Aa
lanier
Maybe I was a little depressive with my first question, Please anyone have any opinions about the first ever blog I have opened up too. It is so difficult to try and figure this whole chronic hcv thing out, it's like my symptoms surfaced out of the blue 2 years ago and down hill from there.... ant advice or information will be greatly appreciated. My gastro is a blank slate and seems offended when I ask questions. Thank you so much
lanier
lanier
Great to meet you too. I also live in Fl., in Ocala. Born In Lauderdale, moved young tho, than spent years in Colo. and NC. I lived in Maggie Valley, @ 40 miles from Ashville, LOVE it there. Came back mainly for sick sister, and here I am. But hate Fl.! Bugs and sweat and no seasons!
LOVE riding, such a mind saver for me, I weigh @ 128 and ride a Fat Boy Harley ( 850lbs.) and with just symptoms/fatigue it has already cut down my riding days. Figure I may be parking it during tx :{
Your @ my age also (49) and hate seeing you so depressed and all, we're too young for this :}
Very sorry @ your brother, have watched my sister suffer so much past 7 years, it's hard. As I'd said, it all makes me far more appreciative of my life and how good I really have it, and I am not rich in $$, but all else.
Anyhow (think we should be on the other side for 'chatting'?) . I haven't ever done any tx yet, start next Tues. :{ :{ REALLY scared but this forum has taken me from TERRIFIED and little knowledge to only scared and much more educated. I am 2b, stage 2-3 and doing 24 weeks, so I do know I am 'blessed' compared to so many here. Treating at Shands in Gainseville. Without reading thru all the above again, weren't you 2b also? How long, many times have you done tx? Did you have the depression/pyschological problems before tx? Very glad you have found a new Dr. and as for the med's......you yourself know if you are 'over medicating' and that isn't good if you are. I can see where staying 'numb' is appealing tho! I think everything we do right now (meds) we need to keep a check on. IF needed, be sure your honest with your Dr. I am going to discuss my 1-2 Xanax (.25, lowest does available) with him and see if something else I can use thru this after reading about them here. Funny, when I told my trial nurse (coordinator) that " I do not want to come out of this hooked on med's", she said "honey, let it go! your going to have to throw all that out the window for now " (my fear of med.s, worries) "if your suffering, you have to tell us and take meds!". bearing in mind I have no history of addiction.That's a whole different ball game. Anyhow, keep a check on all you do and TALK to the Dr.s I am quite concerned over the possible depression with this and guess I can't rule out AD's. See the post on acupunture, it could help some of your problems.
And yes, it is frustrating when they don't really know what you-we are going thru, which is why this site is so great. "walk in my shoes" and all these great folks are walking in the same shoes, just different geno's and sides :}
I better quit babbling for now.especially on this 'side'. Oh, the herbs.....I try anything 'natural-organic' before going on to meds (as I did with the anxiety before) but off all now as per tx. In much researching, my opinion is the only 'cure' possible for us today is the meds/chemo. Diet, herbs, etc. can help us feel better, handle this virus but not rid ourselfs of it. And I want it GONE, not 'handled'. Learning from others here, it could be dangerous to play around with other unproven methods, especially for those with fibrosis, cirhosis.
Fill me in on your 'case' and be talking to you more here.Hope your feeling better.
LL
LOVE riding, such a mind saver for me, I weigh @ 128 and ride a Fat Boy Harley ( 850lbs.) and with just symptoms/fatigue it has already cut down my riding days. Figure I may be parking it during tx :{
Your @ my age also (49) and hate seeing you so depressed and all, we're too young for this :}
Very sorry @ your brother, have watched my sister suffer so much past 7 years, it's hard. As I'd said, it all makes me far more appreciative of my life and how good I really have it, and I am not rich in $$, but all else.
Anyhow (think we should be on the other side for 'chatting'?) . I haven't ever done any tx yet, start next Tues. :{ :{ REALLY scared but this forum has taken me from TERRIFIED and little knowledge to only scared and much more educated. I am 2b, stage 2-3 and doing 24 weeks, so I do know I am 'blessed' compared to so many here. Treating at Shands in Gainseville. Without reading thru all the above again, weren't you 2b also? How long, many times have you done tx? Did you have the depression/pyschological problems before tx? Very glad you have found a new Dr. and as for the med's......you yourself know if you are 'over medicating' and that isn't good if you are. I can see where staying 'numb' is appealing tho! I think everything we do right now (meds) we need to keep a check on. IF needed, be sure your honest with your Dr. I am going to discuss my 1-2 Xanax (.25, lowest does available) with him and see if something else I can use thru this after reading about them here. Funny, when I told my trial nurse (coordinator) that " I do not want to come out of this hooked on med's", she said "honey, let it go! your going to have to throw all that out the window for now " (my fear of med.s, worries) "if your suffering, you have to tell us and take meds!". bearing in mind I have no history of addiction.That's a whole different ball game. Anyhow, keep a check on all you do and TALK to the Dr.s I am quite concerned over the possible depression with this and guess I can't rule out AD's. See the post on acupunture, it could help some of your problems.
And yes, it is frustrating when they don't really know what you-we are going thru, which is why this site is so great. "walk in my shoes" and all these great folks are walking in the same shoes, just different geno's and sides :}
I better quit babbling for now.especially on this 'side'. Oh, the herbs.....I try anything 'natural-organic' before going on to meds (as I did with the anxiety before) but off all now as per tx. In much researching, my opinion is the only 'cure' possible for us today is the meds/chemo. Diet, herbs, etc. can help us feel better, handle this virus but not rid ourselfs of it. And I want it GONE, not 'handled'. Learning from others here, it could be dangerous to play around with other unproven methods, especially for those with fibrosis, cirhosis.
