It has been quite some time since I've posted an update .. and in a way, it was intentional.  I've had some people email me .. asking if everything was okay, so I figured it was time to write something.    

It has been a fairly rough month, both emotionally and physically.  In the beginning of June, my numbness started to increase.  My fingers which were numb, then became the hands that were numb, and then finally my left foot (which has never been affected) started the process of losing feeling. This was so disheartening to me.   A few weeks ago, I struggled so greatly with where my physical body was going -- I had NO energy, and my body was increasingly steering itself towards the world of no feeling.  I felt I couldn't handle this change at that moment, and inwardly struggled with depression.  It is so difficult to feel all those "pangs" of pain, and realize it's your body slowly trying to kill itself off.   How does one wrap your head around that?  How do you maneuver throughout your day, amidst the pain, and find the joy in the moment?  Others who have suffered so much more do it .. yet it remains a mystery to me.   My brother encouraged me a few weeks ago amidst my struggle.  Whenever it seems I cannot handle what I'm going through, I can always call him .. he encourages me, prays for me and even though he lives far away.. I feel so comforted -- almost like he has hugged me over the phone lines.   I don't know what I would do without  him.

He told me that people will write a list (mentally or physically) of the things that are issues in their lives, asking God to deal with those things.  For example, I would say "God, you know my issues with my health.  I pray that you would heal me.  I can't accept this getting any worse and I really will only believe that you WILL heal me and that's what I'm going to accept as reality".   He encouraged me to view it this way:  instead of writing my lists and concerns and handing it to God, expecting that He will fix all that is on my list, I should hand over a list to God that is completely blank, meaning that I am giving God full reign -- still praying for healing, but accepting the path that he guides me on.  Instead of becoming bitter that so many trials come my way, still pray and ask for healing or whatever need it is, but at the same time, trust that He is carrying me through and focus on the joys that He has provided, claiming that "God is enough" to carry me through.  What a TOUGH thing for me to do. I want to be in control of my future.  I want to be here for my kids, physically as well as emotionally.  To say "God is enough" daily is something my entire being struggles with.   This feels like a process of breaking down my issues with control.   I am hoping that if I press through this, that I will become like all those I know (and have read about) that only have good things to say, who only remain positive, even when life looks like it is crumbling around them.  What a giant mountain for me to climb.

So, as I struggle with diminishing feeling in my limbs, and as that translates into greater pain, I continue to fight with choosing to be positive.  I find it difficult now to stand or sit too long in one position.  The pressure on my feet becomes painful if I do not move them frequently.  Even wearing shoes is becoming a new torture technique.  Yet, alongside that degradation of health, comes a new-found energy level.  For the past week, I have not had fatigue.  I have been VERY leery of being verbally positive about that improvement .. because (as many of you MSers experience) today's energy can be completely swallowed up by tomorrow's physical crash.    But now it has been over a week with this renewed energy.  I continue to fight with depression over the losses my body has encountered in the past year.   At the same time, with this renewed energy level, I feel almost in a "rush" to enjoy all that I have been missing the past  year.   I haven't played much with my children since my diagnosis of MS and first serious attack back in July 2009.  It's hard to believe that only last year in June, I was hiking through forests, carrying my 2 year old without difficulty.  

It has saddened me deeply that I have not been an active part of my children's past year.   It breaks my heart to constantly say "I'm sorry, mommy isn't well enough to do that".   So, I guess I've turned into the energizer bunny this past week.  I've gone to Science World, followed by the Vancouver Zoo, done an entire day celebrating the in-laws 50th wedding anniversary, then followed by a busy Sunday enjoying a picnic at church with friends and then out for a movie night with some dear friends.  Maybe it's my "rush" to fit in many things while I still can, but we decided to go for a short trip to the Washington coast this next week.   I want to play with my kids!  I want to fly kites, build sandcastles, and just spend quality time with them without having to pay bills or clean house.  I feel like I've missed so much this past year that I need to do this, and I'm SO excited about making up for all the "I'm sorry I can't" replies I've given them.. I just pray the Lord grants me the continued energy to do this with them.  It feels like healing for a broken part of my heart.

