after a 19 month hiatus, i re-started IV abx treatment this past week.
hiatus is not the correct term. a hiatus implies a 'break' from something. IV abx treatment was not something i had anticipated going back on. not ever.
we stopped my IV abx treatment in august 2011...but did not remove my PICC line until february 2012. that was the time frame that i considered the hiatus...i had never done well off of IV, so we kept my line as a safety net. as the weeks off IV rolled by, my health amazingly remained stable. by february, DR H felt that it was "safe" to remove my PICC line.
the removal of my PICC line was a momentous occasion. at the time of it's removal, i had completed 4 YEARS of IV. somehow the fact that it's removal occurred on leap day made it all the more special and symbolic. (READ about that day here.) while i was not declared in remission, it was a tangible sign that i was moving from actively fighting this disease to the recovery phase.
after spending the last 19 months with the mind set that i am in a recovery phase, i now find myself confronted with the need for aggressive treatment again. (the how and why IV has been deemed necessary again is coming in another post).
hence, i find myself re-starting that which i thought had been put to rest. when we saw DR H at the end of Feb, i fully expected that he would prescribe a new round of oral abx (i had already been re-started on one oral abx - plaquenil - back in november) but i was not expecting to be put on IV again. NO. not in a million years was i prepared for that. i did not fully process it when DR H told me. i know i felt relieved that it would be pulsed treatment (pulsed meaning only short courses - one week per month . pulsing is a strategic treatment regime aimed at hitting the bugs when they are most susceptible to the action of the antibiotics.) yet, i think i was so focused on what lay before us with parker's balls to wall treatment that i could not confront what lay before me for me. i know i wrote about it and said it was 'no big deal' but that was me putting on a brave face. truth be told, it was a total blow. i really didn't even want to talk about it or elaborate as that would make it too real.
my IV treatment was scheduled to start last saturday. i had a peripheral line placed on saturday by a local ND, DR C, who is working with DR H to provide care for both sparky and i. i was supposed to start my IV meds that same day but just could not shore up the courage to do it.
i put it off until the following day.
sunday dawned.
i knew i could no longer delay the inevitable.
i had to face this head on.
i reconstituted my meds, took a deep breath and hooked myself up. as i sat there watching the meds drip into the chamber of the IV set, reality set in.
i had just re-opened a chapter of my life that i thought i had permanently closed.
i sat there contemplating that.
it was overwhelming to think about. wondering why and how do i face this all. how bad will i herx? will i become insanely debilitated again? sparky has just started intense treatment, how will we cope with the fall out of this? practically speaking, do i even have the strength and stamina to embark on my own demanding treatment protocol whilst juggling my son's complicated schedule? my IV treatment will include infusions every 8 hours - so 3 IVs per day for me and sparky is on 5 a day. they each take 30-60 minutes to infuse. that is 8 hours of IV per day. never mind the time it takes to re-constitute the meds nor trying to fit in the multiple medical appointments we need to go to each week.
the reality of it all pressed in on me.
i just sat there staring at my line, feeling numb and very alone... and then a trumpet blast pierced the silence. no, it was not the Lord returning...the trumpet call is my text ringtone. yet, i very well consider that what occurred next was from the Lord.
the text was from a dear friend asking if she could drop in that afternoon.
her visit could not have been more perfectly timed. i needed to not be alone that day. but no one knew that.
then when she arrived, she had her 2 beautiful girls with her. my kids ADORE her girls. their arrival immediately perked up sparky. while my friend and i visited, i was so aware of the chattering of the kids. and their laughter. my sparky had a twinkle in his eye and smile upon his face. that, along with the companionship of my friend, buoyed my spirit. the visit, in and of itself, was good medicine for my soul.
yet it do not stop there.
my friend is a "doer". time and time again, she has used her gift of helps to come alongside us in practical ways. this day was no exception. she used her gifting of helps to come alongside us in a way that truly left us speechless.
later on that same afternoon, my son taylor stopped by for a visit. he walked in with a bag, handed it to me and said, "here mom, i bought this for you."
a gift! for me? from my son. how THRILLING!
i opened it and low and behold it contained a little teapot and mug...
my friend's visit, her sweet girls' friendship to my children, their generosity and companionship, and my new mug and teapot from my tenderhearted son just seemed to be God's way of whispering,
hiatus is not the correct term. a hiatus implies a 'break' from something. IV abx treatment was not something i had anticipated going back on. not ever.
