June 12, 2010
FAITH IN THE STORM
i've finally recovered from my brutal 12 day herx. finally got out of the house for a bit on friday and saturday. i'm hoping my heart arrhythmia will settle down soon so that i can get back to the gym.
on other fronts, the storm of life continues to howl...and i howl along with it. it's got me feeling pretty beaten down, sad, mad, hurt, helpless, frustrated, discouraged, drained. all i can do is continue to pray and keep faith in the storm.
i heard this song yesterday and wanted to share it. it is my prayer for those i love most. i found the words incredibly encouraging. thought a few of you out there, battling through your own storms, could use some encouragement too. i sure know i need all the encouragement i can get right now. maybe it's only me, but i've always found courage in encouragement.
WHAT FAITH CAN DO
by Kutless
Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it's more than you can take
But you are stronger, stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
It doesn't matter what you've heard
Impossible is not a word
It's just a reason for someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can!
June 8, 2010
THE LIFE STORM
"Father, help us not to resent the storms of life or be fearful of their effects. much like we prepare for a ravaging storm by anchoring valuables to a firm foundation, help us to anchor our hearts in the firm foundation of Your Word that will help us to withstand the testings and trials of life that are certain to come our way. even as a ship is proven to be seaworthy over its lifetime, may our faith be proven trustworthy as we hold onto You, the Anchor for our soul. Amen"
while we were in SF, i spent a lot of time struggling to come to terms with the course of treatment that we face with the boys. it was and is so hard. i am and have been dealing with so many fears. upon returning from SF, in the midst of grappling with this lyme storm and just when i was at my physically weakest point, we were hit hard with another storm.
this latest storm has left me emotionally tattered and battered. i have struggled immensely with how to be public with my pain yet remain private with my circumstance. all i can say is that those i love most in this world are hurting and this has caused me considerable pain and unrest. this life storm is unbearable to me. all i can share is what God is teaching me in the midst of it.
is it coincidence that i've just come away from a week in which our ultimate edition grande marquis spawned a boating theme? i think not. it has caused me to delve deep into all things boating as they pertain to God. this has been my life preserver in the midst of my shipwrecked emotions. and yet, in the wake of this latest monsoon, the comfort and peace i derived from them has left me wondering and questioning how they pertain to this additional storm. after all, things just got worse. forget the white knuckled, waterlogged boat ride, i've toppled overboard right into a raging sea of pain and doubt and chaos.
i am drowning here Lord. if i have toppled overboard as i feel i have, then where are you? are you still in the boat or in the midst of the stormy sea with me? will you ever rescue me? life just keeps getting worse. and i can't take it anymore. life is unbearable and i do not have the strength to withstand it. just when i think i've hit rock bottom, rock bottom gives way and plunges me into even deeper depths. and it is just not fair and when will it stop? and why do some folks seem to sail right through life facing only a few storms while others spend most of their life bailing out their boat just to stay afloat?
and on and on my breaking heart and troubled mind have screamed these questions and more. ah yes, the force of this monsoon has assaulted me with the winds of fear and doubt. and so i have found myself submerged in the deepest of deeps.
as max lucado writes:
"doubt storms are turbulent days when the enemy is too big, the task too great, the future too bleak and the answers too few. they leave us with tough questions. throw-in-the-towel questions. you wonder if it is a blessing or a curse to have a mind that never rests...and who are you to ask such questions anyway?"
thank you max, at least i know that i am not alone in my questioning.
but back to my dilemma of drowning. and my current state of affairs which are well, incomprehensible to be blunt. yet, i don't know what has been worse to bear - the situation itself or the fear that it has stirred up within me.
again, i defer to max:
"fear feels dreadful. it sucks the life out of the soul, curls us into an embryonic state and drains us."
yup. that pretty much describes my status over this past week.
max is a great writer. in fact, i love his style. yet max, in all his gloriously talented penmanship, is not enough to pull me out of the furiously raging sea i've been tossed into. only God can keep me bouyant at a time when i have not the strength or desire to tread water. so back to the bible i have gone...
to find courage.
to find strength.
to find hope.
to find peace.
to find my savior...
matt 14:27-32
"but instantly He spoke to them, saying, "take courage! I AM! stop being afraid!"
and peter answered Him, "Lord, if it is You, command me to come to you on the water."
