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.


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! 
Wow.. what a disheartening couple of days.   Yesterday I woke up so completely exhausted, that I stayed in bed the entire day, most of it not even being able to open my eyes.  A little difficult when you have to make sure your children are fed and not getting into trouble!  The feeling I was having in my body, I would liken to if someone was hiding behind a door when you walked by, they jumped out to scare you and your entire body just electrified.  That's kind of what my body is feeling .. a strange startled feeling, but it doesn't go away, and it is completely draining of all energy!

I have noticed over the past few days an increase in the fluctuation of my cold / warm hands.  But they had still, at that point, been more warm than cold.

Today, when I woke, I found that while still having some of that really weird feeling flowing through my body, I was able to get up and not crash in exhaustion. I was glad that maybe I was starting the upward climb to normalcy again.  However, I noticed that my arm was very weak, and a bit achy .. much like it had been in previous MS attacks.  Could this past few days of exhaustion and now the weak arm be an MS attack?

A few hours ago my right arm also started to show other signs of issues.  My right hand has been numb for a long time now, maybe over a year.   I noticed that the numbness started to climb up my arm, towards my elbow, and then it started to get cold.  But this time, it got so cold that it felt like my arm was burning -- like I was holding my arm in a bucket of ice. This cold burning (and weak) feeling lasted a few hours until it finally flooded over with a warm feeling and my hands became warm again.  Finally, I thought, this warm feeling is much more comfortable than the ice one!  However, this was not to last and once again (after a few hours of warmth) my arm became cold again and it still is cold (it's been cold now for almost an hour). 

What does this all mean?

  • Does this mean that I have restenosed?
  • Is it possible to still have open veins, but have an MS attack?
  • Can you have poor circulation times like I am having now, but still have open veins and it is just all part of the healing process?
I wish someone had answers to my questions .. tips on what to expect post-procedure.  I wish I could feel confident that I'm still on the right track and that I haven't ended up where I started -- blocked and on the road to increased disease.

Your emotions are quite busy throughout all of this, your imagination on an unsupervised thinking spree.  So many thoughts race through your mind all day long, especially when your body is exhibiting different feelings that you believe shouldn't be there.   For example, I wonder how many MS patients feel guilt for having to be taken care of?   Do they feel guilty for being a constant burden on others?  I have felt that lately.   Maybe it's a symptom of feeling sorry for oneself ... I don't know.  But I know that I just wish there was one day where I could be the caregiver (without disease) and give for once instead of constantly taking.  But I know that cannot be at this moment in time.  But it is hard to feel like you are a drain on others and you fear 'at what point will people not want to be around me' because you have taken too much.

This is such a road of the unknown, it can drive one crazy with the "what if's" and the not knowing what is truly happening in your body.   I just pray that throughout this I can remain strong in faith and trust that God has me in His hands, because on my own, I cannot walk this road.

Well, it's been a pretty rough last few days. Well, I guess in the scheme of things, not too rough, compared to having an MS attack, but still not what I had expected. Two nights ago, when I went to bed, I wasn't feeling very well -- kinda light-headed and overall a feeling of oddity. (My husband would argue that that is just who I am .. odd). It was almost as though I was getting a flu, but it was different, an achy type of feeling but more like it was achy in my blood, an ache flowing through my body rather than in my joints.

Yesterday, I just stayed in my PJ's and did what I needed to do to parent the three little ones. I felt okay during the day, but enough that I needed to sit and rest the day through. But by late afternoon, I started to feel weaker and more "off". I asked my hubby to bring dinner to me in bed, as I just didn't think I had the energy to get up with the rest of the family for dinner. I went to bed early and hoped for a better day. Unfortunately, it was a restless sleep and by 3am I figured it was time for me to get this checked. I had no idea if my angioplasty was causing issues in my body, infections or complications. In the Polish clinic, I received no list of possible complications or what to do expect post-procedure nor lists of what to do or not do, etc. So I truly was on my own. I decided the fastest possible way to sort out how I was feeling was to go to Emergency and get all tests done at one time. If you go to your doctor, all "answers" will take much longer as you then go for tests and then back to your doctor for the results.

At 3am, the hospital emergency department (in theory) should be less busy. Besides, I wasn't sleeping anyway and this way I could possibly get back home before my husband would have to leave for work. I couldn't see myself bringing my three little kids to the hospital with me for hours.

It was a bit of a wait at the hospital, however, so my theory of being quick was short-lived. I guess it could have been worse, however. I did end up getting out by 8:30am. The long story short is this: They did blood tests, tested my urine for blood, and did a good physical check for any complications post-angioplasty. Of course, the doctor was NOT impressed that I would have done such a "risky" procedure. He had never heard of CCSVI and was visibly shocked by the concept of it and at one point shook his head in dismay at my decision. He asked if my neurologist was on board (which mine is). Not sure if he believed me on that one. He proceeded to tell me of all the complications that could happen. When he turned away for a minute, the nurse whispered to me, "Good for you for taking your health into your own hands!" At least someone was on my side!

In his checkup of my body, he lifted my shirt to check my stomach and looked a little shocked at all the puncture wounds and bruises. "Oh", I said "I forgot to tell you that I'm taking heparin every day for a total of 7 doses, and today is my last day". He then proceeded to tell me (with a slight giggle), "that" type of information is slightly crucial for him to know. Oops! Chalk one up for my good memory. As it stands, I've gained a few small lumps at the incision site, and I was going to ask about those too but completely forgot to ask! Oops again!

It took hours to wait for the blood tests. When the doctor came back, he said everything was fine except that it showed Leukopenia..a low white blood count. He didn't offer any explanation for it, other than that I should get it checked with my doctor next week with more blood tests to monitor it. Never a dull moment in my body! I did a little bit of research and it looks like there might be some connection with taking prednisone and exhibiting leukopenia, but that's just my uneducated opinion. (http://www.ehealthme.com/ds/prednisone/leukopenia)

He discharged me and I asked if they would be willing to give me my last heparin shot, explaining what a whimp I was with needles and how it would save my sister a trip to my house to administer it. He called a nurse over to do that for me. She took one look at the needle and said "Oh .. I hate those .. those are really dull". Apparently they use different needles in Canada and the ones given in Poland are quite dull. So, being told I had "tough skin" by all the people who injected me with those perhaps means that it was just the needle type, and not me! But Hallelujah.. I'm DONE with needles!!

So I left the hospital for home and of course had to bring a Starbucks STRONG coffee home for my hubby (there is a Starbucks in the lobby of our brand new hospital). So here I sit, still exhausted, and need to figure out a way to get energy for tonight, when my son is graduating in his cap and gown. Let's hope I can do it!

I mainly want people to know that this procedure isn't just a walk in the park, but I still think it is worth it. I am glad that I took this gamble at a life with increased ability. It's hard to not be disheartened when things like this cross your path, but I will press onward -- for my husband and my kids.

