Anyone else feel like I do?

[want2live]

4/48.
I haven't been able to work due to fatigue and various other sides, now my co-workers look at me like I am copping out and taking extra time off from work because I have an excuse.
I am worried that I will lose my job. I am worried that I will lose my insurance and then my treatments. I am worried that I don't even know who I am supposed to be lately.
I am worried that this treatment won't work. I can't sleep without Ambien. I am worried that my wife will never see me the same again as I was before treatment.
I am worried that I will be unable to work in my profession again. I am worried that I will lose my life insurance and never be able to get more. I am worried that the insurance company will find something else to not pay for.
I am worried that I will die poor and alone.
I am wondering if I would have been better off not caring enough about my self to treat. I am worried that I will never feel the same again.
I am worried that these things are defeating my treatment.

And PLEASE, if you don't feel any of these things, I am happy for you.
But don't add to my misery and tell me how great you are doing.

[Revenire]

<a href="http://www.ssa.gov/pubs/10153.html">What You Need To Know When You Get Disability Benefits</a>

<a href="http://cms.hhs.gov/hipaa/online/default.asp">Health Insurance Portability and Accountability Act (HIPAA)</a>

<a href="http://www.hcvadvocate.org/">HCV Advocate</a>

<a href="http://www.eeoc.gov/">Equal Employment Opportunity Commission</a>

<a href="http://www.dol.gov/esa/regs/statutes/whd/fmla.htm">Family and Medical Leave Act</a>

<a href="http://www.usdoj.gov/crt/ada/adahom1.htm">Americans with Disabilities Act</a>

<a href="http://www.hep-c-alert.org/links/ada1.html">another ADA site - specific to HCV</a>

[honey1616]

I know...As I read all these posts my eyes are all teary because all of us know all these feelings that everyone and want2live has posted.  And it really does make you feel lucky if you are handed this...that we all have this board to vent, scream & cry like a baby. And then about the time I'm really teary I come to a post...Befud or Ring hahahahaha   2 WORDS...COVER STICK and then you are thinking huh???  And then bursting out of course because only those 2 can come up with some of the most bizarre situations!!

[ringading]

ha ha ha yah well.....GOD FORBID i be the one to stand in the way of ANYONES COFFE/LATTE/SMOKES....no ooo not me.....and i have my 'family tree'  nurse RATCHETT is no relation...!!!! as a matter of fact.....there is debate about wether or not she is even HUMAN....ALIEN ALIEN!!!!!....no seriously.... drink water...AFTER your morning coffeesssssssss and you may...find that the circles aren't as bad...but then again....you ARE in the process of 'toxifing' yourself, so maybe the circles just have to be tolerated darlin....2 words....COVER-STICK..

[jg2001]

Good morning!  Looks as though ya pulled through a day of hell!  I can't imagine how scary that was for you.  What a BUNCH OF BEAUTIFUL people there are here!  I was reading the posts 2 days ago at work and laughed out loud a couple of times!  And then yesterday, the transformation to care and concern. Incredible group of people.  Just incredible.  I actually thought of telling you to go to lunch and send me the bill, but I thought that might be too imposing.  You take care and GOOD MORNING, again!

Jamie

[ringading]

OH WOW....SORRY...just realised that i FORGOT to respond, when i thought of it, as i was sad and moved by your plight yesterday and didn't know what to express, other than feeling powerless, but we are not powerless here....duh.....i want you to know that i wept reading your post this morning and all the wonderful, moving, thoughtful replies to you from everyone.....as well as yours to all....there is such a moving , touching, sense of community here that i have not seen anywhere.....we are all connected...everyone of us.....and when one is in trouble and grief....we all are!!!!
what a priveldge to have this special place and all of you who make it that way....i am so glad today is a clearer one for you love!!
kimmy

[Fubarcat]

Based on Want2Live's initial post, I decided this morning - screw it.  I'm telling my office administrator that I cannot possibly keep up the work load that I have for the past 11 years and that I was scared I was going to lose my job and then have no insurance.  To my surprise, his daughter has Hep C and he was totally sympathetic to me and said not to worry, we will deal with whatever comes up!  This Board is great because it gave me the strength to do something that I had been worrying about and stressing about for the past 5 weeks.  Thanks everybody for your words of encouragement - although they were not directed to me, they certainly helped me.

Want2Live - I am so happy you are seeing the light today.  I was very concerned about you yesterday and I'm glad to see that you made it through the darkness to come out on the other side with a plan and some goals set for yourself.  Hang in there buddy!  Your wife will help you deal with all this and be proud that you are doing something to help yourself get healthy.  Take care.

