The secret to a doctor’s appointment going well? Bathe it in prayer. A lot.

I was approved for the drug manufacturer’s patient assistance program. This means they will supply my meds (well, the ones they make) for the next year! Praise the Lord! We just picked up a 3mo supply of the Zithromax. God is good! He supplies our every need. =)

A seemingly simple 2-day project inevitably stretches into weeks at this house. The super secret surprise for the kids is proving to be MUCH more complicated than I’d originally figured it would be. =(

There are rumblings of a new Moms Night Out kind of thing happening at church. A monthly get-together of moms to do something girlie. I don’t even know what that is, but I’m game for learning! =) A night out sounds WUNDERBAR!

Matthew’s MedicAlert bracelet came in the mail today. He was so excited!

My B12 shot will not be administered tonight (yea! hehe!) because the solution has what looks like teensy tiny STICKS in it! YIKES! Will call pharmacy tomorrow to see what’s up.

It looks like not only is Mom a fellow Lymie, but at least one of her brothers could very well be also. He hasn’t seen a doc about it yet, so of course we can not say for sure, but he sure had a lot of symptoms off the checklist Mom read to him last night.

My two youngest brothers have an appointment in a couple of weeks to look into the Lyme and Co. problem.

Mike’s car is still not fixed, so Mom will be over this week to shuttle the kids back and forth to school on Thurs and Fri again. This is proving to be a bigger hassle for all of us than first anticipated. It’s just ROUGH having two different family make-ups or whatever. First just us, then Mom and the boys also, then us again, then them too again… repeat and repeat. The kids all get on each other’s nerves in about half a nanosecond, and my two get upset about the boys touching any of their things, etc. I’ll be SO glad when Mike gets his car runnin again!

Posted: September 15th, 2008 under Lyme disease, just life.
Comments: none

I had another doctor appointment. Went much better overall, I think. He said I looked better… less drawn and more animated. I guess this is a good thing. LOL Still not sleeping worth a flip, so he upped my dose on a couple of things.

The Flagyl hasn’t whooped me yet, but I’ve only been at full dose for 2 days now, so it’s still a bit early to tell, I think. On the whole, though things have been better/nicer in the last couple of weeks. WAY less nausea and being off balance. Less twitching. Less overall aching, too. I did have a couple of days of some extreme pain in my knees and upper legs, and some really, really bad headaches, though.

We’ve had some interesting highs and lows in our medicine costs lately. One of mine (Zithromax) and one of the kids’ (Zyrtec, replaced by Claritin).

The thing with the Zith is that it is super duper expensive even in the generic form. At least it is if you have to take it for the length of time I’m having to take it. These TBIs (tick-borne infections) are some really tough bugs to beat and take BIG doses of antibiotics. Whereas most people will take a short 5 day course of Zith, I am looking at probably a couple of months… two pills a day. That’s a lot. It’s like a WHOLE lot. I had some massive sticker shock when I went to pick up the script for the first time. The gal said it would be $400 for a month’s supply. I asked about the generic and she replied, “That is the generic cost, the brand-name is $600.” Oh my!!

My mom bought 14 pills for $100 from Wal-Mart. That was enough to find out if I would even be able to take them (i.e. NOT have an allergic reaction) and to get me tied over for a few days while we tried to figure something out about affording this stuff. A couple of days worth of poking around and we managed to find the generic at Costco for a lot less. We also found that the drug manufacturer sometimes will supply meds for low-income, prescription-drug-plan-LESS people like myself. Sooooo, we’ve applied for that and in the meantime we bought another 10 days worth for $34 from Costco.

Yeah. That much less! I think I know where Wal-Mart is making all its profits now. =/ It’s in the medicines. Both prescriptions and OTC. Here is another example…

Another really good deal I found at Costco was the generic form of Claritin. The kids have both taking Zyrtec for about 6 years. Before Zyrtec’s patent ran out and they released it as an OTC medicine, that meant a $20 co-pay per kid each month. Once the patent ran out, it was about $1.50 cheaper per kid to buy the generic form OTC. Soon after I discovered we could get Walgreen’s generic version for about half the cost, so we switched to that. A couple of months later I found a generic Claritin at Wal-Mart that would be even cheaper. $7.50 for a bottle of 60. That would get both kids covered for a full month… at $7.50! Much better than the $40 it had been, so they got switched to Claritin a month ago.And then in walked Costco and sweetened the deal. I just paid $11.99 for a bottle of…wait for it… 300 tablets!!!! That is FIVE months for BOTH kids!! For twelve dollars!! So the kids’ maintenance antihistamine cost per year has dropped from $480 to $30! Oh my stars!!! =)

Anyway, while we were at Costco, Mike decided we’d buy a membership and he would drive me out (it’s a good hour’s drive) a couple of times a month. We made our first shopping trip last week. I spent $189 and came home with not a lot. LOL

No, really we did get some pretty good deals. Specifically in meats and cheeses. We got 10 pounds of ground beef for $18, a couple of decent sized roasts for another $20, a 2lb brick of Mike’s sharp cheddar for $5, and 5lb of shredded cheese for $11. I also picked up giant cans of diced tomatoes, stewed tomatoes, and spaghetti sauce to try freezing them. (I’ll split them into meal-sized portions and bag them, first.)

Our other medicine news…

Matthew is taking a new medicine to try and help him control his feelings and thus his behavior. He’s only been on it for a few days and the doc said it’d take a few weeks to notice any real effects, so I’m trying to just be patient. LOL

The kids both competed in the Putt-Putt event through the ‘league’ or whatever the school is in. They said that their school split into groups and both my kiddos placed FIRST in their group! Too cool! Of course, they don’t have any idea how that compares to the other schools, so no clue yet on whether they did well enough for a ribbon, but they had tons of fun. That’s right. They BOTH went and had fun.

I’ll say it again… clearer… MATTHEW, the kid who was terrified to even go on the field trips if I went with him and would not go play with the kids or even go to Sunday School class without me… went on a school field trip while I stayed HOME. There were several other schools there and HE HAD FUN! =)

Here’s where I drop my jaw, squeal with delight, and do a happy dance!

And no, the new medicine is NOT an anti-anxiety med and in fact he didn’t even start it until the next day. Meds ARE responsible, though. It’s the antibiotics. No doubt. Antibiotics, of all things, enabled a kid who has lived in perpetual fear and who was downright terrified of being around strangers, especially large crowds of them, to spend all day at a new place packed with strangers and far away from Mom. Amazing!

Matthew and I aren’t the only ones with new meds. Meagan is now officially starting treatment for Lyme Disease, too. She is on the same antibiotics Matthew is taking. My doc said something at my appointment about babesiosis being infamous among the co-infections of Lyme for causing nausea. I’m going to mention that to her doc who when I see her next, because that is the symptom that bugs Meagan the most. Every day since the virus or whatever it was in January that had her vomiting every hour for several hours, she has felt like throwing up at least once. She feels like she is going to collapse a lot, too. I think she’s trying to describe being woozy or lightheaded. We’ll see what her doc thinks about the babesiosis. I know she tested negative through a standard lab, but it doesn’t show up in the bloodwork very often, apparently.

Anyhow, I wouldn’t be surprised if it’s babesia causing the nausea. After all, I did test positive for it and I have symptoms of it myself (nausea, severe headaches, air hunger, hot flashes and chills, sweats, and more). Personally I don’t see how I could have passed down only one of my infections to the kids. Seems much more likely that whatever I had/have got passed down to them both.