On the friendship part of things, this is another blessing for me that has taken place recently.   I've always been an introverted (and insecure) type of person.  It's always been something I have struggled with.  When one is insecure, it's a bit difficult to make friends.  You tend to come across as "snobby" and elitist, which really doesn't help your cause when wanting to build friendships.  I remember praying years ago for God to bring friendships into my life.  Many grow up having close friendships, and some may even have had a best friend.  So many "ah ha" moments happen when you "grow up".  I used to believe that once I got married and had children, life would finally be "perfect", I could then "continue on" with my life and everything would be wonderful.   I've had to learn to lay down a lot of my childhood misconceptions and I guess that's where the friendship question comes into play.   Can you have strong friendships as an adult similar to that which you had as a child?  Years ago I prayed, asking the Lord to provide me with close friendships.   Looking back, I see that it has been a slow process, with a friend here and there.  I am truly grateful for those who have stuck by me throughout the years, especially when I have been so immature and probably not the best friend in return. 

Tonight I have tears in my eyes every time I think about that prayer I prayed so many years ago.  I felt like for years, God was ignoring my request.  I would watch people in my church, seemingly having so many friends, and yet I only had a few.    Did I smell bad?  (ha ha)    
A few weeks ago, amidst the time when I was in much pain with little to no energy, I was going to ask one of my good life-long friends to go to a movie with me when it came out this past week.  Yet, I had the impression that I should invite other people to join us.   Hmm... really prefer to be comfortable and not "put myself out there".  Again, insecurity runs deep within me.   I chose to take a deep breath, and proceed to invite all the people that I wanted to get to know more.  Long story short, there were seven of us tonight that went out to the movie, followed by a roaring time at Starbucks .. I haven't laughed that hard in years.   What joy that brings to your soul.   I feel so blessed tonight -- seeing that God has in fact answered my prayer, it just took years to do so.  

I continue to pray for the Lord's healing in my body, and for emotional strength to say "God is enough" for all that I am going through.   Yet tonight, I am so thankful for his gift to me of new friends.  I know they aren't aware as to how much they have blessed me tonight.  My cup is full.
I have felt a bit more energy the last few days.. allowing me to start walking around our lake.  It felt absolutely wonderful to have that feeling, that I have the ability to do that which I love to do -- exercise.  Granted, walking around the lake is (in my former way of thinking) barely considered exercise, but considering where I've come the past year, it's certainly a lot more than I've been able to do for quite some time.  I was able to take the kids to Science World yesterday -- something I didn't think I would ever be able to have enough energy for again!

My little Julianna had a fever last night, so I was up with her a bit .. so less sleep.  This morning, I continue to feel achy and numb.   What I do notice as a change, however, is that my right leg, from the knee down to my toe, feels like it has a hundred pound weight on it.  Whereas before it was numb and tired, now it's just so heavy that I have to strain to walk normal.  Rather than an intentional gait, it is now my right upper leg starting the process of the step and the lower leg somewhat swinging forward in response.  This is not a happy feeling!!

The concept of my leg getting worse is not an easy one to swallow.  Why do I seem to continue to get worse?  Is there another blockage?  It makes me wonder if I should spend MORE money to try to get it checked again .. but where would that come from and more importantly, which local professional would even be willing to look at it?  Exactly.  So many of us are in the same boat.

So I continue on during this first day of sunshine in quite awhile... praying that I'll be able to still walk as this body continues to age.   I think that's one of my biggest fears -- losing the ability to walk.

Lord help me to see the joys in the little things around me today and not focus on the fears of the future.

Merv .. this is for you my brother, as we walk this difficult road together.

(view his blog)

"How Can I Keep From Singing"

There is an endless song
Echoes in my soul
I hear the music ring

And though the storms may come
I am holding on
To the rock I cling

How can I keep from singing Your praise
How can I ever say enough
How amazing is Your love
How can I keep from shouting Your name
I know I am loved by the King
And it makes my heart want to sing

I will lift my eyes
In the darkest night
For I know my Savior lives

And I will walk with You
Knowing You'll see me through
And sing the songs You give

I can sing in the troubled times
Sing when I win
I can sing when I lose my step
And fall down again
I can sing 'cause You pick me up
Sing 'cause You're there
I can sing 'cause You hear me, Lord
When I call to You in prayer
I can sing with my last breath
Sing for I know
That I'll sing with the angels
And the saints around the throne
Update on Symptoms:
  • Continued numbness on right side (and left arm)
  • Body feeling constantly achy in the bones
  • Weakness in my legs and especially arms & hands
  • Right leg extremely sensitive to touch
  • Bladder issues continuing
  • Extreme fatigue
  • Tingling throughout my body, much like I'm being poked with tiny needles
  • I cannot bend my arms or legs for more than a few minutes without losing some circulation in them.  ie. if I sleep with my arm bent at the elbow, my hand will become cold.
On the improvement side:
  • Limp is still gone
  • hands still fluctuate between cold and warm

Well, it's been a few weeks now of this fatigue and pain. I'm beginning to think this is my new "normal" -- where I long to just be in bed.  Part of me wants to scream, part of me is complacent and defeated yet another part of me feels like I got ripped off. 