  • My hands are warm again. It was just two days ago where they fluctuated back and forth between cold and warm. Not sure why that is? 
  • I still don't have a limp, however my right knee (which was the problem when I was limping) does feel very weak today.  I must say, however, that I cannot see how my leg would not be weak as I haven't exercised in months and my muscle strength in my legs is very poor.  I think that with the weakness I feel the past few days that it would also translate to weakness in my knees.  But, I still am not limping.
  • Other people have mentioned color in my face.  I do not see it, but that's probably because I'm focusing on those stupid wrinkles which seem to pop up every day.  I highly recommend staying in your 30s!  :)
  • My legs, and especially my feet have been very hot feeling the past few days.  I am not sure if that means there is increased blood flow or what it is.  It is a different feeling than the burning tingling or zapping feeling of the MS attacks.
  • Still no improvement on my nasty bladder issues (always feel like I have to go, even though I don't) nor on the numbness in my right side and both hands.  Really hoping for improvement on those.
  • Brain fog?  That's a subjective issue which is hard to say if it is better or not. One would think that (while in the hospital) forgetting to mention the lumps at the procedure site would suggest that perhaps I still have brain fog.
I wish I could just go back to bed, but my little ones are calling.   What a blessing they are to me.  They keep me outward focused and stop me from feeling sorry for myself :)   How can one be depressed or sad when this smile constantly surrounds you with hugs and kisses?

I'm in love .. after a few days of what I used to consider "strong Canadian coffee" (which now seems like water to me), I have found my European replacement .. Starbucks cappuccino with two shots of espresso.  Certainly not good for me, but definitely a means to which I can wean myself off of coffee (once again) so I don't have to deal with too heavy a withdrawal!  

What gives people the strength to maintain a positive outlook on life?  I've met many people, that regardless of what life throws their way, their response is always positive.  I've always struggled with fear, not in the neurotic sense, but in the underlying whispers that tell me that things won't turn out okay.  I greatly struggled with fear of "what could happen" when my boys were in the hospital with e.coli, when I was diagnosed with MS, and generally any other time when disasters seem to strike our family.   I find it very difficult to keep my mind from wandering to the "what could be" in the tomorrow.  Staying in the moment is preferable, because often I feel that what is in my future will not be palatable.  After all, this walk that I have had in this life has not been an easy one.   I have learned that I really do not want to know what is around the corner, because it tends to be something character stretching (and right now, I think I want to stop working on my character, thank you!).  But in all seriousness, I still struggle with the letting go of my control of my future, and letting God lead me -- wherever the road is heading.  Easy to do in the romantic idea of faith, but not so easy to walk.

Today, I feel that I have a little more energy, so that is a bonus, but on the other side of things, my hands are becoming cold again.  What?  Weren't they really warm for the past 4 days?  Immediately my insecurity whispers to me that my health is failing again and that any gains were short lived.  Oh I pray for healing .. for a normal physical life.  I watch people as I go through my daily living, and see people jogging, or doing things that I am unable to do, and I wonder if they realize how blessed they are to have abilities that they may take for granted.  I sometimes feel like I'm in a fish bowl, with my hands and nose to the glass, watching the outside world and wishing I could stop being a fish, and become a person on the outside that can do so many things.

Taking one day at a time and being content with today -- definitely a process of learning.  So as I sit here, I have a strange feeling in my left hand, like a cramping in my fingers, twitching in my left shoulder and both hands are quite cold.  How does one choose to say "it's okay" and move on?    Obviously I cannot see tomorrow, so I don't know what all this means.  Secretly I had hoped for greater improvements and quicker.   So I just pray that things will improve and that God will show his favor and allow my body to heal, as others seem to have done with this procedure.   I pray for grace to be faithful to following where He leads and to gain a disposition of gratefulness, thankfulness and integrity -- no matter what my road.

And yet another song from Decyfer Down on this topic of fear and trust ... I find strength rising within me as I listen to it.  (Again, apologies to those who don't prefer heavier type of music.. )

I'll Breathe For You

Ten thousand miles from home,
And still I know that you're right here with me,
They say,
I must deny the truth, if I want to live
But I won't turn from you

Until I live my final day,
I'll speak your name
I won't be afraid,
Until I draw my final breath,
I'll breathe for you,
I'll breathe for you!

I know, you have called me here,
But I can feel the fear, rising in me
You give me strength,
To stand when I'm alone,
When I'm far away from all I've ever known,
I'm following you


I'll breathe for you

(Chorus 2x)

I'll, I will breathe for you!
Wow, such a pleasure to be home, but part of me greatly misses Poland. It became like a second home to me, probably due to of all the friendships that developed there.

I am noticing some things today which scream the word "WITHDRAWAL" to me.  Let me list some of them.

  • My husband was so kind as to bring me coffee this morning in bed.  We slept from 7:30pm last night (arrived home at 6:30pm from the airport) until 6:30am this morning. WOW it was good to sleep.  I was so looking forward to coffee. Upon first sip I thought .. this tastes like water!  It was the usual coffee he made (which is considered strong to some who live here), but now, it wasn't strong, it was (to me) watered down. Oh no, I thought ... I'm in trouble. Where will I buy strong coffee like that? (Maybe I should go back? hehehe)
  • Later in the morning I found myself walking upstairs in my bedroom and instantly had the smell of the coffee I would drink each morning in Poland .. it had a particular smell that I've never smelled over here.  Obviously, my body is going through cravings.... time to go check out the prices of flights...
  • I find myself wondering if I should call a girlfriend or two, under the excuse of "you probably want to hear how my trip went .. maybe we should meet for coffee?".   Wow.. talk about addicted!  
I also noticed how much jet lag is affecting me today.  I attempted to braid my daughter's hair today and when I was done, it looked like she had slept on it for two days.  Hmm...  must try more coffee.

My sister just came by to give me my low-dose heparin shot.  Honestly, the 'thought' of it alone makes me want to run away like a little school girl.  I am such a whimp when it comes to needles and anything relating to blood .. well, when it deals with my body, that is.   I still remember Ron saying to me "it's no big deal".    Spoken like a true doctor.  :)

It's after lunch now, Julianna is down for her nap and I'm thinking that's a GREAT idea.. after all, it's midnight in Poland.. shouldn't I be in bed?  I hear it calling me.  Well, it's either the bed that's calling or it's coffee. I can't quite tell who is calling me the loudest.  I think they both might win.

I was going to take the kids to the waterpark as it was sunny this morning, but now as I look outside, it's raining. Hmm.. it really does feel like Poland (it was raining SO much there).   You know, I feel really off today, and I am blaming it all on the jet lag and coffee withdrawal.  I am hoping that is all it is and that I will feel energetic again.  I felt really good 2 days post-procedure, so I really am hoping that feeling comes back with some sleep and extra days to recover.  I don't know if heparin makes you feel crappy or anything either.  I only have 3 more days of shots to do. That will be nice to be finished with that. 

