BURNETT BREAKERS BASKETBALL BULLETIN

The Burnett Breakers have had a stellar start to their basketball season.

They are 7 wins, 0 losses.
They rounded out the week with a first place finish this weekend at their first tournament of the season.

It has been an unexpectedly exciting week! We have several friends with kids a couple years older than Taylor. At the start of the year, they all told us not to expect Taylor to get a lot of court time this year. Apparently, the grade 12's are often given play priority over the grade 11's. That is just how it goes on senior teams. With that in mind, we headed to Taylor's season opener not sure if we'd see our boy on the court or just have to be content watching him keep the bench warm. We were happy and relieved to notice that the coach gave all of the guys fair play time during their season opener. Taylor had a stand out performance at this game. His efforts and skill did not go unrecognized by the coach and as the week progressed, he was rarely OFF the court.

In fact, on Saturday he was named Team MVP for the week.


He was also awarded the All-Star Trophy for the tournament.


Additionally, the coach let him know that he will be on the 'starting line-up' for all 4 games this week.

We have been so excited and so thrilled for Taylor. It is wonderful to finally have all his hard work and dedication to the game of b-ball rewarded. The last 2 years have been challenging for Taylor, both on and off the court. He has had to persevere through some really tough circumstances and in a lot of ways has put in as much time 'building character' as he has building game skills. It hasn't been easy but he has risen to the challenges he has been confronted with. In doing so, he has learned to stand tall, and carry himself with grace and dignity both on and off the court.

We are incredibly proud of his accomplishments on the court but even more proud of the person he has become.

Way to go, Big Guy! We love you!



Of course, to make sure the boy remains humble, we made him string up the lights on the Christmas tree upon his triumphant return!!

'TIS THE SEASON

'TIS THE SEASON FOR BASKETBALL!

Burnett Breakers -Senior Boys Basketball - 2008/2009

FA LA LA LA LA LA LA LA LA!

Taylor's season opener game was last night! Yahoo! I love basketball! I love watching my boy on the court even more. This year he is playing senior ball. Senior basketball is a whole new level of play. The boys are HUGE - most of the team is over 6 feet tall, well over 6 feet! The games draw big crowds, we have to PAY to watch him play, and his team will be playing 4 games a week plus play in tournaments every weekend. Fun! Exciting! Crazy! Exhausting!

Last year the Burnett Breakers were a force to be reckoned with. They placed first in our city (Richmond). The were the Regional (Vancouver and Districts) Champions. Winning that division qualified them to play in the Provincial Playoffs. They placed 6th in the province overall!

GO BREAKERS GO!

We are anticipating an exciting basketball season for this year! Their team is even stronger and we are expecting big things from them. I have no doubt that they will qualify for the Provincials again this year - which will be very exciting as the Senior Boys Provincial Championships are held in the Agrodome at the PNE! woot woot! Of course, I shouldn't get ahead of myself by making such lofty predictions however they have had a very promising start to their season. Last night, they annihilated their competition 118 to 34.

It's a bird, it's a plane, it's T flying down the court

T in his 'magic zone' - The 3 point line

T about to get his 8th steal of the game

Our whole family loves going to Taylor's games. Avery LOVES to cheer Taylor on. And Parker is an intense fan who often takes the team's loss harder than the guys themselves do. He also enjoys hitting the court at half time where he quickly captures the rapt attention of the crowd with his uncanny ability to "SWISH" shot after shot. My folks, Graham's mom, Dick and Tina (special friends who are family to us) are often in attendance too. Of course, we make them all sit in the "rowdy section" of the bleachers. Graham generally tries to sit some distance from ALL of us as he finds our boisterous cheering a little too loud. I prefer to sit WITH my husband so I honestly try to curb my noise level!

And of course, I do try to reign in my enthusiasm so as not to embarrass my great big 6'1" Baby Boy!

The classic 'Pained Smile'
Aw, mom, not another picture...this is so embarrassing.