He said, "come!"
so peter got out of the boat and walked on the water, and he came toward Jesus. but when he perceived and felt the strong wind, he was frightened, and as he began to sink, he cried out, "Lord, save me!" instantly Jesus reached out His hand and caught and held him, saying to him, "O you of little faith, why did you doubt?" and when they got into the boat, the wind [storm] ceased."
given the overboard status i harbor in my mind, do i have the courage to believe that God is still in control - that i have not just randomly toppled overboard as the result of some cosmic mishap?
bottom line, whether i am in the boat or out of the boat, Jesus is with me. yet, do i trust him to rescue me? do i have the courage to believe that He will pluck me out of this murky, raging sea? i hold fast to the hope that not only will He put me back in my battered little boat but that He will get me to the other side just as he has promised.
psalm 107:23-31
some of you set sail in big ships;
you put to sea to do business in faraway ports.
out at sea you saw God in action,
saw his breathtaking ways with the ocean:
with a word he called up the wind ~
an ocean storm, towering waves!
you shot high in the sky, then the bottom dropped out;
your hearts were stuck in your throats.
you were spun like a top, you reeled like a drunk,
you didn't know which end was up.
then you called out to God in your desperate condition;
he got you out in the nick of time.
he quieted the wind down to a whisper,
put a muzzle on all the big waves.
and you were so glad when the storm died down,
and he led you safely back to harbor.
so thank God for his marvelous love,
for his miracle mercy to the children he loves.
He will give me the strength to persevere through this latest storm. He will give me peace in the moments that i am overwrought with fear, pain and doubt. He will give me the ability to rest in the knowledge that He hears my cries and feels my anguish. He will give me the courage to trust that in His sovereign wisdom and at His divinely appointed hour, He will rescue me.some of you set sail in big ships;
you put to sea to do business in faraway ports.
out at sea you saw God in action,
saw his breathtaking ways with the ocean:
with a word he called up the wind ~
an ocean storm, towering waves!
you shot high in the sky, then the bottom dropped out;
your hearts were stuck in your throats.
you were spun like a top, you reeled like a drunk,
you didn't know which end was up.
then you called out to God in your desperate condition;
he got you out in the nick of time.
he quieted the wind down to a whisper,
put a muzzle on all the big waves.
and you were so glad when the storm died down,
and he led you safely back to harbor.
so thank God for his marvelous love,
for his miracle mercy to the children he loves.
June 7, 2010
THE LYME STORM
our flight home ended up being delayed by nearly 9 hours. we arrived at the airport at 1:30pm on friday for a flight that was supposed to leave at 3:50pm - but didn't end up flying out til 11:30pm.
we didn't get home until 3 am on (last) sat morning.
even under the best of circumstances, air travel is incredibly hard on folks with lyme. not just because it is physically taxing but for some reason air travel exacerbates the infection (DR H explained why that is to me but naturally i can't remember now).
on top of that, i headed into this flight teetering on the brink of a herx. i knew the minute i dragged myself out of bed on that friday morning that i was starting to head into a herx. i wasn't surprised by this. in fact, i expected it and it's 'on time' arrival is indicative of the progress i've made over the past few months. this more defined cycling of symptoms and somewhat predictable pattern in my herxing is a big deal and a positive sign. unfortunately, i was not prepared nor expected for this herx to be this bad. i have not even implemented DR Hs new treatment plan yet. so i can't blame the intensity of this herx on a new bug killing regime. is it possible the 9 hr delay magnified the intensity of my herx? sure. but who really knows? the other explanation would include the word 'relapse' and if i am to go on, i cannot entertain that thought.
i am hopeful - and it stands to reason - that the additional stress and fatigue caused by the delay undermined my immune system and set up a less than ideal stage for my body to cope with and effectively handle the massive explosion of bacterial carcasses coursing through it. totally plausible.
whatever the underlying issue, this herx has been very intense and i have had a resurgence of symptoms that i have not had problems with for several months. primarily heart issues and severe joint pain again. the fatigue and brain issues have never left (yet) - even on a good day. i have not been able to get off the couch since our return more than a week ago. it is depressing to be in such rough shape again. i was too weak to even sit up to have my picc dressing changed when my nurse came last monday.
