Re:Fatigue and the PSC Conference (answer to Margie)

[Guest guest]

Sandi, thanks for your nice message encouraging me and others

suffering from the fatigue of PSC and/or sleep cycle disturbance to

attend the conference in Chicago. I just looked up the distance from

my daughter's new home in Aurora IL to Chicago and it's 40 miles, so

it would probably be best if I attend to stay at the hotel where the

conference is being held. However, I cannot attend unless my husband

Jim is also along because he has severe neurological problems and

cannot be left alone. I think I had this problem when the last PSC

conference was being held, that he refused to attend. Just a few hours

ago, he fell flat on his face going to the bathroom without using his

walker. His glasses cut into his nose and caused a lot of bleeding but

no need for stitches. I dialed 911 and a huge fire truck and a

hospital ambulance arrived within a few minutes to get him off the

floor and treat the cut on his nose. They know the way to our house

because of his all too often falls, but everyone is always helpful and

professional. Anyway, I'd love to attend but can't leave Jim home

alone, plus I need him with me in case I have a seizure.

I think I told everyone I was having seizures after starting on Asacol

for very mild ulcerative colitis (no symptoms at all, just discovered

during a routine colonoscopy by my GI) but now that my colon is

perfectly normal two years later according to the same GI (also

treating my PSC), he said I don't need Asacol any more. Hopefully I

won't have any more seizures. However, I will continue taking my anti-

seizure medicines even though they have not worked but also try to

keep my stress level and ammonia level (from the liver disease) under

control. I am taking Xifaxan 2 tablets 3 times daily for the ammonia

level which causes the brain fog (hepatic encephalopathy), and it works.

I'll try to attend the conference even though my husband is so

negative about it.

Margie in MO

PSC DX 3/99

[Guest guest]

Sandi, thanks for your nice message encouraging me and others

suffering from the fatigue of PSC and/or sleep cycle disturbance to

attend the conference in Chicago. I just looked up the distance from

my daughter's new home in Aurora IL to Chicago and it's 40 miles, so

it would probably be best if I attend to stay at the hotel where the

conference is being held. However, I cannot attend unless my husband

Jim is also along because he has severe neurological problems and

cannot be left alone. I think I had this problem when the last PSC

conference was being held, that he refused to attend. Just a few hours

ago, he fell flat on his face going to the bathroom without using his

walker. His glasses cut into his nose and caused a lot of bleeding but

no need for stitches. I dialed 911 and a huge fire truck and a

hospital ambulance arrived within a few minutes to get him off the

floor and treat the cut on his nose. They know the way to our house

because of his all too often falls, but everyone is always helpful and

professional. Anyway, I'd love to attend but can't leave Jim home

alone, plus I need him with me in case I have a seizure.

I think I told everyone I was having seizures after starting on Asacol

for very mild ulcerative colitis (no symptoms at all, just discovered

during a routine colonoscopy by my GI) but now that my colon is

perfectly normal two years later according to the same GI (also

treating my PSC), he said I don't need Asacol any more. Hopefully I

won't have any more seizures. However, I will continue taking my anti-

seizure medicines even though they have not worked but also try to

keep my stress level and ammonia level (from the liver disease) under

control. I am taking Xifaxan 2 tablets 3 times daily for the ammonia

level which causes the brain fog (hepatic encephalopathy), and it works.

I'll try to attend the conference even though my husband is so

negative about it.

Margie in MO

PSC DX 3/99

[Guest guest]

Sandi, thanks for your nice message encouraging me and others

suffering from the fatigue of PSC and/or sleep cycle disturbance to

attend the conference in Chicago. I just looked up the distance from

my daughter's new home in Aurora IL to Chicago and it's 40 miles, so

it would probably be best if I attend to stay at the hotel where the

conference is being held. However, I cannot attend unless my husband

Jim is also along because he has severe neurological problems and

cannot be left alone. I think I had this problem when the last PSC

conference was being held, that he refused to attend. Just a few hours

ago, he fell flat on his face going to the bathroom without using his

walker. His glasses cut into his nose and caused a lot of bleeding but

no need for stitches. I dialed 911 and a huge fire truck and a

hospital ambulance arrived within a few minutes to get him off the

floor and treat the cut on his nose. They know the way to our house

because of his all too often falls, but everyone is always helpful and

professional. Anyway, I'd love to attend but can't leave Jim home

alone, plus I need him with me in case I have a seizure.

I think I told everyone I was having seizures after starting on Asacol

for very mild ulcerative colitis (no symptoms at all, just discovered

during a routine colonoscopy by my GI) but now that my colon is

perfectly normal two years later according to the same GI (also

treating my PSC), he said I don't need Asacol any more. Hopefully I

won't have any more seizures. However, I will continue taking my anti-

seizure medicines even though they have not worked but also try to

keep my stress level and ammonia level (from the liver disease) under

control. I am taking Xifaxan 2 tablets 3 times daily for the ammonia

level which causes the brain fog (hepatic encephalopathy), and it works.

I'll try to attend the conference even though my husband is so

negative about it.

Margie in MO

PSC DX 3/99

[Guest guest]

Margie,

Hi! It sounds like you're having a bit of a rough time. I'm glad to hear your

husband is okay after his spill though! I do hope you can make the conference

and I'm sorry to hear your family is a bit negative about it. Do you think

perhaps your daughter could come and stay in the hotel room or a hotel room next

to you and your husband? That way while you're at the conference they would be

near enough to you if you needed them and your husband wouldn't be alone. Of

course, if you can't make it, we'd all understand, but we'd love to meet you!

Good luck with the anti-seizure medications. I sure hope they start doing their

job and keep you healthy and seizure free!

Sandi in VA/Rochester

[Guest guest]

Margie,

Hi! It sounds like you're having a bit of a rough time. I'm glad to hear your

husband is okay after his spill though! I do hope you can make the conference

and I'm sorry to hear your family is a bit negative about it. Do you think

perhaps your daughter could come and stay in the hotel room or a hotel room next

to you and your husband? That way while you're at the conference they would be

near enough to you if you needed them and your husband wouldn't be alone. Of

course, if you can't make it, we'd all understand, but we'd love to meet you!

Good luck with the anti-seizure medications. I sure hope they start doing their

job and keep you healthy and seizure free!

Sandi in VA/Rochester

[Guest guest]

Margie,

Hi! It sounds like you're having a bit of a rough time. I'm glad to hear your

husband is okay after his spill though! I do hope you can make the conference

and I'm sorry to hear your family is a bit negative about it. Do you think

perhaps your daughter could come and stay in the hotel room or a hotel room next

to you and your husband? That way while you're at the conference they would be

near enough to you if you needed them and your husband wouldn't be alone. Of

course, if you can't make it, we'd all understand, but we'd love to meet you!

Good luck with the anti-seizure medications. I sure hope they start doing their

job and keep you healthy and seizure free!

Sandi in VA/Rochester

[Guest guest]

Margie,

I'm so sorry to hear of all your problems. I was wondering if you are listed

yet? It would seem to me that if you aren't you should be. Take care, Cheryl ID

Re:Fatigue and the PSC Conference (answer to Margie)

> .

>

> I'll try to attend the conference even though my husband is so

> negative about it.

>

> Margie in MO

> PSC DX 3/99

>

>