I am the proud mom. I am the #1 fan. I am the paparrazi!
I relish every moment and I cherish each time that I am well enough to make it.

GRADING THE FEARLESS FRONT

I had a long chat with DR H last Monday. I finally told him that I have hit the proverbial wall and have given up. And as a result have stopped taking my medications. Obviously he was not at all happy to hear this. I got a bit of a verbal spanking especially when I confessed that I have been off everything for the better part of 3 weeks. However he was also very understanding and assured me that what I am feeling and going through is perfectly normal. He also assured me that I am making progress, that he sees the improvement even if I can't.

My conversation with him certainly helped to bolster my spirits and provide some much needed reassurance that all is not lost. He said he would be 'okay' with me being off my IV meds for the next 3 weeks IF I fully submitted to the treatment plan he prescribed for the interim. That plan includes an intensive 3 week detox protocol and micro doses of a new oral abx to help keep things stabilized. I agreed to do it. I have to. And I will...

...but I am still struggling to move forward with this fight and as a result I have not yet implemented this new game plan. (But I am taking the oral abx needed to treat my PICC Line infection)

Naturally, I've spent a lot of time trying to analyze and understand this precarious predicament I find myself in; this bereft emotional state that has paralyzed my fighting spirit. You can't change what you don't acknowledge. According to Dr Phil anyway! So, I've spent a lot of time over the past 2 weeks journaling and digging deep. It has helped me sort through and face the plethora of emotions that have overwhelmed me. Ultimately I have finally arrived at some conclusions. As it is report card month in Goertzen household, I've taken the liberty of grading myself on the fearless front.

My 'grades' are as follows:

2 D's and 2 F's

DENIAL
DEJA VU

FELIX
FAMILY

DENIAL

My little drug holiday spells capital DENIAL.

I just want to run away and pretend I don't have Lyme Disease anymore. That it doesn't exist and that it hasn't turned my world completely upside down. I want a break from every waking hour being about swallowing pills, knocking back detox cocktails and being tethered to an IV pole for 4 hours a day. And I don't want to endure the excruciating agony of herxing anymore.

Since stopping all my meds, I have been the most functional I have been since August. I've been able to participate in life again. I've been able to spend time with friends. I've gone for coffee with a girlfriend. I've gone for dinner with friends TWICE. I was even able to get out to our beloved care group once. And I got to go to church! The last time I remember being in church was LAST Christmas Eve - Now, mind you, I still haven't made it to church on a Sunday morning BUT I was able to go to the Ladies Christmas Tea at my church.

Believe it or not, my big night out was almost foiled by my PICC line infection - which was diagnosed by my home care nurse 4 hours before I was to be at the tea. Finding out about the infection was very upsetting and scary.

It was also super annoying and irritating...simply because I had made some special festive PICC Line covers for my big night out.

But because of the infection, I had to be be bandaged from elbow to armpit, which meant my festive PICC Line apparel was too small.

Fortunately, I managed to think up a last minute alternative...

I cut the foot off of one of Taylor's dress socks and bedazzled it. Hee hee!

I am so glad that I was able to make it! And not just because I got to wear my makeshift PICC Line Bling. More importantly, I was able to spend the evening with my dear friend Gillian - who was willing to hostess a table just so that me and her could attend. As an added bonus, I even got in a little visit with my cousins, managed to finagle some amazing Biscotti from my Auntie Dot and spend some time with my mom. It was a fabulous evening!

My drug holiday has afforded me the luxury of being with my family. We've been able to do things TOGETHER as a family. To Laugh. To Live. To Nurture. Play board games. Go to the movies. Read bedtime stories. Take the kids to school. Sit at the supper table and eat with my family. Go driving with Taylor (he got his learner's in September). Go on a date with my husband. Decorate my house for Christmas (okay, my mom decorated but I 'supervised' the event. It's awesome! You Rock, Mommo!!) And it even looks like I am going to be well enough to go to Taylor's season opener basketball game tomorrow night. Which is a really, really, hugely important to me to be there for him!

