August 31, 2008

THIS WEEK ON THE FEARLESS FRONT

Last August, our family made our own personalized Lyme Disease Awareness bracelets.



I remember that day well. The emotion of it rolls over me today as vividly as it did that day. I remember thinking that we were seeing the light at the end of the tunnel. I remember feeling a profound sense of relief at that thought. I remember a sense of well being. I remember being hope-filled. I remember wanting to celebrate all that we were leaving behind. I remember believing that by this summer, LD would be a distant memory.

At the beginning of our Lyme journey, God gave me the verses from Proverbs 3:5-6… He called me to

“TRUST Him with all my heart...Run to God.
Your body will glow with health. Your very bones will vibrate with life.”


So, as this summer draws to a close, I must face the reality that all that I had hoped for, yearned for and believed it would be, it has not. Not yet, anyway. While my circumstance remains unchanged by the hands of time, the God I believe in remains the same. He is still faithful and His promises remain trustworthy.

Despite how our circumstances may appear, despite how we may feel, we have been called to TRUST God and His Promises. Therefore, we chose the word TRUST for our bracelets.The promise and hope that our bracelets were created to reflect have not lost their meaning but rather have grown in significance. They are a daily reminder of what God is teaching us as we sojourn through this dark and painful time in our lives.




The following explains what the rest of the bracelet represents:

The black beads represent the dark abyss of unrelenting pain and craziness that engulfs one as this disease progresses

The crystals represent all the tears that have been shed along the way. Tears of pain, fear, frustration, anger, bewilderment, grief…

The silver ball represents the silver lining/blessing that can always be found…even in the midst of darkness and tears.

August 30, 2008

THIS WEEK ON THE LYME FRONT

The familiar roller coaster week

Progress is slow. Often it is 1 step forward, 3 steps backward. That is just the nature of this beast. There is no ryhme or reason to explain a sudden onset of symptoms. There is no way to predict what will happen one moment to the next . There is no miracle cure aside from the divine. There is no magic pill. No fast track protocal. There is no definative medical finish line.

The only thing predictable about living with LD is that it is consistently a white knuckled rollercoaster ride of highs and lows and just about everything in between.

This week I've been riding the roller coaster at a frenzied pace. And its been mostly downhill.


One minute I'm up, the next minute I'm down. Outta bed, back in bed. Can see, can't see. Heart calmly beating, heart frenetically racing. Clear head, foggy head. Walk down stairs, get carried up stairs. Joints are spry, joints are stiff. Sounds are calming, sounds are deafening. I breathe freely, I gasp for air. I feel alive, I feel like dying.

And all of it can happen in the blink of an eye.

Confusing to understand.

Even more confusing to live with.



August 29, 2008

IF I KNEW THEN WHAT I KNOW NOW

So here’s the thing... this photo was taken the week I got sick.

July 2006


If I knew then what I know now I wouldn't have believed that 2 years later, I'd still be sick.


March 2008


If I knew than what I know now I would not have thought it possible to endure this journey.



But I have survived it, and I will be given the strength I need to keep on persevering for as long as it takes to finally beat it.




As a family, we have learned the importance of taking this journey one moment at a time – the grace, strength and courage we need to persevere are not given ahead of time for the worries of tomorrow, but they are gifted to us as the moment and need arises.


And even though we did not choose to have this disease prey upon us, we can choose how we respond to it. While it is a nightmare to endure, we do not have to be victims of it. Instead we can choose to see God in it and TRUST Him through it.


When we choose to TRUST God in the middle of the darkness, than we are empowered to live from a position of victory.


AVERY


Avery is the baby of our family. She’s my baby, my last baby, the baby I was in no hurry to have grow up – I wanted to savor every precious moment and LD has taken most of my memories from me. The reality is that I’ve missed out on a whole lot of living in the past 2 years. Life cannot be re-lived and I mourn for what I have lost.


When I became ill, Avery was a toddler who had just celebrated her 3rd birthday. She still had a na-nu (soother) and a blankie.


And now she is a young lady of 5, who can swim without water wings, ride a two-wheeler and print the alphabet. She is feisty, determined and highly opinionated. She is also quick to laugh and has a wicked sense of humor.


