Do you ever have a day where you are weak and tired .. your defenses are down, and you give in to temptation WAY too easily?  It might be that brownie covered in ice cream and hot fudge, or perhaps something else that gives comfort.  For me, it's something complete different (although now that I mention the brownie, I'm definitely craving one!). 

Last night our local weather "experts" had forecast a bit of snow. I've learned to NEVER get to excited about that announcement. They are usually wrong.  Surprisingly, we awoke to a few cm's of snow and the rain that was supposed to settle in by 7am didn't materialize.   As soon as I wake up on any given day, my body announces to me how much it likes me at that moment.  Today, it wasn't very favorable and I quickly deduced that my body was about a 0.5 out of 10.  I would have labeled it as zero, but since I was actually able to move without complete exhaustion, I had to at least be optimistic for my day.

It is my husband's birthday today.  At least I can make him coffee this morning!  So, that is what I did.  I made myself get out of bed and find my way down to the kitchen at 7am.  However, because of the rarity of snow, my kids wanted to go out and play.  This is no easy feat!  Getting kids dressed for outside winter play becomes an assembly line .. a very slow one at that!  Unfortunately, hubby didn't get his coffee in bed as I took too long to make it.  At that point, I was pretty ticked off at my body's hatred for me and it was my time to give in to my version of the 'hot fudge ice cream brownie' -- "shoveling snow".   For those of you who don't know me well .. shoveling snow is one of my favorite things in life to do.  It is freeing, peaceful and makes me feel alive!  Even though I felt so crappy this morning and could barely walk around, I was mad.   Mad that I'm stuck in this body .. mad that everyone else seems to be able to experience life and I'm stuck having to do nothing other than exist.  So, enough was enough!  Who cares what the consequences would be.  I was going to shovel that driveway!

Well, the kids decided to follow me out there and help, so there were 5 of us shoveling (and bumping into each other).  After we quickly finished our driveway, my 8 year old said that we should help some elderly neighbors by shoveling their driveway. Sounds good to me!  Off we went and cleaned theirs.  This was fun!  Once back home the kids continued to play in the backyard while I decided to "clean up" a bit of our driveway shoveling job.  I thought I would clear a bit in front of our driveway on the road, just to make it a bit more complete.  Before I realized it.. I had done a major strip of the roadway.   My neighbors must think I have some serious issues.  ha ha

I must say, my right leg is not in favor of what I did today.  I feel like I'm lifting a 100 lb. weight when I walk.  I knew I would pay for what I've done.  Do I really care? No.  Not at all. I'm so tired of being the invalid, the needy one, the weakling.   I needed to feel human - normal - useful - valid.    I thoroughly enjoyed myself.  I wish that feeling could last forever.   Unfortunately in this climate, it may only be possible once a year.   Today was my day.

Physically difficult day.  Probably a 1/10.  Had some visitors today, which kept me focused on other things.  Today, I find it hard to be strong.

Here is a song which reflects my heart at this moment:

Red - Not Alone


Slowly fading away
You're lost and so afraid
Where is the hope In a world so cold?
Looking for a distant light
Someone who can save a life
Living in fear that no one will hear your cries

(Come and save me now)
I am with you
I will carry you through it all
I won't leave you
I will catch you
When you feel like letting go
'Cause you're not
You're not alone

Your heart is full of broken dreams
Just a fading memory
And everything's gone
But the pain carries on
Lost in the rain again
When will it ever end?
It's Hard to believe
It seems so out of reach

But I
(I am here)
I am with you
I will carry you through it all
I won't leave you
I will catch you

When you feel like letting go
'Cause you're not
You're not alone

And I will be your hope
When you feel like it's over
And i will pick you up
When your whole world shatters
When you're finally in my arms
Look up and see love as a face

I am with you
I will carry you through it all
I won't leave you
I will catch you
When you feel like letting go
'Cause you're not
You're not alone

And I will be your hope
You're not alone
And I will pick you up
And i will be your hope

Slowly fading away
Lost and so afraid
Where is the hope in a world so cold?

Okay, I must admit I'm terrible at self-control.  In any given "battle" I'm more apt to give in to my wants than to stick out for what I know is right.  But really?  I can't even stay off coffee for a week?  I had thought it might be a good idea to try to cut out coffee for a bit to see if I feel any better.   I continue to fail.  It's not as though I am "addicted" to the caffeine, because I drink decaf.  It's the ritual of it.   There is something comforting in the morning cup of coffee -- the start to the day.  That smell that says "okay, it's time to slowly open your eyes, one at a time".  Yes, the kids do help with that by jumping on you on the bed, but the coffee is a little more gentle at prompting you to start your day.