I’m going to be going in for a consult for Meagan’s behavior soon too, though for much, much different reasons than for Matt. This is more for the ADHD and CAPD (Central Auditory Processing Disorder) that I’ve suspected for years and years but had not been able to get the previous pediatrician to do anything about.

So lots of changes in the air… so far all for the better. We’re feeling better, we’re functioning better, and even better? The docs say it will continue to get better and better. =)

I didn’t get any of my projects done last week, but I might get a chance to work on the secret project for the kids this week. They got their room clean enough finally that I just might get to.

I can’t wait. They’re going to be sooooo tickled! =) I am absolutely planning on taking pics and blogging about it.

Posted: September 13th, 2008 under Lyme disease, Matthew, Meagan, kids, the changing me.
Comments: none

I know, I know. This blog would be so much better with pictures. Maybe with pictures it would advance past the boring-avoid-at-all-costs level. Sorry bout that. I truly DO have lots of wonderful ideas for posts… complete with pretty pictures to look at… the problem comes in the execution of said ideas. In part because of the vast array of health oddities that have befallen me in the last year and a half. Basically I have no energy or clarity to even think most of the time, and only just enough to THINK about doing stuff the rest of the time… not enough to actually do.

I really hope this will change soon, and so… (as I always seem to do)… and daydream about what I’ll do when I feel up to it. My list of “want-to-dos” is HUGE. Think Santa’s Nice list from the movie The Santa Clause. Totally that long.

Since I’m not there yet, I guess I’ll continue the old, boring ‘format’ for now. At least today I have a sorta kinda funny (or two) that relates.

The first one-

I saw my doc again Wednesday. He wasn’t as frustrated with me this time. I think mostly cuz Mom once again went with and this time she piped up and said a whole lot. Stuff about symptoms I’d had in the last few weeks and stuff about how paranoia is the name of the game for me. How I’m scared to tell him anything for fear he’ll quit believing me or seeing me. (Actually the comment I’d made was closer to “He’s about 3mo past due for no longer believing me”… I started seeing him in June, you do the math.)

Anyhow. I’ve been having a real rough couple of weeks and so he decided to change my meds all up. I’m now on Zithromax (more about that later) and Flagyl, and 2, count them TWO anti-depressants. Oy vey! While Mom was writing down the instructions on how much and when and when to increase and so forth (cause I could never remember otherwise), doc had me stand up to do the whole stand-with-your-eyes-closed test. “Did you just tip?” he asked as I stood up out of the chair. Ummm, that would be a yes. (I’ve been WAY off-balance the last couple of weeks.)

I barely got my eyes closed when he decided that was enough… on to the grab-my-fingers-as-hard-as-you-can test. Flunked that one again, of course. “Still weak” he said. He doesn’t know it but I would have flunked that test 15 years ago! lol I commented that after last month’s visit my mom discovered (and declared) that my son had the same strength I did. (The more amazing thing is my daughter has way more! but I didn’t think of that at the time.) The funny is my doc’s response to that. He said “I bet your son likes that. He can arm wrestle Mom.”

Ok. Maybe you just had to be there, but I thought it was pretty funny. My doc also told me I was a real piece of work at this visit. I’m not sure how to take that. =/

The second funny I have for you deals with a new Olympic sport. Last night I stretched a little sitting here at the computer and when I was through I had a couple of muscles start twitching. Now the twitching is nothing new. I have dozens and dozens of muscle twitches all over all day long. I’ve even had my tongue twitch! This was a new thing, though. Synchronized muscle twitching. I had a twitch in each buttock in matching areas! Never had synchronized twitches before. It should totally be an Olympian event, I could so TOTALLY compete! LOL

On the ‘plan’ for this coming week??

Well, if I can manage to grab enough ‘feel ok’ time, I want to get started on Matthew’s western shirt. He was so excited to learn Mom could make western shirts with real honest-to-goodness pearl snaps! He picked out the fabric he wanted and is just giddy with anticipation. Me? Not so much. I can’t help it! I love making the western shirts, I do, but see, the thing is I kinda have in mind that they will look like… oh I don’t know… a western shirt?!?! when they are done. Not like something you’d see Bozo wearing. The fabric he picked out is a little bold and a little Oriental. Not exactly your typical western shirt fare. Ah well.

Also I’d like to get a t-shirt appliqued for Meagan to wear with her favorite pair of (new) culottes. Bright, bold lime green with frogs. She wants a shirt with one of each of the different frogs on it.

After that I want to get the DVD racks wrapped in denim and hung.

Then there are the pillows out of bandanas to make. And the curtains for the kitchen, laundry room, and linen closet. And then there’s the 3 different quilts I have started that I need to be working on…

Of course, chances of me getting even the first one done this coming week are slim. Still. I can dream.

Posted: August 30th, 2008 under Lyme disease, blogging, funnies, just life, projects.
Comments: none

It’s done. The kids are BOTH in some other school than our own Bullfrogs and Butterflies Learning Center. I have to say I hate that. I know, I know. I should be happy for them, blahblah. And ok, I am… a little… or at least I’m TRYING to be. Truth is…

I want to homeschool! I love teaching them and am going to miss it something fierce. I already missed teaching my girl. Meagan didn’t and doesn’t miss it, of course, but I did. She doesn’t care a fig newton who teaches her or what her curriculum is like or what she learns or anything along those lines. All she cares about is whether or not she is surrounded by PEOPLE! She absolutely thrives on being surrounded by people. She has been (naturally) just beyond ecstatic for the new year to start. No more stuck with only one or two playmates!! WOOHOO! She made cupcakes for the whole school for lunch today. She “can’t wait!” to meet the new kids and to spend all day with her friends.

Matthew and I? Not so much. We pretty much shut down around people. Stammer, stutter, tense up horribly, and anxiety levels blast through the roof. The anxiety truly is just unbelievable. It’s worse than awful.

I hated that I’d passed on the “super shyness gene” to either of my kids, but I had expected it. It always flabbergasted me that Meagan was SO outgoing, SO fearless, SO comfortable around other people. It’s always been this way, this extreme social anxiety for Matthew and me and extreme social butterfly for Meagan…it’s just weird. It has gotten a teensy bit better for me now that I’m an adult, but not a whole lot, and there are still times when it is more than intense. For Matthew, though, it *seems* to be letting up some… with the outlook of STAYING that way.

I can not believe I just wrote that! I never thought I’d see the day. Honestly. His anxiety has always been much worse than mine, and that’s saying something, so I am truly shocked that I can write that. It’s true though.

The anxiety (we know now) stems from the borrelia, bartonella, and other bacterial infections. Matthew started antibiotic treatment right at one month ago. Two weeks ago he went to a 3hr/day daycamp at the library and loved it. He was fairly nervous and scared about it before going, but he went without hanging on to me (or Dad since he took him) and he ended up loving it. I suspected the antibiotics helped some, but it seemed so ‘out there’ and so I wasn’t really sure.

This, which was so much bigger since he knew that not only was it ALL DAY as opposed to 3hr, but was ALL YEAR as opposed to one week, and also full of tons of rules and lots of big kids and so forth and so on… well, he was a “little bit nervous” last night, but also “excited”. His words.

He walked in, deposited his bags and cowboy hat (he has to stay out of the sun because of the antibiotics he’s on), then went to his desk. I saw him standing there and he looked ok, and so I started to just walk out and go on home, but he hadn’t said anything to me yet. Something niggled not quite right, so I didn’t dare just leave him without checking on him, so I signaled him out of the classroom real quick and asked if he wanted a hug. Sure enough, he hid behind me and almost broke down.

