Aa
Working while on tx
I'm wondering how it is for those that keep/kept working while on tx. Wondering if your employer or co-workers knew and if you're managing to hide it if you didn't tell anyone. I'm working through the scenarios while awaiting bx results, making use of the time to decide which way I'll go depending, but I hope to keep working. I guess that's a very individual thing depending on each person's circumstances. Did anyone do this without their employer knowing anything at all or am I being incredibly over-optimistic?
I worked --- about 3/4 of the time. But I tried to make it every day.
There were days when my hind end wasn't gonna go anywhere. Not even to the kitchen. (Which - if anyone knows me --- that is AMAZING... I loooooooove food... The smells - the textures - the tastes.)
But I did what I could.
I am a big advocate of telling EVERYONE everything.
I don't have ANY reason to be ashamed of HCV. I didn't ask for it --- I didn't invite it in... I didn't say - Hey baby - come on over for a quick snack on my liver.
So I refuse to let the world tell me I'm an awful, evil person for having this disease - or having cured from it.. (or whatever they call SVR... LOL!)
I refuse to feel like something "dirty" or "nasty".
I wouldn't make a person who had breast cancer feel that way - so I won't feel that way.
Anyhow - each person has to decide what they intend to do.
But if you can handle it --- PLEASE - Be open about it ---- if you can.
Be prepared for any reaction - and have the ANSWERS before you tell anyone - that way you can say the answers... But know that no matter what your mindset is - some folks will have a medieval mindset and they literally will slide far away from you - as if looking at them could make them catch it.
Those folks ya just have to ignore - or put down to ignorance.
Hold your head high --- do what you can - and hope for the best.
Some folks can make it all the way through without one single side effect.
Some are devastated. Only time will tell which one you will be.
But if you plan ahead - Get your FMLA -- Insurance - Boss awareness, etc. You will be more prepared.
Much good luck to ya!
meki
There were days when my hind end wasn't gonna go anywhere. Not even to the kitchen. (Which - if anyone knows me --- that is AMAZING... I loooooooove food... The smells - the textures - the tastes.)
But I did what I could.
I am a big advocate of telling EVERYONE everything.
I don't have ANY reason to be ashamed of HCV. I didn't ask for it --- I didn't invite it in... I didn't say - Hey baby - come on over for a quick snack on my liver.
So I refuse to let the world tell me I'm an awful, evil person for having this disease - or having cured from it.. (or whatever they call SVR... LOL!)
I refuse to feel like something "dirty" or "nasty".
I wouldn't make a person who had breast cancer feel that way - so I won't feel that way.
Anyhow - each person has to decide what they intend to do.
But if you can handle it --- PLEASE - Be open about it ---- if you can.
Be prepared for any reaction - and have the ANSWERS before you tell anyone - that way you can say the answers... But know that no matter what your mindset is - some folks will have a medieval mindset and they literally will slide far away from you - as if looking at them could make them catch it.
Those folks ya just have to ignore - or put down to ignorance.
Hold your head high --- do what you can - and hope for the best.
Some folks can make it all the way through without one single side effect.
Some are devastated. Only time will tell which one you will be.
But if you plan ahead - Get your FMLA -- Insurance - Boss awareness, etc. You will be more prepared.
Much good luck to ya!
meki
You go girl!
I so admire your spirit, I myself, am at the same place you are. I have a feeling my results will not be as good as yours thou. So......I going to be one of them that pick up each foot and place it on the floor, but I have a feeling nothing I have ever encountered will be as this is.
Good luck.
Sandy
I so admire your spirit, I myself, am at the same place you are. I have a feeling my results will not be as good as yours thou. So......I going to be one of them that pick up each foot and place it on the floor, but I have a feeling nothing I have ever encountered will be as this is.
Good luck.
