as you can see...

...we've made some changes on this here blog of ours. i don't know why, just felt like a time to do a bit of a kid-centric look for awhile. i hope it is enjoyable to ye readers *smile*

the girls are playing together right now. without fighting or pushing or adeline pulling that crazed child look right before she mows over her sister in full steam. they're, of course, playing with their kitchen stuff. so crawfords & weinsteins, thank you *so much* for giving us your family's kitchen set to re-do & give to our girls. they love it immensely.

***

yesterday was a bit of a disaster for me. i had an appointment with the infamous dr im, the d.o. who finally took my pain & symptoms seriously 3 months ago. & i have held to him saying 'my guess is that you'll be feeling mostly back to normal by our appointment in janurary.' well, damn it. not so much.

during the appointment, after i told him of how i felt great for about a month, then sleep started to become less like sleep & more about wake up, go back to sleep, wake up, (or wake up at 2 & don't go back to sleep at all! argh!)...then i mentioned other things & then--& this is so embarrassing--i started crying in front of him! he was very kind about it all, just handed me a box of tissues & said the dreaded words...'some people take longer than others for their adrenal glands to recover & regain proper functioning. with this type of fibromyalgia, our goal right now is that you have more good days than bad ones. think of all the improvements you have made so far, let's concentrate on the positives.' by that time i was nearly sobbing & i'm sure he was making a mental note in his head to underline the symptom i had just told him of having these 'mood swings', lol.

i was given some more supplements to take & then told to switch my sleeping pill. i went in hoping to lessen my pill intake & came out with two more! & an open rx for diflucan, the miracle pill for yeast infections. i get about 2 yeast infections a month! yes, lovely, isn't it? so after i mentioned that, he ordered bloodwork to see if i have a gluten sensitivity...& the thing about being in a hospital & being poked with so many needles is that i just sat right down in their lab downstairs (they have such a nice facility!), gave them my arm, they took my blood, i smiled at them, thanking them for a nice job, & walked out. amazing. a year ago, i would have to lay down for 20 minutes to ensure i didn't pass out & i would be doing some birth-breathing while the needle was going in, etc. what a change a year makes; i can finally take a blood draw like an adult!

so i came home & thankfully my mom was here b/c all i did for the next 3 hours was cry. i would be fine & then i'd think of all the pills i'm taking, the pains i have, the headaches, the migraines, etc & would just cry again. ugh, what a day. the only highlight of that appointment was that dr im said that getting a massage a few times a month would be very beneficial to the muscle/fibromyalgia pain. yea! he mentioned some places that have discounts if you pay for 6 months at a time, so we shall see. really, all i see are $$$, but...

***

anyway. adeline indeed has some sort of virus going on. lots of coughing, lots of snot, a fever. & when adeline has all of these things, well, like any sick person, she can be very grumpy. like just now. she came over to me suddenly (she was in the other room playing nicely with her sister) & nearly yells to me with this very mean look on her face: I DO SOMETHING NOW. I NEED SOMETHING. I NEED SOMETHING. so i remind her how to ask a question in a nice voice & she just keeps yelling I NEED SOMETHING & i ask her what does she need & she just yells back. so i sternly ask her, is this how you are to ask for help? i don't know what you need unless you tell me more details. to which she screams: I NEED SOMETHING NOOOOWWWWWW. as you can imagine, she is now in time out, wailing, 'i want daddy, daddy, daddy, daddy' etc.

oh the joys of a sick preschooler! i am guessing that, yes, she does need something. maybe a drink or help reaching something. but with her limited communications abilities right now & probably her head ache & just not feeling well...she sorta turns into this monster who really just needs a big hug. & now amelia is imitating her sister & is walking around the house with her bunny, doing fake cries. ugh. this is going to be a long day.

***

i am envisioning a year from now: adeline will be 4.25 years old, amelia 2.25 years old. all the baby toys will be gone, adeline will be able to get her own snacks (hopefully) & she may even be pooping in the toilet! GAH! amelia may even be potty trained by then! & hopefully both will be better at communication. i can hope, right? don't take hope away from me.

***

last night i started reading adeline a young children's version of the lion, the witch, & the wardrobe (by c. s. lewis). i wasn't quite sure if she was old enough, after the whole being terrified of finding nemo thing...but she was entranced. we read about 4 pages & she got about 1 inch from the pictures to see each detail. i would stop & ask her questions about the story to see if she was understanding & she did! she liked it! maybe in a few years we can bring out the real book & read it, then the movie.

here is a quote i found when searching for quotes for the blog banner. i just really like c.s. lewis

"Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make any sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of - throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were being made into a decent little cottage: but He is building a palace. He intends to come and live in it Himself."
— C.S. Lewis (Mere Christianity)

which is how it feels now, like god is doing some minor (or other days, major) demolition in my body, in my life. & i have to believe that it is for the better.

***
also, my favorite author: chaim potok. i just really like his writing & stories. plus the whole learning about yamachas, which is very exciting. he has a seriies devoted to the life of asher lev...which if we had had a son, that was going to be his name (until my sister named her *cat* asher...& also b/c wes denied jude/judah until he met our friends' son, jude, who is a great kid & then he was like 'i think i could've done 'jude' for a boy now. well...too late, my hubby!). anyway, here's an excerpt:

"Human beings do not live forever, Reuven. We live less than the time it takes to blink an eye, if we measure our lives against eternity. So it may be asked what value is there to a human life. There is so much pain in the world. What does it mean to have to suffer so much if our lives are nothing more than the blink of an eye?

I learned a long time ago, Reuven, that a blink of an eye in itself is nothing. But the eye that blinks, that is something. A span of life is nothing. But the man who lives that span, he is something. He can fill that tiny span with meaning, so its quality is immeasurable though its quantity may be insignificant. Do you understand what I am saying? A man must fill his life with meaning, meaning is not automatically given to life.

It is hard work to fill one's life with meaning. That I do not think you understand yet. A life filled with meaning is worthy of rest. I want to be worthy of rest when I am no longer here."
— Chaim Potok (The Chosen)

***

i really must go before the double a's devise & carry out a coup .

what the hell.

the past 15 hours i have felt like a did 2 months ago: like shit. really, like someone was squeezing my head & shoulders so hard that i was being crapped out of a large arsehole. which makes me a wee bit grumpy & just plain pissed about it all.

just last sunday in church rich nathan (pastor) was talking about how you can tell if people 'get' the gospel by how they react in a crisis, or when death is near, or when you feel like you're being pushed out of an arsehole (the last one is my personal interpretation, *smile*). at the time i remembered how peaceful i felt coming out of surgery; if i died i was so happy to meet jesus & felt peace about leaving my family. thankfully, that didn't happen, but i was ready, if that makes any sense. i was at peace with my life & things ending if it was to go that way.

so crapper of craps, where is that peace today? i don't think i'm dying, golly *no*. but i just feel sooo, you know, bad. i am so excited for our lives to return to normal w/ a functioning mom & wife in the house. so when i return to non-functioning, sitting in the darkest room shooing away my kids with a heating pad wrapped around my neck...i just feel pissed about it. one of the women on my soaking prayer team mentioned that god was saying i didn't think i would be healed fully, that i wouldn't return to pre-surgery heidi. & it's true, i don't think i will be as strong (physically), & i don't think my hearing will return or the ringing in my ear will go away & i don't think these daily morning headaches will stop & the killer migraines & not being able to feel half my face. b/c it all keeps coming & going. i do believe one or more things will be healed, but i have never had this vision of me being what i used to be. & that thought is just pounding into my head this morning: is this what it's going to be like always for me? is this a thorn in my flesh? how will i deal with this stuff if this is, indeed, the rest of my life? where is hope? peace?

sorry for this pissy post, folks. it just helps to write about it, i guess. i don't feel up to crying on someone's shoulder in person b/c that would mean admitting defeat in some way. i dunno what's up with me. denial? hhmmm... really, the only thing i can hope for is healing. whether it is emotional, the kind that will make me accept the healing that has already taken place & be okay & able to deal with my current situation (for the next 40 year?! if so, okay. really?!). or prayer that god would intervene & heal it all. wow, that would be awesome. so if you are a praying person, please pray that my family & i l feel more peace & less frustration. & that i would stop feeling like a squished piece of poo.

