an answer?!?
Jan. 5th, 2002 01:13 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
rootofnewtyesterday, i woke up and showered quickly. then i settled down to make a few phone calls before i left to pick up ![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
ashbet for the day. first, i called the orthopoedic surgeon's office, to see whether my appointment was at 1 or 1:30. i wrote down 1 in my appointment book, but i didn't remember if that was appointment time or the "show up half an hour early" time. it was the latter. they also said they hadn't received the referral i requested my PCP send back in november . i thanked the lady and called my neurologist's office, to see if *that* referral had been received. the nice lady at the desk said she'd go check the fax machine and call me right back.
after 10 minutes of no call, i decided to call my PCP's office because i needed to get on the road ASAP.
i was rather infuriated when the desk receptionist said "well, why didn't you check to make sure we'd sent that referral if you requested it so long ago?"
i really wanted to say a few things, but kept my tongue in check. I'll save those things for the letter i send to the office manager, in which i offer my services to do just that, for a fee. oh, wait, that is themanager's job. oops. i also re-requested they send the neuro referral.
she reminded me that referrals take two weeks. i reminded her that yesterday was a special exception and that the ortho's referral was requested over a *month* ago. she shut up and promised to send them by noon and one, respectively.
so i go to pick up ashbet... right before i turned into her neighborhood, a half dozen deer bounded across the road in front of me. this helped my mood somewhat. she and i vented about evil doctor's offices after i picked her up.
we headed into DC. i dropped off the Klonopin 'script and we decided to eat lebanese for lunch. i took her to my favorite little hole in the wall (wrdgrrl and jkatj, it's changed owners within the family and is now very pink inside, but the food is still yummy). i had a lovely bowl of crushed lentil soup and a pressed halloum sandwich. ashbet enjoyed spinach fatayeh and a beef sandwich of some sort. we also drank up our homemade lemonade. yummy.
then we headed to the hospital. i think ashbet was suitably impressed (or perhaps disturbed) by the labrynthine passages we took. i checked in with out-patient registration (the wrong one, it turns out, but they took me anyway, because the *other* one is full of perfume constantly since the staff there reek). turns out my referral had NOT been received just yet. it's after one, so the nice lady at check-in lets me call my doctor's office. the desk clerk promises to fax it right away, but i have to get to my appointment, so i sign a financial responsibility form (this sucks. *i* should not be responsible when i did all i could to get my referral there in time), and am on my way.
ashbet and i head upstairs to the limb center, where i fill out yet another pain/medical history form. you'd think that i could just have one monster file within the hospital and all the doctors would have access to it. on the other hand, the ortho surgeon won't be privy to comments another doctor might've made about how i'm a freakin' hypochondriac. some people don't understand fibromyalgia.
i waited half an hour and was finally called. after reminding the nurse to fetch my x-ray films from the hospital library, i then sat in the examining room for twenty minutes or so. i nearly fell asleep.
finally, the doctor walks in, followed by a flock of bleary-eyed residents who were gazing at him as though he had a brilliant halo shimmering about him... he looked at the history form, said my x-rays were normal (of course), then palpated my foot as i described my pain.
then he said it...
"yeah, just as i suspected. your second bone is too long. here's a prescription for orthotics," he quickly dictates to a nurse what to write down on the pedorthic 'script form, "and make sure you do these stretches." he hands me a form. he also told me he understood that the reason my achille's was so tight is that i haven't been able to do any weight bearing exercise or stretches and that, at the moment, i won't be able to do much until i have the orthotics.
because i haven't been able to manage the fibro well (no exercise), i've entered a minor cfids slump... so i won't be able to do any major walking until the orthotics and stretching have taken their hold (a month to three, i think)...
and then the doc was gone. he was there all of five minutes. and that's being generous.
he gave me an answer.
at least three years of pain, the last several months of which have been highly distressing. and my PCP kept brushing me off. i could've had this taken care of long ago.
