Checking in

[Guest guest]

,I think its premature to build a relationship with a transplant center at this point. At the moment you are doing well and it might be 20+ years before you need a transplant. A lot can happen in that time, you might move to a different area, the staff could completely change over, etc. Be conscious of your disease (ie don't stess your liver), but live life to the fullest.

Ian (52) PSC 89PS see if you can influence Obama to change his very pro-abortion stance.

Hi Nita,

Thanks, that's good advice. Part of the reason I joined the Obama

campaign last year as a field organizer was just this kind of

reasoning. I was bored in my old position and decided life was to

short not to take advantage of such a great (historical) opportunity -

especially since I've been feeling ok. Still being in my 30s makes

me want to take advantage of stuff like this.

On the medical side of things, do you or others think having a annual

check up with my Hep. Doc with a MRCP (and annual colonoscopy with my

gastro Doc) is suffient? I've heard people talk about building

realionships with transplant centers but I'm not sure I should wait

on that. I guess town Hospital is a transplant center, so

maybe my annual checkups suffice for now.

Thanks all!

Washington DC

UC 94'/PSC'05

>

> Hi ,

>

>

>

> I'm not really sure what kind of advice you were looking for, but

here's

> mine:

>

>

>

> Do something you have always wanted to do but never had the time or

energy

> for. For me that would be a trip to somewhere that I could take

terrific

> pictures. But that's going to something different for everyone in

the group.

>

>

>

> Between my health, and the fact that my husband never made it this

far - I'm

> so glad we chose to spend a good portion of our retirement money to

travel

> in our 50s. We saw parts of India, Africa, Germany, England, and

much of the

> US. I'll still travel as my health permits, but I don't have the

energy or

> stamina to hike and haul camera equipment around like I did. And

Dave

> wouldn't have been able to go at all.

>

>

>

> Nita

>

>

>

> ===============================

>

> So, just wondering... is there anything else you all think I should

be doing

> if I'm feeling fine for now?

>

-- Ian Cribb  P.Eng.

[Guest guest]

,I think its premature to build a relationship with a transplant center at this point. At the moment you are doing well and it might be 20+ years before you need a transplant. A lot can happen in that time, you might move to a different area, the staff could completely change over, etc. Be conscious of your disease (ie don't stess your liver), but live life to the fullest.

Ian (52) PSC 89PS see if you can influence Obama to change his very pro-abortion stance.

Hi Nita,

Thanks, that's good advice. Part of the reason I joined the Obama

campaign last year as a field organizer was just this kind of

reasoning. I was bored in my old position and decided life was to

short not to take advantage of such a great (historical) opportunity -

especially since I've been feeling ok. Still being in my 30s makes

me want to take advantage of stuff like this.

On the medical side of things, do you or others think having a annual

check up with my Hep. Doc with a MRCP (and annual colonoscopy with my

gastro Doc) is suffient? I've heard people talk about building

realionships with transplant centers but I'm not sure I should wait

on that. I guess town Hospital is a transplant center, so

maybe my annual checkups suffice for now.

Thanks all!

Washington DC

UC 94'/PSC'05

>

> Hi ,

>

>

>

> I'm not really sure what kind of advice you were looking for, but

here's

> mine:

>

>

>

> Do something you have always wanted to do but never had the time or

energy

> for. For me that would be a trip to somewhere that I could take

terrific

> pictures. But that's going to something different for everyone in

the group.

>

>

>

> Between my health, and the fact that my husband never made it this

far - I'm

> so glad we chose to spend a good portion of our retirement money to

travel

> in our 50s. We saw parts of India, Africa, Germany, England, and

much of the

> US. I'll still travel as my health permits, but I don't have the

energy or

> stamina to hike and haul camera equipment around like I did. And

Dave

> wouldn't have been able to go at all.

>

>

>

> Nita

>

>

>

> ===============================

>

> So, just wondering... is there anything else you all think I should

be doing

> if I'm feeling fine for now?

>

-- Ian Cribb  P.Eng.

[Guest guest]

,I think its premature to build a relationship with a transplant center at this point. At the moment you are doing well and it might be 20+ years before you need a transplant. A lot can happen in that time, you might move to a different area, the staff could completely change over, etc. Be conscious of your disease (ie don't stess your liver), but live life to the fullest.

