Treatment and maintaining a job

One of my main concerns is how I will function in the day to day life activities.  I wonder if I will be able to work and do the treatment.  I am already so tired all the time.  My muscular aches and pains can be overwhelming.  I have not started treatment as yet and I also wonder what to tell my job regarding my condition.  Any thoughts and comments are appreciated.

[friole]

Hi, Miss Hopeful.  Maybe you can tell us some more about yourself - VL, genotype, biopsy results --- You say you already are so tired - does that mean you already have significant liver damage?

The tx affects each person so differently.  I think the pre-treatment anxiety is almost worse than the treatment.  I am fairly new here - up to 6/48.  I don't have significant sides except some days I am quite tired.  I hold a full time job and have not had to take any time off yet, although there have been some days I have not been too productive.

I am sure some others will chime it.  Welcome to the forum.  You will get a lot of good information here

[danity]

hi miss hopeful, im afraid i cant offer any advise on rather or not you will be able to work or not because i'm wondering the samething about myself. as friole said in her comment, this is a wonderful forum with a host of information. i've not been in the forum long but i have never posted a concern or question that has'nt been answered. i start tx in about a week & the  anxiety is huge. the people on this forum have been wonderful offering their experience's & advice. best of luck miss hopeful & god bless.

[snook_man]

I'm currently on week 44/48, and have only missed a few days the entire time. Mostly because I am just lazy and had an excuse to call out. I work on my feet all day, and by no means get it easy.
The meds will only effect you, if YOU allow them to. The anxiety of treatment is worse then the treatment itself.

[SnoWav]

I think keeping a job and staying active is very important in combating the symptoms of TX.I have taken 6 hrs of sick time in the past 29 weeks of TX.Staying busy all day is less time to dwell on how you are feeling.I had many aches and pains before starting TX even arm numbness all that went away after I started TX,sure I have the achey (achy) flue like stuff but tylnol helps that.I am not saying that I am at a picnic but for me working is what gets me out of bed and out the door.I am 1a so only a 50/50 chance of clearing,Don't want to waste 11 months going to live each day like Im dying.Looking foward  jeff

[miked]

I completed 36 weeks of PEG-Intron + RBV and worked everyday.  Fortunately I own my own business and was able to hide in my office on the bad days.  Take the anti-depressants to keep from going nuts; Tylenol for the headaches and flu-feelings and do your best.  I didn't clear but am glad I tried.

Mike

[dodger1]

I am on week 10  and some days I wonder the same thing if I can go on at work.  I just told some people at work that I was having some medical problems and my white blood cells were real low.  Some days I could not breath at work and they would ask.  I am a mail carrier and my hemoglobin is at a 9 right now and my white blood count is at a 1.8.  I am expecting my procrit in the mail tomorrow so I can function better.  I asked my boss today if he could cut off part of my walking on my mail route for this winter because I am scared to death about getting sick and he said he would.  I think my sides will get better when I get this procrit in my system.  I HOPE!!!  Best of luck to ya.

[What Next]

I was wonder the samethings about work. I have been sick alot over the last year and a half extremely sleepy. Just found out more results today I am chronis Hep type1 viral 10 million . Liver Biopsy Monday but from what I have been told probably alot of liver damage already. I can't even imagine putting my family threw the side effects of the drugs . I have been a BIG pain in the but for the past year and a half. Was fired for the first time in my life for attendance policy and fitness for work. Got a new job last Feb I am like my own boss I take a break when ever I need to. I think that is why I have been able to keep working. I was actually relieved I am not just going nuts that all the aches and pains and lazyness has a cause. But I can't even take a tylonol withou falling asleep for hous. Low toterance to all meds. Sleep for two days with one darvacet last year for back pain. New took another one of those. Doctor already talking about disability for a while. I can live off that or live like that. So now I am at the stage should I do this treatment or just let this thing run its course. Are there any new drugs to fight this thing Beside peg and co- peg?

