I don't know how you all do it

[brown_eyed_grl]

I have two months to go b4 I start tx and I'm already in panic hell. My anxiety level is so high, I'm already feeling shorness of breath and tightness in my chest.

Maybe my feelings are completely over the top. The fears of not being able to take care of my family and maintain my business is making this process probably so much worse for me and my recovery.

If there is anyone out there who has been where I am, I would appreciate any pearls of wisdom. I will hold on to them...I promise!

Freaking out in L.A. :(
Julia

[jmjm530]

It's normal. I started to develop noticeable reflux around two weeks before treatment. Maybe a coincidence but I doubt it. Regarding, family and business -- best thing is to sit down work out a plan "B" if you aren't able to care for them or work full-time. Most here are able to maintain both responsiblities, but some are not. Being prepared for both scenarios, with a back up plan in place, should go along way in relieving some of those anxieties.

All the best,

-- Jim

[Cindy10]

I have to agree with Jim, get a back up plan.
I too was stressed with visions of me trying to get out bed with fever and vomiting etc. Thats normal to wonder but really for me the anticipation was far worse then when I started tx. When I did start I was relieved, not because i didn't feel anything because I did, but it was not what I had feared. I function everyday, some better than others. I do admit I am one of the lucky ones, I feel pretty good except fatigue (no rescue drugs yet week 20).

Now in interest of full disclosure I am not working, got laid off with severence pkg and made it easy to start.
But I get up early everyday, do all my housework, wash my floors weekly, go out everyday, errands, appts. lunches with family and freinds, walk etc. Do I have days I stay in and take in easy, yes Saturdays and then I'm fine.  I have even got some major projects done.

You might be one of the lucky ones as well, try not to worry yourself sick before you even start ;-)!

I wish you luck!

[snowbyrd]

I totally agree with Jim...you must plan and  prepare for this. My social worker at the clinic said that people who plan out what they will do and have alternative in place seem to do much better emotionally. That said...I had alot of fears about my kids seeing me sick and me not being able to care for them. I have had some pretty bad side effects and I'm not able to work, but we sat the family down and explained that we needed support at this time and they all have been amazing. I'm now 8 weeks into treatment and have been undetectable since week 4. It trully is worth it. Stick around here and talk to people, it has helped me so much. You can do this. You are not alone and what you are feeling is normal fear of the unknown. Hang in there.

[welderman]

I to have the same feeling's with anxiety. I never had that before but seems to mess with me a little now. The last thing I wanted to do was start treatment when I feel good and my Bus. is doing well. Good luk in your teatment

Lynn

[Bill1954]

Hi Julia;

Pearls of wisdom, huh? LOL, Ok, here goes-- but you asked for it....

Simply put, you'll get used to this, eventually adapt, and life goes on. You're experiencing a very normal reaction to diagnosis of a possibly long-term, potentially life threatening illness. I think most, if not all of us have gone through this to one extent or another.

I don't intend to begin a religious debate, nor will I participate in one; but here's what I found out. As an old drunk and addict, I don't have any religious or spiritual background. I don't care to explore that area, if anyone is wondering. HOWEVER, a while back I did realize that some things are beyond my control. Call it whatever you want, but I came to a point where I had to relinquish control. Some folks might call this "giving it over to God". Call it what you want, I can't personally get my head around that concept, though. I DO see the wisdom, however, in concentrating my thoughts and efforts on the things in life that I'm able to influence in a positive way, rather than expending energy on issues that I really can't do anything about.

Sure, this HCV has profoundly changed my life; I've lost my business, gone broke, a whole bunch of other negative things that I can't even think of now. On the flip side, I've been taught lessons in humility that I sorely needed. Patience, tolerance and empathy for others are just the beginning. I've made major life-style changes to accommodate this disease, most of them for the better. I've quit smoking and drinking, begun a fitness program that includes exercise and diet modification, lost weight, etc.

I've re-acquainted myself with my adult children; I now take an active roll as a grandparent. I'm taking classes at the local community college, and actually enjoying life for once. I could go on and on (I guess I have :-)), but I think I've made my point....

My experience with HCV over the last few years has shown me that although there are certainly negative issues attached; so many positive changes have occurred that sometimes I wonder if I'm not a better person in the long run. I hope you can enjoy some of the same lessons that I have learned as well.