I was talking with a friend today and she asked how my pain in my leg was.   I had forgotten about that.  On April 1st (2010) with my big attack, I had intense pain in my leg and even touching my leg would make me hit the ceiling.  After the high-dose prednisone treatment a few weeks later, it got much better, but still was not pleasant to touch and I had a bit of pain in my foot, etc.  After her mentioning that today, I thought I would take a stab at shaving my legs during my morning shower today.  Earlier, shaving my right leg was more along the lines of a torture technique and was to be avoided unless completely necessary!   Well, after some subjective contemplation, I reluctantly say that I think it is better.  But the question is: is it better because of the Liberation Treatment, or because of the effects of the prednisone?  I am not sure I can answer that honestly.  Because it still does bother me to shave the leg, this shows me that I still have a lot of numbness and issues with that right leg.  But it is definitely better than it was last month.  I want to hope that it will get better and that the numbness will decrease, but again, it's a waiting game.  You hear so many stories of people who are so much better and their numbness goes away.  I can hope for this, but I also need to be realistic for myself so that I do not get disappointed if that does not happen.  Bottom line?  It's worth getting the procedure done even for minimal benefits .. the fact that I have increased blood flow, warm hands, etc. can only be good for your system.   If I were in the same place I was two weeks ago, I would still rush to where I could get it done .. and ASAP!

Well, I see that we have a lot of bills that arrived during my absence, so I guess I'd better get to paying those off.  Many of the people we have talked to have been financially comfortable enough to afford this trip to Poland for the procedure.  For us, it's been a financial struggle to complete this journey, and definitely a decision we did not make lightly.  Getting a loan from the bank to do this procedure and trip was not palatable, but really, what are our options?   If we take the chance to stay home and not get treated, you can guarantee that the health costs for an ailing body is going to be financially a burden as well.  So for all those out there who are wrestling with the dilemma of whether or not to take this step due to finances... know that there are others out there who have taken that mortgage, line of credit, or loan, and on the other end of it, are happy with their decision, even though it will affect them financially for years to come :)   I'd much rather have financial stress than physical stress.  It's unfortunate that any of us even have to make this a financial venture .. but hopefully someday soon, Canada will let MSP cover this procedure.. that will be a glorious day!
Wow.. hard to believe we are finally home. Our flight was almost 2 hours late in departure! We sat there for such a long time on the tarmac, and finally found out that we were waiting for the food to be delivered to the airplane. Waiting wasn't an issue for us, but it was for people who had connections. Finally after an hour the pilot came on the intercom, apologizing for the delay. He then stated that a passenger, distressed with the delay, no longer wanted to fly on the plane and they had to let him off and also find his luggage and remove the luggage as well. Well.. here we sat for almost another hour!
(Gosh, we look tired before we even started this leg of the trip .. oh wait.. we got up at 3am and now it was already 3pm .. that explains it.)

The flight was long, and as is normal for me, every time there was turbulence I was compelled by some unseen force to open the window shudder to see the landscape of the place I was going to crash on. Hmm.. the first place that this happened was over the arctic circle.

NOT a good place to land I thought. Please don't crash here! Of course, all was well, but I was already planning how I was going to survive in such a inhospitable climate (the temperature outside at this point was -75 F).  The second time we had turbulance was over this area:
Hmm.. still not the greatest chance of survival, I thought.   I really am not a good flyer.  It was good that they had onboard movies to keep myself occupied.  Food helps too (and COFFEE!!), however the food on Lufthansa this time around was pretty meager. They must have thought I needed to lose some weight or something. Let's compare meals between Air Canada and Lufthansa.  Okay, here is the Lufthansa meal on the last leg home:
Pretty teeny huh?  The butter looks like it's going to cry because it's missing the rest of what should be on the plate.  Actually the butter looks almost bigger than the meal itself! 

Here are the meals on Air Canada .. and these were all on ONE flight.. I thought I was going to burst they fed us so much.. almost every few hours meals came.. it was unreal!  Air Canada is definitely my favorite now:

This was the dinner on Air Canada.. a TON of food and the steak was actually pretty good!

Num .. breakfast on Air Canada .. the fruit was amazing, the little jam for the croissant absolutely delish .. and the eggs, sausage and potatoes scrumptious.  Did I mention the coffee? (yes, you get the picture)

And believe it or not, this was a snack on Air Canada .. salmon and rye bread with a really funky salad and roll.

Okay, now I'm hungry .. snap out of it and back away from food.  The flight went pretty well, once I got out of my neurotic tendencies to plan my escape routes once the plane would crash.   It was sunny in Vancouver which made for a pictoral landing.  It really is beautiful, but you know?  There's something about Europe that is just so much classier than where we are (North America).  We just don't have the beautiful architecture that they do.

I felt sorry for all those people who had missed their connecting flights.  We had chosen to pack light and take only carry on luggage, so leaving the airport was quick and without difficulty.  I took a photo of our plane for the kids.

It was so nice to get back home.  At 6:30pm as we drove up our street.. everyone was outside on the driveway, waiting for us.  As soon as we opened the door, the kids piled in, practically strangling me!  It was wonderful.  We unpacked a bit, caught up with the family and put the kids to bed shortly after 7pm. We only managed to stay up until 7:30pm .. it was just too difficult to stay awake any longer.  We had been up for approximately 24 hours at this point with only an hour and a bit of sleep.  I hadn't slept well in weeks. The week prior to the procedure, there was just so much on my mind to coordinate this large trip with our travel requirements and getting things ready for the grandparents to babysit.  Once over in Poland, the jet lag mixed with recovery, being in a strange bed, etc. just makes for little sleep.  On the plane?  Ya, I don't really sleep well.  Every time I would fall asleep the seat belt sign would come on because of light turbulence, waking me up. At times I think it actually WAITED for me to fall asleep.  So, once 7:30pm hit  and we hit the pillow, the world ended to me, until my son woke up at 11pm screaming from a nightmare. My husband thought it was in the middle of the night, not 11pm!  We were soooo tired.  I fell asleep shortly thereafter and slept right until 6:30am when my husband woke me up, banging things in the kitchen.  I honestly think I would have slept for hours more. I don't recall ever sleeping 11 hours before .. it was wonderful!  I'm sure it won't happen too often. I usually only get 6-8 hours sleep each night, and usually it's broken sleep. So it will be interesting to see if my sleep gets better post-procedure.
We got up EARRRRRLY at 3am this morning, but it really didn't matter as I didn't sleep much last night.  Probably because I knew I was getting up early at 3am.  I tried to get Kirk to give me the shot this morning in our hotel, but that was a disaster, as I think he probably didn't push hard enough and was making me have experience pain for breakfast, rather than successfully giving me my morning dose.  It's not his fault.  I would have no idea how hard to push a needle to insert into someone's skin.  I shudder just thinking about it.   We packed up our gear.. and said goodbye to the gorgeous view from our room.
We met up in the lobby with a couple of other people heading back to Vancouver today.  We are all on the same two flights back to BC.   I asked if she could give me my shot.  I can't remember if she said she had never given anyone a shot before, but I do know that she had done it for herself.  She also had difficulty with me, saying that my skin was tough! hehehe .. so I bled a bit but I wasn't as scared as with Kirk.  I think that's just the way it goes with spouses.

