Hello

[Guest guest]

Heidi,

I'm here and receiving E-mail.

Janis

[Guest guest]

Try just plain warm water, sitz or tub, twenty minutes 2 times a day, blow

dry, and coat yourself with vaseline. Carry the vaseline with you so that you

can recoat if it wears off or itch/burn starts again. I think the soak/coat

is more responsible for my decrease in symptoms than the Elavil. I am mych

more uncomfortable if I don't take the time to do it morning and night.

Debbie

[Guest guest]

I'm new on here so forgive me if this isn't the right way to go about this.

I'll do my intro as soon as I learn how to! <g>

I have a question. I keep reading about applying Vaseline to the lip area.

Doesn't that cause bladder infections or hold in bacteria? Otherwise, it

sounds so soothing.

Lainey

[Guest guest]

Have done the Diflucan and the Aveeno - all to no effect. If anything, baking

soda in the bath water is better for me.

Drs are now telling me not to use anything - that doesn't solve the problem

either - but maybe it is not making it WORSE????

Does anyone know if direct air exposure is good for healing, or does it dry

even more?

Alice

[Guest guest]

Hello, My name is Kitty and I'm 32 years old and I live in North Carolina.

Yesterday I was diagnosed with vulvodynia. I've been " lurking " on this list

for several

months, but didn't want to introduce myself until I had a diagnosis.

I don't know how long I've had it, as a teenager I never liked tampons

because they hurt coming out. Almost 10 years when I married my husband sex

was " uncomfortable " . But we bought some lubrication, and that solved the

problem. But over the years the discomfort changed to pain and the pain

just kept getting worse. I mentioned it several times to doctors, and was

either told to use more lubrication, or I was given Metrogel to cure a

possible " overgrowth of normal bacteria " . I even went to a psychologist for

a while to fix " the problem is all in your head " . However, almost 2 years

ago after very gentle sex with lots of extra lubrication I found that I was

bleeding slightly. That's when I finally got stubborn and went back to the

doctor over and over. I know my problem was not yeast based since I had my

first yeast infection when I was 29 after surgery and lots of antibiotics.

I tried all sorts of creams, nystatin and Diflucan and citrus seed extract,

and the yeast elimination diet, and 150 mg of Elavil each night. None of it

helped.

Yesterday I went to Dr... Libby in Charlotte, NC. She diagnosed me

with vulvodynia, I had no bacteria or yeast, but I did have more than normal

" white pus cells " and lots of redness. She gave me 300mg per day

Clindamycin which is an antibiotic that acts as an anti-inflammatory,

Diflucan 150mg to take weekly so the antibiotic doesn't give me a yeast

infection, Neurotonin 1600 mg per day to try and stop nerve pain, and

Temovate ointment to stop the inflammation. I go back to her in a month.

I also finally learned that the white " film " that I thought was yeast was

dead skin cells. Apparently when you have inflammation the skin grows and

dies faster. Just like dandruff. Great--I have dandruff of the vulva:-(

Sorry this is so long, it's hard to squeeze years into a few lines.

Kitty

Kittyelder@...

[Guest guest]

Hello, My name is Kitty and I'm 32 years old and I live in North Carolina.

Yesterday I was diagnosed with vulvodynia. I've been " lurking " on this list

for several

months, but didn't want to introduce myself until I had a diagnosis.

I don't know how long I've had it, as a teenager I never liked tampons

because they hurt coming out. Almost 10 years when I married my husband sex

was " uncomfortable " . But we bought some lubrication, and that solved the

problem. But over the years the discomfort changed to pain and the pain

just kept getting worse. I mentioned it several times to doctors, and was

either told to use more lubrication, or I was given Metrogel to cure a

possible " overgrowth of normal bacteria " . I even went to a psychologist for

a while to fix " the problem is all in your head " . However, almost 2 years

ago after very gentle sex with lots of extra lubrication I found that I was

bleeding slightly. That's when I finally got stubborn and went back to the

doctor over and over. I know my problem was not yeast based since I had my

first yeast infection when I was 29 after surgery and lots of antibiotics.

