For times like this, God knew I needed my best birthday present ever. Let me explain.

I was nearing my 40th birthday. Things were great. I had my oldest son who had just turned 14, and two other little boys aged 2 and 4. Life was joyous and full of adventure (and perfect health, I must add). We had some friends from out of town come to stay with us for the weekend, with their two teen boys. I love being with friends and even more so for an entire weekend, especially my birthday weekend! It was an amazing weekend of laughter and filling up of my "friendship" tank! The best part of the weekend, however, was waking up on my 40th birthday, and noting a pink + on the pregnancy test. My birthday present was another little blessing! Little did I know it was a girl. I often tell Julianna the story of waking up that morning, taking the pregnancy test and realizing that my best birthday present EVER was her.. my little girl whom I will love and cherish forever. Jesus gave me the best birthday present that day. Often when I put Julianna to bed and pray with her, I will tell her "I love you, you're my ..." and I wait for her to finish my sentence with her cute little voice, saying "best boifday pwesent eh-voe".

Sometimes I can make it to church on Sunday mornings, other times, it's just too hard, either physically or emotionally. Today, despite my pain I decided to make an effort and go with the family. Worship was wonderful on this Easter Sunday, a time of celebration. However, something that happened last night made things a bit more difficult than I had anticipated.

With taking LDN (low dose naltrexone) for the past 3 nights, it can make your dream world a bit more vivid. I don't normally remember my dreams, but in the past three nights, I have remembered them all. Last night's dream was definitely a bittersweet one. I was talking with a friend about carseats and when it would be appropriate to change from a rear-facing seat to a front-facing carseat. It was at that point that the visual focus of this dream 'movie' panned over to the carseat beside us and I said "I won't be changing her carseat until another six months from now". Right there before my eyes was my sweet little baby girl, six months old. I promptly woke up. My heart was aching. Why would I dream of the baby I had lost last year? I thought it was odd that my dreams had gone from just sadness of loss to my baby having been born. I then calculated how old the baby would have been right now, and it is now exactly six months since my due date. Wow, exactly six months! How odd was that?!

I have been praying so hard, asking the Lord to heal this hurt, to fill the hole that was created upon this loss. Today feels as fresh and painful as the day I found out the baby had died. I ask God often WHY .. how long until you take this pain away. I have so much to be thankful for, why does this one loss have such long-lasting power over my heart?

I chose to get up and move on. It was only a dream. I would count my blessings and go to church with my family. Sitting just in front of us was a little baby, and Kirk knew I would find this difficult. Some of the songs we were singing were about God taking our pain, healing our hurts. I sang those songs in faith. I don't feel it, but I will sing it in faith. Tears brewed in my eyes, the dream really messing up my resolve to continue with life.

What really blessed me was during the coffee break some people came to pray for me as I sat in my chair, unable to move. I felt totally messed up. Both with physical pain and the emotional chains that had held me once again. Their prayers were encouraging and so supportive. I could at least say that I did not feel like I fight my MS battle alone. It was exactly what I needed at that moment. So thank you! (you know who you are).

After the service we engaged in worship once again, only this time, some people were rhythmically dancing to the music (in worship) but one lady in particular, came over to our side of the room, right in front of us and danced with a little baby in her arms. Kirk leaned over and said to me "wow, you're really getting your buttons pushed today, aren't you?" Big time. I just want this pain to go away. I know the rest of the world will continue to have children. I know there are those who don't have any and wonder why I'm having such an issue when I already have four. I really don't know the answer to that. I just know there is a huge hold in my heart, and it doesn't seem to heal, despite my best efforts (and prayers).

Just when I thought the floodgates would open once again, my eldest son, Jordan, brought Julianna out from Sunday School. Worship was still going on, and Julianna saw me and ran over to me. I scooped her up and she hugged me like she hadn't seen me for month. She kissed my cheek over and over and said "I love you mommy". It's amazing how my little girl's hugs can heal so much pain. In that moment, I felt loved and comforted. God knew I need my "best birthday present ever".