Recently, she very matter of fact told me she’d like a strapless dress….and she prefers to be called the “Little Woman”



My mom took her shopping for a dress for her 5th birthday. After snubbing her nose at several of my mom’s selections, she honed in on one dress in particular. Mom was concerned that it was a little too old for her. But she was not to be deterred and insisted on trying it on. She emerged from the fitting room, twirling and prancing and exclaiming,


“This one is perfect...

I look like a woman.”


In June of this year, Avery graduated from preschool. It was a symbolic end to her 2 year preschool ‘career’ and a bitter sweet day for me. Last year I was so ill, I pretty much missed all of the end of the school year celebrations …never in a million years did I expect that this year I would still be fighting to re-gain my health. However, regardless of how I felt, I was incredibly determined to white knuckle my way through the celebrations this year. And I’m so glad I was able to do it because the following day my ability to get out of bed was once again taken from me. Little did we know that I would spend the next 8 weeks more or less completely bedridden.


So Avery’s graduation was a bittersweet day for me and for Avery, well, it wasn’t exactly the big hoorah celebration she expected either. In fact, she's mostly bitter about it.



The teachers really go out of their way to make graduation a special day. It is a ‘real’ graduation ceremony in every sense of the word, from the music to the graduates in full cap and gown, crossing the stage with pomp & circumstance to accept their diplomas. It’s cute and totally pulls at the heartstrings.


HOWEVER, Avery was highly unimpressed with the whole cap & gown regalia. And she was madder than hek that her teachers made her wear that "stupid cap and ugly gown" because it covered up her beloved woman dress… this was an indignity she endured very loudly and one from which she just could not recover from in time to savor the day.


PARKER

Parker was 6 when I got sick.



At 6, he was the highly entertaining half time show at all of Taylor’s basketball games. A pint sized, corn rowed baller who’s amazing ability to consistently sink shot after shot from just about anywhere on the court left the crowds applauding in awe.


2 years later, he’s still at it. And has even developed his own fan base.



Aside from being NBA bound, Parker is trying to decide whether he will pursue a career as a masseuse or a fireman.


I think he’d be excellent at either. I can verify that he gives excellent hand massages and he definitely fits ‘fireman criteria’ – he’s strong, athletic, and handsome.
In addition to being very athletic, he is also creative, artistic and his laid back and kind nature makes him popular with his peers.


Yes, Parker is my sweet, sensitive and caring proverbial middle child. He is quiet, thoughtful and worries a lot about mom. He gives the most gentlest of hugs and often wants to know, “How are you feeling today, Mom?”



I am thankful for his vivid imagination...he often spends hours creating with lego or make believing that he is Indiana Jones, Luke Skywalker or Rocky Balboa.



I am glad that he can escape into his imagination as he is easily burdened with worry about mom and as he puts it, " I feel sad because I've forgotten what its like to have a 'normal' mom."


TAYLOR


Taylor has changed so much over the past 2 years.



He is rapidly leaving the ‘teenage’ part of him behind and in its place we see a Godly young man emerging. He is wise beyond his years, dependable, thoughtful, and incredibly articulate. He has a magnetic smile and over the years has developed his dad's unique sense of humor and comedic timing.



He recently pointed out to me that I still refer to him as a kid. He’s right, I do. My head knows that he’s not a kid anymore but in my heart, he’ll always be my kid.


And quite possibly, my kid will be leaving home in 2 short years.



Taylor is entering grade 11 this year and will celebrate his 16th birthday in September. He plans to enter the Air Force upon graduation and pursue a career in law as a criminal prosecutor. We think this is an excellent fit for him as he can talk circles around anyone.


Currently Taylor’s favorite past time is reminding me how many days are left until he gets his learners license. I recently decided that our family should “go green” by selling the van and using public transit. I think September is a good month to begin our new green lifestyle.


Taylor is still passionate about balling. He has recently rounded out that passion with a couple other pursuits. He’s learning to play guitar and has also taken up boxing. He now trains and boxes 3 days a week – I have definite qualms about this latest passion - especially given the fact that he broke his nose and finger playing basketball – which ironically is supposed to be a non contact sport.



I am thankful for the amazing friends that Taylor has. His buddies have been a great emotional and spiritual support to him throughout the past 2 years. I am continually amazed at the depth of character and strength that each of these young men possess. And I am incredibly grateful that God saw fit to bring this unique group of guys together.


WALTER



Walter joined our family 15 months after I first became ill. Walter is a hamster and doesn’t really care. He just runs on his wheel and poops a lot. However, creepily enough, I often find him intently peering at me for long periods of time.