***

maybe i shouldn't have watched cnn news this morning about families digging their loved ones out of the earthquake rubble in haiti. that thought just can't leave my brain. i can't imagine that pain & loss. ugh, i just wish i could be there, helping, handing out water or doing *something* besides sitting here in my 67 degree house bemoaning my own problems.

the angst of it all...

holy counting, batman!

i am finally into part 2 of this adrenal fatigue book & it included a questionnaire about symptoms (past & present) & one symptom is brain fog or confusion or just inability to think at times. *bingo*, that's me the past while (i'm saying my date of starting to feel *differently* was at the beginning of my pregnancy with amelia). so i take the questionnaire & put the numbers in the spaces to add. my-holy-goodness do i suck at even simple addition! it took me nearly 2 minutes to add up to 62. i had to do 8 columns of addition! yes! thankfully one column only went up to 9 total points. i kept thinking where is wes when i really need him?! where is my human calculator?!

then, folks, then i read the directions which, of course, i should have read before, but, hey...it's just addition, right?! fiddlesticks, i did it wrong. seriously, why give such confusing directions to people with symptoms of confusion & brain fog?! i gave up & took a shower instead. (a hot-hot-hot one. think: hot tub jacuzzi water being poured onto your head for 20 minutes. blissful. & it really helps my muscles relax, which is great b/c i've been trying to get rid of a headache for 3 hours now. it's on the verge of a migraine, but i am fighting it off with rest, heat therapy (shower!), & drinking lots of water).

anyway, all that to say that i'm working on my goals for this week, so obviously the reading part is happening. AND after lunch i sat down to check my email & amelia walked up to the computer desk, pointed to it & then pointed to me & said 'mama'! i don't know exactly what she meant but i think she's catching on...

and. adeline was up around 5 a.m. this morning so after being home from school for 35 minutes (long enough to watch an episode of calliou--not my favorite for sure) & then tell me that the hot dog, pear, & hummus i had for her lunch was not what she wanted. she then went to the couch to cry & pout, so i let her go & she fell asleep! she's just now waking up & i am anticipating a very hungry preschooler.

***

last night i went to my church (vineyard chuch of columbus) for bi-monthly soaking prayer with my 3 ladies. what is terrible is that i can only remember one of the women's name! very very rude & horrible b/c they've been praying for me the past 3 months & i just now can't say 'hey, i didn't catch your names...' i really am terrible at remembering names. *so sorry my prayer ladies*. so last night was a goody & one of the ladies (whose name i know, but will not divulge) had a vision & i also had a vision that i believe was god-given (b/c i would not see myself doing this if it were not for god *for sure*). her vision was that jesus had a santa claus-like present bag & it was filled with gifts to give me. well, yipee! was my response. bring it on, eh? so more prayer occurred & then here it is, my vision : a jesus-looking man (lol, not white, blond, w/ blue eyes) was standing over a large burlap sack filled with something i couldn't see. i was standing next to him & suddenly he started to give me the things inside the bag & it was known to me that i was to give this 'thing' out to people. i look down & this 'thing' is a dead fish, the kind you would eat complete with the open eye... (*but i would never eat it, my friends, b/c i hate fish; all things fish disgusts me--even the aquarium kind. i'm not afraid of them, they're just gross to me. yea, may be girly, but...). back to it: so i realize i have fish in my hands & instead of being all grossed out i turn around see a large crowd of people sitting on a grassy hill & i start to hand out & toss the fish to people, who are eagerly taking the fish. & it went like that, jesus just kept handing me fish & i kept handing them to other people.

hhhmmm...now for the interpretation, eh?

***

i noticed last week that i failed to take a 4-month-post-surgery picture. but really, you can't even tell i had skull surgery. i guess if you took the time to look for the scar you would see it, but it's not like you can tell through my hair. which is good, that makes me feel less like a beacon of pity when i know everyone isn't checking out my scar & wondering why someone cut into my skull.

so. one thing i'm learning this past 6 months (since learning of that blasted tumor) is to take it easy...especially since this whole adrenal fatigue/fibromyalgia stuff really made my life miserable. i wouldn't consider myself a 'type a' person or anything, but i have for sure learned to just relax & take stress cues. but there are a few times throughout the month that i have a really hard time: monday evenings & the 28th of each month. driving home from thanksgiving, as i was sitting in the car with my eyes closed (to keep nausea at bay...why do i get car sick now instead of when i was little?!) anyway, i had my eyes closed & i just kept seeing & going through the whole morning of the surgery & waking up from it all. i couldn't stop crying & then it dawned on me: it's the 28th, 4 months exactly after my surgery. it just happens without me even knowing the date or whatever. so it's good that prayer went well last night b/c sometimes monday nights are just really terrible. complete with me crying & doing stress-reducing mind exercises or watching tons of tv or taking my pills early & going to bed super early. anyway, last night was the first of these certain days--mondays or 28th--that i didn't have anxiety remembering the surgery or crying for no reason, etc. so this is progress.

what is *not* progress?! me still having this terrible headache, adeline waking up & demanding to watch the dora dvd her grandparents mailed her (she says 'oohhh, thank you', sue & bruce) & then amelia also waking up, crying. all within 3 minutes. & it's only 2:40. not progress. i think i will take you up on that migraine pill, mr. medicine cabinet.

moving on

that's what i hope to do over the next 6-8 weeks: move on from this constant weight of *yuck* that has been plaguing me (brain tumor news, followed by the surgery, then followed by adrenal fatigue). i am so very ready to wake up & not take inventory of how my muscles feel, where it hurts on what level & then look at the clock the first time my arms feel like they are being pulled in opposite directions by two semis (sorry, that is just the perfect example of what it feels like).

i think i've had a glimpse of what is to come the past few days & i like it. baking a bit, not crumbling under pressure (from kids), only needing 10-15 minutes to rest when wes gets home (soon, maybe i won't need to rest, eh?). when i was pregnant i always said the best thing pregnancy did for me was make me appreciate my non-pregnancy body even more, meaning 'wow! did i feel so much better not pregnant, can't wait until i'm there again.' & i have that thought again, but this time 'wow, i can't wait until i feel normally healthy' ...

what this blip of illness has brought is an insight into chronic pain, chronic illness that most people my age do not experience. so i guess i'm taking it upon myself to let everyone know: it sucks! lol, but seriously, that quote or thought that youth is wasted on the young? well, i sorta understand that before, took advantage of my health...never again. it's not right to feel geriatric at the age of 29. (but, as a plus for wes, he has been able to see what our life will be like in 50 years, with me his geriatric wife on arthritis medicine & low energy levels. he says its not so bad. really?).

so i was at the gym doing my elliptical work out. i've now worked up to 18 minutes & have upped myself to level 7 (that used to be the level that i started/warmed up on...now it's my max out! see, things i didn't appreciate before!). lady #1 beside me gets down & starts to talk with lady #2 walking by...lady #1 says with a serious laugh "wow boy, i was starting to sweat, time to get off" & gives a disgusted look at the elliptical. lady #2 gives an odd laugh, like seriously? (lady #2 is quite the hard core work out person, sweat is just part of the package for her). lady #1 then goes around the gym, talking with others & laughing, lady #2 starts puffing beside me on her elliptical, sweating probably after minute 2. they are both around the same age...it just struck me, the difference of opinion & well, working out takes sweating. why even try if you're not willing to sweat?! so that's what i'm thinking about getting healthy: why try if i'm not willing to do everything in my power to feel better (including all the annoying stretching & then getting & actually reading this book recommended by dr im {adrenal fatigue}, then super-actually taking the advice of the author...

