STATE OF FLUX

Oh Joy! The flu! Again!
I've got another piper down for the count.
Son #2, Parker, has now come down with the flu. Poor little guy is exploding from all orifices.

And me?
Well, let's just say i'm on high alert and carefully watching for any signs that i am starting to FLURX...

FLURX - [Floo-herx] {floo-HERX}
(est. March 2009; recently discovered phenom occuring in humans)

• a combination of the flu and a herxheimer reaction (aka Herx)

TO FLURX

• to simultaneously exhibit signs and symptoms of an active bout of both the flu and a herxheimer reaction

FLURXING

• to be actively engaged in the process of surviving the effects of a flurx

FLUX - [fluks]

• continuous change or instability
• life with lyme
  

STATE OF FLUX

• a state of uncertainty or instability
• to constantly wonder whether one is experiencing a herx or a flurx
  

I've just spent this last week herxing.
legitmately herxing.
at least i'm pretty sure i've been dealing with a real herx and not a flurx.

at least i think
but i'm not sure
maybe or maybe not

one thing i know for sure
i'm most definitely in a state of flux

TRACKING DOWN ALINIA

the road i have travelled thus far on this journey has required me to take a crash course in hands on medical care. whether it is navigating the medical system or learning the ludicrous terminology associated with pharmaceuticals; learning to reconstitute and administer IV meds or self inject; learning to know whether or not the symptoms you are experiencing warrant a trip to the ER or learning the difference between faux herx or real herx; yup, you name it, i've either been there, done that or at the very least i've obsessively read about it.

to be frank, for all that, i think i deserve a title! nothing major. just a few initials to punctuate the end of my name with. for all the medical lingo and care i've had to take on over the past 3 years, not to mention the fact that the word herx aka jarisch herxiemer is even in my vocab, i figure i've quite easily earned, at the very least, an honory RN after my name.

and as easily as i've earned an honorary RN after my name, my dear husband surely has earned the title of PI. Yup for all the sleuthing it takes him to track down my various medications, supplements and IV supplies he most deservedly could add "Private Investigator" to his resume.

par for the course when your medical care is coming from a different country than the one you reside in. more often than not, it not only takes countless hours but even days or weeks to finally get suppliers nailed down and prescriptions filled.

alinia has been the latest mystery drug we've had to track down.

when i saw DR H in january he attributed my low scoring neurological assessments along with my blurred vision, shortness of breath episodes and a sudden increase in migraines to a raging relapse of babs. his clinical evaluation of me, made it clear the babs infection is deeply entrenched in my brain and building strength and resistence to treatment. So, in addition to the IV Rocephin i am on to fight my lyme, DR H immediately started me on the IV form of zithromax and prescribed the Alinia.

(Lyme is a bacterial infection whereas Babesia is a protozoanal infection. my babs infection attacks my eye sight, lungs and hearing in addition to being the causative of my neuropathies, mood swings, headaches, chills and nite sweats. learn more about babesia here- http://en.wikipedia.org/wiki/Babesia)

Bottom line, we have to gain control of the babs. Babs can be fatal. It is do or die.

upon our return from seeing DR H in SF in January, i immediately met with my Canadian doctor, DR A, to get DR H's American prescription for the alinia 'converted' to a Canadian prescription. Doing this allows me to fill my prescriptions in Canada which in turn means that they are then (generally speaking) covered by insurance. DR A was in agreement with the DR H's latest treatment plan however he was pretty sure that Alinia is not a drug available in Canada. Nonetheless, and hoping for the best, he still wrote the prescription and off I went to the pharmacy to fill it.

dead end. alinia is not available in canada
which leaves me with 2 options
either find a suitable alternative or fill the prescription in the USA and pay out of pocket for it.