both the boys have been in rough shape too. parker had a reaction from our flight down to SF. he broke out in a rash.
this same thing happened with him (altho' the spots were different) when we flew down in december. the flight home (in dec) exacerbated parker's symptoms so badly that he ended up in the hospital within hours of landing.
since his body reacted in a similar way on the flight down this time around, it certainly gave us reason to be concerned about how his body would tolerate the flight home. thanks to allegiant air, we had plenty of hours to sit around the airport worrying about that. fortunately, he hasn't gotten bad enough to warrant a trip to the ER. yet, he has been very ill since returning home. in fact, both the boys had to deal with pretty intense symptoms- especially in the first 24 hours of being home. their bartonella infections manifest as nauseau and migraine headaches. both had terrible headaches and bouts of throwing up. it goes without saying, that their fatigue levels are profound.
in addition to spending the week herxing, i have been trying to process all of what we learned will be the next steps in our treatment. the most difficult to accept is that it has been determined that parker needs to start IV treatment. i cannot even begin to explain the horror i felt over this when DR H told us. i was completely blind sided by that. fortunately, i'm not near as hysterical over it today as i was a week and a half ago. but it is a challenge to not allow it to overwhelm me... the financial cost alone makes me faint of heart never mind what the thought of getting a port o' catheter surgically implanted in my 10 yr old does to me if i think too long or too hard about it. barring a miracle (and i am wide open to miracles) we will need to travel back down to SF to have the port o cath surgery done there. while the port o cath is more surgically invasive and more scary to deal with than a picc line (what i have), it is a far better choice. especially for a child.
the goal is to start IV by september. the interim plan is to stabilize his condition/symptoms and beat back his bartonella and babesia infections enough so that his herxes on IV will be less intense.
DR H feels that taylor has a really strong immune system and his body will be able to handle aggressive treatment. he does not think that taylor will get as sick as me or parker have. his plan for taylor is to hit his infections hard and hope that he will be in decent enough shape to resume some semblance of normalcy by january. that, of course, is the best case scenario.
i am holding this best case scenario at an arm's length. for my own sanity, i cannot allow myself to embrace it. DR H has presented us with many best case scenarios before but (at no fault of DR Hs) these 'best case scenarios' have not been how things have turned out. right now, having the expectation of them has made coping with the 'worst case scenarios' when they arrive that much harder. after all, we were told that parker would not get as sick as me. he did. at the time he was diagnosed, we were told he most likely would not need IV. and now he does.
i don't even want to hear about best case scenarios anymore. prepare me for the worst! please! i'd rather be caught off guard with an unexpected positive rather than the other way around. DR H doesn't think taylor will need IV but he will be re-assessing him at the end of july. he feels he'll have a better idea of whether or not taylor will need that type of treatment then. i expect that he will need IV. it'll be a very nice surprise if i am wrong about that.
and me? whoosh. i waltzed into my appointment thinking that i was maybe nearing the end of treatment. i knew i still had a ways to go and that we still have not addressed my bartonella infection head on however i have made such excellent progress over the past few months. i knew going into my appt that i would need to start a new med to treat the bart, but i was anticipating that we would be able to start tapering down on some of the abx i am on for lyme and babesia. DR H was duly impressed with my progress. i certainly have made huge strides physically. however my neurological/nervous system assessments revealed a less than glowing report. this was so discouraging. i tried not to let it get me down but it did. rather than coming away with fewer prescriptions, he has added in an additional 3 to my existing treatment. not to mention it appears that my dysautonomia has gotten worse and i may have developed an arterial disease. i have to have a plethora of blood work done (some can be done here and some done in the states). there appears to be no readily found answer to explain my significant and continuing hair loss. having to deal with what appears to be the possibility that i am going bald is really the icing on the cake.
all of this, had me feeling incredibly defeated and depressed. to boot, we had some particularly nasty weather while we were there. (apparently one of the worst weeks SF has had in the month of may in a long time). it was especially stormy weather on the morning of taylor's appt.
this unprecedented rainfall coupled with the 'boating' theme that evolved while we were there helped me to remember a bible story and devotional that God has used to comfort me over the past 6 months or so. it is the story of the disciples in the boat with jesus in the midst of a storm.