ashbet was hoping the remedy was shaving off the bone a bit, giving someone a nice toeknuckle pendant.
so i have a long second metatarsal... i wonder if that's why my second toe is so long. it connects, right?
wow. i have an answer to some of my foot problems--the overwhelming pain, at least. and the neuro has decided i *do* have CTS, so i'll have good splints, for once.
this doesn't all address the tingling in my toes, but maybe the Johns Hopkins stuff will, if i can get it done. if not, i'll live.
i want a big sign now that says "SEE?!? It's NOT all in my head. There are MECHANICAL and PHYSIOLOGICAL issues at work here."
wow.
ashbet for the day. first, i called the orthopoedic surgeon's office, to see whether my appointment was at 1 or 1:30. i wrote down 1 in my appointment book, but i didn't remember if that was appointment time or the "show up half an hour early" time. it was the latter. they also said they hadn't received the referral i requested my PCP send back in after 10 minutes of no call, i decided to call my PCP's office because i needed to get on the road ASAP.
i was rather infuriated when the desk receptionist said "well, why didn't you check to make sure we'd sent that referral if you requested it so long ago?"
i really wanted to say a few things, but kept my tongue in check. I'll save those things for the letter i send to the office manager, in which i offer my services to do just that, for a fee. oh, wait, that is the
she reminded me that referrals take two weeks. i reminded her that yesterday was a special exception and that the ortho's referral was requested over a *month* ago. she shut up and promised to send them by noon and one, respectively.
so i go to pick up ashbet... right before i turned into her neighborhood, a half dozen deer bounded across the road in front of me. this helped my mood somewhat. she and i vented about evil doctor's offices after i picked her up.
we headed into DC. i dropped off the Klonopin 'script and we decided to eat lebanese for lunch. i took her to my favorite little hole in the wall (
wrdgrrl and jkatj, it's changed owners within the family and is now very pink inside, but the food is still yummy). i had a lovely bowl of crushed lentil soup and a pressed halloum sandwich. ashbet enjoyed spinach fatayeh and a beef sandwich of some sort. we also drank up our homemade lemonade. yummy.then we headed to the hospital. i think ashbet was suitably impressed (or perhaps disturbed) by the labrynthine passages we took. i checked in with out-patient registration (the wrong one, it turns out, but they took me anyway, because the *other* one is full of perfume constantly since the staff there reek). turns out my referral had NOT been received just yet. it's after one, so the nice lady at check-in lets me call my doctor's office. the desk clerk promises to fax it right away, but i have to get to my appointment, so i sign a financial responsibility form (this sucks. *i* should not be responsible when i did all i could to get my referral there in time), and am on my way.
ashbet and i head upstairs to the limb center, where i fill out yet another pain/medical history form. you'd think that i could just have one monster file within the hospital and all the doctors would have access to it. on the other hand, the ortho surgeon won't be privy to comments another doctor might've made about how i'm a freakin' hypochondriac. some people don't understand fibromyalgia.
i waited half an hour and was finally called. after reminding the nurse to fetch my x-ray films from the hospital library, i then sat in the examining room for twenty minutes or so. i nearly fell asleep.
finally, the doctor walks in, followed by a flock of bleary-eyed residents who were gazing at him as though he had a brilliant halo shimmering about him... he looked at the history form, said my x-rays were normal (of course), then palpated my foot as i described my pain.
then he said it...
"yeah, just as i suspected. your second bone is too long. here's a prescription for orthotics," he quickly dictates to a nurse what to write down on the pedorthic 'script form, "and make sure you do these stretches." he hands me a form. he also told me he understood that the reason my achille's was so tight is that i haven't been able to do any weight bearing exercise or stretches and that, at the moment, i won't be able to do much until i have the orthotics.
because i haven't been able to manage the fibro well (no exercise), i've entered a minor cfids slump... so i won't be able to do any major walking until the orthotics and stretching have taken their hold (a month to three, i think)...
and then the doc was gone. he was there all of five minutes. and that's being generous.
