Time for another update, if anything, for me to keep track of little changes here and there. 
  • My voice is continually raspy and crackles all the time. Sometimes I lose the ability to talk loud enough and all that comes out is a whisper.   Frankly, it's a very disheartening symptom, but I can cope with it as long as I don't think about how it could potentially worsen as time progresses. I think it's been like this for two to three weeks now.
  • The zapping pain my feet has been a little less severe the past few days, but along with that the bladder torment (feeling like I always have to go, even though I don't) has greatly increased, and I've opted to use my meds for that the past 3 nights.
  • My brain fog is a lot worse this week.  Sometimes I just can't seem to get clear thoughts out into words, and other times what I do say comes out backwards.   
  • My fatigue is the worst it's been for a long time.  There are days when I'm in bed all day, and others which I can seem to drag myself around doing my daily tasks but simple things like walking up and down the stairs is tiring.  I don't think I could walk around the block without exhausting myself.
I have put my name down on a wait list to have the procedure done again, this time in the US.  It would have been nice to have Canada run with it at this point, but I cannot see that happening for quite some time -- and even at that, I'd like to go somewhere that has a bit of experience.  Yet, where will the $ come from to walk this road again?  I really have no clue.  All I know is that I have to at least try -- one more time.

My emotional journey has almost been as difficult as my physical one.  This past week was the week when my baby would have been due.  That definitely was a hard week for me.  How I longed to hold this little one, to show Julianna her little sibling -- she would have made an amazing big sister!  How does one fill that hole? It feels like a part of our family is missing.  I struggle with why God would allow that unexplained pregnancy, and then allow it to be taken from me.  I feel the pain every time I see someone pregnant or that new little baby.  I keep asking God how long it will take for that to heal. 

Along with those emotions comes the mourning of losing the abilities that I cherish -- being able to physically play with my kids, going for walks (or jogs!) around the lake, or even wondering if I'll be able to shovel the snow off the driveway this winter.  It's as though I know what I should do in giving it all over to God, but yet, another part of me just doesn't "get it".   Maybe it's the brain fog preventing me from retraining my thought processes... or something else.   I'm trying to do what I can to focus on the positive, and take one step at a time.   I had been finding lately that it was difficult, at times, to watch people's lives on facebook -- lives full of activities and other things which I did not have.   As selfish as it sounds, it was difficult for me to be glad for others who seem to have everything going for them.  When I say that, it sounds so juvenile -- yet it's what I struggle with.  I struggle with watching people jog by my house .. struggle with wanting to yell out to them "do you REALLY know how fortunate you are.. do you really appreciate what you have?".   I then realized that I need to take some time off from the facebook world.. time to focus more on what I did  have, rather than what I didn't .. and facebook was definitely distracting me towards all that I didn't have.  So, as technologically driven as I am, I deactivated my account.  It felt VERY odd in doing that.. but as I did, it also felt freeing.  I can't really explain it.  A load lifted perhaps.   In this past week, I have used the previously allotted FB time to focus on trying to keep the house more in order and most importantly, more time with the kids (even if that "more time" is just laying on the couch reading to them). 

I have always been a very static person emotionally, so this constant state of always feeling like I'm hanging onto the end of a rope, with my hands slipping, is a very challenging place for me to be.  It has made me live moment to moment, as looking to tomorrow is just too overwhelming.   All this to say, that there are people in my life who bless me greatly, their support holding me up daily.   My brother, my rock -- without you, this road would be so much more difficult.  God knew that I needed you to walk this road with me, although I continually pray that He will heal you first -- after all, you had Travel Share (inside joke).  My husband has been so supportive and providing me with hugs.  Friends and family pray for me and that has been such an encouragement in knowing I'm not alone.

I am realizing that I have so many things that I need to work through, spiritually.   I know I have a growing fear of "what's around the corner".  So many things have happened to our family, from house fires, to lung surgeries to e.coli and M.S. -- it's a battle for me to fight the fear of "what's next".  God give me the strength to trust you, and fight against all those fears which want to envelop me.   Help me to see ways in which I can bless others, and focus less on my pain and loss.   Oh Lord, speak to me -- let me hear your voice, guide me, show me what you want me to do - I don't want to feel like I'm walking this road alone.

... and yet another week goes by.  Did I notice?  Not really.  I spent whatever time I can these days laying down as I just don't have the energy to do much.  My body is always in pain and it wakes me up at night.  Today, Thanksgiving Day, I spent the day in bed sleeping off and on until around 1pm.  I had barely enough energy to turn from side to side.  It's times like this that make me so sad, to see that I'm missing out on family outings or just plain ole playing with  my kids.  I would have loved to go out for a Fall hike today with the fam. 

I have old MS symptoms showing up again -- my hands are starting to become cold like ice again, and I am experiencing some temporary (off and on) weakness in my right leg.

On the other hand, there is so much to be thankful for.  A family that I did not know personally, but rather heard about through friends, recently lost their 5 year old daughter to a brain tumor after fighting their battle for two long years.   I cannot imagine the heartache that this family is dealing with.  It reminds me of the e.coli situation we dealt with with our boys, and delivering baby Julianna while they were hospitalized -- and not knowing if they would end up in heaven, or end up recovering.  What a stressful time that was.  So it brings all that back to memory and makes me very thankful that I'm in a season where my children are healthy.

This time is bittersweet I suppose -- thankfulness of my family's health yet sadness that I cannot partake in living life with them.  One minute at a time.
Just about a week since last post, and things have only gotten worse.  If I could, I'd spend most of my time in bed, but can't due to family obligations. On one hand, however, it's better that way because it keeps my mind off of feeling so horrible. 

There have been some new symptoms this past month, some which I've never had before, which include:
  1. Nausea after I eat any food
  2. My voice is starting to crackle when I talk
  3. Consistently not sleeping well at night
This down turn is so disheartening.  I don't have the energy to go out .. let alone even go out for a simple walk.   I won't go into how I'm feeling emotionally, cuz it's not great.  Just wanted to post, mainly for my record, the changes that seem to be occurring rapidly.