[virtualsuzyq]

Hello to all.  I am finding all your comments very helpful.  I agree about the pre-treatment anxiety being bad.  I found out today that I will have my first injection tomorrow.  I'm scared but my anxiety level seems to be lessening.  I think working during treatment would keep your mind off sx.  I retired last year and will have to push myself to get out and walk, etc.  I'll let you know how the first shot goes.  :)

[avidreader]

I was also very fatigued and having trouble keeping a full schedule prior to treatment. I'm in week 9 of inteferon only and week 5 of inteferon/riba now, and so far, feel about the same, but at least I know what's going on. I'm still working full-time and coaching a couple of nights a week as a volunteer, but I sleep A LOT in my downtime. Lucky to have a husband who is willing to take over the cooking and cleaning (well--he didn't really have much choice, as my health began to deteriorate over the last 2 years.)

I echo everyone's comments on the fear/anticipation of treatment sometimes being worse then the actual treatment. I chose treatment, because I would do almost anything to get rid of this mind numbing fatigue. I expected much worse but so far have been pleasantly surprised by how little it has impacted my day to day stuff. Probably speaks to how poorly I was functioning in the first place--it just crept up on my over the years.

Of course, I have months to go so I'm sure the road ahead will be full of challenges and surprises, but so far, so good.

Best of luck to you.

[cougareyes]

Eveyone's different, when I was considering tx I knew 2 people who had went thru it. Both of them told me that there was no way they could work. One guy was a fireman, needless to say a big strong in shape kinda guy. He said this stuff knocked the stuffings out of him.
I took leave for 4 weeks to start tx and am glad I did, I couldn't get out of bed for the 1st 3. I,ve done shot #8, got some blood drawn today; my reds and hemo have been declining.
The last 3 weeks I returned to work an average of 15-20 hrs a week. I'm just lucky my job let's me work the hours I feel I can.
I am just at the point of being able to do the things I need to do, If I don't have to do it, I don't. I'm still concerned about getting myself up to 32 hours a week at work, to make sure I keep my insurance.
I'm not sure why people react so many different ways to this tx, but it's the same as the way everyone progresses so differently to this disease.   Thanks for listening

[friole]

I think there is a lot to be said about staying busy.  I tend to dwell on things when I am not busy.  I must learn to take more naps on the weekend tho.  Tried this weekend.  Would lay down for about 30 seconds, think of something I wanted to do, and get back up.  But even those 30 seconds helped.  

I think you have to be realistic.  If you can work, you should , but if you feel you can't, then don't beat yourself up.  The Janis7hepc websight has a whole section on appplying for disability and what your rights are in the workplace.

http://www.janis7hepc.com/Ins%20&%20Financial%20Aid.htm

virtual suzy - will be thinking about you tomorrow.  If you feel like it post tomorrow night to let us know how it went.
Kathy

[friole]

I remember that you were having a really rough start.  It is encouraging that you are able to work part time.  What about that family leave act - would that be a way around the 32 hours per week to retain your insurance?

I think what you said is important.  You do what you need to do and leave the rest.
Kathy

[Forseegood]

Hi, I thought I'd chime in here, I'm waiting to do treatment. I guess all you can mostly get is anecdotal info in that there haven't been many studies on this, that I know about anyway. I talk to many hep people on boards and support groups, etc. and it's really all over the board, to my mind. I personally don't think that it's all in the "head" or totally dependent on your attitude with everybody, there are just too many variables going on in human health...other systems are involved besides the liver. And we are all different with different things going on in our bodies, liver damage, age, etc. I know a fireman also, 42 years old, really big "work ethic" type of guy who was really pretty healthy...has a family and worked two jobs for many years to get ahead. The first few weeks on treatment he knew he had to give up one job, then when he just couldn't get past the profound fatigue and weakness he got from taking the meds, he was devasted to find he had to give up being a fireman and go on disability for the duration of treatment and for awhile after. I also know a woman who had some health problems and fatigue, etc. who is seeming to sail through it with few symptoms and has been able to continue working, the meds actually helped her fatigue. I also think the type of job one has might have something to do with whether some people will be able to continue working. A friend of mine who is a real estate agent, has to be "on" all the time and very social, running around all over the place, knew in one week that she wouldnt be able to work, after screaming at a client (she was taking anti d's) and dragging around. She said she might of if she could work from home or just had could to bury herself in a cubicle without seeing many people. But the guy across the street  couln't hardly get out of bed, and he is a really big worker off the meds. So for me I'll take a wait and see attitude about it, because I want to prioritize my treatment and not push myself to the point where I burn out too bad, I've heard this happen with some people who tried to work but couldn't. Luckily, I work from home and I've had to cut down hours due to fatigue anyway. I realize not everyone can do this. I just hope one day soon they'll offer meds that are much less harsh.