This also has me thinking.  It appears that's it's not so much the actual coffee itself that draws me, but rather the sense of comfort that it provides.    Perhaps comfort has become an idol in my life?  I hadn't thought of that before.   In my quest for better health, so much has been removed from my daily routine -- foods I love, exercise, etc.  It leaves one with a sense of loss when you consider all that you "cannot" have.  In one way, the morning coffee replaces a little bit of that loss with an "ahhhhh, finally something just for me".  

I guess it's time to figure out whether this is something that is an issue for me and my battle with self-control, or whether I will allow myself the pleasure.   Maybe I can find a median wherein I can partake of both worlds -- one where I can enjoy some little pleasures yet at the same time continue to strive to die to self.  

Well, I've now realized that this round of prednisone compared to last year's has one major difference.  Last year it helped a little with energy, but this time, I feel like my body is raging with adrenaline.  It just won't shut off.  Unfortunately, seeing as I had another dose today, I cannot foresee sleeping yet again tonight.  From all the experience with little kids that keep getting up at night, I am surprised that this side effect hasn't gotten me more "down".   I wake up the next day being tired, yet also feeling like I've slept the night before -- even though I haven't.  Normally, when I don't sleep for days, I would have a very difficult time coping.  This time, not so much.  I guess that is because I'm reveling in the experience of not getting tired all day.  My body just keeps going.  This is what it feels like to be human (for lack of a better word).  So for now, the displeasure of not being able to sleep much is far surpassed with the current joy of getting my body to move without ceasing.  This all being said before I head off to try another night of sleep, so I *might* change my mind tomorrow if I don't succeed.  I can't imagine how long my body will hold out without sleeping. At least I'm done with the therapy so it should eventually start slowing down in my system.

I had a good hour to dive more into the book that is challenging all that is within this confused brain.  I'll end today's post with a few paragraphs:

I've noticed before that people often don't feel like they have any choices when they're going through difficult circumstances.  They feel as if all of their options have been taken away.  And that's true to a certain extent -- but only to a certain extent.

You may not have had a choice on whether you could have kids or whether your loved one passed away or whether you got fired or your husband had an affair. 

But you do get to choose how you respond.  And in that choice lies an amazing amount of hope.  That choice is what makes the journey of transformation possible.

While life is uncertain, God is not.
While our power is limited, God's is limitless.
While our hope may be fragile, God is hope himself.

* Overnight Update:  Slept okay actually. Only was woken up by Jordan getting up at 5:45am to go to his exercise class (Mom.. where are my gloves?!).  However, upon waking I realized my lovely migraine was back from last week.  Am thankful for the sleep, and praying for the release of the explosion occurring in my head. Have a great day everyone! :)

Wow.. what a LONG night!  Julianna took the stage tonight, waking up almost every half hour.  I have NO idea what kept her sleeping so lightly, but perhaps the strong winds were keeping her awake. Finally by 2am I said to her, "Julianna, if you keep waking me up, I'm going to get more sick". She followed with, "Oh, I'm sorry, I won't call you anymore".  And that was that.  She was happy, and slept the rest of the night.  Me?  Not so much.  The winds were VERY strong, and something outside my window kept banging on the house. It sounded like some piece of metal, like a lid to a metal box slamming shut. I figured it must be on the roof and as it kept banging every other minute, I finally decided by 5am to listen intently as to where this sound was coming from.  I wasn't sleeping anyway (because of this loud, intermittent noise).  I still couldn't quite get a fix as to where it was coming from, so I decided to open my bedroom window, take off the screen and stick my head out the window (probably 6am by this time).  Low and behold, right outside my window was a loose bracket for a drainpipe, only nailed in on one end so the other was not fixed to the wall. If a gust of wind came that was strong enough, it would lift off the bracket and bang it against the house.  If ONLY I had figured that out 6 hours earlier I would have had some sleep!

It's amazing the "fake" energy that prednisone can give a person, for even after 2 nights of no sleep, I managed fairly well the entire day without getting too tired.

