Re: Introduction - new parent

[Guest guest]

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Hi! You've probably seen a number of posts for PSC support and I know you'll receive a number of replies to your email. Weekends tend to be quiet though. There are a number of young adults and parents who participate. My son, is 18 also and a freshman. His first year, which had PSC and UC diagnosed at the same time, was as a sophomore in high school - and yes, that year was extremely difficult.

The young adults have a Facebook site that they participate on (so do adults, but I haven't yet figured it out!)! My son, I don't think, has participated on the site. Someday, I hope he will go to the conference, as the friendships and information are so great.

I have found this group to be so helpful, supportive and a wealth of good information from some very knowledgeable people.

Wish you didn't have to join either, but it's so helpful to not be alone.

Joanne H

(, Ca., mom of Joe, 18, UC/PSC 2-06; JRA 98)

Hi - glad to have found the group I wish I didn't need to join.My 18 year old daughter (freshman at a very tough college) was diagnosed with PSC on Tuesday (small bile duct only - at least for the moment). ... I'm hoping for the same kind of support and information from this group - and we (parents) will be in Chicago at the annual conference on PSC, so I hope to meet many of you in person.

..

[Guest guest]

-

Hi! You've probably seen a number of posts for PSC support and I know you'll receive a number of replies to your email. Weekends tend to be quiet though. There are a number of young adults and parents who participate. My son, is 18 also and a freshman. His first year, which had PSC and UC diagnosed at the same time, was as a sophomore in high school - and yes, that year was extremely difficult.

The young adults have a Facebook site that they participate on (so do adults, but I haven't yet figured it out!)! My son, I don't think, has participated on the site. Someday, I hope he will go to the conference, as the friendships and information are so great.

I have found this group to be so helpful, supportive and a wealth of good information from some very knowledgeable people.

Wish you didn't have to join either, but it's so helpful to not be alone.

Joanne H

(, Ca., mom of Joe, 18, UC/PSC 2-06; JRA 98)

Hi - glad to have found the group I wish I didn't need to join.My 18 year old daughter (freshman at a very tough college) was diagnosed with PSC on Tuesday (small bile duct only - at least for the moment). ... I'm hoping for the same kind of support and information from this group - and we (parents) will be in Chicago at the annual conference on PSC, so I hope to meet many of you in person.

..

[Guest guest]

-

Hi! You've probably seen a number of posts for PSC support and I know you'll receive a number of replies to your email. Weekends tend to be quiet though. There are a number of young adults and parents who participate. My son, is 18 also and a freshman. His first year, which had PSC and UC diagnosed at the same time, was as a sophomore in high school - and yes, that year was extremely difficult.

The young adults have a Facebook site that they participate on (so do adults, but I haven't yet figured it out!)! My son, I don't think, has participated on the site. Someday, I hope he will go to the conference, as the friendships and information are so great.

I have found this group to be so helpful, supportive and a wealth of good information from some very knowledgeable people.

Wish you didn't have to join either, but it's so helpful to not be alone.

Joanne H

(, Ca., mom of Joe, 18, UC/PSC 2-06; JRA 98)

Hi - glad to have found the group I wish I didn't need to join.My 18 year old daughter (freshman at a very tough college) was diagnosed with PSC on Tuesday (small bile duct only - at least for the moment). ... I'm hoping for the same kind of support and information from this group - and we (parents) will be in Chicago at the annual conference on PSC, so I hope to meet many of you in person.

..

[Guest guest]

Thanks for the reply. I figured weekends would be quiet - they have been on most groups I've participated in.Good to know about the facebook group - my daughter is pretty active on facebook. I am, as well. When she started it was a way to keep track of her online activities to help her learn safe habits without peering over her shoulder all the time or moving the computer into the living room. Now, we use it to communicate, to some extent. Joining the group may be more public than she wants to be yet, but she may get there (she didn't tell her small group in one class that the reason she couldn't finish the paper on Thursday because she was in the ER...)Does your son need/has he been offered accommodations at college? My daughter is struggling with 14 hours (12-16 is full time at her school), and needs to drop

a 3 hour class and pick up a 1 hour class in order to stay full time. She is really resistant to the idea that she is asking for "special favors." She's missed 4 days of classes just for medical tests/visits to the ER (not counting all the times she has had to go to the clinic to have blood drawn), is so exhausted all the time she can't think straight (on top of the brain fog the liver enzymes were creating), and had a bunch of viruses that kept her from having a break during January when she was finishing her two incompletes from last semester and doing a winter term project - but she still thinks she should be able to do it all - or that going up in flames would be preferable to asking for help. The school is quite willing to work with her - but she doesn't think it would be fair to ask for different treatment. (Not fair, as far as I'm concerned is living with UC since she was 3 and now being diagnosed with PSC just when she is

just starting her grown-up life...any help she gets is an inadequate attempt to level the playing field in one corner of her life.)Subject: RE: Introduction - new parentTo: Date: Saturday, March 21, 2009, 1:59 PM

