Archive for the 'depression' Category

My Matthew and Me

I live with an amazing little man named Matthew. He happens to be my son. He also happens to be an extremely complex little guy. He wouldn’t like me calling him ‘little’, by the way. The thing is, though, he IS little. Compared to this great, big, scary world we live in he is tiny. Even compared to other boys his age he is small (physically). He will always be my little boy, my little man.

There’s a specialness to the relationship between a boy and his mother. I really believe that. In many ways, I think my relationship with Matthew is even *more* unique because of his challenges. Oh he certainly has no shortage of those! He’s only 12, just a baby in the scheme of things, and yet he has a list of medical issues longer than his name. He takes many pills every day, though thankfully not as many as he was taking a year ago! He knows how to set up and use a nebulizer, how reconstitute injectable meds and prepare a subcutaneous injection, he knows how to use inhalers of various kinds, and how to use the emergency injection device that could save his life if he comes into contact with almonds or peanuts. He knows first-hand what a Jarisch-Herxheimer reaction is (and hates them, of course). He is very familiar with the deep, dark depths of despair, and no that is not an exaggeration unfortunely. He doesn’t need to read Jekyll and Hyde… he lives it daily.

He rides a major roller coaster of emotions and energy, with sometimes dozens of highs and lows both in a single day. His bipolar disorder alone would cause this, but to add to the complexity, so would his systemic Lyme disease and bartonella infections. He starts each day with a handful of pills and an inhaler. He ends each day with another handful of pills, an inhaler, a nasal spray, and an injection. Often he spends the time in between using the nebulizer every couple of hours.

This roller coater of emotions and energy levels combined with the difficulties breathing, the hayfever symptoms, and often physical aches and pains all adds up to one very troubled little boy. My heart aches for him over all the struggles he has in his life, knowing there will be even more in the years ahead. I only wish I knew more how to help him. I know he feels all alone because he tells me that no one knows what it’s like to have all these problems. I really wish he could meet a strong Christian boy or man that has dealt with bipolar and maybe some other medical issues as well that he could talk to. Mom’s ok, but sometimes a little guy like mine needs something more.

I don’t know but what his extremely high intelligence makes things even worse for him. He understands so much more intellectually than most kids his age. He’s also got a strong independant streak in him that if controlled and funneled correctly could make him a very great leader. Especially since he is also full of strong compassion for others. He just feels and does EVERYTHING so much more intensely than most everyone I know. I guess that’s to be expected with bipolar disorder, but goodness! I don’t know how to help him control and direct those strong passionate feelings in constructive ways. I really think his heart just tears in two sometimes thinking about others lost soul’s, and then other times it seems like his heart is just exploding with anger at the world and everyone in it.

You would think that being bipolar myself I’d be able to help him more, but that’s just not the case. I *feel* for him. I *understand* him. I *think* the way he thinks (really, it’s uncanny how alike we are), but for the life of me I don’t know how to teach him to DEAL with this disorder. I know for myself I pretty much just ‘go with the flow’ and that’s ok for me. That works because I don’t get the super intense rage and anger nearly as often as he does. For me, my emotions/moods are *almost* ‘normal’ or ‘stable’ the last couple of years at least because of my being able to decrease drastically my bacterial load (which was only aggravating the mood disorder) and also taking an antidepressant.

For a lot of people with bipolar an antidepressant alone is a big BAD idea, as it throws their moods even more to the ‘high’ side. On the high side it isn’t all peaches and cream and rose-tinted glasses. Not even close. Being too ‘high’ can bring the major rage problems, extreme insomnia, complete lack of impulse control, and sometimes even a loss of a sense of reality. Every person with bipolar is different, of course, and so the ‘high’ look different for every person. For Matthew, he has all the above along with super irritability and a super-inflated sense of self (he’s the best _____, the most _____, etc). For me, my highs for the most part bring increased ‘projects’. I tend to get more done when I’m in a high period. I have more energy, I am more excited about things, I get antsy to start new projects, and so forth. Even my highs aren’t all good, though. I also tend to not be able to sleep (extreme! insomnia) and I also tend to start more projects than I can possibly finish or even juggle! I also tend to spend more $$ than I should. I take on more responsibilities than I should, I make more promises to more people than I should. Put simply I overextend myself in nearly every way possible. When I was at my sickest physically with the Lyme disease, this would mean I’d also make myself even more sick when in a high period, because I’d ‘overdo’ it and my body would need several days to recover. My highs tend to last for several days at a time. Matthew’s tend to last anywhere from a few minutes to a few hours.