The day started with getting the boys ready for German School, after which Julianna, Kirk, Jordan & I went to A&W for a breakfast treat from Jordan.  (thanks Jordan!)   Believe it or not, the line-up was almost out the door at this place!   We all had a nice plate of easy-over eggs, two pieces of bacon and whole wheat toast (Julianna managed to scarf much of everyone's toast .. somehow without us noticing).  It was a relaxing breaky followed by a trip to the GAP to try to find Jordan a jacket.   We spent too much time looking at everything because of the 40% off sale and realized that it was nearing 11am (my next IV appointment time).  This left us without enough time to get home, so they just dropped me off at the hospital on their way home.  Without going home, I wasn't able to bring my normal bottle of water.  What to do, what to do.  Hmm.. one does pass by the Starbucks in the lobby on the way to the third floor general daycare.  Yes, I heard the coffee frappaccino call my name.  Unfortunately, I forgot to ask for it in decaf!! 


My IV site wasn't liking me much today, so at the end of the treatment I asked her to take it out, and I'll have another one lovingly inserted just for tomorrow.  A bit of a bonus though as I can shower tomorrow morning without having to cover my arm in plastic bags to keep the IV dry.   My symptoms today have been again, the metal taste, followed by an interesting session of skipping some heart beats.  That's always an interesting adventure .. mind you, that could have been caused by the caffeine too ;)

Being dropped off, I got to walk home, yes, uphill.  I think the build up of prednisone has gotten to me.  I walked home (at a fairly decent speed woo hoo!), followed by weeding and other gardening in the backyard, errands to several different stores, renewing the insurance on our utility trailer and a bunch of other "in home" things that needed to be taken care of and organized.   Where did this energizer bunny come from.  Wouldn't that be nice if it lasted.  I know it's a "false" energy level, because one does not feel this after not sleeping for two nights. I have to make sure I'm careful to not get run down and sick.   So, I'll write this and get to bed hopefully before midnight, and maybe SLEEP!!

During my time today in the IV chair, I ran across something in that book I'm reading, and I thought I would share its insights with you.  It states that hope is built into our being, yet asks the reader why we do not feel hopeful .. why do we rather feel despair.

I think your hope is still there, but you've fallen for the fallacy of false hope ... you may have been hoping for something instead of hoping for someone.  Hoping for something will almost always disappoint.  Hoping in God will always move toward something good, even if we can't see it.  It's in that vein that the book of James urges us ...

My brothers and sisters when you have many kinds of troubles, you should be full of joy, because you know that these troubles test your faith, and this will give you patience.  Let your patience show itself perfectly in what you do.  Then you will be perfect and complete and will have everything you need.  (James 1:2-4)

"You should be full of joy," James tell us.  Be full of joy when you face difficult times. Be full of joy when a dream dissipates or a desire is crushed.  And why?  Because you're about to be freed from a false hope and redirected toward a true hope.

That's what our difficulties can do for us if we let them.  That's what our painful times of waiting for God to act can do.  They can deliver us from our delusions, our misguided expectations, our egotistical dreams, and deliver us into the actual presence of the God who is our only true hope.  They can teach us the patience and trust to let God change us the way he needs to change us.  Rest in Him while you are waiting, and let Him be your hope.

I read that today, and it triggered with me as truth, but yet almost from a different world. In a sense, it is from a different world, at least when it comes to how my mind operates.  It seems such a foreign concept, to take my fears, hopes and dreams and separate them from the core of who I am, hand them over to God and let Him guide them.   I was always under the impression that hopes and dreams were sometimes things that He had given us, that they were a gift to us -- helping define who we were.  What if deep-felt dreams and heart desires, while still good, weren't something we were to seek after?  What if I'm putting too much focus on that, instead of seeking what He wants from me?  Lots to digest.  At the same time, though, in seeking Him, how am I going to definitively know what He wants for me? (Another of my life-long questions).

Too much to fully ponder tonight, that's if I want to get to bed before midnight!  So I'll leave you with that, letting you know the new questions I'm letting stir within me. I hope to make sense of them, and perhaps come out in a positive direction to where He really wants me to be.

Well, Ryan wasn't feeling well last night (but seems better today) so I wasn't able to get to sleep  until 4am .. and yes, up again at 7am.   I'm realllllly tired today.  Thankfully I didn't have too much on my plate so I was able to stay at home for the morning until I had my next IV at 12:30pm. 

The side effects have been a little different today. Yes, the same "metal taste" in my mouth, yet a bit stronger today, but also other things as well.  My IV site is SUPER itchy. I'll probably have them remove it tomorrow and do another site instead.  I didn't get through the entire 4 days last time either on one IV.