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Hi! You've probably seen a number of posts for PSC support and I know you'll receive a number of replies to your email. Weekends tend to be quiet though.

The young adults have a Facebook site that they participate on (so do adults, but I haven't yet figured it out!)!

..

[Guest guest]

Thanks for the reply. I figured weekends would be quiet - they have been on most groups I've participated in.Good to know about the facebook group - my daughter is pretty active on facebook. I am, as well. When she started it was a way to keep track of her online activities to help her learn safe habits without peering over her shoulder all the time or moving the computer into the living room. Now, we use it to communicate, to some extent. Joining the group may be more public than she wants to be yet, but she may get there (she didn't tell her small group in one class that the reason she couldn't finish the paper on Thursday because she was in the ER...)Does your son need/has he been offered accommodations at college? My daughter is struggling with 14 hours (12-16 is full time at her school), and needs to drop

a 3 hour class and pick up a 1 hour class in order to stay full time. She is really resistant to the idea that she is asking for "special favors." She's missed 4 days of classes just for medical tests/visits to the ER (not counting all the times she has had to go to the clinic to have blood drawn), is so exhausted all the time she can't think straight (on top of the brain fog the liver enzymes were creating), and had a bunch of viruses that kept her from having a break during January when she was finishing her two incompletes from last semester and doing a winter term project - but she still thinks she should be able to do it all - or that going up in flames would be preferable to asking for help. The school is quite willing to work with her - but she doesn't think it would be fair to ask for different treatment. (Not fair, as far as I'm concerned is living with UC since she was 3 and now being diagnosed with PSC just when she is

just starting her grown-up life...any help she gets is an inadequate attempt to level the playing field in one corner of her life.)Subject: RE: Introduction - new parentTo: Date: Saturday, March 21, 2009, 1:59 PM

-

Hi! You've probably seen a number of posts for PSC support and I know you'll receive a number of replies to your email. Weekends tend to be quiet though.

The young adults have a Facebook site that they participate on (so do adults, but I haven't yet figured it out!)!

..

[Guest guest]

,

I have PSC and am 46 so I'm not a lot of help with the being young and just finding out, but I am taking some college classes on line and also have a daughter who is a freshman in college and is away from home for the first time. My Dr. wanted me to go to Mayo and get evaluated and told me it would be between 3 and 6 months. The clinic called about two weeks later on a Monday and said I could be seen the following Monday. Since my son is a high school sophmore I didn't feel comfortable leaving him home alone so h came and stayed with . I texted my Professor and expalined what was going on and he was really accomadating and said I could get everything handled when I was able. h goes to college about 2 hours away so she also talked to her professors and they were really understanding also. I would suggest that she starts with her advisor to get some help. I know with just the regular Freshman

college stuff h has gotten a lot of good advice and input from hers. I couldn't imagine h dealing with PSC and all the stuff that goes with it on top of that. Your daughter must be quite a trooper!

To: Sent: Saturday, March 21, 2009 1:51:07 PMSubject: RE: Introduction - new parent

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[Guest guest]

,

I have PSC and am 46 so I'm not a lot of help with the being young and just finding out, but I am taking some college classes on line and also have a daughter who is a freshman in college and is away from home for the first time. My Dr. wanted me to go to Mayo and get evaluated and told me it would be between 3 and 6 months. The clinic called about two weeks later on a Monday and said I could be seen the following Monday. Since my son is a high school sophmore I didn't feel comfortable leaving him home alone so h came and stayed with . I texted my Professor and expalined what was going on and he was really accomadating and said I could get everything handled when I was able. h goes to college about 2 hours away so she also talked to her professors and they were really understanding also. I would suggest that she starts with her advisor to get some help. I know with just the regular Freshman

college stuff h has gotten a lot of good advice and input from hers. I couldn't imagine h dealing with PSC and all the stuff that goes with it on top of that. Your daughter must be quite a trooper!