But only almost! Not DID! “I’m scared” he said. I told him he’d be fine, reminded him of his bible verse about being courageous, and walked him back to his seat. The problem all of a sudden turned out to be simple seating arrangements. He apparently thought his sister would be sitting beside him and instead she is on the opposite side of the room.

Once I got him back to his spot, I turned around and walked out.

I expected he would hang on to me and cause a scene. I expected I’d have to pry him off me, crying. I expected to have to fight him to even get into the car so we could leave the house this morning, to tell the truth. There wasn’t ANY of that, though.

Two months ago there would have been.

Two months ago it would have been a HUGE ordeal. Fighting, kicking, screaming getting him to the car. He would’ve been hurling “I hate you”s, “I won’t go”s, and “I’ll just run off”s the whole way. At the school he would have sat in the van and refused to get out of the seat. I would’ve had to haul his stuff in, then come back out and physically pry him out of the seat and half drag/half carry him inside. I would’ve had to take him off to a corner or a side room or something to try and threaten him with spanking, as under-my-breath as I could, to get him to walk in there and sit down and then realize (very late to class by this point) that that is just NOT going to ever happen, and so half drag/half carry him in to his seat myself. He would’ve been clinging to me. Holding so tight and fast that depositing him on the chair was impossible. I’d would’ve discovered that quick enough when I pried his fingers off one at a time and tried to get them to STAY off.

Then I’d finally catch a break in the arm-clinging and manage to slip free of his grasp and start for the door. I might even have made it all the way to the door, but then he would’ve all of a sudden been in front of me, arms tucked in, hands clinging to me in front of him, trying to burrow his head into my stomach, and press his body into mine in an effort to hide from the dozen or more pair of eyes watching us.

And then the process would start all over again.

Probably I would’ve ended up sitting with him, alternately threatening (and then the actual spanking, of course), lecturing, consoling, encouraging (yes, I’ve tried each of these in massive amounts!) in the bathroom or the lunchroom or somewhere else hopefully out-of-earshot of the rest of the class who were TRYING to have school.

That is EXACTLY the way it would’ve happened two months ago. How can I be so sure of exactly? Easy… the scenario played itself out time and time again over the years. Sunday school class, vacation bible school (incl. this summer… only I was too sick to mess with trying to fight him so I just didn’t even bother trying this year, his anxiety was high enough just in anticipation that I was going to make him go, it was evident that actually trying it would be disastrous), various extracurricular daycamps and/or sports, various ‘playdates’ and family get-togethers, sometimes even with well-known situations like going on an outing with his dad.

It’s never been the ‘being away from mom’ that bothers him so much as it’s been the ‘being around large groups of people, especially if they’re unknown’. He’s never had a problem spending the whole day off playing in the neighborhood. Most days he wasn’t supposed to be doing his schoolwork, he was off playing. Not home. Away from me. NO problem.

The problems have always come in when there are groups of others involved. A small handful of well-known friends (three or four…maybe five at most) and he’s ok. More than that, or strangers, or WORSE… BOTH… and the crippling anxiety attacked.

You can imagine why I was more than a little concerned about the possibility of putting him in public school. *shudder*

Starting school, even in a private school with only about a dozen students, is was a situation perfectly engineered to set the anxiety monster loose.

There is NO doubt in my mind that without the antibiotics this would have been the case. It’s ALWAYS been the case. And now it looks like it’s not. =)

I’m not going to say he is ALL better, completely cured, though, cause that’s not true, either. It will take a long time for that, but absolutely the antibiotics are responsible for getting him to the point that he COULD go off to school today.

Antibiotics.

Just wanted that to sink in. NOT anti-anxiety meds (though those are not completely ruled out as an option… we’ll be discussing those and other meds at a consult with the doc the 8th). The kid needed simple antibiotics. All these years of literally disabling anxiety and all he needed was antibiotics. It blows the mind!

Excuse me while I go back to my no-more-homeschool-pity-party now. =(

Posted: August 26th, 2008 under Lyme disease, Matthew, kids.
Comments: none

Mike and Matt just walked out the door. My honey is going after the mint chocolate chip ice cream he forgot to pick up for me last night and Matt tagged along because he wants to wear his suit to church tonight.

Matt has a thing for suits and ties. He likes them. A lot. He hasn’t been able to wear them in quite awhile because his boots wore out and I couldn’t even find dress shoes to fit. He found a pair of (I think UGLY!) boots at a store in town that he likes, though, and now he has talked his Dad into taking him to pick them up. They were on clearance, so for his sake, I do hope they are still there.

I really hope they are. It’s all he’s talked about since Friday when he spotted them. He is so excited to wear them with his suit and tie tonight to church! Please, Lord, let them still be there in his size.

UPDATE: Yes! The boots were still there. Here is a pic of them and my yummilicious ice cream. Notice I had already started enjoying the ice cream when I thought to take a pic. The fabric in the background? My current sewing project… 6 new pairs of culottes for gymclass for Meagan. I got them mostly finished today. They just lack elastic and hemming.

Posted: August 20th, 2008 under Lyme disease, Matthew, just life.
Comments: none

You know it’s been too long since your last post when the WordPress log-in thingy does not automatically let you in, but instead pops up with your user name and password prefilled and a little unchecked box that says “Remember Me”. I totally think that was WordPress’ way of saying “hey! What’s up with the no-posting?! Hello?! Remember me… your blog?! You know, the one YOU wanted to start. Hello? Hello?! Remember me??”

Yeah, so it’s been awhile, and I can’t even say that it’s because I’ve been oh-so busy. Well, I guess I could, but then I would be lying through my teeth. No, the lack of posting is a combination of being a little busy, a little feel-like-death-warmed-over, and a little trying-to-avoid-all-forms-of-reality. (I find it’s easier that way… just don’t think about stuff. Unfortunately for me this does not always work. Actually it rarely does, but that doesn’t stop me from trying. I’m nothing if not persistent!!)

So, about this end of an era thing…

Yeah. It sucks more than a little, I’ll be honest. I don’t even like to think about it, and it has nothing to do with ‘letting go’ of the baby, either, so don’t go there. (That’s where most people seem to go when they realize I’m not exactly ‘ok’ with Matt going to the private school.) I am SOOOOOOOOO looking forward to the time away from my precious baby!!! Oh my lands you have no idea!! I know that sounds horrid, but really it’s BEEN horrid the last couple of years and I NEED a break from him, oh PLEASE! So yeah, it’s so not ‘letting go’ of the ‘baby’. Nope. It’s letting go of the homeschooling life/dream. That’s what is crushing me. I can’t stand it.

Every time I look at school supplies, teacher supplies, new workbooks, catalogs for teacher resource materials or homeschool curricula, or anything that might vaguely resemble a ‘teaching the minds of young children’ slant… I want to scream and kick and wail and gnash my teeth and cry and cry and cry. =(

Enough of that, though. I do have a few other things to mention. Like….