My feet have been burning a lot more today.  This is all just a wait and see game.  It's hard. My voice has been extremely crackly as well.  It's really frustrating, especially if I realize that MS is a downward slide .. and things will get worse.  I don't want to lose my ability to speak.

Jordan wants to take me out to breakfast tomorrow.. just a mom & son date, so that is a nice surprise.  Admist all the pain and fears in my life, it is mixed with some nice blessings.  Hoping that my next year provides more blessings and less of the MS ...

I'm having a bit of a heavy time emotionally today. It seems like I'm always in a great battle emotionally against all my losses -- both ones from past and ones that haven't yet happened.   The baby one is one of the hardest I think.  Babies and pregnant women are everywhere - a constant reminder.   I realize that my little one would be almost 4 months old now.  It's rough.  I do my best to focus on all the blessings (4 wonderful kids), yet the loss of my last weighs very heavy on my heart.  Daily I ask the Lord to life that sorrow.  It has not yet happened. It feels as strong as that day when they said to me "there is no heartbeat".  I wish I knew when it would subside. 

Anyway, thanks again for your continued prayers.  You are all a blessing to me and my family!

It was a VERY busy day for me today.  Going to the US for parcels, getting my kids to classes, picking up stuff at various locations and getting back in time to make lunch and get the kids fed, Julianna down for a nap and then off to the hospital for the IV.

At first, I thought I would walk, it was a beautiful day and it's only two blocks away.  I got as far as the garage and then had the enlightening revelation that I haven't walked that far in months!  Did I really want to walk there (downhill), have the treatment and then walk back UPHILL?  Uh no.

So, I got in the van quickly and drove to the hospital.  The problem with my change in decisions was that I had not brought any money with me.  So, I went to park the car, but apparently someone had informed the population that it was Christmas shopping time at the hospital, therefore, there were no parking spaces available AND there were dozens of vehicles swarming the parking lot looking for any person walking to their car to release a parking spot.    After a few minutes of circling, I finally found a spot.  Good. I still had 5 minutes to spare.  The only problem was that I now had to pay for parking, but with no money.  Argh.  I went inside and spoke with the parking attendant who told me that I could park there, and that the parking fee was only $17. (Does this person make $1000 a week or something?).  So, my only other option was to go back home and get the money and jump back into the "fight for a parking spot" exercise.   Oh, if only I had that handicapped parking sticker today!  I quickly called the hospital dept and told them I'd be late for my appointment.

I quickly drove back home and got my credit card and was back in a few minutes.  I finally found a spot at the very corner of the parking lot and ran into the hospital to pay for parking and get up to my appointment (ya, probably not the smartest thing to do).  The lady at the desk was very surprised that I was there so quickly (as I was only 5 minutes late).  She actually said "wow, you made it on time".  "On time?"  I was thinking.  Makes one wonder if the rest of the population always shows up late so 5 minutes late is actually considered on time.

My nurse was NOT adept at doing IVs and it was quite painful.  She kept "fishing" up the vein for probably 30 seconds, made a mess with blood everywhere.  Good thing my stomach was empty.  I sat there for the next hour, reading a book, listening to a man snoring next to me and texting a friend.  (I've had to up my text message plan for this one person .. but it's worth it).  Hey, Kirk has an iPhone, I have to have some fun too!

The rest of the day went well.  Just feeling a little off here and there, but nothing too difficult.  I did get to spend the evening getting my hair done, so that was a nice relaxing part of my day.  My body felt exhausted, but with the prednisone it made a strange "wired" feeling.  So, while my body was energized inside, my eyelids felt like they needed toothpicks to stay open.  Once home, I had many tasks to do (prepare breakfast for the crockpot for the next morning, and making almond milk to go with it), so I ended up not getting to bed until fairly late.  That's just the way it is with kids and family, always something to do to keep things in order and running .. and I wouldn't trade it for anything!

I blinked and somehow an entire day went by, once again.  Was it that quick for you?

Today was a busy day dealing with school stuff for the kids, followed by a trip into Burnaby for my MS appointment with my neurologist. I chose to take Julianna with me so she could provide me an easy escape through backed up traffic -- YEAH!  I could use the carpool lanes!

My neuro is somewhat on board with me not going the interferon route.  He knows I don't really like drugs too much and really there are may reasons why I have chosen not to try the many different injections out there for MS.  Today, he agreed with most of my issues with those treatments.