Fill me in on your 'case' and be talking to you more here.Hope your feeling better.
LL
Lady Lauri
Good luck on your treatment, when do you start again? and do you know your viral load? with regards to the herbals what did you mean? green tea and milk thistle? things like that if you have a chance will you tell me.
I will be here to cheer you on, how many weeks are you going for ( 6mths) or less?
this blog is a god scent, I am so glad to meet you.
Lani
Good luck on your treatment, when do you start again? and do you know your viral load? with regards to the herbals what did you mean? green tea and milk thistle? things like that if you have a chance will you tell me.
I will be here to cheer you on, how many weeks are you going for ( 6mths) or less?
this blog is a god scent, I am so glad to meet you.
Lani
Lady Lauri
A New and Good Friend!! a blessing worht more than so many things. You and I are kindrid spirits and it seems we have been through many volumes of loss and pain. my brother Scott who was a great pilot and adventurer killed himself in a plane crash in the everglades. He was fly just a little to low and his vintage engine gave out at the wrong time. I have these and so many more who have left before me, but like you I honor them and keep them alive by talking about them and sharing the joy they brought my life.
Anyway I am so proud you can ride a harley one thing I have never done....well maybe one day if I can whip all this I'll give it a shot. NC I love it up that way, Ashville and Biltmore house and gardens.
The doctor I went to today was refreshing, we actually argued. I appreciate that so much. I can not be in one sided conversations. His advice was exactly what was expected and what our Ausie friend has long ago said also. I need of course to have my viral load re-checked and need to see a docotr about this depression. I told him I had not worked for 2 years and had applied for SSDI and then we really had a debate, it seems so standard for these people on the outside looking in to say..."do something else your qualified" and it pisses me off to the core as if I want to be in the place I am now. I cannot DO ANYTHING for more than 2 hours in a day physically I am spent and yes, I am also emotionally shot. I have the concentration of a small reptile. I really do, it is one thing to sit here and write, but to process thoughts and facts in the "real" world where a report or assesment or RESULT is required FORGET IT.
So I'll call and make the appointment to get on anti depressents and get some more of my blood drawn and try to cut back on the drugs. another debate this doctor had with me to which he was correct I am taking 2 meds that add to the pyschological symptoms I alreadys have no matter how low the dose. I agree and I knew, but I am unable to get the basic things in a day done at this point done without these meds. I am sorry for the weakness, but it is a trade off I have to make.
A New and Good Friend!! a blessing worht more than so many things. You and I are kindrid spirits and it seems we have been through many volumes of loss and pain. my brother Scott who was a great pilot and adventurer killed himself in a plane crash in the everglades. He was fly just a little to low and his vintage engine gave out at the wrong time. I have these and so many more who have left before me, but like you I honor them and keep them alive by talking about them and sharing the joy they brought my life.
Anyway I am so proud you can ride a harley one thing I have never done....well maybe one day if I can whip all this I'll give it a shot. NC I love it up that way, Ashville and Biltmore house and gardens.
The doctor I went to today was refreshing, we actually argued. I appreciate that so much. I can not be in one sided conversations. His advice was exactly what was expected and what our Ausie friend has long ago said also. I need of course to have my viral load re-checked and need to see a docotr about this depression. I told him I had not worked for 2 years and had applied for SSDI and then we really had a debate, it seems so standard for these people on the outside looking in to say..."do something else your qualified" and it pisses me off to the core as if I want to be in the place I am now. I cannot DO ANYTHING for more than 2 hours in a day physically I am spent and yes, I am also emotionally shot. I have the concentration of a small reptile. I really do, it is one thing to sit here and write, but to process thoughts and facts in the "real" world where a report or assesment or RESULT is required FORGET IT.
So I'll call and make the appointment to get on anti depressents and get some more of my blood drawn and try to cut back on the drugs. another debate this doctor had with me to which he was correct I am taking 2 meds that add to the pyschological symptoms I alreadys have no matter how low the dose. I agree and I knew, but I am unable to get the basic things in a day done at this point done without these meds. I am sorry for the weakness, but it is a trade off I have to make.
Great bunch of post here, from Xanax to snakes to loss of loved ones and on. Many good comments here. I'm going to jump in on ...Xanax, symptoms. About 4 years ago I started having anxiety..BAD! Ms. ' tough girl, Harley riding, save the world here' was saying...what the h*ll is this ??? My Dr., after checking out all, say's 'can you just TRY this med'. ? (I rarely took any meds, he knew that.) I only took (take) 1-2 .25 mg. a day & only some days, not every, (lowest dose) and it helped greatly while my mind began beating these odd anxiety episodes. It got so bad I could not even drive to NC anymore (a 4-5 times a year thing for me) and it was ruining my QoL -just in the anxiety attacks. I have come a long way in this and could not have done it without that little 'emergency' pill at times, and a LOT of mind 'training'. Anxiety, panic attacks are awful, no real answer for them and even the toughest, strongest get them. Now I take only to sleep (put my mind to rest) or more a bit now since my dx last May. I also made a point to not take every day, skip days, not have in my body every day. That said....as much as they can help just calm you, take that edge off, what else can we use after reading all this? They gave me Valium last mth., out of 90 I have taken 1 half of 1 pill! I do know that 1st shot day I will need something and they said take what I take. I have a great Hep. Dr. at Shands too. I guess what I take is very low and to me, AD's seem much 'riskier' for the mind. (remember , new here, still learning thru you all.) I feel the key to anything you use, take is ......AS prescribed and even than, not every day as much as possible. I worry more about having to do an AD and than stop, as that is something you can't take only 'when needed'.