I tried all sorts of creams, nystatin and Diflucan and citrus seed extract,

and the yeast elimination diet, and 150 mg of Elavil each night. None of it

helped.

Yesterday I went to Dr... Libby in Charlotte, NC. She diagnosed me

with vulvodynia, I had no bacteria or yeast, but I did have more than normal

" white pus cells " and lots of redness. She gave me 300mg per day

Clindamycin which is an antibiotic that acts as an anti-inflammatory,

Diflucan 150mg to take weekly so the antibiotic doesn't give me a yeast

infection, Neurotonin 1600 mg per day to try and stop nerve pain, and

Temovate ointment to stop the inflammation. I go back to her in a month.

I also finally learned that the white " film " that I thought was yeast was

dead skin cells. Apparently when you have inflammation the skin grows and

dies faster. Just like dandruff. Great--I have dandruff of the vulva:-(

Sorry this is so long, it's hard to squeeze years into a few lines.

Kitty

Kittyelder@...

[Guest guest]

Dear Kitty,

Thanks for explaining that white film, " dandruff " . I have been wondering what

that was and none of the doctors have been able to explain it. Some said it

was cream, but I knew I hadn't used a cream. It always appeared when my skin

felt drier.

Sandi

[Guest guest]

Kitty,

You don't ever have to apologize for having a long story as all of us

have the same kinds of stories, some longer than others because pouring out

the details is sort of therapeutic for some of us. I am 35, the mother of two

great kids (my son will be 8 on April 24 and my daughter will be 5 May 17th),

and I have vulvodynia, vulvar vestibulitis with pain on contact, pudendal

neuralgia (nerve damage/pain), interstitial cystitis, am post hysterectomy for

severe endometriosis, and have many of the symptoms of fibromyalgia but have

not yet been diagnosed. I have tried Elavil and temovate(colbetasol is the

generic). The Elavil caused weight gain, dry, sore mouth, severe exhaustion,

and irritability. It did control the burning and itching but I was still

sensitive to touch in the vestibule. The temovate burned so much I could not

tolerate it. I have not had any experience with neurotonin but I know that

some of the other ladies on the list have. I have just finished weaning off

of the Elavil and am seeing my regular gynecologist next Thursday to start on

Paxil (a different type of antidepressant than Elavil). I had some success

with Paxil last year but did not stay on it because I wanted to be healthy and

medication free. Unfortunately it was not possible!

Welcome to our online information and support exchange. I am sorry that

you too are suffering and so need to be here. I hope we can help you to cope

with this frustrating illness through information sharing and support.

Deb at DLitzfletc@...

[Guest guest]

I just wanted to share my website with you all, Deb and i were talking

and she wanted to see pics of my granddaughter so i thought i would just

send the whole site. She is on the family page. So are the rest of my

babies.

Thanks and hope all of you are doing okay, oh by the way if you have any

prayer request just type them in where it is requested

Carolyn or tendersoulinnc on AOL messenger

http://members.tripod.com/~c.hammonds/carolynsworld.html

[Guest guest]

Welcome ,

Glad you found us, sorry you and have to deal with PSC at such a young age. We have several members in your age bracket as well as mom's (grandmoms) like me. You should be able get your questions answered as well as emotions supported, we have a very deversified group. Would you please make yourself a signature that includes something descriptive as we have a couple of other s in the group. Something like my signature.