For me, *my* bipolar disorder has more distressing (in terms of the effects being a *problem* rather than a good thing) lows. When I’m in a low period (and these used to last for weeks or months at a time) I’d have no energy, no interest in anything. I get super paranoid about everything, and I feel completely worthless and horribly guilty… about everything. I feel guilty doing anything for myself, I feel guilty for not doing more for others, I feel guilty for feeling guilty! I’ve been down so deep I literally hoped I would die and tried to passively commit suicide many times. Thankfully, for *me*, taking an antidepressant by itself has not thrown my highs into overdrive. Instead it has limited (by a LOT) the lows. Not only the depth of the lows, but also the frequency, and the length of them. Nowadays I’ll feel blue or a little down on myself for a few days maybe, but I haven’t hit rock bottom since starting the meds, nor do these lows last anywhere as long as they used to.

For Matthew, he was put on an antidepressant as well, and it *did* increase the highs… or at least the problematic symptoms of them. Or maybe it didn’t actually increase them, but it let them be noticed more, as the lows were better. He has ADHD on top of everything else, and so the lack of impulse control and ability to pay attention to his school work meant we added a med for ADHD. The impulse control has definitely been helped, but it’s not perfect by any means. He’s currently off the antidepressant and we’ve increased his bipolar meds, but he’s still not stable. Plus the increased dosage has caused another problem… extreme sleepiness.

The poor kid can’t seem to win for losing! I love both my kids so very much, but there is a very distinct difference in parenting them. I know all kids are different and therefore parenting is different for every kid. I get that, I do. But my goodness parenting these two is even more extreme than night and day! Meagan is a pretty easy kid to parent, even with her discipline difficulties and she does have some as all kids do. Matthew on the other hand… NO parenting technique in terms of discipline seems to work with him. We’ve tried everything we know to try and the kid still seems to be floundering in the giant sea of life. It’s like he’s never been able to even learn to tread water, let alone float, or swim. Meagan might tire out sometimes, or get lazy with her swimming or whatever, but all in all she keeps her head above water, and is at least heading in the right general direction.

I just pray Matthew will keep trying to hang on to whatever life raft he can reach and keep trying to figure out the whole swimming/floating/treading water thing. Sometimes he seems so discouraged and tired of trying hang on, that I worry he’s going to just let go one of these days and sink.

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. =(

I wish it were one thing at a time!

Well it seems the only things I think of to write about when I am able to write are the kids’ behaviors. Oh sure, at night when I’m lying in bed waiting to fall asleep (sometimes for hours!), I think of all kinds of good blog material. Thought-provoking, funny, inspiring, informative, just all kinds of goodies. Trouble is… I’m in bed and the computer is not.

I have been thinking a lot about the kids and their behaviors and emotions the last few weeks because that is the thing we’re currently “working on”. This year has been chock-full of new realizations and discoveries. Not the least of which is that, yes, I truly do have two special needs kids.

Actually this is only just beginning to sink in. I mean, I’ve known for years and years that they each have a handful of medical conditions and various learning differences, but I’ve never thought of them as being “special needs”.

Truth is, though, they are. They both have needs that the majority of kids do NOT have, and so that makes them “special”. Of course, my kids are both pretty special period, but you know what I mean.

I guess you could say I’ve been living in a bubble the last few years. Perhaps the undiagnosed medical/mental/emotional problems *I* had were part of it, but even so the isolation was self-inflicted. I can’t really blame anyone else for it but myself is what I mean.

The isolation from the rest of the world that *I* had (not the kids, they’ve always been ‘socialized’ plenty, *I* just avoided going anywhere or getting involved in anything) kept me from realizing that my kids truly were ‘different’. Sometimes I would forget that not all kids take 4 or 5 prescription meds a day, or that not all girls have to take nightly injections, or that not all kids have to stay far away from all nuts and metal.

To further complicate the matters, the behavior and emotional problems my kids had/have were not unfamiliar to me, so I didn’t recognize them as being ‘odd’. Many of their problems were quite old hat for myself and my family, actually. They did not ‘stick out’ when compared to my younger brothers or myself at comparable ages, so it was not immediately obvious to me or my mother (the only other mom I really had any contact with) that there was something WRONG.

To be sure, I did catch that Meagan had auditory processing and expressive language difficulties early on, because that WAS different. In reading up on those things, I stumbled onto ADHD and read up a bit on that and recognized Meagan in that, as well. Truth be told I recognized myself, too. I remember one book in particular I read that was written by a psychologist or pyschiatrist who had ADHD himself in which he described the way his mind worked…how he thought about multiple things at once and there was never ‘downtime’, etc, that really made me suspect ADHD in myself. It was seriously like this guy had climbed inside my head and written down what he saw. Eerie.