i have yet to put all these thoughts into a coherence mind view or theory or whatever, but there's sort of the idea that i'm tired of being this 'victim' ... i want to have the energy to play with my girls, doing fun things with them. *then* still having energy to talk & hang out with wes (without this look of exhaustion on my face) & then maybe even, then, do some volunteering for a church ministry. or something! something other than blogging about how i feel like shit b/c that is getting old & annoying! *smile* (now, to get ready for an appointment with a neurologist! fun times)

a show stopper!

i am writing this post at 7:51. b/c i was downstairs fully dressed (gym clothes/gym morning) & i feel sorta kinda really *RESTED*. hell-o melatonin! i wasn't feeling so optimistic last night as i tried to fall asleep & it seemed to take awhile b/c when amelia woke up crying at 10:40, i thought i had still been awake. but i had been asleep! & once wes left to care for the millie-monster-at-night, i fell back asleep immediately & the next sound i heard was griswold whining to get out of the bedroom at 7:20. i took my pills, turned on the electric blanket & waited to fall back asleep (my usual routine when i wake up feeling totally exhausted). BUT! i was like 'what's this weird feeling i have? do i feel okay, pretty good?' 10 minutes later i was downstairs at 7:32...awake, nearly refreshed, dressed, not in a stupor of tiredness.

i don't know how long this will last today, but i am now hopeful. i now believe that yes, like dr im said, i may be feeling better in 2-3 weeks & be fully back to myself around january. IMAGINE THAT! WHAT?!

i must go now b/c the millie-day-monster is climbing on my back trying to do two things: steal my breakfast (cream of wheats, we share a favorite love) & also trying to take over the computer.

so this is the *first* time i've said this in nearly 4 months: good morning!

good things. & a few annoyances.

what a day. i think i did an entire 8 hours of errands & appointments today (with a paid lunch hour! social workers never get those, so i take it when i get it).

first, let me say that wes is *impressed* with dr im. i think his words are 'this guy's sharp' which is a compliment coming from wes. the gist of this appointment: I DON'T HAVE ADDISON'S DISEASE! i swear, i felt like i was suddenly lifted to a cloud when he said that. *PHEW* i just have adrenal insufficiency & fatigue. i tried to find a good website to share, but the gist is that my cortisol level is flipped: i have ultra low levels during the day (making me exhausted, weak, & my muscles hurt like someone is pulling my arms apart with each arm tied to a different semi going in opposite directions. it hurts, trust me). then between 9 & 10, my cortisol turns 'on' & starts pumping, not allowing me to get a solid, steady sleep. there's much more to this whole diagnosis & although some doctor's don't acknowledge it as an actual disease (it appears mostly older docs), well, it seems to fit my problems. so dr im doubled my cortisol meds. which, by the way, since it's cortisol--yes, a steroid, but not in the traditional steroid medication sense, i don't get the typical 'roid side effects. i'm not going to get all pimply & bulge with muscles & have severe anger outbursts. i will just be able to get up in the morning & feel rested. WOAH! what an idea.

so i'm also taking melatonin to help me sleep at the right time. & folks, this was the best part & if wes wasn't there i'm not sure he would believe me: i am "prescribed" to get at least 7 uninterrupted hours of sleep at night. yes, that means heidi doesn't get up with kiddos 1 or 2. sorry wes! i guess the time i spent nursing adeline in the middle of the night & then crawled back into bed where you were sleeping (after you changed her diaper for me; i remember that part, too!)...i mean, adeline could *nurse* at night, for nearly an hour each round. ugh. anyway, i am to sleep like my life depends on it b/c it...does. (if adrenal stuff gets out of hand, that's when an adrenal crisis hits & addison's would come into play...hard to think this is the easy version of it all).

so that was doc #1 visit. it went good. i was given 30 minutes of face to face time with a doctor who asked & answered all questions & then even prodded us to ask more. he even gave us another round of medication samples & then handing the bag to us smiled & said "merry christmas" (seriously, the meds he gave probably total about $100, egads).

doc visit #2. i waited in the patient room for *AN HOUR*...then one of dr welling's 'fellows' came in to chat & check my vitals & read my hearing test. he was very interested in the adrenal insufficiency stuff & knew what i was talking about & even said that the surgery probably put me in this adrenal position (even with a previous adrenal insufficiency). he also said as far as the surgery goes, i am doing amazingly well. the surgery site is in stellar condition, my hearing is actually at a normal level (but since only 1 hear has hearing loss kinda makes it hard to hear in group settings)...i'm still hearing at an 88% clarity level in my left ear! that's awesome & not expected at all.

then another 10 minutes later dr welling, surgeon-extraordinaire came in. now, he is a very nice man, an excellent & well known surgeon & has very good bed-side manner for a world class surgeon. BUT he treated the adrenal problem like it was silly, just take an ibuprofen would ya? i was a wuss, folks, i didn't respond curtly or correct him. b/c really, he is only a surgeon at this point & although he *should* have a doctor who follows patients post-op, he did his job. but i can still say i am dissatisfied with his care post-op. gosh, i don't have to see them all for another 5 years, though! & he was so very impressed with my walking & balance skills & said my hearing levels are way above what they would expect. this dude is so far into optimism that i couldn't remind him that the numbness is sometimes painful & always persistent & i didn't really have migraines like this prior to surgery. GAH.

anyway. on to good things that don't involve a phd.

this is the tea kettle that wes & i bought at an antique store last saturday. you could say it's our 6th anniversary gift to each other (& before you say "pathetic" i guess i could count the scanner/copier/fax/printer as wes' gift?). i do collect tea pots & kettles (this has been decided this past year only, but i have 7 of them!)

here is my hair cut (after a long day of here & there, so it's a bit messy, but you get the idea)

& here is the apron i also found at that antique store. i don't think the apron is an actual antique, but, still it's cute!

amelia & her daddy snuggling & wrestling around in addy's pile-of-all-things-soft-on-the-top-floor.

& yes, a shout out to paige, a fellow acoustic neuroma (brain tumor) survivor--it was a year ago that she was in the ICU recovering from her surgery. i'm so glad i was able to meet you... it has helped me immensley. congrats for coming through this brain tumor stuff with your sanity intact!

cover your ears, shield your eyes...i am *pissed*

so i'm taking this medication that i've mentioned, celebrex, to help with this intense pain i've been experiencing for about, oh THREE months now. i've finally found something that helps that isn't eating my stomach lining away--plus i feel 50 times better than i do when taking ibuprofen (which is the med that is eating my stomach away). dr im gave me nearly a week's worth of samples to use, just to be sure this works for me before i fill the prescription (b/c there is not a generic out yet, so it's muy pricey).

today on our way out of town for the afternoon we dropped the prescription off. then returned home to get a message from the pharmacy explaining that the insurance has to have this dr approval. so i call the insurance company: closed. i call the pharmacist who explains very plainly to me the situation.

it's like this: the insurance company doesn't want to pay & also doesn't think i *need* this medication b/c i don't have a diagnosis for any type of arthritis. SO in order for me to get this medication paid for by the insurance dr im must call & make a case for me needing this medication.

are we getting this? our insurance system is so fucked up that they are making health choices for ME. they think they know better than my doctor?! or myself, the one taking & filling the prescription?! how in the hell is it okay for these companies to get away with this? simply b/c it hurts their bottom line, their goal of somehow making money off of people's health problems?!

the pharmacist asked if this helps & said that from what she's heard from patients that celebrex is an excellent pain medication, especially long term. she apologized several times & just more than several times, this just isn't right how insurance companies can make these decisions. i was like HELL NO IT'S NOT RIGHT.

i wish i had the superpower to transfer pain & illnesses so these whacked out, money hungry insurance folks can finally understand that people aren't just trying to suck them dry; people *need* these medications. it has helped me in so many ways.

what's funny is that dr im talked about avoiding stressors right now until he can find the root cause of the muscle pain b/c stress is a huge stumbling block when it comes to alleviating headaches/migraines, pain, etc. & then he is able to fit a medicine to my pain & then the insurance co gets involved & fucks it all up. nope, not under any stress now. so what, i just sit back & lovingly suck down 6-10 ibuprofens, nursing ginger ale & ginger tea & bread all the days until the insurance company makes up their mind (& then even then they may not approve it?!).

please don't tell me that the insurance & health care in this country don't need a fresh start. this is bullshit. insurance companies are making health decision for their *clients* b/c that's all we are to them, a client, dollar signs. if they don't make a profit off of me for the year, then they start forcing me to cut back on necessary medication? WHAT.THE.HELL.IS.GOING.ON.