Lanier, I truly understand needing 'help' to stay calm, less worried, stressed, but I think we better look for a different drug as I never knew what they are all saying about Xanax. ( & trust me, all the herbs, natural remedys , meditation on this earth counldn't stop them when I went thru it!) Like you, my symptons got bad past 2-3 years (2b, stage 2-3 fib.) and I was a hyper, productive woman It kill's me not to be productive in something every day! A couch potatoe is just not me :( I was a weekend warrior drinker and quit all immediatly also. My 2 cents on drinking is, I miss it too, but why add fuel to fire, tho don't disagree with the special occassion glass of wine point either. I do feel a 'loss of spirit' in many ways, and like you, many here, have had some huge loss's past few years (a friends child, my best friend of 20 yrs. died at 40, my sis in stage 4 cancer, chemo for 7 years now) but I always coped and also blew my symptoms off to loss, stress, etc. BUT... I am a very positive person and if I understand right, your type 2 (but have other health problems) and our chances of SVR are so much greater.(I'll find and read your other post) I keep my 'spirit' up by remembering my friend, the baby,Cole, my sis and remembering that I have a fighting chance. Of course, once tx starts you can all repeat this to me, LOL. But even in some loss of spirit, I have gained insight, more appreciation of getting my life back and using it more wisely and even in meeting/reading about all these great people. Also in teaching the young NOT to make stupid mistakes that come back to haunt you , as I have carried this 30 years from stupidity, lack of awareness when young! (love your comment, Cocksparrow, @ 'lots of us got going to or coming from the concerts' :) Fun, but stupid days!
Enjoyed all the stuff in this thread :)
Hope you get to building your spirit back up, Lanier. many of your post are very thoughtful, kind ones. YOU CAN DO IT! (and again, repeat to me in 4 weeks:)
P.S. LOVE Jimi, Stevie Ray! LL
Lanier, I truly understand needing 'help' to stay calm, less worried, stressed, but I think we better look for a different drug as I never knew what they are all saying about Xanax. ( & trust me, all the herbs, natural remedys , meditation on this earth counldn't stop them when I went thru it!) Like you, my symptons got bad past 2-3 years (2b, stage 2-3 fib.) and I was a hyper, productive woman It kill's me not to be productive in something every day! A couch potatoe is just not me :( I was a weekend warrior drinker and quit all immediatly also. My 2 cents on drinking is, I miss it too, but why add fuel to fire, tho don't disagree with the special occassion glass of wine point either. I do feel a 'loss of spirit' in many ways, and like you, many here, have had some huge loss's past few years (a friends child, my best friend of 20 yrs. died at 40, my sis in stage 4 cancer, chemo for 7 years now) but I always coped and also blew my symptoms off to loss, stress, etc. BUT... I am a very positive person and if I understand right, your type 2 (but have other health problems) and our chances of SVR are so much greater.(I'll find and read your other post) I keep my 'spirit' up by remembering my friend, the baby,Cole, my sis and remembering that I have a fighting chance. Of course, once tx starts you can all repeat this to me, LOL. But even in some loss of spirit, I have gained insight, more appreciation of getting my life back and using it more wisely and even in meeting/reading about all these great people. Also in teaching the young NOT to make stupid mistakes that come back to haunt you , as I have carried this 30 years from stupidity, lack of awareness when young! (love your comment, Cocksparrow, @ 'lots of us got going to or coming from the concerts' :) Fun, but stupid days!
Enjoyed all the stuff in this thread :)
Hope you get to building your spirit back up, Lanier. many of your post are very thoughtful, kind ones. YOU CAN DO IT! (and again, repeat to me in 4 weeks:)
P.S. LOVE Jimi, Stevie Ray! LL
Hey friend,
well I have a brother who had his gallbladder out years ago, he is like 20 years older than me ( I am the last of 7) and they cut him stem to stern...be happy they can do it now without any "marks" on the old torso so to speak. It is quite an interest procedure, ask about how they do it now.
I wonder how many times you have tried to cope with the peg interferon and Ribo ? I got all my meds and files stacked up here and I have not taken a sub-shot since the first week in May and I feel every bit the same today as I did the day I threw away that last shot...money down the tubes.
I think I may need a blood thinner warfan-coumadin, I think I may have a genetic disorder related to the markers in my PT. cheers from the crowd...lol who knows though, but this what I have finally processed regarding my low platelet count and PT-INR issues. My Mum was on these meds before she died, but there were so many other things happening, it's all a fog.
blumbering and fog 2 new terms I live my life with...lol
thanks for the post have a great day, let me hear from you when you have time.
Regards
Lani
well I have a brother who had his gallbladder out years ago, he is like 20 years older than me ( I am the last of 7) and they cut him stem to stern...be happy they can do it now without any "marks" on the old torso so to speak. It is quite an interest procedure, ask about how they do it now.
I wonder how many times you have tried to cope with the peg interferon and Ribo ? I got all my meds and files stacked up here and I have not taken a sub-shot since the first week in May and I feel every bit the same today as I did the day I threw away that last shot...money down the tubes.
I think I may need a blood thinner warfan-coumadin, I think I may have a genetic disorder related to the markers in my PT. cheers from the crowd...lol who knows though, but this what I have finally processed regarding my low platelet count and PT-INR issues. My Mum was on these meds before she died, but there were so many other things happening, it's all a fog.
blumbering and fog 2 new terms I live my life with...lol
thanks for the post have a great day, let me hear from you when you have time.
