Archive for the 'Lyme disease' Category

So many changes…

I’m sitting here waiting for some medicine to kick in so I won’t feel so icky. I have a million and one things to do, but right now I don’t feel well enough to do any of them. Since I have neglected this blog for the last 5mo in large part because I haven’t had time to dedicate to it, I thought right now might be a good time to try and do some updating.

Right now our little Chiweenie, Bluebell, is curled up with me in the chair. This is her favorite spot in the whole house…curled up with Mommy. She was supposed to be Matthew’s ‘therapy’ dog, but the ‘newness’ wore off or she started to aggravate him or something, because lately she’s been staying about 3in away from me at all times. That is, unless Matthew is actively playing with her. That’s ok, though, she helps keep my feet warm. LOL

Meagan and Matthew are out with a friend of ours feeding her horse. She started picking them up and taking them with her to go feed about a week and a half ago, and the kids are eating it up. They absolutely love it! Meagan has even gotten to ride Red a little bit. This same friend has kinda taken Meagan under her wing and is having her help babysit a couple of days a week. Meagan thinks it’s the best thing since sliced bread. She adores little kids and is really good with them, but I don’t feel she is mature enough to handle babysitting solo yet. This arrangement is perfect for her, though. Not only does she thoroughly enjoy the idea of having a job and a babysitting one (her dream job) at that, but she also has an older girl who is befriending her. She needs that desperately!

Matthew has been tagging along to go see the horse, and he loves visiting with the human babies, too, but he is not ‘working’. lol He’s able to work off a fraction of his energy by helping feed and take care of the horse, though, and he is always in need of ways to work off excess energy. Plus this arrangement also gives me a motivational tool that I can use with both kids. I tell them that they can’t go see Red if they haven’t gotten their school or chores done. =)

So what’s happened in the last 5mo besides the addition of Bluebell and trips to see a horse? A lot! My best friend’s ‘make-a-little-money-in-her-spare-time’ has turned into a full-time job. It pretty quickly became a full-time job for me, as well. Things grew that fast! Keeping up with orders has been tricky, to say the least. In the last month, we’ve been working hard to try and arrange things such that I could work from MY house at least 3 days a week, since Nov-Feb, it’s taken us both working (at her place) 5 days a week to keep up. That was fine for her business, but not so fine for our families. Her little one, my little Sweet-Cheeks had grown to resent her Aunt Chris being there every day when she got home from Kindergarten. Poor little mite just wanted her mama to herself. Oftentimes, we would end up working to about 4pm, which meant that her older kids would come home before I could get out of there, and that meant they felt like they didn’t have an attentive mama, too. Meanwhile, Meagan and Matt were (in a sense) eating it up that Mom was working full-time. To them that meant they could sleep all day, and then play video games and watch TV all night after Mom finally crashed.

I tried to ‘do school’ when I’d get home, but more often than not, I’d be waking the kids up when I got home around 4-5pm. It’d take an hour or more just to get them up and their meds in them, then I’d have to start fixing dinner. Mike would get up around 7-8pm, so it wouldn’t be until after he left for work around 9pm that I could really start any schoolwork. After a couple of hours of trying to figure out where each kid was in their work and trying to referee the complaining and bickering, I would start wearing out. Listening to them read out of their literature books would put me to sleep, of course, and so would waiting for one or the other to finish up the next bit so I could check it or what-not. I’d end up dozing for awhile and then around 2-3am manage to get their meds in them and then I’d go crash in bed, only to wake up around 8am to start all over again. The kids wouldn’t be anywhere close to ready for bed at 2-3am, of course, since they’d slept till 5pm or later, so I simply could not outlast them and that would leave them up watching TV or playing while I slept. Certainly they weren’t working on their schoolwork! LOL

That’s starting to change, though. We’ve been working towards getting things set-up where I can do what I need to for work from my house and only go over to my friend’s maybe once or twice a week to give her an extra pair of hands to help with packaging and shipping. This past week was the first week I was able to work from home, and it helped SO much! I still have massive amounts of catching up to do on housework, and the kids still aren’t fully re-adjusted to being up and doing schoolwork during the day, but I can definitely see a difference, already. We still have some kinks to work out, but this arrangement is going to work out so much better for both our families!!

Matthew’s sleep hours getting switched back to something closer to normal is paramount in managing his “mood disorder” according to his new psychiatrist. I’m not sure yet what to think of this doc. He wants to remove the BP diagnosis, which I do not agree with. On the one hand, I don’t care what you call it as long as it is treated properly, but on the other hand knowing what we’re dealing with is KEY to treating it properly. There’s no doubt in my mind he has BP I. I’ve done enough reading and research, there is simply no question this is what he is dealing with. Knowing that, I hate to lose that descriptor and go back to a vague “mood disorder” diagnosis. This doc on the very first visit without knowing any of Matt’s history, took one look at his med profile and said he was on way too much medicine. Ummmm…. no. While I would dearly love for Matt to not be on so much medicine, the ones he is taking we’ve determined through trial and error he NEEDS to be taking. Same thing for the dosing. The doc immediately (first visit, knowing nothing about Matt personally) decided to switch his Seroquel from 200mg in the am and 300mg in the pm to 400mg all in the pm. We’d tried that set-up before and it hadn’t worked. We’d come to the 2x/day split through trial and error for a reason…he needs it split up. I couldn’t get that through the doc’s head, though, so we switched.