$293.50 they are willing to fight over that when we (plus wes' employers) pay them how much a month? again, i think WHAT THE HELL IS GOING ON?! when is capitalism okay when it fucks with people's health & quality of life? & for fuck's sake, the insurance company isn't even opened on the weekend! how they hell are we to get this settled any time soon. i am out of samples. i am so incredibly amazingly pissed. beyond pissed. like ready to drive out to flippin' idaho (where this insurance co is based) to sit down with the CEO (i would take this CEO to asiago's, at least) where i would then grill him or her about their medical history & by god--is it worth it to take that medication? what is your quality of life? how much do you make every year? what is your social security number & what are your existing conditions? have you ever had surgery? have you ever had such severe pain you couldn't move your neck? have you ever been so exhausted from *sleeping* that you couldn't get up in the morning? i'm sure i'd throw some fuck you's in there somewhere. this is absurd.

i'm sorry for the rant. now to get stuff ready for beggar's night.

3 months

last week marked month 3 since harold-removal surgery. i can't believe it's been 3 months! & i still feel like crap-ola!! that i can't believe as well. i didn't expect to *POOF* feel better, but this feeling worse for the past 6 weeks has really put a damper on my outlook.

here's a shot of the incision site. yes, my hair grows pretty darn fast, as every person who's ever cut my hair more than once has told me. you can barely even see it, eh?

here's a closer look at the bottom of the incision, which starts on my neck & goes up nearly my hand length.

so what's getting worse? well, my facial numbness is slowly creeping back to the same locations that were numb nearly right after the surgery. for example, my lips & tongue weren't numb any longer & over the past month the numbness has come back & then once it's back in that area, it continues to become more numb. yes, i'm freaking out about this b/c *holy hell* what if it's going to stay like this my entire life?! i don't mean to be all doom & gloom, but numb lips & tongue mean i can't taste food very well (most things have a metallic taste, especially water) & let's not even open the can of worms about kissing my husband...try kissing right after you've had dental work done--there that's about as wonderful as it is. plus the migraines & headaches. & dudes, the right side of my body (opposite the surgery side) is screaming this to me: SLEEP ON YOUR LEFT SIDE, I'M SQUISHED! my hips hurt from sleeping in the same position (when i sleep on my left side--wow--do i get a headache & general head & neck pain after that, even if i was sleeping or laying on the left side for 2 minutes). my energy level is at about *zero* & my pain level about 7 (for those who've gone through painful experiences, yes, ouch!) when i don't have some sort of anti-inflammatory in me.

i know, i'm happy to be alive & have harold out of my brain. i'll shout it: I'M ALIVE! I'M HAPPY TO BE ALIVE! I'M THANKFUL! I HAVE JOY! I HAVE A TUMOR FREE BRAIN! but according to my surgeon, these side effects are not normal, especially lasting this long. my continued pain level is not normal. the migraines are not normal. & here's the hilarious part--he doesn't think it's something he should deal with anymore! what? he's only done over 800 of these surgeries & he doesn't know what to do when a patient has side effects like this? so they recommend i go to a neurologist. & who they recommended isn't even at osu b/c osu neuro's are booked solid for 3 months (including the one who drilled into my skull). it just seems that i'm getting *the great brush off*. but this time they're not being stupid enough to say 'it's your hormones'. maybe b/c they know that side effects of this tumor & surgery are mood swings (seriously) & yea, telling me something stupid is just not a good idea right now. *smile*

so...i am thankful to have had this brain surgery with two world class, experienced surgeons (plus wonderful anesthesiologist, dr gupta! let's not forget him...he was so wonderful). but if it's one thing that the brain tumor has taught me: i'm the only one (well, & my family) who's truly concerned about my health. i'm the one who has to push for answers. b/c medical professions seem to care about the big procedure, the life threatening stuff. not the stuff that makes daily life difficult or miserable or is difficult to diagnose.

i just have to say this: our health care system may need reforming for financial reasons, but it also needs a reform in patient care. dr's need to stop getting into medicine to make money & be recognized. it needs to be b/c they want to see their patients become healthy on their watch. i went into social work b/c i wanted to help people. psychologists/psychiatrists do their thing b/c they want to help people & have much better follow up than all the medical dr's i have ever seen. the part missing in the whole debate about health care reform would be patients' rights & advocacy (well, except that whole deal with the elderly quality of care or something). it's hard for me to believe that i just had brain surgery 3 months ago & now am having some sort of complication or side effect & *no one* from the hospital that i just had this surgery at has the office time to see me. ABSURD comes to mind. FRUSTRATING. MADDENING. i'm not a big fan of political action committees, but folks, am i ever ready to start one (if i felt well enough to do this, lol--this is why patient & surgery recovery isn't on the menu! b/c we're all too busy feeling like shit to be able to do anything about it!).

***

okay, okay, i'm done. stay tuned tonight or tomorrow for beggar's night pictures (tonight!) & a visit with my grandma today. i just got a call from my uncle (whom my grandma lives with right now) that she put together one of her *famous* apple pies for our visit. i just have to put it in the oven. yum yum yum.

i am a terrible patient

this morning i woke up at 5:42 a.m. with The Stiff Neck that shows all signs of turning into a migraine. so i laid there on my propped pillows wishing the migraine away...but it hit me hard. finally, around 6:45 i believe, i was able to fall back asleep. since none of you folks are my doctor(s) i will spare you all the details of these migraines. just know that it hurts (& i have a very high pain tolerance--so say dr's). after a migraine i am *wiped out*, beyond tired. think been awake for 24 hours tired. luckily, today marks only the 6th & 7th migraine of this caliber.

wes woke me up an hour or so later & mentioned that he needed to get to work for a meeting & he had a cup of coffee for me--good man, yes. usually once the migraine is over, the ibuprofen in my system for an hour, & a cup of coffee is down the hatch, usually i feel better. but after moving around for a bit, another migraine hit.

long story short, wes missed his meeting & drove the girls to my parent's house until tomorrow. i've had this headache for 8 hours now. i tried to go back to sleep but--& this is the near silly part--i miss my girls. i was looking forward to hanging out with them today, inside on the type of rainy day that i love. & now they are with their gram mum, my husband missed most of a day of work, & i'm in some intense pain. but i can't sleep!

harold has taken so much from me & i just want to feel normal again. to wake up feeling refreshed, not exhausted. to not worry that a headache or migraine will screw up my plans, to be able to hold my baby when she wakes up at night from teething. instead adeline knows to be very quiet when mama's 'owie' hurts, but will still cry for me, breaking my heart as i'm lying in bed trying not to listen to wes battling it out with the girls (did i say yet what a great man, husband, father he is? well, he's all that *plus* a bag of chips, you know).

the other day after recovering from another one of these lovely migraines (yes, that makes 3 this week...i'm so getting better, eh? as addy would say: no, not) i had this vision of doing normal things, with joy. i saw myself getting up before wes, before the girls & making breakfast (banana pancakes) & then getting addy ready for school & taking amelia grocery shopping, then home to watch her start walking around. i saw myself making dinner & teaching amelia to roll the ball around & practiced with adeline her speech cues. wes & i were both cleaning up the basement (what he's working on right now in the evening for 20 minutes, starting somewhere, as he says) & laughing about the girls & general things.

