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Martha:

Very good line" feel the heat". I do not have to deal with adolescent / psc caregiving so excuse my being so flippant. Just the reminder of a teenager in school, college makes me cringe. We many times used W. Churchill's saying, walk softly and carry a big stick. I thought my son would turn out living in a van down by the river. But....such a wonderful surprise he is and tells us often that we were tough and now that he has a child nearing teens, realizes our plan. I do not know how this fits into a young man's plan who suffered with doom and gloom for so long but I think I would call in all the troops I could; to get this young man to see the light.

You gave good advice. Love your words.

dee

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Dee Vinovich wrote:

>

> Very good line " feel the heat " . I do not have to deal with adolescent /

> psc caregiving so excuse my being so flippant. Just the reminder of

> a teenager in school, college makes me cringe. We many times used W.

> Churchill's saying, walk softly and carry a big stick.

Excellent advice!! Will y'all forgive me if I correct the historical

record, though? :-) Winston Churchill was not the person most closely

associated with this quote.

In a letter written in 1900, a year before he became president, Theodore

Roosevelt wrote, " I have always been fond of the West African proverb:

`Speak softly and carry a big stick; you will go far. " He repeated what

he called this " homely old adage " in a speech as president in Chicago in

1903, and twice again in his writings after that.

However, Churchill was famous for another bit of wisdom, also

particularly appropriate to dealing with teenagers, and that was " Never,

never, never give up! "

Regards,

Carolyn B. in SC

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thank you MartiDee Vinovich wrote: Martha: Very good line" feel the heat". I do not have to deal with adolescent / psc caregiving so excuse my being so flippant. Just the reminder of a teenager in school, college makes me cringe. We many times used W. Churchill's saying, walk softly and carry a big stick. I

thought my son would turn out living in a van down by the river. But....such a wonderful surprise he is and tells us often that we were tough and now that he has a child nearing teens, realizes our plan. I do not know how this fits into a young man's plan who suffered with doom and gloom for so long but I think I would call in all the troops I could; to get this young man to see the light. You gave good advice. Love your words. dee

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I believe in my heart he is not ready for college but the insurance thing is the problem. I will have to see if there are any alternatives. Martidawndeco wrote: Marti,I think you are getting some sound advice. I would look into what kinda help your state offers for health insurance. And Martha's suggestion on working with the school. Your son is not your typical student and therefore may be allowed extra help. BUT HE has to want it. Then there is the possiblity he

is not ready for college. Do your best to see if he knows what he wants and support that, or if he doesn't ask him if he needs help finding what that is. It is going to be hard because he spent most of his life fighting for it... and now what...He is in my prayers,LitsaDH TX 1/03/07 for PSC

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I believe in my heart he is not ready for college but the insurance thing is the problem. I will have to see if there are any alternatives. Martidawndeco wrote: Marti,I think you are getting some sound advice. I would look into what kinda help your state offers for health insurance. And Martha's suggestion on working with the school. Your son is not your typical student and therefore may be allowed extra help. BUT HE has to want it. Then there is the possiblity he

is not ready for college. Do your best to see if he knows what he wants and support that, or if he doesn't ask him if he needs help finding what that is. It is going to be hard because he spent most of his life fighting for it... and now what...He is in my prayers,LitsaDH TX 1/03/07 for PSC

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-----Original

Message-----

not ready for college but

the insurance thing is the problem. I will have to see

if there are any alternatives.

Marti,

What state do you live

in?

Barb in Texas - Together in the Fight, Whatever it

Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

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New York MartiBarb Henshaw wrote: -----Original Message----- not ready for college but the insurance thing is the problem. I will have to see if there are any alternatives. Marti, What state do you live in? Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

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New York MartiBarb Henshaw wrote: -----Original Message----- not ready for college but the insurance thing is the problem. I will have to see if there are any alternatives. Marti, What state do you live in? Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

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Marti

Maybe he would be happier in a technical school, or in a vocation program working on an associate degree. He could focus on program that doesn't require as many academic classes. A computer program may interest him, or other classes that will lead into a profession. Does he like to cook? or repair engines?

He could even train to be guy who does the CT scans, instead of the guy who gets them.

I think most insurance policies will cover a student in these programs as well as in a university. Is there a support group for young adults with transplants in your area?

You can offer the choice, either goes to school, or gets a job with benefits.

Good Luck, Take Care

MizKitSee what's free at AOL.com.