The 4wks between the 1st and 2nd pdoc visit Matt slipped further and further into mania. No surprise, since his Seroquel dosing was messed with and the total dose decreased as well. God is still on the throne, though. We arrived an hour early for his second appt and so the Nurse Practicioner saw us instead of the pdoc. During the 10min or so we were with her, Matthew talked about random things and was talking very quickly (a sign of mania). He also got up out of the chair more than once and I had to physically put him back in the chair. In other words, he was very obviously manic-ky. I told her this was why we had split the Seroquel into 2x/day. So, the NP added the missing 100mg back in…in the am! She also gave us a script for Trazodone to help him get to sleep at a more reasonable hour.

The Trazodone is working well, but we haven’t seen any  improvements otherwise yet. It’s early still, and even though he is back to his full daily dose of the Seroquel, he is still getting only very little of it in the am making it available in his body during the day. Hopefully we’ll start seeing some improvement in the next week or two.

Also, I have found a therapist that I think would be really great for Matt, and I am trying to get an appt set up with him. We’ll have to pay out-of-pocket for him, but if he’s as good as he appears to be, it’ll be well worth it. He is a Christian counselor who works with teenage boys and his biggest focus is on encouraging them. This is exactly what Matt needs! He needs a godly Christian male influence in his life, someone who will encourage him in the Lord and help him with the managing of his emotions God’s way.

As for myself, since I am not pregnant yet, I think I am going to try and make an appointment with my old Lyme doc to get back on treatment. He just came out of retirement last week, and the timing could not be better! In the first few months after I ran out of the meds he had prescribed, I gained 60lb. The last 2-3 mo the babesiosis symptoms have been flaring back up with a vengeance…

It’s going to have to wait another month or two at least, though, since we just received the bill for Mike’s hospital stay back on Valentines. He has a thing for holidays. My first mother’s day (also the day we found out we were pg again) he had a massive heart attack and was Care-flighted to Dallas. He ended up getting two stents put in his heart. This time he went in for a stress test on the 13th because of some arrhythmias and other symptoms that had landed him in the ER the week before. The docs decided they didn’t want him even walking down the hall, let alone getting on the treadmill, so the took him down to the cath lab and he got another stent put in. At least this time things were caught *before* it turned into a heart attack!

Well, the kids are back now and my nose is telling me I need to go find some Benadryl, so I guess I’ll go try to hunt some up.

It’s Lyme Disease Awareness Month Again!!

I could type up a bunch of stuff about Lyme Disease right now. About how it has stolen several full years of my life and many, many aspects of my life over several MORE years. About how horrible and debilitating it is not just for the person who has it, but for their entire family as well. I could spout statistics to you or give you a VERY long list of symptoms my family (nearly all of us infected) have dealt with. I could recite scores of different medicines and supplements we’ve had to take… some of which have done wonders to help and others which only brought horrble side effects with no gain. I *could* do all that… OR I could share a link that came across one of my Lyme Disease email groups that tells about some of the brain problems that Lyme causes.

The brain problems are the most difficult to explain, the most difficult to understand, and the most difficult to see (obviously!) And for me they were the ones that ‘cinched’ the deal and convinced me there absolutely was something *wrong* with me and that I *had* to get help. That’s because, being born with Lyme, most of the physical problems I was having when I “crashed” a few years back, were just worsening of stuff I’d been dealing with my whole life. The physical stuff I could write off as being just a natural part of aging…at least for me. (Never mind the fact that I was in my mid-20s!)

While I could write off the physical stuff by itself (and had been), it was when my brain “crashed” that I finally realized I was truly sick…and that the physical stuff wasn’t actually normal at all…and everything was likely connected somehow.

The bad news was because my brain (which had always worked REALLY well before) was now malfunctioning on a grand scale, while I realized I was sick and with the Lord’s help even managed to get an idea of what was going on, it took me over a year to actually figure out what to DO about it. Why? Simply put… my brain was too sick to think!

Only by the grace of God and the help of a (now-best) friend who was also sick with Lyme, but in treatment and was making good progress over that year (making her better able to think than me by far!) was I able to get in treatment. For months I was pretty sure what was wrong with me but could not for the life of me figure out what to do next. I tried to explain the problem to my husband, but since my brain was malfunctioning, that didn’t work so well. It was only when my friend was well enough that *her* brain was functioning well enough to “take over for mine” that anything was actually done. I have no doubt that’s because *she* knew exactly…first hand…what the problem was despite my inability to explain things.