[cougareyes]

Yes I have taken the time so far under the FMLA. Right now I'm still in good shape, there are 12 weeks a year covered. I'm not sure how it's calculated, whether it;s from your hire date or annually from the 1st of the year.
The hard part is my mind is getting more alert and I'd like to be doing something, but my body just won't co-operate. Good Luck to everyone I hope your ride is smooth.
Alot of people say when people are feeling good they are not posting. Well I'm opposite, I haven't been feeling very good so I just haven't felt up to posting. I have felt guilty and bad that I feel so bad. But I know I'm doing the best I can, I just want to be clear of this virus.

[Laika]

I just finished 24 wks of treatment.  I tried to plan for being sick from the drugs.  I have my own business, so hired someone to do all the outside work.  Just as my busy season came on, he ended up in the hospital with bypass surgery.  So, as it turned out the very thing I dreaded was what happened:  to be up to my eyeballs in busy season with no help, doing everything myself and feeling soooo tired from the meds.  Somehow, it all went ok.  Being insanely busy made the time go by faster.  I didn't clean my house for the entire 24 wks.  My husband cleaned it when it began to offend him.

There are no predictors for how you'll feel--part of the pre-treatment anxiety.  Somehow, though, most of us muddle through, so take heart!

Laika

[Andy Capp]

Interesting that I came across this subject today.  Yesterday, I applied for FMLA because at week 26/48, I need to develop a game plan better than to "bull through" the treatment.

Besides the fatigue, flu symptoms, etc., I started experiencing what others have called "brain fog" (forgetting things, losing concentration) and depression.  So, I'm taking a couple of weeks off to start excercising more and getting more sleep.  Then, I plan on starting back to work on a 30 hour-a-week schedule until I feel that I can do more.  This "restricted-hours" plan can be "career-limiting" but hey, health comes first.  Fortunately, I have 240 hours of sick leave on the books; I can also use vacation time if I need it (can't afford leave without pay).

Everybody's different...some breeze through the treatment; others need to stop early.

There just isn't a simple answer other than go into the experience with a positive attitude about beating the bug and deal with whatever symptoms come your way.  I look at the adverse effects as the battle between the drugs and the virus and I stay focused on the ultimate positive result once the treatment is over!  

[cuteus]

what next; it seems that you are already pretty incapacitated from the hep c, so the meds might not be as bad as what you are presently going through as you can read from others. Letting things run its course could mean ESLD and that won't be better for sure.
I hope your biopsy shows mild damage, let us know.


How the meds affect you can have an assortment of reasons, from the individual's system to the type of meds used (many state that Pegasys have been easier to take), to how quickly drs intervene with the sides. Many of the latter allow people to drag around with low hgb, seriously affecting their QOL. Insist on early intervention so that you can continue your everyday life or as close to it as possible.
You will not know until you try, no other way.
I dragged through 72 wks of poisons and might have taken one full sick day, the rest was time for appts and tests. Of course, I have mostly a "desk Job" and was content staring blankly at the monitor for hours, I could not have continued if I was an air traffic comptroller...without crashing something else besides myself...(dark humor needed while on Tx).

