Aa
do sides come and go during tx?
morning all..up early and couldn't sleep even with the butterfly friend lol...inj 20 last nite and noticed sx's are rearing their ugly fangs again..does this happen alot during tx? i mean i feel like i am back on week 1 again, also the anemia i feel getting worse so wait until next blood workup to see if still dropping off..was 11. last time and i drink tons of mineral water..feel like a junkie scratching all time..starting to get tired of sx's and want to quit tx sometimes..hanging in..shelly
thanks for the letter, cried like a baby. i will send this out to what friends are still around. thanks so much
Suit of Armour??? WHY? Did I miss something...lol? Well depening on the total guest list, I may have to have 2 pool boys. Think you and can-do can handle it? Sounds as if he may be a lil weighted down and not able to move fast enough. We could always fry an egg on his suit of armour! Does he wear depends under that?
Yes, it is nice that fair turn is coming my way. Brother said he would come over anytime and cook. He really is a great cook and stuck in his ways as to how he works in the kitchen. Oh gosh, don't use his knife's wrong! Every knife has it's own pourpose! He cringes w/what I do to mine!
Kathy, I do not get my CBC back till this week. Just had it drawn on Friday. Perhaps when I have it faxed over, you can help me read it. I just asked for a HGB but he requested the CBC I guess due to the UTI. Never noticed and bladder pain and I suppose that is due to the pain meds I am on. Only figured it out when it started to burn, cloudy and smelly pee. TMI? (too much info). I had not taken any pain meds yesterday (hoping to go potty) and noticed the bladder pain. So guess it was worse than I thought it was.
Today I am not so well. Had to break down and take a vicoprophen for pain, phenegren for very upset tummy and a Ativan for the muscle twitching. Now thats some weird stuff when extremities start jumping all over the place. My legs and feet were doing a jig in bed! Have you ever had the muscle twitching? Sure will be glad to be off all the meds for sides along w/tx meds. Will the twitching stop?
Off back to the bed and wait for the meds to kick in, perhaps I will feel better by the time Rogers Sunday pot roast is ready for dinner. He cooks it slow in the oven all day then makes homemade mashed taters w/cream cheese in them. SOOOOO GOOOOOD! No wonder I have gained weight on tx, my guys can really cook! Me too when I feel up to it!
Have a wonderful Sunday....
Fisheress
Where is Rockerfor life, miss his poem today. Oh and hello to all, hope all are doing well today
Yes, it is nice that fair turn is coming my way. Brother said he would come over anytime and cook. He really is a great cook and stuck in his ways as to how he works in the kitchen. Oh gosh, don't use his knife's wrong! Every knife has it's own pourpose! He cringes w/what I do to mine!
Kathy, I do not get my CBC back till this week. Just had it drawn on Friday. Perhaps when I have it faxed over, you can help me read it. I just asked for a HGB but he requested the CBC I guess due to the UTI. Never noticed and bladder pain and I suppose that is due to the pain meds I am on. Only figured it out when it started to burn, cloudy and smelly pee. TMI? (too much info). I had not taken any pain meds yesterday (hoping to go potty) and noticed the bladder pain. So guess it was worse than I thought it was.
Today I am not so well. Had to break down and take a vicoprophen for pain, phenegren for very upset tummy and a Ativan for the muscle twitching. Now thats some weird stuff when extremities start jumping all over the place. My legs and feet were doing a jig in bed! Have you ever had the muscle twitching? Sure will be glad to be off all the meds for sides along w/tx meds. Will the twitching stop?
Off back to the bed and wait for the meds to kick in, perhaps I will feel better by the time Rogers Sunday pot roast is ready for dinner. He cooks it slow in the oven all day then makes homemade mashed taters w/cream cheese in them. SOOOOO GOOOOOD! No wonder I have gained weight on tx, my guys can really cook! Me too when I feel up to it!
Have a wonderful Sunday....