[honey1616]

Oh wow...I'm so glad to get up this morning and tune into hepper land haha and see your post!  Already I feel great tody!  You got it going now...Sounds like you are making some changes and accepting what we can't change.  This board is something else..it just amazes me the people that flock to you in time of need here and revenire just looking up those links like crazy for everyone!  You guys are the greatest and no wonder we are all hooked to this board LOL

[ringading]

hey vick....while your off makin coffee.....just noticed your comment on dark circles under your eyes...contrary to what most think, it is not a symptom of lack of sleep, but a resevoir, sort of for toxins in our bodies and an indicator that there is a build up of toxins ....maybe....you might INCREASE water intake.....and NO VICKI......the water in COFFEE doesn't count!!!!
kimmy

[audreywald]

I take 1 or 2 Nyquil caps for sleep (2 on shot day) and mostly sleep ok. Very little residual the next day, no script needed, ok by Hep doc, and most nights I sleep decently.

[want2live]

Now that I have had some time to rest I would like to respond to all of you kind souls who reached out to me in my time of need.

lackalustre, thank you for your prayer, it warmed my heart, and was the first indication that I was going to be OK and loved by people who *unfortunately* know exactly what this is like.

honey, big hugs to you too. I could not imagine if my wife had this too. Give your hubby a hug. My wife is extremely supportive, and I feel very sorry for her that I have to put her through this. I love her so much and hate to see her suffer.
I will take your advice about good and bad days. The change I need to make is to take medical leave today when I see the doc, and not worry a bit about the silly work, it really is not important. That way I just won't have to worry about it anymore.
And if they let me go, fine. I'll get another job, hopefully with a company that does some social good. Life is short and we should all help one another. I am going to get some new AD's today. I know that it would be better if I didn't take anything, but it can't be good for me to feel like I did yesterday.

jamit_a, I hope she came back, I can't imagine what that must have been like, I am sorry that it came to that. Everyone says here that the meds will take time to get out of your system - months, keep flushing! Thank you for your prayer, I said one for you too.

fubarcat, I am sorry to hear that you were breaking down too. Was it at all brought on by some event? Thank you for your wish of peace for me and for your encouraging, kind words.

jg2001, you are of great help to me. To show you care to a complete stranger is a feat reserved for only those with a gift of riches beyond measure. If I could buy you a big fat greek salad and a nice bowl of soup I sure would! Thank you.

revenire, I am sorry to hear that you have experienced the same **** at work as I have. It does make me sick, they just don't understand. Only 20 days, wow. You ARE a trooper! Thanks for the links, all the info, and your encouragement. You are the man!
I have some Xanax, but I try very hard not to take it. I could easily take some very day, but I know that is not how I am supposed to use it. I should have gobbled some last night, but maybe I needed to feel that way to make a positive change for myself.

donl, I am very much among friends, thank you. I am sorry to hear of your business, I hope that you can get some assistance. Hopefully this will be one of those success stories where right after a partner leaves the company takes off big time! I am going to get a new AD, take medical leave, and finally relax without that damn monkey on my back. And yes, I have seen the look in some people's eyes when they find out about my HCV, to me it opens the person up like a book to me. I can see where they REALLY stand in about two seconds. Of course for me it is not a client relationship, so that is different. But I know what you are talking about. Thanks so much for your encouragement and support, I'll be here for you too if you need me.

wackyKilkins, sounds like we are on the same schedule. I decided to take treatment because of people here, so we have alot in common. And I'm with you, to hell with the co-workers. And that is hard for me, as I was part of a very tight team that I built from the ground up. I got every one of them their job. Every one's salary was almost doubled because of me. I ran interference for them so they could concentrate on technical stuff and we could all get the job done, and this is the thanks I get. Short memories. I will take your's and other's advice, rest, relax, rest, relax, heal, feel and get better. I am in for lots of do nothing, thank you. God's blessings on you Kathe.

downthisroad, you are right. I am going out on leave. The hell with the work, this is my chance to get better. The last time I checked there are lots of want-ads for new jobs, not too many for new livers! I am 1a, you are right. I can't wait to add the "0" to my shot count, like you. Thanks for granting "worry permission", I'll try not to abuse it! Thanks for your compassion and kindness.  xoxoxo

befuddledbedarned, your words DO help - alot. I was fogetting about all the things I have to be thankful for. The link was nice. I will take you advice and keep focused on the positive, I really do have a second chance, sometimes, as you know it is hard to remember that sometimes. You hang in there too, thank you.