I got a call from the nurse today. My first injection of copaxone is set for 5pm on Tuesday. WHAT HAVE I DONE! I told her she could always come next year instead. I HATE needles.. this is going to be so difficult for me, and doing it the rest of my life? Shoot me now.

I'm not really sure I have a choice. I prayed that if God wanted me to go through with doing Copaxone, I would have the financial assistance approved that I had applied for. I guess my heart sank when I was approved. Good that financially we are covered for the $1500 monthly expense, but 'bad' when it comes to having to inject yourself daily. It means so much more is added to your daily life. You go on a holiday, you must pack all the needles (and keep them refrigerated). Going away for the day? Make sure you bring your injection with you.. It's almost as though I'm going to be reminded even more of the disease that has claimed so much. I pray that God can carry me once again, into something I think that I cannot do.

To add more fun and challenge to the mix, I've discovered recently that I'm highly intolerant to gluten. Oh joy. Apparently my youngest son is as well. This creates MUCH challenge for meals and snacks. With my already low appetite, I just prefer to not eat anything. I know that's not an option, so I make myself eat, but I'd really prefer to take a pill to replace my mealtimes! (or just eat ice cream all day .. oh wait, that's only in my dreams).

The last two nights I've taken the 1.5 mg of LDN. Seems to be going okay. I do have wild and crazy dreams at night, but my sleep is much deeper and while I crashed last night and was nauseous for about 8 hours, today I'm a little better -- exhausted still, but no nausea and I haven't laid on the couch yet (as of 6pm).

I've had some pressure in my neck for the past month off and on. Am hoping that it's not an indication of vein blockages. Sigh.

My brother is safely out of surgery ...  answer to prayer!  I am so excited about his hopeful outcome. (http://mervbest.blogspot.com)

On another note, I'm going to start trying LDN tonight..   hopefully I don't get any adverse reactions.  Mind you, I'm a little more pensive about my upcoming copaxone injections.  I have them in my fridge, I have all the "gear" ..  just waiting for a nurse to come and show me how to use them.  Still thinking this is part of the nightmare.   As I get nauseous around needles, I am thinking this is going to prove to be very interesting indeed.

CONGRATULATIONS MERV on your first step to feeling normal !!!

It's very easy to relate to David in the Psalms.  I'm sure there are times when we all can relate .. when we desperately cry out to God:


Psalm of David (Chapter 22):

In one quick thought, I find my mind whirling around the circumstances of my life.  In one second I see what life was like, my diagnosis, my loss of baby, watching people live life while I watch from a distance, wondering if this is all a nightmare.. it MUST be?!   ... all within a second.  Makes one feel dizzy.  

I don't ever seem to lose the heaviness in my heart with all these things.  I keep praying to God to carry me, to lift me ... but each day I continue to physically decline and a little more of my heart and joy in life disappears.  I struggle to maintain positiveness in my life .. to give that to my children.  I don't want them to see me sad.   My heart is also heavy for my brother, with Parkinson's, who has a HUGE hope for him in an upcoming surgery this next week.  I SO pray that this is a turnaround in his health.  I also worry that if anything happens to him.. I don't think I could deal with that.  He is such a huge support for me.  He feels so much of the same symptoms I do .. it's like we're twins (except he is the wise and brave one).  Without him ...

God I don't want to even think the thought that this might be my existence until the end.  Do I dare continue to pray for healing?  Will you hear me?  I know you hear me.  But do I dare believe that you might grant my request?  I'm scared to  hope for fear that nothing will happen and I'll become bitter.

I feel lost ...