Let me explain.

I am hearing of so many people receiving treatment for CCSVI, and having their azygos vein checked and treated. I am not even sure that mine was looked at!  I felt so great the first week post-treatment, where my left vein was ballooned.  I felt like a gift was given to me, and then taken away.  Is my physical decline just because I was "due" for another MS attack and I will get better down the road?  This is all part of the waiting game.  It is so difficult to just take this one day at a time .. waiting to see if I physically improve.  I have had to stop reading people's stories of their Liberation .. it's just so hard to constantly see people have these miraculous recoveries, while mine seems to have stagnated.   Does treatment of the azygos vein mean the difference between increased recovery and plateaus?  Would I have had greater recovery if my azygos vein had been treated?  I wish I had the answers.   

My sister had angioplasty done for a heart issue, and she told me that post-procedure, her heart still had the same issues as prior to surgery.  She thought that the procedure didn't work, but months later, she no longer struggles with the heart problem that she had before.. the procedure worked!  It took time to heal.   This is what I have to cling to -- that perhaps I need months to heal and that this is just a long recovery road for me.

I find this time of my life to be the most challenging so far emotionally.  People keep telling me that I am such a strong person -- yet inside I feel like a broken person, each day striving for the strength to remain positive and upbeat for my children and others.  (Even my hubby tells me he wishes I would be stronger).  Maybe this is all part of God's plan to perfect my character.  Have you ever prayed, "God, increase my faith, change my character to become more like yours"?   Hmm.. I think I have.  And (jokingly), I sometimes wish I could go back and retract that request!   Seriously however, no one finds character-building easy.  On hard days I wish I could go back to being 4 years old again, a time when things were simple and easy -- a time when mom would bake cookies and cuddle me after I woke up from naps.  My reality, however, is that I have MS.  Some days it feels like a nightmare -- an unbelievable turn of events which I wish I could wake up from.  It is my constant struggle with becoming bitter about my life and the other option of embracing all that the Lord brings my way, with grace and thankfulness.   I pray that I can be a positive witness to my kids to follow the Lord in whatever life brings their way.
Everyone has their own preferred method of escape from reality.  Mine (other than chocolate covered espresso beans) just happens to be movie theaters.  Where else can you go for 2 hours, escape to a world other than your own and temporarily forget your problems?  But I get ahead of myself.. I'd better start from today's beginning.

I had a fairly rough night last night .. not much sleep.  My entire right side of my body had decided to run another marathon of sensations and it felt electrically charged, but in a different way than in the past (during other MS attacks).  I'd love to describe it to you .. but it's something I cannot put words to.  The only thing I can describe is that my shin bone ached big time!  By morning, however, I was tired from not sleeping well and from all the nightmares involving pain (of course) and then realized that my left arm was numb to the touch as well.  This is a NEW symptom which I had never had before.  My left fingers previously were numb, but nothing else was wrong on the left side.    

Seven Zero Zero  .. that's what my son calls it.  It's the time the little kiddies are allowed out of bed.  If we didn't have that rule in place, I'm sure they'd be up with the birds at 4am!  No thank you.   So seven zero zero hit this morning and like it or not, another day had started.  Today is Sunday.  I had planned on going to church today.  I hadn't been since March due to the huge MS attack I had on April 1st.   It's been a rough few months.   So what was I going to do today?   I really really didn't want to go.  Physically I felt horrible, and emotionally:  completely drained.  I just wanted to crawl in a hole and die (okay maybe not literally, but it was tempting).   After much arguing within my being, I decided to drag myself out of bed and go with my family to church.  

