RE: new outlook

[Guest guest]

LOL!  I can soooooo relate, Jenn!  Thanks for sharing!  I cath right on the

john, putting paper on the seat first, but my problem is trying to wash the cath

afterwards without people around (I have a reusable kind).  I need to soap it

up but am afraid of grossing people out, so sometimes I have to wait a while

until everyone leaves the bathroom and then I have to be quick about it before

someone else comes in and catches me washing it in the sink.  Anyone else have

this problem?  And, yes, I always have to help out my bowels, but I've gotten

used to it.  I think at this point the only thing that would mortify me is

having an " accident " show through my pants.  Thank goodness for Depends

" pullups. "   I'm a big kid now!  LOL!

 

--Barb from NH (born with Lipomyelomeningocele, got TC release May 2007 at age

45, now using a walker due to severe spasticity in left leg, plus spasms every

day and severe hip pain, but having a productive and enjoyable life anyway.)

Subject: RE: new outlook

To: tetheredspinalcord

Date: Sunday, April 26, 2009, 12:33 AM

Kathy,

Here! Here! Wonderful post. I couldn’t have said it better myself. And

thanks for the nod (although I will graduate with my second master’s degree

this summer, I still think I’m super lazy and can’t get anything done. See,

I still have yet to learn that patience lesson when applied to myself). But

thanks for the compliment. If anything, it does support the fact that even

though we have a life sentence, its not a death sentence, and we can still

lead a productive and happy life.

I have to comment on what you said about cathing and degrading. I always

hated doctors. I was MEGA-modest. I never could understand why every MD

would make me take off all my clothes and put on the stupid paper gown when

I was just going in for a sinus infection. Even a physical, I figured they

could get what they needed by lifting my shirt to listen to my heart/lungs

and the same to palpate my abdomen, etc. Then came the three back surgeries.

The first surgery I ever had was my first back surgery. With that, I really

felt that modesty went out the window – especially by the time I had my

third surgery wit the resulting paralysis (which includes paralysis of my

bowel and bladder). How much worse could it get than having to lay on a blue

pad and have little pieces of poop come out on their own and without my

knowledge, followed by the RN digging around doing a manual disimpaction

(more than once). Kathy - I think the idea of being incontinent for the rest

of my life and having to live with a diaper scared me more than the bladder

issue.

Then came my transfer to Shepherd Center. The best thing that happened -

but also the worst when it came to my modesty. My first day – when I was

getting signed in and checked out the first time… The RN is telling me

about the shower schedule (followed by my begging for a shower that

afternoon since it had been 3 weeks) and (now infamous) “bowel programâ€

schedule. I was excited that this “bowel program†would help me go to the

bathroom. I was SO constipated (between the paralysis and narcotics and

steroids, I hadn’t had a real BM in 3 weeks). Then 8pm rolled around and

the tech came in to do my bowel program. She asked if I wanted to watch TV –

“sure,†I said. So, I put on my program and she instructs me to roll on my

left side. Then I learned what a “bowel program†was. It was what the RN did

at the hospital, but only more methodical and longer – about 1 ½ hrs, to be

exact (and we just quit because I was too sore to continue). The next day, a

male tech did my bowel program (and a male tech that was younger than me).

Then came the realization that this “bowel program†was not just something

done to get my bowels going after surgery and impaction.. this was something

I was going to have to “learn†to do myself … and then do it for the rest

of

my life. Huh? If someone would have told me years ago that I would be

doing manual stimulation to go to the bathroom, I would have laughed and

told them that they were crazy.

Actually, I remember when I came home from my first surgery. I was dealing

with the narcotic & anesthesia constipation. I got ready to take my first BM

and it got stuck – literally. I was mortified that I had to “help†it out

by

hand. If someone would have told me then that helping my stool out by hand

would become a regular occurrence, I would have told them “no way, !â€

Back to my Shepherd Ctr stay. I remember the first time I met Minna. This

tiny little Asian woman (she really is TINY. I think her waist is as big as

the diameter of my thumb). She was smiling and dressed so nice (something to

which I was aspiring – to get out of my pants with elastic waistbands). I

was telling her about my aspiration and she says she’ll show me how she gets

dressed and “boom!†Off with her pants – in front of me – a total

stranger!

I was dumbfounded.

Now, almost 6 years since my initial stay at Shepherd, I totally get Minna’s

ability to show a stranger how to get dressed. Modesty is a thing of the

past. I could cath in front of a (female) stranger. We all have the same

parts, right? Maybe I’ve just “medicalized†my “parts.†I don’t

know. But

that month long stay at Shepherd really alleviated any sense of modesty I

had. Now, I’m the one visiting inpatients and showing them how I get my

pants on. Modesty, who?

As traumatic as the bowel program and learning to cath were, I actually

have no desire for my bladder function to return until I can squat over a

public john. I have encountered so many people – both on this list and as IP

and OP at Shepherd – that are so traumatized by cathing. They want nothing

more than to eliminate cathing. There is actually an implant that can

operate the bladder sphincter and eliminate the need to cath (using a RF

transmitter held to the receiver implanted in the abdomen instead). BUT –

in order to use this device, I would have to 1) transfer to the toilet, and

2) sit on a public john. The thought of transferring to a toilet every time

I want to pee, is maddening. Then, the thought of having to sit on a public

john is disgusting. Until I can squat over a public john, I have no

interest. Cathing – I can pee anytime, anywhere. No toilet even needed. I

don’t have to transfer to the toilet, cathing from my chair. I can use the

grossest public john and no problems. I don’t use the toilet anyway. I

remember traveling from panama City to Tampa on spring break in high school.