"Breathe Into Me"
by RED



And this is how it feels when I ignore the words you spoke to me
And this is where I lose myself when I keep running away from you
And this is who I am when, when I don't know myself anymore
And this is what I choose when it's all left up to me

Breathe your life into me
I can feel you
I'm falling, falling faster
Breathe your life into me
I still need you
I'm falling, falling
Breathe into me
Breathe into me

And this is how it looks when I am standing on the edge
And this is how I break apart when I finally hit the ground
And this is how it hurts when I pretend I don't feel any pain
And this is how I disappear when I throw myself away

Breathe your life into me
I can feel you
I'm falling, falling faster
Breathe your life into me
I still need you
I'm falling, falling
Breathe into me
Breathe into me
Breathe into me
Breathe into me

Breathe your life into me
I can feel you
I'm falling, falling faster
Breathe your life into me
I still need you
I'm falling, falling
Breathe into me

Breathe your life into me!
I'm falling, falling faster
Breathe your life into me!
falling, falling, falling
Breathe into me
Breathe into me
Breathe into me
Breathe into me

Cherry Blossoms AND snow ? !

I woke shortly before 7am this morning, and turned my head towards the window.  Confusion set in when I saw something white and fluffy falling from the sky.  Surely I must still be dreaming. It only snowed once all winter here, how could it be snowing in mid-April?  But, I WAS awake.. and it was dumping!  Quickly I got everyone up (yes, even my 18 year old) to go outside to "play".  I realized that I would expend all my energy in the hour that I may be outside, but it was worth it. This was MY time.

We started to shovel the driveway (because to me, that's very entertaining for me!) but quickly realized that this unforecast snow would most likely turn to rain so we had to focus our efforts on snowman building.   Julianna wanted to make her own, so we helped her make her little version of the snowman.

Am thankful that the steroid puffer we have been using has helped Julianna's breathing issues, and last night she actually slept through without any incident.  YEAH!  Feels good to get a decent sleep. 

But wow.. just didn't think I could get worse so quickly, even with a decent sleep.  In the last few days, my hands and feet have become so super-sensitive that just putting any pressure on them is soooo uncomfortable.  Not really a convenient thing as I don't really know of any times that you have your feet suspended off the ground, not touching anything. Same with hands. You are ALWAYS touching and grabbing things, putting pressure on your hands.  Cutting meat, opening jars, pressing the buttons on the stove and many other things prove to bring more discomfort. I often find myself unknowingly holding my hands up in front of me, my palms up .. almost as if I am holding breakable air, careful not to disturb its existence.  I then realize what I'm doing and know it must because they hurt and subconsciously I'm trying to cradle them towards me .. much like a whimpering dog licking its wounds.  Interesting, the psychology of it all.    Yep, still broken.

I managed to get to church today, knowing friends would be there. I so miss interaction with the normal world.  We invited a bunch of people over for lunch after which was very life-giving to me.  So why did I also make chocolate chip oatmeal cookies for my kids after dinner? Ya, I don't know.  I haven't learned yet how to be a successful (or willing) couch potato.  However, as the day wore on, I ended up getting very weak. At this point, I feel like an 80  year old, barely making it up the stairs.  Taking my much needed breaths requires a lot of energy.  There is nothing I could do tonight other than sit or lay down.  I'm exhausted.


Praying there is some resolution to this cage I live in .. thanks for all the encouragement from so many lately.  While I feel totally broken and crushed, I do not feel alone.

I am wondering when this fight will end.  The fight for normalcy, the longing for the things that bring you life.  The world is so grey, so full of heartbreak.  Is this what God calls us to?  Does He allow us to get completely broken so we are perfected for heaven?

Five days ago, a storm hit my body, one which was difficult to recover from. I was already struggling with enormous fatigue, but on Sunday night, I could feel the decline setting in and by Monday morning, I could not get out of bed. I spent the next 3 days staring at the ceiling, wondering what I did to my body to make it hate me so much. Makes one wish that we had cable TV (as it gets boring counting the dots on the ceiling).

Today, I made myself get dressed and push through my day. I was walking down the grocery isle today, when all off a sudden I  had an urge to just flop down on the floor and give up -- just start wailing, crying and say "ENOUGH .. I CAN'T TAKE ANYMORE".  I'm sure the grocery clerks would thank me if they had known what was rolling around in my head and that I didn't follow through with it.  I continued to drag one foot in front of the other and instead choked down my tears.  How long Lord?  Is this what the rest of my life will be -- a continued degredation of my health?

