Sunday, June 28, 2009

Stick a Fork in Me

Yeah...I'm done.

This morning, after another set of nearly 100 seizures I made a decision.

Right now, I am walking away from counting and maintaining an Excel file record of all the seizures. Talked it over with Jen, she said she was OK with it.

I've gotten to a point where I can't actually do it anymore. I am not certain it is really a benefit as no doctor has ever asked me for the records, and we can pretty much tell anyone who asks what his averages are per day and how the seizures manifest themselves. And I visually record the seizures every once in a while so we can physically see how they look.

Not sure if this is the right call for Bennett, whether I am doing him a dis-service or not. But when your overall mental health is in a state of distress on a daily basis, eventually you have to make some choices to keep from going more deeply into the abyss.

This is a decision for ME and ME alone.

Last week, I saw a doctor. Not for Bennett, for me. My thyroid medication had to be increased (I have a genetically inherited hypo-thyroid condition). I am continuing to take medication for ADHD and PTSD (I have anxiety attacks), two meds I had ceased taking for around 2-3 years but have had to go back to since this all started for Bennett in February. But the worst news from that visit is something I sort of knew was coming but was confirmed during this visit.

My blood pressure is out of control high. And so, my doctor has put me on blood pressure medication. This now means I am taking 4 medications a day, and the odds of a fifth medication being added soon are high. This would be for depression, which I have also been off of for 2-3 years. That looks like it is on the horizon.

Five medications? That's just not right. I am only 41 years old.

SO...time to make some decisions to attempt to reduce my overall stress levels. Time to start thinking a little more intensely about taking better care of myself. Now...let's not forget...I don't want this to totally be all about me being too hard on myself...I deserve major, MAJOR props for quitting smoking last November. I deserve even BIGGER props for not going back, WHATSOEVER, during all of this Bennett stuff.

But the 20 lbs I put on during the process is not a good thing, and I wasn't a lean mean fighting machine before that either.

Um...that ain't me, I just think the photo is a hoot.

But the weight is just one part of this unhealthy puzzle. Too much caffeine, too much artificial sweetener and other mis-understood ingredients in the things I consume. Not enough sleep. Too little exercise. Not enough things to nurture or relax my mind. Pushing rage deep down and not finding the proper place to release it.

I get the struggle with the depression/anxiety. Always had it, always will, it is a product of my early development. I actually accept it. It is what it is. If I have to take meds for that sometimes OK, I can live with that, because frankly that shit was way beyond my control. But some things I can certainly make more of an effort to control.

And high blood pressure? I can't accept that. Not as far as accepting it to the point where I consider medication the 'solution'. That's one of those things that I can certainly make more of an effort to control, and I must start attempting to reduce it...NOW.

And one way to do that is to chip away at some of the stress in my daily life, and one thing I can do immediately is to stop obsessing over the seizure count. So that's what I'm doing.

And oh yeah...all next week? No Bennett updates in the blog unless something wacky happens. Just gonna do some posts about other things.



  1. I just did the same thing. Once Maddie's clusters had gone away, I began counting the singles for the first time ever and it was so f-ing stressful. I had post-it notes with times notated on them all over the house which I would hope to have time to record in one place each day. It just got to be too much. And now that the clusters are back, I just keep track of what time the cluster happens, and how long it lasts in minutes. Counting each spasm just makes me angry and sad.

    But I think it is an excellent move for you. My hubby(you know he is a Marine) is in absolutely fabulous shape, runs daily, gym rat, etc. But ever since Maddie's leukemia diagnosis, his blood pressure has been high too. He has not had to start meds, yet. But that is one reason we are trying so hard to move and live with him again. The stress of being away from us, a crazy job, plus all of the insanity with Maddie's is just too much. I say anything you can do to relieve stress is worth it. You can't be a good parent if you aren't taking care of yourself too.

    And I agree, no one has ever taken the time to truly appreciate the intricacy with which I describe her seizures. And all is does is make me more sad. And I can't comfort her as well if I am busy counting each movement.

    Sorry this was such a shitty weekend after the hopeful days of finding a new doctor. It has to start to get better soon.

  2. Spider Blob?

    You're no good to Bennett or Carter, or Jennifer if you slide further down the health scale huh? I have discovered that 41 is still nice and young compared to what I anticipated.

    With you in spirit...we could work out together if you lived about 2000 miles closer!

  3. I think you will benefit tremendously by just being there rather than recording and counting. I'll miss hearing about Bennett but it might just help me shake off the IS obsession.

  4. Liz:
    Yeah you can get easily consumed by this shit. I'll probably jot down some notes if I need to, I'm just fed up with the Excel file and the individual counts. It's a fucking lot of seizures, that's what I'll tell anyone who asks. :)

    In a nice way of course.

    Sorry Brandon has the high blood pressure as well. That's unreal with as good a shape as he is in and as active as he is.

    It's cool. I expected a shitty weekend. But there were some bright spots. I swear I heard Bennett try to say 'delicious'...unless I am going crazy he repeated it when I said it. In his own unique way of course.

    Yeah we could do that. Hell I'd be in great shape if I just started walking to your house right now.