Regards
Lani
Thank you for your kind words. My last gastro was in pem-pines Dr catherine Kosche. had a time with her. she could not explain what standard was used for my liver biopsy and although I "assumed" it was metivar I do not like to assume anything anymore health wise. I had my biobsy at memorial west...so HEY NEIGHBOR. I am going to doctor in hoolywood today a nurse who is also an attorney and also a friend who callsw me back when I ask questions!!! recommended this one, we have allot in common, so I hope its a start. But I'm feeling my oates today BIGTIME. I DO NOT WANT TO GO ANYWHERE. I read all my information and say I feel like a "bumbling fool". I think I have other things going on and now I feel so stupid I did not catch on sooner. I will kkep the Cleveland clinic on the list and give them a call after todays meeting if it does not go well. I am in a mood to cry and ask questions and that can **** many healthcare professionals off, especially doctors so who knows. Hey I like your log in I saw the CIR at the mirage in vegas way back in the day when they started, now we have them everywhere. I am so jelous and proud at the same time of what those atheletes can do with their bodies...lol
Thanks for the kind words again.
Thanks for the kind words again.
Wish it would rain here, we got a bit of drought happening down here.
All i can say is focus on the things you can do something about. See your new Docs and be the patient from h=ll. I tend to see Doctors as my medical advisors. Use their knowledge and experience and then make my own mind up.
I go back to my GI in Oct to see if I get to keep my gall bladder. I wont be just taking his word it that it needs to come out as i like it where it is. But i'll worry about that if and when thats what he suggests. I want to talk him in to teating HCV again anyway.
You just gotta keep fighten, thats all we can do.
Hope everything works out for ya.
All the Best
CS
All i can say is focus on the things you can do something about. See your new Docs and be the patient from h=ll. I tend to see Doctors as my medical advisors. Use their knowledge and experience and then make my own mind up.
I go back to my GI in Oct to see if I get to keep my gall bladder. I wont be just taking his word it that it needs to come out as i like it where it is. But i'll worry about that if and when thats what he suggests. I want to talk him in to teating HCV again anyway.
You just gotta keep fighten, thats all we can do.
Hope everything works out for ya.
All the Best
CS
I too live in Ft. Lauderdale, and would recommend seeing Dr's at the Cleveland Clinic in Weston, FL. It has been my experience with them as being abundantly compassionate and knowledgeable. I can't remember who is the Departmental Head, but just ask them to connect you to the hepatology dept or the infectious disease dept. or the it could be called the Internal medicine Dept, and then ask them who is over that Dept. Or you can call and make an appt. with Dr. Eugene Schiff and his team at the University of Miami. They are one of the nation's leading in this field and you would be in great hands. There's also someone else that I can't remember in Pembroke Pines who is really great that is a hepatologist. You might want to start a thread here and on the community side asking for referrals for Dr's in or close to your/our area. I have two dogs myself...chihuahua's who, trust me, had it not been for them in my life...I can't imagine where I'd be right now! Thank Heavenly Father for them!!!!!! Until then take care and let me know if I can help you out with any other info., OK?
Yours in Christ,
Rick
Yours in Christ,
Rick
It's a good day to go to the doctor, for if I did not have 2 dogs and 2 cats I think I might not get up again. Rain here it is About time. MY INR is 0.9 I do not even know how I walk around. I guess HCV is not the only health issue on my plate. All the abnormalities in my blood work are related to Platelets (RBC's) and my latest results show my platelets up some, which is great, but the size and h20 content are a mess. It's a drudgery trying to figure this out. All the people treating on this blog KEEP GOING, never misunderstand that if you read somene is having results that you might have the same, it's really that that person may have more than just this virus. I also see I have a cyst on one of my ovaries, something to look forward too. the greyness in my life is NOT for any of HCV clients who are treating to think might happen to them, for we all start out with different gentic "stuff" and that along with the toxins of life get where we are today.
Lani
Lani
Your very kind all thoughts with my MOM in them are positives, it is a matter of cutting corners as well as ignorance. these people do not pass these organisms on with mailice, I never sued the hospital could have racked up some cash for my mothers death. I understand it happens from my side, it seems to be the lack of real concept and the total shortage of the CNA, MA and other healthcare people who are forced to do hardest parts or healthcare, the hands on parts and have a long list of clients to get through in a short amount of time. It is an abomination. Do not get me wrong there are plenty of doctors and nurses and pa's who care and jump in to help and make sure things like iv sites and cath's are cared for, but in a hospital setting all bets are off, in my opinion. and a SNF is worse, these facilities are overseen by mostly LPN saff and don't get me started on that PROBLEM.
So now I will get off the soapbox and say thank you for your support and understanding with regard to my "coping" meds. and your remarks about "bumbling" you made my day, for that is one of the best words I could use to describe how I feel when I look at my life today....bumbling
As to the doctor "refusing" no docotr ever refused, but a few have told me "I don't know" now this is fine in a subjective clinical question, however with regards to medical charted test results I will never accept this. I am a pain in healthcares .....neck. LOL have a great day wherever you are. thanks I hope to write you again.
Lani
So now I will get off the soapbox and say thank you for your support and understanding with regard to my "coping" meds. and your remarks about "bumbling" you made my day, for that is one of the best words I could use to describe how I feel when I look at my life today....bumbling
As to the doctor "refusing" no docotr ever refused, but a few have told me "I don't know" now this is fine in a subjective clinical question, however with regards to medical charted test results I will never accept this. I am a pain in healthcares .....neck. LOL have a great day wherever you are. thanks I hope to write you again.
Lani
I'm so sorry about your Mom- it's awful when the people that should be helping make a mistake like that. Unfortunately, there are those that cut corners even in a situation as crucial as health care.
I hope you can find more liver-friendly drugs to replace those you're on. I understand the feeling of not being able to cope without certain meds. Since relapsing back into opiate addiction a few years ago, I've been on a medication that is nontoxic to the liver but really has some bothersome side effects. I've gained weight that is very hard to lose, retain water, am sleepy as h=ll at the most unconvenient times and my teeth are getting cavities faster than the dentist can fill em. But I am too scared to try to live without this med. So I know how you feel and it doesn't make you a wimp- well if it does then I'm one too I guess- lol.