Wow.. it was MUCH harder than I thought to actually be there.  As I sat there, and the people sang, I struggled within myself to try to join in. It didn't help that I didn't know any of the songs.  Not ONE song!   (How long had I been gone anyway?)  So, I just sat there, and held Julianna, trying my best to enter in.  I found myself looking at all the people there.. knowing that a lot of them had healthy bodies, and were able to do whatever they wanted.  There I was again, feeling sorry for myself.   It's something I struggle with so often -- envying the abilities of others.

I felt like a fragile vase, with hairline cracks all over it, just waiting for a single "tap" to set the complete breakdown in process.   Yes, and here it came.  Someone coming to ask me how I was.   I decided a long time ago to be honest with people when they asked me that question.  So instead of saying "fine" and holding it altogether, I decided to say, "really crappy", and there it was.  The waterworks flowed freely.   I again wondered why I had come.

Looking back, now I know why I had to go.   While I felt like a broken person, one that wanted to hide from everyone, I realized deep down that it is the connection with my fellow believers that really helps uplift me.   Their encouragement in the faith, their prayers and hugs -- the feeling that I'm not alone in this walk is what I needed today, and it's exactly what I received.  While I still didn't get any type of overwhelming feeling of His presence (I rarely do), I did feel that He sent people my way to pray for me and encourage me.  I left feeling not so alone, and a little stronger emotionally.

The afternoon was filled with other obligations that made the day fly by, which I think was good for me to keep my mind off myself.  It was then, just after dinner, that I thought it would be nice to take my son to see the movie "Prince of Persia: The Sands of Time".   What a great way to finish off my busy day -- a time when I can jump into another world and have a little break from my reality.   It's funny how the weakness that we have permeates into every aspect of our lives -- we try to escape it, or believe that we can overcome it, but it always seems to rear its ugly head when we least expect it.   I was fully expecting to leave the movie and feel relieved that I had just escaped for two hours, but rather, I found myself pulling the storyline of the movie into my own life.

In the movie, they have the ability to use the "sands of time" to go back and change history.  Ooooooh (I thought), wouldn't it be great to go back in my past, and find that "trigger" that started my MS?  I could change it .. I could stop it ..  If only .. 
And that's exactly my problem .. the "if only's".  I seem to be stuck there sometimes.   All the famous people that had difficult lives and were known to have amazing character (like Mother Theresa)  -- one thinks of their life situation as "romantic".  "How wonderful to be such a great person and live through such adversity".  But, once you are in that "character-building" adversity, it's not so glamorous.  I find myself fighting it all the way, pouting like a school girl as to why I cannot do this or do that, instead of focusing on God's purpose for this bumpy road I'm on.   Even tonight, I was talking to Kirk and in that conversation saying "what if this is the valley, and from here it only gets better".  I'm hoping so much (once again) that my health won't get any worse.  I guess that's why when it DOES get worse that I have such a hard time coping with it.  I still struggle so greatly with why the Lord would want to put me through so much.. at the detriment of my family (and believe me .. the worse I get, the more things and people in my life get strained).   Maybe I struggle with control, the control of wanting to know the future perhaps.  If I ONLY knew that I would get better tomorrow, I could do today.  But, I won't know.  My arguments go round and round.  When will I learn?

As I sat here typing this, I felt a pain in my right forearm, so I rubbed it, then noticing a small lump in the vein on top of my arm. Oh great, something new??  Who knows what that is, but I guess it's something else that needs to be checked.   I've heard of blood clots post-procedure in your neck, but can you get them in your arm?  Hmmmm 

My body continues to throb but I feel a bit more encouraged today.   What would we do without the encouragement of friends and family?  They play a greater role than they might think they do.    I am so glad that I pushed through my insecurities this morning to get to a place where I received prayer, encouragement and hope.  To everyone who takes the time to encourage and uplift others in need -- thank you .. you are a great blessing to others!
Don't feel like writing -- feeling like hiding.

The numbness in my right hand and from my foot to my right knee now encompasses my entire right side.  Becoming REALLY hard to hope that the "Liberation Treatment" that I experienced a few weeks ago is still in the healing stages.  How can I get so much worse, the worst I have been to date? Shouldn't I be getting better post-procedure?  It seems for me, that I continue to dive downward.

Very hard to fight being depressed.   I just wanted a normal life.  I wanted to run and jump with my kids.  It's a fight just to not cry.  

