Aa
Checking in and missing you all!
Hi from your long lost hep buddy!
Sorry, I haven't checked in lately, lots going on. As soon as I started feeling better after ending tx, I began working by butt off. All the stuff that was left undone from the past year. Taxes, selling sports tix, bills, requesting money from workers comp. etc. At times I was working 10-12 hours a day. It was great to feel like doing this, as no way I could do this before. I think I probalby did too much as I was sleeping the next day 20 hours a day...then my joints and muscles began hurting, so much I couldn't type. I have an appt. for a rhematologist on Tues. as I think this could be chronic fatigue syntrom. Anyone have this or know what is infoved? I looked up on the internet and from my recent problems it seems it could have popped up from these drugs and illnesses. The pain has been so bad at times I can't even look at the posts. But I think of you all the time.
My fingers are feeling good today and I miss you all so much. Wanted you to know I have NOT forgotten about you at all. Those post tx problems may be hitting me. I haven't had a recent PCR, so I don't know if the hep has returned. I even had to cancel my massage today. Now you know that's bad!
Love you all and hope my fingers can continue to feel well enough to write more... I will check in. My doc did give me some good pain meds.
Linda
Sorry, I haven't checked in lately, lots going on. As soon as I started feeling better after ending tx, I began working by butt off. All the stuff that was left undone from the past year. Taxes, selling sports tix, bills, requesting money from workers comp. etc. At times I was working 10-12 hours a day. It was great to feel like doing this, as no way I could do this before. I think I probalby did too much as I was sleeping the next day 20 hours a day...then my joints and muscles began hurting, so much I couldn't type. I have an appt. for a rhematologist on Tues. as I think this could be chronic fatigue syntrom. Anyone have this or know what is infoved? I looked up on the internet and from my recent problems it seems it could have popped up from these drugs and illnesses. The pain has been so bad at times I can't even look at the posts. But I think of you all the time.
My fingers are feeling good today and I miss you all so much. Wanted you to know I have NOT forgotten about you at all. Those post tx problems may be hitting me. I haven't had a recent PCR, so I don't know if the hep has returned. I even had to cancel my massage today. Now you know that's bad!
Love you all and hope my fingers can continue to feel well enough to write more... I will check in. My doc did give me some good pain meds.
Linda
Myown; I read up some on CFS and realized that some could have come from all the drugs, hep C, new autoimunine disease etc. I have had what seemed like CFS during that hospital stay when dx and afterwards. What I read is it takes 3 mos. to really dx it. It is hard to tell. Miss said her joint pain etc, seemed to go away post tx. Thanks for the site. I have lost all my buddies addresses and phone numbers. Could you send you yours again? My address book is going nutz, perhaps since I have several computers. Thanks for your info, I would love to find some healthy supplements that I can write down and get from the healhfood stores....
I just woke up again. I slept from 5 PM to 10;30 the next day...a sign of CFS. I had spent about 5 hours on the phone arranging all the deliveries of clothes, art, furniture etc. and then went out like a light!
ALL; I miss you guys so much! I will work on catching up. If anyone has some stuff that is new, I would love if you could post it for me, I am concerned about all I have missed with you all!
Miss: You caught me! I cheated and checked the display thread. Normally I don't do this, but I have been gone and wanted to say hi to everyone personally. Thanks for your wonderful calls and concerns. I love hearing from you. Most of my old friends I don't talk to much as I am either to busy or hurting and sleeping too much! Yep, it's great that Brian isn't visiting much anymore, but I'm not that good! LOL
Rosebud; You are right, I haven't read many threads yet. I would love to hear more about the candidias and any info on the fatigue. I was on several IV antibiotics for the whole 3 weeks. I know that even with my 7 docs they had a hard time figuring out what was going on with me. Maybe we should start a thread on Supplements again. If you have my email, I would like to hear about the info you have, or we can put it on the forum. Thanks!
