dare i even venture to post an update - knowing that it is more than possible that anything current could be out of date by the time i finish this post and hit the publish button?
suffice it to say, i will dare.
first let me get this off my chest
i hate this disease
absolutely loathe it
PARKER'S CURRENT STATE:
the craziness side of his symptoms aka the delirium has settled down. i say that with breath held fearing that at any moment he could disappear on us again. for the time being, he is only having sporadic and mild episodes. we are very thankful for that.
i am also pleased to report that the bleeding issues we've been having with raymond (his PICC line) have slowed down to a trickle. we are grateful for that and hoping that all the bleeding will resolve quickly.
on the physical side of things there has been no improvement. his joint pain is still really bad. he is back to having to rely on crawling to get around the house. i am also concerned that his babesia infection (his primary infection) is becoming active again. a large part of his treatment is targeted at the babesia infection. he has now been off both his IV abx (which is for the lyme) and his oral abx (which is for babs/lyme) since last monday (nov 8). within 2 days of being off of them, some of his previously resolved babesia symptoms came back. these are shortness of breath, heat intolerance, body temp dis-regulation and tremors.
currently, we are continuing the intensive detox protocol that DR H put him on. i know some folks are interested to hear what is being done to detox him. so here it is:
500mls of IV fluids a day
IV phosphotydal choline
alka seltzer gold 8tabs/day
benadryl 4 tabs/day
mundipur, burbur detox, coro-calm, renelix, viscum
epsom salt baths
TAYLOR'S CURRENT STATE:
taylor is like the silent partner in our lyme picture. he's sick but not in "crisis mode" sick. he's sick but not psychotically bouncing off the rafters like me. he's sick but not wheelchair bound like parker. he's sick, but as is the curse of most lyme patients, he looks healthy.
he's had some improvement since starting aggressive treatment this past summer. he spent most of the summer couch bound and rarely left the house.
since september, he has been able to get out with friends, he attended and completed his first course thru our church's Bible school, and he was (sometimes) been able to get to his military training one evening a week. but aside from a day or two a week, he still spends a large portion of his time at home. not that i am complaining about that. it's nice to have him hanging around. and his girlfriend mara is a frequent guest. i love that. i love that we get to hang out so much. we all love him and her dearly. but a large part of me grieves over this - because even tho' he's feeling a little bit better his, his life resembles anything but that of a healthy young man.
i am concerned that we have hit a bit of a plateau in taylor's recovery. while he is improved since the summer he has not had any discernible herx since august. if he is not herxing, he is not killing bugs. 10 days ago, he started a cyst buster. the job of this abx is to target the bacteria that is hiding. he's been feeling a little 'off' since starting it and has had an increase in his pain, fatigue and cognitive function. this week, DR H added in another new med. hopefully, he will be able to get started on this one sometime this week. then we'll sit back and brace for impact.
we're hoping that when it hits, his herxing won't include any sort of psychiatric component. he's far too big and too strong to restrain. nuttiness aside, i worry about my son. a lot. i know he doesn't think so but i do. i know he'll get through this but i know he suffers in silence. most of the time. part of that is because i know he doesn't want to add to our stress. part of that is because that is his MO. he tells EVERYONE that he is fine. even me.
and he is not fine.
he is sick.
most days, he struggles with intense pain, fatigue, insomnia, headaches, and diminished cognitive function.
he is hurting.
his friends are moving forward while his life, his dreams, his plans have been sidelined indefinitely.
he's beginning to feel hopeless as the timeline for getting better keeps getting pushed forward.
with having to somehow make his life fit within the confines and constraints of lyme
to find some type of work that fits his unpredictable world
from where he stands, pretty much everything in his life is moving backwards or not moving at all
and his self esteem is taking a beating
magnified by being at an age where the predominant struggle and feeling is that no one understands you
couple that with a having a disease that (nearly) no one understands
well, that's an awful and lonely place for someone to be
he's bearing an awfully heavy burden
he suffers in silence
when he is out, people ask him how i am or how his brother is. it is a rare occasion when HE is asked how HE is doing. do me a favor? if you are someone who is in contact with him, the next time you see him or talk to him, ask HIM how HE is doing.
and when he tells you "he's fine"
ask him again
REALLY ask him
let him know that "i'm fine" isn't enough of an answer for you
i have no doubt that one day he will be fine. i know that he can get through this. i know that he will.
but he could really use some support and encouragement along the way.