Please Lord, have mercy on me.
The pessimist within me is fighting so hard to take over.  But I know if I let it, then it's a downward spiral.  I realized last night that I have a few symptoms which are either new, or worsening.  This is not good news to me.   I see all over Facebook, people having the procedure done and starting their "new" lives, full of energy and life.   And I feel that mine is spiraling downward.  How does one cope with that?  How do you maintain a positive attitude when all you want to do is run and jump with your kids? It's probably a good idea to refrain from reading all those positive stories for awhile.

One thing that is new in my body is that I find I cannot sit in one position for very long.  The pressure on the heels of my feet is just too much to keep them in one spot.  If I cross my legs to give one heel some time off, then within a minute the legs will start to feel like they are numb.  So, I constantly change positions.  When my heels feel like there is just too much pressure on them, how do you change positions of your heels?  Very difficult to do as usually feet are on the floor!  Even in the shower this morning, with the tiled floor, I found standing on that uneven surface uncomfortable for my feet, BOTH feet.  Up until now, only numbness had been in my right foot (and leg).  Last night I was touching the top of my left foot, and it felt funny, almost as though desensitivity was starting, or numbness.  No.. not my left leg too!

While I haven't regained my limp back, I have found the last few days that my right leg has become much weaker, to the point that even walking feels like work. It's almost as if my bones don't want to lift my leg, almost like it's 300 lbs and just so hard to do.   I do it, just fine, but within me, it feels like so much work.   

Fear within me wells up.. (in the form of tears) and I PRAY that I'm not losing my legs... all I have wanted is to run and play with my kids.  I had hoped that this procedure would help me to do that again, like it has for so many.  Yet all these new and/or increased symptoms scream the opposite to me .. it taps me on the shoulder saying that my dream will not come true.

I so want to take one day at a time, to believe my body is healing.  Yet I'm so worn out.  I feel like my physical body has been through so much the last 20 years.  Emotionally, it's hard to keep plugging along. Yet, others seem to do just fine with adversity and maintain their positive attitude even if significantly disabled.  Perhaps I am just a whimp at heart.  Yet I don't think that wanting to be an active part of my family's life is a bad thing to dream of?  So much struggle, emotionally and physically.

Prayers are appreciated.  I am feeling defeated.  
I kept meaning to write yesterday, because if I don't write that's days happening on the same day, I tend to forget all that happened.  However, I'll try my best to recall yesterday.

I did get the results back from the blood work, and all levels were normal.  That was good news .. but why did I feel so tired for the past 5 days?   Yesterday I had a bit more energy, so I made a point of getting things done while I had the energy.  Perhaps I did too much again?  But if I did, then that means I'm doomed to a life of sitting around and really doing nothing.

However, once 7pm came, it was like I hit a brick wall.  I barely got the kids to bed before I collapsed in my own bed at 7:30pm.  It felt like I had just run a marathon, and my heart couldn't keep up.  I was so exhausted, all I could do was crash, except I wasn't really tired, just exhausted.  So, it was a long fitful sleep of alternating frustrating dreams and staring at the ceiling.

I watch people's blogs who have had the procedure done, and they talk about increased energy and a new life.   Honestly, the only thing I experience is the elimination of my limp (which is huge and I'm grateful for that), and warm hands (which seem to fluctuate).  On the energy level, there seems to be more days of exhaustion than of energy.  Why is this?  Does this mean that for me, the procedure didn't work?  Or perhaps another option could be that my body is working on healing itself which is why I feel so crappy, or maybe I will just have fluctuating days of good and bad while my body heals?  Either way, it is disheartening to once again be back in the world of being useless to my family.   The past week has been mostly "I'm too tired" to do anything with them, or for them.  This is NOT what I had hoped for.

But, what are my options?  I can either give up .. or keep waiting day by day for improvements.  That is hard to do when you feel so awful.   This morning when I got out of bed, I could still feel that off feeling that was sucking all the energy out of my body, but until I got up, there would be no way of really telling how I felt. 

I plugged along for the morning, as best I could with little energy, but oddly enough once noon hit, I hit that wall again.  It's an abrupt 'hit' where in mid sentence, you just need to sit down and you can barely finish your sentence, the fatigue is so huge.  I have people coming over tonight, so I wonder how it is that I am to clean this house and tidy it up?  It's in a bit of disrepair from my being in bed the past week. 

I will have to just plug along and hope that things will get better tomorrow.