I also relate to reduced mental clarity and not getting much done- I feel like I spend my days bumbling around doing nothing- where I used to wake up and breeze around working, raising little ones, cooking and cleaning like it was nothing. I don't know if it's the Hep C or the medication- all I know is I hate it. But you're not alone. If your doctor won't listen to you, find another one. I know it's a pain in the @ss and the last thing you feel like dealing with- but no doctor should refuse to answer your ?'s, esp when you're on meds that can hurt your liver AND you have Hep C. I hope all goes well for you in sorting all this out and feeling better.
Bst wishes,
Dee
I hope you can find more liver-friendly drugs to replace those you're on. I understand the feeling of not being able to cope without certain meds. Since relapsing back into opiate addiction a few years ago, I've been on a medication that is nontoxic to the liver but really has some bothersome side effects. I've gained weight that is very hard to lose, retain water, am sleepy as h=ll at the most unconvenient times and my teeth are getting cavities faster than the dentist can fill em. But I am too scared to try to live without this med. So I know how you feel and it doesn't make you a wimp- well if it does then I'm one too I guess- lol.
I also relate to reduced mental clarity and not getting much done- I feel like I spend my days bumbling around doing nothing- where I used to wake up and breeze around working, raising little ones, cooking and cleaning like it was nothing. I don't know if it's the Hep C or the medication- all I know is I hate it. But you're not alone. If your doctor won't listen to you, find another one. I know it's a pain in the @ss and the last thing you feel like dealing with- but no doctor should refuse to answer your ?'s, esp when you're on meds that can hurt your liver AND you have Hep C. I hope all goes well for you in sorting all this out and feeling better.
Bst wishes,
Dee
yes, you have some lovely water in your area, if your near the coast? and you have a few coasts to choose from don't you mate.
Mash Harbor in the Caribean, its a small isle where almost everyone is related and it coast a fortune to buy your staples, but if you stay on your sailboat and eat hogmouth snapper and lobster what else much do you need. and the water is as clear as it "used" to be here in the keys. Marathon is still a great place to dive and fish, but the water has suufered the population. It is packed like a sardine can with 3 million people. ;)
Wow B-Bunch really backed up your idea about my "drug addiction" I know I am hooked, and use the alprozolam to "cope" which pretty much means "zone out"
I did fire my last gastro and I am going to new doctor tomorrow, so we'll see. I am greatful there is no big circles on the ct pictures of my liver scan, greatful in every sense of the word. But the pain is there and I cannot bend over to the floor without a real pressure and after I have in the morning by the 3-5th time I just stop, it is that uncomfortable.
I have long thought I have autoimmune issues due to the plethera of malidies I have had, and I am going to follow that path.
Good grief, the re-treating info....thank you for these facts.
My education in healthcare to which I always loved in college microbiology, chemistry, anatomy physiology, all felt like home. Now I think they could be a curse, for self awareness can play tricks on the mind even as it also helps us. I could not save my own mother from becoming a statistic and dying at the hands of hospital care. Universal precations the first thing you learn, are often skipped and as a result micro organisims become stonger and we end of with MYRSA that changes and evolves as fast as you develop a antibiotic for it. tell everyone you know....WASH YOUR HANDS...CHANGE YOUR GLOVES... SAVE A LIFE.
Sorry this still aches me to the marrow.
Lani
Mash Harbor in the Caribean, its a small isle where almost everyone is related and it coast a fortune to buy your staples, but if you stay on your sailboat and eat hogmouth snapper and lobster what else much do you need. and the water is as clear as it "used" to be here in the keys. Marathon is still a great place to dive and fish, but the water has suufered the population. It is packed like a sardine can with 3 million people. ;)
Wow B-Bunch really backed up your idea about my "drug addiction" I know I am hooked, and use the alprozolam to "cope" which pretty much means "zone out"
I did fire my last gastro and I am going to new doctor tomorrow, so we'll see. I am greatful there is no big circles on the ct pictures of my liver scan, greatful in every sense of the word. But the pain is there and I cannot bend over to the floor without a real pressure and after I have in the morning by the 3-5th time I just stop, it is that uncomfortable.
I have long thought I have autoimmune issues due to the plethera of malidies I have had, and I am going to follow that path.
Good grief, the re-treating info....thank you for these facts.
My education in healthcare to which I always loved in college microbiology, chemistry, anatomy physiology, all felt like home. Now I think they could be a curse, for self awareness can play tricks on the mind even as it also helps us. I could not save my own mother from becoming a statistic and dying at the hands of hospital care. Universal precations the first thing you learn, are often skipped and as a result micro organisims become stonger and we end of with MYRSA that changes and evolves as fast as you develop a antibiotic for it. tell everyone you know....WASH YOUR HANDS...CHANGE YOUR GLOVES... SAVE A LIFE.
Sorry this still aches me to the marrow.