i don't know why i saw all of this. i do know it's making me very sad today b/c that vision is the furthest thing from reality right now but it's what i want. & when i am feeling good again, i want to be able to read something like this & remember how terrible things were or things can be. i never want to take for granted general, every day life anymore. i don't want to feel guilty that i live in america & have so much (b/c how can i be happy if i feel guilty constantly?). i want to be able to reach out to others who are going through what we as a family have. i'm tired of sitting around waiting for the surgeon's assistant to email me back about what to do (& then finally when they do email me back, give me an appointment with a neurologist in 4 weeks. that could mean 12 more of these migraines if this week is any indication of a pattern). & i am joyful doing every day things. i am thankful for the every day situations... you know, thank god my tumor was benign. thank god my surgery was a success. thank god for doctors who *hopefully* (LOL) will help me heal completely. thank god my mom was home today & that my husband's job is flexible enough to let him stay home when i can't do my own 'job'.

i have such mixed emotions over all of this...i feel i've been hit with immense joy the past few weeks. in fact, during soaking prayer at my church god told me, like i was sitting right beside him, that i will have joy, that i will experience joy like never before. which is saying a lot b/c i've been pretty happy in general (aside from teenage angst & anger about social injustice *smile*). but then again, these past 4 months have been highly shitty (very technical term, i know), with patches of shittyness for the past 4-5 years (tumor stuff, you know the passing out randomly, dr's not believing anything was serious, etc).

if you believe in the stages of grief, well, i think i am moving into anger. angry & joyful at the same time? hhmm, possible. i want my life back, i'm tired of staying mostly at home being sick & stuck to the bed in the morning. i want to fight *this* now. not that i have a cancer to fight or a disease per se, but i apparently have to do more to get healthy again. maybe the wrong surgical approach was chosen--maybe i should have had the belly fat put into the tumor site after the tumor was removed. maybe then my nerves wouldn't be moving around as they are (according to a 'fellow' of dr welling), causing the numbness to come & go & possibly (my theory) causing the migraines. who knows!

but this is a perfect day to be joyful & angry at the same time. it's raining all day. which is good for ohio, good for water levels, etc but wet feet are sure annoying. & it's kind of funny how our tress will suddenly drop nearly all their leaves on the same day...it just seems life is filled with so many good things like kids & babies & season changes & baking & books, why wouldn't i want to feel better?

okay, i think i can attempt a nap again now that this is put into words. & it's now time for another round of ibuprofen *sigh*

one month

today marks the first month without harold. *sniff sniff* you're not missed.

this week has just zoomed by somehow & now it's friday & i'm glad. but everyone's in a testy mood for our own various reasons, making life a bit tense right now. but! adeline is 95% sure getting into the westerville school district special needs preschool. yippee! hello--she'll get speech therapy daily, plus any other therapies they see she may need. did i mention it's free? well, $15 a year for fees & whatnot but wow did that come as an answer to prayer (what a does a pay decrease + insurance coverage decrease + speech therapy costs + private preschool =?? too much for us to afford right now) so getting preschool & speech therapy all at once at public school is amazing & a godsend. PLUS she loved the teachers & the evaluators...it was the first time she had left with someone new that she didn't scream, cry, & throw herself into fits on the floor. wes & i were in a separate room & i kept waiting to hear her screeching from afar but it never came. when we met up with her an hour later, she was *happy* & laughing, playing with the speech therapist. & now she's excited for preschool...

we have her determination meeting monday morning. this is where all the evaluators/specialists meet up with us & the preschool coordinator to decide if she indeed qualifies for the preschool. if she does, then an IEP is written (oh joy. i've sat through enough of those iep meetings from my last job to know that fun is *not* coming). then she will start preschool either on her birthday or the following monday. (her birthday is sept 25). my baby is going to preschool?! FIRST #1.

FIRST #2: amelia walked. on her birthday. she just stood up in the middle of the floor, gave a huge smile & took 3 steps to adeline, then grabbed onto addy & fell to the floor. it happened in all of 10 seconds. but i caught it on my mama-memory-cam & there it will stay, hopefully forever. she hasn't walked since (well, i don't really know b/c i don't see her constantly & if the walking spells only last 10 seconds, well...there's a good chance we've missed it a few times).

***

what does one month post-op for a vestibular schwannoma surgery mean? well, my left ear has a moderate to low ringing, i can walk almost at a normal pace (sometimes, when i'm not very tired) but i'm tired a lot & a bit grouchy when the muscle pain is intense...which happens at least 2 or 3 times a day for various reasons. basically, i just need more time for things to heal. i had the 4 week post-op check up with dr welling & he said i was a great patient & doing amazing, that i looked nearly like a civilian (normal?). i dunno if they say that to everyone (care to input paige?), that they're great patients, etc. but for sure what they wanted to take care of before he appointment on thursday: payment. our balance of $1356.00 needed to have a payment made or paid in full. *gulp* it's just hard to see that chunk o change go, but we got it over all at once. i mean, the true amount of my surgery & hospital stay is still being worked out, but it's around the $150,000's now. yowzers. yes, i will pay $1356 instead of that previous amount.

i just have to get through this time. i keep telling myself to look forward to the holidays, when i will be feeling better (from what i've heard from other patients, the dr's, & also others who have had surgeries). it will be 5-6 months after & hopefully i will feel nearly 100%. even better, i will not have a brain tumor lurking in my skull, so i should feel even better than i used to. yea, i'm looking forward to that times 100.

***

it has been discovered that adeline has a severe allergy to walnuts (via a blood test). we also know she has a severe reaction to pine nuts & pecans. if you bring those into our home, you will be disqualified *smile* but really, we're trying to figure that all out. since she eats almonds, (also a tree nut) in the morning in her cereal & has eaten peanut & peanut products since 18 months without an issue, we are hoping to only find that she's allergic to those 3 tree nuts. but we have a few epi-pens for her, which freaks me out & benedryl always on hand.

then she recently had a round of urinary tract infection symptoms for quite a while & was taken to a dr & urgent care, etc & finally given medication for it on last week. she's doing better but now her ped wants to do an ultrasound on her kidneys & a catheter with dye contrast. to make sure she doesn't have this sort of reflux idea going on with her urethra & kidneys. wes & i nearly said a big N-O, especially since there's nothing to give her for the pain & discomfort of the catheter, plus the fact that addy won't let ANYONE near her vulva to begin with.... that appointment is on monday as well. maybe i'll tape the screaming & crying & send it off to be used for some slayer/slasher movie b/c that's how intense this will be. but the last time we almost blew off a dr's recommendation, my MRI, well, let's just say we're happy now that we went ahead with it...wish us luck! & wish us a better weekend w/ less grumpiness all around *smile*