[Imagine]

There are too many factors involved to be able to answer for everyone on this subject. Age, type of work, pre tx condition amount of liver damage, various blood counts and on and on. Snook I know you mean well and I take to heart alot of what you say but to say the meds will only effect you if you let them is a little unfair to those of us that may be struggling. There is enough to feel bad about let alone feeling we are allowing ourselves to feel the way we do when many times it's all the other factors involved that are the true cause.

[chellski]

hi, i'm on week 20 and work part-time.  however i'm not as tired as i was b4 tx...if i didnt have to go to work i could stay in bed all day - but knowing i have to go gets me up and out.  that and driving kids around all day & night..keeps me busy and on my down time, i rest, and sleep very well at night.
good luck you can do it.
michelle

[Forseegood]

Glad you said it. Not that I want to castigate anyone, I'm not a grade school teacher, but I think it's really important that we put opposing views out there for newbies, when indicated. While I think attitude is really important - there is an article put out today how  a study found that the reason "placebo" effect worked so well in some people is that people can actually induce their own endorphins for pain if they truly "believe" a drug will work... something we all knew anyway. And I believe that working probably helps many occupy their time while they are going through the treatment time which is probably a lifesaver. But there seems to be many who just can't work, they are too debilitated by the meds, even if they are using other meds to counteract the weakening agents. They shouldn't be made to feel guilty that they are presenting too many symptoms and are too severely weakened by them. I can't forget the time when a well regarded hepatologist told me that my symptoms are probably from some "other" illness (what does that infer?) because I'm only a stage 1 and the only people who really experience hep c symptoms are people who are cirrhotic or esld. I told him that I know people who are cirrhotic and they hardly have any symptoms at all? That he couldn't answer. Guess he just figured they had strong characters and I didn't. It's hard being invalidated like that and I'm ashamed to say that I secretly wished that he would have to walk around in my body for a week and see if he sang the same tune. Thankfully, my present hepatologist says this is too multi-factored and that some can have a high function rate using less of their liver, while others can't. Prolly same thing goes for the meds and how people present.

[snook_man]

Just to set the record straight, I'm stage 3 fibrosis.. Genotype 1a, and work a minmum of 40 hours a week. I am a retail service technician, so I travel daily and am on my feet ALL day. No desk job here. I lift heavy objects all day and work with power tools. Of course I don't feel my best all the time, but I suck it up and get the job done. I have maintained full doseage the entirity of of my tx without ANY drugs to compensate, and Dr's have suggested my high Hemo and RBC's to me staying active. I even go to the gym 2 or 3 days a week and do light excercise and lifting.

Difference here, is I REFUSE to sit around and feel sorry for myself. 48 weeks is a long time and if HCV is gonna kill me, I'm not gonna sit around for the time I have left. I'm gonna keep enjoying every minute of it. Yeah, I feel like **** many  days of the week, but life goes on, and so will tx. The key to tx is staying active. If you sit around and dwell on your sx's, your gonna go crazy. You have to keep your mind occupied and positive.

Again, the meds are only going to effect YOU, if YOU let them!

[Forseegood]

Be great if we all had your body Snook, your other organs, glands, etc. Your age. The whole body is effected by the virus and the meds, not just the liver. And being that you are not a woman, you don't have certain hormonal factors that we have to deal with, ever try menopause and hep c? The liver has a lot to do with the hormones, hormones have a lot do with every body process. Women have this to deal with and have presented a lot more thyroid related factors than men doing tx. Thyroid will kick butt. So many varying factors, too many to name here even if I could. Because of these extraneous factors, genetic factors, it's impossible for me to say, well, I've had this disease close to 30 years and I"m  only a stage 1?...what's with you having a stage 3?, buck up why don't ya? Lifestyle does play into it but so do so many other physiological complications. I feel sorry for docs and researchers because they are wading around in a sea of complications that they only have inklings into. DNA is mind boggling.

Truth is some of us have genetic propensities to certain diseases, arthritis, mental conditions, osteo conditions, etc. that can get kicked in prematurely by the meds. What can we do about our genetic backgrounds? Last week my girlfriend and I were drinking some new fruit drink at the health food store, she broke out in a rash all over. I didn't. Was I utilizing some "strength of character or mind control" that she didn't have access to? Nope, she's got a different body than I have, pretty simple.