When I am on treatment and herxing, I am not able to do any of these things. In the past 6 months, I have spent more time herxing than not. The better part of September and October the herxing was so intense that I was rarely able to be out of bed. At one point, I could not even walk the short distance from bed to bathroom. Herxing steals any semblance of life away from me and my family and creates absolute chaos.

So as a result of my little drug holiday, I've not been herxing and I have gotten to live some life.

"How's that working out for you?" questions the Dr Phil in my head
"Well, my denial has afforded me the luxury of living some life." I argue with the guru of common sense logic.
"Sure, but Denial is Denial. And Denial is really an asinine way of life." the Dr Phil in my head matter of factly states.
His sensible synopsis rings irritatingly true.

"Oh,Buzz off, you big, bald baffoon!" I screech. "Leave me and my denial alone!"

But the Dr Phil in my head is as bang on as his TV counterpart. At first glance, my little foray into Denial has worked out okay. Yes, I have felt like I had a life again. However, I must admit that the quality of that life is poor and it has been lived on a relatively small scale. I may be functional but I am far from well.

I've come up with a little analogy to better explain it. However, keep in mind, analogies aren't exactly my strong point.

For the most part, on a 'good' day, I feel like I have a really bad flu. On a bad day, my body feels like it has been plowed down by a mack truck and then for good measure, it has slammed into reverse and backed over me too. When I am herxing, it feels as though the truck is parked on top of me. My little drug holiday has meant that the truck drove away. Initially, having the weight of the truck off of me, creates an immediate release of intensity. The relief is so immense, that I feel 'good' in comparison. However the injuries that occurred from the truck plowing over me are still there. With each passing day those injuries are felt more and more. And the fact that they need medical attention becomes glaringly obvious.

DEJA VU

I have re-lived this time of year 3 times over now.
3 times over in the same deplorable state.
Progress so tiny, so microscopic, it is almost impossible to see.

The approach of the Christmas season has nearly done me in this year. I never expected that this fight, this disease would rage on for as long as it has. I never ever in a million years believed that I would still be sick this year. Of course, I never thought it last year or the year before. Last year, my friends, Nancy and Sharon, came over and decorated my house for me. I clearly remember how we all agreed that their help would not be necessary next year because I would be well by then. And I believed that with my every fibre of my being. I even joked that I might just pretend to be sick in order to get them back to decorate as they did such an outstanding job!

It has been a crushing blow to still need the help this year. It has been even more disheartening to feel as though I am NO better than I was last year. Last week, my mom spent the day decorating my house for me. Under my tuteledge, she did an amazing job.:) On top of that she somehow managed to do 3 loads of laundry while she was at it.

Enjoying my beautifully bedecked home has significantly lifted me spirits. And I am looking forward to once again having my girlfriend Sharon magically turn my sad little tree into the same majestic showstopper she created last year. (That is one hardship I can happily endure!)

Each season, each holiday, each birthday, each anniversary that passes me by is a constant taunting reminder of all that I am missing. All that I have lost. Father time is unmoved by my loss and laughingly advances the hands of time with a ferocious speed. Time that is forever lost, impossible to reset or re-live once it is gone. Yes, I believe I will be healed...eventually. But no one can tell me when that will happen. Might be tomorrow. Might be this Christmas or it might be 5 Christmas' from now.

How do I keep moving forward with that staring me in the face?


FELIX

My biopsy results on Felix came back a week and half ago.
Felix was negative for Borrellia.
Which is good thing.
It means that he was not annihilated by bacteria.

This is a good news.
However I found the negative results devastating.
You see, I was counting on Felix to be my motivation to keep fighting.
As crazy as it seems I NEEDED Felix to be positive. In a way I guess that would have finally been like SEEING this invisible demon that wreaks havoc on my body, on my life. And if I can SEE what I am up against, than I can fight it.