If this article had existed back then (and I’d been able to process enough of it to realize just how big of a jewel it is), I have no doubt that this would have saved me months of misery, as it puts into very easy-to-understand words just exactly what I was dealing with and why (and how) I needed my husband to help me. If only he could have read this back then… =)

So, without further adieu, here is the wonderful treasure of Lyme Disease Awareness…

This Is Your Brain On Lyme

Back-To-School (and other stuff)

It’s Back to School time here. At least, for the females in the house! Meagan’s school (through the church) starts tomorrow. Matthew (homeschooled) won’t start until after Labor Day.

Something new this year, though. *I’m* going back to school, too! Not just as a teacher, which wouldn’t be anything new, but as a student!  I’ve enrolled in a 3yr bible college, taking 1.5 credit hours a semester. It’s called Faith Baptist Institute, and you can learn all about it here. It’s administered via DVD through our church. There are 12 students in our class. =) *We* went back to school last Monday, the 16th! 

There’s something really cool about that date… I remember when I first started high school, as a freshman, school started on the 16th. I remember because that was the year my brother, James, was born and he was exactly 4 days old when we snapped a polaroid of his chunky little cheeks for me to take to school to show him off to my friends. So I started high school on Aug 16, 1992 as a 13yo and now here I am FINALLY starting college on Aug 16, 2010 as a 31yo. How cool is that?

I’ve actually been preparing for ‘back-to-school’ for lots of girls this summer. First I made a bunch of new culottes for Autumn and Ashlin (my adopted nieces) before we left for Arkansas. Then I bought school supplies and got my registration taken care of. Last week, of course, I went back to school, and then the rest of the week I spent making and mending culottes for Kylie (another adopted niece) and letting out uniforms for both her and Meagan.

You’d think that would’ve been the end of it, but nooooo…. Our bible class (actually 3 classes, but we only meet 1x week, and do all 3 in one night) met again tonight and then AFTER that (and we don’t get out till 9:30pm) I had to mess with MORE uniforms. Not for any nieces or nephews or even Meagan, but for Meagan’s DOLL – Samantha! LOL

Ok, so I didn’t HAVE to, but I had promised Meagan I would make her a uniform skirt back several months ago, and she really wanted it for the first day of school. I just finished it before I sat down to type this post up, and when I snipped the last threads and looked at it, I realized I messed up the pleating HORRIBLY!! =*(

Not in the pressing of them. That I could’ve fixed. In the sewing. I don’t know how I managed to do it, but the front pleats are not quite centered correctly (well, neither are the back ones…they are actually worse), and then on top of that the front and back pleats don’t even come close to matching!

The design of the skirt is such that it has a center solid ‘flap’ with 2 pleats on either side. Well, in the front the center piece is the correct size, and the pleats are just fine, except the whole thing is off-center. In the back, though….!!! The center section is at LEAST half again as wide as it is supposed to be, if not double! I don’t have a clue how I managed that, since I marked the pleats on both the front and back at the exact same time and in the exact same places (I marked one off the other, so I know they matched).

I feel like such a dunce and am so totally NOT happy at ALL with the final product, obviously, BUT it is going to remain the way it is. I can’t stand even thinking that, but it’s got to. For one thing, to undo all the stitching it would require to get back to the point at which I could rearrange the pleating, would take a couple of hours at least (which I don’t have). It would actually be much simpler and quicker to just start over from scratch. Problem with that is I have no more fabric! Last year she switched to wearing just skirts for her school uniform, so I just took the top of the jumpers off instead of buying new skirts. That’s how I had the fabric. She only had two jumpers, and it took almost every bit of both pieces to make the skirt for the doll. All that’s left is the skinny bits that came down from the shoulders and met in the front at the waist to make a V.

So, Samantha will just have to live with a VERY asymmetrical (and not in a fashionable way, either) school uniform skirt. Somebody doesn’t like it, they’ll just have to learn to deal, ’cause I’m not spending any more time or effort on a skirt for a DOLL! lol

I’m still not even done with the back-to-school sewing, though, believe it or not. Tomorrow I need to make said doll a blue uniform shirt! Plus, I think all but *maybe* one pair of Meagan’s 458 pairs of culottes need mending. *sigh* If I’m feeling real frisky or insane, I’ll probably end up making Meagan and her doll hair scrunchies out of the scraps I have left.

In other news… =)   Mike went to church with us last Sunday am. He came to Sunday School with me, and left towards the end to come home and get the Strong’s Concordance. He tried to start/have a conversation/question with my SS teacher between SS and worship service. It didn’t work out so well, though, since my SS teacher is also the music director and he was already running late getting up to the podium! LOL

So, instead, he agreed to let him come by Thurs eve (before he had to leave for work) and answer his questions and talk then. Marcy, my best friend (and adopted sis!), came by and picked the kids and I up and we went to her place while her hubby came over and talked with Mike! This was so totally a work of God. Not even 6mo ago when Marcy and I brought up the idea of David coming over and talking with him, Mike had said there was no point, it wouldn’t do any good, he wouldn’t do it.

