Re: introducing myself

[Guest guest]

Hi Layne, Welcome to our family. I know the

circumstances are not the best, but we are a good lot

of folks.

There is no such thing as a dumb question, or too many

questions. You might want to go to pscf.org to find

many of the basic questions already answered, but,

regardless, we answer all of them from fingernail

problems to libido concerns. (if you lurked a while

before joining, you probably already know that)

We are here to learn, support, cajole, and deal with

life. Again, welcome to our family.

in SUNNY MICHIGAN....eat your heart out Sis!

[Guest guest]

Welcome Layne!

Glad you found this wonderful group of caring and supportive people. As said no questions are dumb - just ask and hopefully someone will have an answer.

I don't have a j-pouch but did have UC with an ostomy done when I was 17.

As you can see from my signature a continent ostomy was done 7 years ago.

I like it much better than the standard ostomy.

What area of the world are you from? Tell us a little more about yourself. You might try putting the information on the signature like some of the group have done - saves a lot of typing.

Blessings,

Barby

married 21 years, mom of 5 sons- KS

UC - dx in 1965 (11yo), total proctocolectomy with ileoostomy 1972, BCIR (continent ileoostomy)1994

PSC- dx in 1999

nordgren1@...

[Guest guest]

Hi again!

I am feeling really intimidated right now because I know so little about my

disease and treatment. I don't know what kind of j-pouch I have or what

stage of psc I am in. I think I may have gotten some bad doctors or

something because they haven't told me anything about where I am at all.

Until recently I really thought from some stuff said when I was first dxd

that I was going to keel over any minute. So I am sooooo glad to have found

this list.

I am on no meds and receiving no treatment right now.

I have been doing a lot of freelance, trial and error, holistic stuff at

home. I reduced stress, spend at least two hours outside a day - it helped

my daughter's jaundice when she was born so I figured it couldn't hurt and I

do feel a lot better for whatever reason - I sleep more and try to keep our

home toxin free by using homemade cleansers and eating as organically and

naturally as possible. It has helped a lot. It is really hard to explain

to my ILs but I can feel the difference and I lucked out and had a

nutritionist/in home nurse assigned to me through the nursing agency after

my jpouch and she helped me analyze my diet and get more on the right track.

Right now we have just moved to Germany (just north of frankfurt) from our

home state of TX (dh is in the army - he had to enlist so we could get

health care because my COBRA policy ran out) and I don't even have a GI

doctor. I know it sounds risky, but I was diagnosed the week after we got

married and it made me totally reevaluate my life and I knew that I was

going to have to take risks to reduce stress, etc., because at that time,

everyone was telling me that they couldn't do anything for me and all I

could do was wait to die. So we decided to live like I was about to die and

the change in our lifestyle I think healed me in a spiritual and emotional

way that has led to better physical health. I know that sounds really

flaky/new age-y but I don't really know of any better way to explain it. At

the time of the dx I was a fulltime student working two fulltime jobs and it

was kind of like stress related problems, who me? so that is my whole

illness story so far. It's kind of funny that it took getting so sick that

I couldn't lift my school books or stay awake more than 6 hours a day to

make me wake up and realize that there were things in life more important

than just getting by and making good grades.

I am really glad I have found this list because the first day of reading

posts I was jumping up and down yelling to my husband " ! There are

people on this list who have lived years and years and years with this who

are still doing well! " So you are already giving me hope. I think that the

bad info. I have gotten has been as toxic to me as the disease in some

ways.

But overall, getting sick physically really made me heal my life and helped

me become more mentally healthy and I have to say that if it shortens my

life it will definitely be worth it, you know what I mean?

ok, enough crunchy granola ramblings for one day! I hope I haven't just

scared everybody off!

layne

>From: nordgren1@...

>Reply-To:

>To:

>Subject: Re: introducing myself

>Date: Thu, 22 Mar 2001 11:10:08 EST

>

>Welcome Layne!

> Glad you found this wonderful group of caring and supportive people.

>As

> said no questions are dumb - just ask and hopefully someone will have

>an answer.

> I don't have a j-pouch but did have UC with an ostomy done when I was

>17.