I have felt pretty tired and weak the last few days, so I'm not quite sure what the cause of that is, but I have a few ideas:
  1. Our 8 hour journey into Krakow, which included 4 hours of walking! (Which I haven't done in MONTHS!)
  2. The copious amounts of coffee (and it's strong espresso here) I drink each morning for breakfast.  As Gerhard told me, when you go and socialize, you must drink (and smoke) the entire time.. it's what creates the atmosphere of socialization and fellowship.  I have to agree with that wholeheartedly (minus the smoking hehe)
  3. Lack of sleep at night.  Most of us keep waking up at 3am .. guess we never have adjusted to being 9 hours ahead of BC time.
  4. My body possibly adjusting to the procedure

The ride to the Katowice airport was uneventful .. and dark.  We basically watched the sunrise, well, we could have, if it wasn't cloudy again.  As always, it was a pleasure to have Chris drive us.  It was surprising how many cars were on the road at 4am. 

Once there we had to wait until 6:20am for our flight to leave and it once onboard, a nummy breakfast was given to us (and yes, more coffee!).  
The flight from Katowice to Frankfurt was very smooth and quick (about an hour and a half) which sunny skies, much of what we did NOT see in Katowice.  It was raining for most of our stay there during the past week.  We had a 6 hour layover in Frankfurt which I was NOT looking forward to.  When we had our 10 hour layover in Frankfurt last week, I thought I would die of boredom.  We did take a train into Mainz, which was lovely, but because I wasn't able to walk very long, we only could stay out a few hours.  We checked into our gated area and at that point realized that there were no shops, no coffee places or anything to do in our gated area.  It was a little secluded area, unlike most other gates.  So, we were stuck there unless we wanted to go through customs again, which we did not. So we counted dots on ceilings, people watched and generally contemplated going crazy for about 6 hours.   This time around, our gate is in a larger area, with lots of shops, internet access (YEAHHHH!!!!) and food, views of planes, and much more to do.  I feel SO much better about this layover!  Kirk and I went out of the airport for awhile, shopping and bought Jordan a birthday present!  I'm really excited about that one.  It is from Frankfurt .. so he will love it just because of that!   Got other stuff for the kids and some earrings for me (I haven't bought earrings in 15 years!).  Ya, pretty pathetic, I know.   Went to Starbucks and wanted to get an iced frap to cool off (it's HOT here, unlike Katowice), and then went outside for a little sun.
As if I needed that sugar rush!  Probably part of the reason why I feel so exhausted.  Walking through the airport, even though I'm tired, I still am not limping.  It's an answer to prayer.  My hands are still so warm that they feel like I have gloves on.  I haven't experienced that in years!  I don't really notice any other improvements, but the neurologist did say it can take months.. so I'm just trying to be positive and patient.

I was talking to another patient yesterday, one similar to my level of symptoms, and I asked him if he found it difficult to be around people who were more disabled than he.  He said yes, and I told him it was difficult for me too.  I met so many wonderful people this trip .. friends I'm sure will last forever.  However, it was very difficult for me to see their disability, because it provoked fear in me that I will someday be there.. in the same spot they are in.  It's a trust in the Lord that I still struggle with. Will He protect me from that? Or call me to that?  I know what I want for myself, but it's the death to self which I find so difficult.  One thing, however, is that the people who were in wheelchairs on this trip, had such positive attitudes about life .. I have a lot to learn from them!  I can only take one day at a time, and I pray that I can resist the temptation to open the door to fear.  It knocks loudly, and I struggle with that door 24/7.

I really enjoyed walking through the airport this time. With energy to walk, I found it a great adventure to explore.  I think it made Kirk a little stressed however.  He doesn't like the open-endedness of not knowing where you are going .. I, on the other hand, find it quite exciting to explore new places!  Here are a few interesting things I found in my travel of this international airport.  Apparently, in one sign no people are allowed to enter if they do not possess arms or legs? (ha ha):
Oddly enough, you walk through the airport and when you look up to the ceiling, you see these billboards, and I honestly thought these were real guys hanging off the billboards! Again, my senses were probably not clear as it was hours since my last European coffee intake!
I couldn't get over the bizarre shopping carts in this little pharmacy!    And of course, all over Germany you see this sign:
We asked someone what it meant and they said that in case of emergency, this was the way to safely exit the area.  Odd,  however, as in the train station,  it pointed to the train tracks (which would mean that in case a train wasn't there at the time, you could just escape the area by jumping down into the tracks. Hmmm

I can't get over how massive this airport is. After their new terminal is added (it is currently in construction), Frankfurt will become the largest airport in Europe!
Well, my internet time is almost up ($10 an hour!) so I should go. Our flight leaves in about 90 minutes.  I know I'll be too tired to post in the day or so, and the kids will be attached to me for the next month or so, making it difficult to type.  So, this is my time to get this done.

I have MANY suggestions for those who are contemplating this journey to see Dr. Simka in Poland, as well as a translation list for the nurses who do NOT speak English.  Feel free to email me and I will help as much as I can.

Would I do this again?  Yes, I would.  Even if this is only a temporary fix, it was such a blessed time with meeting new friends, and people who were on the same road as I.   I did not expect to meet any other people, or to have such great fellowship with them.  They are all so dear to me.

I pray this last flight is a safe one. I am NOT a good flyer, and every little bump I wonder if that is my last flight. Doesn't help with that terrible (and fatal) Air India crash a few days ago.  But the Lord has me in His hands, and that is all I can ask for.    Blessings to you all for reading this.. as I know it certainly hasn't been too entertaining. (I'm not
a writer at all, but just wanted you to know how my progress is going).  Sorry for making you listen to my holidays travels in the midst of the health information!

Now, for one more cup of coffee...
Well, today I got up extra early so-as to have breakfast with the part of our group that was leaving by 8am for the airport.  So I was ready to go at 7am .   Of course, I was up late, because we downloaded LOST from last week as we missed it on TV.  Probably not the best choice, but we couldn't wait anymore AND I think that even though it will be on TV tonight in  Canada, I'm pretty sure it won't be on TV here. Oh I wish they would have just left it as is, and left it on Tuesday nights (then we would have seen the series finale live).

Anyhow, we were going to head down to Auschwitz today as it was our last day and FINALLY sunny!  However, as it turns out, it is some type of holiday today, so EVERYTHING (other than restaurants) is closed .. even tourist places!  What a disappointment.   We ended up just walking a bit around close to our hotel.

This was a HUGE sculpture .. and we still aren't quite sure what it is!  There were not many people walking around, compared to what was normal for mid-week or Saturday, the streets almost seemed deserted!  Nonetheless, we spent some time just sitting on a park bench enjoying the sunshine and the view.  As we started to walk back to the hotel, I started to feel a bit weaker and hours later now, in our room, I feel very exhausted and somewhat nauseated.  I imagine that recovery might take awhile and especially after walking to much yesterday, I can't expect my body to be up to full form immediately.

As soon as we got back to our hotel, we remembered there is a movie theatre in the hotel, so we went up to the 4th floor to check it out. Turns out they have most movies in English and just use written subtitles in Polish.   We got there just as Robin Hood was starting, so we paid our $5 Canadian each (actually it was 30 zloty total) and went into a MASSIVE theatre, MUCH bigger than Mission Silvercity, and there was maybe 5 people in the theatre.  You also have a choice of salty popcorn or sweet popcorn. I thought that was interesting.   A large bucket of popcorn cost only $2.50.  I liked the movie, Kirk thought it was long.

We are supposed to meet the rest of our group for dinner just after 5:30pm tonight (which is in 15 minutes) so I thought I'd better write a bit today before I crashed completely. 