My house is clean again! (Well, ok, the bedrooms are in progress and the pantry…well, let’s just not talk about the pantry, shall we?) But on the whole, my house is clean again! I’d done ok with keeping it picked up and clean after the folks stuff got sorted out and we did the initial clearing out and cleaning up, until about March when the fatigue and aches just got to be too much for me. Since then stuff had been piling up and getting worse and worse and the kids’ pitching in was a no-go. Not that I didn’t try… it just didn’t work. *sigh*

My grandmother called early last week, though, and wanted to know if I’d be home Fri around noon, and if so could my mom and her bunch come over, as she and PawPaw would be coming through town around then and they’d like to stop in. Sure! I told her. And then Mom called me and said “Do you need some help cleaning?” and I said back to her “AHAHAHAHAHAHAHA!!! You are so funny to ask that! That was a stupid question! You saw my house two days ago… you tell me!” haha

So come over she did, and help me clean she did, and visit we did on Friday. Granted, it cost me. Friday night I was in so much pain! UGG! I popped 2 pain pills then went and writhed in bed for about 4hr while the very worst of it passed. Saturday I slept all day. No really. All day. Sunday was church and by that point I’d mostly recovered. I did nap Sun. afternoon, and my head was killing me Sunday night (TWO rounds of 2 pain pills and I still couldn’t sleep Sun. night.).

Yesterday we did some more prep for Operation Start-to-School. We took Matt to the uniform store and sized and purchased him 2 pairs of pants, 2 short sleeve shirts, and 2 long sleeve shirts. He actually could use more than that obviously, but we are el cheapo private school folk. We can’t even afford this, let alone a complete weeks’ worth (which would have been another 3 pairs of pants, and another s/s and another l/s, since they only wear the blue uniform-store shirts 3 days a week and plain white WalMart button-ups the other days). Meagan has the same line-up… 2 jumpers, 2 s/s and 2 l/s. It’s not an ideal set-up since the jumpers and pants either have to be worn twice or be washed mid-week, but it’s what we can do.

From the uniform store, we went to a nearby boot store (HUGE place) to see about finding a pair of cowboy boots for Matt to wear to church. He LOVES wearing suits and ties to church, but has not in several months because he has no appropriate footwear. I’ve looked everywhere and haven’t found a thing in his size. Granted everywhere is pretty much our local WalMart and one time a Payless when we were out of town, but still… He really prefers boots to dress shoes, but I haven’t even found dress shoes to fit, so he’s been wearing jeans, t-shirts, and tennis to church. Oh the horror, I know. He doesn’t like it anymore than me, actually I think he probably is MORE bothered than I am by it, but oh well.

Anyway, this huge boot store was supposed to have massive amounts of boots to pick from…and they do… if you are a full-grown adult with a FULL-grown wallet. Oh my stars!! They had about 4 styles in his size and he liked none of them. Also? They all were too narrow for his feet. Thankfully there was a pair at a local high-falutin’ drugstore-cowboy kind of joint on clearance that he liked AND that fit decent. They are not the black I was looking for, though. Instead they are a chocolate brown lower, with a mustard gold top. Personally I think they look like sick baby poop. Blech! Matt loves them, though, and has been buggin me all day to go get them for him.

Unfortunately I could not do that because he picked today to throw another all out tizzy massive meltdown of epic proportions. Screaming and hitting and biting and growling ensued. I ended up having to sit with him on my lap, one leg wrapped on top of his lap and one hand on each arm trying to keep them still in order for him to be able to get calmed down. Mike called the dr, because even though I have a consult set up for the 8th, I don’t know at what point we QUIT the waiting and just take him in to be admitted. Seriously he gets that bad with these rages or whatever they are. True, this is the first in a couple of months (I totally think the lackadaisacal no-pressure/stress summer is to thank for the brief reprieve…), but we all got lucky in that today I was not hurting super bad or super weak or whatever. Most days I would not have been able to physically restrain the kid because on most days he is far stronger than me. If that had been the case today, Mike would have been wholloped on the head with a metal pipe and I would’ve been bit up pretty good.

So the official word from the dr was… can’t do anything till the consult. FINE, but could you answer the whole question of what to do in the meantime?! I mean we totally got lucky today that I could hold him still, most days I can’t! What do we do when he goes all berserk like this and I can’t help Mike… or worse… Mike is at work. I sorta-kinda got the answer to that in a roundabout way… dr told Mike that if we think he is going to harm someone, take him to the childrens hospital an hour away.

Ok, so at least we have a plan… sorta. I mean by the time we got to the hospital I know he’d be calmed down, these tirades don’t typically last for hours once he’s restrained (which he would be in a car seat…), but then there’s the question of HOW in the beegeebees do we get him in the car and strapped down when he’s like this? We’re doing good if we can keep him in the house and semi-confined to one room. If we have to try to move him, he’s liable to take off into the street without looking (he’s done it before) or maybe climb the roof (again, done it before), if we lose our grasp of him which is not that difficult to do considering all the writhing and kicking and pulling and squirming the kid does.

And what if he pulls this kind of thing at school?

Sad thing is, just before this tirade, I totally thought I saw improvement in the whole moodiness thing. First there was the library daycamp thing a couple of weeks ago, of course. That was a huge sign of progress. Then this morning he had been out playing and when he came in and told me who he’d been with, I told him he needed to stay inside now since #1 he wasn’t supposed to be playing with this kid and #2 he wasn’t supposed to be in the sun. Ordinarily this would have provoked a massive meltdown. Yelling and screaming at me that he hates me, he hates his life, it’s not fair, he can play with whoever he wants, yadda yadda. Instead, this morning he took the disappointment very well and calmly said ok, and then asked if he could go to another friend’s house and go in and play video games instead. (Ok playmate, and out of sun) I agreed and off he went, no fuss, no fighting at all. I was shocked! I thought between the daycamp thing and this… surely the antibiotics were hitting the target and helping with the moods/behavior/pysch.

And then the meltdown. *sigh*

I guess it’s still possible the meds ARE working. After all, this was his first major meltdown in a couple of months, and it is about one month into treatment, so probably due for some herxing/cycling about now, too.

On another note (kid)… Meagan got back up out of bed around 11pm tonight and came looking for the thermometer. I asked her if she felt like she had a fever, and she said she did. Thermometer read 97.3. This is becoming quite the familiar scene around here… Feeling feverish? Your temp must be low! Matt did this a couple of days ago and his temp was 96.1!! Mine comes up anywhere from 96.4 to 97.6 when I feel feverish. Thing is we’ll really feel feverish on the outside too. Like Mike will put his hand or lips to my head and tell me yup, I probably have fever, but then we check it and it’s so low! Weird!

Posted: August 19th, 2008 under Lyme disease, Matthew, blogging, family, just life, kids.
Comments: none

This post is going to have a little bit of everything, and a lot of nothing. haha I just wanted to throw out a few different things and instead of a bunch of little posts, I’ll do it all in one.

I got Meagan’s denim cowgirl swirly skirt finished finally. Somehow she managed to pooch her tummy out enough while I was trying the elastic on for fit (twice!) that the skirt now falls down to the top of her hips because the waist is so loose. It’s a pretty long skirt to begin with (it’ll be great for winter with a pair of tights underneath… nice and warm), so it looks like she should be able to wear it for a couple or three years.

This past week brought us a first. It’s one of those “developmental milestones”. One of those “growing up moments”. The kind people make scrapbook pages about, although admittedly it is one that typically happens as a toddler, and I don’t HAVE any toddlers…

Last weekend Meagan got a call from a friend of hers, inviting her to go to a daycamp the local library was having. It was going to be from 9-3pm, M-F, so bring a sack lunch, we were told. Mike decided that since it was quite possible Matthew would be GOING to school this year (man do I hate giving up the homeschooling!), it would be a good thing for Matt to go to the daycamp as a way to get used to being off ‘by himself’. So when Mike took Meagan to sign up, he signed Matthew up too.

Well, of course the rest of the weekend he was more than a little anxious, and definitely not pleased with the situation. We went ‘lunch-sack shopping’ Sunday afternoon to get goodies for lunches, and he did enjoy planning what he would pack/take.

