July 29, 2012


i thought it was high time i shared something on a more positive and lighter note.
here goes...

i am doing well.

isn't that wonderful?

i am still barfing daily. some days i vomit upwards of 8 times a day. yes, this is still ongoing since march 14. i have not had one barf free day yet. DR H started me on IV nutrition back in May and it helps so much with my energy levels, moods, resolved my nauseau and helped decrease the number of times i vomit on any given day. as long as i 'ingest' 4 nutritional IVs per week, i feel pretty darn good.

and that is very cool...and so is looking down and realizing your outfit color matches your iv line. hee hee.

it is good to know that they are helping but the pseudo nutrition is no way to live. it's extraordinarily expensive and my poor little veins are taking a beating and my arms are littered with "track marks". i recently tried to get by on as few as possible because the cost of them is killing us. as a result, my nausea returned, my vomiting increased and my energy plummeted.

my little tracks
it totally sucked to be dragging myself through the day again, however, i was still managing to function at an above average level for me. i was still hanging on to a sense of well being whilst holding on to a few dollars and cents, so i felt like i had struck a "do-able" balance.

until, that is, my blood counts went haywire.

the past 3 weeks, my blood work for my kidney function has made a significant jump. elevated numbers are not a good thing. it is concerning. we are not at 'freak out' levels yet but my docs are concerned and i am being closely monitored. which means more needle sticks. great.

my most recent lab work also revealed i've now developed neutropenia, low platelets, borderline anemia and various electrolytes are out of whack. all of those coupled with the kidney issues only began to be out of range when i cut back on the number of IVs i was doing. 

clearly, i absolutely need the IVs.

thankfully, my folks, an anonymous friend and a known friend have generously helped us cover costs so that i can receive all the IVs i need for the next 4 weeks. we expect this will result in a rapid improvement in my blood work. we are also trying to figure out a more affordable way to meet my body's needs. i continue to be amazed at how God provides for our financial needs. i'm still learning to keep my eyes solely focused on Him - even when the bank account is riddled in red and minus signs. i don't understand His ways - common sense would tells me it'd be a whole lot simpler for Him, and everyone involved, if He just stopped the vomiting and healed me now - however, He is GOD and His ways are better than my ways...even when they leave me scratching my head and saying, "really, Lord?"

i continue to be reactive to all fruits and vegetables. it is incredibly mystifying. none of my docs can figure that one out. what do i mean by reactive? oddly, this does not appear to be a contributing factor in my vomiting.  the symptoms i experience in relation to the ingestion of vegetables are not in my gut - they are systemic. 

i recently tried to see if this reactivity was persisting.

one evening, i ate some nachos - they had a sprinkling of chopped green peppers on them. i ate them partly because i was too lazy to pick them off. but also as a test, per say. you see, lyme symptoms strike in such unpredictable patterns that sometimes it is difficult - even entirely impossible - to know what it was or is that triggered a sudden onslaught of symptoms. however, i have been feeling so well that i was pretty sure i could finger the green peppers as the likely culprit should i suddenly be hit with a round of nasty symptoms. throwing caution to the wind and in the name of scientific curiousity, i quite literally bit the bullet. 

and within 2 hours, i was down for the count. i had a sudden on-set of profound fatigue - akin to being highly sedated. the following morning, i had joint pain and stiffness that made it difficult to get out of bed. my muscles ached as if i had just run a half-marathon. in fact, i spent most of the following 36 hours in bed. yes. it is that bad. i also had hives, dermagraphism, red-rimmed eyes and a puffy face. i felt toxic. i felt like i'd been run over by a produce truck. ha ha.


it is confounding and puzzling and the oddest of odd. if nothing else, at least, i am consistently odd.

oh wow, i can't believe i started this post with an "i'm doing well."!! 

rather ironic that what follows is a run down on dismal blood counts, kidney issues, vomiting, and a monologue on how veggies nearly render me comatose.

guess it's more like sorta, kinda, not really well type of well. yet that doesn't quite hit it on the head either because i honestly am enjoying a level of health that i haven't had since getting profoundly ill in 2006. i guess i could say i have a sense of well being...and despite challenges, i am sorta soaring. i am spreading my wings and testing them out.

it is profound to think that i have not been on any IV abx since LAST august. that is extraordinary. i am currently on oral abx for that pesky mycoplasma infection but i am not on any abx specific treatment for lyme. we still believe my barfing is related to the myco infection and not lyme. 

once we started treating my mycoplasma infection and DR H got me started on my nutritional IVS (in may), i experienced a prolonged state of well being. when my body is appropriately 'fed', my energy levels soar...as a result, i am sorta soaring. literally. at least i'd equate flying down the longest zip line in Canada to a sort of soaring. it feels good. real good.

soaring with my baby girl
RockRidge Canyon - June 2012

click here to experience the zip line via you tube.


Jude said...

so very glad!

Kathy said...

Glad to hear you are soaring and so sorry you are STILL dealing with this vegetable drama! Looking forward to the day when all of this is just a distant memory. XOXO

Kathy said...

Glad to hear you are soaring AND so sorry to hear you still dealing with all this vegetable drama! Looking forward to the day when all of this is just a memory. XOXO