    I'll update in the message board and be around there too, and if anything wild happens I'll break in. Already have my Ben-free week of blogs written and loaded in. Monday we just have a little of my declaration of love for Steampunk, Tuesday a Head Trip back through my honeymoon, Wednesday some Star Wars art by a buddy of mine named Trevor, wacky stuff, Thursday a look at some of the new Kubricks I just bought and Friday a re-peat of an old Palisades bit about some zombie action figures we sculpted but never produced.

    Yeah, NONE of that is probably your cup of tea, but it is definitely different! :)

  5. Oh sweetie...I haven't really counted Trevy's seizures in a long time. Oh except during his last in-patient EEG...when my button finger got blistered...

    It's just too depressing...and really is 100 vs 200 a big deal? I find myself tracking more of his he happy? cranky? sleepy?

    And obviously I have enough intuition about it to know when we have a bad day or yesterday. have to take care of yourself too. And the rest of your family!

    Much love from RI...


  6. By the way, I'm also in the high blood pressure (and high triglycerides) club on account of IS. I've been 104 over 60 for years and then this diagnosis and it just shoots up.

    You're right the preview you have given is possibly not to my taste but my husband might enjoy it. He's the comic book, action figurine part of the marriage.

  7. Having recently jumped on the anti-anxiety meds bandwagon recently, alongside all my arthritis/anaemia meds: I feel your pain. Nowhere near comparable, I know, but I do see where your coming from. Keep in mind in regards to the spreadsheet thing, though, that if you aren't doing the right thing by yourself then you can't possibly be doing the right thing by your family. You seriously do have an obligation to put yourself first, because no one else can do that for you. I recently starting doing the gym thing and I found it burned off a hell of a lot of tension, alongside a few kilos/pounds as well. And I'll share the wisdom of the matriarch of my anxiety-plagued family: MEDITATE. I had no belief in that stuff at all until my mother made me promise to give it a proper go, and once I did the difference was huge. I slept better, my fuse was longer, I could bring myself back from the edge of panic way easier. Give it a shot. the only downside is that I found it took about a fortnight before I could do it really easily.

  8. Ok I totally understand where you're coming from. When we first got the diagnosis I was on the computer every time Daniel took a nap (within eye sight so I could see if he had a seizure) and I was researching and learning and writing questions to the neurologist..endlessly on there looking for SOME hope. Oh, and by the way....weight...SKYROCKET!! Oh and yes add those antidepressants and sleeping pills, anxiety attacks...bouts of crying...yeah still go through those, seems like its a vicious circle. THen I try to tell myself that I am no good to Daniel if I'm f*cked up mentally. So take care of yourself, get blood pressure and weight under control...and you'll be stronger for your son and your family. Its better to do it now, then 4 yrs later and you're the model of the spider blog (thats me by the way! LOL - well almost!)

  9. Hey I'm sorry to hear about the latest. I think you are doing the exact right thing to look out for yourself. You have to. You have to take care of Bennett's Dad (and Carter's too) in order to be the best you can be for them. And you need to do it for yourself. Also, you don't have to do it by yourself. I, along with the rest of your IS family, will be rooting for you every step of the way.


  10. There is no need to count everyday. I did it for a long time and it drove me absolutely nuts. It was constantly trying to remember to enter into excel or a notebook ALL DAY LONG. It sucks and it is VERY stressful. So I went from recording everyday to just one day a week to just when I felt like it (usually right before and during medication changes).

    I am so glad you are going to move that focus onto yourself. It is hard to do but it needs to be done.

  11. I can't tell you the difference in MY mental state after putting the seizure logs aside. I went from a complete nutcase, crying and agitated all day to a much more pleasant, relaxed mom (as pleasant and relaxed as one can be dealing with seizures).

    My mom convinced me that it was driving me insane. I felt the need to watch every single move he made. It was much easier to count when he was only having clusters. But, once those started to fade, I just couldn't keep up with the isolated drops. I stopped counting religiously when he was on vigabatrin. There were nonstop drops right and left. I was always in a state of panic. I think I even searched online for a "clicker"...something I could click to keep a tally and then record them later in the day. I could never keep up with my pen and paper. Anyway, I decided to just quit altogether. I just give an estimate when the epi asks. Which, after his VEEG, I realized how close I had been in accuracy.

    I do hope you continue to work on getting yourself to a healthy state (mentally and physically). It's so easy to forget about our health when we're so consumed by our kids'. I tell my husband that all the time. He's Type I diabetic and on daily insulin injections and three other meds for high cholesterol and such. He's only 25. He totally puts his health on the back burner sometimes...which could very well lead to me having to take care of him and Austin if he doesn't start taking it more seriously. There's no way I could handle this without him.

  12. Ken,
    not sure if you remember me. I'm Eric Resnick, We used to talk off and on back in the Palisades days and I did a big feature on you in Toy Shop Magazine. I'm Running an all new adventure now, Your should see the write up we did on you a couple months ago. Anyways, on the BP issue, I just saw this crazy thing called Zona that looked pretty cool. its a mechanical solution for BP issues. might be worth checking out.