I can honestly say that I hate summer.  Rainy, wet weather is what I feel at home in.  You see, with summer, comes increased activity -- and it's this activity that I'm somehow cursed to avoid.  I am forced to watch from the sidelines, when what I so desperately want is to be a participant. My boys remembered a long time ago when some friends of ours and our family played (light) hockey on our driveway.  It was a fun and rousing game!  They proceeded to tell me today how sad they were that I can't play with them anymore. They wish that God would heal me so I could play hockey, and tennis, and swim (and the list goes on) with them.  Oh how my heart breaks and breaks.   My dream growing up was to be a mom -- and one fully involved in their lives.  It is so crushing for me to say "I can't" over and over again when they ask if I can play, or go for a walk, or chase them around the house.   If I'm to view God as my heavenly Father .. that's a hard one to swallow, for I would NEVER wish such sorrow on any of my children .. even if I knew that down the road they would/could become a better person for their suffering.  I just don't see the value.  On the other hand, I don't see a value in pampering oneself, but shouldn't it be okay to want some type of relief or normalcy in one's life? I pray and pray for healing, even a little bit would be welcomed -- but I hear nothing. Do I give up? In reading other people's stories of lifelong suffering, it doesn't make me all to hopeful that there is healing out there for me.

I really don't think I was made for this type of suffering.  My brother (with parkinson's) seems to have "made it" to the point where he sees suffering as a blessing.  I have read books from Joni Eareckson Tada and lately a person who has fought multiple cancers in her lifetime and still don't know how to get to a place where "suffering is good".   I struggle so greatly with God's love for me.   I feel abandoned. I wonder why he let me have these desires in my heart to love and play with my children, a love for being active and a multitude of other desires of my heart that are broken.   That's it -- I am just broken.  I cannot seem to get to a place of healing, to become "unbroken".   I feel no joy. I feel no peace.  I go through the motions day after day, praying for some resolution of my struggle with this disease, for some hope, but things just continue to decline.  Will God be forever silent to me?  Must this be a journey of constant trust that He is God and I must just struggle through my existence to the end?   That is what I do not think I can do, at least with grace.   I am broken.

I constantly try to focus on the blessings of my life, and push away the hurts of "I wish you could play with me", yet everywhere I go, I see people doing normal things that I know they take for granted.    I find that I do not have the strength to fight the brokenness .. I am so tired of laying in bed, so tired of having to let my family do most of the work.   I am not wanting to be a burden.

I'm in the process of researching the cost of copaxone - not really relishing having to give myself needles daily the rest of my life, but I don't know what else to do if God doesn't show up.  Also, I'm going to see if my doc will prescribe LDN ... and see if that helps with my fatigue.

Once again, forgive me for my style of music -- it expresses the turmoil within. (I'm sorry, but country music just wouldn't fit hehe .. Feel free to just read the lyrics without the music, but for me, it just isn't the same).   This song, for me, talks of the battle that I feel with giving up vs. pressing on, with mourning all my losses and fighting against the constant thoughts of "I just can't do this anymore".  I am so thankful for my wonderful children.. without them, this road would be much more difficult.  (PS .. my hubby thinks this writing sounds suicidal.  I assure you, I am not. I just feel I am in a place devoid of hope.)



RED - "Fight Inside"

Enemy, familiar friend,
My beginning and my end,
Knowing truth, whispering lies,
And it hurts again.
What I fear and what I try,
Words I say and what I heard,
All the pain, I want it to end,
But I want it again.

And it finds me,
The fight inside is coarsing through my veins,
And it's raging,
The fight inside is breaking me again.

It's still the same, pursuing pain,
Isn't worth the lie I've gained.
We both know how this will end,
But I do it again.

And it finds me,
The fight inside is coarsing through my veins.
And it's raging,
The fight inside is hurting me again.
And it finds me,
The war within me pulls me under.
And without You,
The fight inside is breaking me again.

It's nothing.
It's everything.

It's breaking me.
I'm falling apart.