i am not alone
here first, i will write a VERY brief (ya sure, it is me here) medical update so that you can sort of understand what in the world has been “wrong” with me….(feel free to skip this first part if you know it all already or don’t feel like hearing it all!)
almost exactly three years ago i got viral meningitis. i was pricked six times (ouch!) for the spinal tap and then i developed what they call “spinal headaches” from that, due to a leak in my spinal fluid. this leaking causes the pressure in your head to change because your brain is no longer being cushioned by spinal fluid that is leaking out and causes severe headaches when you are upright, but is relieved when lying down because leaking is much less. so, i got two blood patches (where they take blood from your arm and shoot it into your spine in hopes that it clots) to “patch” up the leak. i suffered a bulging disc and serious numbness in my arms and legs for a year after that every time i lied down, and then it kinda all went away, sort of. then, last november i got the spinal headaches again (this time i knew exactly what they were since i had them in the past) and after months of being flat on my back because the doctors weren’t convinced that’s what it was (it “didn’t make sense” to them why i’d be “leaking” again two years after the awful spinal tap) i had two more blood patches and the headaches went away. but, also at that same time, i had NO energy, literally couldn’t lift my limbs to move or walk at all. they did blood tests and discovered i had ZERO cortisol in my body. this is the stress hormone that helps you get out of bed, deal with stress, illness, “fight or flight” reaction, basically function in life…and i had none. they concluded that my pituitary gland was failing to tell my adrenal gland to make the stuff. ( i know, i know…what are those glands? just go with me here, it is too much to explain and it goes beyond my knowledge of the hip bone’s connected to the thigh bone) they jacked me up on WAY too much steroids (hydrocortisone- the fake version of cortisol) and told me it was all unrelated. so, for months i had to deal with the AWFUL effects of having WAY too much steroids in my body and having to taper this drug lower and lower every few weeks. i went into adrenal crisis a few times and was hospitalized because any time i got real sick, or got a ruptured ovarian cyst, for instance, (SO not cool!) my body couldn’t react. fast forward about eight months and this summer i began to have the spinal headaches again, yes…again. i went back to hospital again, this time for 16 days while they ran tons of tests and still decided it was “just” a spinal fluid leak. they tried two more blood patches and apparently they didn’t work. that was four weeks ago and i am still flat on my back, in serious pain every time i get up for more than about 5 minutes. whew. (yes, that really was the short version)
now…back to the good stuff 🙂
so, lately i have a lot, and i do mean A LOT of time on my back and with the ability to be on the computer. now, i honestly don’t just lie around and watch tv and play on facebook all day. what a waste that would be. in fact, i don’t do either that much at all during the day…for lots of reasons. believe it or not, that gets OLD very quickly. there is nothing good on tv during the day, and one can only watch so much hgtv, friend. and, being that my friends are not also lying around all day on their facebook, it isn’t much fun to not be updated every minute or two. but, the main reason is because my wonderful parents are here with either abigail and/or benjamin during the day and i want to be a part of it. often, they are just fine with only nana and grandpa ( that hurts a bit… ok, it hurts a lot) but i do try to get them to interact with “mama on the couch” as much as possible. but, they are four years and eighteen months old so, that gets old for them, pretty quickly. they wanna run around, play games all over the house, go outside, etc. understandable. still hurts mama, though.
anyway…i was actually on the computer the other day and decided to research online what i was going through. now, for those of you who have ever had a medical drama of any kind, you know this can be dangerous. often, you find out waaay more than you wanted to know. you can look up three harmless symptoms and find out that you are for sure either the carrier of a 1 in a million chance of liklihood rare disease that gives you three months to live, and those same symtoms might turn up that you have a foot fungus, go to walgreens and get some anti-itch cream and it will be gone in a week. who knows. it is retarded really. and something i have tried not to do too much in all these months and months, because honestly, it can be dangerous. there is a fine line between being your own advocate, researching for yourself or taking every thing the doctor says as truth, and then obsessing over this thing. anyway…i hadn’t been online about it all in a while and wanted to see if there was anything else i could be doing to help heal this spinal fluid leak to heal. (i was pretty sure i knew the answer, (wait and PRAY!) but i felt the desire to check…thank you holy Spirit…now i know why!)
i was looking around at some results that came up…some people who had gone through similar history as mine, some way worse, others not as traumatic…and how their doctors treated it…what worked, what didn’t, etc. then, i found a link to a facebook group that someone had made specifically for spinal fluid leakers. interesting. i was intrigued. so, i got on my fb account and looked the group up. i couldn’t believe it. 256 members. whoa. i read through pages and pages of posts of people who were going through what i was going through RIGHT NOW and how they were supporting each other, updating each other, giving advice to each other, praying for each other, just being there for each other. it was unbelievable. and you know what i did?? that’s right, i cried. (shocker, i know) it is hard to explain what it was like to see that there were other people out there describing the exact same pain i am in. some of them were on the other side of it, but still posting comments for the “rest of us” to help us get through. wow.
one girl has been bed-ridden for 18 months and just found out that her daughter inherited this disease (likely makes her susceptible to a weak dura, or lining around spinal chord, and causes problems like mine) and has a tumor now…her 10-year old daughter. so sad.
one girl had been flat on her back for 56 days and had to postpone her wedding. her wedding!! can you imagine?? she was praising God because she was feeling better now, her leak had healed and she will be married next week. what a joy everyone on the page shared with her and they couldn’t wait to see pictures!