Monday morning was liable to be disastrous, though. I told Mike ahead of time that I should stay home and he should take the kids and drop them off, because I figured that would lessen the chance of a knock-down, kickin-screamin, pry-him-off-a-parent fight. So I stayed home and waited for the report of horrible crying and fighting…

It didn’t come!!!

Mike said that Matthew went in and sat down next to his sister (all weekend he had been on her case making sure she knew she had to sit with him and not leave him alone at ANY time…) at a table to one side of the door, while the teacher was at a table on the other side.

No kicking!

No screaming!

No clinging!

No tears!

We got a phone call at noon from Meagan to say “whoops! It’s only till noon, can you come pick us up?” When I got there I found BOTH kids happy and excited and trying to tell me all about their day and what they were going to be doing for the week. The kids had all been put into groups, and while mine were both together (whew!), there was one other kid with them… a girl, even… and Matt was ok with it! He was not only resolved to having to go back the next day, he was EAGER!

Told you it was scrapbook worthy! The kid’s 9.5y and he just went to his first no-mom (or dad or grandma or uncle, etc) activity/event! AND he did it without any histrionics! And it wasn’t even just a quick 30min thing, either. He went in thinking he wouldn’t get to go home for 6hr!

I know he hasn’t been on his antibiotics long, but I can’t help but wonder/think that they had to have played a part. I tried to get him to go to VBS just a month or so ago and the anxiety/fear that caused was WAY more than what he had with the daycamp. In fact, it was such that he didn’t go… at all. He was hysterical just thinking I was going to make him go, there was no way I could have gotten him deposited in his class without a massive meltdown (that would, of course, have been very distracting to everyone else not to mention embarrassing for Matt and me).

Another clue that the meds might be helping some of his mood/anxiety/psych/whatever stuff came last night. He had been playing a video game online and was getting really frustrated. He’d done the same thing the day before and it quickly devolved into a massive frustration meltdown of yelling, hitting, slamming, stewing, etc and I had to ban him from the video games the rest of the day. He did get off the computer, but the meltdown effects carried on the rest of the day and into the night. It didn’t get better until he fell asleep. Anyway. Last night he was getting frustrated and so I told him, “You need to chill out. You’re getting all worked up again, and then I’ll have to pull you off again…”

He replied, “I know. That game was too frustrating. That’s why I’m going to a different site.”

I’m pretty sure my jaw dropped just a little. He not only recognized the frustration, but came up with -and instituted- a solution on his own before I’d said anything to him! He was already loading up a different game when I came through with my warning. Never. NEVER before has that happened. Not once, despite the 5 billion times the exact same situation, with the exact same outcome, occurred.

On another topic… I think I may end up taking Meagan to a GI before too long. She had a tummy virus back in Jan that had he puking every hour for several hours. It only lasted a day or so, but ever since she’s complained of feeling like she is going to puke a LOT. Like every day. She says it is mostly when she eats. She also says her tummy feels full a lot, and then she says she is hungry when she lays down. (????) Last night we each made our own pizza for dinner and they were all cooked one, then the next in the oven. Meagan’s was cooked first. She let it cool while Matt’s cooked, then started eating when I put Mike’s in the oven. She complained about the pepperoni making her feel like throwing up, so I told her not to eat them, then.

My pizza was last in the oven (since I’m the cook… you know how it is…) I had to keep reminding both kids to EAT!! and get ready for bed. Matthew was playing a video game (NOT the frustrating one…haha), and Meagan was just avoiding eating. I let my pizza cool for about 5min, and then settled in with my food and my handful of pills to watch Everybody Loves Raymond. Meagan had still only eaten about half of a piece of pizza… 30min after starting. I told her again to hurry up and eat (and then told Matt again to get off the computer and do the same). Meagan told me, then, “I am! I have to eat it slow or it hurts my stomach.”

Umm… ok? She ate slow, all right. Another HOUR and she had about another half piece eaten. (She basically left the very bottom of the crust of both pieces.) I sent her to bed at that point. She put the other 2 pieces of her pizza in the fridge (I think). I don’t know what is going on in her gut, but this is getting ridiculus!

With Meagan’s skirt done, the next project(s) I have coming up is a stack of culottes for her for P.E. (provided she gets to go to the church school again this year), and get this… a western shirt for Matthew for his un-birthday! It won’t be the first western shirt I’ve made, but it’ll certainly be the teeniest. I made a couple for my stepdad when I first started sewing back in high school. He barely ever wore them because they were “too special”. I’ve warned him a million times since then that since I made them to be WORN, if he didn’t wear them, he wasn’t getting anymore. haha It’s been 15 years and he has not gotten another yet. I wonder if he’s figured out I really meant it yet or not. haha

This is also going to be the wildest western shirt I’ve made. The two I made in high school were not sedate, but this one! Oy vey!! Matthew picked a black fabric with BRIGHT blue flame pattern, and then for the yoke he picked a black fabric with BRIGHT red flames…and gold Chinese dragons! He wants me to put one dragon on each yoke! What a combination for a cowboy shirt, huh? HAHA The pattern calls for something like 1/4 of a yard for the yoke… I bought 1 full yard since he wants a dragon centered on each side. I’m going to have to do some creative pattern placement, I think. haha

Little man was so shocked to learn that Mom could make cowboy shirts and even put those fancy-shmancy pearl snaps on them! HAHA So cute! I went ahead and bought myself the pliers for putting them on, too. I just used a hammer to put the snaps on before, but if I know my son, this will definitely not be the last cowboy shirt I make, so I figured why not? Do it right this time. haha

Posted: August 9th, 2008 under Lyme disease, Matthew, Meagan, family, just life, kids, projects.
Comments: none

Had another doctor appointment yesterday. It did not go so well. I don’t think my doc likes me much. I apparently was a big pain and no help at all. Problems with being decisive on whether symptoms were better or worse, etc (to him the problem was lack of decisiveness, for me the problem was: I couldn’t TELL if there was any better/worse). Of course, if he really KNEW me (not that I expect him, to, but you know what I mean…) that alone would have been a big clue that NO, I’m not any better.

The last few months some of the most crippling symptoms I’ve had in terms of getting anything done or functioning on a basic level have been:

• the inability to communicate verbally (it’s like the pathways from brain to mouth are tangled or closed completely in some cases)
• the inability to prioritize (for ex. what is the first thing I need to do?, what is the biggest problem I have? , what needs to be taken care of next? etc)
• the inability to make decisions (and this kinda goes with the prioritizing in a way…) about anything no matter how big or small… and NO this did not use to be a problem for me

Hey lookee!! I just ‘got around’ the not being able to prioritize thing a little, by making this little post. How cool is that? I wish I could do that more often. =( Anyway. These symptoms (especially the communicating one!) are far and away worse when it involves my mouth/speech, ‘on the spot’ or ‘quick’ situations, or when dealing with other people (whether family, friends, professionals, etc.).

In PRINT form I do a little better. That is, if I can sit down just me and the keyboard, I can generally spit out (via my fingers) what I am trying to say…eventually… it just will NOT come out through my mouth, and definitely not in an “on the spot” kind of situation…like a normal conversation. It takes lots of slow, deliberate concentration and lots of had work to get it spit out of my mouth. That doesn’t really work when you are in the middle of a conversation of any sort. =(

The bad news is… typing is fine, but not very practical in a minute-by-minute kind of way. Especially if you factor in the joint and/or muscle and/or bone pain I have (because even though typing might make the communicating a little easier, the fingers/hands aren’t always able to cooperate immediately). The numbness and tingling I get in my hands/arms off and on also makes it more difficult. And then, of course, there is always the problem of the keyboard not always being available to use.