My hands and feet are still warm, which is so odd for me.  They almost feel clammy!  Does the rest of the world feel this way? I cannot even remember this being like this before.   I imagine I'm still dealing with jet lag.. it's been almost a week, but I never really did sleep well over here.  Most of us from Canada have complained of waking up at 3am and not being able to get back to sleep, which is why I think it must be jet lag.

We ran into a new group of people to be treated this week, and it was great for us (and them, I'm sure) to give them tips on what is about to happen, and what to do to get more information during their time here.  There really is a great lack of information given to the patient.

Well, we have to be in the hotel lobby around 3:30am (yes AM) so I am NOT looking forward to that. We decided to pack this afternoon so we don't have to get up as early tomorrow, but really, I don't think saving us that little bit of time will make us feel any more energized in the morning.  The hard part is we have a 6 hour layover in Frankfurt.. and they really don't have anywhere to sleep, just the airport chairs :(

Funny thing is, we leave around 2pm from Frankfurt on Monday, and arrive just after 2pm in Vancouver on Tuesday (because of the time change)  .. hmm.. one would think that we should feel great if we arrive the same time we have left. If only it were so simple!   Poor Kirk has to go back to work the next morning. I really don't know how he is going to do it.

My shots are going okay, mind you.. I've had Ron do them both days. Not sure if I'll skip tomorrow's dose and have my sister do it when I get home, or trust Kirk to not take out any aggressions he may have suppressed while giving it to me (just kidding hehehe).  You get some pretty nice bruising when you do this though, so my entire mid-section  is getting pretty sore to touch.

Well.. it's dinner time.. so I guess I should get downstairs :)
It's now the end of a very long, but very fun day!   I finally has my first night of fairly decent sleep. I think it probably takes this many days (5?) to start to get rid of your jet lag perhaps.  Every morning we have gone down to the hotel restaurant where we are given breakfast (included in our hotel stay).  It is a nice time of  day where the people who had the procedure all meet -- I always enjoy the fellowship (and the strong coffee doesn't hurt!).    One of the patients here was a doctor (Ron), and he kindly did my first injection for me. Oddly enough, I didn't even feel it at all! In the hospital, the nurses here basically jabbed it into my stomach, and it was quite painful.  Shows how when someone takes care to do it kindly, it makes a world of difference!  I hope to find Ron at breakfast again tomorrow!!! :)

After breakfast, we decided to take a trip to Krakow as we heard it was a very beautiful city.   Getting directions isn't always the easiest in a country where many people do not speak English.  However, we did manage to find our way to the train station and find the ticket counter.  We only had a few minutes to catch the next train and we were next in line to get tickets.  However, a lady walked up and stood so close beside the person buying a ticket at the counter (in front of us) .. so close they were almost touching.   Apparently, she felt she could just walk up and butt in line and buy a ticket before us.  This is something that happens all the time here.   If you are in line, anyone can just come and butt in front of you.. just because they want to, perhaps they are in a hurry.  I was told by someone who lives here, is your choice is to either let them do it, or argue with them, except  you might end up arguing for 15 minutes about it!  Very bizarre custom.

Anyway, we ended up missing the train and had to wait another hour for the next train.  We thought the train would take under an hour to get to Krakow, but once on the train, someone told us that it would take almost  2 hours!  It was a long ride, but very beautiful to see different parts of Poland.  We finally arrived around 1pm.  What a beautiful city Krakow is .. absolutely stunning in architecture!  We walked around the city for a bit until it started to rain and we ran into a little covered courtyard to have lunch, followed by a little more exploring before we had to get back to the train home at 5:35pm.    That really isn't a lot of time to explore such a grand city!  I hear there are castles and other places around that would have been wonderful to see, but we only had a few hours.   We realized a bit into our walking journey that I wasn't limping anymore.  In fact, I didn't even feel weak or tired!  I haven't felt like that in over 2 months!  It was wonderful to be able to walk around, without limping, without saying "I'm too tired".   It was a true blessing!  In the train station to return  home, we weren't sure if we were on the right platform, and asked a young man sitting beside us if we were waiting for the train to Katowice.  He ended up being a teacher of English at the university in Krakow, and was heading home for awhile (a 5 hour journey by train for him!).  We had wonderful conversations with him all the way back to Katowice, about Poland, its people and culture and many other topics. It made our 2 hours feel like 20 minutes. It truly was enjoyable. 

Upon arriving home just after 7:30, we realized that the city had already shut down for the night, so apparently on Saturdays everything closes down early.  We decided to head back to our hotel and have some conversations with some of our group here, spending a few hours just talking about nothing in general.  It was a glorious day, loved the travel, the sights, and the conversations.   I really don't want to leave and tomorrow is our last day.  I don't think we'll be able to see Auschwitz as the flooding is just too extensive out there.   I probably shouldn't be overdoing it anyway. I would have loved to see the Salt Mines as well, there is just too much to see and we have so little time.

We'll have to be up at 3am on Monday morning to head towards home, so truly tomorrow is our last day here.  I think we'll just walk around and see what's here, and see what other people may want to do and spend time with people rather than just sightseeing by ourselves.

Overall, a wonderful day.. I'll post some pictures later.  I want to get to bed so I can get up early to have breakfast with some of those that are leaving tomorrow before 8am.

I won't be able to update anything once we leave on Monday morning, as Frankfurt airport doesn't seem to have any free internet .. so we are stuck on a 6 hour layover with nothing to do :(

So elated I was walking well today.. I hope that tomorrow brings more improvements!
Well, it's certainly been an interesting 24 hours.   I will try to recall as much detail as possible.

We were taken from our hotel to the clinic/hospital at around 8am on May 20th.  Once we arrived, we had quite a bit of paperwork to fill out, authorizations to sign etc.   It was correct when other people who have had the procedure, have noted that none of the nurses spoke English.  This certainly proved to be quite a challenge!   I had a sheet of common phrases used in the hospital which were translated, which helped a bit, but we did run into situations where we were unable to explain our needs to the nurses.   We were given blood tests and in IV inserted into the arm and then assigned a bed.  I was in a room with two other women.  We were given gowns to wear -- opening at the front, the only thing of ours allowed to wear was socks (oh joy).    We were then each given catheters (yes, more JOY) .. and I was the first in our group to be taken into the procedure room.   They have you lay on a VERY narrow table (much more narrow than Canadian operating tables) and the anesthetic was given.  I asked why the room was spinning and how I was dizzy.  It was then told that it was an anesthetic.  They hadn't warned me that they were giving me anything.  Oddly enough, it's just the way it is here -- they do things without telling you.    No one spoke to me during the procedure, which I found to be quite odd, all that they said was "we are done" and the doctor left the room.  Many of us found this lack of communication with the patients quite frustrating.  I found out later that they ballooned my left jugular vein, but nothing on the right, and no stents were placed because (1) I was young and therefore stronger ?? (did anyone look at the year I was born? sweet of them to say .. but "young"? hehehe)  and (2) that with the size of my veins they would have had to use the largest stent and they didn't feel comfortable with that.   The only reason I even found out that information is because Kirk insisted he talk to a doctor about what had happened, as no information was being given to us post-procedure.  