i posted my story and heard back from people within an hour. i was stunned. they were so compassionate and understanding and they KNEW exactly what i was feeling and going through. all of it. they opened up their lives to me immediately!! they were kind, empathetic, had great advice…and they were just THERE for me, ya know??? in fact…i met three women who had even had the adrenal crisis that i have had too at the same time. I COULDN’T BELIEVE IT!! they explained to me how it is all related. (yep, insert more tears here) all this time, my doctors have said that my two “problems” were “un-lucky” and un-related. i didn’t believe it. i just knew it couldn’t be. now i knew that there were others who had the same issues i had. and it gave me a whole new sense of hope.
i love Jesus. so, i have always had hope. well, maybe i shouldn’t say always. always is what we call in our house, a “strong” word. i have had my less-than-hopeful moments here and there…as i am sure you can imagine, over the last year or two…or three. but, overall, i have remained hopeful…for sure. why? because i have faith. they go together. hebrews tells us that…. “now faith is being sure of what we hope for and certain of what we do not see.” (heb. 11:1) i am hopeful of my healing, although i do not see it right now. i am certain God is with me even though i do not see Him physically.
but, oh do i see Him.
i saw Him through my computer screen yesterday. this had Him written all over it. for sure. i can’t do anything but grin from ear to ear and thank Him for this gift.
i sit here now though (ok, i lie here) and ache a bit. this has got to be what people who don’t know the Lord feel like. they think they have it all together. they are tootin’ around in their lives, doing “ok”… but, deep down somewhere they are missing something. they know it. whether they acknowledge it or not is one thing. they might bury it deep, deep, to the darkest part of their hearts…but it is there. God put that longing for Him in each of us. but, friend…what happens when they finally come?? when they meet you??? when they meet me?? when they reach out and find YOUR facebook page???
i can’t help but think what would have happened had this group not accepted me? “de-friended” me? if no-one would have written back and tried to relate to me at all?? or if my drama would have been too much for them? oh, that would have crushed me. to finally feel like i may have found a place where others might “get me” and all i’ve been through…only to find i was wrong…again. oh, that hurts so deep.
a sweet friend of mine came over to help out and “babysit” me 🙂 recently and she was talking about an old boss of hers. he wasn’t a very nice man at all. very rough to work for. he treated everyone with rudeness, contempt, arrogance, harsh words, judgment…you get the idea. he was awful to work for, apparently. then, he got non-hodgkins lymphoma. and he survived it. and you know what…nothing changed. that’s right. he went back to being the exact. same. way. and something she said hit me so hard… “you’d think after something like that, it would really change a person and you’d be able to tell a difference!”
whoa. that one got me.
NO…i am not AT ALL comparing my awful last year (or even the pretty rough two years before that, when all this started) to having cancer….do not mistake me here. not even close. but, i will tell you this….when she said that, later i was replaying it in my head and i thought of myself. ooooohhh how i want to learn every single gigantic, enormous, big ol’ thing and every itty bitty minuscule thing He is wanting to teach me through this trial. every. single. thing. i want not one of these days wasted. not a one. oh how i want others to be able to see a huge change in me. huge. bigger than huge. well, i don’t want them to see me at all, actually. i want them to see Jesus.
so, friend. no matter where you are. no matter what you are going through or what you have been through. or what you will go through. if you are breathing in and out right now, He’s not done working in and through you. be assured of that. in the past, He has tried to teach you things. He has tried to mold you. have you let Him? my answer has been NO so many more times that i would prefer to admit to you.
oh how i encourage you to be like these wonderful “fellow leakers” as they call themselves. be so open with people. don’t put up walls. we, as believers should have no walls between us and others who are trying to figure out what it is about us that is “different”. we dress up our walls with Scripture and crosses and faux finish…but they still keep people out. ugh. be authentic. God made you the way you are. He makes no mistakes. He didn’t get done with you and say to Himself “oh man, that one didn’t turn out so great, i’ll do better next time. four million three hudredt thousandth time’s a charm, eh?!”
maybe you haven’t had health issues. but, friend, YOU HAVE ISSUES. i’m willing to bet the ranch on it. and i don’t even have a ranch. 🙂
let Him use it. every last ugly part of it. if it was ugly and now it’s not..guess what?? HE gets glory for that! how cool is that!?! if it was ugly and it still ain’t pretty, then, well…maybe you should go to Him about it and let Him know something fresh you are thinking and feeling about it. give Him some confessions about it. lay it all out. get that thing pretty, so He can get some glory and the walls can come down.
i have never been alone. i have God. i have an amazing support system. people, who, for some reason (it’s gotta be cause they love God, and me, i guess, too) stick right by me through all my drama.
but now i also have fellow leakers. i have a new group to support me. isn’t that just like God. He’s fed me (the five-thousand) but now He’s also gathered up the left-over 12 baskets full (my fellow-leakers) and is not letting one thing be wasted. (see John 6, or any of the gospels, really)
i just love Him. and i love you all, too!!
So glad you found such a supportive group! Who knew! You should know that anyone who knows you already sees Jesus in you through all of this! You shine his love, mercy, and grace everyday. We are still praying for you and your precious family! See you soon! Owen has asked to come see Benjamin everyday this week! Next week?! 🙂
oh, wow,caroline, i am totally crying after reading this! i SO agree with you about wanting to learn every single thing that God is trying to teach me through this stupid leak. you know i've been up and about. i've actually had a normal feeling week – until today – headache again. i feel like it's God pulling me back down in His lap again, telling me to slow down and sit awhile with Him! one thing i envy about you – you have taken the time to write all this out. i still have not journaled about it – it's just SO EMOTIONALLY DRAINING! but i know i need to! thanks for pouring yourself out!