As well, I earnestly wanted to be able to send my surgeon a 'positive' result. I was hoping Felix could be used in some small way to broaden the awareness of Lyme in the medical community.

I am sad that this has not been the case.

FAMILY

For 2.5 years, I have fought LD.
I have fought FOR my family. I have fought FOR my husband. I have faught FOR my kids. I have fought FOR my life.

My fight has taken a tremendous toll on all of us.
It has come at a huge cost on all fronts.
Financially, emotionally, physically, mentally.

Right now, all I can see is this fight endlessly and indeterminately waging on.
All I feel is the sacrifice, the loss, the grief, the pain that it produces.
And it feels like it is all for naught.

This fight is too high a price for my family to continue to pay.
Their lives have been irreparably changed because of it. Yes, I know that some of that change is positive but this fight has caused deep battle wounds too. Some of which will leave scars that they will carry with them forever.

And so as painful as it is to admit, this is why I have given up.
I have given up FOR my family.
For the life that they need. For the life that they deserve. For the life that they cannot live so long as this fight exists.

That about sums up my grades for the fearless front.
It's a pretty rock bottom place to be.

How do I reclaim the fight and move forward with a fearless spirit from here?

Interestingly enough the answer has been staring me in the face all along. In fact, deep down, I've known what I need to do all along. I have just been struggling, even reticent to implement it of late.
Over the past several weeks, I kept having the verse from 2 Corinthians 12:10 come to mind:

"Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, than I am strong."

The first part of that verse, the "I am content" part really struck a nerve. In fact, it totally made me mad to be perfectly honest. I DON'T LIKE my situation, I am GRIEVING my situation so the last thing I'm interested in doing is being content or thankful for it. But through past experience, I know that when I praise God regardless of my circumstance, it helps to change my perspective about it.

When I first got sick, God called me to do two things; TRUST HIM and PRAISE HIM. I am learning that the two go hand in hand. How can I claim to Trust Him if I'm not able to Praise Him and vice versa.

I have a little book I read on a daily basis called 31 Days to Praise by Ruth & Warren Myers.
It explains the power of praise this way:

"Even in troubled circumstances, or when God does not choose to work in spectacular ways, praise can help us view our situation through different lenses. it can help produce within us a restful, invigorating inner climate.

Praise brings obvious victory, or it enables us to turn apparent defeats (whether dramatic trials or minor irritations) into victory from God's viewpoint. It tunes out the conflicting voices that shatter our faith and block our love; and it tunes us in to God's guidance so that we can discern what action to take, if any.

True praise is unconditional. It's not an attempt to manipulate God into producing the precise results we hope for. Instead it hleps us accept our situation as it is, whether or not He changes it. Continued praise helps us reach the place where we can say, "Father, I don't want You to remove this problem until you've done all You want to do through it, in me and in others."

Through Praise you focus your attention on God. You acknowledge Him as your source of overcoming power. You begin to look at your problems from a new perspective - you compare them with your mighty, unlimited God. You have a part in making them the prelude to new victories, the raw materials for God's miracles."

Last week, I finally submitted to my calling.
It has been a difficult struggle but I am choosing to Praise Him In This Storm.

Keep Trusting.
Keep Praising.

In doing so, He will give me the strength to reclaim the fight and move forward with a fearless spirit.

The words to the following song are incredibly significant to me. I have spent the past week and a half shedding tears as I have belted out this song at the top of my lungs. It has been amazingly inspiring and freeing...albeit anyone who would have heard my nasal, pitchy 'singing' voice may have found it less than inspiring!

PRAISE YOU IN THIS STORM
http://www.youtube.com/watch?v=1zfm8nzahk8

MY ANTI-ANTIBIOTIC REBELLION HAS BEEN DERAILED

Well it looks like my ANTI-antibiotic rebellion has been derailed.

I have developed an infection at my PICC Line site.
An infection that requires I take antibiotics IMMEDIATELY.
I have NO choice in matter.

How irritatingly ironic!