In summary, take a deep breath; you'll be OK! Figure out what's really important to you, most of the small stuff will eventually work itself out. I guess I'm done with my rant now, and I hope you can draw from this a little.

Take real good care, and don't forget to live large-- hug your kids if you got 'em,

Bill

[Kalio1]

If it gets to be too much dealing with life or work or side effects, you can always stop treating and reaccess the situation.

The worry is not good for you. As hard as treatment is at times, it was far worse for me PRIOR to starting because there are so many unknowns. But remember, YOU are in control of how it comes down.
You do have the option of trying treatment out and if it proves to be too much you can stop and deal with it when your life situation better allows it.

My doctor telling me this somehow made it less worrisome, maybe that will help you.

It is a slow moving disease. If I had it to do again, I'd start treating and test at 4 weeks and reaccess it at that time. If you are UND at that time, your chance of it working increase quite a bit. If you are not clear then, then you can rethink treating, dosages, time lines, etc. to best maximize your success.
Try to put it out of your mind and go on with life. Many people have limited side effects and manage life, work, etc. Many don't. You have to try it and see how YOU handle it, everyone is different.

[SandyBreeze]

Julia-  Why MUST you start treatment?  What is your age?  What does your biopsy reflect?  Julia, I am a 1b with a biopsy reflecting very little damage.  I choose to wait.  I am 41 years old.  I have had this virus 20 years (possibly 23 years),  I have plans to treat in seven years and not before unless something changes drastically!!  I have some plans set in motion, that by that time I will be in such a posh place in my employment that I can afford to slack with time and effort.

How long have you lived with this virus?  If you're specialist is advising to treat without a biopsy.  Say, "No"... no forget that ... say "HELL NO!"  This is your life!  Do you have children?  How old are they?  Think about what you are doing and make your decision BASED ON THAT!  You don't have to do something just because your doctor tells you to.   I may be wasting my time and you already have had a biopsy and you are in dire need of treating immediately - within the next two months.  If THAT IS IS NOT the case, RELAX!

Good God, you've got members telling you to start treating and if it isn't what you want "awww... you can quit".  Give me a break!  Who would want to subject themselves to that??!!  (In my humble opinion, if you will)  if you're not willing to go through with dont - Don't Start!  Don't go in until you can say, I AM IN THIS FOR THE DURATION !!!

If this is not a good time in your life to start treatment and you have minimal damage, then don't treat!  Enjoy your life.  Do the things that make you content.  Surround yourself with positive people and keep physically active. (Did I say keep physically active?)  Get yourself to a stronger mental and physical state than  what you are coming across right now.  Stress and fear is screaming out in every word.   You deserve more... you do.. You Deserve More.

If you really must treat BECAUSE your damage is significant; and Hep C is affecting your life then Bite The Bullet!  You may need a psychiatrist and a live support group.  But you will - We almost always amaze ourselves.

[brown_eyed_grl]

Thank you all so much for your kind words. I've had HCV since '73. Last biopsy was in '99 and there hasn't been any changes. Just minimal imflamtion. They never wanted to treat untill now b/c I'm a 2. I know I have a good chance of clearing.

My life is great now, but this nagging disease is always w/me, That's why I'm finally going to do something about it. I don't want it to eventually get me.

I have been clean and sober since '88. I'm very healthy and evercise 3x a week. I think the fact that I'm so healthy and to compromise any of that good health is leaving me w/panic feelings. I think anyone would feel the same. I want to get on w/it already, but I have to wait till May b/c my son is getting married.

I am a very spiritual person and I do believe my higher power is there for me...but I am a worrier (it's in the genes!)

I love all of you. You help me so much!!
xoJulia.

[chellski]

so good to see you post...haven't been around for a while, but i'm now 11mo post tx and will have my 1yr pcr done (appropriately April 1 - i'll just have to tell them no jokes! ha)  I must say I enjoyed your words of wisdom, your experience summed up in a few paragraphs but it packs a whallop....great attitude, and i understand where you're coming from... glad to hear you're well...
chelley

[SandyBreeze]

I don't know how i MISSED your comments.  Very well said and moving....

