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Avatar universal

Impact of disease on daughter

Can you tell I am getting close to seeing my doc about treatment?  I read all the posts but don't often respond since I feel like I am still learning so much. Thanks to all of you.

I have been on medical leave from work since Oct 6 due to sx including extreme fatigue, muscle, soft tissue pain, headaches, low grade fever everyday. I go to doc on Monday and will discuss how to continue my medical leave while on tx.  This will be my 2nd visit with him and I really don't know how he will respond.

So I talked to my 11 year old daughter last night (I'm a single mom/dad is not available to help out day-to-day)about the possiblilty that I might have to go back to work either part-time of full-time.(Remember I have been dealing with these sx for 2 yrs - took medical leave last year (April - June and back slowly from parttime to fulltime in November).  

My daughter immediately started crying and said "No, Mommy!  You will be too tired like you were before and we will have to get our dinner from the restaurant or have hot dogs like before.  And you won't be able to do things with me."  It was gut wrenching for me.  I finally got her calmed down and told her we had been going through this for two years and now there is a good possibility that I can get well for good.  I really had to give her a pep talk about how we can do this together. It just seems so unfair that she feels so burdened by this. She fell asleep curled up in my lap. I was OK last nite but there are times when I can't summon up the energy for that caring, supportive mom.  It just sucks sometimes.
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Avatar universal
Children are resilient.  They are often stronger than their parents.  It is good she was open about her feelings with you and I'm sure you guys will find a way through this together.
Helpful - 0
Avatar universal
Thanks to everyone for your supportive comments - having children really adds an additional challenge to treating this virus!

moveabove - Thanks you so much for your beautiful sentiment.  It is a challenge in the best of circumstances to be a single mom but we are tough.  I am thankful that my ex is good about paying child support even though he cannot help with the day-to-day.  He lives about an hour away and is self-employed so it is difficult.  He does have my daughter every other weekend which gives me some time to regroup.  Yes, it is so hard to see the disapointment on their faces when you have to say "I just can't".  Hopefully when we come out on the other side this will all become a faded memory with time.

miss moneypenny - Gosh, I think that would be a great idea having our two girls correspond through email.  Check with your daughter and I will check with mine and if they agree we can work it out.

kalio1 - Yes, it is hard when your child moves from the stage of "innocence" and starts to realize how hard life can be.  My daughter if gifted and by next year will surely be smarter than me (she has dropped all the "kiddie shows" and spends her time now watching only the Discovery Channel and the History Channel or on the Internet to learn about things she has questions about and reads books about many issues that have occurred in history = both good and bad).  She is very interested in current events, asks a TON of life questions and is trying to make sense of the world.  So young to be wanting to know so much.  Her intelligence exceeds her maturity level at times and she gets very frustrated.  I am just going to have to dig deep for my courage and strength to help her through this so she comes out the other side with me as a strong and positive person!
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Avatar universal
You did the right thing on all fronts girl.  People who think they can "hide" things from their kids are NUTS.  Our kids know us inside and out and I really believe kids are hyper sensitive to all of our emotions.

I'm in the same boat as you (single mom of 2, 16 & 18 now) no dad around at ALL to help any longer (financially or physically). Good riddance to bad rubbish!  ;)

I really think you did 100% the right thing talking to her and reassuring her that this is a good move! Keep telling her how this is going to make you better for good.  Two years ago she was only 9 - a few years is a BIG difference mentally at that age and she just might be scared but handle it much better now.

You can use this time to bond - she can be your little helper and help you do dinner and such things. You know play the "big girl" card.  It would help both you and her probably.

Boy I'm rambling.  I wish I had the words to make it easier for your daughter but I don't. Remember though as much as you love her it's in her best interest for you to take care of this - and as the adult you make the best decision you can and then you stick with it regardless of what a "child" thinks they need.  What she really needs is a healthy mommy to be here for a long long long time - more than anything.

My kids have often been SO bratty but during this treatment time I have to tell you - the SHOCK at how my daughter has come through and how supportive she has been is unbelievable.  I would NEVER have thought either she or my son could come through like this but even just giving me an extra hug - an extra kiss on days when it's hard --------- wow. THAT is miracle medicine and you have access to it too!

All the best to you.  
Debby
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Avatar universal
Since I was dx with Fibromyalgia, I had been on Lortab for almost 2 years to enable me to work.  When I found out I had Hep C - I detoxed myself from them immediately.  I have found that after being out of work for 6 weeks that the Lortab was playing havoc with my liver since I am feeling much better.  I think I could swing working half days, 4 days a week, taking off all day Friday so I can do my injections on Thursday night to give me some time to recover.  I know everyone responds differently to sx - maybe I will be one of the lucky ones and I can continue to work.  Anyway that is what I am going to propose.  I work for the City where I live and they had gotten kind of tired of my health issues but now that I have a "real dx" and they see that there may be an end point I believe they have become more sensitive to my issue.  Believe me, I was getting tired of my health issues before I learned I have HCV.  Sometimes I felt like I was going crazy - I always felt like something else was going on with my body.
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154927 tn?1205242851
I hope that you have all your ducks in a row regarding FMLA..that'll cover you.

I am scheduled to work Mon-Thurs 7am-2 pm on Mondays-Thursdays. I take my shot Thurs afternoons & then have Fri-Sun to rest.
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Avatar universal
Thanks to both of you for your support!  Kalio1 - you are so right - I think this will help my daughter learn to take on challenges of life.  Before I learned I had HCV I felt like I was in a vacuum of symptoms that would never go away.  I think that was really hard on my daughter - never seeing an end.  But now - going through treatment I think she will definetly learn a life lesson in coping and making it to a goal.