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http://healthinsurance.about.com/od/highriskpools/a/hrps.htm

This site tells you all about High Risk Pools – it looks like New York doesn’t have this insurance option.

http://www.nahu.org/consumer/healthcare/state.cfm

_This site tells you all about health

insurance (including guide lines) for the state of New York.

HTH Barb in Texas_,_._,___

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He is going to a 2 year college now. I don't think he really knows what he wants and I think that is the biggest problem. He goes back and forth about what he'd like to do. There are few jobs out the for a high school grad with benefits. He will be home tonight for the first time in a couple months so I am hoping to have a heart to heart talk with him. The problem is everytime I try to explain the importance of being in a plan to have insurance he insists that I upset him than he doesn't feel well and can't concentrate enough to go to class. I am very careful about what I say but I am not getting anywhere. Marti cmp12305@... wrote: Marti Maybe he would be happier in a technical school, or in a vocation program working on an associate degree. He could focus on program that doesn't require as many academic classes. A computer program may interest him, or other classes that will lead into a profession. Does he like to cook? or repair engines? He could even train to be guy who does the CT scans, instead of the guy who gets them. I think most insurance policies will cover a student in these programs as well as in a university. Is there a support group for young adults with transplants in your area? You can offer the choice, either goes to school, or gets a job

with benefits. Good Luck, Take Care MizKit See what's free at AOL.com.

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first I am sorry that I did not delete the original message. I tried and it would not go away. Depending on what other symptoms your son has, you may be able to get him on disability soon. I was lucky and found a very caring woman at the disability and Medicare office that helped and we got him on fairly quickly. I know that is not the usual though. If your son is a senior and college does not look promising due to his disease, I would start looking now. We have a tx support group and you guys but wants nothing to do with either. I think it has to do with being "different". He spent so long that way. Martijmhatch39 wrote: >> I believe in my heart he is not ready for college but the insurancething is the problem. I will have to see if there are any alternatives.> MartiMarti -How I empathize with what you are going through. And I appreciatereading others' responses to you, as I learn from each of them.In past, I would often read posts about how well most of the teenswith PSC were doing... and I would wonder what I, as a parent, wasdoing wrong! My son, , nearly 17, has never been a "driven"student and had never really found an activity or sport or hobby(except computer games) that he truly loved and was excited about. Since his PSC/UC, he has dropped most

of the activities he didparticipate in - playing the trumpet, skiing, skateboarding, etc. Andschool is really a struggle.As the parent, I always wonder how much the PSC symptoms (fatigue,lousy sleep, abdominal pain, etc) drag him down, how much is "typical"teen behavior, and what combination of the two?!? And I wonder howmuch to push - and never truly know the answer.I am very concerned that he will not be able to be a full-time collegestudent and fear the insurance issues that will follow. Sometimes Ithink that I should be putting 100% effort into universal healthcarecoverage to cover all the PSC'ers. And I worry that I should beinvestigating disability now and not waiting. And I feel guilty thatI feel guilty that is not accomplishing what I think he iscapable of.The "living under a cloud of doom" certainly expresses how many ofthese teens and young adults must feel. The younger kids likely

alsofeel similar, although they may not be able to express it orunderstand the implications of PSC as well as the older ones.Oops - this is a long post... and now everyone knows what aworry-wort I am! Yes, I'm a worrier and hoped and expected that mychildren would be high achievers - which isn't always the bestparental approach, but I'm honest!I'm sorry you and your son are having to deal with all of this. Andjust wanted you to know that you're not alone and that we certainlycare! One other thought, when my older son broke his wrist and had to havesurgery, etc., Univ of Nevada Reno was incredibly supportive. I wasamazed how much they offered with making up work, assistance withvoice activated computer equipment (as he couldn't use his dominanthand), etc. It just took a couple telephone calls and emails tostudent services.Joanne(, Ca., mom of , 16, UC/PSC 2-06; JRA

1998)

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He loves Boston so I will keep that in mind. MartiMartha wrote: Marti, In Massachusetts there's the new law that everyone has to have healthinsurance by this July, and there's low-cost plans for people with lowincomes. I don't know much about the plans, just what I hear on thenews. Eventually the plan is that they should be good for chronicconditions and have good prescription coverage, but I think thelow-cost options probably are more geared for

catastrophe at themoment. So if all else fails, he can move over the state line.Martha (MA)> Barb Henshaw wrote:> -----Original Message----->> Marti,> What state do you live in? > > Barb in Texas - Together in the Fight, Whatever it Takes!> Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