To: Sent: Saturday, March 21, 2009 1:51:07 PMSubject: RE: Introduction - new parent

..

[Guest guest]

,

I have PSC and am 46 so I'm not a lot of help with the being young and just finding out, but I am taking some college classes on line and also have a daughter who is a freshman in college and is away from home for the first time. My Dr. wanted me to go to Mayo and get evaluated and told me it would be between 3 and 6 months. The clinic called about two weeks later on a Monday and said I could be seen the following Monday. Since my son is a high school sophmore I didn't feel comfortable leaving him home alone so h came and stayed with . I texted my Professor and expalined what was going on and he was really accomadating and said I could get everything handled when I was able. h goes to college about 2 hours away so she also talked to her professors and they were really understanding also. I would suggest that she starts with her advisor to get some help. I know with just the regular Freshman

college stuff h has gotten a lot of good advice and input from hers. I couldn't imagine h dealing with PSC and all the stuff that goes with it on top of that. Your daughter must be quite a trooper!

To: Sent: Saturday, March 21, 2009 1:51:07 PMSubject: RE: Introduction - new parent

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[Guest guest]

Thanks for the suggestions. Our problem is more on my daughter's end than the school's end. For some reason, she thinks its better to go down in a blaze of flames than to ask for help while she adjusts to a condition that people several times her age find difficult to manage and adjust to having. She's hooked in to the first year dean's office, as well as the disability access office (much to her chagrin), and will need to work with her advisor to swap the classes she probably needs to swap in order to make it through this semester.She is quite a trooper. When the brain fog hit at the end of last semester, she was afraid she was having mental health issues and dropped in to the student counseling services and had made an appointment to visit a local psychologist before she even talked to me about it (other than mentioning she

thought she was depressed). Even though it turned out to more likely have a physical cause we weren't aware of at the time, the fact that she had been so pro-active justified them granting her request for two incompletes, so she managed to finish first semester in reasonable shape.As to medical stuff - that child has already been through quite a bit, almost always in good spirits.Subject: Re: Introduction - new parentTo: Date: Saturday, March 21, 2009, 5:01 PM

I would suggest that she starts with her advisor to get some help. I know with just the regular Freshman

college stuff h has gotten a lot of good advice and input from hers. I couldn't imagine h dealing with PSC and all the stuff that goes with it on top of that. Your daughter must be quite a trooper!

From: Reeves <nlreeves (AT) yahoo (DOT) com>To: @ yahoogroups. comSent: Saturday, March 21, 2009 1:51:07 PMSubject: RE: Introduction - new parent

..

[Guest guest]

Thanks for the suggestions. Our problem is more on my daughter's end than the school's end. For some reason, she thinks its better to go down in a blaze of flames than to ask for help while she adjusts to a condition that people several times her age find difficult to manage and adjust to having. She's hooked in to the first year dean's office, as well as the disability access office (much to her chagrin), and will need to work with her advisor to swap the classes she probably needs to swap in order to make it through this semester.She is quite a trooper. When the brain fog hit at the end of last semester, she was afraid she was having mental health issues and dropped in to the student counseling services and had made an appointment to visit a local psychologist before she even talked to me about it (other than mentioning she

thought she was depressed). Even though it turned out to more likely have a physical cause we weren't aware of at the time, the fact that she had been so pro-active justified them granting her request for two incompletes, so she managed to finish first semester in reasonable shape.As to medical stuff - that child has already been through quite a bit, almost always in good spirits.Subject: Re: Introduction - new parentTo: Date: Saturday, March 21, 2009, 5:01 PM

I would suggest that she starts with her advisor to get some help. I know with just the regular Freshman

college stuff h has gotten a lot of good advice and input from hers. I couldn't imagine h dealing with PSC and all the stuff that goes with it on top of that. Your daughter must be quite a trooper!

From: Reeves <nlreeves (AT) yahoo (DOT) com>To: @ yahoogroups. comSent: Saturday, March 21, 2009 1:51:07 PMSubject: RE: Introduction - new parent

..