SHANNON'S CURRENT STATE:
as aforementioned, i HATE lyme disease.
that is my current state of mind.
however, that is probably an improvement over my state of mind a couple of weeks ago.
at least i'm not completely bonkers anymore.
apart from crazy side of things, i'm feeling really wretched. i've spent the past 4 days flat on my back in bed. which has been beneficial for my blog but not for me or my family. psshhttt! i don't even know what to say anymore. or think. it's just hard to be so brutally sick again. part of me is surprised. part of me isn't.
i really haven't had a chance to recover since my limbic seizures started the end of october. i was barely out of my own craziness before parker's week long run of delirium started. in order to deal with that, i was running on sheer adrenaline. certainly, this barfing business isn't helping or conducive to my recovery. last week, i only had one barf free day. so, in addition to a flaring of my physical symptoms, i am wasted from all the barfing. but i've only lost a couple of pounds so i must be keeping something down. it is a very weird feeling to have to make one's food choices based on how it will taste coming up. sick.
currently, i am off my IV meds and only on oral abx - and then just ones that deal directly with the bartonella infection. however, given my barfing state, i'm not always keeping down those meds. the IV alternative to the orals is not available in canada. DR H is giving things a few days to settle but if i'm still barfing so much, than we'll have to go across the border to get these new IV meds. we haven't even checked out the cost yet. but based on the cost of some of the other IV meds i've been on, we're figuring the cost will be somewhere in and about the "i'm going to have a heart attack" range.
so the count down is on. in the meantime, i'm flat on my back - for reasons i can't really figure out. who ever really knows why? it's not just from the barfing. sure that has weakened me but i've also got intense nerve pain that radiates from head to toe, headaches, shortness of breath, muscle fatigue, dizziness, wonky eyesight and joint pain. is it a herx? am i keeping enough meds down to even herx? is it a flare? i simply don't know.
did i mention i hate lyme?
GRAHAM'S CURRENT STATE:
frazzled, fried, exhausted, angry, sad, burnt out, numb, exhausted, tired, hurting, lonely, exhausted, fed up, stressed out, run down...
i needn't go on, i'm sure you get the picture...
i do what i can, when i can but for the most part, all of this crap is pretty much solely his burden to carry. and now he's got a dog to 'pick up' after. he'd never publicly admit or cop to it but we've all overhead him calling harrison his baby boy.
even if i was the epitome of health, it would not have been possible to care for parker alone over the past week and a half. he needed nearly round the clock monitoring - our only break being the 6 hrs the meds would knock him out for at night. we are beyond grateful that graham's work has given him some time off. his supervisor has been unbelievably supportive and compassionate. we are incredibly thankful and appreciative. graham's work is in incredibly important to him. he works with kids. youth. and he loves them. in his perspective, being off work is tantamount to abandoning them. it is difficult for him to stay away. lyme has required so much sacrifice of himself and it has taken away so much - his interests, his friendships, his down time, his plans - and for now, hopefully just for a very temporary, short time, his job. we are incredibly grateful for the time off but it sucks that this is what needed to happen.
AVERY'S CURRENT STATE:
avery is struggling.
she has seen a lot of craziness over the last couple of weeks. it is starting to take it's toll on her. she has become very quiet. and that breaks my heart. she has always exuded a special joy and that little light has dimmed as of late.
HARRISON'S CURRENT STATE:
he has gas.
really bad gas
so long as we're wearing nose plugs, he really has been and is the hugest, biggest, fluffiest albeit stinkiest source of comfort...