day late for my period. Nothing really stressful though because I was late last month too. Note to self to pick up a pregnancy test just to rule it out (even though I'm pretty sure it won't be positive).

Back home after grocery shopping, I take the test, stick it on the counter and do some other things, come back 5 minutes later and glance at it as I walk past, and nearly faint. Were those TWO lines I see in the strip window? That's impossible. Speed through the next hour of breathing quickly, lots of tears and general freaking out. I went to the doctor to have a test there to confirm, and theirs says the same. So, now I was sent to the hospital lab for blood work .. they will be able to tell me for sure, but it will take a few hours.

Life as I knew it was crumbling before me. My hopes for my future without MS just fell to the floor. I should know by 5pm, they say. I keep calling all afternoon but the hospital computers are down. ARGH! So, now I have to wait until tomorrow morning before I can get the results. Talk about torture.

I just talked with the clinic in Poland and they confirm that you cannot have the procedure done if you are pregnant. :(
Haven't slept well in the past 4 days, so went to bed at 8:30 last night and stayed in bed until 7am. Woke up a few times but feel like I've caught up for what was lost. Have NO idea what is keeping me from sleeping deeply but it is very exhausting.

I have so much to do to get ready for my trip, but am so greatly lacking motivation. I certainly hope that I can get it together within the next week.

Feeling very blessed at the outpouring of support from friends and family for this trip! Part of me thinks "I'm not worthy for them to send me their money". I've never been a good receiver .. well.. I was a good receiver from my parents, because I grew up with parents who were so very giving. It's easy to receive from them because it just feels natural. But from people who have no blood connection to you? Amazing. My first initial thought of friends starting fundraisers and aiming to get funds from 100 people, I thought "I don't even know 100 people!" Tears come to my eyes when I get a letter in the mail from people sending donations -- I feel completely humbled, and loved. I've always battled with insecurity and so all the response and support has been so completely overwhelming to me, in a good way.

This is all countered with daily sorrow for my brother, who is battling with Parkinsons Disease. His daily walk is so much harder than mine. I pray and cry for him daily, praying that the Lord will hear my cries and heal his body. It breaks my heart that there is no help for him. There is potential treatment that he is looking into and I pray .. oh I pray that this is an answer for him. I need him so greatly in my life, and I know that I speak for many in saying he is a vital part of their lives. He is the one that sent me that verse on the top of this page. He is my hero.
Woke up with a killer headache. Not sure where that came from .. .probably a lack of chocolate! :) Nevertheless, when that happens, I tend to find everything going slowly, or perhaps more like a standstill.

I decided to cancel the plans I had for the morning and stay home to do more research for Poland and ended up booking our car rental, and made a few phone calls to Poland to get some more details on certain parts of my stay. I didn't like still being in my pj's at 1pm ... SO glad that no one decided to pop by for a quick visit!

Was feeling pretty tired and not up to home group tonight (at our house) but so glad that I pushed through the fogginess and really enjoyed the time together with the group. Of course, the melted chocolate on the strawberries helped somewhat!!! It was an encouraging night, the video we watched (Fruitcake and Ice Cream) made an impact on how I normally interact with people that I meet in my daily routine outside the house. It showed me that I need to see beyond their exterior -- and try to show more of God's love to them instead of me being lazy and just trying to rush through my day. Was very blessed to have the home group pray for me and my family for this upcoming trip. What a blessing it is to have assurance that the Lord is on my side -- He has me in His hands and I don't need to worry about all the details of this trip. He has blessed us so much already with even getting this appointment so soon -- and with all the generosity of family and friends. To me, it is very clear that this is part of His will for our family.

Well.. I'm trying to work a bit towards changing my sleep schedule to get closer to Poland time (9 hours ahead) so I better get to bed. One thing that made me grin just now, I recalled today Julianna (who is learning to potty train right now) was very proud of herself for going on her own and said to me TADA!! I did a GREAT job! So cute. Man I can't believe how blessed I am to have 4 wonderful children. Even through all the sibling issues and accidental pee on the floor (not mine) .. I wouldn't want to be anywhere else.
So, today I finally received a confirmation email from the clinic in Poland which also laid out the cost of the surgery, which will be around $7,000 CAD. It's nice to have that confirmed.

I cannot seem to shake the feeling when I wake up in the morning that I haven't even yet slept .. and believe me, I'm getting decent sleep! It sucks to feel like you are constantly running on zero energy, especially when your daily routine demands so much more. I think if I can just get rid of these heavy cement blocks on my eyelids I'll be much better off.

I've also felt really off today.. my entire body is throbbing, but I am resisting doing any Tylenol etc. as I find that if I mask things too much, I tend to overdo things and feel worse in the end. With this pain and lack of energy I just can't seem to get anything done.
Saw a surgeon today for the lump in my neck. He doesn't like some aspects of it (but wasn't willing to let me know exactly what he thought .. just told me not to worry until further tests came back).

I had to get some blood tests done today before having a CT scan. No idea when the date for the CT scan will be at this point as the hospital has to wait for the results of the blood work before they set the scan date.
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.