we stopped my IV abx treatment in august 2011...but did not remove my PICC line until february 2012. that was the time frame that i considered the hiatus...i had never done well off of IV, so we kept my line as a safety net. as the weeks off IV rolled by, my health amazingly remained stable. by february, DR H felt that it was "safe" to remove my PICC line.
the removal of my PICC line was a momentous occasion. at the time of it's removal, i had completed 4 YEARS of IV. somehow the fact that it's removal occurred on leap day made it all the more special and symbolic. (READ about that day here.) while i was not declared in remission, it was a tangible sign that i was moving from actively fighting this disease to the recovery phase.
after spending the last 19 months with the mind set that i am in a recovery phase, i now find myself confronted with the need for aggressive treatment again. (the how and why IV has been deemed necessary again is coming in another post).
hence, i find myself re-starting that which i thought had been put to rest. when we saw DR H at the end of Feb, i fully expected that he would prescribe a new round of oral abx (i had already been re-started on one oral abx - plaquenil - back in november) but i was not expecting to be put on IV again. NO. not in a million years was i prepared for that. i did not fully process it when DR H told me. i know i felt relieved that it would be pulsed treatment (pulsed meaning only short courses - one week per month . pulsing is a strategic treatment regime aimed at hitting the bugs when they are most susceptible to the action of the antibiotics.) yet, i think i was so focused on what lay before us with parker's balls to wall treatment that i could not confront what lay before me for me. i know i wrote about it and said it was 'no big deal' but that was me putting on a brave face. truth be told, it was a total blow. i really didn't even want to talk about it or elaborate as that would make it too real.
my IV treatment was scheduled to start last saturday. i had a peripheral line placed on saturday by a local ND, DR C, who is working with DR H to provide care for both sparky and i. i was supposed to start my IV meds that same day but just could not shore up the courage to do it.
i put it off until the following day.
sunday dawned.
i knew i could no longer delay the inevitable.
i had to face this head on.
i reconstituted my meds, took a deep breath and hooked myself up. as i sat there watching the meds drip into the chamber of the IV set, reality set in.
i had just re-opened a chapter of my life that i thought i had permanently closed.
i sat there contemplating that.
it was overwhelming to think about. wondering why and how do i face this all. how bad will i herx? will i become insanely debilitated again? sparky has just started intense treatment, how will we cope with the fall out of this? practically speaking, do i even have the strength and stamina to embark on my own demanding treatment protocol whilst juggling my son's complicated schedule? my IV treatment will include infusions every 8 hours - so 3 IVs per day for me and sparky is on 5 a day. they each take 30-60 minutes to infuse. that is 8 hours of IV per day. never mind the time it takes to re-constitute the meds nor trying to fit in the multiple medical appointments we need to go to each week.
 |
| IV treatment laid out for the day |
the reality of it all pressed in on me.
i just sat there staring at my line, feeling numb and very alone... and then a trumpet blast pierced the silence. no, it was not the Lord returning...the trumpet call is my text ringtone. yet, i very well consider that what occurred next was from the Lord.
the text was from a dear friend asking if she could drop in that afternoon.
her visit could not have been more perfectly timed. i needed to not be alone that day. but no one knew that.
then when she arrived, she had her 2 beautiful girls with her. my kids ADORE her girls. their arrival immediately perked up sparky. while my friend and i visited, i was so aware of the chattering of the kids. and their laughter. my sparky had a twinkle in his eye and smile upon his face. that, along with the companionship of my friend, buoyed my spirit. the visit, in and of itself, was good medicine for my soul.
yet it do not stop there.
later on that same afternoon, my son taylor stopped by for a visit. he walked in with a bag, handed it to me and said, "here mom, i bought this for you."
a gift! for me? from my son. how THRILLING!
i opened it and low and behold it contained a little teapot and mug...
my friend's visit, her sweet girls' friendship to my children, their generosity and companionship, and my new mug and teapot from my tenderhearted son just seemed to be God's way of whispering,
"i've got you covered. i'm here. it's gonna be ok.
just
KEEP CALM AND IV ON"
1 comment:
Ohhh, Shannon. I am so sorry to hear this. It's so rough when you think you are finally done with something and then it pops up again. Aaaaaargh!!!! That's me screaming for you in frustration. Praying for you and hoping THIS round is the round that changes everything. XOXOXO
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