Peg, wife of Phil(57), UC 30 yrs, dx PSC 12/98, listed 2/2000-status 3, live in So. Calif.

hello

hello,

my name is . I am 19 years old. I live in st.louis, mo. I do not have psc but my boyfriend does. his name is . I have known him for about 4 years I have been together with him for 7-8 months. he was diagnosed with psc 2 months ago. he was sick for a few months before that but they didn't know what he had. they made the diagnoses when they put him in the hospital to do many horrible test including taking out bone marrow. he is stage 4. he has ulcerative colitis, he also has the veins in his throat, he had a infection that he is now rotating between cipro and augmenton every 2 weeks. he is also taking a ton of other medicines. he gets really bad pains in his side and his back. he used to itch terrible, leaves sores all over his arms and legs, they put a stent one of his bile ducts which helped the itching. we live together and work together, he comes to work when he feels good enough to, he missed a month and a half when this all first started happening, which wasn't long ago at all. I love him very much and its hard seeing him sick. I had a father that I lost to hep c. my father was going to get a liver transplant but they found out he had pulmonary hypertension and needed a new heart a lungs as well. he died when I was 15. well, hello everyone.

[Guest guest]

Welcome ,

Glad you found us, sorry you and have to deal with PSC at such a young age. We have several members in your age bracket as well as mom's (grandmoms) like me. You should be able get your questions answered as well as emotions supported, we have a very deversified group. Would you please make yourself a signature that includes something descriptive as we have a couple of other s in the group. Something like my signature.

Peg, wife of Phil(57), UC 30 yrs, dx PSC 12/98, listed 2/2000-status 3, live in So. Calif.

hello

hello,

my name is . I am 19 years old. I live in st.louis, mo. I do not have psc but my boyfriend does. his name is . I have known him for about 4 years I have been together with him for 7-8 months. he was diagnosed with psc 2 months ago. he was sick for a few months before that but they didn't know what he had. they made the diagnoses when they put him in the hospital to do many horrible test including taking out bone marrow. he is stage 4. he has ulcerative colitis, he also has the veins in his throat, he had a infection that he is now rotating between cipro and augmenton every 2 weeks. he is also taking a ton of other medicines. he gets really bad pains in his side and his back. he used to itch terrible, leaves sores all over his arms and legs, they put a stent one of his bile ducts which helped the itching. we live together and work together, he comes to work when he feels good enough to, he missed a month and a half when this all first started happening, which wasn't long ago at all. I love him very much and its hard seeing him sick. I had a father that I lost to hep c. my father was going to get a liver transplant but they found out he had pulmonary hypertension and needed a new heart a lungs as well. he died when I was 15. well, hello everyone.

[Guest guest]

Hi ,

To answer your question about length of time to get on the list. Sometimes it can take quite awhile because there are a lot of test that have to be taken. They make sure everything else is working right and if it isn't they fix it before listing. When Phil was going through the process he took months. I'm hoping that will get past this and feel better like Phil did but he may be more advanced in the disease. When Phil had a bad infection he was much in the same boat as is now but came through it and a few more infections then went a whole year before he had another. I can understand what you are going through because when Phil was hospitalized for the 10 days the first time I was exhausted and I didn't have to work because we were on Christmas vacation. It's impossible to work and keep up. Fortunately we have good support from our church and I was able to make sure he had enough visitors. He's finally used to my not spending a lot of time there when I'm working. But the other infections following the first one weren't near as bad and he didn't feel bad for very long once he got on the antibiotics. Then like I said he had a long period of time he was infection free and just had to deal with fatiguing easily. I'll keep you in my prayers.

Phil also lost a lot when he was real sick but has put that plus some back on.

Peg, wife of Phil (57), UC 30 years, dx PSC 12/98, listed-status 3-UCLA-2/2000, living Los Angeles suburbs, CA

[Guest guest]

Hi Debbie, I am Sharon and I have had Type I for 27 years also. I am having more problems now than when I didn't take such good care of myself. It seems to get harder every day. I am termed a brittle diabetic. I may not converse with the group a lot, but i read everybody's emails that are sent. Welcome and hope we can all help or learn from you. Sincerely, Sharon

[Guest guest]

Hi,

I too just joined the group yesterday and am type I, found out in 1997, at

the age of 25, when I lost about 40lbs in 2 weeks. Went to hospital and my

level was about 700, I was there almost a week. It's good to know there's

some type I's out there.

Ian

hello

Hi!

I just joined the group. My name is Debbie and I have type 1 diabetes and

have had for 27 years. Is there other type 1s on the list? Most lists I have

visited have mostly 2s. I hope to get to know all of you and maybe make some

friends.

