As I sit here distracted by the pain in my body, I am trying to sort out the feelings tumbling around inside me.   Do I seek re-treatment? Will it help?  I must try.  What if it doesn't help?

With respect to re-treatment for CCSVI, I found a location closer to my home and have decided to choose that option, because it will save us a lot of money in doing so!  I'm sure New York is amazing this time of year (cold and snow), but I'll have to settle for Seattle's rain.

I have an appointment for my next angioplasty on January 7, 2011.  I think somewhere along the way I have lost a lot of my ability to hope for better health in my life, and faith that that it can happen. Yet, somewhere within me, there is something that wants to give it one more shot -- perhaps there is a little fight left in me.

For those of you who have supported us in the past, family and friends, we would greatly appreciate prayer during this time.  Prayer for safety and peace for our family, especially the children.

The cost of this procedure is $5,800 US, which I think is a really good price compared to other places.  Some of you have mentioned to me over the past year to let you know if I started fund raising again (should I do another procedure). Honestly, I don't think I will do active fund raising.  For those of you who know me well.. I have a hard time asking for help ;)         However, I wanted to respect those who had asked, and let them know that I was doing the procedure again.  The only problem is that I cannot remember who asked me about it!!  I am hoping that at least this way I will be able to contact those people that had asked to help!  :)    So, those who want to give towards our trip, please contact me through email or this blog.

For now, we appreciate your continued prayers for strength for our family as we walk this road.

My brother Merv, who is battling Parkinson's Disease, maintains a blog, which can be found at http://mervbest.blogspot.com

He writes:

Saturday, November 13, 2010

God is enough, right Dawna?

Me and sis making an early mess!

Suffering Christians share a comradeship much like that of those who've been wounded together in a great battle... like survivors of D Day... and, it's the only army in the world that one can serve with his kid sister! Hang in there Dawna, we are gonna "fight" this good fight together...


"When we are consciously aware of being used as broken bread and poured out wine, we have yet another level to reach - a level where all awareness of ourselves and what God is doing through us is completely eliminated. A saint is never consciously a saint - a saint is consciously dependent on God." Oswald Chambers, My Utmost for His Highest

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.

Well, it's been a month since that silly fall off my bike, and that day brought on the painful zapping/tingling in my feet and hands, which has not subsided even for a minute.  It often wakes me up at night -- I dream that I'm in pain and wake up realizing, that it's not just a dream, it IS my reality.

Yesterday I woke up feeling like I had the flu, took a Tylenol and waited for some relief.  When no relief came, I knew it was my MS targeting me once again.  I spent the entire day in bed with a heightened pain my body and extreme exhaustion.   Hoping for a better day today, I woke up today and realized that I wasn't better, but rather much worse.  With each breath that I take, the ache (now also in my chest) makes my chest feel like it has to lift  a heavy weight just to breathe.  Somehow I must continue with my day, taking my children to the places they need to go, and somehow function like a normal human does.

I must confess that with each passing week, as I continue to seem to worsen (especially over the past month), I think more and more about whether I should have the procedure redone.  I'm game to do it.. there is a huge issue of finances which blocks that thought.  Is it worth selling your home over?   Is it worth incurring more loans?  At this point my answer is a resounding YES!  This is not a life that I want to deal with every day -- the pain and the lack of function and ability to play with my kids.

My mom once asked me while in a hospital bed, to release her and allow her to die.  I couldn't believe that she had asked me that. .and I told her I couldn't do that.  Looking, back, I see that I was very selfish .. I did not want to lose my mom.  But I also now understand her side of things.  Living in pain day by day is very difficult and it makes you long for heaven, and the things of this world lose their sparkle.

I feel defeated and run down.  I pray that the Lord will grant me the strength to continue for another day, or I suppose I should be focusing right now on "minutes" instead of days.    With each aching breath that I take, I pray that the Lord grants me the ability to treat those around me with kindness and gentleness and to not get lost in self-pity.

As I lay here in bed, all I can say is WOW.. what  a glorious day!   I must admit, I was a bit skeptical this morning when I looked at the weather outside my window.  It looked mighty gray and stormy -- and after changing locations to peer out a different window (one without smudges and handprints from tiny hands), it still looked like we were in for some unpleasant weather!    We had booked today to go into Vancouver with some friends to cycle around Stanley Park for the day and end the time together with dinner downtown.