Sandy
PSP, the biopsy made no mention of fatty percentage at all and my doctor was a bit puzzled by that, he said they always say something. There was nothing at all said. I choose to conclude that my liver is remarkably low-fat and not worthy of mention! (Okay..kidding :) No kudos, PSP. I've gone back to the chalkboard and still considering options. Curses of an analytical thinker and a perfectionist. :)
Lady Lauri...thanks for going out on a limb to offer your thoughts and I appreciate your intent. I hear you. If I was a younger woman, I might choose to wait. As it is, I'm soon to be 47. I'm in a contract job and full-time permanent employment is harder to get as one gets older. I'd rather get this done now and then be able to go full steam ahead with the rest of my working life. On a personal note, I'm also single and I don't want to be single forever either. So I'd rather be single for the next year on tx instead of meeting someone and then telling them that at some point they're going to have to stick by me through drug therapy. I'd rather get that done on my own with the supports I already have. I did have a new relationship as I was waiting for results of tests to come back and he asked for the relationship with full knowledge of my health situation. He also told me he would fight this with me and as a friend if the relationship didn't fly and insisted he was in for the count. I did not ask for his support, he offered it and insisted that he would not say it if he did not mean it. Right before I was about to get my test results, I got an email to my workplace mid-afternoon ending it with no discussion and him cutting off all communication. It hit me harder than I would have liked and I am NOT going through that again while on tx. I'd rather do this while I'm single. I also have benefits right now that cover 80% of the drugs and I'm looking into the other 20%. I may not have that in the future. It just seems that a convergence of factors make this a good time to go ahead. I'm also mentally strong right now and that's important to me in being able to handle whatever comes along. There is only one mitigating factor yet to be sorted out in my head and I can't believe I forgot about it and I'm sifting through that one. I'd like to go ahead based on all my other factors but this one is a doozy and it needs careful consideration as it impacts other than me potentially.
nygirl...I identify with you. Partly because of the combo club thing :).. and also I'm a single mom of three young adults...my oldest kids are finished their college and university and my youngest is nearly halfway through. If I do this I will need to find the resources within myself to work regardless. I hear you on how being forced to go to work forces you to get yourself up and shower and dress and make yourself *move*. It made me think of other things that motivate ME and I'll incorporate those into my plan for how I'll get through this if and when I decide to proceed.
As it is....I don't want to drag everyone through my decision-making process so on that part, I'll go quiet until it's a done deal. It's important to me to work through tx and I need to know my realities so I asked that particular question and I'm truly grateful for all of you for sharing yours. Everybody slays the dragon in their own way, whether it's working.. or not... or whatever. The important thing is to slay the dragon. Good luck to everyone in that regard.
Lady Lauri...thanks for going out on a limb to offer your thoughts and I appreciate your intent. I hear you. If I was a younger woman, I might choose to wait. As it is, I'm soon to be 47. I'm in a contract job and full-time permanent employment is harder to get as one gets older. I'd rather get this done now and then be able to go full steam ahead with the rest of my working life. On a personal note, I'm also single and I don't want to be single forever either. So I'd rather be single for the next year on tx instead of meeting someone and then telling them that at some point they're going to have to stick by me through drug therapy. I'd rather get that done on my own with the supports I already have. I did have a new relationship as I was waiting for results of tests to come back and he asked for the relationship with full knowledge of my health situation. He also told me he would fight this with me and as a friend if the relationship didn't fly and insisted he was in for the count. I did not ask for his support, he offered it and insisted that he would not say it if he did not mean it. Right before I was about to get my test results, I got an email to my workplace mid-afternoon ending it with no discussion and him cutting off all communication. It hit me harder than I would have liked and I am NOT going through that again while on tx. I'd rather do this while I'm single. I also have benefits right now that cover 80% of the drugs and I'm looking into the other 20%. I may not have that in the future. It just seems that a convergence of factors make this a good time to go ahead. I'm also mentally strong right now and that's important to me in being able to handle whatever comes along. There is only one mitigating factor yet to be sorted out in my head and I can't believe I forgot about it and I'm sifting through that one. I'd like to go ahead based on all my other factors but this one is a doozy and it needs careful consideration as it impacts other than me potentially.
nygirl...I identify with you. Partly because of the combo club thing :).. and also I'm a single mom of three young adults...my oldest kids are finished their college and university and my youngest is nearly halfway through. If I do this I will need to find the resources within myself to work regardless. I hear you on how being forced to go to work forces you to get yourself up and shower and dress and make yourself *move*. It made me think of other things that motivate ME and I'll incorporate those into my plan for how I'll get through this if and when I decide to proceed.
As it is....I don't want to drag everyone through my decision-making process so on that part, I'll go quiet until it's a done deal. It's important to me to work through tx and I need to know my realities so I asked that particular question and I'm truly grateful for all of you for sharing yours. Everybody slays the dragon in their own way, whether it's working.. or not... or whatever. The important thing is to slay the dragon. Good luck to everyone in that regard.
I am so happy to hear that your bx came back "as good as it gets" !!! Congrats on that - Did you happen to ask about the bx showing any fatty liver?