Debbie

[Guest guest]

When I listen to you all it seems like everything I knew about diabetes that I have learned over the last 27 years is not true. Like this one. I was taught that type 1s are thin and not overweight. That is one of the characteristics that tell the two apart. Among many others. Another thing being type 1 1/2 ? You are 1 or 2. There are many different types of 2. But you are either 1 or 2. Medicare distinguishes between the two in what they will and will not cover. I don't know if anyone here is of that age. I am not but try to keep up with the way things keep changing.

Debbie

Hi,I too just joined the group yesterday and am type I, found out in 1997, atthe age of 25, when I lost about 40lbs in 2 weeks. Went to hospital and mylevel was about 700, I was there almost a week. It's good to know there'ssome type I's out there.Ian helloHi! I just joined the group. My name is Debbie and I have type 1 diabetes andhave had for 27 years. Is there other type 1s on the list? Most lists I havevisited have mostly 2s. I hope to get to know all of you and maybe make somefriends.Debbie

[Guest guest]

As i said earlier I have Type I for 27 years. I have never been "thin". The only time I can ever remember being even close to thin was when I was first diag-

nosed at the age of eleven. I now have hypothyroidism, high blood pressure,

acute edema, depression, sarcoidosis and am missing several vitamins and minerals in my system. I was healthy for the first eleven years of my life, then

as my mother constantly reminds me it's been downhill since then. I did okay until I got pregnant the first of my two sons. The diabetes has gotten even worse. I feel like a real horrible person because my youngest, Josh, who is my forever saviour, heard me tell someone that after their births I just couldn't seem to keep things under control. He put his arms around my neck and said,

"mommy, why did you have us if we've caused your health to get so bad? If

you hadn't had us you would still be healthy and able to do things without help." How do you respond to something like that? This was almost a week ago and I am sitting here in tears. I am on Prednisone for the sarcoidosis and P

prozac for the depression so that doesn't help with the guilt. Does anyone have any suggestions as to how I can reassure my precious son that I wouldn't trade being his and CJ's mom for all of the perfect health in the world. I have told him this but he has been kind of distant since he overheard this. I would love to be able to retract that statement. Of all of the things I have ever regretted saying to anybody that is the one I would truly love to retract. Sorry,

to be so long winded. I don't go anywhere or see anybody so I don't get to get

things off my chest like this. Thank you Group for all of the info and support that you have provided. Sharon R.

[Guest guest]

Hi Kerri- I am told that a brittle diabetic is one that has a hard time keeping blood

sugars under control. My blood sugar charts look like a rollercoaster ride at the fair.

I range anywhere from 36 to 579 at times. I am the world's worst diabetic. i stay

away from junk and sugar. i take my meds. i can't say i follow a diet because i usu-

ally eat one FULL meal a day and that is supper with my children. i don't exercise the way that i should. i have arthritis really bad on top of all of the other stuff i listed earlier. My dr. terms me a med student's dream patient or nightmare whichever way

you want to look at it. Anyway, it is pretty bizzare and nerve racking. One time a system is working really well for you and all of a sudden you start all over again because it has all gone haywire. SHARON

[Guest guest]

Hi a- I too am not much to post, but have learned alot just by reading what others post. You are only the second brittle diabetic I've heard of.

Tell me it's not a pain?!!! Can't even be spontaneous because of the bloodsugars. It's not as easy to

control the diabetes when you're brittle before it has control over you and your life. Am I right. I just wish there was as much support for Type I's as there seems to be

for Type II's. It seems to me that Type I diabetes is the minority of the two. Even though I knew in my heart that there were other "Brits" out there it is nice to hear from one. Keep posting. SHARON R.

[Guest guest]

That is not always the case... I am a type 1 and was

once thin but because endochrine disorders can cause

tohter things to go sour I had a thyroid go kerplewie

and I gained weight. I have to work hard to keep it

off.