Lani
Wow this is a real eye opener, thank you for telling me of your experience. I have never seen this with such a low dose, but I am definitely a candidate to the "addicition" "withdrawal" category. I have taken alprozolam for just about 2 years.....good grief. If I can get my health up enough to get out and about, I would love to take some yoga or maybe get some reflexology going. I just do not go out much AT ALL since Feb2007 when I started treatment and by May 2007 I was in a vertical dive and in bed or sitting the reclkiner 80% of the time...can we say no quality of life. I thank you kindly for your help, I will process this and go to a new doctor tomorrow and hope I can finaly find one who will take the time to read my chart and answer my questions and not tell me "they do not know" on generic medical test result questions I ask. I am a pain in the but to healthcare, I know it, but like our Ausie mate said it is MY LIVER and I can't fry up another one. lol
CockSparrow is right about your generic Xanax (alprozolam). I thought the same as you. I was on 1/2 a miligram to 1 miligram when I was on TX. I thought it wasn't going to be a problem either just like you. I just got back from the hospital after a 5 day stay because I tried to stop taking alprozolam by myself and had severe withdrawal, so severe I had a psychotic episode that lasted 5 days until a family member finally called 911 to get me to the hospital. Girrrrl, it wasn't pretty. You are playing with fire. Try not to kid yourself. Get off that drug now. p.s. Check into a hospital first to moniter your withdrawal. Some of your depression, sweating, shaking, and insomnia and anxiety is caused by Alprozolam. Please think about finding other ways to cope than by taking more drugs. More drugs baaaaaad. Withdrawal baaaaad. No more Alprozolam goooood.
Yeh already mentioned Priscilla, not that anyones raced out and bought the frock. Not that i am aware of at least. Be funny though.
Both forums seem to be merging if you ask me, so i would be to concerned about being off topic.
Ladywhy
Thanks for reminding me to get some paper. I will try and keep a log of the trip.
CS
Both forums seem to be merging if you ask me, so i would be to concerned about being off topic.
Ladywhy
Thanks for reminding me to get some paper. I will try and keep a log of the trip.
CS
lanier - I have quite a few symptoms since my treatment that have not gone away??
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ReTreating may make these symptoms worse. If you are going treat again make sure you discuss this with your Doc and do your own research. IFN has a habit of making pre existing conditions worse.
lanier - I go on tuesday to this new specialist so I'll ask for depression medication and also discuss treatment options. If he cannot answer questions and hold a conversation with me on the same level then I will be back at square one
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Not really back at square one. It just means you need to shop around till you find a Dr you like. Dont give up. Remember Its your Liver, your Disease, NOT theirs.
lanier - and I do not understand why my ct (I have not gotten my copies yet) according to the person who called me, showed my liver "normal"
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This is acually a good thing. means no steatosis and no cirrhosis, even though a biopsy is the only accurate way to determine this. Its a little strange that our liver isnt supposed to feel pain yet many of us experience URQ pain. Makes you wonder what nerve is involved. But you probably no more about this than me.
You may want to check whether you have any AutoImmune anti bodies as AI may explain some of your symptoms.
No tv, no phones just the sea and your spear gun. I want my daughter to experience that. Have you ever been to any of the Abico Ilses there are many that are worthwhile.
-----------------------------------------------------------------
I so like the sound of this. I havnt been to any Abico Ilses, dont even know where they are - Caribbean I guess. Should try and spend some time on the ones we have here though.
Anyway wish you well and dont let the virus or Doctors get you down.
I am really sorry you have to go thru all this, life sux sometimes.
CS
-------------------------------------------------------------------------
ReTreating may make these symptoms worse. If you are going treat again make sure you discuss this with your Doc and do your own research. IFN has a habit of making pre existing conditions worse.
lanier - I go on tuesday to this new specialist so I'll ask for depression medication and also discuss treatment options. If he cannot answer questions and hold a conversation with me on the same level then I will be back at square one
------------------------------------------------------------------------
Not really back at square one. It just means you need to shop around till you find a Dr you like. Dont give up. Remember Its your Liver, your Disease, NOT theirs.
lanier - and I do not understand why my ct (I have not gotten my copies yet) according to the person who called me, showed my liver "normal"
--------------------------------------------------------------------------
This is acually a good thing. means no steatosis and no cirrhosis, even though a biopsy is the only accurate way to determine this. Its a little strange that our liver isnt supposed to feel pain yet many of us experience URQ pain. Makes you wonder what nerve is involved. But you probably no more about this than me.
You may want to check whether you have any AutoImmune anti bodies as AI may explain some of your symptoms.
No tv, no phones just the sea and your spear gun. I want my daughter to experience that. Have you ever been to any of the Abico Ilses there are many that are worthwhile.
-----------------------------------------------------------------
I so like the sound of this. I havnt been to any Abico Ilses, dont even know where they are - Caribbean I guess. Should try and spend some time on the ones we have here though.
Anyway wish you well and dont let the virus or Doctors get you down.
I am really sorry you have to go thru all this, life sux sometimes.
CS
Your a sweetheart thank you for the advie, I never wrote on blogs or went to chat rooms in my life. I e-mail friends but never anything like this. Sincere thanks
Lani
Lani
yeah, sometimes it's best to just agree to disagree, I think the "argument" threads would be a helluvalot shorter if people would just simply do that once the argument becomes circular...ha ha!
I love Australia, I've had so many friends from there, and I went there once, to Sydney mostly, which barely whetted my appetite for the place of course, I so envy you being able to travel wide in the country...I've followed Austrailian cinema for quite a long time, so I've seen a lot from those movies of the outback, etc...but don't think I'm intimating that you'll be traveling around in a big Lavender bus like Priscilla, Queen of the Desert, ha ha ha ha! One of the funniest movies ever!..
.I really like Hugo Weaving and Guy Pierce, maybe you've seen it, but I'd really recommend "The Proposition" with Pierce, great Aussie movie if you ask me, and no one did, lol...well, I forgot what side of the forum I'm on, but I have a feeling I'm on the straight business side, which means, I'm being far too chatty and off topic, better go before the sheriff finds me out, have a really great trip, and please let us know about it!!!!
I love Australia, I've had so many friends from there, and I went there once, to Sydney mostly, which barely whetted my appetite for the place of course, I so envy you being able to travel wide in the country...I've followed Austrailian cinema for quite a long time, so I've seen a lot from those movies of the outback, etc...but don't think I'm intimating that you'll be traveling around in a big Lavender bus like Priscilla, Queen of the Desert, ha ha ha ha! One of the funniest movies ever!..