I was very excited!  Now that I have the energy to cycle, I couldn't wait to spent a day doing what I used to love to do as a teen!  But first, we had swim lessons for the kids .. and as we walked to the outdoor pool, it started to downpour rain, soaking us by the time we walked the 3 blocks to the pool.  Hmm... not very promising for a day full of cycling outdoors.   Once we were through shivering and hovering under the eaves of the pool building for the duration of the lessons, we rushed back home and packed rain gear for our day outing.  We hugged and kissed our kids and took off on our adventure.

By the time we got to Vancouver, the weather was MUCH better than at our house, so that was very encouraging.  I then changed in the truck from the jeans I was wearing back into shorts, and stuffed away all rain gear and sweaters.   What a GLORIOUS morning this was, cycling around the Sea Wall, and ending up at a beach, in the sunshine. We dismounted and just walked on the beach for a bit, looking at sea life and just enjoying the view of the ocean.  I, at this point, was still pinching myself that I was without kids and cycling with friends .. something I don't get to do often!

We decided to stop at the Ferguson Point Tea House for lunch .. only I decided to try more of an abrupt stop than the others.  We were crossing a road, and I attempted to lift the top of the bike up to jump the curb, but I misjudged how heavy Kirk's bike was, and didn't lift it high enough, causing my bike to stop and me to continue to fly forward .. only my leg somehow got caught in the bike so we tumbled together.  It must have looked pretty interesting, as I had some people rush to my aid and help me up. I actually couldn't get up because my leg was caught in the frame of the bike.  The interesting part is, it didn't even hurt!  I really do believe that I had lots of angels shielding my fall .. the only thing I thought was .. "oh crap.. I guess I'm going down now" .. and then it was.. but it was more like falling down if you trip and then you get back up.  I only have a few light (and I mean REALLY light) scrapes on my leg above my knee no bleeding) and a slight nick on my pinky finger.  Strange considering how we (my bike and I) tumbled. Gotta love those angels!

Following my graceful entrance to the restaurant property, we had  a nummy little pizza and we were off once again to enjoy the back trails of Stanley Park.  The day sailed by, and I swear we blinked and it was nearing 5pm .. where had the day gone?  Didn't we just start? I didn't want it to end!

We drove over to the restaurant where we were going to have dinner, the Stone Grill (I think it is called) .. and decided that since we had 40 minutes left before the restaurant opened at 5.. that we would take the bikes and ride a bit around.   Only a few minutes later, we came across a young boy on a bike, maybe 10 years old, that was near tears and said that he couldn't find his mom.   We assured him that we would stay with him until we found his mom.. and went back to the location where he last saw her.  Long story short, my friend  and I  left the guys with Andrew to go look for his mom.   We cycled for quite a ways west (as Andrew said his mom was jogging west).  He gave us her description, black capris and a pink shirt.  We looked and looked and couldn't imagine any mom being that far away from where she would have spotted her son missing by her side.   Finally, I saw a lady jogging towards us on our bikes, but her shirt was more of a white than a pink (I guess I had incorrectly assumed it would be dark pink).  She had headphones on and was jogging like she really wasn't concerned about anything, so I really thought this couldn't be her, but thought I should at least ask.  I spoke quite loudly to get her attention (as she had headphones on), asking her if she had a son named Andrew.  She looked at me and responded, "Yes."  I was quite surprised as I was expecting to find a distraught mother looking for her son.   I then told her how Andrew was very upset and unable to find her.  Her response to us was two words, "stupid kid" .. to which she just started jogging away from us, continuing to head east.   I just sat there looking at my friend in amazement.  Did I just hear that correctly? Did she just say what I thought she just said?  I asked my friend, "Uh.. does she not want to know where he is.. does she not CARE where he is?"   I turned my bike around and raced back to catch up with her.   I asked her in I'm sure a frustrated tone of voice, "Do you not even want to know WHERE your son is?"  I'm not even sure she stopped jogging while she asked "where is he" .. so we told her where he was and I said "we will be cycling up to where he is.. and waiting with him until you come to get him.. we won't leave him by himself".

We rode up to the guys, and waited for his mom to join him.  As she jogged up to where we were .. she looked very frustrated, stopped beside her son and spoke quickly and harshly to him in Italian (he had told us he had just moved here from Italy two months ago).   His mother looked at us rolling her eyes as if again to infer "stupid kid" and then rapped her kid twice on the head with her knuckles  .. not hard .. but enough to give him her "message".   She then just started jogging again, and left our location, and the boy stood there with his bike, completely deflated, hurt, abandoned and tears welling up in his eyes. I wanted to rush over there and hug him .. He needed a hug from him mom.  But all he got was anger and rejection.  As he quickly got on his bike to follow his mom who was already a block away, I quickly touched his shoulder as he drove past, and I cannot remember what I said, but I recall that I had wanted to give him a gentle, caring touch on his shoulder, and let him know he was a brave, strong boy, and that it would all be okay.


