Wednesday, July 22, 2009

How Easily the Scales Tip

The scale tips so easily this week.

So I exit my upstairs home office and go downstairs, swing by the wife's home office on my way to the basement to put the finishing touches on a box being shipped to Asia this afternoon and to take some photos of a piece we're working on. She gives me The Report.

This is when she tells me what she has learned, via telephone, about how Bennett's day is going at his grandparents house, where he stays all day since we had to pull him from Day Care.

The Report today is that Bennett is having a terrible day. He is, for some reason, crying a lot. Tears down the face crying. Needs constant comforting, something is clearly wrong. They aren't sure why. For the first time in the entire history of his disorder...he started crying during a pretty monstrous seizure set that happened late in the morning.

Face got hot, ears got hot. Started to feel dizzy, couldn't breathe. Heart beating itself out of my chest. Eyes darting. Knees buckling. Trapped. Felt like I was about to die. Well...poop. The physical manifestations of my raging anxiety beat me right at that moment. Sat down on the floor, asked Jen to take my blood pressure. 148 over 98. This on my new full dose of BP meds, which have taken me back down to a decent range, when I am not having the attacks. In fact last night I was actually LOW for me. In the upper 70's, low 80's.

So that's it. From here on out the rest of the day has been hard. Damn hard. I took my special pills way earlier than I normally allow myself to stop the attack, but now I have a case of the grogs.

This sucks BALLS man. It really does. It's bad enough to have a sick kid, but it's TOTAL horseshit to have a condition yourself that physically turns you into a walking liability at any given moment. I'm PISSED at that. Always have been.

Oh well, looks like I need to find a Happy Nugget right now. Hmmm...lemme see.

Nope. Got nuthin'.

Maybe later.


  1. And maybe not though,and that's okay.Days like this are often hard to recoup.So sorry for you and for sweet Bennett.Pissed is okay too.Expected and okay.

  2. Shitty day here too.....I was reading your post while nursing Maddie through what turned out to be a 17 min cluster. Then as soon as it was over and she was resting comfortably, we were interrupted by the signature-required Vigabatrin delivery at the door. Thank God we are almost weaned off this drug that never did anything for her. Some days just least as IS parents.

    I'm sorry Bennett had such a bad day. Hoping things calm down so you can get on with your trip without any additional stresses. As I've said, we are with you in spirit. Praying it goes well.

  3. Hi. Just wandered over here--I don't think I've ever been here before. My son Charlie has CP and had IS. I just read Bennett's entire story and just wanted to tell you what a great job you did of explaining your journey.

  4. Heather:
    Yeah, still no Happy Nuggets today. Brutal seizures today. BRUTAL. I have never seen them like this.

    That sucks. I don't think things will calm down for us until we get there. Maybe its good that he is having the worst seizures I have ever seen as we get set to get into along hospital stay.

    Welcome. Thanks for stopping by. And thanks very much for the compliment. How old is your son?

  5. I'm sorry, hon. Although that feels so hollow even saying. Probably should just delete it. But I am sorry.

    You have A LOT on the line this week. And your body knows it.

    And I'm just so sorry...


  6. Hey...It is SO scary when they CRY with a seizure or cluster...It has only happened to Colby twice....And it scared me to death...It was bad enough when he would come out of it and it seemed like he didn't know he had had one, even if he was groggy...At least he wasn't upset...But those two times he DID cry? Oh my God...I broke....and I had to grab a Lorazepam ...

    Like Danielle, there are really no words except I am so sorry...Could he be getting an infection? Like ear or sinus? I don't know...I wish it could be that simple...

    This may sound bizarre, but maybe he is MEANT to be worse right now so that they will be able to gain the OPTIMAL information this weekend....Maybe?????

    I just want to cry for y'all...

    You WILL get through this....


  7. I'm horrendously unqualified to comment here. Horrendously.

    But having had a bit of recent terrifying episodes of panic/anxiety, I've got to reiterate this what my GP told me: Your heart can go unbelievably fast without any damage or danger. Unbelieveably. When I went into emergency because of a panic attack that I thought was a heart attack, they measured me at 170 and were totally unconcerned. The important thing is to realize that you can make the conscious choice to slow your heart down (deep breathing), and as horrendous and creepy as panic attacks are, they do pass and they pass quicker if you make the conscious decision to fight it. As my mum (a veteran of panic attacks) put it: get annoyed, don't get scared. For me I find lying flat over the ground and putting a cold/wet cloth over my forehead/upper chest really helps.

    Either Bennett will have surgery, or you will find a medication that will work. The horrible thing is that both take time and the latter is just trial and error until they find whats right. Good luck, ken.

  8. Sending you all the positive energy that I have. It will get stressful but you are going to a great hospital and the doctor committed to treating Bennett with a sense of urgency. And that is important. And know that I am here with you. Whatever they tell you, it will knock the wind out of you. Even if they tell you they can remove it by magic wand tomorrow it will knock the wind out of you. When they set the date for the surgery that I wanted for Emma I hung up the phone and almost vomited. I went though what I can only describe as a week long out of body experience after that. It's surreal. Every diagnosis. Every new plan. Every medical proffessional who is nicer than we can imagine. Everyone of them steals a part of our energy (and sanity) because it is that much more to take in. So you might feel like a basket case. It's OK we all do because we prepared for cute clothes and Tonka trucks but life took us in a new direction the minute we read the words devastating, catastrophic, severe, epilepsy...… it's impossible to come to terms with that while you are still living it and it is so raw. So hang in there because we know you can survive this weekend because you have already survived so much.

    If you can manage to fit an exersaucer in the car, bring it. It has been our savior through long EEGs. You can push the bed over a little and he will still be on camera.

  9. Yep, I can vouch for the "TOTAL horseshit to have a condition yourself that physically turns you into a walking liability at any given moment".

    Some days I can't even drive.

  10. Ken, wow...I feel bad for you and especially for Bennett. As Cyndi stated, maybe he is having these bad ones now for a reason.

    As for your heart racing, coming from someone who has a heart condition where her heart races at sporadic moments (we are talking 250 bpm) follow the advice my doctor gave me. Inhale and bear down like you have to take a crap. Hold it as long as you can and then quickly inhale. By doing this, you are effectivly "re-setting" your heart. OR, rub your carotid artery in your neck. For some reason, this slows down the heart also.

    I'm not sure if it will work for you because your heart racing is due to the anxiety attacks, but it's worth a shot.

  11. To the rest of you all who posted twixt my responses and now:

    Thank you all for taking the time to wish me well and Bennett too.

    I'm fried. Head hurts, stomach acid out the wazoo but I am surviving. We'll get THROUGH the weekend, just is what it is I suppose.

    There is something good, I'll do a quickie post about it.


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