As I was laying in the bed in my room, the pain in my groin at the site of incision was becoming more painful.  What they do post-procedure is wrap your mid section like mummy, and underneat that gauze at the incision site, is a large cloth (so to speak) to create a pressure point on the site to stop bleeding.  Because the nurses couldn't speak English, when I asked them about the pain (pointing to my incision), they would just check for blood and press down on the gauze, which for me only made the pain worse.   For the next hour the pain increased to the point I thought if I kept this up much longer I'd either have to break down and cry (which I later did) or pass out.   Finally, thanks to the mom of another patient who spoke Polish, she advocated for me with the nurse, explaining that this wasn't just regular pain, that this was severe.  She finally got the message, and moved the dressing over a bit, moving the pressure point which they have there to stop the bleeding. The pain stopped immediately.  They said that it must have been situated on a nerve or something.   They really need to have an english translator working there!

We weren't informed that there was a call bell for the nurse until later that evening.  It was strange, because we all laid on our beds, unable to get up (you weren't allowed to move for hours after) .. our door was closed and we were wondering how we would be able to call for help if needed, if the nurses were unable to hear us.  Knowing where the call bells were (or that they even existed) would have been helpful to know at the beginning.

Finally by evening we were allowed to eat a meal, and it was definitely interesting, but was grateful for food!  We had some good laughs together and with the visitors that came in. I told Kirk to just stay at the hotel and relax and I would see him in the morning.  So, who knows what he did while I was gone! :)

This morning the nurse came in to the gal across from me, did something and the patient said.. did she just stick me with something?  I turned to see her heading to the next patient and yes, indeed, sticking a needle into her stomach, no words uttered.. then she came over to me and yes, she lifts up  your gown, pinches some skin of your stomach and sticks a needle in.  No warning or explanation of what they are about to do, or what they are doing.  It is all very strange.

I just realize now that I had wanted to take a photo of our room, but I forgot .. many things you forget to do.   I did take a picture of a helicopter outside our room.. strange how they placed a helicopter in a little park behind the building.

Arriving back at the hotel the next morning at 8am, we had breakfast at the hotel and again sat around with the other couples who are involved in being treated here as well.  We were all told that we needed medication after.   For those of us without stents, it's a 7  day medication.  For those with stents, it is a LOT more involved.  We all headed together to the pharmacy to get the prescriptions filled.  Shock of all shocks, it turns out that it's 7 days of SHOTS.. yes NEEDLES!  We all know how well I do with that. How am I supposed to stick myself in the stomach with a needle? I'm still trying to figure that one out.  Another huge mis-communication over here.  It should be something explained to the patient before they leave the hospital. 

Kirk & went to the local mall by taxi to exchange something we had bought earlier, but about 30 minutes in of walking around, I started to have pain in my groin area so walking was very difficult.   It's funny how taxis work here.. you end up having to barter your fare before you get in.  All very different!  We took a taxi back and that brings me to here, writing this.  I forced Kirk to go down to the gym to exercise and get his body working.  This jet lag is really hard to get used to.  Even though Kirk was at the hotel last night and I at the hospital, we both woke up at 3am, unable to sleep  until around 4am.  We aren't looking forward to readjusting to BC time, esp. since Kirk has to work the day following our arrival back home.

Oh, I guess I should discuss what I feel post-procedure.   There really isn't much to tell yet.  One thing is that my hands and feet are warm when they normally were always cold. They are so warm that sometimes Kirk says that they are actually hot!  This certainly is  a strange feeling for me.  Other than that, I don't really feel different.  People that I have met here have said that I have color in my face today, where when they met me I looked gaunt and pale.. I guess that is good!    I still have numbness in my leg and hands, so we'll see if that is something that goes away in time.  It is a waiting game I guess.  One fellow here said he always could feel/hear his heartbeat in this ears, and now that is gone.  So it seems each person has their own story with how they feel different.  The doctors say that 30-50% of people seem to restenose .. so let's just hope that I'm not one of those. But even if I am, if that is something that you have to consider as a regular treatment to feel better... let it be so (just hopefully in Vancouver by then!). They do want us to come back in 6 months for a checkup .. just not sure how or if that would work.  Financially, this is a HUGE venture and not an easy one.

Thank you all for your support and your prayers!  Hopefully tomorrow if I feel good enough we can go and see Auschwitz. It has been raining so much here, that Auschwitz was closed for awhile due to flooding, but they say it has opened again.  However, it is raining a lot again today, so we will have to see what tomorrow brings.

Kirk here-this is the update for the day.
After a sleepless night (Dawna felt quite sick from the post-prednizone treatment) we shuttled to the Euromedic clinic at 8am. There were five patients in our group and all had family or friends along for support. Some of the patients were quite disabled from their MS and only a few with slight issues.

( Dawna's Bed )

On this day they only performed stenting on two of the patients- Dawna was not one of them. In her case, the doctors found that though preliminary Doppler results indicated that she had blockage on both sides, only one side would be venoplastied. Their reasoning was that there was sufficient blood flow on one side during surgery while the other was blocked. After the venoplasty, doctors indicated that there was better blood flow in the vein, post surgery. After being moved to her bed, Dawna's hand were warm- something that hasn't been for some time. This was the good news so far. However, Dawna was in a lot of pain from the surgical site in her groin. The surgical team had limited conversational skills in English and were slow to assist her. At the time that I left, she had been given a Tylenol and was waiting for it to kick in. Before coming to Poland, Dawna had made a English to Polish translation sheet of common phrases. This was a huge help as she was able to indicate what she needed. The nurses made a copy of it for future use with English speaking patients. There was also an ex-pat from Poland who had come from Mexico with her son. She was also invaluable in getting information from the doctors about remaining patient questions. Information was limited otherwise, and the surgical team seemed eager to leave without distraction. Having the ability ask direct questions about procedures and post surgical follow up was essential for patients and family to feel more at ease.

( Immediately Post-Procedure )
Woke up at 7am .. trying to get on schedule with this city, which meant that we only had 5 hours sleep.  Wow do we feel exhausted.  I'm also having some stomach issues, I think because of the prednisone.  It can cause  wreak havoc on your stomach and I stopped the medication I was taking  (an antacid) for that early (and my neurologist said it was okay), but I'm having pain so it probably was not a good idea to cut that medication short.  I feel pain and and nauseous all day, in a toxic sort of way (hard to explain but it reminds me of the same feelings I had when I went off drugs post-lung surgery back in 1998).   It's been happening for a few days, but there really isn't anything I can do about it.. I will mention it to them tomorrow before the procedure, but not sure what they can do.  It really is ruining my ability to truly enjoy myself here, as it makes me feel really unwell and I don't want to eat any food.

The 5 patients who are here for the procedure tomorrow met in the lobby at 9am to be taken to the clinic for an eye examination for optic neuritis.   It was a good time, for as we sat in a room waiting for each person to be tested, we got to spend time finding about who everyone else is and their "stories". Believe, me there are some very difficult ones.   Because I didn't have to have another MRV done, after that exam was done Kirk & I had the rest of the day off.   We decided to take a taxi to a nearby shopping centre to look around.  I have never seen such expensive shops in my life!  They have the odd shop here and there with normal priced clothing (like a Bootlegger, or Levi's store etc), but most of them are very high quality and designer, so the clothing is very expensive. 

