Re: On Keeping On Keeping On, or Forget the Big S -- Please!

[Guest guest]

Dear Llewyn, Carole, and Everyone,

First of all, I love you. I am not sure what I would do or who I would be

without you.

Now, then. Please be aware, despite my somewhat lurk-ish behavior of late, that

I am seeing and reading all these posts. You know, the ones about how hard all

this is, how death and an end to pain may even beckon to us sometimes.

I wish I had more to say in response to this perfectly comprehensible despair.

I am definitely less articulate here in the dead of winter -- but not one iota

less empathic, believe me. I think that many of us " have been there. " (I suspect

that more than a few of us ARE there at this very moment.) This is a bitch of a

condition to live with -- this HARMS/flatback/sagittal

imbalance/heart-and-soul-and-whole-person imbalance, borne of a load of rotten

luck in the musculoskeletal realm.

I just want you all to know that I am here for you and rooting for you -- that

that no one in this group is ever far from my thoughts.

Speaking personally: Even without regard to any question of clinically

diagnosable S.A.D. (is that the right acronym? -- " Seasonal Affective

Disorder " ), sometimes a little spring can make a whole lot of difference for me

-- regardless of how wide the abyss may seem to yawn during these coldest and

physically most treacherous days. And we are safely past the winter solstice:

As a family member reminded me earlier today, the days are getting a little bit

longer now, with each new one that rolls 'round.

I believe, as well -- albeit " irrationally, " simply from my gut or from flying

by the seat of my pants or from living through plenty of bad (small-s) sh-- over

the past 55 years -- that there is some light inherent in every siege of

darkness, True, the light is usually invisible to us in the throes of an

immediate piercing desperation, at this particular depth of

solitude/horror/perceived incapacity. But hang on, my friends, hold tight to

that thread -- to whatever faith you you can muster, to whatever joy you can

recollect, to the hand of a friend or a child, to a hope for tonight or tomorrow

or someday soon.

You are infinitely precious and important and are badly needed in our world.

I cherish your uniqueness, your friendship, your insight -- your hot tips, your

rueful comments, your harrowing escapades, your philosophical musings, your

impetuous humor, your ongoing defiance: of pigheaded though highly credentialed

medical authority; of dangerous though highly impassioned and persuasive

pseudo-medical quackery and delusion.

I love your droll and eloquent street-smarts -- your ability to see and expose

all that generic everyday thoughtlessness, as well as the more exotic brands of

barbaric insensitivity, which assail the less able-bodied among us -- your

intolerance, on behalf of all of us and yourself, of every kind of gratuitous

or impulsive cruelty, adroitly rationalized hypocrisy, preposterous baloney, and

odiferous if ubiquitous tripe.

I love and admire your awesome courage and endurance in coping with impossible

physical pain and improbable barriers and burdens to mobility -- not to mention

maddening medical personnel and sadistic or obstreperous bureaucrats in general.

I value and draw strength from your capacity to get through most days, at least,

without screaming too terribly loud or clobbering the nearest neanderthal; your

gentle care and compassion for each other and for me.

Whatever else you may do, fellow feisties, PLEASE do not give up! I need you.

We need you -- every last one of you.

Your presence on this planet, in this epoch, is a blessing beyond description --

a light and a lift and a wondrous, sustaining gift to us all.

Re: RE: disabled friends

Hi Llweyn,

I am so glad that you are meeting those nice people out there! You are

one

of them, too, you know! Who else would have directed me to the

dress/clothing

making forms, etc., that you did!

I saw your earlier post, too, about the big " S " word. I think that at

some

point maybe all of us have considered that. It was many years ago for me.

Now

I am just grateful that I am here to see my grandchildren. The thing is,

that it is still unfair for some people to suffer so much more pain than

other

people. Yet, I think that it builds character if we can survive it.

Please

stay with us! We need you!

Sincerely,

Carole

[Guest guest]

Beth,

I don't know if my experience will help at all, but I've been fused

from T5 to the sacrum for almost 27 years and a couple of years ago,

a radiologist told me that although my SI joints couldn't be seen

real well on x-rays, they looked okay. My hip joint was another

story, though....

I'm so sorry to hear of your new problems, and I think you were very

wise to make that appt. I've always been of the opinion that fear of

the unknown is worse than facing reality. I truly hope that whatever

is causing your new symptoms is not as serious as you fear, and would

not require a drastic fix. It seems so unfair when someone develops

new symptoms, especially those who have had multiple surgeries.