.I really like Hugo Weaving and Guy Pierce, maybe you've seen it, but I'd really recommend "The Proposition" with Pierce, great Aussie movie if you ask me, and no one did, lol...well, I forgot what side of the forum I'm on, but I have a feeling I'm on the straight business side, which means, I'm being far too chatty and off topic, better go before the sheriff finds me out, have a really great trip, and please let us know about it!!!!
Lanier: Cocksparrow kind of cleared it up for me, but like he said, my post about alcohol was not directed at you, I was merely taking issue w/ what he posted (that graph in particular) on the "proper" amount to drink, I was not critiquing you in any way...also, I was only agreeing w/ him on what he said about sometimes drugs "blowing back" on you...
sometimes when youre blogging, there is a "reference" all it might conern in a post, anybody that might be involved in the discussion, but that doesn't necessarily mean that I'm directly speaking to everyone listed in the name line...
One thing I will say though, there are people from all over who contribute on these forums, from all walks of life, with varying types of personalities...it's probably a good thing not to be too thin-skinned on any blog, because then it tends to be hard to stay there and pick up valuable info and support...there are also people who are on sometimes mind-altering drugs, etc, that tend to make them grouchy and/or ill tempered...course this is a tough process to go through, the disease, the treatment, everything...
when I first started posting here, this forum was far more "to the point" shall we say, with a lot of insulting going on, that sort of stuff, it wasn't half as polite as it is now...but I stayed anyway (off and on) cause I just thought these people don't really know me, so I really don't "personalize" too much, someone could just be having a bad day that day, whatever,,,,unless someone really gets nasty, and that's rare now....I'm just here as a hep c patient like anybody else, and if I don't like one person's opinion, I'll just read on to what I do like...course we can take or leave what anybody has to say, if you find it helpful, or not...
sometimes when youre blogging, there is a "reference" all it might conern in a post, anybody that might be involved in the discussion, but that doesn't necessarily mean that I'm directly speaking to everyone listed in the name line...
One thing I will say though, there are people from all over who contribute on these forums, from all walks of life, with varying types of personalities...it's probably a good thing not to be too thin-skinned on any blog, because then it tends to be hard to stay there and pick up valuable info and support...there are also people who are on sometimes mind-altering drugs, etc, that tend to make them grouchy and/or ill tempered...course this is a tough process to go through, the disease, the treatment, everything...
when I first started posting here, this forum was far more "to the point" shall we say, with a lot of insulting going on, that sort of stuff, it wasn't half as polite as it is now...but I stayed anyway (off and on) cause I just thought these people don't really know me, so I really don't "personalize" too much, someone could just be having a bad day that day, whatever,,,,unless someone really gets nasty, and that's rare now....I'm just here as a hep c patient like anybody else, and if I don't like one person's opinion, I'll just read on to what I do like...course we can take or leave what anybody has to say, if you find it helpful, or not...
I have spent more of my life alone than with anyone, and prior to 2005 I traveld alone all the time. I have driven east to west (florida-Lake tahoe) two times. I also spent many years in colorado, new mexico, nevada and arizona. I love the mountains and sports related to it. I was born in florida so came back whn my Mom started her path to death and never left since I have one daughter and I wanted her to stay in the same school, she has one more year until college and really would be a great dive buddy if I could get my act together.
I love cruises as long as you take plenty of excursions, but in my heart I'd love to go to Marsh harbor and stay on a sailboat for a month or two. No tv, no phones just the sea and your spear gun. I want my daughter to experience that. Have you ever been to any of the Abico Ilses there are many that are worthwhile.
I go on tuesday to this new specialist so I'll ask for depression medication and also discuss treatment options. If he cannot answer questions and hold a conversation with me on the same level then I will be back at square one. I attribute many of the symptoms that have surfaced in my case to the years I have had the virus and the personal things that have been tagic. I do need to have an updated viral load, and I do not understand why my ct (I have not gotten my copies yet) according to the person who called me, showed my liver "normal" I swear I can feel this pain medial and to my front but transverse to my posterior midline, it is a dull every ending pain, it never goes away. and I do not understand why I cannot bend over these days, since treat attempt.
I have quite a few symptoms since my treatment that have not gone away?? I stopped in May of this year after starting in Feb of this year I completed 3 full months and went downhill, but I digress you know this.
So anyway yeah they have some funky critters in your world, I see them on the teli here. I'll look up that place your going and see if I can find some pictures.
Your a good egg and I tell you writing to you makes a difference thank you from that. I mean it in a passive way and hope it causes no offense.
It is offensive tome I am forced to see doctors I have no rapour with on the advice of my attorney to keep documenting my symptoms for SSDI. I have to play this legal game now to get back some of the monies I have paid in all my life up until 2005. Seems so unfair.
Lani
I love cruises as long as you take plenty of excursions, but in my heart I'd love to go to Marsh harbor and stay on a sailboat for a month or two. No tv, no phones just the sea and your spear gun. I want my daughter to experience that. Have you ever been to any of the Abico Ilses there are many that are worthwhile.
I go on tuesday to this new specialist so I'll ask for depression medication and also discuss treatment options. If he cannot answer questions and hold a conversation with me on the same level then I will be back at square one. I attribute many of the symptoms that have surfaced in my case to the years I have had the virus and the personal things that have been tagic. I do need to have an updated viral load, and I do not understand why my ct (I have not gotten my copies yet) according to the person who called me, showed my liver "normal" I swear I can feel this pain medial and to my front but transverse to my posterior midline, it is a dull every ending pain, it never goes away. and I do not understand why I cannot bend over these days, since treat attempt.