I just woke up again. I slept from 5 PM to 10;30 the next day...a sign of CFS. I had spent about 5 hours on the phone arranging all the deliveries of clothes, art, furniture etc. and then went out like a light!
ALL; I miss you guys so much! I will work on catching up. If anyone has some stuff that is new, I would love if you could post it for me, I am concerned about all I have missed with you all!
Miss: You caught me! I cheated and checked the display thread. Normally I don't do this, but I have been gone and wanted to say hi to everyone personally. Thanks for your wonderful calls and concerns. I love hearing from you. Most of my old friends I don't talk to much as I am either to busy or hurting and sleeping too much! Yep, it's great that Brian isn't visiting much anymore, but I'm not that good! LOL
Rosebud; You are right, I haven't read many threads yet. I would love to hear more about the candidias and any info on the fatigue. I was on several IV antibiotics for the whole 3 weeks. I know that even with my 7 docs they had a hard time figuring out what was going on with me. Maybe we should start a thread on Supplements again. If you have my email, I would like to hear about the info you have, or we can put it on the forum. Thanks!
hope this post finds you feeling better than before, i realize that you might not be reading all posts. i want to offer a suggestion i have been posting all over the place.
i know there is no comparison to what i went through vs. you. but o want to offer my thoughts on the after pain, fatigue and other symptoms we get. please if you haven't read my post on hepititus side on "candidas" as we were/or are on chemotherapy we are more susceptible to candidas (yeast overgrowth) also you like me might have taken antibiotics while you were hospitalized, this might have put you at even more increased risk for this condition. read my post and get more info on what i have only briefly explained here. but this is a quick and easy fix with the taking of lactobacillis acidophilis tablets which is a natural way to realign the bodies natural intestinal flora. and besides only costs about 10. for these natural tablets and several days to see the benefit.
good luck as you continue your recovery.
rose
i know there is no comparison to what i went through vs. you. but o want to offer my thoughts on the after pain, fatigue and other symptoms we get. please if you haven't read my post on hepititus side on "candidas" as we were/or are on chemotherapy we are more susceptible to candidas (yeast overgrowth) also you like me might have taken antibiotics while you were hospitalized, this might have put you at even more increased risk for this condition. read my post and get more info on what i have only briefly explained here. but this is a quick and easy fix with the taking of lactobacillis acidophilis tablets which is a natural way to realign the bodies natural intestinal flora. and besides only costs about 10. for these natural tablets and several days to see the benefit.
good luck as you continue your recovery.
rose
Oh my, you are scaring me. You remembered all those names to respond to! (And then she noticed a link above to open the thread to cheat, lol) So very glad to see you back online.
You have been missed.
miss
You have been missed.
miss
Hey Linda!
Glad to hear you are feeling better than what you have been. You've been thru the mill and I'm very happy to hear that you are out of the woods.
It seems that CFS can come on from a weakened immune system. Many of the symptoms of Hep c are similiar and who knows, but I believe, many with hep c probably have or had CFS. I know that when I was trying to find out why I wasn't feeling quite myself (just prior to hep dx) I was going to a holistic doc (not the holistic doc I see now) and she did a zillion tests and said "Oh I see you had CFS at one time." I guess cause she said "had" I didn't even ask her "what test did she do that was indicative of CFS."
But anyhow I told her I had gotten sick at one time when I was around 18 and it was probably that. I pushed for the Hep C test after reading on internet some symptoms and thats when I discovered I had hep. But my point is I believe alot of us with hep do have or at least had CFS. Now whether the hep comes first, then the CFS, I don't know, but I would guess the hep comes first. Some of these post sx, I believe, is from our body being pushed into CFS and IMO the solution is to support the immune system thru supplements, stress reduction etc. Some doctors may want to take the 'drug route' right off the bat, but I would try the alternative route first (if I were you.) HR could probably give you alot of helpful info in the area of 'immune support."
Most people with CFS are frustrated because the syndrome is not taken seriously by everyone in the medical field, as a matter of fact, I think (?) I remember reading that they are looking to change the name of CFS to something else.