An infection is nothing to mess with as the PICC line leads directly to my heart. It is serious and can result in detrimental complications (eg sepsis). And if that hasn't scared me enough, then I think the sight of pus oozing out of my incision site is alarming enough to make me start popping pills pronto. Yes, both gross and scary. I am so thankful that my home care nurse Jill, DR A & DR H are all working together to treat this infection. It looks like it probably started sometime in the past 24 hours. So my nurse thinks that we have caught it early which is a very good thing.

Of course, the antibiotic required to treat this infection is a far cry from the IV and oral antibiotics I should be taking to fight my Lyme.
BUT it is an antibiotic nonetheless!

I suppose its a step in the right direction. However, I am not at all happy about it. Although I must admit that I am (grudgingly) chuckling at God's sense of humor. He knows what is best for me and what I need. Obviously I need to be on antibiotics.

I guess He figured he'd get me back on some form of antibiotics one way or the other.

Will wonders ever cease to amaze me.

THE AGONY OF THE FEARLESS FRONT

But He said to me, My grace, my favor, loving-kindness and mercy is enough for you. It is sufficient against any danger and enables you to bear the trouble manfully; for My strength and power are made perfect, fulfilled and completed, and show themselves most effective in your weakness.

- 2 Corinthians 12:9 (Amplified Bible)

It has been awhile since I've done a Fearless Front entry.

Obviously most of September and October I was too sick to write. Despite the fact that I have been well enough to write in the past 2 weeks, I have had some serious 'Blogger's Block'. Generally speaking, getting my thoughts out on paper comes easily but that is not currently happening. My last couple of entries have been incredibly difficult to write; partly because my mind and my heart are so rife with turmoil that my thoughts just topple out in fragmented sentences that don't make a lot of sense. The 5 unpublished, half-finished entries sitting in my outbox are probably proof enough of that. But more than anything, it is because I am struggling to give myself permission to give voice to the wretchedness that has become my inability to keep fighting.

Deep down inside me, in the inner-most recesses of my soul, I know that God is working to bring about the healing that He has promised me. I trust Him. I believe Him. He is the solid foundation in which I base my life. So it bothers me immensely to be in the desolate, empty place I now find myself in.

However, it is important to me to remain authentic and transparent in my journey. That means facing and acknowledging that I am in a time and a place where the hopelessness has overwhelmed me; that the suffering has become too much to bear; that the intensity of the fight has so completely engulfed me that the thought of enduring another moment of it is so traumatic that it has paralyzed me with fear.

Yes, I am in the midst of the darkest night of my soul. And it would be easier to try and pretend it doesn't exist or ignore it. I would like nothing more than to avoid giving a voice to the disparity because I know that once this time has passed, it will be impossible to fully recall the intensity of the battle. The mind has a funny, blessed way of blocking out the memory of trauma in order to protect itself. I don't want to be in this moment, feel in this moment, live in this moment, let alone write about it. But I write so that when I look back on this journey, I can never think for one single moment that I survived it based on my own strength, tenacity, grit, courage or sheer determination. No, for me acknowledging my deepest, darkest moments serves to remind me that I do not have what it takes to do this in my own power. It is indeed God that carries me through. For it is in recognizing the weakness of my humanity that His power, His strength, His glory is revealed.


PS I want to thank each one of you who has taken the time to call me or message/email me. I am profoundly touched and humbled by your support, love and encouragement.

