March 10, 2009


"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
come again!

good can come from lyme
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.


Renee said...

Wow. I am amazed at the energy you could put into this post and feel very blessed to be able to share with you, your thoughts and feelings expressed in the written word. I mean that. I hope it is okay with you that I post a link in my blog for others to read what you have is very raw, real, educational, and just plain important.
You have expressed what I often want to say and and you have expressed it so clearly....
I am thinking I will do my own posting on the good, bad, and the ugly...each of us with Lyme and other devasting illesses have our own stories to tell.
You are in my thoughts and prayers as you walk up this rocky trail of Lyme treatment. It is exhausting and isolating, and we need all the encouragement and support we can get.

Jozephine said...

Hi, I followed Renee's link. Thanks for being so open. Jo

Thandi said...

I hate posting my own comments cos then it feels like I'm belittling the owner's but in a small way, I can relate.No, I 'only' have celiac disease but it's a condition that others don't understand and if I accidentally get it in my system, no-one understands/gets the symptoms.Nor do they udnerstand that ingesting it is sending me closer to possible death.Including my dentist who has chided me for the weak state of my teeth..Anyway. Your situation is MUCH worse and I understand what you're saying.Now you've prompted me to post something about celiac on my blog-but not today, LOL.Please be strong. I'm praying for you.