Ian (52) PSC 89PS see if you can influence Obama to change his very pro-abortion stance.

Hi Nita,

Thanks, that's good advice. Part of the reason I joined the Obama

campaign last year as a field organizer was just this kind of

reasoning. I was bored in my old position and decided life was to

short not to take advantage of such a great (historical) opportunity -

especially since I've been feeling ok. Still being in my 30s makes

me want to take advantage of stuff like this.

On the medical side of things, do you or others think having a annual

check up with my Hep. Doc with a MRCP (and annual colonoscopy with my

gastro Doc) is suffient? I've heard people talk about building

realionships with transplant centers but I'm not sure I should wait

on that. I guess town Hospital is a transplant center, so

maybe my annual checkups suffice for now.

Thanks all!

Washington DC

UC 94'/PSC'05

>

> Hi ,

>

>

>

> I'm not really sure what kind of advice you were looking for, but

here's

> mine:

>

>

>

> Do something you have always wanted to do but never had the time or

energy

> for. For me that would be a trip to somewhere that I could take

terrific

> pictures. But that's going to something different for everyone in

the group.

>

>

>

> Between my health, and the fact that my husband never made it this

far - I'm

> so glad we chose to spend a good portion of our retirement money to

travel

> in our 50s. We saw parts of India, Africa, Germany, England, and

much of the

> US. I'll still travel as my health permits, but I don't have the

energy or

> stamina to hike and haul camera equipment around like I did. And

Dave

> wouldn't have been able to go at all.

>

>

>

> Nita

>

>

>

> ===============================

>

> So, just wondering... is there anything else you all think I should

be doing

> if I'm feeling fine for now?

>

-- Ian Cribb  P.Eng.

[Guest guest]

Hi ,

If your hep doctor is at a transplant center, I think your regular appointments should be good for right now. Mine is, and when she thought I needed to see the transplant folks, she didn't hesitate at all to set up the evaluation and get me listed. Nothing has come through yet, but i'm hopeful.

Nita

[Guest guest]

Thanks Nina, Ian and Barb for your advice. My Doctor (Doctor Shetty)

at town is the head of the liver transplant program so I guess

I'm in luck! I'm going to see here soon, so I'll make sure to ask if

there is anything else I should do. Ian: 20 years is a long time! Is

your PSC pretty active or more dormant?

Thank guys for your input!

[Guest guest]

Thanks Nina, Ian and Barb for your advice. My Doctor (Doctor Shetty)

at town is the head of the liver transplant program so I guess

I'm in luck! I'm going to see here soon, so I'll make sure to ask if

there is anything else I should do. Ian: 20 years is a long time! Is

your PSC pretty active or more dormant?

Thank guys for your input!

[Guest guest]

Thanks Nina, Ian and Barb for your advice. My Doctor (Doctor Shetty)

at town is the head of the liver transplant program so I guess

I'm in luck! I'm going to see here soon, so I'll make sure to ask if

there is anything else I should do. Ian: 20 years is a long time! Is

your PSC pretty active or more dormant?

Thank guys for your input!

[Guest guest]

Dear Margie, I am so glad to hear you might come to the conference. You will not be the only one fighting fatigue. If you stay at the hotel anytime you need a nap you can escape to your room. You can look ahead at the talks that you are the most interested in and then take rest periods during the others. I hope some of the others who have this in common with you , will offer their suggestions.I am thinking of attending the conference in Chicago but am wondering how I can do so because of my messed up sleep cycle. How does everyone else plan to deal with the fatigue and insomnia caused by PSC? My daughter will be moving from Naperville IL to Aurora IL the end of this month, so I could stay with her, plus my good friend Penny Weller is also welcome to stay with us, or I could stay at the hotel where the conference is being held, but either way, I am concerned about the schedule. I'd like ideas from other members of the group on how to participate at least part of the time. It would be great to be there. Time to stop rambling and get to bed.Margie in MOPSC DX 3/99

[Guest guest]

Donna you are in my prayers.