I didn’t really DO anything about the new knowledge, though, outside of trying to manage stuff on my own. Just continued to hide away in the house. Partly because I didn’t know what to do about it, and partly because when I had tried to get Meagan help for the ADD, I ran into brick walls left and right. I figured since we’d been effectively shut down, that was the end of that and so I quit trying. I gave up advocating for the kids’ health at all, really. I adapted my teaching techniques, curriculum, and schedule to fit their needs as best I could and went on.

I still took them to the doc if they were sick, of course, but I absolutely stuck to that. I quit bringing up ‘concerns’ or questions. If their lungs got bad, or their toenail ingrown, I took them in, otherwise I just tried to deal with whatever on my own.

I kept up the endocrinologist appointments, too, for the routine checks of height and bloodwork to manage Meagan’s pituitary dwarfism (growth hormone deficiency), but gave up trying to find a good allergist, audiologist (for auditory processing issues), or neurologist and/or psychologist (for ADD). I did not pursue any of the therapies I thought the kids would benefit from (speech, occupational, physical, auditory re-training). The pediatrician we had was not the least interested in anything outside of the standard runny nose issues and so I quit asking her for anything more either.

So where am I going with all this… everywhere. =) Our new pediatrician is very interested in helping the kids with ANYTHING they might need help with, and I’m beginning to advocate for their health again above and beyond the basic “they have a respiratory infection” kind of way. It’s going to take time, though, since we kinda have a backlog of issues to sort through and deal with.

Some things have been handled or managed relatively well for quite awhile – like both kids’ asthma and enviromental and other allergies, and Meagan’s GHD. Other things I’ve know about but nothing has been done about it.

There’s Meagan’s auditory processing, expressive language, and ADD issues which I’ve had on the backburner for years. There’s Matthew’s small stature (is it a hormone issue like his sister’s??) and his suspected hypotonia (low muscle tone) that has also been in the back of my head for years. Then there’s his extreme behavior problems which have been here for years but I did not realize there was potentially HELP for it.

This year, we’ve added a bunch more. Not that the kids have changed that much in the last year, it’s just that I’ve become more aware that different aspects of their behavior, emotions, and health are NOT normal, after all. That realization has been building for a couple of years as I meet more moms and kids and really started paying attention to them.

So, in the last year I’ve recognized that the kids have a lot more issues that need dealing with than I was aware of all these years. They are not NEW issues, mind you… I just have a new awareness that they have a name and potential for being helped, and in some cases just new awareness that they are not normal.

These would be things like depression in both kids, ADHD in Matthew, wheat and soy allergies for Matthew, the Lyme Disease and other tick-borne infections in both kids, anxiety in Matthew, and nausea and mild anxiety in Meagan (these two are new symptoms this year).

There are a lot of things we need to work on getting taken care of or managed. Some things are already under control, others are on the way, and still others we haven’t even started. It’s the behaviors and emotions that are currently at the top of the list.

One thing at a time, right? =) Except it doesn’t seem to be working out that way.

The one thing for Matthew is actually a two-fer because they are equally urgent. That would be his depression which manifests itself with extreme mood swings, anger, aggression, rage, and frustration… and his ADHD which is much more evident and problematic when the depression is under control.

The one thing for Meagan is her ADD, at her request, but her depression is really causing problems and I’m not sure but what we might have made the wrong choice as to which to address first.

She started Concerta a couple of weeks ago, but when asked if it is helping her concentrate any better at school, she replies “maybe a little” with a grimace and a shrug. I don’t see any improvement at all, myself, but then I don’t see her during the school day when the meds should be at their peak.

At the same time, it’s been more and more evident (because I know what to look for and pay attention to now) in the last couple of weeks that she is, indeed, very chronically depressed. There have been several days when she’s been very emotional, crying over the simplest little things. She’s been just generally sad, blue, and down-in-the-dumps a lot, of course, but there are other things too that I never recognized as being depression before. Things like her repeated ‘episodes’ of “I hate my life. Nobody loves me. I suck at everything. I wish I was never born. I never finish anything.” kind of statements, as well as her frustration with herself (biting her hands, or hitting her head, or squeezing her neck, etc). She’s also often very blah. By that I mean there are lots of times when she is apathetic about everything in general…. emotionless almost.

I do know she is almost 11yo and so you might think that the moodiness and crying is just a little bit of puberty stuff. Early PMS, if you will. Problem is… we have been medically SUPPRESSING puberty for a year now. So it’s NOT puberty.

She has a follow-up for the ADD with the ped Mon, so we’ll see what she thinks then.