we've run into this problem before and DR H has often been able to prescribe an adequate or close to equal alternative. No such luck with Alinia. There is no 'Canadian' alternative or option left for me.
the first line of defense against babs is an oral course of mepron (an antiprotozonal drug aka atovaquone) and the oral form of zithromax (an antibiotic). these meds are available in Canada. however, i've already done this combo. i did make great progress while on this combo but it did not eradicate the infection. therefore, the use of alinia is warranted and necessary. And DR H is adamant that I need to be on this drug.

so we've had to go with option 2. fill prescription in the USA and pay out of pocket for it.
to the tune of $1500 per month. duration unknown. gulp.
the clincher is that alinia is made in canada...add insult to injury it is manufatured in a lab that is located in a suburb of the very city we live in!

what to do?
laugh or cry
do both
then bite the bullet
hope the mastercard is not declined
trust God for His provision

we did try submitting our receipts to insurance. we were hoping they would cover the alinia because i had a canadian prescription for it. however, we recieved word this week that our claim had been denied. not sure how we are going to float this. we're pretty much financially maxed out. for the time being, in order to make wiggle room, we have had to cut back on some other aspects of my treatment. namely my detox regime.

i'm trying hard to remain upbeat, keep trusting God for his provision and not be completely overwhelmed. after all, God is in control. and, you know, things could be worse. i have a lot to be grateful for.

and there is always something to laugh about.

this 'saying' was on the packing slip that accompanied my first shipment of alinia....

"Your prescription has been taken from our prescription shelves with sterilized contamination-free gloves and placed onto a satin pillow. A team of 50 employees inspected your prescription and polished it to make sure it was i the best possible condition beforemailing. Our packing specialist from Japan lit a candle and a hush fell over the crowd as she put your prescription into the finest lined box that money can buy we all had a wonderful celebration afterwards and the whole party marched down the street to the post office where we all waved 'Bon Voyage! to your package. Thank you for your order."

Seriously. No joke. That little note came with my multi-million dollar bottle of Alinia.

If I didn't know better I'd think my husband worked for this pharmacy.

RE-ASSESSING MY FAUX HERX

Turns out my faux herx maybe wasn't so faux after all. Yes, quite possibly my faux herx was a combination of one part faux, one part real and one part flu. At least that is the latest theory anyway. Confused yet? Yup. Me too. C'est la vie...avec lyme!

Let me try to sort through the confusion. I originally thought my faux herx was actually a real herx. Easy enough to assume because I had an excerbation of my 'garden variety' or 'my standard' herxing symptoms during the time that I generally begin my herxing cycle.

However, I also had some additional symptoms crop up that were not things I normally deal with. While it was a little of the ordinary, I didn't initially think too much of it because living with lyme is generally wierd and rarely explainable.

Additionally, this herx was incredibly bad. It was similar to the herxes I endured way back when I first started treatment. I was scarily ill again. As in back in that place where the pain is so bad that I flopped between either thinking I was dying or wishing for the release of death. Yup. It was that bad. Again. Graham has since admitted that it was so bad that he pretty much gave up hope. I managed to stay a knot above him on the proverbial hope rope this time round. Partly because I had been expecting this herx to be a doozer. Why per say?- Well, during my in office appointment with DR H in January,we (as in DR H and I ) noticed an interesting pattern with my herxing - aside from that they occur every 4 weeks, there seems to be an extra bad flare every second month. Of course this herx fell into that second month bad cycle category.

So, yes, I expected it to be bad. But not as bad as it got. 5 days into it was when we discovered that I had been mistakenly mixing one of my IV meds into the bags of sterile water. Sterile water is not a compound that should be transfused into your bloodstream. Once this was discovered some of my odder than normal symptoms could be somewhat explained. (It has taken a full 3 weeks for these symptoms to resolve and for me to feel like I have regained my 'normal lyme equilibrium'.)

As soon as we discovered that I had been inadvertently attempting to internally drown myself, lab testing was immediately done to check my liver function, electrolyte levels and blood counts.

