January 26, 2014

THESE TWO THINGS


i have spent the last 3 months in a desperate and lonely struggle for my body and mind. it is as if the ground opened up and swallowed me whole...and i have had no desire, inclination or ability to claw my way out of the pit. and i'm not out of it yet. not.even.close.

there have been no postings since november 4 because it has been bad. very bad. it all got a lot worse immediately following that last post.

it all just feels impossible to explain.


november and december passed by in a blur 
both sparky and i came down with pneumonia
that stretched on for 6 weeks

followed closely 
by a 4 week bout of strep 

my tremor and twitching attacks that i blogged about in my last post (started in october) are still ongoing
and
so is the never ending bouts of daily vomiting.

the bout of pneumonia exacerbated and significantly increased my vomiting and even though the pneumonia has now resolved, the vomiting has not decreased.

there appears to be no end in sight. 

my medical team is trying to figure it all out.

i have lost 11 pounds. i have adrenal and thyroid issues, soaring ACTH levels, hypoglycemia, anemia, blistering sores and rashes, hormonal imbalances, sound sensitivity, head pressure, nerve pain, insomnia, nausea, nutritional deficiencies, anxiety and panic attacks
and
the dog is pooping out my hair.


say what?

the dog is pooping out my hair.

yes. you read that correctly.

(my hair began its mass exodus in december. every where i go, i leave a trail of it behind me. the dog is swiffer-like and is always tailing me...you can use your imagination to fill in the rest of the details.)



like i said its all sort of unexplainable.

that's not even the worst of it
that's just the tip of the iceberg
but 
i don't currently have the words or the where with all to explain what lies submerged beneath the icy surface

to see me no one would ever know all that is going on
which complicates matters.
i look fine
maybe a bit thinner
but 
more or less, i look healthy

and
that just makes everything all the more difficult to explain

so i don't even try to explain it anymore

unless someone knows what to look for or sincerely wants to see it, i am invisible and so is my pain and struggle. and i suspect i'm not the only one who feels that way.
in fact, i am acutely aware that there are others that are hurting and fighting their own private battles. 

this week, i came across two things 
and i felt compelled to share them.

so i am crawling out of my cave of the unexplainable to share them.

the first is this letter that my daughter avery penned a few years back



and
the second is a post that was penned by my friend and fellow blogger, Michelle at My Lyme Symphony. reading it left me blessed me and weeping all in one breath. 

Please visit Michelle's blog, My Lyme Symphony to read the entire post.

Here's an excerpt from Michelle's post, to get you started - 


I understand you.

I understand the depth of what you go through. I understand the undercurrent of emotions. I understand that you've lost so much along the way. I understand not everybody can see it.

I understand how very different life is now. I understand your uncertainty. I understand those moments of despair. I understand the limitations and how frustrating they are. I understand the loneliness. I understand the brokenness. I understand the words that are often left unspoken.

click here to go directly to the rest of her post

may each of you somehow find comfort and peace amid the heartaches and heaviness in your life.


November 4, 2013

SO WHAT HAPPENED?

oops, i did the disappearing act again. darn! i was on such a roll with posting again and then whoosh, 3 weeks go by and nada. 

so what happened?

a few short days after the premiere airing of ticked off, we flew out to SF to see DR H. i planned on posting my thoughts about the documentary once we got down to SF. but, clearly, that did not happen.

so what did happen?

life.
lyme. 
and the roller coaster that life with lyme is.

so what happened?

in short; a sudden onslaught of nausea, increased vomiting and tremoring

in many ways, what happened is not explainable. 

it is often very hard to find the words to explain what happens in the world of lyme. my blog is meant to give a glimpse into what goes on behind closed doors but many times, it is just hard to find the words to describe what that looks like or how suddenly things can change. 

so we (graham and i) did something we've not ever done before - we filmed the sudden attack. we thought it might give folks a new perspective on what lyme looks like. lyme patients often hear "you don't look sick". what does sick look like anyway? lyme has a way of redefining that. after all, sick doesn't always look limp, pale and lethargic. 

at first, we just recorded a few seconds of footage but then, inspiration hit and we decided to make it into a "video blog" and share it on FB. we were completely caught off guard by the response we got... it made a huge impact and people wanted to share it as they found it to be a very useful awareness tool. so, i thought it would be a good idea to post it here on my blog as well. 

a short back story of what happened before:

this attack came on very suddenly during our second office visit of the week with DR H. prior to this, i had been feeling "ok". in fact, the day before, we had spent the day on the beach at santa cruz. i had started a new anti-microbial treatment protocol 6 days earlier so a herx reaction was somewhat expected - however, no one was expecting what happened to happen. just before the tremors started, i began throwing up. i have been dealing with daily vomiting episodes for 19 months now, so barfing is not out of the ordinary for me however, there had been a steady increase in the vomiting in the week leading up to this and it was accompanied by nausea. the nausea is a new thing. the vomiting began at DR H's office. before i knew it, he was IN the bathroom with me. shortly thereafter, the tremors and twitches came on. i am grateful that i was with DR H when the tremors started. he was very caring and reassuring and immediately implemented medical interventions but i have to admit, i was a bit mortified to be barfing my guts out in front of him.

here's the video footage we shared on FB. it has taken me quite awhile to post it here. it was filmed on october 17 in our hotel room in california- it is but a brief glimpse into what is happening...i promise, there is no footage of barfing!

video

so what happened since the video was shot?

we are home from california and mainly, we are just taking it one day at time as my medical team tries to sort all this out. i saw a specialist at a local hospital just shortly after arriving back in canada. he was very lovely and he wanted to try and set up some treatment for me which he felt could be beneficial. we were shocked and so grateful to be offered help. we left that appointment feeling as if we'd just won the lottery! however, last week, i got the very disappointing news that this had fallen through. i do believe this doctor was very sincere in his desire to help but his hands are tied by red tape and bureaucracy. it is so difficult to have your hopes raised only to have them come tumbling down again. it is what it is, and i must just pick up my hope, tenderly brush it off and carry on. 