  13. A great step.
    Good for you Ken!


  14. All of these folks have left you wonderful advice....I, too, have (and still do) document Colby's seizures...More because the time of day affects what Rx changes we make since we are continuing to adjust....I haven't ever done the Excel thing, though...And you know why...It's because I wouldn't know how to!!! If I COULD, I probably WOULD have....I am just that type of person...But I DO have YEARS of calendars in Colby's file....

    Also, NOT having I.S., as you will remember, Colby has only had one day (KNOCK ON WOOD) when the number went over around 75, and I quit counting that day....I just couldn't do it....I was a total wreck....I can't even IMAGINE watching the numbers and numbers that you parents do...Over and over....

    I, too, have recently tried to slack off on my obsessive focus on the disorder....It is tough to change, but it really does me no good....And it does Colby none either...I will keep trying on that one...After all these years, I am STILL a work in progress!!!

    As for the health issues, I have a few myself that I take meds for....Also, I DON'T get the exercise I need and I DON'T get the sleep I need....I always blame it on what I call "my situation"...I know that I am not fooling anyone OR myself...I COULD do better (at least with the exercise - when my back is not out! See? Another excuse!)....And, seeing that I am a decade older than you, I SHOULD be more serious about it...Maybe you younger parents will be a good influence on ME...

    Anyway, you do the best you can to take care of YOURSELF....And you WILL, I just know it....You love your little family WAY too much to let things get out of hand....I am your biggest cheerleader....And don't forget what I have already said....You and your Jen have ALREADY made an AMAZING adjustment to Bennett's diagnosis...It is an ongoing process learning to deal with it, I know....We ALL continue to learn how....But you are doing BEAUTIFULLY! A great testament to your inner strength....

    Let me know what I can do...


  15. Danielle:
    Already I feel like I made the right call...not worrying about the count is much easier to manage.

    I think health issues for us parents are all gonna be off the charts. Takes a toll this does, on all of us.

    I have often thought about meditation, I just don't know how and don't know WHERE. It's a madhouse here and finding alone time for that and learning it is a herculean thing.

    Thanks...yeah I definitely need to look after me too.

    I'll take that as a good sign. If a vet like you and some of the others have made the switch, I can too. I'm still keeping an eye on them, but no strict records.

    That sounds VERY familiar. I was getting nutty about it, and ANGRY if I did not get the counts exactly right. It was time to step away. I tried to find a ball/strike clicker type thing as well.

    Absolutely I remember you, long time no talk. Will look into that thing. You did a write-up on me? When?

    Thanks again!

    Well, considering how long you have been at this you are doing just fine I should say.

  16. Ken don't worry about not keeping count of the seizures, you (and Jen) better than anyone can explain all about them to a whoever.

    You don't need to know the exact daily number, that's just torture.

    I stopped smoking without any problem of difficulty, so if only by my experience I wouldn't give you any props for it. But I also do know that I was only a heavy smoker for about 3 years, and that's when I stopped. Also I see the battle several friend and family members go through to stop smoking, and I believe none of them have been able to do it so far. Reduce, yes, quit? No.

    I had a friend who saw her mother die of lung cancer because of her smoking habit, she saw what a horrible death is was and she still wasn't able to stop smoking so:


    You know me a little by now, and you know I've never been a healthy person, so I've been on medication, for this or that, all my life.

    I was pretty happy about that fact that I one constant (My nervous system medication) was down to 4 pills a day, and that was it, I wasn't taking medication to anything else.

    Well then the cancer came, and luckily went, it's totally been removed, and I don't need to do chemo or anything like that, I just need to have it check every 6 months.

    But (and there seems to be only a but), I am now taking 5 to 6 pill for my nervous system, and at least another 5 to 10 for my digestive system.

    So I'm 33 years old and I'm taking 10 t0 16 pills a day. I'm not saying I'm worse off, I'm just saying that in this day and age, unfortunately it's not uncommon for people to be on a few pills a day.

    As for your blood pressure, if you're nervous that bitch is gonna go up, no matter how many pills they tell you to take.

    I don't have blood pressure problems, my blood pressure is actually low, which wouldn't you know it, it's a bad thing for me! My average heart rate is our 95bpm, when it should be 75bpm at most, and even when I'm relaxing it can get to 140bpm with no help from me. Which made me stop going to the gym, because all physical exercise I make just makes my heart beat ever faster. The only medication that would work, would lower my blood pressure, considering it's already low, it's not advisable.

    But I also wouldn't want to take one more pill a day, same as I don't take my cholesterol pills, because I'm trying to lower it with what I eat, it's genetic, everyone in my family has high cholesterol.

    Some of my medication is for life, so I have to watch out, and take care of my liver, because if I am to live a good number of years and need to take care of it and my kidneys too.

    All this to say: You take a few pills a day. Do they help you? If they do don't worry about it, take them, and forget about it.

    You're not doing your sons a disservice by taking care of yourself. You can only play with Carter if you're healthy and in good spirits, and you can only take care of Bennett in the long and winding road ahead, if you keep yourself sane.


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