I hope you get answers from your doctor, but an immune support vitamin regimen I believe is crucial.
Here's a site on CFS http://www.immunesupport.com/
I just did shot 17. Yahoo! Seeing light at the end of the tunnel. I was going to quit at week 20, but it wouldn't be me if I didn't change my mind 50 times before I execute a plan, so I am going the full 24 or at least that's how I feel at THIS moment in time,,,but I think I'm pretty sure.
Just found out I'm a "tad anemic," as my NP worded it 10.9. Feel fine tho. I'm not going on procrit. I would reduce riba if I had too. I'm a little breathy if I walk too far, but I still am as energetic as usual, so I don't feel the need for any helper drugs neither does the NP.
Take care Linda.
Hope all goes well with your doctor appointment.
Glad to hear you are feeling better than what you have been. You've been thru the mill and I'm very happy to hear that you are out of the woods.
It seems that CFS can come on from a weakened immune system. Many of the symptoms of Hep c are similiar and who knows, but I believe, many with hep c probably have or had CFS. I know that when I was trying to find out why I wasn't feeling quite myself (just prior to hep dx) I was going to a holistic doc (not the holistic doc I see now) and she did a zillion tests and said "Oh I see you had CFS at one time." I guess cause she said "had" I didn't even ask her "what test did she do that was indicative of CFS."
But anyhow I told her I had gotten sick at one time when I was around 18 and it was probably that. I pushed for the Hep C test after reading on internet some symptoms and thats when I discovered I had hep. But my point is I believe alot of us with hep do have or at least had CFS. Now whether the hep comes first, then the CFS, I don't know, but I would guess the hep comes first. Some of these post sx, I believe, is from our body being pushed into CFS and IMO the solution is to support the immune system thru supplements, stress reduction etc. Some doctors may want to take the 'drug route' right off the bat, but I would try the alternative route first (if I were you.) HR could probably give you alot of helpful info in the area of 'immune support."
Most people with CFS are frustrated because the syndrome is not taken seriously by everyone in the medical field, as a matter of fact, I think (?) I remember reading that they are looking to change the name of CFS to something else.
I hope you get answers from your doctor, but an immune support vitamin regimen I believe is crucial.
Here's a site on CFS http://www.immunesupport.com/
I just did shot 17. Yahoo! Seeing light at the end of the tunnel. I was going to quit at week 20, but it wouldn't be me if I didn't change my mind 50 times before I execute a plan, so I am going the full 24 or at least that's how I feel at THIS moment in time,,,but I think I'm pretty sure.
Just found out I'm a "tad anemic," as my NP worded it 10.9. Feel fine tho. I'm not going on procrit. I would reduce riba if I had too. I'm a little breathy if I walk too far, but I still am as energetic as usual, so I don't feel the need for any helper drugs neither does the NP.
Take care Linda.
Hope all goes well with your doctor appointment.
Thanks for asking about me. I haven't had time or energy to read all the past posts. I will try to catch up soon. My energy is better but sleeping 15 hours a night and sometimes 5 hour naps a day takes lots of my time! I have never slept so much in my life. Some days I can even take my little stepdaughter shopping for clothes and shop for several hours, before 10 minutes was about it. I woke up just now and am still tired. Hoping this all goes away when these poisons leave my system, as I hear it takes awhile. I'm off to get that massage today and check on the house. That has been a lot of work. Almost like getting a new house, nice, but the timing isn't so hot. Glad to be back too! my fingers and joints are feeling so bad the past two days, so I am planning on posting more and catching up and seeing what is going on with all of you. I too have been wondering about what's going on with you all.