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Suz came home last night and we have talked a little. I found out his 2 best friends at the college both are there but are taking the semester off and relaxing. I imagine this is hard for to see them not getting up for class and parting at night and he wants to do the same. MartiSuzanne Stone wrote: Hello,I'm the wife of a 27 yr old man. I'm 28. He had take down for UC in 2001 and now has PSC. He is still going to college, trying to get his

bachelor's from metro. Even though we are a bit older than your son, we still have the same problems with insurance. It is just really hard when you are younger to get good insurance with a job. My full time job used to offer good benefits, then this year they have changed to another plan that caps at 50,000 per year. He has not had a transplant yet, but if he does need one this year we will have to borrow a huge amount of money from relatives unless we can get something else worked out.He doesn't have a full time job. He is still going to school, so we are looking into getting medical through the school in addition to the one through my work. The problem is he was 1 unit under full load last spring. At his college if you had a full load in spring you qualify for medical during the summer even if you don't take summer school. He is probably going to have to take summer school to qualify for their

insurance.There are some full time jobs out there that offer benefits. Try looking at Fortune's list of top 100 companies to work for, as rated by the employees. Starbucks, for example, offers benefits to part time employees as long as they have a minimum number of hours worked per quarter. I did the math and it looks like it works out to 18 hours a week. Also Whole Foods or Wild Oats. One of them pays 100% of the medical insurance.My husband has been in and out of the hospital this year, but he is working at the grocery store (not Whole Foods, King Soopers), like someone else has suggested. It is under the Kroger umbrella. I don't know what the grocers are like in your area, but he has to work there a year before he gets benefits through his company. There are 3 plans, A, B, and C, and you qualify for different ones as you work for them longer. Courtesy clerks (baggers) seem to never work their way up,

and stay on plan A. I would assume plan A doesn't cover as much as the others. My husband would have been elligible for insurance through his company this month but went on leave of absence.My husband has not had to drop any classes this semester due to the illness. He dragged himself to classes and managed to sit through the hour discussion. It would be much harder to drag himself to work and stand for 8 hours as a cashier. If your son is feeling ok, then either is an option, but if he is feeling bad, the schooling is easier to put up with if you are sick. In addition, employers don't seem to have a lot of sympathy for sickly employees, despite what FMLA supposedly does. That is why my husband was practically pushed out of his last job. So if he's sick, he wants school not work. Also there's online courses at most universities now, which makes it even easier...As for a case of the stupids, irresponsibility, I

think it is something that typically happens to a great majority of early 20-somethings. Just look at any party school. Unfortunately your son has more at stake than a bad hangover and bad grades.I can relate to your situation. My husband is going to a school he hates (he is very conservative, and public school is not,) but continues to go because he wants the degree. He was working a job that he hates, because he can't make money yet off of his planned real profession (author). He has a young adult novel written but can't find the time to edit it between everything else that is going on. When he started getting really sick 2 mo. ago, something had to give. It was the work. I try to talk to him about getting more insurance, about him going to summer school to qualify for more insurance, summer school at a place that he hates, and he just about looses it. It gets to the point of, so he's had a lot of procedures

done on him and tons of hospital stays for what? So that he can waste his time on things that he doesn't care about just so that he can get insurance to get more hospital stays. It's like working a job to pay for the gas for to get to the job. At some point you say, so when do I get to do all this "living" that they talked about?My suggestion is to let your son do some soul-searching, grab a copy of "what color is my parachute," etc, to see what he wants to be doing, and then look for a college that does it. Most likely he's in the wrong major, not ready for college (like you said), and needs to figure out what he is ready for. He probably also needs a break. Pushing him to go to classes that he can't pass or isn't interested in, having it seem that possibly his life is dependent on these classes (should something go wrong and he not have insurance) is probably too much for him. I can understand him not wanting to

deal with it. My husband has said the same thing this year. "Everybody is talking to me about my PSC. They say I should take it seriously, etc, etc, etc. I take my medicine on time, try to take care of myself, etc. I'm doing everything I can. But just because I have this disease doesn't mean that I want to spend every waking minute thinking about the disease. I want to do other things too. I don't need this to take over my life, and I feel like everyone else will be upset at me if I don't make my life all about my PSC." I think his attitude is pretty healthy. Your son might be feeling the same way about the insurance. Insurance is important, so you can lead a happy, healthy life. But living is also important.Not that I'm saying to let him go off the insurance, but just trying to help you maybe see more of what he is thinking. He's probably not got a case of the stupids at

all...