be on the lookout

yes, folks, be on the lookout for a *CRAZY* white aztec driving around near westerville! as of today, i have permission from my surgeon to drive...yes, do you feel that fear in you? well if you live near me, you should feel the fear. b/c i DROVE TONIGHT! i switched with wes on our way home from dinner (wes & i are way too tired today to cook. me from surgery recovery, wes from waking up with amelia at 5:30)...we were in our neighborhood, probably for a total of 2/3 of a mile, but still, *i drove*!. so, when there are no cars moving around me & i don't really have to turn my head, i'm okay to drive. otherwise, it's probably not such a good idea. i think i may have to wait another week for the safety of others & those in my car.
***
somehow in the past month, my youngest daughter has been switched with a monkey. or maybe it's an alien that will soon reveal itself by pealing off its fake human mask from the neck, revealing it's green googly eyes & cone head (that was exactly what my sister, as a young girl, thought of my parents when they were sleeping. we were just swapping parents-as-aliens stories the other night. & i thought i was extreme for thinking their eyes were green at night. geez!). anyway, amelia is quite the acrobat & climber. she's not walking yet but has this weird ability to scale nearly anything. today a book was propped up against a side coffee table/cupboard & she was climbing it--a book--to get on top of the table! i wasn't there to witness it, but i believe she was successful. she can climb our outdoor slide 7 feet up to the top, then she can also climb the steps of that slide, never mind the indoor stairs (that was *so* last week, y'all). it's as if her body will just suddenly stick to anything in order to get to her desired destination. OR she will completely do a head dive-bomb off of the couch or any elevated item onto the floor. thankfully, she puts her hands out first (when her head digs into the floor, she doesn't mind). she also appears to be attempting somersaults dives from the playroom mattresses (one is up higher, then the lower one is right beside it, on the floor. THESE ARE THE *BEST* TOYS EVER. I PROMISE YOU THIS. people of all ages like to jump on beds, right?). i believe she's learning the somersault trick from her sister, for sure not from me. crazy kid.
***
& my arm is now sticking to the table as i type b/c adeline sat here & watched dora on the nick jr website & ate chocolate ice cream...my phish food! (gasp, precious commodity). so this was our first day alone with the girls & we did pretty good. we even did our usual cinnamon-rolls-for-breakfast saturday morning tradition. i put amelia down tonight (then wes had to go in a bit later to calm her down after she woke up from her 2 minute slumber...i can't yet do the bopping around while holding her to get her in sleep mode). the house is a MESS, we ate out for dinner with a gift card from neighbors but we are not crazy-eyed & sobbing into the phone, calling my mom begging her to come back NOW ... that's tomorrow, *smile*. i am now yawning uncontrollably, so i'm off to bed. i just wanted to give a fair warning about the blond driving maniac around westerville. psst, i heard she just had brain surgery & isn't stable; watch out for that car. *wink*

restless

this morning i woke up feeling just plain miserable. i had slept in until--GASP--9 a.m.which means that i missed my 7:30 a.m. dose of acetaminophen. so my muscles were so sore that i could barely turn my head left or right or move my shoulders one iota. my head was pounding with the typical post-brain surgery headache. etc etc blah blah.

finally, the coffee kicked in, as did the meds & i felt a bit better. we (my mom, the girls, & my 13 year old cousin, matthew, who is addy's new best friend) did an outing to the westerville rec center...where adeline tore it up on the indoor playground. such intensely happy giggling.

so on the stages of recovery, i have hit whatever number it is: restless. i want to be better, *now*. as the nurse said to my family as i was coming in & out of anaesthetic, "she's {me} a fighter. that's good for long term recovery, but not good for short term recovery" then finished her sentence by pushing more morphine into my iv line, kindly sending me to sleep. i think she was also the one i was mumbling & arguing with about the catheter (sorry, nurse. morphine, what else can i say?!). this restlessness is good, b/c next week my mom is returning to work from monday through wednesday & i have folks here off & on during the day but this starts my shift from patient back to full time mom. i'm excited & terrified.

oh, what to name this post?

amelia typically gets an afternoon snack in her bumbo seat...which works out great, except when she smooshes the raisins into the two divets in the tray that are supposed to hold a spinning toy (that we never put on there b/c she tears it off & wings it across the room). use of the bumbo has ended, as of this week. the other day we placed her in it for her snack, left the room & i came back in a few minutes later to find her crawling, still in the bumbo! that was the largest baby bum i have ever seen wiggling around. *smile*


& i don't have any pictures (yet, they're on my mom's camera) but adeline *loves* to play in the rain. so last night, during our constant light rain shower, adeline & i went to sit on the patio to watch the rain. she got a bit ansty & i suggested she play in the rain. she did, gleefully. then she tried to get me in the action, but i somehow convinced her that daddy would be a much better playmate (he was). after this my mom has taken to calling her a shawnee indian warrior princess to which i reply (with a smile) 'we use native american in this house'.
***
recovery. i'm trying to figure it all out this week. what are my limits, what is the purpose of this tumor/surgery/recovery in my life, do things just happen b/c they happen or is there a reason, why is it that a medication will make pain 1 feel better but then cause pain 2 & pain 3 to worsen or begin??? all these questions. i know, i just can't let things happen; to me there's a reason. at first i was angry with god that he let this happen to me...now i'm a bit passed that *wink* but still trying to figure it all out. hhmm, where am i going with this?

well, i have reached the 'exhausted' stage in the 29 (or82?) stages of surgery recovery (according to heidi). every new hurdle i'm learning to deal with, slowly. the face numbness is more of an annoyance. the imbalance i can predict. i know how fast (or to normal folks, how slow) i can turn my head to avoid sending the room spinning. every 3-4 hours i take over the counter pain meds for the HOLY CRAP painful muscles & know when they will start to hurt again. the newest is the exhaustion...it just hits me, at about, oh 9 a.m., lol. & i can't shake it. this morning i drank 2 full cups of coffee to off set it & instead of being more awake, i got the shakes from drinking too much caffeine. i tried to take a nap but instead i'm restless & thinking about being wheeled into the operating room, waking up from the surgery the first 6 times, seeing wes by my bed crying.

i especially remember the moment i thought to myself: i could die now & it would be okay. b/c *HELLO* that's not a good thought! how could i think that?! i'm for sure not suicidal & i really love living. so what i think is that i was in the most intense pain of my life, but also on morphine to cloud my brain up a bit, my family had just seen me for the first time & they had gone. the nurse was trying to explain to me why my face was numb & why i couldn't get up to pee (i tried to tell her to pull the catheter out several times & she was very kind, but was like hell no you are not getting up & i would mumble but i have to pee on the toilet...) & the older lady near me kept doing these terrible smelling farts. anyway, during this time i thought about adeline & amelia & wes & how they would have such a better life if i was with jesus instead. b/c i was in so much pain & didn't know to just let the pee *go* into the catheter & my goodness would that mumbling older lady ever stop stinking the room up (this was in the surgery recovery room, which i was only in for about 8 hours i think). so i keep trying to make myself believe that i never had this thought that dying right now would be okay for everyone. so to STOP denial, like a good old social worker will, i will just tell everyone about it! duh.

at the healing prayer last monday one of the women praying said that somehow this tumor & surgery & recovery was going to be used to further god's kingdom. before the surgery, another friend told me this as well. all i'm thinking is 'why this?' why surgery...why can't god just land 100 acres of land in my lap so i can start the settlement house of my dreams, complete with a farm, grants that will send the families to college or a trade school, houses on the land, etc (i don't really want to go back into social work unless i can do something like this. so there degree & license).

but i think now i'm sort of getting it. throughout this whole harold diagnosis i have been keenly aware of the response people give to my situation. some retreat, some come out of the woodwork, some come to the rescue (think: parents & siblings!), some are distant or steadfast in their outreach. you get the picture. what is best is when someone has gone through a trauma of any kind & can *relate*. maybe i am supposed to relate to others going through traumas? i don't know, this is just what keeps coming up.

there are so many things that fall through the cracks after a surgery, or any trauma...but in our world, or in our family or circle of friends sometimes people don't take the time to notice or care or reach out. i have been shocked of who shrinks back, not wanting to engage in this recovery. maybe it's b/c i have decided not to hold back & give white lies that 'all is well, god is good' (well, god is good, but that doesn't mean all is well. coming from a grace brethren church background, that may make sense to some of you, lol) & then i have been shocked by the stamina of others to reach out, even when their own life is crazy. sooo....there you have it. this is why i can't sleep today! ARRGH.

music to my ears

as you may remember, i have what's called 'tinnitus' in my left ear (ringing in my ear). it was not very loud before surgery, enough to notice it, but not loud enough to be annoyed. well, after surgery, it sounded like a lawn mower for about 10 days, then it's been getting a bit better. now it just sounds like, uh, ringing in my ear.