--- Debbie wrote:

>

> When I listen to you all it seems like everything

> I knew about diabetes that I have learned over the

> last 27 years is not true. Like this one. I was

> taught that type 1s are thin and not overweight.

> That is one of the characteristics that tell the two

> apart. Among many others. Another thing being type 1

> 1/2 ? You are 1 or 2. There are many different types

> of 2. But you are either 1 or 2. Medicare

> distinguishes between the two in what they will and

> will not cover. I don't know if anyone here is of

> that age. I am not but try to keep up with the way

> things keep changing.

__________________________________________________

[Guest guest]

Prunty wrote:

That is not always the case... I am a type 1 and wasonce thin but because endochrine disorders can causetohter things to go sour I had a thyroid go kerplewieand I gained weight. I have to work hard to keep itoff.Very interesting, I learn something every day, I too thought type 1's were thin.

I don't fit the mold either, I'm a type 2 which makes me heavy, but I have crohns disease and ileostomy, the usual would be very thin, but I'm not, many a GI dr is surprised I have a weight problem, but I thnk thats the dm2 for me.

I do insulin only as oral meds just don't work for me.

carol

[Guest guest]

But barring other diseases type 1 is thin and type 2 is overweight. You were thin because you were type 1 and the other stuff put the weight on. That is what I was talking about. My thyroid and liver are about the only organs in my body that work right. But I am keeping my fingers crossed that I can maintain my health at the point I am at and not have anymore deteriation. That don't look like it is spelled right. Oh well.

Debbie

That is not always the case... I am a type 1 and wasonce thin but because endochrine disorders can causetohter things to go sour I had a thyroid go kerplewieand I gained weight. I have to work hard to keep itoff.Very interesting, I learn something every day, I too thought type 1's were thin.

I don't fit the mold either, I'm a type 2 which makes me heavy, but I have crohns disease and ileostomy, the usual would be very thin, but I'm not, many a GI dr is surprised I have a weight problem, but I thnk thats the dm2 for me.

I do insulin only as oral meds just don't work for me.

carol

[Guest guest]

Whats a brittle diabetic if I may ask.

Kerry

Re: hello

Hi Sharon, It is kind of hard to find someone who is type 1. Just about everyone is type 2. I was19 almost 20 when I found out. The reason you have more problems now is because you did not take good care then and also it has an accumulative effect. I believe it is like after 20 years it is the eyes then a couple years later it is the kidneys. Neuropathy kind of depends. But most stuff kind of sets in later. So keep taking good care and don't let the side effects get to you. I am also termed a brittle diabetic. After so long my doc says you get burned out and just to muddle through and you will get to the light at the other end. I burned out and am finding the light. What kind of problems are you having?

Debbie

Hi Debbie, I am Sharon and I have had Type I for 27 years also. I am having more problems now than when I didn't take such good care of myself. It seems to get harder every day. I am termed a brittle diabetic. I may not converse with the group a lot, but i read everybody's emails that are sent. Welcome and hope we can all help or learn from you. Sincerely, Sharon

[Guest guest]

BY CALLING JOSHUA MY FOREVER SAVIOUR I MEAN THIS: HE WORRIES MORE ABOUT ME THAN HE DOES HIMSELF SOME DAYS. HE IS THE ONE WHO AT THE DROP OF A HAT NO MATTER WHAT HE IS DOING IF I SAY I

NEED SOMETHING FOR LOW SUGAR HE IS ON IT. I THINK SOMEDAYS HE IS THE PARENT COMFORTING ME AS THE CHILD. THIS IS SOMETHING THAT

HE HAS COME UP WITH ON HIS OWN. I HAVE NEVER ASKED HIM OR HIS BROTHER TO DO THINGS FOR ME THAT I CAN DO MYSELF. JOSHUA JUST

SEEMS TO BE IN TOTAL SYNC WITH ME AND HOW I FEEL AND THINGS LIKE THAT. HE SWEARS THAT WHEN HE GROWS UP HE IS GOING TO AT LEAST LIVE IN THE SAME NEIGHBORHOOD THAT HIS PARENTS DO SO THAT HE CAN TAKE CARE OF US AS WE GROW OLD. HE IS THE SWEETEST CHILD,

BUT DON'T GET ME WRONG HE HAS HIS "LITTLE DEVIL" DAYS.