Linda
Linda
glad to hear you are back with us! i haven't been online much these days, but heard about your hospital stay. glad that situation improved. hope things get better and better for you! don't work too hard!
it was me that asked about you. i don't really seem to know you directly but i read so many posts, that after you had your crisis and were gone then here then gone again, i was concerned.
glad to hear you are so active,
take care
rose
glad to hear you are so active,
take care
rose
Wyntre; Thanks for the thoughts. The Lupus anticoaguant has been pretty awful. I have incredible bruises and cuts that bleed for hours, but no pain at least! My do says this isn't good since I will be on this the rest of my life. I guess I need to stop being such a kluctch! I have always been this way!
Grandma: So glad you are so far into tx. It's great to meet people from the board. Hope we can meet one day! Still havent moved back into the house, one of the horriic jobs I have been doing. Moving all that little stuff will be the worst. If you get a chance come and see me. Should be home in a week or two. Maybe you can put in the 15 minutes of help a few have offer LOL.
Mike; You are so wonderful. Thanks for you thinking of me. I hope to me on more and we can talk more. I enjoy your thoughts and insightful input and especialy your concern for me.
Pdilly; I have missed you too. Thanks for your thoughts. I miss my friends and really haven't had many this year except you guys.
Bug! I am so happy to hear from you. I have been wondering whats going on with you and tx etc. Let's talk on the phone some day so I don't have to worry about aching fingers. I have really missed you and am really wanting to talk and banter again.
Jim; Nice to hear from you. You are the best! I know I was so excited at first I did way too much stuff. Hard not to with so much to catch up on. Sure this is not another tx sx CFS. Hope to talk to you more.
dperry; So sorry to hear your blood counts are still so low!! I'm happy it went to 9.2, but that is still so low. You are half way home, right? You will feel so much better when it's done. I was so estatic when my energy an counts went up. I most likely did way to much, but I it will be over sooner than it seems.
Painterlady; Thanks for thinking of me. I have been thinking of all of you! I would love to hear any info on the CFS from your fried in Sac. Hopefully we can talk more soon.
Fishdoc; Hey lady! Is it good to be off the tx yet? I felt it for awhile, but then started sleeping like crazy. I would take any eyelashes! I had my hair cut, first time in 6 months. I looked like the keaton in Beetle Juice, stil falling out though, but she cut all the frizz off. Aren't those joints the worst? I sure hope it goes away and not last, or be CFS. I LOVE frogs! Would they bite me if I had some in my pond? I have seen some in Costa Rica, but not in the states. So glad to hear from you. Isn't it great to be off tx? Missmiss says her joints hurt for several months and then went away....hope that happens for us.
OH; MIss you. Somehow lost all my addresses from my buddies....still trying to find them. Email me! I would love to hear how you are doing and set up at time to hook up with the ducks.
Mkeela; Hey sweetie! Good to hear from you. I would love to catch up and hear what is going on with you (and everyone() How are you doing? How's tx doing, are you done?
Love to all, you are the best friends I could ever have during this time. I certainly dont' want to stop being in touch. I know why Jim stays around! How is NYgirl?
Grandma: So glad you are so far into tx. It's great to meet people from the board. Hope we can meet one day! Still havent moved back into the house, one of the horriic jobs I have been doing. Moving all that little stuff will be the worst. If you get a chance come and see me. Should be home in a week or two. Maybe you can put in the 15 minutes of help a few have offer LOL.
Mike; You are so wonderful. Thanks for you thinking of me. I hope to me on more and we can talk more. I enjoy your thoughts and insightful input and especialy your concern for me.
Pdilly; I have missed you too. Thanks for your thoughts. I miss my friends and really haven't had many this year except you guys.
Bug! I am so happy to hear from you. I have been wondering whats going on with you and tx etc. Let's talk on the phone some day so I don't have to worry about aching fingers. I have really missed you and am really wanting to talk and banter again.
Jim; Nice to hear from you. You are the best! I know I was so excited at first I did way too much stuff. Hard not to with so much to catch up on. Sure this is not another tx sx CFS. Hope to talk to you more.
dperry; So sorry to hear your blood counts are still so low!! I'm happy it went to 9.2, but that is still so low. You are half way home, right? You will feel so much better when it's done. I was so estatic when my energy an counts went up. I most likely did way to much, but I it will be over sooner than it seems.