Taylor says that’s just because Walter was traumatized from the 3 month long attempt I made at potty training him. Don’t ask but in my defense, I was temporarily successful in this pursuit…until Walter rebelled.


Taylor says Walter is dumb. I don’t agree. I think he’s smart. And I think he knows a lot more than he lets on.


BTW, Walter is actually Taylor’s hamster.


GRAHAM


My dear husband had just gone back to school part-time to take a whack at finishing his master’s degree in youth/family just shortly after I first became ill. He was only able to finish one course, before the demands of my illness took their toll and he was forced to withdraw from the program.


Just about everything about how our family used to function has changed.



However, some things never change. My husbands sense of humor is one of those. For that I am grateful. I don’t thing we’d survive the insanity of this journey if we couldn’t laugh about it. Graham keeps us laughing with his unconventional and sometimes irreverent way of looking at life.



Personally, I don’t know how he does all that he does and still manages to keep his humor in tact. Not only must he contend with the rigors and stress that are part of being in full-time ministry, but he has pretty much spent the past 2 years having to be both mom & dad to our kids, in addition to being a full time homemaker, caregiver and chauffeur.



I am blessed to have been given a life partner who chooses to stick out this journey with me and who is truly honoring his vow "to love and to honor, in sickness and in health"


SHANNON


It’s hard to believe I’ve survived 2 years of this agonizing journey called Lyme Disease. I suppose I have a love-hate relationship with it…I hate what it has taken from me but I love what I have learned from it.


Who is that buff, well-toned, free spirited gal in the photo?


It’s hard to remember what I was like pre-lyme. I fight hard not to let LD define me…but this is challenging to do because LD is with me every moment of every day. There is no escaping it.


2 years ago, I could multi-task; I could simultaneously talk on the phone, clean my house, and count to 10. I could dress up, put on make-up and live it up everyday. And I could actively and consistently participate in the lives of my kids.


2 years ago, I worked part time at our local community center. I miss my job and the folks I worked with. I was also a bona fide ‘gym rat’ …my day just wasn’t complete without getting in an 8km run and pumping some iron. Now, its considered a 'good' day if I have the stamina to walk around the block.


The reality is that I now face a host of of 'inabilities' everyday. There are a lot of things that I used to do that I have had to let go of.


The challenge for me is to find the 'ability' in my inabilities. Some days, that is a difficult choice to make. However, I have learned that with a few minor adjustments and a positive attitude, I can still enjoy the things I love.


I still love creating – I just do it on a much smaller scale. I still love to entertain – I just do it from the prone position on my couch. I still love to throw dinner parties – while they are no longer elaborately themed extravaganzas the food is way better now that my husband is the chef. I still love to sew – I just sew picc line covers instead of slipcovers.


Most importantly, I can still ACTIVELY love my kids.


August 28, 2008

THE REAL REASON BEHIND BORDER LINE-UPS

Today, we had to make another trip to the USA to pick up my rx's. In the last 2 months we have made approximately 8 such trips across the border to Bellingham. In theory, Bellingham is only about a 45 minute drive from our home. In reality, depending on the border line-ups, it can some times take upwards of 3 hours to get down there. For this reason, we don't often take the kids along for the ride.

But regardless of whether they come or not, there is obviously much talk in our house about the fact that mom has to go to the USA because of her LD. They know that we go to Bellingham every 2 weeks to get my meds for fighting my LD. They know that I have to fly to California every 3 months to see DR H because we couldn't find a doctor here in Canada who knew enough about LD to treat it. They also know that mom is not alone... that truth be told, most lymies are in the same position and must go to America for treatment.

They don't understand it. But then again, none of us do.

And today, we discovered that their whole concept of why folks go to America is slightly skewed.

The kids accompanied us to Bellingham as it was (insert sarcasm) ONLY a 90 minute wait at the border. As we neared the start of the end of the very, very long line up, Avery asked if we were almost there.

How do you explain to a 5 year old the concept of being close yet still so far away?

"Well, Avery," I sighed, "we are close to the border but you see ALL these cars in front of us? They are all waiting to go to the United States. It is a very big line up today, so we are going to have to wait awhile before it is our turn."

"WHAT?!?" she incredulously exclaimed, "You mean ALL of these people have Lyme Disease too?"



