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.


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.






3 comments:

Renee said...

My goodness, I am amazed at how much your family struggles with...and believe with all my heart that God is in the midst of the storm with you...I too, use this scripture reading as the rock I need in my life to keep trusting and growing and fighting.
Don't you love Max Lucado's book Fearless. It is wonderful and was so helpful when I was going through cancer surgery this year.
Please know you are all in my prayers...

Maria said...

I just wanted you to know that God used you today to remind me that Jesus is in my boat; even if he appears to be sleeping.
May you and your family be upheld by Jesus too.
Thanks...

Marti said...

Wish I had read this after my trip to Seattle. I am making my first trip since 2008 in two weeks. I didn't realize that flying could effect lyme patients. Oh boy!