Hugs

nne

To the world you might be one person, but to one person you just might be the

world "

" May the Lord Bless you and keep you,

May the Lord Make his face shine upon you, and give you Peace...Forever "

Breast Cancer Patients Soul Mates for Life

http://breastcancerpatientssoulmatesforlife.bravehost.com/

Anxiety Depression and Breast Cancer

http://health.groups.yahoo.com/group/AnxietyDepressionandBreastCancer

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

The Cancer Club

www.cancerclub.com

> checking in

>

> Back in April, I paid for my plot in the community garden. I have only

> been to the garden 3 times, the first two times, I left the garden with

> such pain in my back. The last time I went to the garden, I only stayed

> 45 minutes. I left without pain in my back; but, got involved with some

> kind of activity at home that caused my back to spazz out and gave me

> pain that lasted more than a week. I took Tylenol and Aleve to try and

> relieve the pain, to no avail. The only relief I got was when I tied a

> freezer pack to the painful area.

>

> The Nurse Practitioner that I see wanted to send me to physical therapy

> to get a TENS unit. I saw the physical therapist this morning and she

> said that she will address my back but wants to work on my balance. She

> said that balance can be relearned. Funny thing is, I never think there

> is anything wrong with my balance until I lose it. I have fallen 3 times

> over the last month. That's what I told the therapist. Years ago, I

> used to walk every day. I could walk 3 miles in just under an hour.

> Falling didn't make me quit walking until it became an every day

> occurrence. I would still go walking if one of my sons went with me.

>

> In the past, I have been to physical therapy for my back, shoulders,

> knees, and ankles. It doesn't really help; except it does make the

> doctors happy because I'm cooperating with them.

>

> During her assessment of my balance, she had me walk in a straight line

> first with my eyes open, then with them closed. Then she had me keep my

> eyes open and walk in a straight line all the will I was moving my head

> side to side, then up an down. She then had me sit down and went and got

> this spongy looking cushion. It was maybe 4 or 5 inches thick. She

> helped me to stand up on it. Then she had me just stand first with my

> feet slightly apart, then with them together. She had me repeat the same

> thing with my eyes closed. My balance was worse with my eyes closed. I

> told her that I was glad the sidewalks were not made of that stuff; but,

> if they were it wouldn't hurt as much if I fell. Of course, it would

> make getting back up somewhat harder.

>

> The therapist thinks that the balance issues could go hand in hand with

> the pain in my back. So, that's why she wants to address my balance.

>

> There are times when I feel I can't trust my own body to cooperate with

> what I want it to do.

>

> Donna in WA

____________________________________________________________

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[Guest guest]

I was replying on group to Donna in WA. Isn't that what I did?hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Tue, July 19, 2011 4:27:14 AMSubject: Re: checking in

Sharon dear..you sent this to the wrong Donna..HUGSTo: MSersLife Sent: Tuesday, July 12, 2011 7:56:34 PMSubject: Re: checking in

I hope the PT helps your balance! Wouldn't that be wonderful?? Let us know how it goes for you. I sure wish you could spend some painfree time at the garden plot!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: mserslife Sent: Tue, July 12, 2011 2:08:01 PMSubject: checking in

Back in April, I paid for my plot in the community garden. I have only been to the garden 3 times, the first two times, I left the garden with such pain in my back. The last time I went to the garden, I only stayed 45 minutes. I left without pain in my back; but, got involved with some kind of activity at home that caused my back to spazz out and gave me pain that lasted more than a week. I took Tylenol and Aleve to try and relieve the pain, to no avail. The only relief I got was when I tied a freezer pack to the painful area. The Nurse Practitioner that I see wanted to send me to physical therapy to get a TENS unit. I saw the physical therapist this morning and she said that she will address my back but wants to work on my balance. She said that balance can be relearned. Funny thing is, I never think there is anything wrong with my balance until I lose it. I have fallen 3 times over the

last month. That's what I told the therapist. Years ago, I used to walk every day. I could walk 3 miles in just under an hour. Falling didn't make me quit walking until it became an every day occurrence. I would still go walking if one of my sons went with me. In the past, I have been to physical therapy for my back, shoulders, knees, and ankles. It doesn't really help; except it does make the doctors happy because I'm cooperating with them. During her assessment of my balance, she had me walk in a straight line first with my eyes open, then with them closed. Then she had me keep my eyes open and walk in a straight line all the will I was moving my head side to side, then up an down. She then had me sit down and went and got this spongy looking cushion. It was maybe 4 or 5 inches thick. She helped me to stand up on it. Then she had me just stand first with

my feet slightly apart, then with them together. She had me repeat the same thing with my eyes closed. My balance was worse with my eyes closed. I told her that I was glad the sidewalks were not made of that stuff; but, if they were it wouldn't hurt as much if I fell. Of course, it would make getting back up somewhat harder. The therapist thinks that the balance issues could go hand in hand with the pain in my back. So, that's why she wants to address my balance. There are times when I feel I can't trust my own body to cooperate with what I want it to do. Donna in WA------------------------------------