With Matthew, it’s even more complicated. He is on anti-depressants, and they have been WONDERFUL for him. All the frustration, anger, aggression, etc was GONE completely. He was HAPPY and obedient and cheerful and pleasant to be around (I’m sad to say that truthfully he has been a VERY hard kid to want to be around for a couple of years… ), and polite to boot. Simply amazing the difference it’s made… He was having fun and enjoying life (for more than a few minutes at a time) again. Until…

Week before last he had a day or two of mild (very!) behavior problems. He was getting upset and angry over stupid stuff again, but it wasn’t a major temper fit like in the past. The first day he told me that his temper control was flashing on and off. It got worse and worse, and by the end of the week it was as if he’d never had the anti-depressants at all. Then, just as sudden it went away and he was back to his new normal this past week. Monday through Thursday, that is. Yesterday -Friday- he was back to the old normal, but with a twist. Every now and then throughout the day, he would get calmed down and be the new normal Matt again for a few minutes. Today he’s doing ok, but not great like he had been.

So this is a problem, of course. I need to talk to the dr and figure out what the deal is. Is the dose too low? Is this particular med no longer going to work for him? Was the mood switch a reaction to switching his antibiotics from one that penetrates the blood brain barrier pretty well to one that doesn’t penetrate as well? Was this even ABnormal? (I have not totally figured out yet what is and is not normal.)

Then there’s the ADHD issue. When the anti-depressants are working and Matt is the ‘new’ Matt, the ADHD is a huge problem… at least at home. It hasn’t interefered with his schoolwork yet, which is why the ped did not put him on meds for it, but it’s becoming more and more troublesome at home.

This last week between Mon and Thurs when he was feeling good/happy, the ADHD was getting him into trouble all the time. The depression symptoms were keeping him in trouble before because of the yelling, screaming, throwing, hitting, slamming, backtalking, rebelling, running off, etc. The ADHD symptoms are getting him into more mischievous kinds of trouble, but still just as potentially dangerous (and maybe in some ways MORE).

In four days he: spray painted and then tore apart a table in the front yard, went dumpster diving in the parking lot behind our house, strung a flourescent light bulb (from the dumpster) between two trees, smashed a bunch of Christmas bulb ornaments all over the ‘floor’ of their ‘clubhouse’ (between the now ‘lit’ trees), took a walk to Braums without getting permission to leave the property, climbed up on the roof several times, spray painted and played with a steak knife pulled from the dumpster, poured red glitter all over EVERYTHING inside and out (another dumpster treasure), and spent about 45min going berserk over making “spider webs” by clapping his glue-covered hands together.

Yes, a lot of these things happened outside, so the first instinct is to say ground him to the inside or don’t let him out unless I go with him and watch him 100% of the time. Thing is, he’s almost 10. The neighborhood kids are all between 9 and 12. They all play together in the neighborhood, visiting each other’s houses and yards. It’s not a big neighborhood, maybe 5 houses long on either side. The kids don’t (typically) leave this small area. They all know the boundaries, and they all have (so far) been really good about staying in them and staying out of trouble without moms breathing down their necks. They aren’t LITTLE kids anymore, ya know?

If he were 4, then yes keeping him inside or going out with him and staying right at his side at all times would work. But at almost 10? Not so much. He is so small compared to the rest of them he already feels like the baby of the bunch. To have his mommy following him around would make things a million times worse.

What gets me is that while the ADHD isn’t NEW, it’s newly WORSE. His doc said that was to be expected, that the depression being treated allowed the ADHD to come to the surface more. I’m having to guess that the anxiety and fear he USED to have was keeping the lack of impulse control (mostly) in check, because he never would have played with a knife before. He would have brought it home to me (very carefully) and ranted and raved about how stupid people were for throwing it away where little kids could find it and get hurt. He would have (and has) done things like spray painting tables, climbing the roof, and scattering glitter everywhere… but in the past it would have been because he was angry about something or someone. It was almost predictable… if he was having a fit we knew to watch out for stuff like that. If he wasn’t actively throwing a fit, he didn’t do things like that. Now he’s doing these kinds of things just because… whenever.

The ADHD symptoms might not be interfering with his schoolwork, but they are definitely making him do things that are potentially dangerous (taking off without telling me where he’s going, climbing the roof, playing with knives)… and that’s a problem. I don’t know whether we need to try meds or if we just need to crack down even harder on the discipline or what. Like I said, I’m having to relearn ‘normal’. A year ago meds would never have been in question, because I was totally unaware that his problems were anything more than just bad parenting on my part or pure willfullness on his part. I didn’t know it COULD be anything else. Now that I know he has neuro-borreliosis, depression, and ADHD? I’m having to re-evaluate everything in terms of what is normal and does this need medication or something else?

Once we get these most pressing things worked out, then I’ll be able to move some of the other issues to the top of the list… hopefully ONE thing at a time.

In the meantime, I guess I need to brush up on my juggling skills. It’s a good thing my Lyme treatment is going so well. I’m ABLE to think again, and I’m gaining more energy and feeling better all the time, and that makes it not simply easier to juggle these things, but POSSIBLE again.

One thing is for sure, life is never boring around here!


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