Such encouraging words to anyone on any subject.  We must ACT where we can and relinquish control and accept what/where we can't.  I so enjoy reading about or meeting others, such as yourself, that actively participate in making their lives better and the lives around them better. (Fortunate grandchildren!)

I've spent some time reading here over the past two weeks and it is an amazingly diverse group.   I suppose not so amazing really, but more like our everyday life, the contacts we're constantly making.  (People even get 'stuck' here in 'yuck stuff' when they decide to mull in sticky stuff.)  Not so different than real life.

It is satisfying though, huh, the impact of a combination of positive life style change has?   Attitude, Diet and Exercise... you covered a lot of basis - all which can change one's life.

Breeze

[nygirl7]

Try and be excited like I was...I mean I couldn't WAIT to get started and was really mad when the doc put it off for two weeks cause I had to have my eye exam!

I just wanted to kick these little suckers to the CURB and couldn't wait to do so!

You might be one of the people who laugh and go oh that's all this is they made is sound so horrible!

REMEMBER: The people you read in here are generally people with TROUBLE during treatment and they come in here looking for answers.  The people who don't have any major calamity - don't even think to come in and look around because it's a NON-issue for them!

Ask your doc for Paxill or something now. Don't wait. Or all the waiting and anticipating later when you are ON treatment might drive you bonkers!

To me the waiting is the HARDEST part.

[ChrisDDD]

You sound just like me when I've been getting ready to go into treatment at various times.  I agree with everything said here, all of it.  My anticipation WAS much worse than the treatment, and I was able to do much more than I thought I'd be able to.

That said, I agree with the philosophical view of "Let it Be".  I mean I have fought and tried so hard to get well, and all three treatments I failed.  Last year I was taken off Infergen for retinal bleeding and cotton wool spots at 9 weeks, and my local doc told me he'll never give me Interferon of any kind again, ever.  I switched to a doctor a couple of hours away who is very experienced and at a large teaching hospital, and he says he will TRY to get me into VX-950, but fears Vertex will exclude me due to the retinal issue.

At times, like you, I panic!!  My body failed me, and there's nothing I can do about it!  In my darkest moments, I see the faces of my three beautiful daughters, grown now, and am not ready to leave them.  Hopefully I have many more years left yet, but I really have to acknowledge in those moments that I have NO control over this.  What will be will be.  If I get into a trial and get well, I do.  If I don't, I don't.

I've been advised not to go around red-flagging my retinal issue, but any doc is going to find out about it anyway.  And what am I?  Stupid?  I don't want to go blind!  I also had untreated high blood pressure when I had the retinal problem, and never had either problem on Peg, only Infergen.  My blood pressure is now under control with meds.

This is the way I've looked at it.  It's sort of like there's never a good time to have a baby?  I think it's sort of the same with treatment.  I put off the Infergen treatment until after I got married and started 6 weeks later, only to crash and burn anyway.  I was all stressed out about whether the Infergen/Riba would keep me from attending my youngest daughter's high school graduation.  I needn't have worried.  I got booted from treatment months before her graduation.  See what I mean?

What made me feel the best was to think of what comforted me, a backup plan, and just allow yourself to be sick, if you are, to care for yourself.  I worried about losing my job and going on disability.  Well, I didn't lose my job yet, but I am on disability.  And you know what?  It's not the end of the world.  If you're lucky enough to get into treatment, go for it, girl!  You have us to cheer you on!  Once you have your backup plan in place, I think you'll feel much better.  For your kids' sake, it's okay for you to take time for you now and get well.  It certainly has changed my daughters' perspective of me, in that they now realize Mom won't be here forever.  It's not like it's right around the corner, but it's sure made them grow up and see that I'm human, too, just like you!  Anti-anxiety pills may not be a bad idea at this point.  You'll probably wind up on them once you start treatment anyway.  I did all three times.  I hope this helps.

[Pdilly]

THe anticipation will get you more than the actual treatments and tests believe you me.   We all have been through all the process.  Really if you can calm yourself down you will be just fine.  

