This is my brain on Lyme Disease…

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?

Meagan’s in a tiff, but I got off my duff

Attitude. She’s ALL about the attitude this week and I have to say…

I do NOT like it!

She is so sassy, disrespectful, stompy, slammy, tantrummy this week. *sigh*

I have to wonder if she is feeling ‘left out’ in that Mom and now Matt are confirmed “Lymies” and are taking medicines. This past year it’s mostly been her that has had the medical attention, what with her braces/headgear, the ingrown toenail, the monthly IM shots and then the second daily sub-q shot instead, and the pulling of the 7 teeth, etc…

She needn’t worry. Her dr appt is Mon, and she’ll be getting more bloodwork done that day, too. I’m sure she’ll turn it into another huge ordeal. And besides, it shouldn’t be too much longer before she starts treatment for the Lyme, too.

My girl. She is so weird. lol

Cool note for today- Guess what I did?!! No really… guess!

I did FOUR loads of laundry (well the 4th is going now) and a load of dishes and made dinner. All in one day! AND… I even folded the WHOLE load each time without my arms giving out! Woohoo!!

In the last two months I haven’t been able to do more than one thing a day. Like wash the load of laundry, but not fold it. Folding would be the next day or two… Make dinner, but no laundry or dishes. Most days that I’ve managed to do ANYTHING this has been it… food, but no cleaning. Cleared the table one day, but of course that was it for the day. You can imagine the state of the house. You probably shouldn’t (it would be much more pleasant for you that way), but you can.

I hope I have at least this much energy tomorrow too. I might actually be able to make a dent in the housework big enough to notice. Maybe I’ll re-discover our forks, as they all seem to have gone missing.

Sick much? and also I wanna brag on God, cause He deserves it!

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!

Should I Stay or Should I Go?

Darling you got to let me know
Should I stay or should I go?
If you say that you are mine
I’ll be here till the end of time
So you got to let me know
Should I stay or should I go?
-from the song “Should I Stay or Should I Go? by Clash

Found this morning on a crumpled piece of notepaper left on the table:

WWW.MUSICLYRICS.COM

Gary Allen “Empty Glass”

Kevin Fowler “Hand me to love”

Grechin Wilson “Come to Bed”

Tim McGraw “Like We Never Loved”

Kasley “Never Should have let you go”

Tank “Please don’t go
Maybe I deserve

Sisgo These are the times

Slipknot “Lest we forget”

Guns and Roses November Rain

Bon Jovi I’ll be There for You

Boyz II Men “End of the Road

Bon Jovi “It’s my life”

It appears to be my husband’s handwriting. I do not know what to think. Mike’s musical taste (as in the ONLY things I’ve EVER heard him listen to…) are pretty set… the ‘oldies’ (especially Peter, Paul, & Mary) and a few select ‘others’… like the Bangles and Harry Chapin. He definitely does NOT do heavy metal or country. In fact, when we first got together and I listened to county music, I was forever getting teased about it. He despised the whole genre and would not put up with it on the radio in the car (or CMT either!). Heavy metal wasn’t really teased, but only because neither of us liked it… at all.

So here we have a list of ‘mushy’ songs (at least I assume they are all mushy… I don’t actually recognize any of them, but they all seem mushy), at least one of which is by a country music artist, one of which is by a young ‘hip’ boys band, and three of which are by heavy metal artists. The other artists I’ve never even heard of!

I don’t know what to think. I have tried all day now to come up with some ‘explanation’ or ‘story’ behind this list… Here are 3 very different explanations I came up with:

1. A list of song titles for an “I love you and hope you feel better soon” CD for me (wow! talk about my self-centeredness coming through, huh?)… that was compiled either through the help of musiclyrics.com itself or by one of his coworkers with the suggestion to “look them up on musiclyrics.com”.
2. A list of song titles for an “I love you and am really sorry to do this, but really it’s better this way…I’m leaving you because I don’t love you anymore (or I love someone else)” CD for me (ok, and this one would be the paranoia coming through…) that was compiled either through the help of musiclyrics.com itself or by the good-for-nuthin-husband-stealin other woman with the suggestion to “look them up on musiclyrics.com”.
3. A list of song titles he heard, liked (probably for one of the above reasons), and wanted to know the complete lyrics to… all played on a single radio station he was listening to at work.

These were the three ‘most likely’ scenarios my mind came up with. From those three, my highly reasonable, list-making, option-weighing mind tried to objectively narrow down THE most likely…

1. Mike has made me ‘mixed tape’ type things in the past. Inevitably they contain a mix of oldie-but-goodie songs, and although they are generally meant to say something like “I love you and think you are special enough to make this special mix CD for you“, they have never really been the kind that says “these songs express my feelings for you”. More like “these are songs I know, or at least THINK I know, you like and most of them I like too and that may actually be why I think YOU like them or they have the word love in them and so therefore are mix-CD worthy“. Things like “Purple People Eater”, “Tom Dooley”, “Love Potion No. 9”, “Leavin’ On a Jet Plane”, “Alice’s Restaurant”, “Great Balls of Fire”, and anything by Ray Stevens, etc. So, while he has been known to ‘mix-it-up’ to show his love for me in the past, this particular list is so far from his standard modus operandi it makes Option #1 highly UN-likely…even if he did have help from a co-worker.
2. While there have been times in the past 12 years that I have questioned/doubted/wondered his sincerity when he says “I love you” and have even wondered whether he was wanting/planning to get rid of me, I’ve never had any REAL reason to suspect that his leaving me was an actual possibility.
3. Seriously. Heavy Metal, Country, and R&B/Pop all on one radio station?!? Gimme a break!

So the MOST likely of the three? Obviously that would be Option # 2. Which just goes to show my psychosis. Granted, it is not helped by the contradictory allusions towards the end of the list… “I’ll be there for you”… “end of the road”…. Aaaahhhhh!!!! The confusion!!!!

Think I’ll go search up a good chicken recipe to make for dinner for the husband that may or may not be hurrying home to his seriously-screwed-up-in-the-head not-so-little wife tonight after possibly, but possibly not, having listened to every mushy song from every imaginable genre while working either in the Texas heat or in an air-conditioned guard shack all day. (Thus a new dilemma…hot chicken? or cold?)