Tuesday, May 28, 2013

Mixed Feelings

So, an update of my appointment with Dr. A as promised: apparently all the drugs (hormones, steroids, benzos) and physical therapy have worked exactly as they were supposed to. The muscle and tissue atrophy is totally healed, my pelvic floor muscles are no longer spasming uncontrollably, and the nerves in my hips and lower back have calmed down. Trigger points that had me jumping off the exam table six months ago are now pain-free. I've been having regular periods since last July, my weight is solid, my body fat percentage is healthy, and my hormone levels are back in the normal ranges. In conclusion: the treatment regimen worked. I'm better.

But. But but but. I'm still in pain. Exponentially less pain than before I first saw Dr. A back in December, but still enough to have a substantial effect on my everyday quality of life. Still enough to make me nervous about living alone, about starting my new job on Friday, and about starting graduate school in the fall.

Dr. A gave me a big long explanation about the nature of pain and why my subjective experience of the condition has not kept pace with the objective physiology. I won't even attempt to rehash it all (Dr. A is a highly intelligent, slightly manic, very fast-talking kind of guy) but the basic gist was that my brain hasn't realized that the underlying causes of the pain are gone. My nerve endings are still freaking out, my muscles still tense up and spasm, my brain keeps firing off pain signals, and the whole gang is still generally pretty skittish and upset.

My brain still thinks my body hurts; as a result, my body hurts.

So...the solution? Wait it out. As far as we can tell, I'm physically about 90% cured, and the pain should lessen with time. Again, he said the one thing I've needed so desperately to hear, and to believe: "You're going to be fine."

I don't know if anyone reading has ever experienced chronic pain, but it's a tricky thing. Whatever the initial physiological cause, the pain can eventually become a disease in and of itself. After a while, it evolves into a persistent, independent, self-perpetuating cycle. I guess the eighteen months since this all started were enough for the pain to become fully entrenched, and my body is still digging itself back out. In other words, as Dr. A put it: "The longer you're in pain, the longer you're in pain."

I left the appointment unsure of how to feel. Relieved, for sure, that my body seems to have bounced back beautifully. I am 22 years old after all; physical resilience should be a given. At the same time, though, I started feeling all the same old negativity: frustration, impatience, despair. I'm tired of hurting. I want it gone. I feel cheated—treatment worked, apparently; Dr. A did his thing, my physical therapist did her thing, and my pharmacist did his thing. The only one who hasn't seen any benefit is me.

But now, surprisingly, I'm okay. I've worked really really hard over the past few days to shape my understanding of Dr. A's prognosis into a positive thing. Yes, I'm still hurting, but things will get better. There's no reason to believe they won't. They've gotten better slooooowly over the past six months, and there's no reason to believe that won't continue. I am doing everything I can to keep myself as healthy as possible—hitting my calorie targets every single day no matter what, limiting exercise, maintaining my weight, having regular periods, taking all my meds and supplements religiously, and getting lots of sleep—and I am more motivated than ever to keep it that way.

The more I write, the more thoughts I'm having about pain, about anorexia, about sickness and health and recovery, about my appointment with Dr. P this morning, etc. etc. etc. but it's getting to be dinner time and my brain is getting fuzzy. Now that my bod is all used to getting food, like, regularly and sufficiently, it does not like being hungry!

Anyone else out there fighting this thing—pain, EDs, depression, whatever—God bless and hang in there. It gets better.


  1. Mixed feelings indeed. I'm SO happy to hear that your health benchmarks are all looking good. So NOT happy to hear that you're still in so much pain. I have a family member that had a leg amputation a few years ago, and the phantom pain was VERY real and very devastating for a while (although it did go away completely eventually). Nerves can be surprisingly slow to get with the program sometime...it sounds like your doctor knows his stuff, though, and I really hope that the pain starts to fade steadily and as quickly as possible. Hang in there, the last six months are proof that your mind and body are capable of overcoming huge challenges.

    Sorry to have been away for a while, miss you and have been thinking about you the whole time.

    1. I've heard similar things about phantom pain—that it's devastating and baffling (as if losing a limb weren't bad enough). Great to hear that your relative is feeling better, and that bizarre inexplicable pain can disappear with time. My doctor is indeed a gem and has helped me tremendously—after all the BAD doctors I've dealt with over the past couple years, it's a real testament to his competence that I'm trusting him and willing to wait it out! Thanks Cammy, so glad to have you back!

  2. Wow I am awed by your determination, resilience, optimism and faith. Reading things like this give me hope and inspiration. You have physical problems to deal with as well as the sticky road of recovery and you are still keeping your chin up.
    Well done, girl
    xxxxx ps my blog is http://katiejess.blogspot.co.uk/

    1. Katie—wow, you are so sweet and just totally made my day! Reading comments like yours give ME hope and inspiration. I will definitely check out your blog! —K