DR H has set up supportive IV therapies for me thru a local ND and has started me on meds to address adrenal issues. i have had 3 very mild and mini tremor attacks since getting home. i'm on very powerful anti-nausea medication which has helped with the nausea a bit but has not stopped the episodes of vomiting. i have lost 6 lbs since the video was shot. i am tired and weak and as a result, have been laying low but i am hanging in.  i would appreciate your prayers. please pray for wisdom for my docs as they sort out what happened and what is happening. please pray for me as i continue to battle on.  


















October 9, 2013

BEHIND THE SCENES of Ticked Off


for the past two weeks, i've been frenetically emailing the press release for (c'mon everyone, say it with me now) Ticked Off: The Mystery of Lyme Disease. i've also done some good old fashioned door knocking and pounding the pavement personally delivering the press release to both neighbors and various businesses in our city. 

and i am not alone in my quest to reach the masses. 

i have received multiple requests each day for the PDF version. Thank you to each of you who have requested one and are helping to spread awareness. there have been daily updates from other lyme patients who are extending the news far and wide. many of them make my efforts look pitiful by comparison. 

so hat's off to all of you who are quietly going about spreading awareness behind the scenes! i know many of you are doing so at great physical and emotional cost - sharing your story time and time again is hard and draining and more often than not i suspect many of you are exerting and giving every last bit of your precious energy in order to do so. 



keeping busy with the distribution of the press release has been a good distraction - but underneath it all, behind the scenes, i am anxious. worried. scared. my brain is running a million miles a minute on a closed circuit loop...i suspect if you look close enough you may actually see the light from a spark or two erupt from my ears. my gut is tautly wound. it's hard to swallow around the tightness in my throat.



we shared our painful story with a group of individuals we didn't know and then had to trust them to put that out into the national (and international) media...and now we are counting down the hours until we all see how it will play out...
(and i've been running around like a wild banshee trying to get more people to watch. ask me how that makes sense!)

of course, it is natural to worry about how our own personal story will be told and perceived but this is about so. much. more. than us.
there is just so much riding on this. so. very. much. 

and now the hours are winding down.

and there is not much more that can be done. what's done is done - what's not done...well, there is nothing that can be done about that now. it's kind of like the feeling you have when the final store closes on christmas eve and you still have one more thing on your list. it's a sort of odd sense of regret and relief. like, how it's a bummer you didn't get that last little gift but you are glad the agony of fighting the crowds in the mall is over. 



which reminds me, the crew filmed us in the dying days of november and into the dawning of december. traditionally, i (generally) have the halls fully decked and christmas tree up by the third week in november. since they were spending 2 days filming and interviewing us in our home, i had to delay decorating. 

on the final day of filming, avery suddenly turned to the crew and said, 

"ok are you guys done yet? could you get moving so we can get on with things here. we couldn't decorate our house for christmas because of you. you know what, you guys are like the crew that stole christmas!"


Avery & the crew who stole Christmas
so, i'm kicking myself now that the crew that stole christmas never officially interviewed that girl. i don't know why. it just didn't happen. it was crazy and busy and stressful and somehow she never did a sit down with them. none of us realized that until after they had left.

i really do regret she never got a chance to speak her mind.
my girl has been known to say some pretty profoundly insightful things.
however,
she also has her father's humor.
maybe it's for the the best...
you never know with that girl.

i went thru an enormous roller coaster of emotions during the taping - and it stayed with me for several weeks afterwards.



i am very good at thinking i didn't do something good enough.

i thought of the 101 things i could have said. 
i thought of 101 i should have said. 
i thought of the 101 things that were more important to say than the 101 things i chose to ramble on about.

i thought about why i said some of the things i said and how i can be way too chatty - especially in awkward silence sort of situations
("this is our war book" is a perfect example of that- and lordy, that is in the trailer)
and the worst?
i felt like i had had my best conversations with the director off camera.

but that is just me being me.

i had a friend call yesterday. she's done something just like this before and so she knows what really goes on behind the scenes.
she gets how i'm feeling and i was glad to know that.
and we laughed about it.
we laughed about how she cried in her interview and how horrified she was
and
we laughed that i think that it is terrible that i didn't shed one tear during mine.



tonite as i watch the clock wind down, i'm holding on tightly to words of encouragement another friend sent me....

"i hope you know that either way - even if you aren't entirely happy with how everything is presented, not only was it a courageous thing to do but the right thing to do. it gives the opportunity for many to learn and protect themselves or get the help they need because they didn't know what was wrong...and those that are skeptical? well, that's their own journey."

as i was sitting here waiting to for the final pic to upload, a thought just came to mind - about how God is always working behind the scenes, bringing about His purpose in His time - and it's hard to get that, grasp that, believe that especially with the stuff of life that just doesn't make any sense at all but i know that it is true. 

sometimes, we can clearly see His hand in a situation but more often than not, we see Him in retrospect. we look back and say, "okay, God, i see what you were doing there." but just because we didn't see it at the time it was happening doesn't change the fact that He was there, the whole time, working behind the scenes. i'm good with that. i can rest in that.