"and a furious storm of wind [of hurricane proportions] arose, and the waves kept beating into the boat, so that it was already becoming filled. but He was in the stern asleep on the cushion; and they awoke Him and said to Him, teacher, do you not care that we are perishing? and He arose and rebuked the wind and said to the sea, hush now! be still! and the wind ceased and there was [immediately] a great calm [a perfect peacefulness]. He said to them, why are you so timid and fearful? how is it that you have no faith [no firmly relying trust]?" - mark 4:35-40
max lucado, in his book fearless, sums it up;
"now there's the scene. the disciples scream, Jesus dreams. thunder roars, Jesus snores. He doesn't doze, catnap or rest. He slumbers."
i can sure relate to the disciples fear and had their question;
"teacher, do you not care that we are perishing?"
like me, the disciples focused on the problem and in doing so became fearful and doubtful.
in his book, fearless, max lucado goes on the write,
"fear does this. fear corrodes our confidence in God's goodness. we begin to wonder if love lives in heaven. if God can sleep in my storms, if his eyes stay shut when my eyes grow wide, if he permits storms after i get on his boat, does he care? fear creates a form of spiritual amnesia. it dulls our miracle memory and makes us forget what Jesus has done and how good God is."
as i persevere through this storm called lyme, let me not forget that Jesus was IN the midst of the storm and IN the boat WITH them.
we didn't get home until 3 am on (last) sat morning.
even under the best of circumstances, air travel is incredibly hard on folks with lyme. not just because it is physically taxing but for some reason air travel exacerbates the infection (DR H explained why that is to me but naturally i can't remember now).
on top of that, i headed into this flight teetering on the brink of a herx. i knew the minute i dragged myself out of bed on that friday morning that i was starting to head into a herx. i wasn't surprised by this. in fact, i expected it and it's 'on time' arrival is indicative of the progress i've made over the past few months. this more defined cycling of symptoms and somewhat predictable pattern in my herxing is a big deal and a positive sign. unfortunately, i was not prepared nor expected for this herx to be this bad. i have not even implemented DR Hs new treatment plan yet. so i can't blame the intensity of this herx on a new bug killing regime. is it possible the 9 hr delay magnified the intensity of my herx? sure. but who really knows? the other explanation would include the word 'relapse' and if i am to go on, i cannot entertain that thought.
i am hopeful - and it stands to reason - that the additional stress and fatigue caused by the delay undermined my immune system and set up a less than ideal stage for my body to cope with and effectively handle the massive explosion of bacterial carcasses coursing through it. totally plausible.
whatever the underlying issue, this herx has been very intense and i have had a resurgence of symptoms that i have not had problems with for several months. primarily heart issues and severe joint pain again. the fatigue and brain issues have never left (yet) - even on a good day. i have not been able to get off the couch since our return more than a week ago. it is depressing to be in such rough shape again. i was too weak to even sit up to have my picc dressing changed when my nurse came last monday.
both the boys have been in rough shape too. parker had a reaction from our flight down to SF. he broke out in a rash.
sparky's flying spots
this same thing happened with him (altho' the spots were different) when we flew down in december. the flight home (in dec) exacerbated parker's symptoms so badly that he ended up in the hospital within hours of landing.
since his body reacted in a similar way on the flight down this time around, it certainly gave us reason to be concerned about how his body would tolerate the flight home. thanks to allegiant air, we had plenty of hours to sit around the airport worrying about that. fortunately, he hasn't gotten bad enough to warrant a trip to the ER. yet, he has been very ill since returning home. in fact, both the boys had to deal with pretty intense symptoms- especially in the first 24 hours of being home. their bartonella infections manifest as nauseau and migraine headaches. both had terrible headaches and bouts of throwing up. it goes without saying, that their fatigue levels are profound.
in addition to spending the week herxing, i have been trying to process all of what we learned will be the next steps in our treatment. the most difficult to accept is that it has been determined that parker needs to start IV treatment. i cannot even begin to explain the horror i felt over this when DR H told us. i was completely blind sided by that. fortunately, i'm not near as hysterical over it today as i was a week and a half ago. but it is a challenge to not allow it to overwhelm me... the financial cost alone makes me faint of heart never mind what the thought of getting a port o' catheter surgically implanted in my 10 yr old does to me if i think too long or too hard about it. barring a miracle (and i am wide open to miracles) we will need to travel back down to SF to have the port o cath surgery done there. while the port o cath is more surgically invasive and more scary to deal with than a picc line (what i have), it is a far better choice. especially for a child.
the goal is to start IV by september. the interim plan is to stabilize his condition/symptoms and beat back his bartonella and babesia infections enough so that his herxes on IV will be less intense.