[Guest guest]

Thanks for the suggestions. Our problem is more on my daughter's end than the school's end. For some reason, she thinks its better to go down in a blaze of flames than to ask for help while she adjusts to a condition that people several times her age find difficult to manage and adjust to having. She's hooked in to the first year dean's office, as well as the disability access office (much to her chagrin), and will need to work with her advisor to swap the classes she probably needs to swap in order to make it through this semester.She is quite a trooper. When the brain fog hit at the end of last semester, she was afraid she was having mental health issues and dropped in to the student counseling services and had made an appointment to visit a local psychologist before she even talked to me about it (other than mentioning she

thought she was depressed). Even though it turned out to more likely have a physical cause we weren't aware of at the time, the fact that she had been so pro-active justified them granting her request for two incompletes, so she managed to finish first semester in reasonable shape.As to medical stuff - that child has already been through quite a bit, almost always in good spirits.Subject: Re: Introduction - new parentTo: Date: Saturday, March 21, 2009, 5:01 PM

I would suggest that she starts with her advisor to get some help. I know with just the regular Freshman

college stuff h has gotten a lot of good advice and input from hers. I couldn't imagine h dealing with PSC and all the stuff that goes with it on top of that. Your daughter must be quite a trooper!

From: Reeves <nlreeves (AT) yahoo (DOT) com>To: @ yahoogroups. comSent: Saturday, March 21, 2009 1:51:07 PMSubject: RE: Introduction - new parent

..

[Guest guest]

FYI If your daughter is getting college loans be sure the papers mention that the loans will be forgiven in the case of catastrophic illness. If she is eventually needs a liver transplant, the loans may be paid off for her. Hopefully she will live a long and successful life like many other people with PSC and liver transplants and will pay off the loans herself, however getting government guaranteed loans is like having a free insurance policy.

Takd Care

MizKit

Re: Introduction - new parent

Job Hunting? Start with the companies that posted job openings this week.

[Guest guest]

FYI If your daughter is getting college loans be sure the papers mention that the loans will be forgiven in the case of catastrophic illness. If she is eventually needs a liver transplant, the loans may be paid off for her. Hopefully she will live a long and successful life like many other people with PSC and liver transplants and will pay off the loans herself, however getting government guaranteed loans is like having a free insurance policy.

Takd Care

MizKit

Re: Introduction - new parent

Job Hunting? Start with the companies that posted job openings this week.

[Guest guest]

FYI If your daughter is getting college loans be sure the papers mention that the loans will be forgiven in the case of catastrophic illness. If she is eventually needs a liver transplant, the loans may be paid off for her. Hopefully she will live a long and successful life like many other people with PSC and liver transplants and will pay off the loans herself, however getting government guaranteed loans is like having a free insurance policy.

Takd Care

MizKit

Re: Introduction - new parent

Job Hunting? Start with the companies that posted job openings this week.

[Guest guest]

Thanks! This year we didn't take out loans. We were thinking of refinancing the house and rolling them into the mortgage for the next two years, since that gives us a slight tax advantage - but given her health conditions it may be better to have them in her own name (with a payoff for catastrophic illness payoff). For next year we also have to rethink student health insurance. She's 60 miles from home, and still in the region at least nominally covered by our plan - but student insurance is cheap and if we had bought it, it would have made the balancing act about where to send her for bloodwork much easier. (The local clinic was only partially covered, but it required a 160 mile round trip to pick her up and haul her to the closest fully covered clinic - and I couldn't get anyone to even give me a ballpark guess as to the

cost of the tests to figure out whether the drive cost more than the extra 10%.) I'll have to look to see what and where is covered - it might make the battle to get her to someone who has actually treated more than a couple of folks with PSC much easier. Then there's the tuition refund option for catastrophic illness we also skipped this year... hindsight is 20/20.So much to think about...guess it takes my mind off the BIG things I don't want to think about.

FYI If your daughter is getting college loans be sure the papers mention that the loans will be forgiven in the case of catastrophic illness.

Re: Introduction - new parent

Job Hunting? Start with the companies that posted job openings this week.