Fisheress
Where is Rockerfor life, miss his poem today. Oh and hello to all, hope all are doing well today
Forgot to answer you about Brother. YES! He is off all his meds. Went cold turkey and is not drinking either as far as I know. Doing wonderful! I could not be more proud. He walks to the apt office where they have a gym, does his workout then out to the pool and does his water exercises for a hour or two. He is really tanned now, starting to lose weight and actually feeling pretty good about himself. He is coming over for Sunday dinner today but I think as much meds I have in me I will most likely be asleep so he will proberly work on his car.
Thanks for asking.....
Later,
Colette
Thanks for asking.....
Later,
Colette
wow - total turn around for your brother. Is he off the pain meds?????? I just don't understand why some of us get kicked so very hard. Hey --- what was your ANC when they did the CBC? After reading Fishdocs post the other day I was also convinced I had a UTI. Since my ANC was only .4 for GI have me an rx for an antibiotic too. Funny tho - I think my UTI was psychosomatic.
i was so glad to read yr post...things Are getting better...Bro makin YOU dinner??!!!! Yeah,you got him moving&grooving!!! about time goodworks come your way..nice to reap what you have sown...about that poolboy position that can-do-man is applying for?? if he shows up in full body armor-Do not allow him in the deepend! you must be firm w/ him...oh he will squirm,stomp and carry on something awful,but keep him in the kiddy pool
Hi girl, how we holding up? And hows sis doing on tx and brother with his new hips? I know what you mean about the 'I will be there'. One thing though is a TRUE friend will be there. Some have good intentions but life is such a fast pace anymore. But some just say it then ignore ya. HGB is going up so your pool boy is ready and willing.:) Are you done now or real close?
wow, what an excellent letter. I'll have to print thaat one and share with friends when I feel like C**p and need a break.
Have a great wekend all
Have a great wekend all
one of the things i noticed is that tx blocked my from the presense of GOD. i did not have one spiritual thought the whole time.
the phone would ring and i would feel "i hope that is not for me".
bobby
the phone would ring and i would feel "i hope that is not for me".
bobby
Here is a copy of the letter referred to above.
"Letter to People Without Hepatitis C"
Note: This letter is one of the best found written for people without Hepatitis C. Please feel free to print this letter and give it to those that need to understand.
Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.
Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.
Authored by Bek Oberin
"Letter to People Without Hepatitis C"
Note: This letter is one of the best found written for people without Hepatitis C. Please feel free to print this letter and give it to those that need to understand.
Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.
Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.
Authored by Bek Oberin
I have to agree to that bobby. It puts me to distance with everything, but I just have to remember, it only temporarily. He will wait. Ill be myself again. It
Great letter, I found it once before and I beleive it was here on this forum. I sent it to my friends with hopes of keeping contact w/the outside world. Only 2 friends have been there for me and one of them was my sweetie. I found even though they say they understand after you tell them your news or they read this letter, it's funny how they just slip away....... Get a joke or something every once in a while....woopie!
Perhaps after tx in one week, I should send this letter out again to my friends whom said they would be here for me, perhaps they will remember what they read and said.....
HERE I GO AGAIN, TURN THE PAGE........
Fisheress
Perhaps after tx in one week, I should send this letter out again to my friends whom said they would be here for me, perhaps they will remember what they read and said.....
HERE I GO AGAIN, TURN THE PAGE........
Fisheress
Hey! Good to hear from ya! Glad the old reds are coming back up and ya feeling alive again! Sorry if I sounded as if I was feeling sorry for myself in above post. Great letter but I guess after reading it again, it struck a nerve.
I am fixing to go do my shot right now (waiting on it to warm a lil) and then I will only have 1 MORE SHOT TO GO NEXT SAT! Will continue my Riba until the 10th and go for my end of tx PCR on the 11th.........then ALL DONE! I tell ya, it's been a ROUGH MONTH! The bone and muscle pain is unbearable. I always thought I had pain before? NOOOOOOO......it's killer Diller 24/7. Living on Vicoprophen and can't POOH! Hopefully I will give birth to this lil shi* soon because my clothes are not fitting around my waist or I am gonna have to go to the maternity dept. at wallymart soon! Had to go to reg doc Thurs. for UTI on top of everything else. So now added antibotic to the mix.....never ends! Went ahead and had him do a CBC while I was there because I have been running my HGB at 10.4, want to keep an eye on it to see if it changes any. Wonder how long after tx it will take to come back up to 15 where I started???