[Imagine]

Who said anything about sitting around feeling sorry for yourself? Some of the most positive, courageous people I know are unable to work on tx. I am not trying to argue with you and agree that your outlook can play a HUGE role in how you feel and tx effects you. I agree you should be as active as you can and to try and fight off the negatives aspects of this disease and the tx used to kill it

I am on wk6 of 72, stage 3 grade 3 and so far doing pretty good on tx. I work out every other day and try to walk a couple miles a day, fish as often as I can and am 54. But man the meds can effect some people such as extremely low wbc or rbc. I don't want them to feel bad about themselves if they are unable to work by thinking they let the meds win over their mind's will

[snook_man]

Well, I'm one of the younger ones and my immune system is as strong as it gets. My starting VL was only 4000, but I was also a stage 3. But then again, I was infected at birth 28 years ago. I do not know what feeling "normal" is, as I have always lived with HCV.
I know that these meds suck, but they work. It takes awihle to get used to feeling slow and achey (achy), but you do get used to it. You begin to find ways to still function and get along with daily life. I admit, at first I thought I couldn't make it. Hell, my first attempt at tx I only lasted 6 days before being ordered off the meds by my DR. But I had built up this intense inner fear of tx, and alot of that anxiety amplified the initial sx's. I was pulled off and was soooo shaken I had made it up in my mind that I was going to wait. Try supplements and wait for something else to come along.
Right around the same time I started researching. I read EVERY article I could find, every forum and bulletin board, and every new clinical. I was obsessed with the disease and trying to rid my body of it. The more I read and asked, the more confident I was about retrying tx. I waited about 4 or 5 months, and started again. My Dr's believed that I was allergic to the meds from my first attempt, so I was taking a big risk. I started the meds, and never looked back. I'm now on week 44, and have been clear since week 12.
I know how bad the meds are and the possible sx's. My WBC's have not gone higher than 1.8 since week 4. My netrophils have not gone over 1000, and are currently 683. I'm fighting with every ounce of my body, and still get up and out of the house each and every morning to go to work. Alot of the sx's are in the mind. The mind is our most powerful weapon during tx against this dragon. Our own mind can heal us, or break us. That is why I recommend researching and learning about the disease and ALL the possible sx's before starting, and making a confident personal decision about how YOU are going to proceed. You have to remain open minded and know when to ask for help. You have to know what to expect, and what to look for. You have to be able to self diagnose symptoms, and talk them over with family and your Dr. I needed Xanax, and Effexor to get through. At week 30 or so, anxiety hit me hard. But I knew what to look for and I talked it over with my Dr. As soon as I got the script, I was right back on track. We all have to be proactive, as it is OUR health, and OUR livers...

[Forseegood]

I respect what you say Snook, and I'm glad that you are fighting it with all you've got and did all the research, etc. I've talked to you a lot and I hope with all I've got that you achieve SVR. But you still don't seem to realize that we are all "not you." Everyone is different with a different set of circumstances that they are dealing with. I happen to know youre relatively young, that could go a long way to help you get up and out the door to work, some of us can't even get to the door. I personally do all kinds of mental meditations and affirmations, trying to get through this with all the help I can get from my feverish little mind.

I need all the "mind healing" I can get, and it works for me most of the time. When I can concentrate. But all things remaining the same, some other person might have a messed up pancreas or something like that that is making their tx experience excrutiating. Any number of things that you are not dealing with.

That's the point I was trying to make to you.

[Forseegood]

I just wanted to apologize to the people who are about to begin tx or considering it. I guess in trying to make my point to Snookman that although there probably are people who sit around and feel "too sorry for themselves" and avoid working, which would make them feel more occupied and help take their minds off tx, I don't think they are in the majority, by any means. I think it more or less shakes down to the fact that there are some people who feel well enough to work on tx, while others just can't, even if they really, really want to and are very mentally motivated. These people shouln't be made to feel guilty with judgments like that. But in trying to make my point, I probably said some scary things about tx and it's possible consequences. I say "possible" because not everyone will experience a lot of negative effects.