blueskies, I remember that post, and it is right on. It was my prior experience with another Dr., in combination with my work atmosphere that prevented me from just taking the time off. I just thought everyone would think (as it turns out I would have been right) that I WANTED to take time off.
Now, they can all get screwed. I am taking the time off, period. I am not going to go through what I did yesterday ever again. For anyone. For any price. I am so happy for you that you are clear. I want to find out what that is like. Thank you so much for reaching out to me, you are an angel.

dh bill, You are exactly right, I did need to buck-up and count my blessings, we all have much to be thankful for - even now -with this. Don't feel bad for bitching, look at the wonderful warm support that everyone poured over me, I could have just as easily stayed on the couch and cried all night. You ***** here whenever you feel the need to mister! Thank you, take care.

audreywald, I have very much taken all this to heart, and yes, this is happening to me. I am going to get help. I don't want to feel this way anymore. And you are right, I am not this way, this isn't me. You take care and thank you so much.

strongforhim, been married for about 20 years, I am going to take your advice and have my wife come here, good idea. And I won't give up, I have some great support here. You keep being the glue, and thanks for helping mine. Thank you Sharon.

mttam30, I have set up my worry time like you do. It's not stupid and helps me alot. Otherwise I will do my worrying all damn day, now it has limits. Thank you for thinking of me and your kindness.

PeeBee, Yes, it has changed our lives alright, hasn't it? Hopefully for the better someday, you keep on fighting and I will too, deal?

chevygal55, You're only a couple behind me, I spend a bit of time with my teeth clenched as well. I must say that the speeder effect has gotten better for me, hang in there, and thank you.

You guys made such a HUGE difference to me, thank you again, love you guys!

[natbil]

I know exactly how you feel. I was going through the same few days before christmas, I started to have all your worries and I couldn

[mttam30]

your post brought tears to my eyes. being a champion worrier myself, i know it can be crazymaking to have so many things to worry about all at the same time. sometimes i use a little trick that goes like this. set aside a time of day that you will allow yourself to worry all you want. say, from five p.m. to five-thirty p.m. then, everytime a worry pops into your mind, say, "no, you can't worry about that now, but you can at five."  i call it "scarlet o'hara therapy."  i find that when five o'clock comes around, sometimes i worry, sometimes i don't feel like worrying and sometimes i use the time to write down plans for dealing with each (or one) concern. at any rate, i didn't spend the whole day worrying. i hope this doesn't sound stupid and can help a little. also, know that you are in our hearts and minds.

[audreywald]

Please please take what the people are telling you here to heart. It is so clear to me that the most dangerous sides are the mental/emotional ones. Being a not too brave person, I asked my doc and my pegintron be in charge nurse, has anyone died from the tx?  BOTH answered, only from suicide.

This is not to scare you or anyone. These meds wreak havoc on our minds as well as our bodies. It has nothing to do with us as people, it is a side effect of the tx - it is a physical side effect, these drugs affect the seratonin in our brains and we may find ourselves having real emotional troubles that we never had before.

It sounds so much like this is happening to you. Some sides are unavoidable, but I think that this is a side that can be minimized at the least. You do not have to suffer this much. Please seek help from a doc or a shrink. My liver doc is making me see my shrink every 2 months. I am on the max dose of Zoloft, much more than my normal dose. And I still find myself having a sort fuse, I told my insurance company that we were going to sue them for not letting us use the pharmacy we have been using.

(they warned me that the conversation was being recorded, I told them good, they can play it at the hearing after I am dead)

This is not how I usually am. And I bet this is not how you are normally either.

So, please get the help you deserve. This tx is rough enough without severe depression and anxiety making it worse!!

[DownThisRoad]

Lori (blueskies) has a great idea for you if you can go out on a disability. You may need to just have this time to yourself and you know what, **** out on everyone at work. If they don't like it, well that is just how your situation is right now.  AND you don't owe an apology to anyone at work or anyone else for that matter.  You actually owe yourself a hug hug and pat on the back for starting your treatment and treating you disease.  That is exactly what you owe yourself.

These worries that you are having are all so normal for people like us who are treating scary illnesses.  Some worry more than others.  Some worry more in the beginning of the treatment or in the beginning when we find out that we have hepC.  Some worry more towards the end of treatment.  I myself, have actually worried the whole way through, 40/48 and I knew a couple of years before I started my treatment that I have hepatitis C.  I've been able to supress my feeling somewhat and not let the worry take over my every day and every minute.

You can worry, so go ahead and worry.  It is normal.  Just put the worry in its place and don't woory so much.  Save a little worry for the next day.