Last week, I saw my Canadian doctor, DR A to go over the results of this blood work. My lab results revealed elevated liver enzymes. Makes sense as it was having to act as a water filter, so to speak. Interestingly my WBC (White Blood Cell) count came back pretty low. Hmmm. The low WBC piqued DR A's interest. My WBC always tends to be on the low side however this was a fairly significant drop. A low WBC usually is indicative of some sort of viral infection.

Hmm.
DR A asked me if anyone in my family had been sick recently.
Affirmative. Taylor had been home on MY convalescing couch sicker than a dog with a nasty flu during the week of my not so faux or maybe faux herx.
"That's fantastic." replied the (usually) incredibly compassionate DR A.
I gave him an inquisitive sideways glance
"I mean, bad for Taylor." he sheepishly responded, "BUT I think you maybe had a touch of the flu too. AND that would be a good thing!"
What? NO WAY! NOT POSSIBLE! I NEVER get sick. Aside from having Lyme, that is."

Since when is getting the flu seen as a 'good thing'?
Only in the twisted world of lyme.

Lyme suppresses the immune system so that the body does not have the sensors to sense foreign invaders and it lacks the juice to fight off any sort of infection. One of the goals of my treatment is to 'turn my immune system back on... therefore getting a touch of the flu is actually a really good thing. It means my immune system is starting to work again.

Yup. Getting the flu turns me on.

So, my faux herx has been re-assessed.
One part faux, one part real, one part flu.

A WORLD OF SUPPORT!

Just wanted to drop in with a big thank you to all of you who responded to my last post; The Good, The Bad and The Ugly. Amazingly enough, support and words of encouragement have come in from all over the world. Judging from the support and feedback I have received, it sounds like it struck a chord and resonated deeply with many folks.

Thank you to those of you who have shared your own pain and stories about this difficult topic. Time and time again, I have been told that so many of you could relate to my feelings; that I have given a voice to your pain and in doing so have helped you to not feel so alone in this fight. It was a struggle to articulate my feelings...only took 6 weeks of blood, sweat and tears to write! Hearing that others not only can identify with my pain, but that they have found comfort in my words, has been a great comfort to me. It has also brought a sense of reassurance and value to my own pain and grief.

I have been so appreciative of all the emails and phone calls. My mom and my husband have also forwarded on to me numerous messages of love and support from well wishers at our church. All reminders that I have some pretty amazing prayer warriors in my corner.

Thank you. It has meant the world to me.

Last, but surely not least, I wanted to say thank you to a special lady, Renee, who posted a link to the good, bad and ugly on her blog. Renee's Reflections on living with LD can be found @ http://lymeliving.blogspot.com/

Thank you, Renee - I am honored that you felt that the ramblings of my heart were valuable enough to share with your friends and fellow bloggers.

THE GOOD, THE BAD & THE UGLY

"If you don't have anything nice to say, don't say anything at all."

i cannot believe an entire month (plus some) has gone by and i have only managed to post one entry. it certainly has not been for lack of things to blog about. rather i have been hindered by an onslaught of emotions that have hampered my ability to blog. i have been bombarded with some ugly feelings and i suppose they have left me feeling so raw that it has just been too painful and too overwhelming to face them in black and white. ugly feelings are exhausting and difficult to sort through, let alone write about for all the world to read. however, i want to be authentic and real. my purpose in blogging is so that when i reach the end of this fight, i will remember all of it. the good, the bad and the ugly.

lyme is ugly.

sometimes it is hard to ascertain what is the ugliest part of it.
is it living with a disease that is best described as a 'living death' but is by and large invisible to the outside world?
is it the scrutiny, ignorance and lack of support you face at the hands of medical professionals?
is it the political roadblocks that force one out of their own country in order to get proper treatment?
is it the isolation and loneliness one faces daily?
is it the immense financial burden that accompanies the fight to regain one's health?
is it the emotional toll it takes on the patient and their family?
or that even at the best of times, the stability of your family hangs in the balance?

