Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 Hi Carolyn I guess I should feel myself very fortunate from the dialogue that's been going on regarding this topic. Since I had a work-related lower back injury before my UC diagnosis, that incident prompted me to get into a better overall exercise pattern. When the UC hit, it set me back for awhile but that was because of the sudden weight loss as well as being anemic. But after I put the weight back on, I started seeing a trainer (I call him the Personal Torturer) and I keep him informed of my health status so that he can help me set the pace. On a good week I'll trek out to the YMCA 3-4 times either to swim or do weights or both sometimes. I bought a road bike two summers ago and go out regularly. I've even entered a fund-raising cycling event set for August this year. It's not a PSC-related event but indirectly, I suppose it could be. The funds support camps for kids with cancer. Overall, I'd say that I consider regular exercise to be somewhat of an insurance policy for my health. It would seem in the case of PSC, we really need to invest in ourselves whatever we can since it'll only help us in the end. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 Is there a PCP who doesn't recommend exercise? I suppose if they didn't you might be able to file a suit for incompetent care. I have been going to Physical Therapy for the last month for joint pain and even though I do feel a bit stronger it hasn't really helped the pain. While pushing those pedals and pulling the stretchy bands I found myself reflecting on how some people would finish a session and be bouncy, ready for more and saying they feel soooo much better and what a rush of energy they got. With me, I finished a session and slumped over to get my coat and escape. No great feeling of accomplishment, no enthusiasm to do it again, no charge of energy, just glad to be done. I comfort myself by thinking "It must be genetic, or programmed into them. It's like a talent, some people are artistic, or musical, or mechanical. I guess some are just given more endorphins or whatever it is that gets turned on by physical exertions" Maybe it would be a good area for some researcher. Whatever it is, people differ and not liking to exercise or not being able to exercise is just another difference. Take Care (1 ungh, 2 ungh, 3 ungh, 4 ungh,) MizKitAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 oops i forgot to tell you guys that i played women's softball up until my diagnosis, could body surf in the pacific ocean the whole day, spent many weekends trekking in joshua tree on the giant rocks, snorkeled in 10 countries without a float of any kind. it's not like i have never been active. but this psc has taken the energy right out of me. i remember laughing when i was first diagnosed i saw on this message board a post from a woman who would take 3 hours to crawl from her couch to her bed. i laughed and cried at the same time. pretty soon i will be that lady. that was only a few years ago. now the pscers seem a lot more fit. any exertion makes me sweat all over. does anyone have that problem?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 pam wrote: > > .... this psc has taken the energy right out of me. i > remember laughing when i was first diagnosed i saw on this message > board a post from a woman who would take 3 hours to crawl from her > couch to her bed. i laughed and cried at the same time. pretty soon i > will be that lady. that was only a few years ago. now the pscers seem > a lot more fit. any exertion makes me sweat all over. does anyone > have that problem?? Oh heavens yes!!! Any exertion leaves me dripping from head to toe. I've always sweated heavily, but this is more than that. Thanks to the years of skin infections, I have to really watch that because it really jump-starts fungal skin infections (and they can move like lightening!). Though never the athletic type, I used to love riding bikes, badminton, and walking. However, if given a choice, I always preferred to curl up in a hammock with a good book, a sandwich and a cat or two! Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 leedeubert wrote: > > If you have gone from just steps to the BR to 1/10 of a mile, that's a > great accomplishment ! > That's at least 52 times more than you were doing !! Lee, you are just the best cheerleader ever!!! I hadn't thought about it like that, and it really packs a wallop from that perspective. Many thanks for the boost!! Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 Carolyn B wrote: > > .... Thanks to the > years of skin infections, I have to really watch that because it really > jump-starts fungal skin infections (and they can move like lightening!) Oops!! I meant to say .... the years of prednisone .... I even read it twice before hitting the send button! Chalk up another one to HE. :-) Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 Anything that improves your physical condition improves your chances post-transplant. Klug was competing at world class levels in snowboarding up to a few months before his transplant. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of CholangitisSuprt@... My Primary Care Physician mentioned that it may be helpul to exercise. Anyone know if that is true? Shaul UC - PSC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 Posted by: "pam" noneenator@... noneenator Thu Mar 15, 2007 4:25 pm (PST) >>oops i forgot to tell you guys that i played women's softball up until >>my diagnosis, could body surf in the pacific ocean the whole day, spent >>many weekends trekking in joshua tree on the giant rocks, snorkeled in 10 countries without a float of any kind. it's not like i have never been active. but this psc has taken the energy right out of me. i remember laughing when i was first diagnosed i saw on this message board a post from a woman who would take 3 hours to crawl from her couch to her bed. i laughed and cried at the same time. pretty soon i will be that lady. that was only a few years ago. now the pscers seem a lot more fit. any exertion makes me sweat all over. does anyone have that problem?? I actually had this problem first before being diagnosed with PSC. Turned out I had another autoimmune disease known as Grave's Disease (hyperthyroidism). In addition to the constant sweating & feeling hot, I had a rapid heart rate, insomnia, weight loss, increased appetite & some other stuff. I learned that PSC & Grave's Disease sometimes occur together. It was actually from my blood tests involving my thyroid disorder that I learned I had another problem (which finally got diagnosed as PSC). Food fight? Enjoy some healthy debatein the Yahoo! Answers Food Drink Q&A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 Hi! My name is Lou Ann and I've been lurking here for about a year. I've gotten a lot of information from all of your posts and my husband now has a clearer understanding of what I have been going through since my diagnosis in 2002. The extreme fatigue hit me like a rock. I had been swimming laps on my lunch hour every day and taking 3 water aerobics classes a week. I knew something was very wrong when I suddenly stopped in the middle of a lap. No gradually slowing down. Just a dead stop in very deep water. Since I have been swimming since before I could walk and was on my high school and college swim teams, I can tell you I have never been more scared in my life! The fatigue is the most crippling aspect of this disease for me. I can have one or two good days when I try not to overdo it but then I'm like a rag doll for two days. I've found I've had to "pick" my activities. I could spend Christmas with my family or my husband's but not both. I can ride my exercycle for 10 minutes 3 times a day or go see the Dead Sea Scrolls exhibit at Union Station but not on the same day and the following day will be spent on the couch. The suggestion of Wellbutrin was a great one for me. I've been taking it for about three months now and it seems to have improved my energy some. I just wish I knew when the down times were going to occur. I like to plan and be in control and this disease has taught me that I have no control whatsoever. So I've learned to do what I can when I can and try not to let the down times get my spirit down too. Not an easy thing for me to do! I'm glad you are all here and thanks for the suggestions and support. Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 hi Lou Ann, Lets talk I too have SCS fot two year. I have been so fatigue at times I try to explain that to my husband and he says exerise that what you need.He doesnt understand how i ache and feel.. I dont understand all what is going on with me either. Can you share some thoughts with me?? i am looking for someone to chat with. from WisconsinLou Ann Kempf wrote: Hi! My name is Lou Ann and I've been lurking here for about a year. I've gotten a lot of information from all of your posts and my husband now has a clearer understanding of what I have been going through since my diagnosis in 2002. The extreme fatigue hit me like a rock. I had been swimming laps on my lunch hour every day and taking 3 water aerobics classes a week. I knew something was very wrong when I suddenly stopped in the middle of a lap. No gradually slowing down. Just a dead stop in very deep water. Since I have been swimming since before I could walk and was on my high school and college swim teams, I can tell you I have never been more scared in my life! The fatigue is the most crippling aspect of this disease for me. I can have one or two good days when I try not to overdo it but then I'm like a rag doll for two days. I've found I've had to "pick" my activities. I could spend Christmas with my family or my husband's but not both. I can ride my exercycle for 10 minutes 3 times a day or go see the Dead Sea Scrolls exhibit at Union Station but not on the same day and the following day will be spent on the couch. The suggestion of Wellbutrin was a great one for me. I've been taking it for about three months now and it seems to have improved my energy some. I just wish I knew when the down times were going to occur. I like to plan and be in control and this disease has taught me that I have no control whatsoever. So I've learned to do what I can when I can and try not to let the down times get my spirit down too. Not an easy thing for me to do! I'm glad you are all here and thanks for the suggestions and support. Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Yahoo! Games. It's here! Your new message!Get new email alerts with the free Yahoo! Toolbar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2007 Report Share Posted April 14, 2007 athan, I have been having chills lately, too, and sometimes accompanied by high fever after the chills. It happened again last night after a chilly walk to my friend's car - just 2 blocks. I moved to Denver for the change in seasons, but I'm starting to think this extended coldness in spring is a bit difficult. I may take up more fleece layers (don't like wool). I was exhausted after 2 hours last night of trying to warm up. I plan to call the nurses on Monday in Dr. Forman's office (my doctor) and ask them about it. Esp. after reading about thyroid and anemia. New to the list, Dana PSC diag. 2006, just completed graduate school (huge stress, huge accomplishment, too!), age 59, Fla. native living in Denver for 22 years. 