[Guest guest]

Thanks! This year we didn't take out loans. We were thinking of refinancing the house and rolling them into the mortgage for the next two years, since that gives us a slight tax advantage - but given her health conditions it may be better to have them in her own name (with a payoff for catastrophic illness payoff). For next year we also have to rethink student health insurance. She's 60 miles from home, and still in the region at least nominally covered by our plan - but student insurance is cheap and if we had bought it, it would have made the balancing act about where to send her for bloodwork much easier. (The local clinic was only partially covered, but it required a 160 mile round trip to pick her up and haul her to the closest fully covered clinic - and I couldn't get anyone to even give me a ballpark guess as to the

cost of the tests to figure out whether the drive cost more than the extra 10%.) I'll have to look to see what and where is covered - it might make the battle to get her to someone who has actually treated more than a couple of folks with PSC much easier. Then there's the tuition refund option for catastrophic illness we also skipped this year... hindsight is 20/20.So much to think about...guess it takes my mind off the BIG things I don't want to think about.

FYI If your daughter is getting college loans be sure the papers mention that the loans will be forgiven in the case of catastrophic illness.

Re: Introduction - new parent

Job Hunting? Start with the companies that posted job openings this week.

[Guest guest]

Thanks! This year we didn't take out loans. We were thinking of refinancing the house and rolling them into the mortgage for the next two years, since that gives us a slight tax advantage - but given her health conditions it may be better to have them in her own name (with a payoff for catastrophic illness payoff). For next year we also have to rethink student health insurance. She's 60 miles from home, and still in the region at least nominally covered by our plan - but student insurance is cheap and if we had bought it, it would have made the balancing act about where to send her for bloodwork much easier. (The local clinic was only partially covered, but it required a 160 mile round trip to pick her up and haul her to the closest fully covered clinic - and I couldn't get anyone to even give me a ballpark guess as to the

cost of the tests to figure out whether the drive cost more than the extra 10%.) I'll have to look to see what and where is covered - it might make the battle to get her to someone who has actually treated more than a couple of folks with PSC much easier. Then there's the tuition refund option for catastrophic illness we also skipped this year... hindsight is 20/20.So much to think about...guess it takes my mind off the BIG things I don't want to think about.

FYI If your daughter is getting college loans be sure the papers mention that the loans will be forgiven in the case of catastrophic illness.

Re: Introduction - new parent

Job Hunting? Start with the companies that posted job openings this week.

[Guest guest]

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The labs your daughter had done were probably very costly and I would bet that you benefited by driving and saving the 10% extra. The initial labs done while working up PSC include some specialized, expensive stuff. 15 years ago, I had labs done for an enlarged lymph node and had a 30% co-pay - and that bill was outrageous!

You asked about college accommodations. At this time, Joe is at a good place and is able to go to school and work. He has days that are not good, but not enough to impact his schedule now. He had two significant years, just after diagnosis, where he was not able to take classes at the high school, even with 504 education plan and special accommodations. He graduated from independent study (which was a good program, with good support).

Different, but a college experience: My older son Ben, broke his wrist in his freshman year, required surgery, long arm cast - right arm, during the last eight weeks of 2nd semester - he was offered disability assistance from the school, UNR - use of voice activated computers, etc. He refused, did all his work left handed (he is right handed) - hunt and pecked with left hand on keyboard. He got through it.

It is really difficult, and yes, it sure seems unfair. Yet, I am constantly amazed how well most of these kids accommodate, and how they mature and cope.

One last thought - you mentioned your daughter had lots of viral infections. I don't know if there is any scientific evidence, but Joe's experience is that whenever he gets a virus, it lasts much longer than it does for anyone else (which is a real pain).

Hope you all can have a good Sunday.

Joanne H

(, Ca., mom of Joe, 18, UC/PSC 2-06; JRA 98)

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[Guest guest]

Hi ,

I'm sorry to hear about your daughter's diagnosis and troubles in school. Freshman year is usually an exceptionally challenging time in every student's life. I happen to teach primarily freshmen at BGSU here in Ohio, and I know the difficulties of being an academic and having PSC: it's not easy. My biggest suggestion to your daughter would be to simply explain her situation to her profs. I completely empathize with her resistance to asking for "special treatment" (although most profs will be understanding and flexible if there is a good reason--which she has), but just explaining the situation can make a difference. For instance, this semester I had to wake up one student a couple times during one class. (e-gads!) When I pulled him aside after class, I learned that he did have a condition and was seeing a specialist later that week. This doesn't change my

evaluations of him directly and I'm not cutting him any breaks, but I try to keep in contact with him more frequently (by setting up conferences) and make suggestions with his condition in mind. Not to mention, at least I know he's not just slacking or partying (as can be an accurate stereotype of some students). Be sure, however, that your daughter has some documentation to show her profs--we get lied to a lot--and PSC isn't something most people are familiar with (or can SEE the symptoms of).

