Posted by: Kate | January 18, 2010

Still in There Somewhere

…which, incidentally,  is the working title of a book I’ve been toying with, over time.  Topic: the efforts of retaining a personality in the midst of marriage and pregnancy and motherhood.  Given the mood I’ve been in just lately, perhaps I should pull out my manuscript and add some of the more unpleasant/difficult/unsettling sorts of aspects of it all…

Because, I really am still in here somewhere, but I’m struggling.  There could be any number of reasons for it, but I’ve been thinking about it for a while and I think it centers down to the spondylitis and my reactions thereto.

I’m all the way off the opiates now.  Have been for over a week, withdrawal is all done, and now I’m just me, trying to deal with this.  Because, as much as I would like to put on a happy face and be reassuring and strong and optimistic… everything hurts.  Everything.  Every day.  I wake up and struggle to get out of bed, and I take the first dose of Neurontin, the medication prescribed to, in theory, replace the opiate.  An hour or two later, I get very woozy and dizzy and uncomfortable, and all I want to do is lie down – but if I do, I’m down for the count for a solid three hours, every time.  Which brings me to noon, and time to take the next dose.  An hour or two later, I’m woozy and dizzy and uncomfortable again, but having, by then, slept for something like 10 out of the past 14 hours, I’m able to stay awake through the afternoon.  Most days, I can get stuff done in the evenings, but “stuff” has become a relative term.  I can’t do nearly the number of chores and projects I typically would do; instead a good day is when I can both help the kids with homework and make dinner.  The dishes will have to wait, because by the time dinner is ready, I’m just in too much pain to form coherent thought. (Willem, by the way, has been amazing through it all, picking up all the extras without complaint.  I’m grateful… and have got to figure out a better way of dealing with this all, because he goes back to work tomorrow and cannot have me and the house waiting for him as a second job.)

So, in other words… the Neurontin isn’t working.  But I’m trying to stay on it as directed for a while, so that I can say, I gave it a good shot, now what?  I don’t know what other options are available to me whilst gestating, but I’m becoming increasingly interested in finding out.  I’ve got a growing list of phone calls to make, tomorrow and Tuesday, because I don’t know who will be open during MLK Day.

And, beyond that, I think I’m grieving the diagnosis, for the first time.  It was about a five-month process, from January to May 2009, for me to actually get that diagnosis in the first place, and in the middle of that I became completely overwhelmed by everything that was going wrong: lost job, pain, infertility, kid with behavior/attention issues… it was just too much, so I got on Zoloft and that smoothed everything over enough that I considered it good enough.  It all just kind of lumped together into one big pile of Bad, and I never really dealt with any of it, individually.

Then by the time I was off the Zoloft, it was a series of good things all at once, and I rode the high of that for quite a while.  It’s only now, that the novelty of the move and the pregnancy have worn off a bit, and the sting of the job loss has faded in the face of new life plans, and the only continuing, long-term issues are my pain and the kid with behavior issues, that I’m able to really notice and focus on those two things.  The kid also happens to be really ramping up, at the moment, because she’s helpful that way, so we’re making some changes and dealing with that – a whole other post, someday – and I’m off the meds and realizing, “Crap.  Turns out that wasn’t just a lark… I actually need those.  To be able to function.  Because I’m not, now.”

I suppose, in some sense, this awareness and grief is healthy… acknowledging a reality I hadn’t fully faced before.  Because it sucks to be 32 and dealing with a lifelong diagnosis.  It sucks to be considering things like handicapped parking tags and disability income… they’re a ways off, still, I think, but not as far off as they should be.  It sucks to know that this is never, ever going to go away.  I can get back on medication to control it, but no one can tell me how long that will help and at what point we’ll need to start “investigating other options,” whatever those are.  It does suck, and it’s important to take the time to accept and absorb that.

I was feeling particularly down about it tonight, because I felt jittery and wanted to deal with several different projects, but I was in too much pain to actually get anything done.  So, I thought, I’ll take a hot bath, instead.  Not too hot, you Pregnancy Police out there, just warm enough to relax my muscles and let me float a while.  Hah.  Instead, I couldn’t get enough hot water to fill the tub, and then when I decided that lukewarm would do, I couldn’t get my whole self in; I could hokey-pokey different areas into the water, but my belly and other bits are just too pregnancy-enlarged to be in the water at the same time as the rest of me.  So my back would be lukewarm, and my belly would be freezing.