I'm the type of person who wants to know all the negative and positive consequences in making this decision, in case I get some of these bad sides - I want to know it's only a side, and I'm not dying, ha ha! But maybe some people just want to go ahead and jump in without knowing all the scary stories and possible outcomes. And I do agree with some that maybe a lot of people are having an okay time with tx so they don't feel the "need" to post. Of course the anxiety surrounding doing the meds can be brutal and not helpful.

I do see a lot of people who are starting out on the meds, and they haven't had the disease too long or they are relatively young, which can only bode well for the sides issue. Age does play a part. The younger you are the younger your immune system is and you can probably take the meds a lot better, stands to reason even though this is not always the case.. . I personally believe that some can wait for better meds, but not all. There are others who belive that all people who have this should go ahead and treat. There are many issues to consider with your doctor for your own particular case.

[hiya24]

It seems to me that there are no bad decisions at all regarding working or not working during treatment. Treatment and the associated side effects are so individual that we all need to make the best decision for ourselves and our  famililies.  

I was prepared to continue working through my 48 week tx. Started out fine and then hit depression and sleep/exhaustion issues around week 19-20. As I sat crying in the bathroom at work one day, I realized that the stress of my daily work was not helping me and I was not doing my employer any favors by being there and not giving it my best. More importantly I was struggling to maintain myself for my family (two young boys, 8 and 5 ).  

Fortunately, I have been putting into disability with Jefferson Pilot for several years now and was eligible to apply for STD and got it. This covered me for 13 weeks and now am in the process of going for long term. Don't know yet if I'll qualify but after a phone call from the benefits specialist at JP, I am encouraged.  The truth is that this treatment is a tough one for most of us (I haven't heard of many that don't experience some repetoire of the possible side effects) and much to my surprise these private insurance companies do know that. In most cases it is also a temporary medical condition and the sides are reversible when tx is over.

I know that all employers don't offer this benefit and I count myself extremely fortunate that my does.  The coverage varies as well. I get ~ 55% of my base salary which helps tremendously but would not be enough if my hubby didn't work as well.

Good health is not overrated and in my opinion, worth focusing on when needed. If that means not working for a while and getting through this tx, then so be it.

I know STD/LTD is not an option for everyone on tx but thought it should be mentioned in this thread.  

[Califia]

Foreseegood said it very eloquently.  All I can do is reduce _one_ of her lucid observations to convenient billboard size for easy recall:

A 28 year-old body handles chemotherapy differently than a 54 year-old one.

Let us not extrapolate from this any conclusions about weakness of character or the powers of positive thinking and all the rest of that  simple-minded rot.  

Oh, and thanks for your congratulations on my finishing 60 weeks, heavy side effects and all.

[Califia]

Just so.  My God, what derangement!!

[Califia]

Hey!  Thanks for asking.  All's good.  The Hgb held, and I  insisted on PCR's at 1 month- and 3 month-post.   (Arm wrestled with the nurse who advised me to wait 6 months, but relented when she saw I wasn't going to budge on this.)  Then I got a call from the doc who applauded my PCR schedule and suggested that we continue testing every 3 months for a year, even approving a new biopsy in a year's time.    Hallelujah!  It just takes persistence and jumping through a few hoops.  It would help, of course, if there were more actual communication between the doctor and his nurse, who is the one who issues the lab slips and actually oversees treatment.  Idiotic, yes indeed.   Thanks for the very useful info, tho'.  I will  definitely file it away for future reference.   How are you holding up?

[Forseegood]

Thanks for the kind words guys, you can relate I guess, I'm a little hormonal and wound up these past few days - ech! Hope you have a FAST FORWARD TO YOUR POINT button on your puters, ha! They'd make millions with a patent like that!

[cuteus]

Ina; and when all four are filled, unfolded, let everything fall under them and open them again...drag on!