yes, lyme is ugly

from time to time, i find myself completely overwhelmed by the ugliness of it all. the challenge to keep Trusting in the face of it all feels like an impossible mountain of faith to scale. when my ability to Trust is diminished, the ugliness feels even uglier. it feels bad. really bad. big and bad. i've spent the better part of this past month shaking down these demons.

i returned from our last trip to SF to see DR H super discouraged and depressed. my depression was due in part to my babesia infection but a huge contributing factor has to do with the natural rhythm of emotions that one faces when living with a chronic illness. i really had a huge need for the emotional support of my friends upon my return from SF but this need went unmet. at times, i feel like i have been abandoned by my friends or that they don't care. this certainly intensifies my sense of loneliness and isolation. lyme is a tricky disease to live with and it is a difficult one for others to understand. i get that it is not possible to 'get it' unless you are living it. therefore, i don't expect those outside my world to 'get it' but sometimes i wonder if they are unable or just unwilling to accept that my inabilities are not a choice.

i am hard pressed to nurture my friendships. most of my energy goes into fighting lyme. i eat, sleep and breathe it. what little is left after that is put into family. at the end of the day there is not often anything left to give. most of the time, i am so focused on just surviving another day that it is easy to forget that there is life outside of the world of lyme. when lyme gives me some breathing room and i'm able to temporarily surface, it is then that i realize that life has gone on without me. and so have some of my friends. often i am amazed that any of my friendships have even survived the insanity of this disease. not all of them have or will survive this journey. i understand that but it still hurts.

in so many ways, we have been blessed with an incredible amount of support, care and encouragement. friends and strangers alike have been amazing. therefore i feel selfish and self absorbed to even admit that i struggle with feelings of abandonment and isolation. or that i feel like i am penalized or left out because of my inabilities. or admit that sometimes i feel like our network of support is waning. i know that people care. i totally understand that folks are growing weary with my never ending battle. sheesh, i'm sick and tired of it too! i recognize that everyone has their own pain, their own mountains to scale. honestly, i have been blown away time and time again at the outpouring of love and support that we have received. i certainly don't expect or think that folks should help to shoulder our burden. however if i'm not expecting anything than how can i be disappointed or hurt when it doesn't happen? how does one be in need yet not be needy? that is a tricky slope to traverse. the only way i have found to navigate it is to look to God to meet all my needs. he is the only friend that is equipped to get it. i can expect great things from him because he can do great things. he has never let me down. he has never left me alone.

lately, avery and i have had many discussions about loneliness. they most frequently occur around bedtime. after all, bedtime is a lonely affair for a 5 year old. i often find myself reminding her that she is never alone. that jesus is her friend and he is always with her. not long ago, she responded to that with an eye rolling sigh, " I know that, momma but sometimes i just want a friend that i can see and hug." Oh boy, baby, i totally understand.

the need for human connection is great. but my Trust journey is about learning to seek Jesus first. sometimes that comes easy. sometimes it is a chore. always it is a choice. i desire to do that. i endeavor to make that choice on a daily basis.

lyme is bad
dr h calls it a bad ass disease. excuse the french. i'm just quoting my doc's unconventional medical jargon!

i have been forced to scale mountains, jump through hoops and fight every step of the way from diagnosis to treatment. it has been a challenge to learn to stand my ground and advocate for myself yet not cling to the anger i feel at being so unjustly treated. or the outrage i feel to know that there are so many people with lyme whose lives are being unnecessarily destroyed and devastated because of the political controversy that surrounds this disease. i have had to be vigilant in guarding my heart against the anger and outrage that journeying thru this process has entailed. the last thing i want to do is to let anger, resentment or bitterness fester. it is a learning curve. it is a challenge. easier said than done. yet the last thing i want is to be left with the 'disease of bitterness' once i have healed from lyme. i am not willing to trade one disease for another.