> As you can see from my signature a continent ostomy was done 7 years ago.

>I like it much better than the standard ostomy.

> What area of the world are you from? Tell us a little more about

>yourself. You might try putting the information on the signature like some

>of the group have done - saves a lot of typing.

>

>Blessings,

>Barby

>married 21 years, mom of 5 sons- KS

>UC - dx in 1965 (11yo), total proctocolectomy with ileoostomy 1972, BCIR

>(continent ileoostomy)1994

>PSC- dx in 1999

>nordgren1@...

_________________________________________________________________

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[Guest guest]

Dear Layne,

I noticed you said you lived in Germany, and your husband was active duty Army. My husband is also active duty with 23yrs, and too many moves to count behind us. Our first duty station as newlyweds was Germany. Two of our children were born there, and I left pregnant! They say you either leave with a cuckoo clock or a baby. I'm concerned that you are not seeing a specialist. Something is wrong if you're not. You should get hooked up immediately with a GI doc...if you're not sure of the right direction to take have your husband talk to his 1st Sgt., and explain everything. They will get you on the right path to the right doctors. Also, are you registered in the "exceptional family member program"? This is very important. Again, have your husband discuss this with his chain of command. Don't let anyone tell you horror stories either about military doctors. Personally I cannot say enough for how quickly they got to the root of my son's problems and left no stone unturned. Unfortunately he doesn't have that many years left that we can claim him as a dependent, and I worry about his health care after that. Oh well....get yourself a doctor and quick. If you have any questions about specifics write me back personally and I will help you anyway I can. The Chief of Gastroenterology at Walter Army Hospital is a friend of ours and if you can't get help, I can talk to him. Terry

[Guest guest]

Layne, I too, when diagnosed with psc, thought it was

the end of the line for me. I went to the internet to

search the disease and found nothing but doom and

gloom. Then, after my first flare up, I started going

to an on-line liver support group site, and from there

I found this location and it made all the difference

in the world to me. I too found hope and inspiration.

I too, live as though it were my last days, so as to

make the most of them. I pay ever so close attention

to the people I care about and the sunshine and

flowers and the rain.....forget the snow though!!

I find the sunlight helps me with the itching, but

living in Michigan, that is sometimes hard to come by,

so I resort to the tanning booths when I can't get the

light...and it helps.

You will find that most doctors don't know alot about

PSC, and we have to learn what we can and be advocates

for our own health and well-being. I have taken alot

of information from this support site and relayed it

to my doctor, and he listens and if it sounds

plausible, he works it in.

in Michigan

[Guest guest]

layne, i LOVED reading your self-introduction. you sound like an awesome

woman. welcome, sweetiepie, welcome. i just KNOW there are people in this

group who are going to do you (and, *ahem* your less-than-fully-informed and

your less-than-fully-informative doctors) a world of good. it is NOT

considered a " common " disease, after all.

take heart and know that YOU, as the patient ARE entitled to information...

as much as you feel you need! first things first -- inquire as to what kind

of j-pouch they gave you, and for goodness' sake, have them tell you what

stage your psc is in. KEEP ASKING QUESTIONS. if you cant think of what to

ask, we can help you do that. keep asking until you feel a level of

satisfaction. the squeaky wheel gets the grease.

maureen, age 46 -- wife of jim, age 47 (married 1975, one son, 23; two

daughters, 20 & 16); jim, UC dx'd '84 (now in remission); PSC dx'd '97;

waitlisted 8/00; takes actigall, folic acid, azulfidine; seemingly forever

non-beeping beeper status)

[Guest guest]

I am having problems with army doctors so far. They have given me some really bad treatment for my daughter and I am a little weary of them, but I also know that even doctors have bad days so I am trying not to get closed minded about it.

Layne,

Please don't stereotype Army doctors. Remember they graduate from the same medical schools as civilian doctors. They just get their education financed by the government in return for a committment. It is an extremely competitive selection process they go through to get accepted. Their residency and internship programs are as strict as any civilian doctor. What you may be experiencing as far as "bad doctoring" is because of the shortage of military doctors, hospitals and clinics often have to hire civilians doctors. If at any time you feel the service is second rate do not hesitate to take your complaints to the patient representative at the hospital. Also get your husband's chain of command involved if you're getting the run around. Terry ( Army wife for 23 years and still hanging in there!)

