Monday, August 07, 2006

Being The Squeaky Wheel

Or, as I prefer to call it, being the advocate for my family's healthcare. Either way, it amounts to the same thing. Sit back and be polite, and you'll get shoved to the back of the line again and again and again. Start engaging in actions that are loud, slightly obnoxious, and repetitive, and you'll most likely get what you need.

I've mentioned before the problems Alex has had to deal with since having his lithium discontinued (in order to, you know, keep his thyroid gland from drying up like an old raisin and dying), and how upset I was, at the time, that not only was that mood-stabilizer not replaced with another one, but that he was left with only one mood-stabilizing medication even though he now has to take synthetic thyroid medication, which is known to be a mood-disrupter! I believe that my exact words to his doctor those many months ago were, "You don't think, since he's been doing so well on Depakote and lithium together, that the lithium should be replaced with something else? Like, maybe, Lamictal, which is supposed to work so well in conjunction with Depakote?"

But hey, what do I know? Just that my husband, despite trying his very hardest to make the best of the hand he's been dealt, has not been well--really WELL, since December. And that during these last few months, the ones with the stress of the buying of the house, and the temporary financing of the house, and the selling of the other house, and the loan payments on the TWO houses, and our child trying to kill us ever-so-slowly with The Torture Of A Thousand Tantrums, and my own impending surgery and its accompanying Very Real Fear of Accidental-Or-Not Colostomization and the you-will-never-have-any-more-babies grief and the OHMYGOSHHOWAREWEGOINGTOPAYFORTHEUPKEEPOFTHISGIANT-
HOUSEFORTHENEXT TWENTYYEARS worry, that he's been sinking. And that despite our repeated cries to our trusted healthcare professionals for lifelines, those lifelines have not been forthcoming, and the "earliest possible" appointment we could get was several weeks away. WEEKS. Stick with the drowning metaphor to make that last statement hit home. That's a long darn time to tread water.

Well, the good news is that, as of today, Mr. and Mrs. Nice Guy have left the building, and The Fed-Up Belligerents have taken their places and attended to Alex's medical needs. We made an end-run around the front-desk staff at the psychiatrist's office, by booking an appointment with one of the clinic therapists...who we had no intention of seeing. Then, while that therapist was on the phone, and I was in the midst of a fairly significant apoplectic FIT just from listening to the one side of the conversation I could hear, my husband, BLESS HIS EVER-LOVING HEART, said to Mr. Therapist, "Hold on, please. My wife would like to speak with you, and I think I'd really be remiss if I didn't let her," and HANDED ME THE PHONE. I love him for that.

Well, folks, that's where it just got...not ugly, but forceful . I didn't yell. I didn't call names. I didn't question anyone's heritage, and I repeatedly expressed sympathy for the spot that Mr. Therapist had now found himself in with me, but I was very clear about the reasons for my frustration, and my incredulity that you could offer a drowning man a therapy a WEEK. Not that a therapy appointment would even do him any good if it happened right that minute, but that's a moot point since he'd be long drowned by the time the scheduled appointment rolled around. I think it was quite clear that my intention was to stay on that phone until hell froze over OR we got some help, because Mr. Therapist put me on hold for a loooooong time, then finally came back and said, "Well, we got lucky. Dr. Prescription has had a cancellation today at 2:30."

Yeah, whatever. We'd only been on the "cancellation list" at this point for about 6 weeks already. Pull the other one. But no matter; at 2:30, we were there with bells on (and apropos of nothing, but for some reason there was a LOT of crazy representin' in that waiting room today), and while we had to wait nearly an hour for that "cancellation" slot to materialize, we got some desperately needed medical attention that has been a long time coming, AND we have a follow-up appointment 4 weeks from now to check on the progress of the new medication that's been added to Alex's "Bipolar Cocktail."

Oh, and the new medication? That happens to work very well in conjunction with Depakote? Are you seeing where this is going? Yeah--it's Lamictal. What a surprise! So now, we just have to watch out for the Lamictal Rash of Death, but barring that, I'm praying that my darling husband will be feeling MUCH better in just a few weeks. You have to titrate up to a therapeutic dose verrrrrry slowly, so it's not an instant fix, but the good news is that is doesn't have the side effects that Alex loathes about his other meds, such as slower metabolism and weight-gain. So everyone pray for my dear Alex, because even though I might briefly consider punching him in the neck occasionally when he is manic and obnoxious, I really do love him, and I want him to be well and happy more than anything in the world. And also? I can't get my own medical crap taken care of until we get his medical crap under control, so we gotta get this show on the road!

And then, hey, I'll have my funfun OPERATION, and we'll all just be right as rain over here at Chez Ninja! Who wants to party? NEXT MONTH, that is? Or maybe even in October, since that's when mine and Bella's birthdays are, anyway?


  1. You go girl! You're one tough chick momma! Everyone needs someone like you on their team!

  2. It's great that you can advocate for Alex, but it is sad that people who've dedicated their lives (at least ostensibly) to medicine can't make time to see someone who really needs their assistance. I'm glad they saw you, and I hope the Lamictal is all that you need it to be.