Snookie; i am so glad you made so far and in good spirits, and that your HGB held well, that one makes a HUGE difference,as anemia can incapacitate, but mostly it causes aches, fatigue, depression, brain damage and anything oxygen deprived cells and organs can get. It might take God's mind to restore red cells in our blood, but you are right that dragging the body, forcing it to go, will  be better in most instances, because the distraction will lessen the dwelling on sides, that is how Lamaze works, by distraction, but the anemia is still there.  And many people don't have the stamina to do this daily after their bodies secret battle with HCV for years.  I just wish the drs would not let anemia drag in so many folks, and that people would insist on Procrit, if insurance  will pay. these are some of the symptoms some people have complained about on tx:
http://www.emedicinehealth.com/articles/4893-3.asp
and then you have to add other conditions that folks have that might add to THAT list, it can be a killer. You and I had it "easy" compared to some.
stay well

[cuteus]

I just read my post and when I saw "unfolded" and I was thinking unfold it, i worried. it happened to me a lot on tx that similar sounding words or phrases were used instead of the actual work, I have been paying attention to how people write and I see it a lot with the tx, but also with folks just with hep c status and no tx. or maybe is just aging?
grrr

one of these days I will show you the pics I took of my apartment as is now, I hope to have the "after" pics to go with them. over 5 yrs of storing and saving...need a dumpster.
I found a forum in delphi; cluttered lives, I will check it out someday. I am also a procrastinator...not a good combo; Pack rat and procrastination.

[Califia]

I am no well-heeled lady of leisure, but to celebrate the end of treatment I've hired a beautiful young Tibetan ex-monk to clean the house next week.  (Not inventing this, I swear.)  I'll be durned if I waste whatever energy is being restored to me on mildew removal.  Imagine that on a headstone--"Her shower stall was immaculate.  Rest in antiseptic peace."   Naw, I'm setting my sights a little higher than that!

As for your domestic routine on tx, sounds exactly like small mammal behavior.  Maybe there are advantages to adopting gerbil mind (and travel routes), if only temporarily? :)   I've been trying hard to find some Buddhist advantage in the simplification and stripping down that happens while on treatment.   But yes, it's terribly humbling.   No way could I write well or conduct research or grade papers or deliver a lecture or any of that while under the influence.   Neuro-linguistic meltdown.   And so, my dear, just how much longer do you want to carry on with this?  Do you NEED to carry on with this?

[Tallblonde]

Cuteus wrote above:  "I have been paying attention to how people write and I see it a lot with the tx, but also with folks just with hep c status and no tx. or maybe is just aging? grrr"


I'm glad you brought this up.  This is one of the most frustrating "symptoms" I have.  I have an undergraduate and graduate degree in journalism (I write for a business journal), yet you'd never know it from my spelling and grammar.  Actually, it's more of a typing thing.  I think I'm typing correctly, but after I re-read what I wrote (usually long after I've hit the send button), I'm horrified.  I honestly believe this is HCV-related. My husband is the same age as me and he doesn't have this problem.

Susan

[Tallblonde]

I wanted to add my good wishes to all the others you've received from your friends here this week.  Congratulations on finishing treatment, Califia.  You've been a breath of fresh air on this board and you really raised the bar for intelligent and civil discussion.  I hope you won't be a stranger now that you're done doing battle with the dragon.

Take care,
Susan

[zipzapped]

Woke up at 5:30 this morning and began reading all the messages from last week. These postings really are a gift.

I have been measuring the pros/cons of working, starting treatment for a second time and my thinking seems to be in black and white on this subject of health and work.  Sooner or later you do begin cheating yourself or your job or both.  When I was diagnosed in Dec of 2003, biopsy revealed chirossis.  So this has been a part of my life for some 30 to 35 years.  I had been working in a very busy stressful office, I thought I was thriving on the fast pace and mental challenge untill I started to fall apart.  I began by not speaking what I was thinking.  Co-Workers looked at me in wonder or just puzzled.  Than I began to realize that I was just not speaking the words I thought I was.  Than there is the challenge of learning new processes.  Well in a fast paced environment where every thing counts this is just not acceptable.  The first round of therapy seemed to slow me down and now the speach is cleared up, however other language and learning skills are just dull.