Then, THIS week, Mike came to Sun pm service with us! =) He’d actually told me last week (before the first time he came) that he would attend with us on Sun am for 2-3mo to see if it would make any kind of difference or help at all with Matthew’s attitude/respectfulness/discipline. So this week was sorta kinda a cheat. lol In the morning when it was time to leave he bailed saying he was just too tired and not up to it, but that he would go with us that night (which, of course, he did).

When he told me he’d start coming to church with us, I almost fainted! When he said he’d KEEP coming, I thought for sure I would have a heart attack! I didn’t get my hopes up, though, because… well… this was MIKE coming to a BAPTIST church we were talking about.  I wasn’t going to hold my breath, ya know. Nor was I going to truly believe it until I saw it… which, praise the Lord, I did!

I thank the Lord that Mike is giving this a go! It’s a HUGE blessing and borders on being miraculous, really. I’m so proud of him for following through thus far! =)

Speaking of being proud of him… I’m also one proud puppy over the way (and the length of time it took) he got our busted hot water heater replaced with a brand new one. Especially since it required running a new electric line (it’s direct wired to a breaker, not plugged into an outlet). We were only without hot water for about a week and a half. MAJOR improvement over the 2 years it took to fix the ginormous holes in the floors so the bathtub could be put back in the bathroom! LOL

In other, other news… I am officially without a Lyme doctor again. Mine retired the end of last month. =(  I’ve already started running out of different meds, which is not cool. It is totally not cool, because running out of them, is leading to symptoms flaring back up. =(  First I ran out of Mepron, right about a month ago. Within a week, I was having bad headaches again, as well as night sweats and muscle cramps and bone and joint pain. Prior to running out I had NONE of those except some mild joint aches in the morning when I first woke up. After he added the Plaquenil to my mix, I was feeling almost human again. Well, really MOSTLY human. I did great on vacation and was doing just as well until the Mepron ran out.

We took a weekend trip down to Austin a couple of weeks back (after I ran out of the Mepron) to see my very talented cousin, Scott, perform in the Zilker Musical. This year’s presentation was Annie, and Scott got to shave his head bald and play Daddy Warbucks! LOL The play was GREAT, but *I* was not.

We left Friday and were supposed to camp. We didn’t, though. When we got to the campsite (around 12am) it was soooo covered in brush that Mike decided it would be far too dangerous. So off we went to find another campsite. We drove around Lake Travis on back roads that went UP and DOWN and curved around so much they literally had switchbacks in several places for like 3hr! Then we drove around some more for another several hours. All the campsites were either full or locked, so we ended up parking at a WalMart at about 5am to try and catch a couple of hours of sleep before the campgrounds opened back up.

The driving seriously MESSED ME UP! It wreaked absolute havoc on my central nervous system. I was sooo dizzy and off balance and edgy and I don’t even know what all. My CNS was just so irritated!! When we got to the campground, I could barely walk. I was soooo sick and weak! Then after we pitched the tent, we attempted to sleep until time for the play. I couldn’t. The heat was unbearable.

My muscles in my leg and back were cramped up so bad by the time we got home that I couldn’t straighten my leg at all. I was stuck in bed for 3 days! This after a 2 night trip. We were gone for 10 nights when we went to Arkansas and I didn’t have any problems at all and didn’t need any recovery time!

Then last week, after church on Sun and class on Monday night, I was stuck in bed all day Tues. Too sick to move. I’m backsliding, or relapsing, or whatever you want to call it so quick it’s not even funny. =(

I don’t know what I’m going to do. Hopefully I won’t get too much worse before we can figure out what to do about a doctor.

YIKES! It’s almost 3am now. I guess I’d better go take my meds and climb in the bed!

Jan-May and then… VACATION!

Jan – SICK

Feb – SICK

Mar – started Mepron, Cipro, and Zithromax, quit rifampin. SICK

Apr- hmm, feeling not so tired, still HURT. Added Plaquenil.

May- hmm, now not very achy, but TIRED.

June- vacation in Arkansas. 9 days/8 nights in Hot Springs, 4  days/3 nights in Ft. Smith… surprisingly FEEL PRETTY DECENT other than the amusement park day.

Now it’s July and I’m still feeling pretty good.  I did have to take a week to recover after vacation, but it wasn’t a hard recovery. I am SO much better than I was 2yr ago!

I can remember being out in the sun for 2hr, just long enough to have a teensy un-birthday party for Meagan in May of 2008 and I literally couldn’t MOVE to get out of bed for almost 2 full days. It was on a Friday, and I was barely creeping around Sunday evening.

Granted this was technically JUNE, but we left on the 6th, so it was real close to right at 2yr later. We drove to Hot Springs, which alone would have done me in 2yr ago. Then most days we were out and about all day. We spent a day walking around Little Rock. We played mini-golf (yes in the sun!). We spent a day and a half walking around Hot Springs. We spent a full day at a science museum, and another at an amusement park (again with the sun!), and then at the END we camped for 3 days and 2 nights!! In between there were lots of smaller museums, lots of shops/shopping, lots of swimming, and all kinds of other stuff!