THE TUG OF WAR

i am at the lowest point i have ever been.

i am so tired. so weak. so overwhelmed. so broken.
i am consumed with grief over all that has been lost
this fight, this suffering just goes on and on and on and on.
and I just can't take it anymore

i am physically, mentally and emotionally drained.
i am totally wiped out.
i have not an ounce of fight left in me.

i have quit taking all my meds.
i stopped a week ago.
i have jokingly referred to it as being my self-imposed drug holiday
but the brutal truth is that

i have given up.
i do not have the courage to go on.
i do not have the strength to fight.
i do not have the will to move forward.

right now stopping treatment feels like the lesser of two evils.
i hurt so bad. but i hurt more when i take my meds.
at least without treatment there is no horrendous herxing to endure,
and no expectation that i will get better

and so i have come to a grinding, soul shattering stand still.
i am caught in a deadlock.
a stalemate raging inside me.
a tug of war between the voice of God and the voice of doubt.

i am holding on to what God has said.
he has promised me healing,
even though the when, where and how remain a silent mystery
he has called me to Trust Him,
even though it appears that there is no end in sight

But the reality is that
i am struggling to silence the voice in my head that is screaming,
the fight is futile.
there is no cure.
the voice of doubt that shrieks,
treatment is pointless
there is no progress.

19 months of treatment and not a single day, a single hour that i have been symptom free.
19 months of treatment and still no end in sight.

Sounds like, Looks like, feels like a deafening roar of confirmation that i am fighting a losing battle.

This voice of doubt is a blood thirsty banshee
and it is threatening to crowd out my ability to hear the voice of God.

i am in a dark and desperate tug of war
his is the voice i need to hear
his is the voice i need to listen to
his is the voice of truth

i heard this song on the radio yesterday and it is my gut wrenching cry for this tug of war that i am in:

http://www.youtube.com/watch?v=UWB-uqfBGMY&feature=related


lord, give me the courage to believe your voice of truth
lord, give me the strength to fight
lord, give me the will to survive

PLEASE PRAY FOR FELIX

Who's Felix?
Felix is my gall bladder.
Yes, I named my gall bladder.

And no, I haven't completely lost my mind. (Altho' that is often up for debate)

And yes, I am aware that Felix is no longer residing in my body.

However, Felix needs prayer. Or rather I need prayer for my conflicted feelings about Felix.

And no, I am not having separation anxiety issues.

You see, my little buddy Felix has been sucked out of my navel and Fed Exed to California.

He is currently residing in a petri dish in the Igenex Labs where they are ascertaining his ability to bear forth Borrelia. (The name of the bacteria that causes LD)

When my surgeon Dr F consulted with Dr H about my need for surgery, the decision was made to have my gall bladder biopsied for Borrelia.

Part of me is very anxious to have Borrelia found in Felix.
Part of me doesn't want to deal with what that means.

I am conflicted.
Felix was an organ I could afford to lose...most of my other organs tend to be far more vital.
However!
It would also be a great medical coupe to have a positive result found.

Even my surgeon Dr F is very curious about what the results will be and has requested a copy be sent to him, stating, "It's not really any of my business, but just out of personal curiousity I would like to see the results when they are in."

I am not sure how long it will take to get the results.

I am worried that Felix is not behaving himself.
Or worse what if the lab has misplaced him?

Waiting, worrying, praying for Felix.

Ironic, that he can still make my tummy hurt.

SAYING GOOD-BYE TO A WARRIOR

Not all wars are won in the earthly realm.

It is with great sadness that I share with you the news of the passing of my friend Tracie's sister, Leslie Wermers.

Leslie died of complications from Lyme Disease on November 2, 2008 at the age of 41.


Leslie Rae Wermers
07-07-1967 to 11-02-2008

Loving Sister; Daughter; Life Partner; Jayder's Lessie; Aunt; Ralphie and Dudley's Mommy; Advocate and Cherished Friend

You've touched so many lives in so many wonderful ways

Tracie and her sister Leslie are the co-founders of the Minnesota Lymefighters Advocacy. They created Lymefighters in order to educate, guide and support others in fighting the battle against Lyme Disease. Both Tracie and Leslie were diagnosed with late stage Lyme Disease and as such made it their life purpose to:

"Fight Lyme together and to help others in their fight"

Tracie and Leslie aka The Lymefighters

Leslie and Tracie were instrumental in helping us navigate through the craziness that surrounded our first, frenzied trip to the states with the McQuhae family. Seeking and arranging medical treatment out of country would have been an overwhelming task and logistical nightmare without the help we received them.