[Guest guest]

Layne,

Something else...I mentioned earlier to check into getting registered in the "Exceptional Family Member Program" This is for dependents that have various health and disability problems. If you are in the program it is taken into account when the decision is made for your husband's next duty assignment. They will try to do everything possible to assign him close to a facility that can treat you. Also, depending on the extent of the disability you are often times given priority on the housing list. You can make the "system" work for you if you are aware of all the help available.

Good luck.

[Guest guest]

I just finally asked my doctor on friday if I was ever going to see the GI

doctor and it turned out that the GI doctor has wanted to see me for quite a

while and my primary doctor just never got around to telling me. I am doing

really well so far so it has seemed urgent but I don't really like not

having a GI either. I am not on Actigall now even though I have been in the

past because I have no more symptoms off it than on. I will talk about that

with the GI guy as soon as I see him though. I am supposed to call on

monday to find out when my appointment is. I am going to have to go halfway

across the country to see him. I am having problems with army doctors so

far. They have given me some really bad treatment for my daughter and I am

a little weary of them, but I also know that even doctors have bad days so I

am trying not to get closed minded about it. It is a little hard though

because all of my past doctors were very personable and really enthusiastic

about alternative medicine and no one here seems to be like that. I am

considering seeing a homeopath in addition to the GI since there are a lot

here and they are very good. I know that I need to get more involved in my

treatment but have always been at a loss as to how to go about that but I am

just going to have to find a way.

layne

Car On Blocks

http://www.geocities.com/car_on_blocks

http://www.themestream.com/gspd_browse/author/view_author_info.gsp?auth_id=10114\

5

You bring a ladder and I'll get a box

Build our house out of bricks and blocks

When the snowbird flies and the honeybee comes

We'll feed our baby on honey in the comb

-Woody Guthrie

>From: jterry05@...

>Reply-To:

>To:

>Subject: Re: introducing myself

>Date: Sat, 24 Mar 2001 17:15:19 EST

>

>Dear Layne,

>I noticed you said you lived in Germany, and your husband was active duty

>Army. My husband is also active duty with 23yrs, and too many moves to

>count

>behind us. Our first duty station as newlyweds was Germany. Two of our

>children were born there, and I left pregnant! They say you either leave

>with

>a cuckoo clock or a baby. I'm concerned that you are not seeing a

>specialist.

>Something is wrong if you're not. You should get hooked up immediately with

>a

>GI doc...if you're not sure of the right direction to take have your

>husband

>talk to his 1st Sgt., and explain everything. They will get you on the

>right

>path to the right doctors. Also, are you registered in the " exceptional

>family member program " ? This is very important. Again, have your husband

>discuss this with his chain of command.

>Don't let anyone tell you horror stories either about military doctors.

>Personally I cannot say enough for how quickly they got to the root of my

>son's problems and left no stone unturned. Unfortunately he doesn't have

>that

>many years left that we can claim him as a dependent, and I worry about his

>health care after that. Oh well....get yourself a doctor and quick. If you

>have any questions about specifics write me back personally and I will help

>you anyway I can. The Chief of Gastroenterology at Walter Army

>Hospital

>is a friend of ours and if you can't get help, I can talk to him.

> Terry

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

" I know that I need to get more involved in my treatment but have always

been at a loss as to how to go about that but I am just going to have to

find a way. " <-- layne, i'm trusting that there are several great people

here in this group who can hopefully help you in that respect.

happy sunday,

maureen

[Guest guest]

" You can make the " system " work for you if you are aware of all the help

available. " <-- layne, it seems like julie's doing just that for you. and

straight off the bat! i was impressed reading her e-mails to you detailing

a suggested approach to the military re doctors, housing, special medical

consideration with future duty assignments, etc. is this group awesome or

what?!?!