[Htownwife]

Hi there! The decision is so personal and there are so many factors involved.
I think you said you're a geno 2, right? Which means at least you don't have to treat as long as geno 1's.
Also, are you the sole support for your family? Do you have children other than the son who is getting married? If so, are they old enough to help you out at home?
These are the things that I would look at before deciding to treat at this time or not.
Yes, a backup plan is an excellent idea. Do you have any kind of disability insurance, or could you take some time off if necessary?

If it makes you feel any better, my husband has his own business, too,and has been able to work the whole time. This Friday he takes his 40th shot. There have been days that are tougher than others, but he has learned to pace himself and rest when necessary. I can't remember even one day that he hasn't been able to work.
Of course, everyone is not the same as far as sx's go. He has never needed Procrit or any rescue drug because his blood count, though low, has never been bad enough to need anything for it.
This is a great place to come for support...daily if need be. Don't try to treat alone. If you have family, friends,a church, etc. reach out to them.
Please keep us informed as to what you decide to do.  

[ladybug52]

Bill: What great words of wisdom! You made so many good points. I'm so glad you drop back in now and then!

Julia: I think so many people can relate to what your're going thru. I decided to treat but kept stalling. The anticipation nearly killed me. I was afraid to start tx. Everytime I felt sick, I'd think "I can't go thru tx if this is how I'll feel all the time" I was worried about losing income if I couldn't work, I was worried I'd alienate people because of the riba-rage. I was worried I'd have permanent brain defects because of the drugs.
Well, like Bill said "Simply put, you'll get used to this, eventually adapt, and life goes on."
My worst fears came true when I lost my job, not due to tx, but other circumstances. When the worst fear becomes reality, it doesn't seem as important when you're trying to get thru the tx. ALL my priorities shifted. I realized I was a work-a-holic and it wasn't rewarding like time spent with my family or working around the house. I'm working again, had a set-back financially because I was use to working at least 2 jobs and 6-7 days a week. But I'm so much happier! Get thru the wedding and see how you feel. You can always stall till you can't stand it anymore. You have friends on the forum who'll give you the push you need (like they did me!) Sorry so long...Bug

[Teufelhunden]

Well said Bill. It doesn't matter what hits you between the eyes to get your attention as long as your attention is got. I toiled over the decision for three years, drinking more beer to make the problem go away...but it never did. And as I was standing in the Dr's office 7/14/06 watching the nurse sick me for my first shot, my first thought was "is it to late to turn back"? My second thought was "what an idiot I've been the past three years"(actually the past 20 years). I have a lot of catching up to do. What a different outlook on life! I enjoy what I see now and I can actually look at myself in the mirror without feeling guilty or remorseful. Was it an "awakening"? Maybe(I know I talk to Him more).  Brown_eye_grl, you'll worry yourself silly thinking about the inevitable. Life is a journey. Good and bad. I got a feeling you're going to learn alot about yourself on this journey. I know I have on mine!  

[brown_eyed_grl]

So interesting....everything you've all said. I devour your words as if god is speaking to me LOL. The more info I get from all of you, the more I can actually 'feel' what it's like. I know I'll be tired, but thats the deal. I am not the sole bread winner, but we depend on both salaries to make it all work. Hubby and I own our own businesses, but I'm further along in mine, so I'd say we depend on my $ a bit more right now. I have an eleven yr old who depends on me for everything. This may be a good thing for him to start depending on himself more.

I'm scared....what else can I say? Though I am lucky, I found AA many yrs ago and my religion is the 12 steps. In that area I feel very blessed. With that said, I still believe in MY own personal karma. I did a stupid thing ONE time and ONE time only. Now I feel I have to pay for that awful day back in the spring of '73. I know others on this forum contracted HCV by unknown means.....and I feel HORRIBLE for them. Actually, I feel horrible for anyone who has to go through this process.

Thanks everyone for your support. I love this forum. Each and every one of you has you own private journey through tx and I am so honored you are sharing it w/me

My Dr. gave me klonopin today and I feel the stress lift....:)

xoJulia

[ladybug52]

Klonopin that is! It does help! Julia, I worried about money and now am making arrangements with creditors. I have learned a lot about finances that I didn't know till I quit making as much money. Everything is a lesson in life, what happened in '73 was part of the lesson! My  stupidity was in '71 but just lately, after someone's 'shame post', I'm starting to get a new attitude about it all. Good luck with your journey!
Bug

[ChrisDDD]

That Klonopin is good stuff!  I've been on it for years.  This disease and treatment has taught me that what I thought was the end of the world was actually far from it.  It's put so many things into perspective for me and all those I share with that I have this disease.  I'm so glad you're feeling better.  By the way, I like your screen name.  One of my favorite songs!