August 26, 2008

DR ANONYMOUS


One of DR H's pre-requisites for out of country patients is that they have a local doctor who will work in tandem with him to monitor the treatment process and provide hands on care. Given the hostile political climate regarding the diagnosis and treatment of LD, finding such a doctor felt like an impossibility. Many doctors are loathe to take on a chronically ill patient that can't be 'quickly' fixed. Add to that, a patient who has been dx'd with a controversial disease that is unrecognized in one's country of origin and they pretty much turn tail and run. At least, that has been our experience.

The week before we left for California, we finally found a GP who was willing to take on my case. It was a huge answer to prayer. In fact, I believe it was a miracle. Doctors who treat LD in Canada often come under huge scrutiny by the body that regulates the licensing of doctors. We've been bluntly told by many doctors we've seen that they were "not willing to get involved in my case, because doctors who treat LD in Canada risk losing their medical license".

For this reason, it is necessary to protect the identity of my new GP. So we call him DR ANONYMOUS. DR A for short.

We are incredibly blessed to have DR A in our corner. He acknowledges that my condition is caused by LD and is quietly working alongside of DR H, following his recommendations and prescribing the treatment that I need.

DR A is a God-send.
In the short time that I have been his patient, I have needed him. A lot.

In the past 2 months, I have required urgent and critical care. I have been carried into his office. I have been wheeled into his office. I have needed x-rays, ultrasounds, and lab work. I have required emergency care. I have required a plethora of prescriptions. I have needed his calm reassurances when I was sure that I would die. Poor DR A, has been given a frightful crash course on LD.

Thank you God for DR A.
He is caring, compassionate and unwaveringly supportive.
He is an ally in my fight.

August 24, 2008

THIS WEEK ON THE FEARLESS FRONT

I have been fairly up beat given the 'success' of this week.

I've occasionally struggled with feeling overwhelmed and panicky about my fight but overall I've felt more like my old, optimistic self again. And looking in the mirror, I have felt like i am finally starting to llk like me again. That is a nice feeling. This is the best that I have felt in a very long time. By far. this has been encouraging and a long time in coming.

I have even given myself over to speculation that I may possibly be back at the place i was in March. Which was when i was at about the 8 week mark of my first round of IV treatment. however, one really never knows and I am somewhat reticent to get too excited as things can change for better or worse all in the blink of an eye. For example, after having a fairly 'functional' week, I was hit hard with an exacerbation of symptoms yesterday afternoon. It was bad enough to put me back in bed for pretty much the rest of the day and evening.

Self preservation dictates that I must still take one moment at a time. This weeks glimpse of the light at the end of the tunnel could be clouded by another intense herx. One that once again casts me into a pit of pain and despair. however, I will choose to Trust God through each painful free fall. I am confident that he will see me through.

Besides, when my heart is overwhelmed it makes me more aware of my need to take refuge in the shelter of His strength.

August 23, 2008

THIS WEEK ON THE LYME FRONT

THE SUCCESSFUL WEEK

This week has been a success.

I had 2 criteria by which I measured success with this week.

I figured if I could accomplish these 2 goals, then anything else I was able to do would just be an added bonus.

First, Avery had ballet for 40 minutes every day and I wanted to make it to her classes. And I made it to 4 out of the 5. Success!

Second, a friend of mine laid her mom to rest this week and it was important to me to support her by going to the funeral - I made it, even if I was half comatose. Success!

THE PHYSICAL WEEK

I have had significantly less pain than I have had in a long, long while. My attacks of breathlessness have been less intense. I still having a lot of trouble with my vision - during the day, intermittently have cloudy, blind patches and towards evening, my vision becomes progressively more blurry. My kidneys and my vasculitis have been pretty awful this week - they are both fairly limiting to live with. I'm extremely fatigued which means my day is broken up by many resting periods however my stamina is improved from last week.

THE NEUROLOGICAL WEEK

Well, I'm pretty sure I can say with some semblance of clarity that I have certainly not been all here this week. I have had conversations that I later have absolutely no re-collection of ever having had. My noise sensitivities have been slightly exacerbated and my irritability factor has been marked.

Then there is the odor. There has been a strange odor emanating from our upstairs hallway all week. Of course, quite naturally I assumed that Taylor's room was probably the causative factor of the funky smell. Anyone who has or has seen a teenager's room will understand.

However, as the week progressed the smell became so rank that it could no longer be ignored or forgotten by me. I set out to investigate the offensive source. It didn't take long to discover the damp, moldy laundry that I washed last week but forgot to dry. My bad.

