that’s what the universe was asking me on monday.
sunday night i did what normal people do an i made a plan. on tuesday morning a friend and i would drive our kids to a local bouncy-castle type place for some fun and a little break in the, “why is summer so boring at our house?” conversation. seems simple and straightforward, right?
not so much.
sunday night i went to bed with a fairly bad headache, but that’s nothing that should make headlines. by late sunday night, it was bad enough that i took some pretty serious painkillers. and i took 2 of them. not a good sign, but i still hoped to nip it in the bud. wrong.
monday morning i woke up throwing up from the kind of screaming stabbing smashing pain you never want to have. but really never first thing in the morning. i clawed my way over to the phone and cancelled a doctor’s appointment for later in the day and poured myself back into bed. when my youngest came to wake me up i just gasped, “…bad headache…can’t get up… get a big kid…” and put a pillow over my head so she wouldn’t hear me whimpering.
sadly, the bigger kids know the drill, so they mostly left me alone in the dark. every once in a while they would check to see if i needed anything, but since i’d planned ahead and dragged the trash can next to the bed (easier to throw up when you don’t have to move), i was about as ok as i was gonna get. each of their questions was met with, “unnh”, which is about all i can say when i hurt that much. and my kids know that translates to, “i’m alive, i’m coping, and that’s about all we can hope for right now.”
and i know this is not the correct approach at all, but i just couldn’t help feeling, all day monday and tuesday, that the universe was like, “ha! you think you’re miss thing! you want to go making plans and having a normal life? well i’ll just show you little miss chronic illness! you done got too big for your britches now, dintcha?” and the universe spit in my face.
took me down a notch.
slapped the smug right outta me.
dang. lesson learned.
the day after a horror show like that is always unreal. i told *h it’s like crawling out of a grave. i have no energy and i’m tentative about everything. my confidence is zero, my calm is zero, and my risk aversion is 100 percent. i don’t know why it works that way; i just know that it pretty reliably does.
i wish i could bounce out of bed, stronger and more resilient. i wish i could use the time under the covers like a caterpillar uses its time in the cocoon; i could emerge a glorious and breathtaking butterfly rather than a ghost-like moth.
but the pain just does something to me, and after all of these years of fighting, i feel more like a P.O.W. than a HERO.
sigh.
for the zillionth time we are adjusting my meds. one of my team of doctors (wish i could say that only for dramatic effect and not cuz it’s true) asked me when i’d last had a pain-free day. “ummmmmm… 2002? yes- early 2002!” i was kind of excited that i’d gotten the right answer, even though i hadn’t studied for the test. but he looked rather miffed, like i’d disappointed him in some way. he made me wonder if maybe i’d misunderstood the question. how else could i have gotten it wrong?
but that wasn’t the point, was it? he was looking at me because, in his mind, i’d just crossed over.
no, not ‘crossed over’, as in living to dead- crossed over as in formerly sane, normal, workable patient with pain, but now to be treated as a hated/detested/despised Pain Patient. one who is probably drug seeking. one who probably fabricates symptoms to get attention. one who probably makes things up to scam her employer or worker’s comp or whoever. one who can never again be trusted. one who should never again be truly listened to and one who should hopefully be passed off onto a different unsuspecting doctor ASAP.
and perhaps that’s why coming out of an especially bad pain day is as wrenching emotionally as it is physically. because perhaps a small part of my psyche, somewhere deep within the recesses of my brain, i’ve bought into that BS too.maybe i believe that i am that drama queen nightmare pain patient who just needs to get a grip.
but in my heart i know i’m not, and maybe that’s why i just hide under my pillow and whimper.
Jul 25, 2012 @ 19:57:26
I really hope you’re feeling better! When you emerge drained like that, rather than refreshed, your body has doubtless been working hard at some kind of healing process. You seriously need a doctor who CAN listen to and believe your experience–I hope you can find one!
Jul 25, 2012 @ 20:24:15
Just sorry. Sorry you have such pain. Sorry.