I don’t know about you, but I don’t make a habit of carrying a laptop (that I don’t even have!) with me to church in case someone wants to ask me a question… or to the dr appt so I can better discuss symptoms and medication issues (although possibly I SHOULD in this case????)… or to the… ok, so I can’t come up with another example right now. That’s because any more these are really the only places I go. No stores, no library trips, no restaurants (unless Mike is there to take care of the speaking for me), no anything. Doctor appointments and church. That’s it right now.

The unpredictableness (is that a word? it should be!) is way it is for everything, actually. ALL my symptoms are come and go, off and on, random, sporadic, intermittent, no rhyme or reason, or however else you want to say it. Simply put, at any moment of any given day I can have any combination of a HUGE list of symptoms… and then 5min later the combo might be completely different.

Yes, there are some things that if they are a problem on a particular day tend to stick around most of that day, but even those are not generally every.single.second.of.the.day. The brain not working/thinking right is a real good example of that. On days when this is a problem (most days), most things involving thinking are pretty much no-gos for me all day… BUT since it is generally not an every.single.second kind of thing, there might be a time or two during the day when the brain works well enough that I actual have a 5min ‘normal’ conversation… or I can actually get all the way through a certain task with relative ease (like figuring out how to make a phone call and make a doctor appt for one of the kids).

One of the more frustrating aspects is that even these momentary clear-thinking spells are unpredictable. Not only in terms of WHEN they will happen (so impossible to plan tasks to coincide with them), but also in terms of how long they will last. Some days I’ll have several minute-or-two long spells of feeling clear-headed, and other days I’ll have maybe one or two times but each one is 30min-or-more long.

In case you haven’t figured it out yet… *grin*… the posts on this blog happen during those spells of clear-thinking that have lasted long enough for me to go “oh! I’ll go get a post written up real quick”. Sometimes, the clear-thinking lasts long enough to finish a post, and other times I can feel the brain shutting down and so I have to break it off and go back to mindless roaming through the house…

…like now.

In the middle of that last paragraph, I could feel the clarity go bye-bye. All of a sudden stringing the sentences together was much more difficult. I started making multiple spelling mistakes (at least the computer helps me catch and correct them…), and I started having problems remembering what I was going to type next. It’s probably taken me as long to type these last two paragraphs as it did to write the whole rest of this post. Pots. That’s what I typed first on that last word. That’s funny… though I don’t know why…

Over and out for now… try to pop back in during the next clear spot.

***update a couple hours later***

Immediately after posting this I got a note from a gal who has dealt with speech issues before and offered me this tip: carry pen and paper with me so I can resort to writing things out in a pinch.

DUH! Why didn’t I think of that before?? Easy. Another big brain issue I’ve had is in missing the ‘connections’. You know… putting 2 and 2 together to make 4, kind of thing. Like the other day when it finally occurred to me that Matt could not be in the sun…just like me… because he was taking the same antibiotic I am. He’d been taking it for a week before I snapped on that. Never mind that the whole week I KNEW he and I were taking the same med, I KNEW that it was the med that I had to take with a lot of water and no dairy and also eat with or else get sick and so I KNEW that applied to Matt too and I KNEW it was the med that makes it where I burn real easy and yet I did not make *that* connection for a week.

Why didn’t I mention the inability to make connections in my little list above? Because of another big brain symptom/issue… memory problems. I forget EVERYTHING, and really quick, too. This includes what my symptoms are or have been in the last few hours, let alone the last few days, weeks, months, etc. (Of course keeping other people’s symptoms -like the kids- straight is even more difficult.) I won’t necessarily forget everything, but I certainly don’t remember it all, either. Some of what I can remember gets twisted and put into wrong places on the timeline, too.

So, yeah. That’s my non-functioning brain in a nutshell. And here I just thought I WAS nuts…

****updated about 10min later****

Oh yeah… here is another brain issue… confusion. On all levels, about whatever you can imagine. I guess reading comprehension and auditory processing difficulties would also fall under the ‘brain’ heading, too, huh?

Posted: July 31st, 2008 under Lyme disease, just life.
Comments: none

Things have been so busy (and so tiring) the last 3 weeks (or has it been 4?… 5?) that there hasn’t been much getting blogged. It’s not so much that I don’t think about the blog, or posting about this or that… it’s just I’ve been doing a lot of “I’ll post tomorrow” and “I’ll finish x, y, and z and then post” kind of thinking about the blog.

I didn’t really anticipate using this blog as a means to update anyone on things going on around here in any kind of family newsletter kind of way, but it seems that the last few posts have ended up that way. I’m going to sink real low and pull a “it’s because my brain has been too sick to think/do anything else” with the posts problem.

Since the posts have taken the newsletter-y turn to an extent, I suppose I should continue that to an extent, just in case there actually is a lone reader out there somewhere following along. I’d hate to leave them hanging going “ohmigosh! She has Lyme and got some meds and thinks the kids have it…WHAT HAPPENS NEXT?!?! Did she ever find out about the kids? Did she ever get better? What about the whole freakin’ out about going to a dr thing? Or the telling her family and folks about what was going on?”

Of course, I don’t really expect that anyone is following along. And certainly if they are, they are doubtless NOT concerned to the extent of sitting on the edge of their seat with bated breath to know what happens next…

BUT I’m living in a reality of my own choosing at the moment and so I’m going to go with the whole exciting melodramatic scenario and make-believe that there really is a valid reason for me to continue to ‘update’ in the dreaded newsletter-y fashion.

Thus…the long awaited (humor me and edge forward on the seat, would you?) update of the last few weeks…

*drumroll*

I’ve had 2 appointments with my Lyme doctor so far. One week apart. I go back in next week for the 1 month check-in. It will be interesting on so many levels.

I never did list a complete rundown of all my symptoms/problems because that would be TOO boring and complainy but suffice it to say there are/were a lot. Before going in for that initial appointment I kinda figured I had at least one of the infamous co-infections of Lyme (Lyme in this case referring specifically to the infection of the borrelia burgdoferi bacteria as opposed to a more generic all-encompassing name for the condition of multiple infections of which the Bb is only one). I highly suspected…to the point of pretty much took it for granted… that I also was infected with bartonella (one strain is responsible for an illness commonly referred to as “cat-scratch fever”). At the initial Lyme appointment, my doctor decided to test for some co-infections, but in an effort to save me (the uninsured and BROKE) some money opted to NOT test for bartonella since my symptomology (is that actually a word? it should be…) was so strong for it. He decided that if I was ok with treating based on symptoms (i.e. based on a clinical diagnosis) then, in a sense, the testing for bartonella was unnecessary. I don’t think, though, that he actually wrote bartonella down as a guaranteed. Semantics, I guess.

Anyway, I digress. I had blood pulled and sent off to be tested for only 2 different co-infections. There are many, MANY more possible (even outside of the bartonella), but for now anyway, we were only testing for 2. Erlichia (or HME- Human Monocytic Erlichia) and Babesia (specifically just the babesia microti strain… there are many strains but the test only looks for the one…). I also had a CBC done to check my kidneys and liver.

Now… it doesn’t seem like there is a point, but there actually is…

I’ve had 2 appointments, but I’ve spoken with my dr on the telephone (yes the DOCTOR how awesome is that?!?) twice since my last appointment.