I suppose I can consider it a success that I felt well enough to DO the laundry.

And well one last thing. I lost the van this week.
I parked, was in the store for 40 minutes and when I came out, I had no idea where I'd parked...additionally I couldn't recall what type of vehicle we had.
Poof. Erased from head. Same vehicle for 5 years. No clue.

However, I eventually found the van - so I suppose that can be deemed a success too.

THE PHARMACEUTICAL WEEK

This is my 3rd week on IV Primaxin. I am not a fan. Besides being tethered to my IV pole 4 hours a day, it makes me swollen, bloated and nauseous.
I'm also on oral Zithromax and a whole host of other pharmaceuticals. At last count I swallow 210 pills/week.
And I still have more to add in to the mix this coming week.

August 14, 2008

RE-CALCULATE THIS!

Folks who say that getting there is half the fun obviously had the luxury of utilizing a GPS Unit. Fortunately for this trip, we travelled with our friend's GPS unit aptly named "Mortimer". We certainly made good use of him, as well as had a lot of fun at poor Mortimer's expense. We deviated from our pre-programmed course so many times, that he grew hoarse from repeatedly saying,


RE-CALCULATING!



RE-CALCULATING!

Maybe we're easily entertained but we certainly had fun imagining what Mortimer would actually say if he could say what was really on his mind.

"Oh No! He said it again!"

Poor Mortimer. Really. The thing is that Mortimer really served us well despite our relentless teasing. It is only with his assistance that we were able to aptly plan a well-timed execution of all the pit-stops that we needed to make as we set out for home today. First stop on the agenda was the Seattle Premium Outlets. No, this was not a stop for me. This was for Taylor. In fact, our promise to take him there was about the only reason he willingly went to Seattle in the first place.


Taylor loves to shop. More specifically, Taylor loves to buy shoes. Lots of shoes. The more the merrier. Imelda Marcos eat your heart out. Graham is concerned that he will need to build a room just to house Taylor's size 13 shoe collection.


After the outlet, we set out for the pharmacy in Bellingham to pick up my big order of re-constituted meds. We arrived at 5pm... Imagine my surprise and great displeasure to learn that they had forgotten to fill my order.


Adding to the angst was that we were on a time crunch because we needed to be in Blaine before 6pm to pick up another drug order. And according to Mortimer, Blaine is a 25 minute drive from Bellingham. So we had no choice but to take what the pharmacy could re-constitute in the 20 minute time span we had before we needed to leave for Blaine. I couldn't believe it - after all, a huge part of the reason we combined our trip to Seattle with this needed med pick-up was because it was a 30 day order - which we knew would take at minimum 6 hours to fill. We gave them 3 DAYS to do it! And now, I was lucky to get just a few days worth. Which means another road trip to Bellingham in a week rather than in a month. Seriously, outrageously maddening!

BOO TO YOU, Mr. Pharmacy!

RE-CALCULATE THIS!

August 13, 2008

GOING TO THE ZOO-ZOO-ZOO

YES! I DID IT! I MADE IT TO THE ZOO TODAY!

A lofty aspiration is realized, a dream becomes reality!

A family tradition we have is to head down to the Seattle Zoo each summer. It's a fabulous zoo, well worth the trek. We've created a lot of fabulous memories there. Last summer, I was far too ill to go, so Graham went alone with Parker and Avery - Taylor stayed behind to keep me company.

It was really difficult to be left behind...however, I figured that by next summer this journey would be a distant memory.

Yeah. Right. Little did I know.
I just couldn't bear to miss going again this year. So against all odds, I made it today!


We had a great day.


We explored.


We learned.


We imagined.


We laughed.


And laughed some more.


We discovered how turtles mate.


We trembled.


We nearly passed out from the stench of the elephants.




We escaped.



August 12, 2008

SLEEPLESS IN SEATTLE

LD does weird things to body's ability to regulate its core temperature.
By day, I am always freezing cold.
but by night I turn into an overheating furnace that requires sub zero temperatures to keep my night sweats at bay.

Last night was no exception. I kept waking, drenched in sweat and boiling hot. To me, the room was unbearably hot. I kept nudging Graham awake, pleading with him to crank up the air conditioner. Thankfully, it didn't take much coaxing to get him to do it as he's not particularly crazy about sleeping in a soggy bed.