I had to pee SOOOOO bad. We were in the middle of nowhere. We finally come

to the only gas station for miles and run to the bathroom. I open the door

and see a toilet with no seat and feces everywhere. I thought my bladder was

going to burst. I was would have rather squatted in the brush and taken my

chances with an alligator biting me on the arse. I managed to hold it until

we got to the only restaurant for miles. The light was out in their

bathroom. Cathing would have been a Godsend then! On my roadtrips

since my paralysis (even those with my family when I wasn’t driving) cathing

has made things easier. I don’t have to stop to go (although my dad

typically has to make more frequent stops than I would require) and no

worrying about the condition of the bathrooms.

Cathing to me has been one of the least traumatic things to learn to deal

with. Although when I was learning, there were some traumatic moments. Mom

was with me, helping me cath on my own from my chair to the toilet (rather

than cathing in bed) for the first time. Mom and I are in the bathroom,

she’s helping me and supposed to be holding the extension tubing to the

toilet. Well, I’m going. She reaches for something and in the process drops

the tubing, letting pee go everywhere. I’m screaming at mom to grab the

tube, then crying, mom’s screaming then crying. My roomie was in bed. I yell

to her to call the RN. They ask what the problem is and she says that she

doesn’t know , but all she hears is a bunch of screaming and now crying. The

RN runs in. But, by this point, mom and I are laughing so hysterically that

we’re crying. The RN hears us laughing, but sees us crying and isn’t quite

sure what to make of the situation. Not to mention that mom and I are pretty

much soaked in pee from the waist down (mom from the knees down). Eventually

mom and I manage to eek out that I’m okay and we just had a little tubing

accident. Now the RN is laughing with us. Then, mom and the RN help get me

and my chair cleaned up – telling the story and laughing the whole time. The

moral of the story? 1) things that seem traumatic now won’t seem so bad in

another minute, hour, day, month or year. Try to remember that when you’re

upset. 2) Sometimes things are so bad its funny. ’s law at its best.

If you start laughing at it, odds are, you’ll keep laughing and see the

humor embedded in it all and things won’t seem so miserable. Its hard to be

miserable when you’re laughing.

Thanks for the reminder to keep smiling.

Jenn

From: tetheredspinalcord@ yahoogroups. com

[mailto:tetheredspinalcord@ yahoogroups. com] On Behalf Of DK Moulton

Sent: Saturday, April 25, 2009 3:15 PM

To: tetheredspinalcord@ yahoogroups. com

Subject: new outlook

<<SNIP>>

When I was told I would have to self-cath for the rest of my life (after my

first untethering at the age of 37) I wanted to die. I thought there can be

nothing worse, nothing more degrading than that. I sunk into a deep

depression over cathing! I look back at that and I think if only I knew how

many more degrading things were going to happen to me, I would have saved

that pity party for when I needed it ;-) However, by then, I knew how to

deal with this stuff from talking to others and allowing myself patience.

Much more degrading things have happened and continue to happen. I truly

hate certain aspects of this condition; however, it's who I am now, it's now

my body and if I didn't learn to suck it up and live with it and especially

around it, I was going to be one sorry sack that no one, and I mean no one

would want to be around. And where would that get me - bitter, lonely, and

oh such a sad person for giving up the one life I have. And this is it

folks, no re-dos in life - this is our life, our gift (no, I'm not a very

religious person, but I do think that once you are born, it is a gift to

just be alive and we can all find a way to be productive in some way and

give back even if the only thing we give is setting an example of how to

live with a life-long medical condition.

There really is just so much to be thankful for. We are not dying from this

condition. We do not have to go through burning radiation for treatments.

Look at Jenn from our list. She is getting her master's degree (her second

one?) got her master's as a mom of four kiddos, working full-time,

in agony, in IT of all fields. Can you imagine? travels everywhere

she's invited to. I have a horrible attitude compared to those three but

when not compared to them - I'm ok ;-)

<<SNIP>>.

Again, we have not been given a life sentence here folks - yes, it sucks at

times, yes we all deserve pity parties at times <<SNIP>>, but what if we all

agreed to only allow ourselves so many minutes of a pity party and we

doubled that time to spend weekly to think about what we are thankful for

(or tripled the pity party time?)

<<SNIP>>

I understand all of this and I understand the degrading aspects of this. I

have them all - bladder/bowel - cathing, loss of bowel control, excruciating

pain, a leg that disappears and I have to have my husband/daughter/ son help

me out of a store or I have to sit at work and pretend that nothing is

wrong. And so much more - so much more just like most of you. I just think

we all need to get to a point where we figure out a positive way to live

with this. It can be worse, it can be better, but it is what it is and we

can all hope that a research team somewhere will figure out a way to fix us

- but until then...

<<SNIP>>

If anyone wants to add to this to get not only us positive but those that

are just starting this new part of their lives, let me know. What a gift

though we could give to others just starting this path if we show them it

can be done, it's not a life-sentence, and you can be happy and live with

this crap.

Kathy