Lemme back up (only the teensiest amount) to catch-up on what happened between the blood draw and the first phone call…

Aches, new meds, tired-so-tired, brain-fry, July 4th at Bro3’s (shout-out to my wonderful snow-buddy… LOVED the whole thing… you did great at hosting, gal!) complete with exaggerated startle reflex (by-the-by… exaggerated startle reflex + fireworks = heart-that-feels-like-it-just-may-EXPLODE), more aches, more new meds, more tired. Absolutely no grocery shopping, very VERY little cooking/cleaning/laundry/etc, and only a teensy bit of crocheting and a little MythBusters (thanks Netflix!) thrown in.

Ok, that covers the 2wks between the appt and the phone call that shook things up a bit, sotospeak…

The phone actually woke me up that day and it was my doc. Wow, I thought… the DR called with the test results. A positive and another positive. Hmmm… The Erlichiosis was already being treated with the doxycycline I’d been given, but the babesiosis? Not so much. Babesia is a malaria-like parasite. In the same sense that borrelia is a ‘cousin’ to syphilis, so babesia is a ‘cousin’ to malaria. Its presence means the probability of needing to add a whole different class of meds to my cocktail at some point…anti-malarials.

Remember I said I never threw out a whole list of symptoms, but that it would be long if I did? Well now it’s beginning to make sense as to WHY… I now have 3 different ‘for-definite-because-the-test-even-came-up-positive’ infections and 1 ’symptoms-are-such-that-its-presence-is-so-obvious-we-don’t-really-NEED-to-test-right-now’ infection on top of that. That makes 3 big-bad bacterial infections and 1 malaria-like infection. Sheesh! No wonder that list would be so long and varied, huh?

Anyway, doc said at the next appointment we’d look at my symptoms again (re-assess, kinda, to see how the antibiotics, etc are working out) and if they’re not all being addressed we may add the anti-malarial. My initial thinking the first few days after that phone call was that even with the positive for babesia, the anti-malarial meds were probably still months away since it wasn’t currently responsible for any of my symptoms. This, however, was before I did much looking at babesia symptoms. The only ones I was really thinking of were night sweats and air hunger (feeling like you can’t get enough air)…neither of which I have or have had any time recently.

Then I did a little more looking into the babesia symptoms and discovered that some of my new-ish symptoms the last couple of weeks or so (lightheadness/dizzy, loss of appetite, nausea, base-of-head headaches…) could very well be the babesia rearing its ugly head. So the next appt. should be interesting on that note…

I said I talked to my dr twice. That was the first phone call. The second needs some other updating first…

I think I had mentioned that I had gotten the new pediatrician to sign the orders to test Matt for the Lyme, but that Meagan’s first appt with the new ped wasn’t for another week or two, so she still needed to be tested. The week of Meagan’s appt, the kids both ended up sick with the chest congested, asthma stuff. In calling to get them a sick appointment (to possibly end up on a short course of steroids and antibiotics) I discovered the ped. was on vacation that week. We tried to get them in to Urgent Care and that was a disaster. We ended up just giving them neb treatments at home and they’re doing much, much better now. Anyway! I cancelled Meagan’s check-up appt. that week because I thought she’d be seeing a dr at Urgent Care… and anyway I didn’t want the fill-in… I wanted the actual ped… because of the whole issue with the Lyme testing.

Well, the next week when I still hadn’t heard from the ped’s office on Matt’s test results by Wed, I called to check. I figured it’d been 3+ wks by that point, so I needed to do a little squeakin’ perhaps to get things movin’ again. They’d look into it and get back with me.

Turns out the results HAD come in the week before, but the fill-in doc didn’t know what to make of them or do with them or what-have-you, so they didn’t call. The ped. got them out and read them and lo and behold… he came up positive. I’m so shocked…NOT! haha

Doc didn’t really know what to do about it, though, and since she knew I was seeing a Lyme doc suggested I have him look at Matt’s results. Our kids’ insurance being what it is, though, that would N-E-V-E-R work as far as any kind of ‘official’ look-at-and-treat, so I suggested that perhaps the ped could call him for info and/or suggestions on what to do or where to go for info on what to do.

Today my dr called (yea HIM) again. Said he’d gotten a phone call and he’d passed on a little info along with directions on where to find more. He said the ped was going to send Matt to a dr who specialized in infectious diseases, but the reality is most of those docs don’t treat long or well enough (IF they even concede that you could, in fact, have Lyme since we don’t live in… you know… Connecticut. Those ticks must be very obliging to respect state borders or something, huh? UGG). Anyhow. My dr also said that it sounded like the ped would be treating Matt soon. He was basically REALLY shocked and REALLY surprised and dare I say… really EXCITED that this ped here in our little podunk town was actually… maybe… going to look into this and learn and TREAT.

I went about ‘business’ for the day (that means I called my mom…again… more on that in a min.), totally figuring ok… in a couple of days we’ll get a call from the ped’s office to make an appt and bring Matt back in to talk about what to do. I figured it would take at least that long for her to be able to get started on the looking into things.

Imagine my surprise, then, when the phone call at 15min till 5pm was NOT one of the kids’ friends, but was in fact the ped’s office calling to say that the dr had talked to my dr and what pharmacy should they call the scripts for the 2 different antibiotics into?

WOW! How cool is that? =)

Meagan’s check-up is this comin’ Monday so I’ll be able to at least briefly ‘check-in’ with the dr about Matt then and tell her way THANKS, while talking about getting Meagan started on treatment also of course.

Now, I said I’d talk more about Mom in a min, but I think for tonight I will leave that updating off. Why? Because this post is already long enough and I want/need to do this instead…

PRAISE THE LORD!!!

I don’t want to go any further without making good and sure that anyone reading and going “wow, what an amazing set of good fortune/coincidence” is fully aware that it is SO MUCH MORE than that. It is the work of an amazing, wonderful, powerful, loving God. Nothing less.

God has been leading me through all this from the get-go. From my first looking up my symptoms online, through giving Lyme a second glance, finding a doctor to sign the orders, finding a doctor to treat me, and now finding a doctor for the kids and ever-so-much-more in between! In so many big and little ways. Big scary leaps of faith like my going to a doctor for the first time in nearly 10yrs and telling my mom what was going on even though I was terrified of her reaction. Little, tiny, but-oh-so-important-and-specific details like exactly what bands need to show up positive and exactly what words/phrasing to use at the dr’s office and exactly what date to go and shirt to wear and a billion other things.

This whole health/Lyme/etc. journey for myself AND the kids has already involved a lot of prayer on my end… and I’m so thankful for it… a lot of guidance and answered prayers on the Lord’s end.

I can’t even begin to fully or adequately express just how blessed my family and I have been… and continue to be. ALL the glory belongs to the Lord Jesus in all of this. Again…

PRAISE THE LORD!

Posted: July 23rd, 2008 under God's Guiding Hand, Lyme disease, Matthew, blogging, faith, family, kids.
Comments: none

A few months back Mike and I had a rare night without kids. We did what most red-blooded-married-for-almost-twelve-years-American couple would do in that kind of situation…

He pulled out a movie and headed to the new TV in the living room and I headed to bed… to sleep.

Except I didn’t get to go to bed. I ended up having to watch the movie that I wasn’t interested in at all. Why? Because our bedroom floor hated me that night. Maybe it was mad at me for tossing my shoes a little too roughly… or maybe it was upset that I hadn’t given it a good mopping in awhile. I dunno. For whatever reason, as soon as I stepped into the bedroom, the floor stabbed me!

It did! A huge, gigantic LOG of the floor lodged itself in the bottom of my foot. (Probably because lodging itself in the top of my foot would’ve been too difficult for it… the stupid log!)