Finally, by 3am and after 4 climate control adjustments, I managed drift off to sleep...despite the fact that I was still really warm and sweating.

Imagine my surprise to wake up this morning and find my kids all huddled together under a mountain of blankets, Graham asleep in his jacket and Grandma frozen solid.

August 11, 2008

MAKE HAY WHILE THE SUN SHINES

Living with LD has taught me to be spontaneous. I'm slightly anal, like to plan ahead and be prepared, so spontaneity is not a natural inclination for me.

However, when the 'good' days are few and far between, one learns the importance of making hay while the sun shines.

I finally got back on IV treatment in June and it produced an intense and very, long and debilitating herx. For the past 8 weeks, a 'good' day has more or less meant that I was able to move from my bed to the couch.
However, in the past week or so, I've been managing to get in 2-3 'functional' hours each day, so that is why it is Monday nite, and we've just decided to take off to Seattle for a mini family vacation tomorrow morning.

How very spontaneous of me.

We need to head across the border this week to have more of my meds re-constituted. I have to full 30 day rx this time - which means 120 vials of abx need to be attached to 120 bags of saline. It's a tall order to fill in one days time. So we figured it'd be best to combine it with a little get away...Seattle seemed like the place to go as we have a family tradition of heading down to the Woodland Zoo in the Seattle area each summer.

So we've just booked a hotel, it's 11PM and apparently we're leaving for Seattle in the morning.
Suppose I should go pack.
And maybe call Grandma to let her know she's leaving for a surprise vacation too. I'm sure she'll appreciate the 8hr warning.
Now back to packing...
Of course one look at the overflowing laundry basket means only one thing...this unplanned get away means packing will require that I dig through the mile high pile of dirty clothes in order to find the least dirty, least offending articles of clothing to pack.

Who's spontaneously dumb idea was this anyway?

August 10, 2008

RESURRECTING THE FASHIONISTA

Slowly, from the shadows of my Lyme induced fogginess, a speck of my former creative self is emerging. I caught sight of it the other day and immediately pounced on it...

“Hello, old self.” I whisper, “Long time no see. And what is it that I see? Could it be a small glint of imagination staring back at me?” My old self gives a slight nod, as if it is trying to shake off the cobwebs dusting my tired, cranky brain.

“What are you thinking?” I quietly inquire.



“I’m thinking that you are wearing a really ugly piece of netting on your arm.” My old self says with a mischievous little grin.

“Hey, that ugly piece of netting is my PICC line cover. Don’t be so harsh. Don’t knock it. That PICC line is my life line. It’s what’s enabling me to catch this fleeting glimpse of you today."

"I see, but if it is as you say, why don't you give it the respect its surely due?"

While I ponder my old self reflected in the mirror, I can almost hear the squeak as my brain starts to turn the rusted wheel of creativity in my head. "I see your point. It does deserve to be dressed in a more dignified manner."

"Uh, yeah. Most definitely. Besides, it won’t be long until it will allow you to be able to be out in the world a little more. Might be nice to christen your return in a fashion forward manner."

"Oh how wonderful that would be. I miss dressing up and going out. Even more than that, I miss my creative self. Thanks to you, old self, I've got a great idea. I'm even feeling a little giddy. We're going to make Designer Picc Line Covers....



I can visualize them already, animal print, little retro, little saucy, little sassy...

"Ah, hold your horses, have I been gone so long that it is necessary to remind you that along with being very practical and safe, the color black is also very chic and fashion forward."


"Nope, no reminder needed. I am genetically predisposed to wearing black. Now, let's get going! I believe we've got some sewing to do!"

"Absolutely, let's go play. Let's go create, my little fashionista. You have a small window of opportunity with me today. Soon, I will recede into the shadows again. But I'll be back again another day. I promise."


August 9, 2008

MY DEBUT AS A NURSE


This is Peter.


Peter is a fellow Lymie. He was on the Lyme Life Flight with us and as a result has become a really good friend.



He is also my first patient.


Peter is also under the care of DR H in California and recently started on IV Treatment for his LD. Peter was able to follow in my footsteps and get his PICC line put in here in Canada. Apparently, I blazed the trail for him and his surgery went smoothly, unlike the drama and hoopla that surrounded my ordeal. Obviously the surgeons perfected their trade on me and my long suffering arm.