We found out that if you are on the road, either in a car or as a pedestrian walking, you are at risk for being hit.   They are very aggressive drivers, which doesn't bother me too much, until you are the person walking by the road and you realize that even if walking on the sidewalk, you aren't safe.  (They park on the sidewalks here).   I'll have to remember to take a picture of that.

After our long shopping day (it was a HUGE mall, maybe the size of metrotown, but one floor only), we took another taxi back to the hotel and talked with the kids and Kirk's parents through webcam for awhile.  It was nice to see them again (but hard!).   Around 6pm we decided to walk into the city a bit and head towards a Pub that was known for having great steak.  It was AMAZING steak.  (I'm writing very quickly because my procedure is tomorrow, I'm jetlagged and I have no energy to sound interesting, maybe I can edit this later when I get more time).  The interesting thing about Poland (and Mainz) is that is seems as though 95% of the population smokes.  You heard me .. I don't recall seeing many people who weren't smoking.  Everywhere you went, it smelled like smoke.  It's absolutely unbelievable.  So, when we went to this small Pub for dinner, I knew we'd come back smelling like smoke. That's just the say it is here it seems.   Restaurants have non-smoking sections, and hotels still have smoking rooms.  I haven't seen any warnings on cigarettes like there are in Canada.   It's an automatic in a restaurant (at least all the ones we've been to) that they bring you a glass of water and an ashtray.

This picture was taken on our walk to dinner:

Anyhow, another long day, although relaxing in a busy sort of way.  Lovely to meet the people here. More people speak English here than in Mainz, Germany .. where hardly anyone spoke English!

Gotta get up soon to go over to the hospital.. kinda nervous, I think.  I mostly am having so much difficulty with the stomach issue (feel nauseous and yucky whenever I eat) that I think it's distracting me from thinking about tomorrow.. but I'm sure it will hit me in the morning (esp when I realize I'm not allowed to eat or drink when I wake up!) .. I need coffee to stay awake!

I will try to see if Kirk can keep you posted as I don't get back from the hospital until the next day early morning.   Thanks for all your prayers!
Well, with the change of flights last night, our departure time also became earlier than originally planned.  This meant less time with the kids, but I did manage to fit a bit of time in with them before we left.  It was all fairly uneventful -- traveling to the Vancouver Airport.  Honestly, I don't really even recall the first leg of the flight from Vancouver to Calgary but neither did Kirk.  I was going to blame it on my MS brain, the fact that I can barely recall being in Calgary, but with Kirk not remembering either, I figure it must be the jet lag that happened by the end of the trip.

What I do remember is our flight from Calgary to Frankfurt.  With all the last minute changes of flights we had business class on all of our flights there and back.  This was incredible.  You had your own "pod" so to speak.
For people who have traveled business class before, just humor me.  For me, having never been in business class, it was a world all its own.   I had assumed I'd be hungry like on any other flight I had been on in my past (which weren't many).  In business class, you get fed almost the entire way! We had thought we would sleep just after dinner, but dinner (seriously) took almost 2 hours to complete. 

From appetizer to the meal to desserts, it was probably 6 courses all together.  Amazing food.  I felt sorry for all the people behind us (which is where we normally should be!) eating peanuts while we were having steak.

My thoughts on flying, however:

We eventually got to have a bit of sleep, but only a few hours before we ended up in Germany. Not having traveled much before, the airport there in Frankfurt is quite .. .confusing. It is very large and unless you really know where you are going (which we didn't), it can pose quite a problem. We eventually found a place to store our carry-on luggage after which we attempted to locate the train station. Up to this point, I had been doing pretty well with respect to walking and not limping so we decided to take the train into a city called Mainz. I had pre-printed out someone's instructions of the train ticket dispensing machines prior to leaving our house, which was invaluable as the machines were in German and very difficult to understand. Many people just sat there staring at the machines, not knowing what to do. Even with my instructions, it took us around 5 attempts before we could obtain a ticket!

Mainz is very beautiful and quaint and we had a great time just walking through the old part of the city.  But walking for a few hours was proving difficult for me (once again) and I started to limp more and more as time progressed, so we decided to head back to the airport early.   This is where we fit the next 6 hours, sitting on chairs and waiting for our departure time of 22:22.  It was a VERY VERY long day waiting.  After we got on the very small plane towards Katowice, we only had 1 1/2 more hours of flying.  It was after midnight when we arrived at Katowice. Once in side the small terminal, we came out of the gates, looking for someone who would be holding our names (meaning, "our ride"). Oddly enough, no one was there to pick us up.  Very odd.  We stood to the side for a few minutes and then Kirk realized that he saw someone's sign say Euromedic, but it was the incorrect name on the card.  Long story short, the guy who came to pick us up had had a very long day as well, and had written down the wrong name.   We eventually got back to our hotel after 1am.   I don't think I've ever traveled over 30 hours in one stretch .. it certainly takes a toll on your body. Both Kirk and I can barely even remember what day it is now.   Off to sleep, hoping to get some REAL sleep where I'm not waking up every hour.  In the morning, I have an eye exam with the other 4 patients that are also here to be treated. Night!  (oh, and once I figure out how to get this thing to accept photos today, I'll add some.  I keep trying but it just says "error").
What a busy day it's been .. getting everything ready and organized before our trip tomorrow.  I like to have everything written down for the grandparents who are watching the kids, just so that it's easier for them and they get a feel for what is the norm.   I finally got my novel written and printed out (of course, extra pages would continue to flow throughout the day, creating further mini-books.)

I had plans to finish off the DVDs for the kids, of me reading story books to them, creating little cards to put under their pillows for the night that I was gone, and spend the evening with the kids -- some quality time with them before I was to leave.

However, this was not to be.  People who know me well, know that I love technology -- if it plugs in.. it can find a home with me!  So, when I was told that I really didn't need to go online to checkin for my flights because I already had seat assignments and could just give my itinerary to them in the morning, I thought, "are you kidding?  I get to use technology .. why would I pass up that opportunity?"  So, I went online to Lufthansa's website and put in the same information I had before when booking our seats.  Oddly enough, it said that my reservation wasn't found.  I tried several times thinking I had mistyped something, but no, each time it came up with that error. I decided to call them directly.   When I finally got through to an agent after waiting for about 15 minutes, I was told that ALL our flights had been cancelled because Aeroplan did not finalize the flight plans for our tickets, and therefore all tickets had been deleted from their system.   I immediately felt sick to my stomach.  How could this happen on the eve of our departure?  I spent the next few hours trying to get it all straightened out.  Apparently, there were few flights, but they were able to get us flights on the same day with extra layovers and more stops.  The only benefit was that we were now in Business class for the entire leg the journey, both there and back.   By the time that I had the tickets finalized and a GUARANTEE that yes, indeed I did hold these tickets, it was almost 9pm.  Poor Daniel was near tears because I hadn't spent any time with him that evening, and now because of the change of flights, I had to leave earlier the next morning, not allowing time to play with him then either.  All in all, I am glad that we were able to get flights.  I cannot even imagine what would have transpired had I not been able to get any flights.  I guess I would have had to give up my surgery date!!!