  3. yes, you come from a loooooooong line of "forceful" women. I think the trait has even been passed to my wife, though I have no idea how...if I ever find out who's responsible, they're gonna be in BIG trouble! I hope the new meds (along with the scientifically proven medicinal benefits of firing a potato 1000 feet) prove to be the right combination for Alex.

  4. Zach, I told her not to show you that extra slip of paper I snuck into the "advice basket" at your wedding.

  5. i am all freaked out about the lithium since alex has had his problem. maybe lamictal is right for me as well. man, i hate being crazy.

    i hope like the dickens this works for you guys. *hope* and is your surgery actually scheduled or wait and see? can't remember. i will blame that on being crazy too.

    much love from me to all of you.


  6. Lithium was fantastic for him, though...until it made his thyroid stop working. Apparently that doesn't happen often, so just keep your bloodwork current and watch for signs. I know people who have been taking the stuff for thirty years with no problem. Wish Alex could have been one of them.

  7. Glad you finally got someone to see him, and that they finally did what you knew they needed to do. When will people stop questioning your genius!?

  8. I LOVE the Fed Up Belligerents and all their wacky antics!

    I'll keep my fingers crossed for Alex!

  9. I have been meaning to post a comment since I started reading your blog after your interview from Blogher. I just wanted to hug you with this post. I really can't know all that you are going through but I can imagine how challenging it is. My experience with doctor's is similar; frequently getting them to REALLY HEAR YOU can be a serious challenge. I don't want to be a bitch but don't tempt me either! Not caring for my family properly is like sticking your finger in my will regret it!

    Sending many good wishes your way this morning and this week...

  10. And you guys didn't drop an anvil on these Dear Doctors? 'Cause this seems like a wonderful opportunity to use all of those life skills we learned growing up with Warner Bros. cartoons.

    You didn't push them off a cliff and listen for that satisfying *pffft* sound that Wille E used to make as he face planted? *tsk* You two must have a great deal of restraint and self control.

    What about Tater? He looks 'bout like something right out of Acme (he's even red). One potato up the kester would sort a doctor out in NO time.

    No? Oh well, you found your own way to get their attention, which is probably just as well. Hopefully the meds will work out. Otherwise...Potato. Kiester. Keep it in mind, it may come in handy.

    (And on a side note, can you believe that the word "kiester" is NOT in Microsoft Word's dictionary?! What is this world coming to?)

  11. I hope his new meds starting helping soon. You both are strong people to survie what you are going through and stick together. I am watching my youngest sister put her husband through some stuff right now and it blows my mind when she pulls her mental stuff. She won't even talk to someone about it.

    Hey, my birthday is in October also, we can have a big party!!

  12. Good for you!

    Lamictal made a huge difference for my bipolar spouse, so I'll cross my fingers for you.

  13. I've been on lamictal for 2.5 years and it's been my main medication. I've experienced no side effects that I am aware of (except a possible descrease in my vision, which could also just be age). I would absolutely freak if I had to stop it.

    Good luck with Alex!

  14. Mostly I'm in the learning seat when I read about this because it is so foreign to me. So different. So way far out from my realm of experiences. Therefore, I rarely comment.

    It occurred to me that what you could use is a "Hey, honey. I really care about you and am sorry you deal with this. Sorry that Alex deals with this." So there it is.

    I'm just so sorry.

  15. That wasn't pity. I just want it to go away for you.

  16. I agree with that. When ex had regularly scheduled appointments to see his psychiatrist (who wouldn't listen to him when he said he was doing poorly) he often had to wait an hour or more.

  17. I am just amazed by you (in a good way). Just thought I'd let you know that.

  18. If you wanna be amazed, check out Alex today. I don't think he's even read *this* post of mine, yet, but his is from the horse's mouth, so to speak, so carries more emotional weight.

  19. Belinda, this story is incredibly close to my heart. My own Cowboy is also bipolar and was actually hospitalized several times in ONE YEAR due, in part, to various members of the medical community ignoring our pleas for help. I also experienced various medical personell telling me, in effect, to butt out, I didn't know what I was talking about.. I was 'just the wife.'

    The climax of my story was a round of ECT after Cowboy nearly died.. because he didn't want to live anymore. Please stick to it. Please don't let them ignore you. That crash cost us nearly two years.

    I wrote about it a couple months ago on my blog, if you're interested:!91AA1DCBA39C409C!1048.entry

    Please don't stop talking, don't stop asking for help. You're on the right track, stick to it! Feel free to email if you need encouragement.

  20. I missed BlogHer, too... (teenagers and other things going on...)

    Your husband is lucky to have you and more than that, your attitude and constant support. Compassion and strength and committment are the three things needed and so many with bi-polar could do so well if they had a significant other/spouse that could manage the difficulties.

    Haven't been to your space in awhile and am sorry to hear you are still suffering -- tremendously, it looks like. Good luck!!!

    MotherPie Cheers and cross my fingers the heat wave will break. No fun.