DR H feels that taylor has a really strong immune system and his body will be able to handle aggressive treatment. he does not think that taylor will get as sick as me or parker have. his plan for taylor is to hit his infections hard and hope that he will be in decent enough shape to resume some semblance of normalcy by january. that, of course, is the best case scenario.
i am holding this best case scenario at an arm's length. for my own sanity, i cannot allow myself to embrace it. DR H has presented us with many best case scenarios before but (at no fault of DR Hs) these 'best case scenarios' have not been how things have turned out. right now, having the expectation of them has made coping with the 'worst case scenarios' when they arrive that much harder. after all, we were told that parker would not get as sick as me. he did. at the time he was diagnosed, we were told he most likely would not need IV. and now he does.
i don't even want to hear about best case scenarios anymore. prepare me for the worst! please! i'd rather be caught off guard with an unexpected positive rather than the other way around. DR H doesn't think taylor will need IV but he will be re-assessing him at the end of july. he feels he'll have a better idea of whether or not taylor will need that type of treatment then. i expect that he will need IV. it'll be a very nice surprise if i am wrong about that.
and me? whoosh. i waltzed into my appointment thinking that i was maybe nearing the end of treatment. i knew i still had a ways to go and that we still have not addressed my bartonella infection head on however i have made such excellent progress over the past few months. i knew going into my appt that i would need to start a new med to treat the bart, but i was anticipating that we would be able to start tapering down on some of the abx i am on for lyme and babesia. DR H was duly impressed with my progress. i certainly have made huge strides physically. however my neurological/nervous system assessments revealed a less than glowing report. this was so discouraging. i tried not to let it get me down but it did. rather than coming away with fewer prescriptions, he has added in an additional 3 to my existing treatment. not to mention it appears that my dysautonomia has gotten worse and i may have developed an arterial disease. i have to have a plethora of blood work done (some can be done here and some done in the states). there appears to be no readily found answer to explain my significant and continuing hair loss. having to deal with what appears to be the possibility that i am going bald is really the icing on the cake.
all of this, had me feeling incredibly defeated and depressed. to boot, we had some particularly nasty weather while we were there. (apparently one of the worst weeks SF has had in the month of may in a long time). it was especially stormy weather on the morning of taylor's appt.
this unprecedented rainfall coupled with the 'boating' theme that evolved while we were there helped me to remember a bible story and devotional that God has used to comfort me over the past 6 months or so. it is the story of the disciples in the boat with jesus in the midst of a storm.
"and a furious storm of wind [of hurricane proportions] arose, and the waves kept beating into the boat, so that it was already becoming filled. but He was in the stern asleep on the cushion; and they awoke Him and said to Him, teacher, do you not care that we are perishing? and He arose and rebuked the wind and said to the sea, hush now! be still! and the wind ceased and there was [immediately] a great calm [a perfect peacefulness]. He said to them, why are you so timid and fearful? how is it that you have no faith [no firmly relying trust]?" - mark 4:35-40
max lucado, in his book fearless, sums it up;
"now there's the scene. the disciples scream, Jesus dreams. thunder roars, Jesus snores. He doesn't doze, catnap or rest. He slumbers."
i can sure relate to the disciples fear and had their question;
"teacher, do you not care that we are perishing?"
like me, the disciples focused on the problem and in doing so became fearful and doubtful.
in his book, fearless, max lucado goes on the write,
"fear does this. fear corrodes our confidence in God's goodness. we begin to wonder if love lives in heaven. if God can sleep in my storms, if his eyes stay shut when my eyes grow wide, if he permits storms after i get on his boat, does he care? fear creates a form of spiritual amnesia. it dulls our miracle memory and makes us forget what Jesus has done and how good God is."
as i persevere through this storm called lyme, let me not forget that Jesus was IN the midst of the storm and IN the boat WITH them.
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