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Suz came home last night and we have talked a little. I found out his 2 best friends at the college both are there but are taking the semester off and relaxing. I imagine this is hard for to see them not getting up for class and parting at night and he wants to do the same. MartiSuzanne Stone wrote: Hello,I'm the wife of a 27 yr old man. I'm 28. He had take down for UC in 2001 and now has PSC. He is still going to college, trying to get his

bachelor's from metro. Even though we are a bit older than your son, we still have the same problems with insurance. It is just really hard when you are younger to get good insurance with a job. My full time job used to offer good benefits, then this year they have changed to another plan that caps at 50,000 per year. He has not had a transplant yet, but if he does need one this year we will have to borrow a huge amount of money from relatives unless we can get something else worked out.He doesn't have a full time job. He is still going to school, so we are looking into getting medical through the school in addition to the one through my work. The problem is he was 1 unit under full load last spring. At his college if you had a full load in spring you qualify for medical during the summer even if you don't take summer school. He is probably going to have to take summer school to qualify for their

insurance.There are some full time jobs out there that offer benefits. Try looking at Fortune's list of top 100 companies to work for, as rated by the employees. Starbucks, for example, offers benefits to part time employees as long as they have a minimum number of hours worked per quarter. I did the math and it looks like it works out to 18 hours a week. Also Whole Foods or Wild Oats. One of them pays 100% of the medical insurance.My husband has been in and out of the hospital this year, but he is working at the grocery store (not Whole Foods, King Soopers), like someone else has suggested. It is under the Kroger umbrella. I don't know what the grocers are like in your area, but he has to work there a year before he gets benefits through his company. There are 3 plans, A, B, and C, and you qualify for different ones as you work for them longer. Courtesy clerks (baggers) seem to never work their way up,

and stay on plan A. I would assume plan A doesn't cover as much as the others. My husband would have been elligible for insurance through his company this month but went on leave of absence.My husband has not had to drop any classes this semester due to the illness. He dragged himself to classes and managed to sit through the hour discussion. It would be much harder to drag himself to work and stand for 8 hours as a cashier. If your son is feeling ok, then either is an option, but if he is feeling bad, the schooling is easier to put up with if you are sick. In addition, employers don't seem to have a lot of sympathy for sickly employees, despite what FMLA supposedly does. That is why my husband was practically pushed out of his last job. So if he's sick, he wants school not work. Also there's online courses at most universities now, which makes it even easier...As for a case of the stupids, irresponsibility, I

think it is something that typically happens to a great majority of early 20-somethings. Just look at any party school. Unfortunately your son has more at stake than a bad hangover and bad grades.I can relate to your situation. My husband is going to a school he hates (he is very conservative, and public school is not,) but continues to go because he wants the degree. He was working a job that he hates, because he can't make money yet off of his planned real profession (author). He has a young adult novel written but can't find the time to edit it between everything else that is going on. When he started getting really sick 2 mo. ago, something had to give. It was the work. I try to talk to him about getting more insurance, about him going to summer school to qualify for more insurance, summer school at a place that he hates, and he just about looses it. It gets to the point of, so he's had a lot of procedures

done on him and tons of hospital stays for what? So that he can waste his time on things that he doesn't care about just so that he can get insurance to get more hospital stays. It's like working a job to pay for the gas for to get to the job. At some point you say, so when do I get to do all this "living" that they talked about?My suggestion is to let your son do some soul-searching, grab a copy of "what color is my parachute," etc, to see what he wants to be doing, and then look for a college that does it. Most likely he's in the wrong major, not ready for college (like you said), and needs to figure out what he is ready for. He probably also needs a break. Pushing him to go to classes that he can't pass or isn't interested in, having it seem that possibly his life is dependent on these classes (should something go wrong and he not have insurance) is probably too much for him. I can understand him not wanting to

deal with it. My husband has said the same thing this year. "Everybody is talking to me about my PSC. They say I should take it seriously, etc, etc, etc. I take my medicine on time, try to take care of myself, etc. I'm doing everything I can. But just because I have this disease doesn't mean that I want to spend every waking minute thinking about the disease. I want to do other things too. I don't need this to take over my life, and I feel like everyone else will be upset at me if I don't make my life all about my PSC." I think his attitude is pretty healthy. Your son might be feeling the same way about the insurance. Insurance is important, so you can lead a happy, healthy life. But living is also important.Not that I'm saying to let him go off the insurance, but just trying to help you maybe see more of what he is thinking. He's probably not got a case of the stupids at

all...

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