I couldn’t decide whether to laugh or cry.  So I did a little of both, and crawled out again.  Played some mindless computer games to try and take my mind off various things I can’t do anything about right now, and now it’s late enough that I can try to sleep… which is a whole other challenge.

So… yeah.  I’m still in here somewhere, but it’s hard to get to the normally unshakeable, steady, somewhat upbeat, calm Kate right now.  The jittery, unhappy, almost-teary version is running the controls, at the moment.  Leave a message, and I’ll get back to you when I remember how to be me again.

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Responses

  1. I am so sorry. I’m watching my husband go through chronic pain issues, and I can’t imagine adding pregnancy, especially end-of-pregnancy, which is a whole other issue, into the mix.

    I wish I had more comforting words other than hang in there and I’m thinking of you.

  2. First of all, I am SO GLAD you posted! I was about to try to figure out how to email you because I have been hoping and praying that you were okay.

    Neurontin is icky, IMO, but maybe you’ll be one of the lucky ones who will adjust to it enough to get some relief until baby gets here.

    My cousin has psoriatic arthritis in his spine and has a implanted morphine pump that delivers pain relief directly to where he needs it. This has been literally a life-changing thing for him. He is able to work and go through life almost normally when before he was living in a fog of pain meds and only getting marginal relief. I thought I’d mention that, just in case it might be something your docs would consider for long-term pain relief in the future.

    Hang in there, and please do keep blogging as you’re able, even if it’s just to vent. We care and want to know how you’re doing!

  3. I’m keeping you in my thoughts Kate. Do you have a public pool nearby where you can go and float around for a while? We did this last week and it totally helps with the beached whale feeling. Not to mention that they’ll have a hottub. Ignore the pregnancy police-my midwife says if you’re not feeling overheated, the baby isn’t either.

  4. You’re right, that does suck! I hope that either the current drug begins to work better, or you get a fabulous new one soon!
    We have 1 1/2 bathrooms, but no bath – which we plan to remedy when I finally (hopefully) get knocked up.
    What is MLK day?

  5. It is hard. I too was in a great deal of pain during my pregnancy, with severe pubic symphisis dysfunction and continued nausea and vomiting. Could barely walk through the grocery store, nevermind doing the laundry or lifting my two year old. I think for me the depression got worse because of the pain and not being able to take care of my family, and wondering how on earth I was going to take care of this new person. My unsolicited advice is not to beat yourself up too much for feeling depressed, just let it be. It’s a normal response to a difficult situation. Just continue to be kind and gentle with yourself, and keep your eye on the prize, ur um, I mean baby.

  6. Okay. Even though you are off opiates for a week, it is still affecting your pain receptors and your mental perceptions. Give yourself a break sweetie. Chronic pain is one of the worst and hardest ways to live. My mother lived with chronic pain for 30 years with RA, I feel so blessed not to have that.

    Grieving a dx that will affect the rest of your life is normal and again give yourself some time. I wish I was rich because I’d send you to the Four Seasons Boston to a room with a jacuzzi, endless hot water, room service and some time with no responsibilities.

    Maybe you’re reacting to all the massive stressors you’ve been through in the past year~Remember your Selye and how life changes such as moving, pregnancy, chronic pain, etc do catch up with you.

    I bet you’d have a fairly high score on the life stress test. I believe you are a strong woman Kate. One of the strongest I know. Once you put your mind to slowly adapting to your ever changing life (of the past year or two) you will figure out the best way to cope and conquer.

    I’m not talking tomorrow, next week, or even 3 months from now. You know it’s a process and I know you can handle it.

    I’d love to fly in and be your nurse, child care, cook, house cleaner, and whatever else would help. I’m dying to put my skills to work.

    My money is on you~~

    Love, Janice

  7. All I can do is sympathize a bit … I know what it’s like to hurt EVERYWHERE (that’s exactly the way I describe my lupus flareup last year). It’s terrible … I couldn’t even sleep well, because moving in the bed hurt so badly I’d wake up. I truly hope the medicine begins working soon. I don’t remember how you feel about inductions, but maybe that’s an option as your due date gets closer? Maggie was induced at 36 wks because of the lupus, and she was healthy and hearty! 🙂

    Big hugs. I wish there were more I could do to help.


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