I gasped and hopped into the bathroom to find the tweezers whose usual job it is to keep the hair off my chinny-chin-chin. I flopped back over to the bed and pulled my leg up to inspect the carnage bestowed upon me by the evil wood floor. Yup, sure enough a GIANT log of a splinter that was starting to sting like crazy. Burn, really. Something about the fact that these floors are close to 100 years old…

So there I was with an antique telephone pole stuck in the bottom of my foot, but no worries! I had my trusty chin-hair-plucking tweezers! Alas, the bit of the redwood-sized piece of flooring that was sticking OUT of my foot trembled in fear of the mighty tweezers and promptly broke and fell off. Victory!

Or not… now there was nothing left to grab… or at least, not much. Yikes! I knew that if there was any hope of grabbing the teensy bit still on the outside of my skin it was going to take a steadier hand and eye than mine, so I hopped in to the living room and handed Mike the tweezers. He tortured me tried unsuccessfully to grab at the splinter with the tweezers, so I decided to soak my foot. The idea was for the splinter tree to kinda be drawn out and when I took my foot out of the warm, salty water…wahla! No more foreign object.

So I sat down to watch the totally boring movie (actually it was You’ve Got Mail, which is actually not-so-boring, it’s just I’d already seen it 5,392 times and so sleep sounded WAY more appealing) and soak my stinging, burning, ouching foot.

Notice I said the idea was for the splinter to be drawn out. The reality ended up being that all the warm, salty water did was soften the skin a tiny bit and wrinkle my toes. My foot was still impaled by the bedroom floor’s weapon of fierce owie-ness.

Now I have to stop this suspenseful (haha-hoho) tale for a moment and make a note that in the days just prior to being attacked by the floor, I had been worrying about my health and more specifically about what would happen if I got sicker before I got better and who would take care of me, because Mike was obviously not going to. After all he was all disinterested and seemingly unmoved any time I mentioned feeling achy or what-have-you. Any time anything medical or remotely so came up with the kids it was always left to me to handle… so obviously this translated into “I will be on my own and no one will take care of me”. Because my brain likes to put random conclusions on things that really make no sense.

Then Mike asked for a needle. He was going to have to perform surgery dig it out. OY VEY!!!

I have always hated splinters. Even just the real simple, little-bitty, out-on-the-first-try-with-tweezers kind. Once, as a kid, I got a splinter of GLASS (can you imagine the horror??) in my foot and I carried on so and screamed so much, that my mom was petrified the new neighbors would call the cops for child abuse. Splinters always seemed to mysteriously disappear anytime Mom even mentioned a needle. Not once did she manage to get near me with one. Come to think of it, there are probably some splinters still in my feet or hands that I didn’t let her get out with the needle and so the skin eventually grew over it. Yeah, I probably should not have let my thoughts wander in that direction… now I’ll forever be wondering just how much wood I’m carrying around under my skin…

Anyway. So Mike asked for a needle because the floor had done a doozy on my poor, size 7.5W (so not so little) foot and the chunk of wood was completely under the skin, inaccessible by tweezers. Great… not! Somewhere between the thoughts “AAAAAAHHHHHHH!” and “No, no, no, no, NO! NO NEEDLE!” I had the thought “there is even a reason for getting splinters and this time it might be an opportunity to show you that you can trust Mike to take care of you”.

And so, I gritted my teeth and tried with all my might to hold still while Mike dug at my foot with a needle equally as big as the log he was trying to dig out. (Or at least it felt that way.) My might wasn’t enough to keep me completely still or quiet, though. I did squirm and squeal, or at least Mike claims I did. (I think maybe he’s just foolin’…)

The thing is… Mike did get the splinter out… and he was VERY gentle in doing so. Yes, I said gentle in reference to a needle. I don’t know how he did it, but he did. I immediately declared him the World’s Best Splinter-Taker-Outer and have since referred the kids to Daddy at least twice with rave reviews of his splinter-removal skills.

Better than that though, I saw the whole episode for what it was… an opportunity to see that I could trust Mike to take care of me. I know that sounds hooky, but it’s totally true. It was hard for me to trust him with that needle, but I knew I needed to and I knew God wanted me to. So I closed my eyes and ‘handed’ over my foot instead of declaring the splinter miraculously gone and running and locking myself in the bathroom like I used to do as a kid. I’m glad I did, because I learned so much. Like how gentle my husband’s great big hands can be and how careful he is in trying not to hurt me BUT also totally capable of ‘doing what needs to be done’.

It’s a lesson that immediately came to mind a few weeks ago when my doctor told me I’d need IM (intramuscular…as in IN THE MUSCLE and so therefore very LONG and FAT needle) shots of B12 every day for awhile.

Somewhere between the thoughts of “AAAAAAHHHHHHH!” and “No, no, no, no, NO! NO NEEDLE!” I had the thought “It’s ok. Mike can do it and he’ll be good at it. It’ll be ok with him doing it.”

And truly… as much as I squirmed and squealed for the couple of weeks between hearing this news and actually getting everything in place (medicine, syringes, training) to start the daily injections… deep down I really wasn’t worried about it. That’s not to say I was looking forward to them or that I wasn’t a little curious as to just how it would feel, but I really wasn’t worried about the shots… as long as Mike was giving them.

I knew I could never give them to myself, which was actually the dr’s first suggestion. Needles are sized according to ‘gauge’. Kind of like wire. So the bigger the number gauge, the thinner the needle. Then they also have a length. The needles that Meagan uses for her growth hormone are super-thin and short. They barely go under the skin and they are just barely thicker than a hair. Seriously. They are 5/8″ long and 31 gauge.

I have a SUPER hard time poking those needles through skin… basically? I can’t bring myself to do it at all… which is why we use the Injectease. We put the syringe/needle in the Injectease, put the Injectease on Meagan’s skin and push the button. The Injectease pops the needle in her skin using spring-action and then I just push the plunger to deliver the meds. I don’t do any poking, though.

I use a big, fat 20 gauge to mix her meds. It’s almost as thick as the innards of a ballpoint pen. The needles I was going to be using? 1 1/2″, yes that is ONE AND ONE HALF inches, and 22 gauge!! You’ll notice 22 is closer to 20 than 31. There is a reason. They are THICK! Then the stupid pharmacy didn’t have 22 gauge and so Mike came home with a week’s supply of 21 gauge! Also, because they are so long and so big they won’t fit in the Injectease. Yeah… NO way I was going to be able to stick that in anyone, let alone myself.

Mike can, though. And very well, I might add. These are monster sized needles (in my opinion and since it’s my backside getting poked, it’s my opinion that counts), but the shots really, truly don’t hurt. He is THAT good! From the very first poke!! You’d think he’s been giving IM injections for years. I kid you not, his technique is better than the technique of most of the so-called professionals whom I can remember giving me injections.

Then today… oh my man is so good to me! He volunteered to take Meagan to her orthodontist appointment and then to go get the groceries…while I stayed home. How sweet, right? When he got back from the pharmacy (his 3rd trip out) he declared that “No one can say I don’t take care of my baby” and handed me a new pretty for my kitchen (a metal Coca-Cola tray) and a box of 22 gauge needles!!

Oh the romance that was in the air! Ok, maybe it wasn’t very romantic but it did make me remember the whole splinter/trust thing and prompt me to get on here and brag about how my hubby is taking good care of me despite my worries that he wouldn’t or couldn’t.

I am so thankful for my hubby and his gentleness!

Posted: July 14th, 2008 under Lyme disease, faith, lettin' hubby lead, the changing me.
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