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.