Painterlady; Thanks for thinking of me. I have been thinking of all of you! I would love to hear any info on the CFS from your fried in Sac. Hopefully we can talk more soon.
Fishdoc; Hey lady! Is it good to be off the tx yet? I felt it for awhile, but then started sleeping like crazy. I would take any eyelashes! I had my hair cut, first time in 6 months. I looked like the keaton in Beetle Juice, stil falling out though, but she cut all the frizz off. Aren't those joints the worst? I sure hope it goes away and not last, or be CFS. I LOVE frogs! Would they bite me if I had some in my pond? I have seen some in Costa Rica, but not in the states. So glad to hear from you. Isn't it great to be off tx? Missmiss says her joints hurt for several months and then went away....hope that happens for us.
OH; MIss you. Somehow lost all my addresses from my buddies....still trying to find them. Email me! I would love to hear how you are doing and set up at time to hook up with the ducks.
Mkeela; Hey sweetie! Good to hear from you. I would love to catch up and hear what is going on with you (and everyone() How are you doing? How's tx doing, are you done?
Love to all, you are the best friends I could ever have during this time. I certainly dont' want to stop being in touch. I know why Jim stays around! How is NYgirl?
Hi !!!! What a great surprise, finding your post here. I too, wondered how you were faring. Even if you don't or can't write, you know there are many of us here, thinking of you. Enjoy the sunshine :) OH
Hey there!! My last shot was March 29th, last riba the 31st. I have been doing exactly what you describe, except I'm not sleeping??? I have always slept like the dead (no pun intended), normally 10 hours a night, on tx more like 12. Now its 5 or 6. A couple of possibilities, my thyroid whacked out on tx, so now it may be coming alive. Its seems like I am having a flood of hormones, my boobs hurt, my eyelashes have gotten so long (??) they hit my glasses, course and straight, my eyebrows the same- I look like an owl...but, my joints are giving me fits, my knees, my wrist wakes me up....I am going to give it two months before I really worry about it, except the thyroid thing...my blood pressure on tx got so low (hospital visit it was 66/22) that I cut my accupril in 1/2, now its going up fast, so I'm back on a full dose.....but after 60 weeks........I feel like a million bucks compared to those last 12 weeks..........
my spring hormonal baby fits this year: poison dart frogs.......(I'll post a pic on tiredofmh site)..I still have 48 chickens from last years I need a baby fix......hubby asked if I had learned my lesson, and I laughed...( I do that a lot now!!!!!) and told him I was 51, did he really think I was going to learn....wanna see a cool site...Brians Tropicals- look at his basement..
For those of you still struggling-its a light, not a train!!!!!!
WARM FUZZIES ALL AROUND
my spring hormonal baby fits this year: poison dart frogs.......(I'll post a pic on tiredofmh site)..I still have 48 chickens from last years I need a baby fix......hubby asked if I had learned my lesson, and I laughed...( I do that a lot now!!!!!) and told him I was 51, did he really think I was going to learn....wanna see a cool site...Brians Tropicals- look at his basement..
For those of you still struggling-its a light, not a train!!!!!!
WARM FUZZIES ALL AROUND
Hey, hey, hey!!!! Sooooo glad to see you posted!!! I just popped in myself yesterday for the first time in forever...LOL. I can't believe what is going on with you! How horrible!!!! I don't know what to say except keep hounding the Dr.s until they FIX you!!!!! God Bless your heart. You'll be in my prayers. Miss reading your posts by the way, along with everyone elses. Keep on keepin on. Blessings to ya!!! -Mequila
Glad to hear from you.. Have been thinking about you and wondering how you were doing. I am still hanging on by a thread. Doc wants to do a transfusion, but Hemo tripled my Procrit for the week, and up to 40,000 now per week. Instead of the 20 had been giving me .. but so far 60.000 for the week. So hopefully by my next CBC next Monday that will show some improvement. It was 8.2 ( hgb) last week and up to 9.1 this week, so we will see.. Its been a rollicoster for me lately.