I am also happy to hear you decided to treat it now...Kudos to you girl! I have 12 weeks left out of 48 and it is almost over - wonder where the time went LOL
Good luck Beth
I am also happy to hear you decided to treat it now...Kudos to you girl! I have 12 weeks left out of 48 and it is almost over - wonder where the time went LOL
Good luck Beth
I worked thru 72 weeks of treatment, it wasn't always easy. I told my direct report bosses the truth of what I had and swore them to secrecy (I wanted them to know just how difficult what I was doing really WAS). I just told everybody else I was on "chemo" (since treatment IS chemo it wasn't lying) and then just let them think what they wanted. Of course some rude noseybodies were like "oh what cancer do you have" (idiots, at least I learned how rude THAT is to do!) and I just said "oh I really don't like to talk about it, I'm sorry".
That way when I fell asleep at my desk at lunchtime - or had that horrible bout with the anemia (it was pretty drastic) and then I started looking like a grey skinned skeleton with no hair and sunken eyes - they knew why.
I just didn't have a choice - as a single mom I couldn't lose my insurance or pay!!! I just had to come in and couldn't take the chance of going out on disability. After all they say they have to give you A job when you come back but not necessarily YOUR job (and many companies play the game then later say the new job isn't necessary and lay you off), just couldn't chance it.
I'm a geno 1A/1B too. I'm very glad I came in to work because it helped take my mind off things. It would have just been so easy to spend those 72 weeks laying in bed getting depressed. Getting up and showered and dressed nicely every day helped me maintain some feeling of myself.
Good luck. It's not an easy decision to make.
That way when I fell asleep at my desk at lunchtime - or had that horrible bout with the anemia (it was pretty drastic) and then I started looking like a grey skinned skeleton with no hair and sunken eyes - they knew why.
I just didn't have a choice - as a single mom I couldn't lose my insurance or pay!!! I just had to come in and couldn't take the chance of going out on disability. After all they say they have to give you A job when you come back but not necessarily YOUR job (and many companies play the game then later say the new job isn't necessary and lay you off), just couldn't chance it.
I'm a geno 1A/1B too. I'm very glad I came in to work because it helped take my mind off things. It would have just been so easy to spend those 72 weeks laying in bed getting depressed. Getting up and showered and dressed nicely every day helped me maintain some feeling of myself.
Good luck. It's not an easy decision to make.
Hi, bare with me in commenting as I started tx Tues.up too late and tired and no pro in this yet:}
BUT, I hope some of the pro's will chime in here. Your grade, stage are both low, in other words no rush for tx. The trial's going on now -Vertex, Alinia, Albuferon ( I'm in) and others are very promising. Albuferon is in phase 3, expected to be out @ 2009. These will than be bi-weekly and even monthly shots, less sides, better tolerated, comparable and better results for type 1 and non-responders ( I am 2b).
With the possibility of not ‘putting your life on hold’ so much for a year, and an easier time at it, have you considered/ researched all these things? Just some thoughts and forgive me if I have missed other post of yours on this-I try to keep up :}, just so many of us and so many post.
Also, I really hope you have some support people in this with you (as you said-live alone, no relationship) as I can't imagine going thru this without mine. You'll have all of us :} but some genuine hands on TLC helps so much.
Best of luck to you however you go.
lauri
BUT, I hope some of the pro's will chime in here. Your grade, stage are both low, in other words no rush for tx. The trial's going on now -Vertex, Alinia, Albuferon ( I'm in) and others are very promising. Albuferon is in phase 3, expected to be out @ 2009. These will than be bi-weekly and even monthly shots, less sides, better tolerated, comparable and better results for type 1 and non-responders ( I am 2b).
With the possibility of not ‘putting your life on hold’ so much for a year, and an easier time at it, have you considered/ researched all these things? Just some thoughts and forgive me if I have missed other post of yours on this-I try to keep up :}, just so many of us and so many post.
Also, I really hope you have some support people in this with you (as you said-live alone, no relationship) as I can't imagine going thru this without mine. You'll have all of us :} but some genuine hands on TLC helps so much.
Best of luck to you however you go.
lauri
Scary really, reading these comments. Total reality check and good thing.
My results are comparatively good. I'm Stage 1, Grade 1. Genotype 1a/1b. I did get copies of my reports - both bx and blood test, thanks to all for the suggestion.
I've been thinking hard the last couple of weeks about what I want to do and I'm going to aim for tx come Jan. 1 at latest. I know it's no picnic but all the factors in my life line up on the pro side and the only thing on the con side is that my life goes on hold for a year (and some) and that it could be a helluva ride. And those con factors will exist later as well and if it's going to impact my job, my current contract job is the one I want impacted, not the fulltime perm job I'll go after when I'm done tx. I'm mentally ready to take this on and I'm a bit scared that if I wait there may never be a better time than what I have right now. I have no relationship right now and I live alone and for me, those are on the pro side. For me, this is the latest I want to be doing this in my life as I'll turn 47 end of January and if I was going to choose a time to disrupt my life in this way...now would be it. So will continue to get my ducks in a row and once they're as good as it gets, I'll get started.