Because our medical treatment is coming from outside of Canada we are unable to access a lot of the medical resources that would otherwise be available to us if we were being treated by an Infectious Disease doctor in Canada. While we have been provided with nursing staff who care for our PICC lines they are 'not allowed' to have anything to do with the administration of our medications.

As a result, we have not been afforded the luxury of being taught how to administer IV medications. Fortunately, the first time I was on IV treatment it was under the care of Infectious Disease in Canada and so i was the recipient of excellent IV training.

The first time around, I was taught how to hook up my lines and administer my IV by home care nurses. For me, having to go solo this time around was a no brainer. However this is all new for Peter. He is an iV newbie. A fish out of water.

So I have become Peter's nurse and his IV educator.

It only took 2 days of teaching before he felt confident enough with his newly acquired skills to go solo in the comfort of his own home.

Either he's a quick study or I'm just a really good teacher.

Obviously, i think it's my great skills that have him already administering IV like a pro.

Of course, he thinks otherwise.

Upon his first solo IV trek at home, he claims that he was able to prep his lines without a single air bubble developing. He's been rubbing that in and has even had the nerve to suggest that i was possibly trying to 'off him' with the few, piddly air bubbles he found in his line during his first tutorial at my house.

Must I remind him that he ran it himself at my house too? I only directed and oversaw the production.

And besides a great teacher lets her students learn from their mistakes.

August 8, 2008

MEET HANNAH

This is Hannah.


She was given to me by my folks for my birthday this year.

Hannah is very special to me.

Not because she's a Royal Doulton collectible. Those that know me well know that collectibles are defined as 'dust collectors' in my house. I don't do dust collectors.

However, Hannah is the exception to my anti clutter rule.

When my folks gave her to me they explained that the purpose of Hannah is 2 fold.

1. She is meant to remind me that God is faithful in fulfilling his promises.

As I persevere in waiting to see God's promise fulfilled, the story of Hannah in the Bible is a great reminder of this. God promised Hannah a son. Hannah had to persevere in trusting God and waited a very, very, very long time before she saw the fulfillment of that promise.
God has promised to give me my health back. I am having to wait a really long time for that to happen.

2. She is meant to inspire me to keep walking this journey with Grace.

The Royal Doulton Hannah is wearing a green dress and has been sculpted in such a way that she looks as if she is gracefully stepping forward. The Biblical Hannah persevered in waiting with grace and strength. My folks told me that like Hannah, I am walking this journey with Grace and Strength.

And one day, she will serve as a beautiful reminder of how I gracefully persevered in waiting for God to heal me.

It meant so much to have my folks affirm me in this unique and creative way. Especially given that there have certainly been many days along this bumpy, windy journey that I sure haven't felt too 'grace-filled'

I will cherish the gift of Hannah forever.

August 7, 2008

RE-ADJUSTING MY DREAMS

It's my birthday.
I've been dreading facing today.
It means I must face the dreams that I had for this my 35th birthday year.

And I had pretty grandiose plans.



I will force myself to write them down. Then face and confront them in all their black and white glory. Ultimately, I must grieve the loss of them today. And then endeavor to keep on believing that dreams do come true...I suppose that sometimes it just takes some creative re-adjustments to make that happen.


1) GO TO NEW YORK OR GREECE

I have always had a dream to go to New York or Greece. The plan was to celebrate my 35th birthday in New York. This year it'll be a success if I can travel 20 minutes down the road to eat dinner in a local restaurant.

So NO New York. Not this birthday anyway. Personally, I'd rather not age a day past 35, so I suppose one day I will eventually get to celebrate my "35th" in New York.

And no, NO Greece either. My whole obsession with Greece came after I watched the movie "Sisterhood of the Traveling Pants". Part of that movie was filmed in Greece and I completely fell in love with Greece. The fact that I simply adore Greek food just adds fuel to my burning desire.

Ironically, the sequel to that movie will be in theaters in time for my birthday. I plan to go. I will watch and I will keep dreaming.


2) RUN A HALF MARATHON


I ran my first 10km race for my 30th birthday. I figured why not go bigger as I age and so the plan was to do a half marathon for my 35th (and no there were never any plans to run a full marathon for my fortieth – I’m not a sucker for punishment)


Ironically, fighting LD has been likened to a running marathon. I suppose I'm in the marathon of my life.
And I wonder if it counts toward anything that while I will not run a half marathon for my 35th, LD will insure that I am guaranteed to FEEL like I have.