One is finances. Frankly, it's just something we cannot afford.   However, one interferon has recently been fully covered, so it would be no cost to me.  Now just figuring out if I'd ever want to go through all those side-effects!   At this point, NO.   He did, however, prescribe a four day IV prednisone treatment at my local hospital (which is only a block away).   I hopefully will start that within the next few days.   About a week after that has finished, if my fatigue is still mind-numbing, then he has given me a prescription for Amantadine.  Should be interesting to see if that helps at all.  Bottom line, he is going to set up another spinal MRI (to do some comparisons), we will do the IV and then go from there. 

Oh, and I will be getting a handicapped sticker for my van.  I can't even believe I'm saying that.  Will I use it?  That might be another story.  I have always thought that if I do use it at Costco, and walk out with my kids, I'd most likely be shot or at least have tomatoes thrown at me (because I don't "look" sick or handicapped).  I will probably only use it on those days where I feel like death is upon my door.   I am a very stubborn individual (no comments please ha ha) and maybe some pride mixed in there as well.  I'll certainly use it on those days when necessary.  I've had occasions when I've been completely taxed, yet had to do errands.  I remember going to Walmart, and only finding a parking spot VERY far away from the main doors. I found myself almost in tears thinking, "I can't walk that far AND do the shopping too!".   It was then I realized that there are days when I even need the help of a sticker.  

Oh, the donuts!   After the neuro appointment, we walked down into the lobby of the Burnaby hospital and there was Tim Hortons.   Wanting to make special little "dates" for my kids, I decided to buy Julianna a long john donut with sprinkles, also thinking it would keep her busy for at least half of the way home in traffic.  Unfortunately, I don't think it lasted far beyond the parking lot.   But thankfully, she promptly fell asleep (very common for a little 3 year old who is kept up from her afternoon nap!). 

Overall, a decent day and am happy I didn't crash with all that I had on my plate today.  Thankfully, someone brought a meal which was a life saver!  Hoping the hospital organizes the IV outpatient schedule tomorrow instead of later in the week.

Oh, and please remember to keep my brother (http://mervbest.blogspot.com) in your prayers. 

According to Einstein's special Theory of Relativity, the duration of an event depends upon how fast you are moving.  Time dilation can be described by postulating that two observers are in motion relative to each other, yet one observer views the timeline of an event as shorter than the other observer.  The faster the relative velocity, the greater the magnitude of time dilation.  Let's face it, after the age of 40, EVERYTHING goes faster!  Yet somehow for me, I'm frozen in a static reference frame.  Simply put:



I think I'm spending too much time with my self-proclaimed "physicist" son.

Today, someone asked if I was going to update my blog and let them know how I was doing.  Hmmm, didn't I just do that?   While I thought it had only been a day or two, I was surprised to find that it has already been five days!   Five days?  This could not be so.  I only remember a few.   Maybe there is some truth to this time dilation.   Everyone else's world is going at the normal speed, yet mine appears to be moving MUCH slower.  Granted, I seem to be in a robot mode of functioning only.  I get up (because the kids wake me up), do breakfasts, lunches, dinners and somewhere in between break up disagreements, pay bills, run errands and throw in some education now and then.  Beyond that, I'm not sure there really is a world of leisure out there.  (Oh, and as a sub-note, thanks to all who bring meals, it's been a life-saver!).

That's not to say that I mind doing what I do .. I guess my point is I am wondering how five days progressed without me noticing.  Guess it might be time to clean that film off the walls of this fish bowl!

Okay -- you've asked, so here is the update:

The last day I wrote was actually a good day compared to the day following.  I pretty much melted down that following day and didn't think I could cope beyond that moment.  Thankfully, a trusty telephone call to my brother helped me from crashing completely.  He is always such an encouragement to me, and even though I don't always understand his advice (I am a slow learner), I do my best to take all his advice to heart.  So thank you Merv, for once again picking me up and carrying me.

Physically, it's been a rough week of migraines and unexplainable body sensations.  I often wake up at night feeling like my body is not my own. It's a feeling I cannot explain, so I won't even try.  My numbness in my hands has increased.  My fatigue has greatly increased.

I finally ventured out to contact my neurologist (whom I haven't seen since last July), and I have an appointment tomorrow to go over options.  I'm hoping he'll subscribe a course of IV steroids, but I don't know for sure if he'll agree to that.