Jul 25, 2012 @ 23:57:46
(((((((HUG)))))))
Jul 26, 2012 @ 10:40:37
Sorry to see you’re under par Julie. Half a gallon of water always cures my headaches within about 20 minutes, if it’s worth a try. Might bring a smile to your face with this… Our appeal last night went very well, and the City’s determination that the garden violates code was overturned. Let me know if you want any additional information.
Karl Tricamo
Jul 26, 2012 @ 11:04:28
Julie I hope I don’t offend you, if so I deeply apologize in advance. After watching my mother suffer though years of pain with Arthritis. When my mother way dying I called in Angela Hospice to help care for her. When she died I was peaceful because she lived the last weeks of her life pain free and was able to enjoy her great-great-grandaughter. Perhaps you can consult with a hospice doctor on how to better manage your pain and live a better life?
Jul 26, 2012 @ 12:00:32
It just seems so wrong that a ‘pain management specialist’, which I would presume is the dr. on your team that you are referring to, would be so poor at his/her job. Pain specialists should know that their patients need additional compassion, less stigma, and more care, else they wouldn’t need a specialist.
I have no suggestions for how I handle your sort of situation…because, blessedly, I haven’t even walked an inch in your shoes. You do have my prayers though, and it does seem unjust that the universe has burdened you with so many challenges and pain.
Jul 26, 2012 @ 13:44:34
thank you.
Jul 26, 2012 @ 13:47:20
that’s not a bad idea, and i’m not offended at all. i think that they have lots more options at their disposal, since they are dealing with end-of-life pain, they don’t worry about things like addiction, respitory distress from over-medication, abilility to function on meds, etc. but it’s an interesting idea, and i’m open to exploring all options. and i’m happy you brought up something you thought could help because that means you care, so thank you
Jul 26, 2012 @ 13:49:00
yay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! i do, i do!!!!!!!!!!!!!!!!!!!! if you would share other info, i would love an email- or i could just check your blog, now that i am up and around- sorry i let the date pass without checking in (oops…)- buy hurray, you!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jul 26, 2012 @ 13:49:22
thx- sorry that you can relate to this all too well…
Jul 26, 2012 @ 13:49:37
thank you- i know that’s from the heart…
Jul 26, 2012 @ 13:49:55
thank you!
Jul 27, 2012 @ 00:39:05
Post aneurysm clip surgery the pain in my head and neck were undescrible, non-verbal, rolling moment to moment, never ending, too painful to think….Who helped Charles Chabal, MD. Top rated. Perfect mix of compassion and digging in to meet the challenge. http://www.healthgrades.com/physician/dr-charles-chabal-33csg the two things that ended up helping had nothing to do with drugs. You’ve probably seen enough, but another color for your paintbox.
Can I hope that, that was the last time? I do hope.
Jul 27, 2012 @ 10:38:04
I’m so sorry you have these headaches. I wish there was some way I could magic them away. I used to get migranes (it was related to my hormones), now that those are gone
the headaches are gone, but I remember feeling afterward just how you describe – shaky, tentative, “bruised.” Feed your mitochondria, it might help, who knows. Definitely can’t hurt. http://www.mhealthtalk.com/2011/12/hunter-gatherer-diet-feeds-mitochondria-brain-cells/
Jul 27, 2012 @ 21:35:02
thanks for the empathy and thanks for the link! never know what the “magic” cure will be
Jul 27, 2012 @ 21:36:32
thank you- and i will check out the doc too
Aug 05, 2012 @ 00:56:21
My pain is not as frequent our as severe as yours, but I know that look. So I’ve quit going to doctors. Everyone tells me I should try this one or that one, but I’m sick of those looks. I’ve never tried a pain management dr, because it sounds as if they don’t really manage pain, just randomly drug it. I hope one of these alternatives that have been suggested will bring magic to you! Never give up on trying to plan and be normal!
Aug 05, 2012 @ 03:15:55
u2- and good luck with your pain- i hope it resoloves for you like magic