Re: Sacral iliac Joints

[Guest guest]

Kathleen,

Believe it or not, I really can relate to your situation. I am so sorry for

all that you go through! Life is so strange. Who can figure it out? I had

to have my bladder removed due to its becoming " neurogenic " or uncontrollable.

I went through all kinds of tests, tried self catheterizing for a year and a

half, then an Indiana Pouch (continent diversion) which was never continent

(why would it be!) and finally a total urostomy (I wear a pouch). All of this

came from my spine. Next would be the colostomy, which I am trying as hard as

I can not to have. I am managing life with one pouch, but doubt I could do it

with two. This spine thing as absolutely no joke. I was relieved to see you

speak out so candidly. I cannot even speak out with my own sister! I am so

glad you are around. I'm also glad that you have at least found some way to

" deal " . I often go over to your site, also.

Sincerely,

Carole M. (the elder)

P.S. Those two operations (above) were each at least ten hours long. Right

in between them came my first scoliosis surgery. (Harrington/luque rods,

another ten hour stint) Whoops! I almost forgot the kidney surgery!

[Guest guest]

OMG Kathleen. That was the post of the decade. I liked it when you

mentioned..

.. " YES I already have a urologist and i have all my bases covered. I own

23 doctors. "

So true. I am not up to that many yet, lol, but I am in the process of

gathering my bouquet of good Doctors too.! : ) Not an easy task.! It

looks to me like us Scoliosis Flatbackers have a long row to hoe. I like

your upbeat attitude about it though.! I too have become more realistic

about this onerous plight and how to stay grounded in the midst of

this nightmare of medical madness. Your very poignant post lends itself

to the resiliency of the human spirit in spite of these overwhelming

obstacles. This is an all consuming, life, altering process that we face

every day here when jousting with this monster called HARMS. I was

happy when I was finally diagnosed in the year 2000. Yet, I had been set

on a new course of a nightmarish no- mans land in which there are very

few good answers. I know what I am up against now. It is an ominous

uphill battle for the rest of our lives. Like you, I find solace and

comfort in family, friends and the simpler more important things in

life. This scoliosis flatback thing has a way of forcing you to " get

real " in no uncertain terms. You learn to treasure the things that tend

to go by unnoticed by others who are Physically " Healthy " . You learn to

bury some old dreams, replace them with new more humble ones, and

treasure what you still have, I applaud your courage and admire your

" Feistiness " . Good luck to everyone who is walking these same steps. It's

an arduous journey but I am grateful that we have each other to lean on.

Carol

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[Guest guest]

Carol,

That was SUCH a beautiful letter you wrote to Kathleen! You certainly " said

it " for so many of us! Thanks!

Carole M.

[Guest guest]

, Kathleen, and fellow Feisties,

First off...I must AGREE with that Kathleen's post-revision problems

(i.e. bladder, bowel etc.,etc.,) are probably NOT the norm for most revision

patients. Granted, we all occasionally use this Feisty site to air our problems,

our fears, our questions and yes, our bad days. But more than that, this is a

site to HELP and ENCOURAGE each other. We are all, in one way or another, in a

no-win situation. All we can do is KEEP TRYING, KEEP HOPING and TRY TO KEEP A

POSITIVE ATTITUDE about the hand we've been dealt. Unfortunately, there are no

magic cures or automatic fixes for us.

From the moment we entered the world of Flatback and revisions, we joined a

truely unique group of scoliosis patients. As if having Harrington Rods (and the

scars to prove it!!) Riser casts and prism glasses wasn't enough to throw at us;

now we have to deal with a whole new set of situations. And this time, we don't

have our parents to fall back on to make the surgical vs non-surgical

decisions!! WE are now the parents! WE are now the wives and husbands! WE are

now the Moms and Dads! And the decisons we make for ourselves can affect a whole

lot of people besides ourselves!!

Every morning when I wake up, before I even attempt to " log-roll " over and try

to put my feet on the floor, I say a little prayer to " Whom-I-Believe-In " (so as

not to offend any religion out there!! ha!ha!) and ask that I be able to get out

of bed with as little pain as possible; that I will be able to get through yet

one more day without giving up; and that I be the best wife and Mom that I can

be that day. There are some days that turn out better than others...some days I

can cook and clean and go shopping and not grimmace in pain with every step I

take. And then there are the days that aren't so great..those days where the

pain and numbness in my legs won't allow me to do those things and I have to

spend the day resting. But on the whole, I'm grateful for those good days and

try to ignore the bad ones. There are days that I can't sit here on this

computer and read all of your postings...but then there are days like today when

I can...and I'm thankful for today!!

So as not to make this posting too long, I'm going to sign off here with a

little " prayer " that each of you are having one of YOUR good days!! In another

posting, I'll tell you all about my visit with my Orthopedic surgeon

yesterday...the man who did my revision...the man I hadn't seen in over 2 yrs!!

But I want this posting to end on a positive note...

All the best,

Beth

[Guest guest]

Beth,

That was a beautiful note. Thank you! You are so right! Yes, WE are the

people making the decisions, etc. That makes it all even heavier! But, we will

continue to ENCOURAGE one another!

Carole M.