Bottom line -- I'm so tired of this crazy fatigue. Sometimes I feel I can't even get off the couch.  It does feel like it's getting worse, and then at other times, it's better.  Can it really go in both directions at the same time?   I have far too many questions.  This whole process of dealing with MS has my head spinning, and at times it's almost comforting to pretend to allow myself to believe it's only a nightmare.  Often I think if I just shake my head enough, I'll wake up and realize it's all been a dream.   I know that's not the case, but part of me sometimes comes to a point where it would be a much better option emotionally.   And again, we are back at the beginning.  How do I deal with all of this?  Where do I place myself in this world.  What is my role?  What is my significance?  Questions which constantly swirl around in my head.  Sometimes I find the answers for those questions, and I feel like I can almost close the door to asking them again.  But later, the overwhelming nature of my present situation and unknown future seems to overload any security and it starts again.   I'm working on it.  If I've confused you a bit by what I've written today, I apologize.  I'm in that head-spinning point of view at the moment.  If anything, if might give you some perspective into my confusing world.

Bottom line:   your continued prayer is so essential to our survival as a family.  This process is stressful to every member of our family.  So thank you for your prayer support, encouragement and friendship. The support from family and friends has been such a blessing.  It's after midnight so I can't blame tonight's poor sleep "only" on my MS -- I'd better sign off.

Now if I can find an existence without time dilation, I should be able to update you on tomorrow's neuro appointment relatively soon.

Yes, apparently it is that time again when I overwhelmingly feel like my world is falling apart and thus lose all sense of hope.  I know from experience, that this feeling may not last forever. I may find a day where I see a glimmer of hope.  But for now, that door has been closed and I'm feeling pretty crappy.

Yesterday my voice issue got worse.  If I spoke too loudly, my throat would vibrate and it was NOT a good feeling.  I wonder if that's what dogs feel with dog barking collars.  Almost like I would get zapped if my voice level was too high.   Fun.

Later afternoon my neck started feeling tight again around the collarbone area.  Not sure why.  Thought I'd take an aspirin again in case I was having some type of blockage, but not entirely sure this was a wise decision.  Over the course of the evening, my numbness started to greatly increase, ringing in my ears returned and my body switched over to some type of alien being, one that felt like it was on earth, but wasn't supposed to be.   Everything I touched caused discomfort. My entire body felt like it was hooked up to the electric current of our house wiring.  If my hands or feet were to touch anything, it produced a feeling that could be likened to wrapping your fingers tight with a string to the point that you lost all feeling and the pain starts to increase.  The only problem is if I move them to take the pressure off, it just creates the feeling of pressure somewhere else.  I wonder if I could perfect some type of levitation device so I don't have to touch anything?  Driving becomes quite an uncomfortable task, unless I find a way to not hold the steering wheel. Typing? Same thing.. pressure on the fingers.  using a knife and fork to cut anything of substance is something I'd rather not repeat.

I lay in bed, wondering why God didn't just grant me a disease that was quick and had some finality to it.  At least then there wouldn't be this long, drawn out suffering.   I have prayed and hoped for so long .. only to have things get worse, that I don't think I hope any more.  I'm probably too scared to even hope for hope.  I feel like I live in a glass fish bowl.  I have little fishes to take care of, which sums up my existence.  Yet I have this disease which keeps me from doing much swimming or anything else.  I look through the glass at the world outside the tank, and feel such pain that I cannot contribute or participate in the life outside.    I am stuck.  I have no choice.  I feel like a prisoner.  I guess the best way to describe it could be hell on earth.  I feel like a shell of a person.  What can I contribute?  I do what I can but I'm so tired of feeling like I'm just a burden to all my caregivers.  Why did God create life?  Why are we here?  Are we here to take, take and take some more?   The anatomy of a disease should be that it kills quickly, at least then it would have some mercy.   Or maybe that's the point .. to be long and tortuous.  Maybe I should just be mad at Adam and Eve.

Are we built to take pain day after day?  How long before your spirits are completely crushed and cannot continue?  This is a life of existence.  There is no flourishing.  There is minimal joy.  Maybe a few joyful moments when kids do something quirky or silly.  But I cannot look at tomorrow.. at all.   I fear what tomorrow brings, mainly because I have nothing left in me to fight anymore.  I have no choice.  I must continue minute by minute.  I wish I had been given a choice sometimes. This feels like a nightmare in which I am not waking up.  I hate looking at photos of a few years ago, before diagnosis, before any symptoms started to pop up.  Those were days of true joy, I would give anything to go back to 2006.  But I cannot.