BUT when i try to go to sleep...things change somehow. during the first 10 or 11 days, when i tried to fall asleep the ringing also included MUSIC. yep, music. as i lay there, with my eyes closed & my body medicated i would hear music. at first, it was classical music. i think i heard some chopin, the 1812 overture (complete with the loud drums), & various other classical songs that i've heard before. then i began to hear more contemporary music...even country, like the bonjo kind. then i heard african drums & chants. the last song? ABBA, dancing queen. it was on repeat for about 45 minutes before i finally fell asleep. (note: i do NOT like ABBA, much to my friend, judy's dismay, so i found abba the worst of all, even more so than the banjos!).

so what's going on? first, remember during this time, i was on some heavy pain meds! my thought is that the ringing in my ear was being interpreted by my brain, a brain that's not used to this noise & is tired & medicated...so while trying to figure the ringing out, my brain conjured up some music that i've come in contact with over the years. i ran this by my brother in law, the dude who knows a lot about psychology (as he is a therapist/psychologist) & he thinks my theory sounds fairy right on. my brain is trying to make sense of something & then spurts out a familiar thread: music.

my favorite? classical...come on, i was trying to fall asleep! the drums certainly weren't the best sleeping music, but were fairly entertaining to listen to...

now that the ringing has become less audible (read: no longer sounds like a lawn mower), when i'm trying to sleep, it sounds like there is water running. the first time i heard the water instead of music, i got up out of bed & checked the bathrooms upstairs (no water running). i then thought my mom was probably doing dishes or something of the sort downstairs. after 15 minutes, i was like 'why is the water still running?!' & then it hit me that with my new hearing loss, i would NOT be able to hear my mom running water downstairs, or pretty much hear anything going on downstairs, especially since i sleep with my right, fully hearing ear down on the pillow & then have another thin pillow over my head (i've always slept this way). so yea, DUH. so now i have to pee before i try to sleep...b/c water running = time to pee!
***
later today or this weekend, i plan to post a bit about the girls...it's been difficult to sit back & watch them play, grow, & be taken care of by someone else (even though that person is my mom & is an excellent care taker of not only the girls, but me...& my house!). so while observing the past week & a half, i have many stories to share. & a few pictures.
***
my hair cut went well! i just have to say that i love my hair stylist. i'm sure one of these days i'll get a pic up.
***
we just got word from a pediatrician appointment (my mom took amelia in while i napped!) that amelia is getting her molars in already...that's why she's been so very grumpy recently. this is going to be painful for the wee one.

accomplishment

i just took a walk around the U-shaped cul-du-sac ALL BY MYSELF! last friday, on a 1/3 mile walk to the neighborhood park, my brother & mom had to point out every large crack for me, so i didn't trip over anything (yet, i still tripped once on a large crack & stumbled a bit up a hill). so this is HUGE. and i had to take a rest after each leg of the walk...& here i am, energized instead of tired! still, i have to learn to look around at things while moving...non-moving objects seem to be moving very fast around me still & i *really* need that to stop, for the sake of future driving, walking & so my stomach will stop getting nauseous during car rides.

anyway, i just thought i would share that with everyone. i know i discuss how annoying the ringing in my ear is & the facial numbness, but other things are going well. plus, as my doctor/surgeon pointed out, i do have a slightly crooked smile right now (which may or may not straighten out) BUT very famous & sometimes beautiful people have crooked smiles. he gave the example of bill clinton...i think that was an example of a more famous than beautiful person *smile* & today was the first time i noticed, that yes, i DO have a crooked smile & it's not so bad. sort of looks *smirky* & that's just unique enough to be okay.

now to figure out how to type a crooked *smile* lol.... hhmmm, ~smile* ??? does that work? `smile~ ?? any suggestions?

tired.

tonight, we are all tired. but i think this is good b/c it's being tired from doing things that are good. like going to the library. & adeline having a playdate with the crawford boys this morning at mcdonald's playground. & amelia deciding that she is superbaby who can crawl any sort of obstacle (we again found her upstairs, rummaging around...no one can remember who left the gate open).

i am feeling better in general & people who have seen me in the past few days say i seem much more myself. i think it's b/c there's not a lot of pain meds flowing through my veins now & that seems to help my mental & physical functions greatly. however, i get tired suddenly & it hits hard & then i start to hurt. but i'm doing a lot more than i anticipated i could do 2 weeks post-op.

saturday was a bit of a set back, sadly. right after the surgery the left side of my face has been totally numb (i've talked about this before, eh?) BUT the numbness has been regressing towards my left ear, leaving my eye, forehead, nose, lips, & most of my tongue not numb. good things! within 1 hour on saturday, i regained all the numbness plus some. so i freaked out. of course! i mean, i can barely taste food again (total bummer) & half my face feels like its not my own (which is *weird*). but i got passed that with the help of wes, my sister & brother-in-law (who's a therapist, what better timing for him to come for a visit as i'm totally bummed about this sudden numbing & he gave me a great mini-therapy-session...folks, he's *good*). i called OSU's ENT on-call & that doctor gave me some good info. i feel a lot better about it now, even though the numbness isn't much better from saturday. i tell myself "take heart, heidi, statistics show this will go away in a few months". i mean, if this is the worst side effect from brain surgery, then so be it. i have my wonderful life to live with my hubby & girls & family & friends & all that shizzaz. viva la viva! (i think that was totally wrong, but who cares?)
***
today we ventured to the library where *sadly* adeline couldn't find any dora books (how can all 48 dora books be checked out?!) but she did find a very large book filled with dozens of curious george stories. *sigh* i was trying to hide the two copies of that book & she spied it before i could throw them to the other shelf. i love that she enjoys reading & that she laughs out loud to curious george stories but they ARE long & when drool starts to come out of the left side of my mouth as i read her these stories (drool that i can't feel until it splatters on the page *gross* & yes, *funny*) well, it just makes for a long good night story time & an even more numb mama.
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my mom is still here helping with EVERYTHING. which is so great & we get along really well. some time during my adolescent years i learned to be very honest with her (not so much in a good way then) so we're able to function well with each other now. she can usually see that i need a rest & i then agree (she says i'm a good patient b/c i take time to rest & regain strength) & off she goes playing with the girls, doing laundry, making lunch, bringing me water or tea, trying to figure out where everything goes... i am not looking forward to her leaving which i guess means i'm not fully healed yet b/c i'm guessing when i'm ready to take over mothering/housewife duties, i will send her home happily. but i do think she misses my dad & my dad misses her. whoever decided to have mapleton school district (where my dad teaches) start mid-august is STUPID. so there. b/c if they didn't start so soon, my dad could be down here also! doing things like teaching addy that farting means she's shooting ducks. & when she's shooting ducks, she's called BUBBA. lol. it's pretty funny to hear adeline call herself *bubba*. she can shoot ducks with the best of them, lol.

& tomorrow is *the hair cut day* for me! egads, what am i going to do with my quarter shaved noggin? my sister is taking me & so i think there will be much deliberation over what in the heck style to choose. my hair is too short to just cut across & let it go unnoticed. (if you remember, i found out about the tumor right AFTER i had my hair cut short. great timing, eh?). maybe if i'm feeling zany i'll post some pictures. someone mentioned a pink dye job may be in order. i dunno about that; been there, done that...after a few washes in my blond hair it looks peach, sooo...
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one sad thing that i need to clarify...yes, i can hold my girls while sitting & i've even ventured into holding her while standing (she's only 21.5 pounds & the cut off for me to lift/hold is 20). BUT i have a monkey for an amelia & she just doesn't let herself be held for longer than 29.2 seconds before she spies something she wants to climb or chew on. she is in a walk & show stage, but i don't think i can do all the lifting her up & down that it involves. but i just miss snuggling with my amelia. HOWEVER, today adeline & i had a slumber party for nap time in the playroom on the floor mattress. it was a lot of fun as addy has nearly 12 stuffed animals to line up in a certain order that only she knows. she fell asleep with her wee little hand in mine.

so what's going on, blog world? i'm here all day, checking away to see what others are writing. maybe i'm the only one with time on my hands! i have these paragraphs all out of order tonight, sorry readers. figure it out *smile*

AND MY BABY IS TURNING 1 SOON. omg.