Its the transfusion I am concerned about, considering thats how I got HepC to begin with.
Glad to see you back and hope you start to feel better soon.. I am sorry to hear about the pain.
Its the transfusion I am concerned about, considering thats how I got HepC to begin with.
Glad to see you back and hope you start to feel better soon.. I am sorry to hear about the pain.
Baygirl I am so glad you posted I haven't seen anything from ya and was kinda begining to worry. Sounds like you have been one very busy woman. Good luck at the rheumatologist's. Sound like you may have CFS, but I hope not. I had a friend back home in sac that had it and she was very limited to what she could do for any length of time Maybe it will just take some time to build back your strength from you being so sick for so long. Good luck glad to see ya
Nicki
Nicki
So good to hear from you and hopefully the worst is well behind. Take care and try not to do too much, too soon. It takes awhile for the drugs to leave your system, not to mention for the mind and soul to heal.
Be well,
-- Jim
Be well,
-- Jim
I almost cried when I saw your post! I had been thinking that now that you felt a little better, and with all the stuff you had to take care of, we would just have to get along w/o for awhile. It's been rough!
Sorry to hear you're having new problems, I hope a rheumatologist can help.
It may take you some time to get over all the problems you had on tx, I'm sure you have a lot of rest to catch up on still, from being in ICU. Hang in there, you know you're loved here, I'm sure MissMiss told you we all missed you.
Keep in touch as you can,
Hugs,
Bug
Sorry to hear you're having new problems, I hope a rheumatologist can help.
It may take you some time to get over all the problems you had on tx, I'm sure you have a lot of rest to catch up on still, from being in ICU. Hang in there, you know you're loved here, I'm sure MissMiss told you we all missed you.
Keep in touch as you can,
Hugs,
Bug
I'm old. I will be 65 next month. I already have my Medicare card. No more copays at the doctor - YIPPEE! I have part A and B and my insurance co. is going to send me $36. a month rebate because I have part B. I only have to work 22 more days. If you only have 2 years left, you are almost there. It will go fast.
It is so nice to see you here and to know that you're passed the crisis stage. I was worried about you and it's a relief to read that you've been feeling well enough to do too much. Maybe you might take it a little easier for a while and see if the joint issues don't settle down some. That's the type of advise that's so easy to give and almost impossible to take. Anyway, welcome back and good luck. Mike
SfBayG - So glad hearing that you are feeling better. We all have been wondering what was going on...at least it is good news.. You have been through so much lately. Hang in there and keep us posted.
GrandmaA...retire...boy are you lucky. I have to make myself work these days. To much going on and I don't care anymore but unfortunatly I have about two more years before I can. I know you will enjoy yourself. You are so lucky.
GrandmaA...retire...boy are you lucky. I have to make myself work these days. To much going on and I don't care anymore but unfortunatly I have about two more years before I can. I know you will enjoy yourself. You are so lucky.
So glad to hear from you and to hear you are feeling better. That's great!
Someone recently was asking about you (I think it was last week). Was it rosebud or bug? I forget. My memory is shot.
I start week 31 tomorrow out of 51. Only 20 more to go! I retire in 22 days! YIPPEE!
Thanks for all your help before. I met another person from the forum today. We had lunch together when she was here before taking a flight home. So glad we could finally meet and put a face on a voice.
What happened to your book collection? Did you get them all back and in order? How are the kitties? They must have missed you SO much.
Someone recently was asking about you (I think it was last week). Was it rosebud or bug? I forget. My memory is shot.
I start week 31 tomorrow out of 51. Only 20 more to go! I retire in 22 days! YIPPEE!
Thanks for all your help before. I met another person from the forum today. We had lunch together when she was here before taking a flight home. So glad we could finally meet and put a face on a voice.
What happened to your book collection? Did you get them all back and in order? How are the kitties? They must have missed you SO much.
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