Hey just think when you can add a big 0 to that week 4  = 40. (are you genotype 1 and treating for 48 weeks?)  Well, I'm that lucky 1a too and will have to do 48 weeks of treatment meds and then look at an extension past my 48 weeks of about 6 - 8 week.  Oh my GOD, now I'm starting to worry!!!

Hang in there!  You'll be fine.

[Revenire]

http://www.usdoj.gov/crt/ada/adahom1.htm

http://www.google.com/search?sourceid=navclient&ie=UTF-8&oe=UTF-8&q=fmla

http://www.patientsarepowerful.org/


TRY THESE AND GIVE THEM HELL!

[Revenire]

I will post some more later, probably Thursday. I will try to dig up some advocacy links etc. My company makes people get FMLA for one day out with the flu! That just ups the costs of health care for everyone!

[want2live]

I cried when I read your posts. In fact I am still crying.
Thank you everyone from the bottom of my heart for your kind compassionate words.

I have an FMLA in place at work, but I didn't want to come right out and ask the Dr. to just let me have time off. I thought that would give him the impression that I WANT this time off.
As it stands right now I have to call in every day and then let the Dr.'s office know so they can update my chart.
Not the worst, but not very restful either.

And I still worry about my job anyway, that is one cutthroat company I work for. I guess if it sucks that bad I should not worry about it and get another job after all this.

Rev, can you please post the link for the ADA/liver stuff?

Again, everyone, thank you so much.

[strongforhim]

First of all want2, how long have you been married? Second, my husband is coming up on 14/48, geno 1. He isn't the easiest person to get along with these days, but I love him and would never give up on this. I do not post here much but come here daily. Does your wife come here to read the postings? If not, maybe she should. It has helped me tremendously with dealing with the sx and the tx. When I do post/vent, so many wonderful people make me feel like I am the glue (at the moment) in this family and it really keeps me going. Don't you dare give up. Show your wife this web site. Let her in on some of the awful secrets that you have to deal with on a daily basis. I want to thank all of you brave, wonderful people (who keep me going). God Bless.


sharon

[honey1616]

Scott, do you take the xanax daily or just as needed?  Also does it make you sleepy at all?  I have had 1 and that was the day the drs office called and told me I had hep c.  That day I fell apart and they called it in for me and I do remember after it took effect...I just didn't care haha  I haven't taken another since but of course have not had a day that I was that anxious.

[Revenire]

I take Xanax as needed and recently it has been daily. My nurse suggested Lexepro but I didn't want to use a SSRI so, after talking with the doctor, I opted for Xanax. It calms the anxiety right away.

To me, whatever gets each of us through this tx ...

[harley dude]

Congrtas on finishing tx, If you don't mind me asking, what geno type were you and what was your liver condition in. The reason I'm asking I was geno 2b and was suppose to do 24 but since my liver was stage 3 fibrosis my doc talked me into doing a full 48 weeks, He said alot of GI's are doing the full year on 2's and 3's when there liver is stage 3 fibrosis or higher, Good luck to you-- HD

[WackyKilkins]

The answer to your question is "YES" we feel like you do.  We all have the same worries - some just more than others.  I am 5/48 this Friday.  I actually quit taking my meds after 3 days because I felt so bad.  I was ready to die instead of feeling sooo bad.  I kept wondering why I was such a wimp.  I asked the people here how they did it........the response was great. Because of the people here I started up again.  I have bad days but I have tolerable days.  I'm lucky because I sit when I work.  Saturdays and Sundays are days of doing NOTHING.  Mondays I pray that I will make it through work, if not, I GO HOME.  Starting Tuesday I'm usually tolerable.  The hell with what your co-workers think.  Talk to your doctor.  Get some Lexapro for depression if needed, drink LOTS of water and eat several small meals and get lots of rest, rest and more rest.  Don't overdo it.  The more I "do nothing", the better I feel. The world can just wait while you/we/I get better!!!  God bless you. Kathe

[DonL]

Just to be clear. When I said it gets easier, I don't necessarily mean the sides go away. They seem to come and go and surprises lurk everywhere. It is just that, for me, it seems easier to deal with them as they become a part of "this is how I feel." When I have a good day, it is still sides-y but it's just that, relatively speaking, it's not too bad.

[Revenire]

I forgot to add: The SAME things going through your mind regarding your career, your life after tx, etc are all things I feel and have felt ever since I found out I had HCV. The feelings were amplified after I started tx. It is the medications AND the fact we have this damned disease.

FMLA is a RIGHT and can't be denied if your company has 50 or more employees. If we have enough liver damage we are also covered by the ADA and I can post some helpful links if you need them ... let me know.

Ask your doctor about Xanax -- it works fast.