thankful & maybe a wee bit sad

this is just going to be a very honest post. are you bracing yourself? *wink*

so i'm just not sure how to react or explain or *whatever* about this whole brain tumor/brain surgery situation. part of me wants to downplay it, you know--oh it's not that big of a deal, it's the best type of brain tumor to get, i'm doing fine, etc, etc. or do i let it all go & say that yes, the side effects of the surgery are very irritating & make me self-conscious (more than i was as a teenager!) & i feel like frankenstein when out in public, & i still cry a bit when i think about the surgery, etc etc. i for sure am not into getting 'pity'...so i'm trying to avoid people feeling sorry for me, but i want to be honest enough to say 'no this wasn't the easiest experience ever'.

yet, i am amazingly *thankful* for the team of doctors that helped me through this. AND for the SHOCKING amount of prayer support & cards & meals & email & facebook encouragements. it brings me to my knees when i actually *sit* down & think about the scope of people who are praying for my recovery & prayed over the surgeons & the operation in general. i can now attest that god is working now & i want to continually throw myself down & thank HIM for how well the surgery went, for the team of surgeons & nurses, & for my (so far!) steadfast healing.

my last few days in the hospital i was in the 'burn recovery unit' & while i was up, wearing my own pj's & walking around holding desperately onto wes' arm for stability, i saw so much pain in other rooms... it's hard not to downplay this surgery & recovery, b/c, well i AM recovering amazingly fast. when i think '11 days ago i had brain surgery'...that thought sounds almost silly. as if i should be lying in a bed drooling with some ginormous head turban on babbling about something that makes no sense. but instead, this morning i went to a farmer's market, yesterday i walked the 1/3 mile & back to the neighborhood park (resting throughout) & am nearly off my heavy-duty painkiller meds. it seems a bit ridiculous to complain a bit about half my face being numb, about the loud ringing in my ear, how i sorta look like a toddler when i walk, the head rushes when i go from sitting to standing, THE FACT THAT I CAN'T PICK UP OR HOLD AMELIA OR ADELINE FOR 2 MORE WEEKS (that last one is the saddest one of all...i mean, i won't be able to hold my baby millie during her birthday party! *SNIFF SNIFF*).

i guess what i'm getting to is what is that balance between being to-the-moon-thankful to be alive & thankful that i live in a time when this surgery is done with such minor side effects (100 & even 80 years ago, i most likely would've died during the operation) & yet also allowing myself to grieve & be sad for the side effects & restrictions? it's very helpful to have my parents around b/c they have been through several knee replacements surgeries (my dad) & then also my dad's diverticulitis/osis & partial colon-removal surgery & then my mom's ongoing problem with her thyroid...they just seem to have a lot of wisdom about all the ups & downs with pre & post-op.

i'm just hoping, praying, wishing that by this time next week i will be recovering at the same clip that i am right now. maybe i be able to move my head from side to side without telling my muscles to do it. maybe i will be able to walk without worry that i'm going to lean to the right & nearly fall over or trip over a stupid little twig or crack in the sidewalk. just like when i was pregnant, i feel that i am even more thankful when my body is healthy & thriving.

and folks, tomorrow i have the green light to wash my hair & take a SHOWER! (my incision line is too far down on my neck to cover it with the gauze & plastic wrap, so i was just told to do washcloth baths...which *SUCK* in case you are wondering). soooo, tomorrow in the a.m. i will be gleefully washing my hair (gingerly around the incision & buzzed hair part, yes) & this week i am getting a hair cut/style so my hair doesn't look totally lopsided b/c one side has about 3 more inches on the other incision side that was buzzed. i dunno what i'm going to do, what style to pick. can't be a pixie b/c my buzzed section still looks a bit like a thick beard & the incision REALLY is visible (damn blond hair)...any suggestions?

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in other news, the girls are doing great. adeline is now a dancing, prancing, fiend & runs around our house shouting things like 'MA-MA!' or some other sort of exciting thing she's thinking about. she is now deciding to usually put underwear on instead of going around the house naked from the waist down (see, we are improving on nearly every front). she asked me the other day to show her how to write an M. i tried, but didn't succeed like gma sue was able to. & adeline is all over me with hugs & love pats & 'oohhhhs' when she spies my incision (we explained to her about me going to the hospital for my ear & that i now have an owwwiiiee, so she knows i am not my old self at this point). she's really into holding my hand & that is so sweet, let me tell ya.

amelia is ... well, just watch an episode of curious george & that's pretty much her. she's curious about everything & even though she's teething, she is still pretty happy-go-lucky & smiling. i am soo sad that i can't hold her (she's in a hold & walk with me stage with teething right now). i miss snuggling with her more than i care to admit right now. she's a climbing fool & loves to speed crawl to show off every time the stair gate is opened...currently, she can get to an open stair gate faster than i can, sad to report, lol.

wes had a *tough* week at work. his office is moving from the polaris area to delaware, ohio (oh, 25 minutes away) & him & 4 other guys were the movers. needless to say, he's very sore right now. plus, the entire new company (they used to be employed by weyerhauser & now the new company is called 'redbuilt') anyway, all the workers got a 10% pay cut to keep the new company afloat. which sucks b/c he also just got promoted to some title of head/lead/manager for engineering. it's not like we're all tangled up & in love with money, buuuttt, we are a 1 income family already on a tight budget. *smile*, now an even tighter budget, lol. we'll make it, though! you've never met a mind like wes' when it comes to saving money & making things out of nothing. he's the only person i know who somehow gets a promotion while the company is downsizing. that sort of thing. i can't wait for our first date out when i'm feeling up to it.

lunch is ready, time to eat (& yes, i'm very thankful i don't have to make it...gotta love my parents).

my girls are HOME

so yesterday was a good day. exhausting, but in a nice way. i went out of the house for the first time! you know, as in 'let's take you to a place where no one else knows you just had brain surgery'. so....off to costco we went! (my mom & i). the car ride was not good; i'm still getting VERY dizzy when i'm outside & especially when things around me are moving quickly. so driving 45 mph = head spinning for me. so while my mom drove, i had my eyes closed most of the time (but i did see the red light she went through, *wink wink*). then we got to costco & my mom sort of just said that she would drop me off & i was like 'naaahhhh, i can walk it' & then she pointed out that from the car to the store was the about as far a distance that i've walked so far & i was like 'hhmm, right-ee-o what to do now?' so i sat in the costco cafe after the tiresome walk into the store & to the cafe area. wes joined me to eat his lunch there (i had eaten at home) & there i sat until check-out. on the way home, i was treated to a small mcdonald's french fry! yummy. (i haven't had any sort of fatty foods in about 10 days, soo it just tasted to good, lol).

pic of me before our outing. i look slightly zombit-ish in this pic for some reason. or maybe like frankenstein?! lol.

this is the board i made for adeline & amelia when on their 'vacation' to gma & gpa gerbicks. each day, there was a little note to be read to them & then a sticker. then there was the big shopping bag filled with wrapped little gifts & on the gift was a sticker than coordinated with the sticker on each day. (hhmm, i hope that makes sense). apparently it went over well!

wednesday afternoon, after my busy morning of stretches & a longer walk (you know, down to the corner, 4 houses down, lol...think geriatric walk), then costco...i laid down for a nap. 20 minutes into my sleep i was disturbed by a voice i hadn't heard in 9 days: addy screaming "MAMA MAMAMA MAMAMAMAMAMAM" & watched as she danced & pranced around & hurled herself into the bed & gave me one of the best hugs ever. by this time i was crying & exuberance is one word to describe that moment.

i have been trying to avoid thinking about how much i miss the girls & it all hit me at that moment & i just wanted to squish them & hold them & love on them all night.
AND holy crap, gma sue did SO MUCH with them & they had gobs of fun. BUT being the wonderful gma & teacher that she is, sue taught adeline how to write an A! can you believe it?! it's true. i'll have to take a picture to show the proof.

& just this afternoon, i went to see dr welling at his office & my staples were taken OUT.