I didn't end up getting to bed until midnight.. making sure that all was in order for the next morning.  I had some gifts for the kids that I wanted to give them to keep them busy while we were gone, and I wanted to not be rushed when I gave them. 

Again I wonder what plan God has in all of this .. He seems to like to test my stress limits.  I just pray that that was the last major issue that will occur this trip.. It's time to start the adventure!
What an absolute GLORIOUS day I had today.  I got up at 4:30am to drive up to Summerland for a doctor's appointment, more specifically a Hydrogen Peroxide treatment.   I don't recall the last time I got up that early to go anywhere.. let alone being dressed by 5am!  Let me tell you one thing.. the day doesn't start right when you are out driving, before breakfast, and Starbucks isn't even open yet!  I had to learn to drive without coffee .    

I had preplanned a bit of the trip by putting some sermons from John Piper on CD to listen to while I drove.   Specifically, sermons on suffering. I figure I have a thing or two (or 20) to learn on the topic.   Much like in the movie, The Matrix, where the people think they are really living in the real world but aren't, I think I'm starting to realize that the way I think about life isn't actually the way I'm supposed to think about my life.  Somehow over time I've gained the habit of separating my memories into different sections:    good times in our lives and the unfortunate happenings in life.   They don't share the same book, they are separate entities.   But, I am realizing that they really should be combined into one and life should be looked at as an entire piece, a map of my journey from adolescence up to today.  It's a journey of intense character building, with good times even during the bad.   And, I think that is what I've been fighting against for so long -- I DIDN'T ask for any of these traumatic events in my past (and present), so I don't deserve them (which is what I was telling myself).   Instead of focusing on the blessings, all the stressful and heart-wrenching experiences seem to become the chapters that I create in my book.  "Oh, 1998?  Yes, that was the year of my lung surgery".   "2007?  Julianna was born amidst the boys being in the hospital with e.coli".   I said I can see that I need to change my perspective, but it's going to take some work.  It's amazing how habits can creep up on us and become a part of who we are without us even realizing it!  As I said, I have a LOT of work to do (on my character).

I am also beginning to see how important it is to view the sufferings we go through as a gift.  (I say "beginning" because part of me screams for a life of no pain, with children not constantly ending up in the hospital, and just having a period of time with no crazy experiences).  I constantly battle with that desire for an easy life.  But we all know that we are supposed to "die to self".  It's great in theory, but how does one work it out?   Becoming great in character (let's say like Mother Theresa or Billy Graham) is romantic in concept, but in reality? It's tough!  The working of it, the steps involved are painful and not really palatable.  It requires dying to self.  Oh, that's not something that comes natural to me.  ANOTHER thing to work on!   I've got to stop looking for the end of this "character building road" and start realizing that this road does go all the way to MY end, and the only place where it does end is in heaven.  I'm talking to myself here:  So "suck it up buttercup" and stop complaining about the bad stuff, and get with the program.  Love the Lord, and trust that He knows what plans are good for me. (Jer 29:11-13).  While I was in my own personal euphoria driving through the mountains, one song came on from Decyfer Down which expresses this dying to self, which I thought was rather interesting timing, backing on Piper's messages.  We need to die to self and let Christ live through us completely, so when people look at us, they don't see us -- they see Him.

It's entitled Walking Dead and goes like this (and you'll have to excuse me, I'm a rocker at heart .. so this music won't appeal to everyone):

Pull the trigger now, end me,
Mark me for the kill,
Like I marked your hands your feet,
I spilled all your blood, flowing deeper,
To suffocate the sin, till I'm drowning you again

I am so alive, since you took my life
I'm walking dead now, only you remain
I take the life you gave, I walk from the grave
I'm walking dead now, I am not afraid!

Stabbing deeper now, spill me,
My body left for dead,
Like I pierced your side until it bled,
Now the blood flows freely,
It fills me till I see, that there's nothing left of me

I am so alive, since you took my life
I'm walking dead now, only you remain
I take the life you gave, I walk from the grave
I'm walking dead now...

However, I had a little glimmer of grace today -- a gift just for me.  Let me explain.  Normally, driving 3 hours by myself would be fine, but that's all it would be -- just a chore that needed to be completed.  However, today it was a completely different experience.  Having gone through all that I have physically and emotionally lately, it really makes me see the value in the little things -- being able to go for a walk, even driving!  As I drove on this beautiful sunny day, the trees seemed greener, the sky bluer, the eagles greater in number, the waterfalls more crisp -- everything seemed more alive.  I realized at that moment that through my suffering I have been given the gift to see the gifts that God has given me.  Something as simple as a drive to the interior was a gift from God to me.  It was a time of refreshing and joy.  I haven't felt that "high" in a long time.. exhilaration, peace and fulfillment were some of the feelings I was experiencing.  I don't think I would have seen all the beauty around me as I drove if my life was free of suffering.   Suffering gives you a different pair of glasses.  It's just up to us whether we want to wear them and adjust our sight to our new world, or step on them and complain about how we can no longer see what we want to see.

After my appointment it was time to return home and by this time it was in the afternoon.  It was sunny and hot and frankly after looking at the lake, I wasn't sure at that moment why I didn't live in Summerland!   These guys get snow in the winter AND beautiful summers.  Hmmm.....  time for  a move?   Anyway, I just had to stop on the Coquihalla and take this picture for Kirk:

On the way up, I listed to John Piper on Cd and was encouraged to change my view of suffering and to focus on my blessings.   I figured I had done well at "school" that day, so it was time for recess.   I'm sure there is a hidden testosterone side of me .. because one of my favorite things to do is drive.  I always said as a kid growing up .. "if I could guarantee that I wouldn't get killed, I'd want to be a race car driver for my job".    So, picture a beautiful Okanagan Valley, with temps in the high 20s .. sunroof open , all windows down.  Oh good!  Now we hit the 110km part of the highway .. crank the music (Decyfer Down) and sing into the wind at the top of your lungs .. life just doesn't get any better than this (well, except that I'm partially deaf now and what used to be my hair is now a ball of matted organic matter on top of my head -- literally!).   Actually, I had to end up using cruise control to keep myself in check.. it's just WAY to easy (and fun) to go faster than what you are supposed to go.  That, believe it or not, was a gift from God to me.. all of those things combined for me created a little piece of heaven on earth.   It's just what I needed.   I feel as though joy was restored to my soul.    Yes, I still struggle with many things in my life right now, but today was a holiday -- a "vacation from my problems" (as in the movie "What about Bob").   God knew I needed an emotional holiday, a recharging, and today was the perfect day.   Hmm.. wondering if my female friends out there would be able to relate to loud music, hot summer wind and driving fast through mountain roads.. I know.. let's just say it's like a day at the spa (I've never been to one, but I hear that people like it?)!  That's somewhat how I feel.  I feel rejuvenated and alive!

It's late, and I'd better get to bed. Tomorrow we are going to celebrate Julianna's 3rd birthday, because I'll be in Poland on her actual birthday (18th).   What a blessing all my children are.