The four of just just stood there, our hearts broken for this little boy who only wanted to be loved and hugged by his mom, and received the complete opposite.  By this time it was 5pm and time for our dinner reservation. It was so hard for us to get into the mode of dinner, our spirits were all so heavy from this experience, and I just wanted to run after him and give him a big hug.

It was difficult to get into dinner, but we finally managed to focus enough to enjoy our experience, it was incredible.  They brought our steak out on a  hot stone.. and  it basically cooked as we ate it.. what an experience.. see it here:  http://www.stonegrillvancouver.com/stonegrill/stonegrillsteak30.html

After our nummy dinner, we drove over to a place for gelato, and I couldn't decide so I had both Chocolate Fudge AND blackberry cheesecake.  Ya, stuff normally on my NO NO list.. but hey.. this was my day off!  Wow.. what a great day.. the weather cooperated.. the food was great, the tumbles entertaining, yet the meeting with Andrew sobering.

So, it is on my heart now to continually pray for this Andrew .. whenever I think of him, I am praying for his spirit to be lifted, for his mom to gain compassion for her son, and for God to reveal himself to that family and heal that relationship.   I came home and hugged my kids over and over and over, and after I told them my story of Andrew, my little 7 year old Daniel Andrew Austin had tears in his eyes. My Daniel has such compassion for others, I knew that if I told him the story of Andrew, he would join me in the mission to pray for this little lost boy .. that someday he might know the Lord and find love, security and more hugs than he can imagine!   Andrew, wherever you are out there.. know that you are cared for, and that we are praying for you!

Thank you Lord for the blessing of great friendships, the immense gift of being able to cycle and experience your beauty in nature,  the protection for my body when I attempted to audition for Cirque du Soleil, the amazing food we were able to experience, and even for placing us in the right place and at the right time to show Andrew some care and love.   What a full day, I thank you greatly for these amazing memories and for the loving hugs that surround me each and every day.

Just a quick update since last week.  It's now been almost 7 days since that cold hit me square in the face!  Now that I'm feeling better, my numbness has subsided a bit (but still quite substantial compared to usual) and my energy is almost back to normal -- 'normal' being having no abnormal fatigue at all.  I managed to take the kids (with hubby) to the water slides for all day Saturday (Aug 14th) morning til 6:30pm  .. in the 35 degree weather with tons of energy to spare!

Moral of the story for me?   Avoid all people with colds.  This truly was my first experience of getting a cold and having a skyrocketing of MS symptoms coincide.   Not a very enjoyable feeling.  It's kind of like getting a cold and a flu together.  A 2 for 1 deal!

Started to jog again but feel I strained my knee again, so will have to back off and take it slower I guess - maybe do some cycling instead.  Summer is coming to a close, so quickly!  I think this is probably the first year where I'm not really happy to see it go.  My heat sensivity is less, so I'm able to enjoy the outdoors more.  I still am looking forward to Fall and Winter (and snow!), but the end of summer also means a LOT more work, with homeschooling and life just getting much busier.   Oh well, I have a few more weeks to prepare to pick up steam, and pray for continued health in the midst of it all to be able to accomplish all that will be on my agenda.

Sorry for such a boring entry, but I need to log the changes in my symptoms so I have a record of it. :)

My question to other MSers is this:  Do you find that onsets of colds and/or flus bring on ms symptoms?

It's been a pretty good week.    After figuring out I needed more calcium and magnesium, I got rid of some insomnia I had for a few days.  I've started jogging again, only minimally to start things off slow.  One minute walk, and one minute jog.. alternating for about 30-35 minutes.   Next week I will make it one minute walk, and then 2 minute jog, one minute walk, 2 minute jog .. and again increase the jogging the following week to 3.   So VERY exciting for me .. it makes me feel ALIVE!  My numbness in my right side is still very strong, and my left side seems to even be increasing in numbness, which has me scratching my head.   I think I am being impatient.  My right foot is SO much better -- better than it has been in years. It is still numb, but no longer to the point of pain or discomfort. 