On a personal level, I've had to adapt and learn to manage time even more carefully (and accept that there will seemingly almost never be enough time for everything). For my own writing, I've learned that mornings work best. By late afternoon I'm "fuzzy" and tired--that's time for other tasks. I also learned that short naps do wonders for restoring focus. If your daughter is living in a dorm, adaptation might be even more difficult. She might talk to campus housing authorities and see about options: quiet dorms? a "single" room (without roomate)? Living off campus? These things may not be what she wants--making friends in dorms is part of the adaptation to college thing--but they might make a difference with the PSC.

Best of luck helping her find a balance!

(psc 2008)

[Guest guest]

Hi ,

I'm sorry to hear about your daughter's diagnosis and troubles in school. Freshman year is usually an exceptionally challenging time in every student's life. I happen to teach primarily freshmen at BGSU here in Ohio, and I know the difficulties of being an academic and having PSC: it's not easy. My biggest suggestion to your daughter would be to simply explain her situation to her profs. I completely empathize with her resistance to asking for "special treatment" (although most profs will be understanding and flexible if there is a good reason--which she has), but just explaining the situation can make a difference. For instance, this semester I had to wake up one student a couple times during one class. (e-gads!) When I pulled him aside after class, I learned that he did have a condition and was seeing a specialist later that week. This doesn't change my

evaluations of him directly and I'm not cutting him any breaks, but I try to keep in contact with him more frequently (by setting up conferences) and make suggestions with his condition in mind. Not to mention, at least I know he's not just slacking or partying (as can be an accurate stereotype of some students). Be sure, however, that your daughter has some documentation to show her profs--we get lied to a lot--and PSC isn't something most people are familiar with (or can SEE the symptoms of).

On a personal level, I've had to adapt and learn to manage time even more carefully (and accept that there will seemingly almost never be enough time for everything). For my own writing, I've learned that mornings work best. By late afternoon I'm "fuzzy" and tired--that's time for other tasks. I also learned that short naps do wonders for restoring focus. If your daughter is living in a dorm, adaptation might be even more difficult. She might talk to campus housing authorities and see about options: quiet dorms? a "single" room (without roomate)? Living off campus? These things may not be what she wants--making friends in dorms is part of the adaptation to college thing--but they might make a difference with the PSC.

Best of luck helping her find a balance!

(psc 2008)

[Guest guest]

I think that is a freshman girl for you, wanting to go out in a blaze of glory they think they are soooo bulletproof. I feel for you because we are just dealing with "being a freshman" and not the PSC on top of that. You both are in my prayers. Its nice that she is just 60 miles away. h is 130 miles and every once in a while will drive home in the middle of the week to "do her laundry" and then drive back that night. I guess the washing machines on the floor aren't up to her standards Good luck with the rest of the year. We have about a month and a half left. Hopefully your daughter has the same and then can be home for the summer.

To: Sent: Saturday, March 21, 2009 4:14:49 PMSubject: Re: Introduction - new parent

Thanks for the suggestions. Our problem is more on my daughter's end than the school's end. For some reason, she thinks its better to go down in a blaze of flames than to ask for help while she adjusts to a condition that people several times her age find difficult to manage and adjust to having. She's hooked in to the first year dean's office, as well as the disability access office (much to her chagrin), and will need to work with her advisor to swap the classes she probably needs to swap in order to make it through this semester.She is quite a trooper. When the brain fog hit at the end of last semester, she was afraid she was having mental health issues and dropped in to the student counseling services and had made an appointment to visit a local psychologist before she even talked to me about it (other than mentioning she thought she was depressed). Even though it turned out to more likely have a

physical cause we weren't aware of at the time, the fact that she had been so pro-active justified them granting her request for two incompletes, so she managed to finish first semester in reasonable shape.As to medical stuff - that child has already been through quite a bit, almost always in good spirits.

From: Litton <racemom6400@ yahoo.com>Subject: Re: Introduction - new parentTo: @ yahoogroups. comDate: Saturday, March 21, 2009, 5:01 PM

I would suggest that she starts with her advisor to get some help. I know with just the regular Freshman college stuff h has gotten a lot of good advice and input from hers. I couldn't imagine h dealing with PSC and all the stuff that goes with it on top of that. Your daughter must be quite a trooper!