We got back on a Thursday afternoon. Friday I went to Mom’s and spent the day there. I was in church Sunday AM and PM both!! (First AM service I’ve made it to in about 6mo!) I did, however, spend the next week (which happened to be VBS…no I did NOT volunteer this year) sitting in my recliner, “recuperating”. =)

Aside from being VERY exhausted and moderately swollen after the amusement park (no sunburn, as I wore a big floppy hat), and the HORRID night I had with my eyes protesting the WAY too chlorinated pool at the hotel, I came through that vacation unscathed!

There is absolutely NO WAY I could have done any of that 2 yr ago. Truth be told, when Mike and I first started talking about maybe doing a vacation this year back in Feb, I wasn’t sure I’d be able to do anything at all besides stay in the bed at the hotel. We decided from the get-go to take Dad’s old wheelchair with us so that I could maybe at least do a museum or two. Ended up the only time it was used was as extra seating when we were camping!

I thank and praise God for that vacation and the memories we were able to make with the kids. We didn’t end up with very many GOOD pictures, but we sure did have a lot of fun. The kids got to go to a water park for the first time, and they both rode a roller coaster for the first time. Actually they rode ALL the coasters… some more than once! I didn’t ride anything except the mini-cars and the log flume; mostly I was the pack mule (the kids got souvenir cups, and then after several, several dollars spent on a game on the midway they each got a stuffed animal with a Magic Springs t-shirt on it), but that was ok, because I didn’t care to ride anything. I just wanted my kiddos to have fun and be ‘regular kids’ for awhile.

I must admit, I did spoil them rotten while we were on vacation, though. Hey! Who says you can’t spoil your own kids for short intervals of time? *wink*

They got little souvenirs nearly every place we went. I spent more $ on things that I would normally never have spent so much on. I bought things I would never have bought at all. Each kiddo had almost $50 in spending money to start with (mostly from helping a neighbor down the street, but they each got a 10 spot from me for helping clean the house before we went), and even after they went through all of that, I still kept buying them stuff. LOL

I know as a kid we never had that kind of spending $, and whatever $ we DID have, any and ALL souvenirs came out of that. Once it was gone, it was gone. Looking back I don’t mind so much, but I know at the time I thought it was  a rotten deal, and it made me feel all the more poor and made me worry all the more about our financial situation at home.

I spent so much partly because of that, and partly just because I LOVE  The spending $ on kids. In the 2-3 weeks before we left Mike kept expressing his concern that we would have enough money to even GO on vacation, let alone do anything once we were there.

The kids are so different! Meagan was never bothered. She just trusted we would go and we’d have fun. Really she was only interested in a pool and coasters anyway. We didn’t tell either kid what we were going to do, but she knew I’d promised one night in a hotel with a pool, so she was happy. She wasn’t even all that concerned with having spending $, though she certainly would have changed her tune had we gone and Matthew had $, but she did not!

Matthew on the other hand… he’s so much more mature intellectually that he was near panicked by the end of the last week before we left. He was in tears many times, worried about whether we would even get to go. Right up until the day before we left he wasn’t *really* sure we were going on vacation, despite my assuring him over and over that yes, we had the $, and yes we would get to go. I couldn’t get Mike to keep his concerns out of eyesight or earshot of the boy, so it didn’t really become real to him until  we were there at the hotel. Poor kid!

We did have a bit of behavior problems with Matt a time or two. Mostly because he was SO excited to be able to swim in a pool that he didn’t want to go do anything else. He wanted to be in the pool all day every day and sometimes got upset when we said no to swimming because we were going to go somewhere.

The kids did most of the ‘doing’, but then that’s because momma has been pretty well an invalid for the last 3yr and daddy is such an old geezer. LOL They got to do some unique stuff, though. We let them ride up to the tip top of a mountain tower on Hot Springs Mountain by themselves. They rode all the coasters by themselves, of course, too. They even “virtually” rode a coaster in outer space! In one of the shops, the got to ‘mine’ for gemstones and keep what they found. They shopped all on their own lots of places, and Mike and I pretty much followed them around the science museum where all the exhibits were interactive. They rode bumper cars several times, and played a bunch of different video and midway games. They also got to ride go-carts. Matt wasn’t quite tall enough to drive (so the guys had a cart together), but Meg was.

They came home with so much loot! Gemstones and games, and toys, and trinkets, and even t-shirts from the science museum. And jewelry! Oh the jewelry! Granted Matt didn’t care much for this aspect of the trip, but even he got a few pieces. These new-fangled “silly bands” things? I bought a pack from an overpriced toy store for them to split. Even had some glow-in-the-dark ones. (They also got an overpriced Travel book of games there.)