have a beautiful day, everyone. :-)

maureen, age 46 -- wife of jim, age 47 (married 1975, one son, 23; two

daughters, 20 & 16); jim, UC dx'd '84 (now in remission); PSC dx'd '97;

waitlisted 8/00; takes actigall, folic acid, azulfidine; seemingly forever

non-beeping beeper status)

p.s. i think the worst may be over with all the head cold goo that went on

its merry way to my lungs... WOOHOO! :-) since jim indicated that as long

as i felt i'd be doing so much spastic coughing or frequently turning on the

nebulizer at night for my breathing (and wednesday night i overheated the

machine, it was used so continuously), that it would be better if i did NOT

sleep with him, because he'd rest easier and more soundly further away from

all that disruption. i always feel SO badly for jim and his quality of

sleep/rest, even if it's just my wheezing which happens to wake him up. (of

course, it was ME who made the offer, and all he did was agree, however i

have to admit it hurt how he agreed to my suggestion so readily. after all,

it IS my bed, too. and when i get sick, i like to be in my OWN bed, know

what i mean?) REALLY wanting to be sensitive to jim's own liver-illness

fatigue issues, as his wife and support person, i think this is the only

kind thing to do until i am all better, but i hate it.

what a hard call -- wanting to be near my husband, if nothing else for quiet

support and he so desperately needing sleep to help him have the energy to

face a new day (his energy seems to be declining; he's pretty much tired ALL

the time).

but of course the GOOD news is that last night, i had my best night in a

week: 4 hours of sleep, with only one breathing treatment and one coughing

episode. seems there's light at the end of the tunnel!

[Guest guest]

I am not stereotyping them because they are in the army. I have really

gotten bad treatment for my daughter that really made me mad. It shouldn't

take a week to look at an xray and say your kid has something stuck in her

lung. I just don't really respect that. And they aren't civilians here.

And it took a week to get my daughter in when she absolutely could not

breathe. Plus, knowing that I have psc and high-ish liver enzymes and that

the GI wants to see me, it took two months to actually get me the message.

After I had asked about this.

These are my actual experiences, not stereotypes.

But also, I have been living in houston for years and had really good

doctors there who were very into preventive and alternative medicine and I

know that I am not getting the same standard of care here and it really

irritates me.

I am going to talk to the GI about the EFMP hopefully soon. I think it may

end up getting us moved though because we are right now several hours away

from the only facility in this country where I can get care. I wish they

would just let me see a German dr. I have friends here who are seeing

german drs in town but it seems like they are only doing that with

gynecologists. Oh well, maybe if we do get moved, we might get nearer to

the post with a la leche league, which would be cool because I could

probably find some other attachment parents more easily there.

I just don't think that I should have to batter down the door for my dr to

realize that my treatment is important. I wouldn't go back to a civilian dr

like this but here I have no choice.

layne

>From: jterry05@...

>Reply-To:

>To:

>Subject: Re: introducing myself

>Date: Sun, 25 Mar 2001 09:07:20 EST

>

>In a message dated 3/25/01 12:54:34 PM !!!First Boot!!!,

>commiemommy@... writes:

>

>

> > I am having problems with army doctors so

> > far. They have given me some really bad treatment for my daughter and I

>am

> > a little weary of them, but I also know that even doctors have bad days

>so

> > I

> > am trying not to get closed minded about it.

>

>Layne,

>Please don't stereotype Army doctors. Remember they graduate from the same

>medical schools as civilian doctors. They just get their education financed

>by the government in return for a committment. It is an extremely

>competitive

>selection process they go through to get accepted. Their residency and

>internship programs are as strict as any civilian doctor. What you may be

>experiencing as far as " bad doctoring " is because of the shortage of

>military

>doctors, hospitals and clinics often have to hire civilians doctors. If at

>any time you feel the service is second rate do not hesitate to take your

>complaints to the patient representative at the hospital. Also get your

>husband's chain of command involved if you're getting the run around.

> Terry ( Army wife for 23 years and still hanging in there!)

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

>I wish they would just let me see a German dr. I have friends

>here who are seeing german drs in town

there is a German PSC organization..

anyone here still have their web address?