I personally don't put much stock in the superstition of the 13th

when it comes to flatback. I consider having flatback enough of a

bad luck thing in itself. Any other bad luck thing like the 13th

would probably have just the opposite effect and be a good thing.

All the best to you for your upcoming appt., Beth,

loriann

p.s. 's post gave me the shivers, too. One of these days

I'm going to get up the courage to make an appt. with my doctor.

Ugh, I've been talking about it for weeks, now, it's getting

embarrassing that I haven't done it.

[Guest guest]

Thank you so much, Beth -- from my depths.

I needed to write that post. At such times, I just sit there and let whatever it

is write itself, and do not much edit or judge but just send it where it needs

to go.

You are the second person who wrote something about having shivers. I was having

shivers too, not only while writing that post but while reading this reply from

you.

I sense that it is really, definitely time to get my book of meditations

together for for women with a disability or a catastrophe on their hands. And to

find an agent, market the manuscript, the whole business. I am just not really

doing it yet. Admittedly I've had a couple of false-starts, like also sensing

that the perfect title had come to me from the farther reaches of my muse or

whatever -- only to find the title all over Amazon, just as I had feared. (I'm

almost embarrassed to tell you, but oh, o.k., Waiting for the Light. And there

are only about 2.000 other books on the general subject, right? -- from Living

in the Meantime to The Light Inside the Dark. My task will be to convince

someone that my shivery meditations are something a little different that might

help people even if they have already read other Buddhist/Vedic/rabbinic/etc.

meditations/Rilke-an prose-poems, and so forth. Hmmm, maybe I should call it

Shiverings? Something with " Shiver " in it? OK, enough of this intemperate

ego-massage, sheesh, sorry!)

I hope you are able to get some hopeful and definitive info. from this ortho you

plan to consult. I know you are doing the right thing. I am so sorry you have

been tortured to this degree with the kind of pain and numbness you describe.

I may be a little more accustomed (I almost wrote laid back, but that's not

quite it) about all kinds of weird paresthesias, simply because I was alarmingly

and widely numb, on and off, in various body parts, for months and months after

my last revision. Eventually it all got much better and largely went away,

tending to confirm for me one doctor's explanation that it was just nerve

pathways, injured during the surgery, reestablishing or reconnecting themselves.

Of course you need a specialized assessment of why you should be having such

problems at this stage. I guess I am not much of an ad for revision surgery, all

in all, so I'll refrain from chattering away on that particular subtopic. I

latch onto the simplest little statements to calm my own fears. For instance, I

was vexed for some time at the thought that my S-I joints had yet to be fused

and might fail me. When Dr. Ondra told me they were fusing anyway, " naturally, "

over time, and would not be a problem, I was able to put that whole issue out of

my mind (or remove it from the fat figurative file up there labeled " Worries in

Which to Engage at Least Bi-Weekly " ).

Thank you again for your letter, Beth. It was so good to know that my need to

connect was not just somehow unilateral. People were kind of silent for a while,

and I figured at first that no one had any response. Which was fine, of course

-- what I most want this forum to be is a place where you can be genuine and

honest, say what you need to say, remain silent when that is your response.

Still, I guess I did wonder a little about my earlier intuition that I

absolutely " needed " or was " meant " to write that post. What if it was no help

to anyone? Worse yet, what if people actually found it objectionable or annoying

-- too New Age, too flowery, too corny, too whatever? Should I have kept my

blasted " authentic thoughts " , my shivery impulses, to myself?

On the other hand, it seems to me that sometimes we can not even judge the

meaning of things or fully understand why we need to do certain things until

many years later, if at all. And so . . . what a warming and encouraging

" bonus " to get your lovely post.

You are one of the site-stalwarts, and boy, do we need you. So please take good

care of yourself, Beth, and please continue to keep us posted on your progress.

With gratitude,

Re: On Keeping On Keeping On, or Forget " the Big S "

-- Please!

and all my fellow Feisties,

I just read post on how important we all are...not just to our

families and friends but to each other as well. I immediately printed it out and

put in on my fridge door, where all important info is placed!! There must be a

bizarre vibe, some strange form of E.S.P. among the folks on this site because

her message could not have come at a more appropriate time for me. As I was

reading it through tear-blurred eyes, I got those weird goose bumps I can only

attribute to the " How did she know??!!-Factor " associated with this web site.