Than last week, I found myself sleeping a lot.  Drive 45 min to work, take an hour nap before going into the office.  Getting up in the morning and needing 2 naps before 1pm.  Going home and naping.  Inbetween I have met with a new Nurse regarding treatment, when I asked her about working while on therapy her response was, if you are too sick to work, you are too sick for therapy.  Ouch, that hurt  This woman,who by the way also told me it was pointless to need to know what my viral load was if I was not on treatment. (Another story there) So what is the pivital moment, what are the key indicators in the lab work, that tell you you need to step back from your schedule and focus.  I keep thinking the doctors know, they keep telling me I am fine and I feel like a putz because I know I can not keep this schedule up.

This forum has also brought up the over 54 and menopause issues.(i am 56)  Do any of you in this catagaory find using hormone replacements any help?  

My liver has not started to decompensate (fail)the doctors tell me I should be fine, I just do not feel fine.  I am applying for LTD Long term disability thru our insurance at work, starting with a reduced workschedule.

DO any of you who have had HEC-c for many years find you are always thinking that the doctors still to not see all of the indicators?  That they must still be missing something and do you sometimes feel that the vail between compensated and decompensated liver function is much thinner that we are being told.  (Ya that means I have a hard time trusting the medical community)  Just wondering if any of the rest of you carry this uneasy feeling around?

Zip

[zipzapped]

The story I told was the second opinion.  Just felt I needed to try another group as this doctor has a very good reputation.  Not so for Nurse Nasty.  The nurse is this case appears to run the show so, if I do not feel warm and fuzzy with her now, the future does not look so good either.  I may just go back to the old doctor with the nice nurse.

I need to be working on my weight and dropping a few pounds.  The doctors would feel much better about treatment.  Some things as not as easy as they sound.  It is like trying to stop smoking, never started smoking so do not have to quit. However food is another story.  It has been the source of instant energy boots at work for a long time (100lbs) now I need to be listing carefully to signals and trying other things to get the boost.  Naps, walks, water, vitamins.  This has been my struggle.  That amd having a desk next to the coffee bar at work, where all the birthday and special occasion food gets left.

[cuteus]

I would not trust what that nurse or any dr says about hep c. And, no one knows  more about YOUR body than you do. You are right in believing that your body might be reacting to the damage already.
I can't believe she said that to you! If you are already too sick to work, doing tx can't be worse and the chance of getting rid of the bug and doing so has to help the liver somewhat, at the very least. Get a new hepatologist and new opinion.
best to you

[cuteus]

you too???? My desk is in the fridge/food table area, when we celebrate birthdays, the food is on the table all day! but some of it find its way to my nearby desk, somehow.  I did not loose too much wt on tx, I ate everything on sight and did not gain either, it was Heaven... or close to it...then tx ended and 3 months later I was struggling with about 10 lbs...grrr. ( 9mo later still am zipping the 10lbs within my jeans.  You definetely have to gain control over it before tx.

and do go back to the nicer dr or find #3, I finished my tx with #3 almost went to 4, for tx extension but did not have to after all.
gl to you

[Healed24]

Hello to everyone. I am new to this board so I hope that someone can offer me some advice. I am currently on week 17/48 of treatment. The side effects I am expericing from tx are nausea, vomiting, and severe stomach gas (is that normal?). The side effects aren't everyday. I've been off of work since tx began and I am considering starting Law School. Any advice onto whether I should brave it and start school or wait until tx ends?
Thanks in advance for all your help.

[cuteus]

the tummy woes are most likely riba related. After I finished full dose tx, I continued two more wks on shots and no riba, and my tummy felt much better, even with the hiatal hernia. It does get better after Tx. Like you said, it is not every day.
As for law school, WOW! How is your memory? mine was pretty bad during tx.