Thank you so much to everyone for the input on all my questions the last while. What I appreciate most is the blunt honesty and no candy coating. It has allowed me to reach a placid place for which I'm very grateful. I hope I can extend the same sort of grace at some point to others and I wish all of you the best in return.
Trish
My results are comparatively good. I'm Stage 1, Grade 1. Genotype 1a/1b. I did get copies of my reports - both bx and blood test, thanks to all for the suggestion.
I've been thinking hard the last couple of weeks about what I want to do and I'm going to aim for tx come Jan. 1 at latest. I know it's no picnic but all the factors in my life line up on the pro side and the only thing on the con side is that my life goes on hold for a year (and some) and that it could be a helluva ride. And those con factors will exist later as well and if it's going to impact my job, my current contract job is the one I want impacted, not the fulltime perm job I'll go after when I'm done tx. I'm mentally ready to take this on and I'm a bit scared that if I wait there may never be a better time than what I have right now. I have no relationship right now and I live alone and for me, those are on the pro side. For me, this is the latest I want to be doing this in my life as I'll turn 47 end of January and if I was going to choose a time to disrupt my life in this way...now would be it. So will continue to get my ducks in a row and once they're as good as it gets, I'll get started.
Thank you so much to everyone for the input on all my questions the last while. What I appreciate most is the blunt honesty and no candy coating. It has allowed me to reach a placid place for which I'm very grateful. I hope I can extend the same sort of grace at some point to others and I wish all of you the best in return.
Trish
i worked through two tx and maintenance, it was no fun and frankly i barely maintained...........also i never told anyone, but i did make a cover story about being anemic, which was actually true due to the effect of the meds. I agree with those who never disclose.................but if your about to get fired i would raise the fmla flag as a defense..............to be honest i'm not sure i could do it again.
I agree with everything Deb said.
I haven't worked in ten months and won't even think about going back until I've finished the 72 weeks.
it's been a rough ride for me, too, but everyone is different.
I wish you all the best.
wyntre
I haven't worked in ten months and won't even think about going back until I've finished the 72 weeks.
it's been a rough ride for me, too, but everyone is different.
I wish you all the best.
wyntre
Everyone is different. I have to take call and after working all day I sometimes have to go back in and work all night, then back in with maybe with an hour or two of rest (not necessarily sleep). My job is physically and mentally demanding. Serious errors can cost someone their life or me a job. I usually push myself as hard as I can. I'm not as young as I once was. You just do the best you can. Sometimes I can't think straight and I have to take a day off. I no longer feel guilty about it either.
Most of the time it's just a little harder than normal but not impossible.
There are so many factors that go into your ability to work full time. Just do the best you can and don't compare yourself to anyone else. You may breeze through tx without any problems. If not, take care of yourself, a year-year and a half will go by (they go by quicker with age) and it will just be a memory. Good luck.
Terry
Most of the time it's just a little harder than normal but not impossible.
There are so many factors that go into your ability to work full time. Just do the best you can and don't compare yourself to anyone else. You may breeze through tx without any problems. If not, take care of yourself, a year-year and a half will go by (they go by quicker with age) and it will just be a memory. Good luck.
Terry
Just take it how it comes.. some have barely any sx , others get one thing after another, best thing it seems as a new one comes in, another subsides. So just see how it goes. I am currently working, but at week 13 I did take off for 5 wks. I have been back at work for for almost 6 months now I guess, without doing calculations this early in the morning. I have about 8 - 10 shots to go, depending on whether he lets me stop at 48, but for some reason he is using a 12 month marker rather than actual weeks. I was thinking of going back out again on leave, but I am starting to feel alot more energy these days, and infact last saturday, I cleaned my whole house by myself., the week before we got rid of alot of junk around the house, and took a trip to the dump to get rid of the clutter. It is doable, just hang in there, If you start to become anemic, your body adjusts to the meds they give you for that, and you start to become accustomed to feeling so fatigued. I pray you have minimal sx and that you can continue to work.
I will receive my first meds on Tuesday of next week and will take 1st shots and pills on that day. I have a full-time and part-time job, wondering if I will still have the energy for both, particulary with this new hyperthyroid problem and low neutrophils. Taking methamizole for the thyroid. African-Americans tend to have low neutrophils. I belong to the toughest population to treat. I hope I can beat this thing and be a ray of hope for others. Any advise or suggestions on beginning treatment?