[Guest guest]

I was replying on group to Donna in WA. Isn't that what I did?hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Tue, July 19, 2011 4:27:14 AMSubject: Re: checking in

Sharon dear..you sent this to the wrong Donna..HUGSTo: MSersLife Sent: Tuesday, July 12, 2011 7:56:34 PMSubject: Re: checking in

I hope the PT helps your balance! Wouldn't that be wonderful?? Let us know how it goes for you. I sure wish you could spend some painfree time at the garden plot!hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: mserslife Sent: Tue, July 12, 2011 2:08:01 PMSubject: checking in

Back in April, I paid for my plot in the community garden. I have only been to the garden 3 times, the first two times, I left the garden with such pain in my back. The last time I went to the garden, I only stayed 45 minutes. I left without pain in my back; but, got involved with some kind of activity at home that caused my back to spazz out and gave me pain that lasted more than a week. I took Tylenol and Aleve to try and relieve the pain, to no avail. The only relief I got was when I tied a freezer pack to the painful area. The Nurse Practitioner that I see wanted to send me to physical therapy to get a TENS unit. I saw the physical therapist this morning and she said that she will address my back but wants to work on my balance. She said that balance can be relearned. Funny thing is, I never think there is anything wrong with my balance until I lose it. I have fallen 3 times over the

last month. That's what I told the therapist. Years ago, I used to walk every day. I could walk 3 miles in just under an hour. Falling didn't make me quit walking until it became an every day occurrence. I would still go walking if one of my sons went with me. In the past, I have been to physical therapy for my back, shoulders, knees, and ankles. It doesn't really help; except it does make the doctors happy because I'm cooperating with them. During her assessment of my balance, she had me walk in a straight line first with my eyes open, then with them closed. Then she had me keep my eyes open and walk in a straight line all the will I was moving my head side to side, then up an down. She then had me sit down and went and got this spongy looking cushion. It was maybe 4 or 5 inches thick. She helped me to stand up on it. Then she had me just stand first with

my feet slightly apart, then with them together. She had me repeat the same thing with my eyes closed. My balance was worse with my eyes closed. I told her that I was glad the sidewalks were not made of that stuff; but, if they were it wouldn't hurt as much if I fell. Of course, it would make getting back up somewhat harder. The therapist thinks that the balance issues could go hand in hand with the pain in my back. So, that's why she wants to address my balance. There are times when I feel I can't trust my own body to cooperate with what I want it to do. Donna in WA------------------------------------

[Guest guest]

Good to hear from you Jackie. Don't feel bad about coming and sharing your

feelings. Thats what we are here for.

Hugs

nne

To the world you might be one person, but to one person you just might be the

world "

" May the Lord Bless you and keep you,

May the Lord Make his face shine upon you, and give you Peace...Forever "

Breast Cancer Patients Soul Mates for Life

http://breastcancerpatientssoulmatesforlife.bravehost.com/

Anxiety Depression and Breast Cancer

http://health.groups.yahoo.com/group/AnxietyDepressionandBreastCancer

Angel Feather Loomer

www.angelfeatherloomer.blogspot.com

The Cancer Club

www.cancerclub.com

> Checking in

>

> Hi everyone,.hope you all are doing okay, and staying cool and safe. We

> are

> suppose to get temps up in the 90's today, and then by next Wed. its

> dropping down to 69. I hope this will be the last of the hot hot weather.

> I've been wanting to get out of my house but just can't take the chance

> with

> the heat. Last week was a hard one with me being so bored. I'm getting

> tired

> of the same'o same'o all the time. I never know what to write here

> because

> there isn't really anything new to talk about, and I hate to just come on

> here and complain. I've got plenty to say about all the stuff I don't

> like.