One part of me wonders if I need to do the procedure again. I hear of people who have had it done and their numbness completely goes away.  This makes me think, that since my azygos vein was missed completely during my procedure, I wonder if that is why I am slowing improving on some things, but in others, I seem to continue to decline (i.e. numbness on my left side).  I keep hearing about places in the US opening up .. and even ones within a few hours drive of my home. This is MUCH more appealing that flying 12+ hours to a foreign country. This would mean my entire family  (i.e. hubby & my kids) could come for the procedure.   Well, at least this is a hopeful option should I choose to do this procedure again.  However, because I am feeling so good energy wise and with the right foot feeling better, I feel I have the luxury of waiting to see if they continue to improve.  If I don't have to look into another procedure, it certainly would be helpful to my family financially!

Anyhow, just a short update on my improvements.

• Bladder isn't bothering me much .. it's just a background slight feeling, if I think about it.
• Numbness isn't causing pain as it was in the previous month, although still quite severe in my hands and sometimes my face and scalp.
• Energy level is superb. 
• Sleep is back to normal
• Memory?  Still not that great
• Heat tolerance .. MUCH improved. I can stay in the sun for quite a while without my energy draining. My friend even asked if I was feeling okay when I  said today, "I'm going to sit in the sun instead of the shade" (I'm well known for HATING summer and craving snow and winter)
• Still no sign of my limp coming back (YEAH!)

While I still struggle with the circumstances of the past year and fears of what the future might hold for me,  part of me wants to scream with joy because of the opportunity given me to experience life --- right now, with my kids and even being able to physically exercise (something I've SO greatly missed this past year).  I feel blessed to have been given so much and cherish each moment, of each day.  Thank you Lord for the gifts you have given to me this day.  I pray that you allow this healing to continue!

July 31, 2010 My son (Jordan) & I cycling in Vancouver prior to the fireworks.

Well.. it's been another week, and must say that things are still improving. I haven't had fatigue in a month or more. I have felt the strength of my muscles improve.  Is it really possible that I could still be seeing improvements from the procedure in Poland?   Does it realy take that long?  Or, perhaps is my body just finally settling down from all the attacks I've had in the past year?  I'm wanting to believe the first!

My right foot, which is where the symptoms first started, is actually less numb than it's been in a year!  It's wonderful to be able to wear shoes again with them being very uncomfortable and constantly in pain. I have no pain there anymore, and only slight numbness. My right leg hasn't changed much though, and so wanting to believe it's like a garden hose.  you turn the water on, and it goes from the source of water all the way to the end of the hose, and sometimes this can take quite some time to reach the end.  Perhaps, in the start of my healing process, much like the flow of a hose, it is starting at the beginning of my original symptoms, my right foot.  Perhaps it will move from there, up my leg and I'll continue to see healing of the numbness over time.  At least that is my hope!


I actually jogged around our lake this morning, albeit it was a walk, then jog, then walk, etc. but it felt AMAZING to feel like I was LIVING again!  We'll see how my body treats me tomorrow, but I just couldn't help myself, as my fast walk turned into the jog.  I used to love to jog.  As a teen, I would exercise often, and HARD .. it's just part of who I am. 110% or nothing -- all the way.

Julianna's Turtle Friend

On our way around the lake, little Julianna said "there's a turtle".  I didn't respond because I thought she was being silly.  But yes, there was a turtle!  What a beautiful walk filled with God's amazing creatures (can live without the Can. Geese and their lovely droppings though).  Even saw an eagle on the way too.

It's been a challenge to lay around so much the past year. I can only pray this is the start of something great, and not just a short season of health.  I will continue to pray in that direction!

It feels great to play with my kids, run around with them, and be the mom that my heart wants to be -- and now my body will let me!

Well, it's been 9 days since the start of my prednisone treatment, and 5 days since its end.  I must say IV prednisone is MUCH better than in the pill form, the latter giving a ton of side effects while the IV version seems to have minimal.  I only had a little bit of fatigue and nausea with the IV version.   My facial numbness seemed to dissipate within days of taking the prednisone, but now (as of yesterday) the numbness has returned as well as the tingling and some pain in my left facial area.  I really wish I had the answers as to why.    I struggle with the two options of (a) attempting to re-do the procedure again (this time in the U.S.), and (b) going on Copaxone or another MS drug.  I can't quite convince my neurologist that the procedure has helped, when I continue to get these attacks.  Part of me wants to believe it's a process that may take awhile, but why do the symptoms keep getting worse?  Again, I don't have the answers.