the one area that we felt had been mercifully untainted by the political and medical controversy surrounding LD was the amazing care i have received from my home care nurses. it was also one of the few areas of my treatment that we do not have to PAY or be responsible for. we have been incredibly grateful and appreciative of this.

unfortunately, over the past couple of months, we have been pushed to take on more responsibility in regards to my picc line care. we were not comfortable with what we were being asked to do. our stress level is through the roof. we are responsible in every way for most of my care. the care of my picc line was the one thing that was being done FOR us. one thing we did not have to do ourselves.

when we were approached to take over part of this care, we just didn't feel like we could add one more thing to our plate. not right now anyway. our response was "no to now. but not no to forever." however it continued to be asked of us over and over. eventually it became more stressful to keep saying 'no' and so we relented to taking on yet another aspect of my care.

over the last couple of weeks, some additional issues have come into play in regards to my picc line care. it has been insinuated that i could 'lose' my picc line care and that maybe it would be best if we met with nursing management to explain the treatment aspect of my disease. it has been very upsetting to deal with this. ultimately it has culminated in leaving me feeling as though my picc line care is threatened.

what i am finding most upsetting about the last several weeks of picc line drama is the fact that I feel like i am having to once again defend my diagnosis and treatment. it has been a hard place to find myself in. especially when it is coming from caregivers i felt where in my corner. i have been incredibly grateful for their care and support. i trusted them. i bonded with them. it is easy to understand how that emotional attachment has formed. over the past year, they have been an empathetic ear and emotional support at a time when i so often find myself isolated and alone and feeling like no one understands. aside from family, they have often been my only connection with the outside world for weeks at a time. they have cared for me during my most vulnerable and dependent moments. the times when i have been bedridden, barely able to see, speak or breath.

they have been so incredible and such a huge part of our lives for over a year now. what is going on now doesn't change that but it has left me wondering if my trust in them was misplaced.


lyme is good
huh?
come again!

good can come from lyme
ok
that i'm more comfortable with

between my last Real Herx and my Faux Herx, i have managed to log in some really amazing moments. even clocked in with a few consecutive 'good hours' here and there. lyme has taught us to never take the good times for granted. enjoy every moment. and when your inabilities momentarily abate, jump on the opportunity to let loose and live.

and that is exactly what i have been able to do


creating special moments to celebrate fun occasions is something i really miss being able to do for my family. i was thrilled to be able to pull off a special valentine's day dinner for my family. it wasn't grandiose by any stretch of the imagination but it was special nonetheless.

i did it. all of it. even cooked dinner. all by myself.

and my family let loose and lived by eating it!

Avery lost her first tooth...

Actually, this was the second tooth she has lost...
however it was her first 'official' loss as the first one was the result of her mouth coming in contact with the foot of a table when she was 2.

The end of Taylor's basketball season coincided with the week of my faux herx. i was very ill and spent the intermissions lying down but i was grateful to be able to make it. unfortunately the playoffs also coincided with flu season this year. the whole team came down with the flu. they were one game away from qualifying for the provincials when the flu knocked them out of contention.


pre-game, locker room barfing made a very strong team weak and lethargic. they lost the game. it was an extremely tough loss for a team that is not used to losing and was ranked #2 in our district. The boys had a gold season so to not qualify for the provinicials was a super big dissapointment for them. fortunately, i was able to make it to what turned out to be their last game of the season. it was good that i could be there.

Avery is Taylor's biggest littlest fan!

we try to impress upon her the importance of cheering on the WHOLE TEAM

however she is stalwart in her allegiance to Taylor

i was incredibly excited this past month to be strong enough and well enough to take Parker and Avery to the aquarium.




the aquarium has always been a family favorite and we have all missed going. we had a really awesome day. it was a very much needed time of bonding. a day where we were able to forget about lyme and being sick...

a day where we could just be normal....

um, well, our own special breed of normal!

it has been a wonderful gift to have some good times...even in the midst of the bad and the ugly.