[brown_eyed_grl]

Aww...you guys are the best!!

It's funny, I think I can live w/the fatigue, but the insomnia is whats sending me over the edge. Laying in bed for hrs on end seems like being a prisioner in your own body...night after night, then trying to work??!!??! :(    I LOVE my sleep, but not keen on taking drugs to sleep, then wake up groggy. Do you think some of the sx and related to many of the RX's many of you take? Just a thought. Riba rage freaks me out....Deep breath Julia...deep breath...
:)

[Bill1954]

Wow, a lot of between-the-eyes honesty and wisdom shared here today. Julia, you've unwittingly opened up a really good topic: “how has HCV had a positive impact on our lives?" In re-reading this thread, I'm continually amazed at the intelligence and compassion this group of people is capable of. It reaffirms my hope in my fellow brothers and sisters; and everyone here, right down the line should pause and take a minute to reflect on what they've learned over the years. Julia, you've found a pretty cool place to hang for a while; welcome to the forum.

Take real good care,

Bill

[ladybug52]

Have you always had a problem with insomnia? You sound as if you are a high anxiety person, I know I am. I'm very hyper and ADD. I take adderall (adderrall) but it doesn't work as a stimulant for me, more of a focus and get things done feeling. I have no problem falling asleep with the Adderall (adderrall), but I have a long history of insomnia. Especially with the full moon. I know that's crazy but it's true. And the full moon is just a couple days away. Don't be afraid of riba rage! It's another lesson in patience. You can do this!

[dperry10]

This is the 2nd time around for me, I did this 14 years ago, and it came back.  But they did not have even a 5 year study on Hep C back then, so...  

Now I am at a place in my life where I am happy, and want to be around for many years, with my current relationship.  I have a good job with nice union benefits and have the perk of taking short term disability, without any hassle at all.  I started treatment Dec 22.  I am currently going to be taking shot 11.  I am genotype 1a.  with stage 2, grade 2.

I started treatment with the additude that I could do this, it was doable, not really remembering all the side effects that I had 14 years ago.  I guess I blocked that out, do remember losing alot of weight and my hair.

Up until recently, I was handling work ok, but as my HGB dropped, I got really pale and people really start to notice.  Always asking if I am feeling OK, don't look so good..   And my customers getting on my last nerve. The micromanagement really getting to me, and finding that I was on the edge of Riba Rage at work.. So now on my 3rd day of Being off...

So take it a day at a time, and sometimes an hour at a time, is how I got thru work.  

[Cindy10]

Words of Wisdom!

I agree, sometimes what we think is such a devastating
situation sometimes changes our whole outlook on life and the little things in a positive way.

Its like they say "sometimes good things come from bad things"!  Its a higher power at work ;-)

Good topic, I enjoyed it!  

[Kalio1]

BEG, when I mention the option of starting treatment and stopping if it becomes too overwhelming in your life and is threatening your livlihood, obviously I didn't mean to go at it half way or not wholeheartedly, but just that you know that IS an option for you should things get so bad you have to consider it. But that isn't going to happen! You will do great. It's the pre treatment worry that drives everyone crazy. The waiting is the hardest part. Stopping treatment was an option given to me by the doctor. He knew I would give it my all but he also knew that realities like paying the bills and eating were all too real. So far I've been on this stuff over a year and a half, so far I have not exercised that option.

Bill, as always great to see you. I so enjoyed your post. Bet it's fun with those grandkids! I don't have any yet! poor me.

You sound so good, hard to fathom you are treating!

take care buddy.

[powerbuilt]

Hi All    Need some advise     I got in a big fight with my wife today,told her I was getting off these meds,she talk me in to not quitting, I have been flying of the handle very easily lately, told my nurse last week about it, got better for a few days now I am back at it again....   Could not get a hold of anybody today,will be doing shot #7 tonight, I am worried about my temper flaring so easily lately....  I have another 4 and one half months to go on these meds????