For Meagan and I, probably the highlight of the trip (ok, for Meg it was prob the pool and the coasters, but this was definitely 3rd!) was a jewelry store called Charmed! in Hot Springs.

I first saw it because it was next to a Cato store which I wanted to stop in and look around in having never been to a Cato store before, and having some spending $ of my own. (I made up about 10 pairs of culottes for my best friend’s oldest girls just before we left.) I saw the sign and thought “oh boy, keep Meg outta there! I’m sure everything in there is outrageous!”

We went to Cato and I tried on several skirts. I settled on a beautiful white linen skirt (size 10!!) and a very pretty hot pink plaid belted shirt. Under $30! Not too shabby! When we came out, Meg begged to go to the jewelry store. I started walking that way ONLY because past the jewelry shop was an ice cream parlor and I thought we might get ice cream.

As we got close to the door, though, I noticed a sign in the window that said “all jewelry $1”! My next thought was they were either going out of business or else it was a junk 99cent kind of store.

Wrong on both counts! They had the CUTEST stuff! All kinds of different styles, and a fair amount was completely metal-free! I ended up buying several pieces for Mom, a couple for Meg and I, and Matthew bought each of my best friend’s 3 girls (he has a crush on the middle one, ).

They also had grab bags for a dollar that had either 2 or 3 pieces of the $1 jewelry in them. A LOT of the pieces were actually SETS, too. Not just in the grab bags, but throughout the store. Like a necklace and earrings, or 2 bracelets, or earrings and bracelet, etc. Meg and I were hooked. We went back I think 3 more times and in the end we bought several pieces for each of us and Mom, as well as a couple of pieces each for my best friend, her sister, their mom, and their 5 girls. Oh, and about 25 grab bags all together! LOL

From the grab bags, we picked what we wanted and then once we got back and handed stuff out, we let my friends got through and pick out what they liked for themselves and the older two girls.

All in all we had a blast, and Mike has even said that he thinks we ought to go camping for a night or two at a time more often throughout the summer.

Like I said before, the first week back the kids had VBS from 7pm-9pm. They spent most of the next week at Mom’s, and stayed at a friend’s one night. Then Monday am (it’s Wed night now), they left for summer camp up in Oklahoma. They’ll be back Friday afternoon sometime. Busy summer for them so far!

The only bad news since Jan is that my Lyme doctor is retiring at the end of this month (July). This is a very scary proposition, since the next closest specialist is WAY out-of-state. I may be doing a lot better, but my symptoms are by no means completely gone. I am not well enough to stop antibiotic treatment, and yet I may not have a choice once I run out of the prescriptions I currently have. I pray that I don’t relapse much or very quickly once that happens. Relapsing is inevitable, but hopefully I won’t be as bad as I was 2yr ago for a long, long time. Regardless, I thank the Lord for the last couple of months of feeling mostly ‘back to normal’. I’m so glad, too, that we were able to go on vacation during this period of relatively good health.

Sick of being sick

And yes, I know I probably already have a post entitled something very, very similar. Oh well. It’s the truth.

I’m so sick of being sick!! UGG! The antibiotic combination I was on last summer really seemed to be doing the job and getting me well. I was able to get a lot of work done helping Mom get their new house ready to move in. Around August, the doc decided we should be through treating the bartonella and changed my meds, and it’s been bad ever since. =(

It didn’t take long at all to realize we were nowhere near through treating the bartonella, but it’s sure taking a long time to get the meds tweaked back to where I’m making any improvements. =(

I’ve missed SO much church in the last ew months, it’s unreal. I had to go off all antibiotics completely in Dec because my white blood cell count was so low. My doc wanted me to see an hematologist, but without moolah, that was a pipe dream, of course.

I finally was able to start back on the bartonella antibiotics this month. I knew I was going to feel worse for a bit before it started getting better. That’s the way it always is, so that I expected. What I didn’t expect, however, was a ‘relapse’ about 3 days into the feeling better stretch. =/

Last Wednesday, I made it to church and answered several comments by friends along the lines of “Where’ve you been? You been having problems with your Lyme?” with a smile. I was finally starting to feel better and could see a hint of the good health (relatively speaking) I’d had last summer. I’d even gotten some housework done before going to church!

Friday, I got some more housework done, though I was feeling a teensy bit nauseous. Dad came over and took the van out to get the front-end aligned and the oil changed. (Actually, they ended up doing a completel lube job on it.) Then the kids and I headed over to Mom’s for game night. The first one since Christmas.

I felt pretty good. I was having a good time talking with Mom and was feeling encouraged about my housekeeping performance. (I’d been real discouraged, doubting my abilities… feeling like I really have horrible housekeeping habits and was ultimately just a lazy lump of lard.) Having felt a little better over the last few days, I’d just fallen back into a ‘habit’ of getting laundry done, and picking up the house. I was realizing that when I am actually feeling ok, I don’t have to force myself to get housework done, I just do it. The lack of housework getting done is actually directly tied to how lousy I’ve felt the last several months.