Sissy had her 12 week PCR test on Monday, no results yet. Thursday she did #13/24 so she is over 1/2 there. She gets the joint pain in the butt....literally. Other than that she seems to be holding her own, driving, walking the dog and eating good. Keeping fingers crossed she is Neg,
Brother is doing GREAT! He is about this close : ) to being completly on his own. WOOHOO! THink I am more excited about that than the end of tx! Theonly thing holding him back is the dang SS office that won't replace his lost checks that got blown away in Katricna. That will finish fixing up the car that I had donated by a friend (tags, inspection, insurance, oil change, tune up and ac), then got to get his Texas license. Tuesdy was my worst day EVER! I called him to come over and cook dinner. No prob, he made us a wonderful dinner.
So all & all suppose everything is as good as it can be just need to get out of this funk. Looking forward to feeling better so I can plan the pool party. Looking forward to you being here!
Chat at ya later, gotta go do the deed.
oxoxoxox
Fisheress
I am fixing to go do my shot right now (waiting on it to warm a lil) and then I will only have 1 MORE SHOT TO GO NEXT SAT! Will continue my Riba until the 10th and go for my end of tx PCR on the 11th.........then ALL DONE! I tell ya, it's been a ROUGH MONTH! The bone and muscle pain is unbearable. I always thought I had pain before? NOOOOOOO......it's killer Diller 24/7. Living on Vicoprophen and can't POOH! Hopefully I will give birth to this lil shi* soon because my clothes are not fitting around my waist or I am gonna have to go to the maternity dept. at wallymart soon! Had to go to reg doc Thurs. for UTI on top of everything else. So now added antibotic to the mix.....never ends! Went ahead and had him do a CBC while I was there because I have been running my HGB at 10.4, want to keep an eye on it to see if it changes any. Wonder how long after tx it will take to come back up to 15 where I started???
Sissy had her 12 week PCR test on Monday, no results yet. Thursday she did #13/24 so she is over 1/2 there. She gets the joint pain in the butt....literally. Other than that she seems to be holding her own, driving, walking the dog and eating good. Keeping fingers crossed she is Neg,
Brother is doing GREAT! He is about this close : ) to being completly on his own. WOOHOO! THink I am more excited about that than the end of tx! Theonly thing holding him back is the dang SS office that won't replace his lost checks that got blown away in Katricna. That will finish fixing up the car that I had donated by a friend (tags, inspection, insurance, oil change, tune up and ac), then got to get his Texas license. Tuesdy was my worst day EVER! I called him to come over and cook dinner. No prob, he made us a wonderful dinner.
So all & all suppose everything is as good as it can be just need to get out of this funk. Looking forward to feeling better so I can plan the pool party. Looking forward to you being here!
Chat at ya later, gotta go do the deed.
oxoxoxox
Fisheress
I don't know any answers to your question but can give you some support. Hang in there girl..... everyshot you are closer to completing the tx.
With me there is no fixed pattern with the sx's. Pretty good 1 day , feel really bad the next. I did shot 22 last nite and my hmg is 9.5 as of the lab results fri. I'm goin on procrit the 1st time shortly after 22 weeks of tx. Today the anemia is kickin my a--. Hang in there shelly!
Yes, that is why there is this letter I have referred to
in the past that I got from here, wish I knew how to find it
but anyway , it helps with family members, since the sx do
come and go, good days bad days, with no consistency.
just when you've got it...forget it!
good luck, stay in touch
in the past that I got from here, wish I knew how to find it
but anyway , it helps with family members, since the sx do
come and go, good days bad days, with no consistency.
just when you've got it...forget it!
good luck, stay in touch
Tx is a roller coaster ride!! Sx's come and go, and all you can do is just grit your teeth and wait for the ride to come to a stop. Hope sx's ease up on ya soon.
I know what you mean, I am starting week21 tomorrow sx seem to come and go come and go just when I think I am one of the lucky ones I next feel like I want to fold my cards and climb into bed for ever. As for itching I went from ribba rash to posin ivy which I am suffering through as I write this. Oh well, in my case it is the price a pay for a miss spent youth.
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