> L

>

>

>

> Yay! for you you're getting new glasses, and my favorite color

> purple!

> Nice to see you posting Debbi! Glad you are getting better Kate, and the

> hurricane bypassed you and Akiba.

>

> Sorry to hear about the dogs getting in your yard again Sharon, glad your

> grandson was able to protect everyone. Hope your TN is getting better and

> your PC lasts long enough so we don't lose communication from you.

>

> Tina, Teri, and the rest of you I'll have to go back and see what's going

> on

> with you as my memory just flaked on me. Going back to bed for a couple

> hours, so I'll check in later to see if there's anything new.

>

> Thanks for the continued prayers, nne. J

>

> Hugs and love to all, Jackie

____________________________________________________________

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[Guest guest]

I just got through all of my e-mail for the past week and a half.  I haven't been on the computer much.  We got all caught up and two of the TV series that we were behind on (full season behind on both of them - thank goodness for DVR's), and I've been having some mood problems, particularly anxiety problems, so I've been lying on hubby's lap a lot, as that helps keep it at bay.

Thanksgiving was....interesting.  My mother in law had a knee replacement surgery November 9th, so she asked hubby to cook Thanksgiving dinner at her place.  He cooked the pumpkin pie here the night before, was going to cook the applesauce cake, but was stressed out and didn't.  So he gets up Thanksgiving morning, goes over to the in-laws (a block away) to put the turkey in the oven (it was NOT fully thawed), comes back home and after a while, makes the applesauce cake.  We were supposed to be eating at 3 - assuming the turkey got done at 2:30 and 30 minutes to rest, and using that time to make the icing for the cake and bake the cherry pie.  Well, it was a comedy of errors.  Despite there only being 6 of us, my father-in-law decided he would deep fry a turkey breast, too.  Hubby wanted me outside with my father in law while he did this.  Okay, fine.  So I'm sitting there talking to my father in law - I had gone in the house earlier and hubby had gone out and they had turned the heat down - and my father in law commented that they must have turned it way down because the oil was cooling down so fast.  I told him I was smelling a lot of gas, and sure enough, the wind had blown the flame out.  So he got it going again, after a few minutes checked the temperature of the breast, which was 98 degrees, and he told me to go tell hubby it will probably be ready about 2:30.  So I went in to tell hubby, hubby went out and talked to him for a bit, and when hubby came inside, I went out there.   I didn't hear the flame - at all.  So I mentioned it to him.  He was out of gas.  Luckily, he had gas for his grill that he just switched over after a few minutes.  Once the breast was done, I went back in.  I had taken a Klonopin earlier in the day because of anxiety, and I sat down on the couch and started falling asleep.  Hubby kept waking me up, and finally my mother in law said let her sleep, she's obviously tired.  Mother in law was having the same situation as her pain pills made her tired.  So I dozed for quite a while.  Finally the turkey was done at about 4:30 (did I mention that it was still partially frozen?) and there was a flurry of activity baking the sweet potatoes, etc.  I think we finally sat down at the table at 5.  My nephew dropped by just after we finished dessert with his girlfriend, which was nice.  But my poor hubby was exhausted, and stressed out beyond belief.  We still have a HUGE amount of turkey leftover (youngest son ate both the legs), the turkey is still sitting in the fridge waiting for hubby to take the thighs off - and because of that, every time we open the door to the refrigerator, the dog tries to get in and sniff the turkey.  Thank goodness the stuffing and the sweet potatoes are gone, so we only have to deal with the turkey container, and the carcass.  But we still have leftovers of all the desserts.

My mom called me Wednesday morning last week.  Last year, she had a very scary incident where blood flow in her femoral artery was blocked off for more than 24 hours.  She didn't lose her leg because there was enough peripheral blood flow to keep her leg supplied.  She had previously had a femoral bypass, and the graft was blocked, so they had to do another bypass.  They warned her if it happened again, she would likely lose her leg.  Well, it's happened again, but she caught it early this time, so they are doing surgery tomorrow morning to unblock the blockage.  She also has some sort creeping crud, but the pre op doctors said that wouldn't prevent the surgery.  Unfortunately, between this year and last, she used up most of her accumulated vacation, so she is only going to be paid for 3 out of the 4 to 6 weeks she has to be off.