I have quite a few symptoms since my treatment that have not gone away?? I stopped in May of this year after starting in Feb of this year I completed 3 full months and went downhill, but I digress you know this.
So anyway yeah they have some funky critters in your world, I see them on the teli here. I'll look up that place your going and see if I can find some pictures.
Your a good egg and I tell you writing to you makes a difference thank you from that. I mean it in a passive way and hope it causes no offense.
It is offensive tome I am forced to see doctors I have no rapour with on the advice of my attorney to keep documenting my symptoms for SSDI. I have to play this legal game now to get back some of the monies I have paid in all my life up until 2005. Seems so unfair.
Lani
Well, I am looking forward to hearing about this trip! Maybe, take a journal with you?
Be careful and I hope you have a great time!
Y
Be careful and I hope you have a great time!
Y
Sorry about the confusion, initially i wasnt sure if you still drank but you cleared that up early on. Forsee didnt agree with my post on the amounts we can drink, which is OK. It wasnt directed at you.
Alcohol debate tend to get a bit heated around here, so dont take it the wrong way.
The point i was trying to make with the drugs is not to stop taking them but to see if you can replace them with ones that dont contain the Liver warnings. When all said and done its a trade off between being able to function and trying to prevent liver damage and or increased symptoms. In no way was it meant to be personal. I still think you should talk to your Doc about this.
Still havent got my head around why some of us experience severe symptoms with minimal Liver damage, yet others can have cirrhosis before they even realise they have HepC.
Gets your back up a bit when the virus starts messing with your QoL ay. Does me at least.
The snakes here are pretty intersesting too and most of em will get out of your way. Not all of em but. Theyre quite deadly too, so i'll try and stay out of their way.
It should be fun though, i am going to know what isolation is that for sure.
Hope you get to go on your cruise, can I come along - LOL.
Wish you Well
CS
Alcohol debate tend to get a bit heated around here, so dont take it the wrong way.
The point i was trying to make with the drugs is not to stop taking them but to see if you can replace them with ones that dont contain the Liver warnings. When all said and done its a trade off between being able to function and trying to prevent liver damage and or increased symptoms. In no way was it meant to be personal. I still think you should talk to your Doc about this.
Still havent got my head around why some of us experience severe symptoms with minimal Liver damage, yet others can have cirrhosis before they even realise they have HepC.
Gets your back up a bit when the virus starts messing with your QoL ay. Does me at least.
The snakes here are pretty intersesting too and most of em will get out of your way. Not all of em but. Theyre quite deadly too, so i'll try and stay out of their way.
It should be fun though, i am going to know what isolation is that for sure.
Hope you get to go on your cruise, can I come along - LOL.
Wish you Well
CS
I don't know why anyone on this BLOG thinks I drink, I have NOT had a drink with alcohol since I got the first set of blood work that indicted I have HCV, I AGREE NO ALCOHOL. I guess I have lost my ability to communicate or maybe I just do not get the concept of writing on a BLOG since I never have. I thought it was to "share" not critique. I was happy to have people rewspond, but this lady from out west seems to want to ....who the heck knows. If it's like a "root canal" go to another place. I was thankful, I have a hopefull perspective and see myself learning from others who were facing the same virus. I am sincerely sorry if I pissed anyone off. Forseegood I agree with your view regarding alcohol. I agree about the gent from down under he is smart. I have had the symptoms of sever fatigue since 2005, It started with this feeling of being out of control, not being able to cope, and then after about 6 months I started crying all the time, I was working at the time...in healthcare and I would have to go and hide, then I started thinking it was my divorce so the xanax would help it pass. It did not the symptoms progressive got worse until I stopped working a fantastic job, because I could not get past mid morning without feeling I was in need of a nap and going to have a meltdown. I have had these problems for many years I must admit, when the colitis came, when the shingles came, when I would get the hives all these event circled around people dying in my family so I chalked them up to sadness and always was able to bounce back. Since 2005 NOT BOUNCING anywhere. I have turned into a polar opposite of who I woked so hard to be. I freak out about things that are ridiculous and sleep way to much. So I need the meds to cope and to not get "committed" (lol) and then the meds hurt me (maybe) but the trade off must be. Iam sorry if I upset any of you. I sincerely want anyone who writes to understand how greatful I am for them taking the time...good or bad, I am thankful to hear your opinions and try to process them correctly. If I do not accept my apolgy in advance.
Watch the snakes mate. I was in the everglades hiking and camping a few years back and the crocks and coral snakes were something to come across. My mother worked for Ray Hoss he was a famous snake farmer. he milked cobras and many kind of snakes and he is brilliant. We have some snake here in florida that are pretty cool not aggressive for the most part, unless you surprise them. Be safe and have fun. I want to take a cruise this fall, and sit on the deck and just look at the sea. I like to dive in Marsh harbor in the abicos, but in the last 2 years have done nothing close. So glad your strong enough in body and mind to put everyday as a new one. I want to feel better for the love of God I really do. I do not know the person I am today.
Regards
Lani
Watch the snakes mate. I was in the everglades hiking and camping a few years back and the crocks and coral snakes were something to come across. My mother worked for Ray Hoss he was a famous snake farmer. he milked cobras and many kind of snakes and he is brilliant. We have some snake here in florida that are pretty cool not aggressive for the most part, unless you surprise them. Be safe and have fun. I want to take a cruise this fall, and sit on the deck and just look at the sea. I like to dive in Marsh harbor in the abicos, but in the last 2 years have done nothing close. So glad your strong enough in body and mind to put everyday as a new one. I want to feel better for the love of God I really do. I do not know the person I am today.
Regards
Lani
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