It's happened before... I'll be having a bad day or feeling sorry for myself and

then BOOM!!! there on my computer screen will be a message from someone speaking

directly at me through the magic of the FeistyScoli site!! It freaks me out!!

's message came through loud and clear for me today and I can't thank

her enough for that. It made me stop feeling sorry for myself about my recent

physical decline and do something about it! Hopefully, there are some others out

there who can shed some light on this dilemma for me, so here goes...please feel

free to offer advice of any kind, pro or con, or even tell me I'm just being

paranoid if necessary!!

Since Thanksgiving, I've been having increased pain around my original bone

graft donor site (left posterior iliac crest) as well as more frequent bouts of

total numbness in my left leg. I originally attributed it to riding 457 miles in

my husband's truck up to Pennsylvania for the Thanksgiving holiday. A

wheelbarrow has more shocks in it than the truck and I've never been good when

it comes to long car trips. The pain is not the same type of pain I normally

associate with donor site pain...that dull, achey, acts-up-when-its-damp type of

pain. This is more intense and localized and is not relieved by heat or

position. I've had residual numbness/neuropathy in my left leg since my

revivison procedure (T10 to sacrum with rods and pedicle screws in June 2000)but

this recent numbness is bordering more on the complete paraalysis type as

opposed to the patchy, burning, nerve related type I've become used to.

I did my best to ignore most of the increasing pain and loss of coordination

in my left leg for a while. At Christmastime, I made the trip to PA. in my son's

car, again, thinking it was the truck's fault. That didn't seem to make any

difference. The pain remained the same, unrelieved by any of my normal meds

(OxyContin CR and IR, Neurontin, Soma). Then one morning about 3 weeks ago, I

went to get out of bed and much to my horror, my right leg (my GOOD leg!) was

partially numb and I was having the same burning, nerve-type pain in it. I

freaked!! As the day wore on, the numbness subsided somewhat, as did the

burning, but it was there.

I've been a real bitch these past few fews...partly from the pain but mostly

from the fear. Fear that this is all somehow related to (self-diagnosis here)

deterioration of my S.I. joints. I've been reading with increased interest some

of the recent postings regarding fusions into the sacrum and SIjoints. And while

I am by no means an extremely active person e.g. jogging, swimming etc. I'm

acutely aware of how much stress I must be putting on the SI joints just to

walk, get in and out of chairs, up and down steps, etc. Unfortunately, I've been

a firm follower of the " ignorance is bliss " / " what I don't know can't hurt me "

philosophy when it comes to my spine problems. It's what's made it possible for

me to function in a world of endless pain for many years!! But in this case,

it's also turning me into a paranoid wretch to live with and that's got to stop!

My mantra for the past 3 years has been " NO MORE SURGERY, EVER! NO MORE

SURGERY, EVER! " Which would explain why my hands were shaking today when I made

the dreaded call to my Orthopedic surgeon for an appoinment. I suppose it can't

hurt to get an x-ray to see how things are doing in there. My last visit to the

surgeon was my 1 year post-op visit...at which time I said a " thanks for

everything; hope I never have to see you again " kind of thing! But after

discussing my symptoms with my Pain Management doc (who basically said he can

treat the pain but he knows very little about the mechanics of this type of

spinal fusion) I knew I had very few options. Making that phone call today was

one of the hardest things I've had to do in a very long time. But thanks to

's post, I knew it's what I had to do to remain sane!!

Can anyone give me any insight into sacral fusions and SI joints? And and all

info, good or bad, will be greatly appreciated at this point. My appointment is

for 2/13/04...I'm desperately trying NOT to become supersticous about the fact

that the appointment is on Friday the 13th!! HELP!!!!

Thanks again ...you'll never know how important your posting was for

me.

All the best,

Beth

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

[Guest guest]

KC,

I refuse to get sucked into the superstitions!! My hubby is superstitious

enough for the both of us! I am not going to think of 2/13/04 as a BAD day...I

keep reminding myself that it's the day after our son's 19th birthday and 212 is

actually one of the 3-digit #'s we occasionally play in the Lottery!

Thanks...All the best,

Beth