Have had this constant dull pain inside for some time and it's too easy to think what it could be so will be finally glad to get it known and carry on. Thanks for the good wishes and the crossed fingers. Six more days and I'm keeping busy to make 'em fly. Speaking of which.. out the door for a ladies only weekend...
Hope EVERYONE has a terrific weekend whether it's quiet or busy......take care, all.
Hope EVERYONE has a terrific weekend whether it's quiet or busy......take care, all.
I'm sorry it's been a rough go for you and many, Deb. Thanks for the reality check. That's what I come here for. Reality. I wish these stories could be for everyone too...and SVR all around. Sigh. In the absence of that, wishing strength courage and much support all around. And random moments of beauty to shine into your lives just when it's needed most.
Well. Some more ducks to get in a row. Thanks for all the comments to date.
Well. Some more ducks to get in a row. Thanks for all the comments to date.
i think these stories are fantastic, and i'm jealous.....
for me, continuing to work didn't work out. probably because i got fired around week 16 for performance. i had also had a very serious viral illness about week 11 that had me missing a week plus of work ...high fevers and so on. I did manage to make it through 16 weeks of working, however. the trouble with the job didn't start until four or five weeks in.
my internist has had lots of patients with HCV and says that every single one has adjusted their work schedule, whether it be not working and going on leave or reducing hours, etc.
i'm not peeing in anyone's cornflakes, it is just that it really is different for everyone.
i just wish these stories could be for Everyone...i think they are great.
deb
for me, continuing to work didn't work out. probably because i got fired around week 16 for performance. i had also had a very serious viral illness about week 11 that had me missing a week plus of work ...high fevers and so on. I did manage to make it through 16 weeks of working, however. the trouble with the job didn't start until four or five weeks in.
my internist has had lots of patients with HCV and says that every single one has adjusted their work schedule, whether it be not working and going on leave or reducing hours, etc.
i'm not peeing in anyone's cornflakes, it is just that it really is different for everyone.
i just wish these stories could be for Everyone...i think they are great.
deb
been on tx weeks now and i havent missed one day of work, and no one knows i have it, its none of there business.. Only one girl there that i talk to and her sister has it, so she wont say anything.. yes u can work while on tx,my Dr highly recommended it somy body would stay healthy and use todoing what it always does, the worse case scenario tome is i get out of breath real easy if i have tolift heavy stuff, but look on the bright side everyone situation is very different in some ways.. just be positive and look at it like its just something we cannot change.. just let the LORD have it, he is in ctrl..May GOD BLESS ALL..
Hi, I'm in week 16, and my hemoglobin has dropped to 10.5 so it makes chasing after the kids I watch challenging. I work at a christian school supervising the extended care program...I work 5 hours a day, and wouldn't want to do 8 right now, unless I had a desk job, then that might be ok...I think we do what we have to do...I hope your biopsy results come back 1, and wish you all the best!
I’m working and have not shared my condition with anyone. As Trish said, once it’s out, it’s out and I am a very private person by nature. Having said that my job is rather public, so it’s getting hard with the hair loss, puffy eyes and skin condition. I'm going to be wig shopping! Other than that I actually feel pretty good. I have started using the excuse that I’m having problems with my thyroid – which has become more suppressed. And since most of us need to work for money and insurance, it can be a challenge!
The 70 weeks was a total two tries of 24 and 46 with about 10 off months in between. See what the bx says before any tx decision and then, in time, these kinds of things follow in order. WIth hcv you need to methodical, can't jump steps normally.
That's a helluva record, FlGuy. 70 weeks on treatment which is a very long time...and only missing 3 days. That's a better record than people on NO treatment.
You're right, Libby...if I head into tx, I won't know what comes my way til I'm in and I'm up for that.
You and FlGuy didn't know either... but you did it anyway and you hung through. Pretty damn impressive and gives me hope. Thank you to both of you for sharing this.
You're right, Libby...if I head into tx, I won't know what comes my way til I'm in and I'm up for that.
You and FlGuy didn't know either... but you did it anyway and you hung through. Pretty damn impressive and gives me hope. Thank you to both of you for sharing this.
oopps sorry - brain fog, didn't see your nreply - I am glad it went well and I so hope it is the best it can be.....I'm betting on a 1
Hi Beth...saw your post and answered even...all in all, smooth sailing. Results a week today..will be glad to know and then get on with it. Thanks for your thought.
Trish
Trish
My health is none of my employer's business. The obligation that I have to the business is performance. I expect no pity or accommodation. After a total of about 70 weeks on treatment, I missed maybe 3 days due to illness. Sprinkled allotted vacation time around to help me keep pace. Be reaaaal careful before you utter anything about hcv or treatment in the workplace. It will never be the same and you can't take it back.
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