From: Reeves <nlreeves (AT) yahoo (DOT) com>To: @ yahoogroups. comSent: Saturday, March 21, 2009 1:51:07 PMSubject: RE: Introduction - new parent

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[Guest guest]

That reinforces what I've been pushing since December when we first started this - talk to your professors. They need to know what is going on. (Her position is, "I look like crap every day. They should know I'm not well. While it may be true that she looks like crap - looking like crap can also be brought about by all night partying...)She's been in contact with the class deans from the beginning (mean old mom made her), so every time she's having a medical test or a visit to the ER they get a note from the dean - and in once case I've been in contact with the prof directly. (My department at my alma mater - so when it seemed to me she was past the point of effectively communicating with the prof in the class she was struggling most in I stepped in to at least let him know what was going on - although she now

will likely drop the class just to survive the semester.)We haven't talked about dorm life - it is an important part of the experience for her, but I suspect it does make it harder for her to keep regular hours. Living on campus is mandatory until senior year (although I suspect going through disability access services might garner an exception). We have talked about seeing if she could get into a co-op for eating as an accommodation. She really wants to avoid all of the heavily processed foods, but the cafeteria offers brown rice once a week and white rice the rest of the time - as opposed to at every meal, for example, so it is hard for her to make liver/GI friendly choices. The co-ops are (for the most part) more focused on local, organic, whole grain vegetarian/vegan meals - with fewer high sugar processed white flour alternatives. She's in one for next year - but the rest of this year will still be a

challenge.She actually did an impressive job of managing her initial bouts with brain fog last semester - whenever she found she couldn't work on writing she worked on other subjects. Problem is, she never found a time when her brain cleared enough for writing work - but because she didn't just give up when the fog (or feeling like she was crazy) hit she got everything else done in reasonable fashion, and with two incompletes and considerable prodding over Christmas break she finished with a respectable B/B+ semester average at one of the toughest colleges in Ohio. Now that I know what was really going on (as opposed to just thinking it was an extreme case of freshman stress), I'm even more impressed with what she accomplished - but this semeseter she has (understandably) run out of steam, so we're just trying to figure out how to get through the semester in one piece.My biggest suggestion to your daughter would be to simply explain her situation to her profs. I completely empathize with her resistance to asking for "special treatment" (although most profs will be understanding and flexible if there is a good reason--which she has), but just explaining the situation

can make a difference.Be sure, however, that your daughter has some documentation to show her profs--we get lied to a lot--and PSC isn't something most people are familiar with (or can SEE the symptoms of).

On a personal level, I've had to adapt and learn to manage time even more carefully (and accept that there will seemingly almost never be enough time for everything). For my own writing, I've learned that mornings work best. By late afternoon I'm "fuzzy" and tired--that' s time for other tasks. I also learned that short naps do wonders for restoring focus. If your daughter is living in a dorm, adaptation might be even more difficult. She might talk to campus housing authorities and see about options: quiet dorms? a "single" room (without roomate)? Living off campus? These things may not be what she wants--making friends in dorms is part of the adaptation to college thing--but they might make a difference with the PSC.

Best of luck helping her find a balance!

(psc 2008)

[Guest guest]

That reinforces what I've been pushing since December when we first started this - talk to your professors. They need to know what is going on. (Her position is, "I look like crap every day. They should know I'm not well. While it may be true that she looks like crap - looking like crap can also be brought about by all night partying...)She's been in contact with the class deans from the beginning (mean old mom made her), so every time she's having a medical test or a visit to the ER they get a note from the dean - and in once case I've been in contact with the prof directly. (My department at my alma mater - so when it seemed to me she was past the point of effectively communicating with the prof in the class she was struggling most in I stepped in to at least let him know what was going on - although she now

will likely drop the class just to survive the semester.)We haven't talked about dorm life - it is an important part of the experience for her, but I suspect it does make it harder for her to keep regular hours. Living on campus is mandatory until senior year (although I suspect going through disability access services might garner an exception). We have talked about seeing if she could get into a co-op for eating as an accommodation. She really wants to avoid all of the heavily processed foods, but the cafeteria offers brown rice once a week and white rice the rest of the time - as opposed to at every meal, for example, so it is hard for her to make liver/GI friendly choices. The co-ops are (for the most part) more focused on local, organic, whole grain vegetarian/vegan meals - with fewer high sugar processed white flour alternatives. She's in one for next year - but the rest of this year will still be a