he gave me an answer.
at least three years of pain, the last several months of which have been highly distressing. and my PCP kept brushing me off. i could've had this taken care of long ago.
ashbet was hoping the remedy was shaving off the bone a bit, giving someone a nice toeknuckle pendant.
so i have a long second metatarsal... i wonder if that's why my second toe is so long. it connects, right?
wow. i have an answer to some of my foot problems--the overwhelming pain, at least. and the neuro has decided i *do* have CTS, so i'll have good splints, for once.
this doesn't all address the tingling in my toes, but maybe the Johns Hopkins stuff will, if i can get it done. if not, i'll live.
i want a big sign now that says "SEE?!? It's NOT all in my head. There are MECHANICAL and PHYSIOLOGICAL issues at work here."
wow.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2002-01-05 11:27 am (UTC)no subject
Date: 2002-01-05 11:53 am (UTC)I tried that. What happens is that people whisper to one another behind their hands, saying "Wethinks the lady doth protest too much." But then, I live in a Shakespearean stage set.
(removing tongue from cheek)
Hugs, sweetie. It's always good to have a dx. I wish you didn't have to hurt so much.
no subject
Date: 2002-01-05 12:20 pm (UTC)an answer. is it too much to ask?
how much will it solve? just the walking, or is all the fibro linked up to it as well?
complex answer, sort of...
Date: 2002-01-05 01:38 pm (UTC)my CFIDS is largely related to how well i manage my energy and my fibro. if my fibro is being managed well, my CFIDS is more or less in remission. i still tire easily and need a lot of resting periods, but i'm not housebound.
my fibro management consists of adequate, good sleep (melatonin, flexible sleep schedule); gentle exercise (lots of stretching, walking); and eating well. I also must avoid my MCS triggers (chemicals, including fragrances, cleansers, fumes, etc).
The foot pain impacts my ability to exercise, my ability to sleep well, and my ability to do anything like meditation. It's that bad.
So I've slipped into a fairly nasty CFIDS crash (for me) in which i need a lot of sleep and naps and those don't help because the pain interferes... and i'm getting stiff because any exercise makes the cfids worse, even if i'm not on my feet.
my achille's tendon has become less flexible, which makes the metatarsal pain worse, apparently.
it's a vicious cycle. orthotics will enable me to get on my feet and will help the pain diminish over time, helping my sleep. i'll be able to do the stretches with orthotics, which will slowly help the fibro a little. it will take me quite a while to get out of the cfids crash, but as i work on it slowly (i'm very stubborn), i hope to be able to continue stretching until i can walk a distance without making myself unduly tired.
hopefully i won't just end up flat on my back in bed. that would suck.
i actually was at a GREAT point fibro/cfids wise in 98, nearly a year after i fell ill. a combo of flexeril, wellbutrin, and exercise got me to the point where the CFIDS was in remission and i was able to go on long hikes and even *jogging* without crashing at all. the fibro pain was still present, but minimal. i had ultram for the times when it got a little annoying.
and then a doctor put me on plaquenil and i got sick sick sick and never really recovered completely.
since late july, i've been feeling more and more fatigued and my pain level has skyrocketed. and this was all due to the foot pain getting horrid to the point it interfered with sleep and exercise.
off my soapbox now. ;)
no subject
Date: 2002-01-06 09:26 am (UTC)(((hugs)))
-- Andi
Re: complex answer, sort of...
Date: 2002-01-07 11:32 am (UTC)i hurt just thinking about it, so i can't imagine how you must feel...
do you know why it's got worse recently? the foot pain that started this, i mean?
Re: complex answer, sort of...
Date: 2002-01-07 12:39 pm (UTC)if not that, i have no clue. :/
but, basically... as i aged and lost the fleshier bits under my metatarsals, the second one, being longer than normal, got pissed off. and it's gotten worse lately b/c i haven't been able to exercise and stretch out my achilles.
evil foot gnomes, i tell you