So I was feeling a little less like an awful wife/mom/housekeeper, and having fun playing Scrabble when all of a sudden the teensy bit of nausea turned into a WHOLE LOTTA PUKIN’! =(

Game night kinda ended there. I spent the rest of the night and all day Saturday on mom’s couch trying to avoid the dry heaves (since there was nothing left to bring up!). I finally drug myself out the door and back home around midnight. By that point, my head was killing me again. (Upset tummy = too chicken to try and swallow pain pills = misery.)

Sunday morning, the kids rode the bus to SS and church (thankfully!), while I slept… all day. Around 3:30pm I braved some super sweetened lemon water and took some pills. I slept off and on the rest of the day and into the night. Chills, sweats, aches, stiffness, and oh-so-tired!

I don’t know if I was unlucky enough to catch some virus going around right at the time I started feeling better or what, but it certainly wasn’t pleasant. And of course it meant I missed more church services. =( 

I’m no longer sick to my stomach (I even actually ATE something late last night!), but I’m still tired and my head still hurts.

Matthew didn’t get either of his allergy shots last week, and I completely forgot about an appt Meagan had with the dr last Monday. I need to get his shots scheduled for this week and then maybe get a load of laundry done. I’m not sure I’m going to be able to manage much more than that today… Still. *sigh*

Meanwhile my children are growing up in a filthy house and having to feed themselves. I’m just sick of being sick. It’s that simple. =(

Sick of Failing at, and Being a ‘Single’ Mom

It’s 11pm and guess what. Both kida are still up. I’m so frustrated it’s not even funny. I am SO sick of practically raising these kids by myself. It’d be one thing if I really WAS a single mom… as in I was the only parent responsible for raising them and the only one around to do it.

That’s not the case, though. I have a husband. A good man who works hard to provide financial support for us. Unfortunely that’s just about the only kind of support he gives us. He accepts the fact that I’m sick, have been for a long time, and looks like I will be, and he supports me in that regard in so much as he understands why I can’t keep the house clean and rarely feel like cooking dinner.

So why, WHY???!!!!! can he not see I can’t raise these kids by myself and HELP? The kids are almost 12 and 11 and for 12 years now I’ve been not just the primary caregiver, I’ve been the ONLY caregiver. I can count on 3 fingers the times in the last 12 years that Mike has taken charge of ‘bedtime patrol’ and made sure the kids get ready for bed and get in bed. Even fewer are the times he’s done so and make sure they went to bed with all their chores done and all their medicines taken.

Every single solitary day, if *I* don’t make sure they take all their medicines, Matthew flat-out refises to do as he know he’s supposed and will lie to us that he’s taken his meds.

Now, even WITH his meds, Matthew is an extrememly rebellious, disrespectful, disobedient, rude, mouthy, selfish, proud kid. If he doesn’t take his meds it is easily 100x worse.

So make sure he takes his meds, you say. That’s fine, I do try. However there are times when I just crash. My body is fighting all these infections and even with all the help it gets from multiple high-dose antibiotics, it still wears me out. And of course, extremem fatigue is one of the lovely features of these infections I’m fighting.

So it happens that some days, I’m so exhausted I don’t even hear the TWO alarms I set each night. On the days that Mike is off, or he knows the kids do not have school, he will turn the alarms off and just let me sleep. That’s wonderful and so sweet of him, you say. Sure, but if he’s not going to make sure Matt gets his meds and then go to bed without even saying he’s going to bed, just disappear all of a sudden right when Matthew’s lack of meds REALLY starts kicking in, leaving me to deal with all the hate, filth, disrespect, threats, and disobedience he spews at full force by myself, then I would much, MUCH rather he wake me up!

I’m so sick and tired of being the only one who even attempts to get the kids to take care of their chores, school/homework, medicines, etc. The only one who even attempts to discipline them.

Maybe if he weren’t here effectively being a bump on a log, my attempts at disciplining, instructing, and so forth, would be more successful. Or maybe not. Either way at least then I wouldn’t have the frustration of having to deal with it all myself while their father, just as responsible for them as I am, plays his video games, reads his book, or sleeps through all the nonsense.

At least then I wouldn’t have the frustration and heartbreak of watching my husband, supposedly my best friend, my leader, and my protector stand by and do nothing at all about his son calling me horrible names, threatening to kill me, throwing things at me, hitting, biting, or kicking me.

I’ve alwys had this picture in my mind of the way a husband/father stands up for his wife, and disciplines the disrespectful child for not saying “yes ma’am” or “no ma’am” to her. As much as I know in my head that there are fathers out there who would do that very thing because it’s what it right and how God intended for fathers to be towards their wives and children, I just can’t make my heart really believe it. It’s like make-believe, pure fantasy.

I love my family so much. Even the selfish, proud, rebellious, hateful son I have.Even the thoughtless, selfish, lazy husband I have. Meagan has moments when she doesn’t thrill me as well, but I sto;; love her, too. I love them all. I’m just so very disappointed in the way a couple of them are turning out. It breaks my heart in so many, many ways.