challenge.She actually did an impressive job of managing her initial bouts with brain fog last semester - whenever she found she couldn't work on writing she worked on other subjects. Problem is, she never found a time when her brain cleared enough for writing work - but because she didn't just give up when the fog (or feeling like she was crazy) hit she got everything else done in reasonable fashion, and with two incompletes and considerable prodding over Christmas break she finished with a respectable B/B+ semester average at one of the toughest colleges in Ohio. Now that I know what was really going on (as opposed to just thinking it was an extreme case of freshman stress), I'm even more impressed with what she accomplished - but this semeseter she has (understandably) run out of steam, so we're just trying to figure out how to get through the semester in one piece.My biggest suggestion to your daughter would be to simply explain her situation to her profs. I completely empathize with her resistance to asking for "special treatment" (although most profs will be understanding and flexible if there is a good reason--which she has), but just explaining the situation

can make a difference.Be sure, however, that your daughter has some documentation to show her profs--we get lied to a lot--and PSC isn't something most people are familiar with (or can SEE the symptoms of).

On a personal level, I've had to adapt and learn to manage time even more carefully (and accept that there will seemingly almost never be enough time for everything). For my own writing, I've learned that mornings work best. By late afternoon I'm "fuzzy" and tired--that' s time for other tasks. I also learned that short naps do wonders for restoring focus. If your daughter is living in a dorm, adaptation might be even more difficult. She might talk to campus housing authorities and see about options: quiet dorms? a "single" room (without roomate)? Living off campus? These things may not be what she wants--making friends in dorms is part of the adaptation to college thing--but they might make a difference with the PSC.

Best of luck helping her find a balance!

(psc 2008)

[Guest guest]

Yeah - it's pretty typical. Not only bulletproof - BUT they know everything. But she's not footing the bill. It's spring break - she'll be home for a couple of days (after she finishes her winter term project that all this fatigue, viruses, and diagnostic nonsense kept her from finishing). We'll have a little chance to talk - which we really haven't had since she was diagnosed. I called last night. Since the food service is closed down she's cooking for herself until Wednesday. She sounded happier than I've heard her in a long time. She had just chopped up a hunks of ginger and garlic, cooked a pot of brown rice and was staring at green onions wondering how to chop them (and wondering what the difference was between sauteeing and stir frying). I didn't have the heart to ask her how all her make-up work was

coming along...Subject: Re: Introduction - new parentTo: Date: Sunday, March 22, 2009, 1:47 PM

I think that is a freshman girl for you, wanting to go out in a blaze of glory they think they are soooo bulletproof. I feel for you because we are just dealing with "being a freshman" and not the PSC on top of that. You both are in my prayers. Its nice that she is just 60 miles away. h is 130 miles and every once in a while will drive home in the middle of the week to "do her laundry" and then drive back that night. I guess the washing machines on the floor aren't up to her standards Good luck with the rest of the year. We have about a month and a half left. Hopefully your daughter has the same and then can be home for the summer.

[Guest guest]

Yeah - it's pretty typical. Not only bulletproof - BUT they know everything. But she's not footing the bill. It's spring break - she'll be home for a couple of days (after she finishes her winter term project that all this fatigue, viruses, and diagnostic nonsense kept her from finishing). We'll have a little chance to talk - which we really haven't had since she was diagnosed. I called last night. Since the food service is closed down she's cooking for herself until Wednesday. She sounded happier than I've heard her in a long time. She had just chopped up a hunks of ginger and garlic, cooked a pot of brown rice and was staring at green onions wondering how to chop them (and wondering what the difference was between sauteeing and stir frying). I didn't have the heart to ask her how all her make-up work was

coming along...Subject: Re: Introduction - new parentTo: Date: Sunday, March 22, 2009, 1:47 PM

I think that is a freshman girl for you, wanting to go out in a blaze of glory they think they are soooo bulletproof. I feel for you because we are just dealing with "being a freshman" and not the PSC on top of that. You both are in my prayers. Its nice that she is just 60 miles away. h is 130 miles and every once in a while will drive home in the middle of the week to "do her laundry" and then drive back that night. I guess the washing machines on the floor aren't up to her standards Good luck with the rest of the year. We have about a month and a half left. Hopefully your daughter has the same and then can be home for the summer.