Over the past 6 months,Tracie and I have stayed in touch. From the get go, we had an immediate sense of connection and have since found that we have much more than just Lyme in common. Tracie's help and support has been a God send to me. Her strength has given me courage and her sense of humor makes me laugh in spite of myself and LD. (Flying sans clothes will haunt me forever!)

Tracie has often remarked that both her and Leslie felt honored to be able to help LD patients. They are remarkable women whose life and service are a shining example of their passion and purpose. I am blessed to have been on the receiving end of their amazing support and help.

It is with a heavy heart and great sadness that I grieve with Tracie and her family...their loss is immense...Tracie has lost her best friend, her sister, her partner in Lyme.

And we have all lost a great Lyme warrior and advocate.

Please take a moment to watch the Under Our Skin memorial footage in honor of Leslie:

http://ca.youtube.com/watch?v=NVsfGvZt-LA

You did better than okay, Leslie.
You did great. And I am but one among many whose life you saved.

Below is the link to the 5 min. trailer for the documentary Under Our Skin.

http://ca.youtube.com/watch?v=sxWgS0XLVqw&feature=channel


The following is some excerpts from:

'Requiem of a Lyme Sufferer and Selfless Patient Advocate'
written by my friend Bill M

It was with a great deal of sadness that I heard of Leslie Wermer’s sudden demise, having lost the battle with her Lyme Disease complications.

I only came to know her in the spring of this year when becoming involved in helping the McQuhae family, but quickly held her in high regard when seeing her selflessness in respect to helping others with Lyme who were in desperate straits.

Despite suffering badly with Lyme & coinfections herself, and while ignoring the stress to her advancing condition, Leslie selflessly dedicated herself to helping others desperately ill with TBIDs in any way, and as best she could. In the last few months she had trouble maintaining her advocacy for others.

Along with her sister Tracie Schissel, they were instrumental in creating
www.lymefighters.org
an advocacy site, whose sole intention is to help others with Lyme and promote awareness. Joining with Judith Weeg of Iowa Lyme who began the LDUC (Lyme Disease United Coalition), they drew together numerous local support groups under the coalition.

In a June ’08 article in the Brainerd Dispatch, it was stated that Lymefighters had assisted some 1,200 individuals throughout the country, and since, it has increased to over 1,500 (can add a few Canadians now as well).

http://www.brainerddispatch.com/ystories/061808/new_20080618045.shtml

For those of you who don’t know Lymefighters, they perform Lyme Patient advocacy, and are dedicated to promoting awareness in every way they can. Having no time for the negativity and politics sometimes associated with major advocacy sites and their forums, they take a direct, hands-on approach to just help Lyme patients, and getting awareness out to the public and medical professionals. Their site has no forum, and they aren’t affiliated with any major advocacy groups. They simply find persons who are in the most desperate situations and help them through many forms of assistance - financially when they can arrange it, medications from charities, locating LLMDs, arranging payment terms with them for patients, finding housing, assisting with disability/insurance applications, and so much more!

You may have met Leslie and Tracie at the 2007 and 2008 Scientific Sessions of the ILADS conference. Leslie was the tall, thin brunette, who collected the question cards and worked at registration. She was in the Under our Skin movie, ironically, shown at the memorial service for another Lyme victim.

Besides a great deal of time spent in patient advocacy, Tracie runs a local support group, appears in radio interviews regularly, is involved with LDUC to bring local support groups together, and does many LD presentations (often to large groups). Although very focused on Lyme Advocacy, she has a great sense of humor, as did sister Leslie. I truly hope the stress of Leslie’s loss won’t bring Tracie down – in health or spirit. Our hearts and prayers go out to sister, Tracie Schissel. She must be encouraged to go easy for a while and monitor her own Lyme condition. The world couldn’t afford the loss of one of these sisters... Hopefully members of Tracie’s support group will help take up the load.