I hate that I’ve failed to turn out two good kids. I know one is a good deal, but it’s not enough. I want ALL my kids to turn out good. I hate that I’ve failed, and I hate that their father has failed. I know Jesus can make things like this turn around 180 degrees, but I’ll tell you the truth, it sure doesn’t seem very likely for us. I have prayed for so many years, and while we did see a little progress once we were able to get Matt the medicine he needs, it’s been pretty sparse.

I’ve heard our pastor say many times that all our failures are prayer failures, so I guess that means I’m not doing such a great job at that either.

Oh I’m not going to quit trying, so I won’t say I’m a failure, but I have failed, and I don’t know anything new to try or to change to NOT fail again. Most days my son’s future looks very. very dark . 

I’m just so frustrated and tired of fighting what appears to be a losing battle, and doing so on my own. I am sure lots of truly single moms feel the same way, amd I understand that it is different for them. I understand that I can’t understand completely how difficult it is for them, since they are having to be a single parent AND a single provider at the same time. But I also don’t think it’s a stretch in the least to call myself a ‘single’ mom. I feel a closeness to single moms, I suppose you could say. I feel for them, because I have at least a small idea of what they have to deal with and face as a single parent.

I just wish that American fathers would start acting like true fathers. Get saved if they’re not, make sure they are if they are, and thenpick up a bible and find out how they are supposed to act and then listen to the leading of the Holy Spirit, and BE the kind of father God wants him to be. Maybe then us single and ‘single’ moms wouldn’t have to carry so much on ourselves.

It’d be really great if they would also learn what God expects of them as husbands, too.

It’s Invisible Illness Week… who knew?

Unfortunately that is exactly the problem with invisible illnesses. They are the ones that cause devastating, debilitating effects, but to others if they find out the patient is ill, would say… They have _____… who knew?

The CALDA blog called Touched By Lyme had an interesting entry recently… “TOUCHED BY LYME: 30 things you don’t know about Lyme disease” Here’s mine—

30 Things About My Invisible Illness You May Not Know

1. The illness I live with: Lyme and other tick-borne infections
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: birth – 1978
4. The biggest adjustment I’ve had to make is: to not volunteer to help do things that tax me physically
5. Most people assume: Lyme plays itself out in a few weeks; sooner if you get a few days of antibiotics
6. The hardest part about mornings are: first getting out of the bed
7. My favorite medical TV show is: Mystery Diagnosis but I only see it infrequently because I can’t afford cable.
8. A gadget I couldn’t live without is: my shower seat!
9. The hardest part about nights are: getting to sleep around the pain and anxiety
10. Each day I take 42 pills & vitamins.
11. Regarding alternative treatments I: have not tried any
12. If I had to choose between an invisible illness or visible I would choose: VISIBLE, one that SCREAMS I’m sick
13. Regarding working and career: I can’t work
14. People would be surprised to know: how much pain I have and how often I am bedridden.
15. The hardest thing to accept about my new reality has been: I can’t do things I want to do or used to do.
16. Something I never thought I could do with my illness that I did was: go to junior church camp as a counselor!
17. The commercials about my illness: are non-existent.
18. Something I really miss doing since I was diagnosed is: waking up, going through the day, going to bed… without having to stop and take a bunch of pills.
19. It was really hard to have to give up: homeschooling
20. A new hobby I have taken up since my diagnosis is: sleeping
21. If I could have one day of feeling normal again I would: would not fully know it, as I’ve been ill since birth.
22. My illness has taught me: I have to take care of myself in order to take care of my family. Also, how to go to a doctor and talk to him about ME.
23. Want to know a secret? One thing people say that gets under my skin is: it must ‘all be in my head’ since Lyme is ‘cured’ by a few days of antibiotics. My doctor isn’t looking to cure me. Just get me into remission.
24. But I love it when people: ask how I’m doing and actually want to know the truth.
25. My favorite motto, scripture, quote that gets me through tough times is: God will not put on us more than we can handle. Jesus will help me through.
26. When someone is diagnosed I’d like to tell them: as much as I can about what to expect in the coming months, and that yes, it WILL get better… eventually.
27. Something that has surprised me about living with an illness is: how totally it affects every little thing you OR your family do.
28. The nicest thing someone did for me when I wasn’t feeling well was: prayed for me and told me they were.
29. I’m involved with Invisible Illness Week because: Most of my family (parents, brothers, children, myself)and some dear friends of mine all have one or more invisible illnesses.
30. The fact that you read this list makes me feel: blessed.

I’ve read through some of the others and one thing that I have to agree with them on (but I answered differently) was that most people think I am ‘normal’ or ‘not sick anymore’ – if they ever knew I was. These infections mess up and take over so many different things in the body it takes months, years in most cases, to be ‘not sick anymore’. I am doing so much better than I was a year ago, but I am nowhere near ‘not sick anymore’.


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