So I apologize for my pity party, amidst the update of my symptoms.  I'm sure I'll find a way to cope again soon.  But I'm beginning to realize these feelings of loss and being beaten down have always been there, and probably will always be, even if I find new ways to suppress them, or deal with them. I am not a strong person. I never have been.  I so long to just be told everything will be okay, soon.  But I can't let myself go there.  I will fall apart.  I need to focus on what the next meal will be, resolve the next fight over lego, and figure out how I'm going to get the chores done that loom over me.  Anything beyond that currently does not exist in my fishbowl. I'm just so tired of holding it all together.    I so much want to just let myself fall apart and give up.  I do not want to fight.  But I know what that brings:   more pain, despair and the inability to cope.   So, against my will, I have no choice -- I must put one foot in front of the other and continue to exist.   Time will not stop for me.  It moves on without me.  So I can only choose to stop and give up, or to keep going with this body that I did not sign up for.  Without my precious children, I would not get out of bed.  For my kids, I will keep going.

Patience has NOT been a virtue of mine.   (Yet another thing for me to work on!).  It's been a pretty challenging week in relation to fatigue.  My hubby went on a trip to South Carolina four days ago, leaving me to single parent.  While this really isn't that difficult on a normal day, when I'm fatigued it really is a challenge.  Throughout the past few days every couch or chair I have walked by, has beckoned me to collapse into a state of unconsciousness.  Alas, that is impossible with little children in the house!

Fighting despair, depression, or any other feelings which try to penetrate deep into my soul, I decided to look back into my blog to the weeks and months following my first procedure (May 20, 2010).  My hope was to find some encouragement that YES, things will get better.  Low and behold, there it was.  The evidence almost mirroring my physical state of today.   Post-procedure in May 2010, I was feeling rather horrible until at least a few months in.  At this stage where I'm at now (one month post-procedure), I was actually starting up IV prednisone treatments because of increased numbness.  I would say at this point, my numbness is about the same as before I went in for this latest procedure.  I guess I can take that as a good sign?  I know that by the 2nd month after my procedure last year, I was feeling great (energy-wise) so I pray that this is something on the horizon for not only me, but also for my family.  Patience is so difficult.  My entire being so desperately wants healing NOW.

I have been reading a book this week which has been a real encouragement for my soul, retraining my thinking to stop battling with God over this entire painful process called life.  Here is a quote from the book which I found especially interesting:

The question is this:  What would you do if you were absolutely confident God was with you?    Suppose you go to the doctor to check out a few annoying symptoms, only to find out you have multiple sclerosis.  What would you do if you were confident God was with you?  The point?  Simply this:  When you respond in your current circumstances as if you were confident that God is there, you will see God in the circumstances.  Maybe not immediately, but eventually.  Because the simple truth is that God IS there.  God is always there.  The problem comes when we allow our circumstances to distort our perspective and we miss God.

One more full day before hubby comes home.  I will have then survived 5 days on my own.  Sounds absolutely silly and ridiculous to hear myself say that.  I have always been able to take on anything.  Five days on my own without another parent?  Is that really such a big deal?  I must say I miss his encouragement and prayer for me in the mornings.  It really helps to start my day in a positive direction.  We take turns making the coffee every morning at 7am and bring it back to the other person in bed, while the kids watch a DVD (yes, all in our king sized bed), and we then share a loud (it's never quiet in our house) and giggling few moments together: sipping coffee, tickling the kids while they try to watch their DVD -- it is some of our most precious times together.  I really miss that.


So really -- what's the big deal with parenting on your own for 5 days?  Without energy -- it becomes a very daunting task (unless of course one employs Alice [from the Brady Bunch] to help out with all the meals and housecleaning .. then it wouldn't be so difficult).  Don't get me wrong, I am not complaining about having to be a parent (even if on my own).  My kids are a HUGE blessing to me, as not only do they provide me with constant love, affirmation and joy, they keep me from giving in to self-pity and they definitely keep my momentum going.  So I pray for the strength to do what I need to do each morning.  I pray for the strength to look only at the few moments ahead, not at next week or next month -- just today.   The only problem with placing those blinders on is that it makes me feel as though life is running off ahead without me.   Again, back to the challenge of finding (and trusting) God in all my circumstances.