My energy level is still very very good -- if I didn't have the numbness and pain, I would never know I had MS.  So that is  a VERY VERY encouraging blessing.  All I can continue to do is make the best choices for my health in relation to diet and exercise and pray that I continue to improve.  I'm pretty sure that within a few months if things don't improve, that I will be seeking out treatment again.  In the back of my mind, I wonder if there were some missed blockages, which may explain why I am partially, but not completely better.  Again, only God knows.

I still struggle greatly with the baby issue.  I really have no idea why.  I should be happy and content with what I have, and where I am in life; yet that is one hurt that doesn't seem to be healing, and that baffles me.     All I can do is pray that the Lord fills that hole.

Still constantly praying and hurting for my brother who has Parkinsons Disease.  He is having a very difficult period right now, and I just wish I could take it all away from him.  My life with MS is a walk in the park compared to what he deals with every day.  He is such an inspiration to me.

Many have asked me lately how I can do the MS thing with 4 kids, the youngest just turned 3.   Without them, this walk would be MUCH more difficult.  Sure, it's hard to keep that busy, but if I was not busy, I think it would be much too easy to feel sorry for myself and lay around, doing nothing.  So, these kids are life-savers (and cute ones at that!)

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)

• 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.

• Limp is still gone
• hands still fluctuate between cold and warm

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!

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.

Fluctuating symptoms

As I sit here, an icy cold creeps up my right arm once again.  I am resolved to wait this out and chart what each day brings.  Today has been a much better day, physically, than yesterday.  I have only had a few bouts of cold arms -- the duration of the cold being much shorter and less severe than yesterday's.  I will take this as progress.

My devotional for today says this, which I find encouraging:

May today remind you that God has given you a fresh start, a new hope, and a heart filled with reasons to be thankful.

I have received feedback from other MS sufferers on this "up and down" of symptoms, and many have reported this happening to them post-procedure.  When writing to the clinic, asking if it is common to get better and worse, back and forth .. this was the response:

Doctors say you need to observe the symptoms for a longer period of time as organism needs to adapt.

So, not exactly the answer I was looking for, but all answers seem to point to one thing -- "wait".

My energy level is a bit higher today, and although my right arm still feels weak, overall I accomplished more than I have in months.   My problem with feeling better, however, is that I feel like I must do just that -- accomplish all that hasn't been accomplished in the past few months, and I tend to over do things.  So, REST is a great challenge for me.  Perhaps I should take off to Hawaii and rest for a month .. if only I could get a prescription from the doctor for that.

Insecurities

I had pondered earlier if MS sufferers (like me) ever feel like they are a drain on all the caregivers around them. Today was a good day for me .. someone that came over to visit me (with the intention of encouraging me) told me that they left feeling encouraged by me.  That was a good feeling -- to be able to somehow give to someone else, instead of that feeling that I am constantly taking from others.

CCSVI Treatment Locations

Today, I read of people being treated within the USA for CCSVI, and part of me felt sad that I couldn't be a part of that group -- how wonderful it would be to be treated in North America .. something more financially feasible and so much easier on your family!  Going to Europe not only means HUGE expense (flights, treatment, hotels, etc.) but also a long time away from your little children.  But, as I'm realizing, this whole uncharted area is filled with unanswered questions and the unknown.  So for me to question my decision to go to Poland, wondering if I should have waited and tried to get into the US .. it's something that I just can't allow myself to do.

Medical Follow-up

With respect to my low white blood cell count, my doctor sent me for blood work today to check my thyroid levels, as a first level of testing.  He didn't seem too worried about it. 

Inclined Bed Therapy

My next step is to try to refit our bed for inclined bed therapy.  I hear many others are being helped by this treatment .. and I want to try it for myself.  And as a bonus, I hear it even stops husbands from snoring!  That alone would be worth it :)

An interesting study that someone posted on what it's like for veins without the inclined bed therapy ... it's a little long but so interesting to see the tubing stress and constriction:   Silicon Tube Stenosis CCSVI Experiment 

Friends and Blessings 

In the past month, friends and family have provided meals and held fundraisers in order to help with the financial burden of this medical venture.   It has all been such a blessing to us .. and I'm not sure how we can ever really express our gratitude for all the help that so many provided.   Part of me feels like I need to have a successful story so that people will feel like they gave to a good cause, but I know that I really have no role in the success of this procedure in my case.  All I can do is to take care of my body, rest and recover.   Thank you all -- your generosity has so greatly touched our hearts!