THANKS FOR THE INPUT. SHARON R.

[Guest guest]

Hi Sharon,

I'm so sorry your son heard you make that statement. You need to try and make it clear to him that it was not HIM that caused the problem, it was simply being pregnant. Explain to him that pregnancy causes problems to diabetics and that the doctors try to help them control that. Sometimes they can and sometimes they can't, but that having your children was so important to you that you wanted to take those risks and that you aren't sorry that you did it, although you wish you didn't have those problems now that you wouldn't trade your children for that.

The bottom line is that he feels responsible right now for your problems and needs to understand that it isn't his fault and if he realizes that you chose to take that risk he'll feel better. Children are very resiliant. He'll come through this fine as long as he understands he isn't responsible.

You say Josh is your "forever saviour"? What do you mean by that? If your kids have helped you cope with diabetes, make a list of all they do to help you and point out to them how much help they are to you and what you'd be missing if you didn't have them.

Put things into a positive light for them and you will all feel better.

Meenie

PS: have you read Bernstein's "Diabetes Solutions"? He is a type I diabetic and became a doctor through finding ways to control his diabetes better, even overcoming many complications - or at least making them better - with learning ways towards better control.

Meenie

As i said earlier I have Type I for 27 years. I have never been "thin". The only time I can ever remember being even close to thin was when I was first diag- nosed at the age of eleven. I now have hypothyroidism, high blood pressure, acute edema, depression, sarcoidosis and am missing several vitamins and minerals in my system. I was healthy for the first eleven years of my life, then as my mother constantly reminds me it's been downhill since then. I did okay until I got pregnant the first of my two sons. The diabetes has gotten even worse. I feel like a real horrible person because my youngest, Josh, who is my forever saviour, heard me tell someone that after their births I just couldn't seem to keep things under control. He put his arms around my neck and said, "mommy, why did you have us if we've caused your health to get so bad? If you hadn't had us you would still be healthy and able to do things without help." How do you respond to something like that? This was almost a week ago and I am sitting here in tears. I am on Prednisone for the sarcoidosis and P prozac for the depression so that doesn't help with the guilt. Does anyone have any suggestions as to how I can reassure my precious son that I wouldn't trade being his and CJ's mom for all of the perfect health in the world. I have told him this but he has been kind of distant since he overheard this. I would love to be able to retract that statement. Of all of the things I have ever regretted saying to anybody that is the one I would truly love to retract. Sorry, to be so long winded. I don't go anywhere or see anybody so I don't get to get things off my chest like this. Thank you Group for all of the info and support that you have provided. Sharon R.

[Guest guest]

Since this came up I went through my mind of all the type 1s I have known and everyone was thin. Last year when my kidneys decided to stop functioning at 100% I gained 60 pounds from fluid retention. I am on water pills and have lost 20 of them. I did not realize this happened but I guess that is one tell tale sign that your kidneys aren't functioning properly. Is water weight gain and swelling.

Debbie

Hmm, well, I'm sitting here thinking about this and realized that every type I diabetic I've known has been overweight. Not that is by any means a "study" LOL, but it just occured to me.

The first type I I knew was a girl waaay back when I was in elementary school. She was quite overweight although as a teen she managed to thin down somewhat, she was still what one would consider "overweight".

My nephew had a child who was diabetic and he was a chubby little fellow. Very cute and very active, but overweight. Tragically he passed away at 4 years of age. He got the flu, they couldn't control his bg's and insulin levels and he went into DKA, then a coma. His brain swelled and he was put on a vent, but it was soon determined that he was brain dead This was about 15 years ago.

I work with a young woman who is a type I. And she is overweight. Not horribly so, not someone you'd look at and say she was fat, but she's probably about 25 - 30 lbs overweight.

Meenie