Simply said, Leslie and sister Tracie exemplify what a true advocate should be!

I know there are great many Lyme patients who are extremely thankful to these sisters, and who would be far worse off without having had their assistance.

Leslie will be sorely missed - not only by patients she’s aided, but by all who know and love her.

Donations may be made in her memory at www.lymefighters.org

THE WAR RAGES ON

And you have bereaved my soul and cast it off far from peace;
I have forgotten what good and happiness are.
And I say, Perished is my strength and my expectation from the Lord.
Oh Lord, the thought of my affliction and my misery, my wandering and my outcast state, is bitter beyond words;
My soul has them continually in remembrance and is bowed down with in me as I grieve over my loss.

But this I recall and therefore;
I dare to have hope and expectation.
It is because of the Lord's mercy and loving-kindness that we are not consumed;
because His compassions fail not.
They are new every morning; great and abundant is Your stability and faithfulness.
The Lord is my portion or my share, says my inner self; therefore I will hope in Him and wait expectantly for Him.
- Lamentations 3:15-24


I am held captive in an endless war.

My body is broken. Irreparably broken. Or so it feels. It has been hijacked by an unseen terrorist that stealthily and freely flows through my body launching it's unrelenting, unending assaults. Barbaric attacks that strip me of my ability to move, to think, to work, to play, to breathe, to live, to be.

The war wages on, and I am left hanging on by a thread. A small, tiny, microscopic thread. My earthly perspective lends itself to a limited a view. I see no light on the horizon or beyond. I am held hostage with in the 4 walls of my home, confined, condemned to merely exist...a shadow on the outer fringes of life. Truly living life has been gone so long, I can no longer remember what it was, what it felt like, what I did...and no longer is a 'good' moment, a 'good' hour, a 'good' day long enough to refresh my memory, long enough to restore stability to the chaos, long enough to remember what it means to just be me

The war violently rages on. The endless days have fallen into never ending weeks, months, years and nothing changes. Nothing but the great, vast unknown endlessly stretching before me. Nothing but the same vicious, relentless cycle to face day in and day out. I am barely able to cling to that unrequited promise of healing. It is my hope but it has been reduced to the meekest, weakest whisper as this war has mercilessly snuffed it out again and again.

The only note worthy change I bear witness to is the leaves on the tree outside my window. Just beyond my reach its seasonal cycle serves as a taunting, mocking reminder that life goes on, with or without me. 3 times over, I have watched the leaves on that tree go from lush green to vibrant red, orange and yellow to the bare cold branches I now see, reflecting the barrenness I feel.

Feel? Feel what? Do I even feel anymore?My body is fragile. My mind is tormented. I am weak. I want to let go. I am alone. I am lost. And I am numb to it all. Numb to the suffering. Numb to the pain. Numb to the grief. Numb to the loss. Numb to undulating isolation. Numb to the silence that crowds out my thoughts.

Numb to this war that wages within me.
Yet part of me intrinsically knows that there is hope beyond the despair.
That hidden from my sight, the Master is at work
His power, His love, His strength fail not.

I am at war with an enemy that doesn't fight fair.
And I have fought hard not to become a casualty of it.
I have been to the cusp of victory a hundred times over
And a hundred times over it has been ripped from my grasp
Over and over and over again.

Lyme wants all, it takes all
And I am at war with this beast
It is a screaming, mocking demon within
It unleashes its all consuming fury on my broken body
It spews forth its venomous poison into my weary mind
And now in relentless, dogged pursuit
it rages forward to lay claim to my soul.

And I am spinning and staggering under the weight of the fight
Shedding blood, sweat and tears
to keep it from stealing my soul
let it have my body, my mind but not steal my soul
Please, I beg,
Not my faith, my reason for being.
Not my hope, my essence of living.
Without faith, I have nothing
Without hope, I would be consumed.

Somehow, somewhere, someday this battle will be brought to an end.

I surrender not to the war but to the Master and His plan.

I still dare to believe, to have faith, to have hope