5 ERCPs, liver biopsy scheduled next Thurs. to rule out cholangiocarcinoma. > > Recently I've been having what I can best describe as " anti-fevers " . > I've been feeling chilled, almost like one does when coming down with a > fever, but when I take my temp it's low... sometimes as low as 96 deg F. > > I've had my thyroid checked and that seems to be OK, but I'm still > curious as to why this is happening. I usually like the cool weather > better than the hot, but this year I'm looking forward to summer! > > athan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Recently I've been having what I can best describe as "anti-fevers" . >>> athan, I have been experiencing this for at least a year. It is very strange as many times my temp is as low as 97 degrees. I haven't mentioned it to my doc - just didn't know how to describe it. So I go from these strange chills to hot flashes from menopause. Sure makes life interesting. I wanted to ask you what your meld is now. You said you are closer to tx now a while back. I had some labs done recently and with those results my meld is 17 which for my region is very close to transplantable. Blessings, Barby - KS we survived the recent snow storm but some of my spring plants didn't. UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007married 27 years , 5 sons, 2 daughters in law, 1 granddaughter born 6/06 and 2 golden retrievers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Hi Dana, I'm sorry that you had to find us, but this is a great group. Your tagline caught my eye- you're having a liver bx to rule out cholangiocarcinoma? CCA grows from the bile ducts, usually the large, extrahepatic ones. They will try to avoid those ducts carefully in a conventional liver biopsy, because that could cause a bile leak and a lot of grief for you (and them). ERCP biopsies are commonly used to try to detect cholangiocarcinoma, or a non-invasive MRI (MRCP). Liver biopsies may help them stage the progression of PSC, but it's just a line through the liver, so it's a local, not a global view. Can you tell us more about this procedure and why they are doing it? Martha (MA) UC, 1979, PSC 1992, asymptomatic --- In , " readalot7777 " > New to the list, > Dana > PSC diag. 2006, just completed graduate school (huge stress, huge > accomplishment, too!), age 59, Fla. native living in Denver for 22 > years. 5 ERCPs, liver biopsy scheduled next Thurs. to rule out > cholangiocarcinoma. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 Hi Jane, I try to do some type of activity each day even when I am sick. When I am sick I do arm exercises only, light 2 pd weights and I do arm curls or arm lifts 3 or 4 times a day, just enough reps to feel it. After 3 or 4 days on antibiotics I will take a small slow walk ( 1/2 to 1 mile) 2 times the first week and then slowly increase when I start feeling better to 3 times a week, and then 4 or 5. I usually do 2.4 to 3.0 on the treadmill but when I have been sick I decrease my speed to 2.0 to 2.6. I haven't read anything about this but judge it by my own body. I don't let myself get too tired or my heart rate get too high. Hope this helps- R. (52) Sarcoid/PF 3/2006 Carlsbad, California Subject: Re: BruceTo: Breathe-Support Date: Saturday, November 15, 2008, 11:23 AM , What is your opinion on when to continue one's exercise program after taking antibiotics? Toodles! Jane UIP/IPF> > > >> > > >> > > > Bruce,> > > >> > > > I have been thinking that I would take all ten days of the > Levaquin> > > just> > > > to make sure I am o,k, The doctor really didn't say.> > > >> > > > Toodles> > > >> > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgilr l> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 -denise great job; my goodness girl you keep going. i'm good on a healthy day ha ha at 2 speed and 15 to 20 mins. goal is to get back even if this week it is once.. Goodles to you... patti -- In Breathe-Support , denise randel wrote: > > Hi Jane, >    I try to do some type of activity each day even when I am sick. When I am sick I do arm exercises only, light 2 pd weights and I do arm curls or arm lifts 3  or 4  times a day, just enough reps to feel it. After 3 or 4 days on antibiotics I will take a small slow walk ( 1/2 to 1 mile) 2 times the first week and then slowly increase when I start feeling better to 3 times a week, and then 4 or 5. I usually do 2.4 to 3.0 on the treadmill but when I have been sick I decrease my speed to 2.0 to 2.6. I haven't read anything about  this but judge it by my own b > ody. I don't let myself get too tired or my heart rate get too high. Hope this helps- >  R. (52) Sarcoid/PF 3/2006  Carlsbad, California > > > > > > Subject: Re: Bruce > To: Breathe-Support > Date: Saturday, November 15, 2008, 11:23 AM > > > > > > > > , > What is your opinion on when to continue one's exercise program after taking antibiotics? > Toodles! > Jane UIP/IPF > > > > > > > > > > > > > > > > Bruce, > > > > > > > > > > I have been thinking that I would take all ten days of the > > Levaquin > > > > just > > > > > to make sure I am o,k, The doctor really didn't say. > > > > > > > > > > Toodles > > > > > > > > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgilr l > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 Thanks, Toodles Jane UIP/IPF > > > > >> > > > >> > > > > Bruce,> > > > >> > > > > I have been thinking that I would take all ten days of the > > Levaquin> > > > just> > > > > to make sure I am o,k, The doctor really didn't say.> > > > >> > > > > Toodles> > > > >> > > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgilr l> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2008 Report Share Posted November 16, 2008 good exercise program Pink Joyce IPF 3/06 Pennsylvania From: Jane <jjarrett (AT) optilink (DOT) us>Subject: Re: BruceTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 15, 2008, 11:23 AM , What is your opinion on when to continue one's exercise program after taking antibiotics? Toodles! Jane UIP/IPF> > > >> > > >> > > > Bruce,> > > >> > > > I have been thinking that I would take all ten days of the > Levaquin> > > just> > > > to make sure I am o,k, The doctor really didn't say.> > > >> > > > Toodles> > > >> > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgilr l> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.