NYgirl -  you are so right.  I also talked to her last night about being in this together and we did discuss her helping me with things like dinner, etc.  She is at the age where she WANTS to accomplish things and she loves to cook so I told her she might learn to cook lots of new things.  I told her I knew she was capable of doing a lot.  She seemed happy about that.  I also have an adult son who is willing to help with whatever I need however his life is pretty full right now - he and his wife have a 2 year old and 1 month old so I have to keep that in consideration.  One good thing about that is seeing my grandchildren cheer me up no matter how bad I'm feeling!  They live about 15 minutes away so I try to see them often.
Helpful - 0
Avatar universal
Yes - my FMLA is in order.  One of the reasons I want to try to work part-time is to stretch out my FMLA and my short term disability which may get me all the way through treatment.  Even if my FMLA runs out if I am still working even part-time under my doctors care my job is still protected.  I just have to make sure I can perform to the standard set by my boss, which is a little worrisome.  But like I said before, I think my boss is a little more sensitive now, knowing we may have resolution to this illness.  I am 51 and when I took this job I wanted it to be my last job so I could retire with a decent pension. So I am going to try my best!!

Linda
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Avatar universal
I have my 2 boys from friday till monday. I can't imagine how some of you woman have done things like tx with you being the only parent.
I was able to gather up the mental and physical stregth to just get by on the weekends for kids. I feel very sad hearing about other fathers who do not give.
  I told my kids from the beginning about the tx and that I may get off, and by did I do off the track. They have got to the point where they don't really want to hear me say again "sorry boy's, it's the medication"
  And to think that some of you woman also need to think about NEEDING to go to work.
  I want to send you money, I want to make your kids smile.
I will think of you and send you my best
Helpful - 0
166496 tn?1236182312
Sometimes you feel like you are the only one in the world with certain circumstances and then someone else comes along with the same!

I also have an 11 year old (son).  Single Mom/Dad, dad only sees every other weekend.  He is my only child.  

I am currently contemplating treatment and am goin thru the motions, BX, bloodwork, ultrasound and awaiting dr appt.  I am 1a and have had bx several years ago.  chose not to treat then due to sides.

My son understands that I have something wrong with me but am not sure he totally does.  I try to do my best at explaining and explaining the possibilities of tx sides.  He said to me, "Would you rather be sick the rest of your life or just sick for a little while and have a chance of being better?"  WOW, from the mouths of babes!  an 11 years olds perspective.  He knows he will have to help out with alot if I am affected by tx.  It is hard to get him in the groove right now but I am sure he will help out when the time comes.

As i believe nygirl told me prior, your son will be your biggest support!  THANKS!
Helpful - 0
Avatar universal
My heart goes out to you and your daughter. I think you did the right thing in the way you spoke to her. horrible that little kids have to deal with this, but if you continue to try to stay upbeat no matter how down you may get, that will encourage her.

wish you the best.
Helpful - 0
Avatar universal
Hi Lindy,

I can so empathise, I have a daughter of 11, (and 2 younger 7 and 3) and my oldest was so scared when I was diagnosed, and when I started tx especially, (shot 42 tonight) and said very similar things to yours - what if you can't do things with me etc.... It has turned out OK so far, she does understand now that I might have rubbish days, and she does try to help then. She has also learned to cook spaghetti bolognaise and fairy cakes! which is a bonus. At times I think she really likes the fact that she can have a bit of responsibility, and can look after me a bit.

Hope this info is of some help to you, and I think you have said the right things to your girl. If it would help I can give you an email and your daughhter could contact my daughter for a bit of a chat.
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Avatar universal
Your approach is one of empowerment vs fear. That kind of excellent parenting will arm her in life with the tools she will need. I can relate so much to you wanting to protect and shied your child from the harsh realities of life, it just breaks your heart when they get old enough to start picking up on how hard it gets at times does't it? Your idea to encourage her interest in cooking is brilliant. She will fine tune her
" I can do this" equipment. When life hands her lemons she will make lemonade, and it sounds like your daughter will be making gourmet lemonade!
Helpful - 0
Avatar universal
The way I see it, life is a tough business. We can not shield our children from the realities and difficulties of life. She can learn through this how to cope with challenges and how to get through them. She will learn from it, it will better equip her for facing difficult challenges in the future and teach her she CAN do it and get through hard situations. You did a great job talking to her and telling her how it will give you a chance to be well "for good."
Helpful - 0
94007 tn?1224762736
I also have an 11 year old daughter!!!!! When my older kids and I were DX she felt left out, like we were in a secret club!!! She does laugh about it now.  I thank god she is free from HCV!! As is my oldest. This is a club she does not need to belong to.
The more info she has the better she feels. She is a great help as my son is TX and forgetful as am I so will remind him to take his pills and shot night is VERY exciting

The down side is that she is very upset whenever I dont feel well. I have to be careful not to blame everything on the HCV, like my migraines, being tired, etc. Sometimes I am just tired because I do an incredible amount of stuff in a day. And I cant do everything her friends Moms do because I work full time, am single, and am older!
she is so resilient though, as are most kids, and I still manage to get her to the activities she needs to get to.
Your daughter will be Ok - information that she can handle and constant reassurance. I hear you though
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Avatar universal
Lady:My doctor's philosophy is: If you feel too sick to work, then you are too sick to do the treatment.
------------------------------------------
That *might* be appropriate advice for someone with little or no liver damage, but certainly not for someone stage 2 or above. I was a stage 3 and unable to work for most of treatment. If I had followed your doctor's advice I would not be SVR today and might be heading toward cirrhosis. Your doctor's statment doesn't seem to reflect the urgency of treatment for many of us. Is he a hepatologist or a GI? I'm guessing the latter, but nothing really surprises me anymore. In a nutshell, treatment affects all of us differently and anyone planning on treating should have a "plan b" if they end up on the couch 24/7.

-- Jim
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Avatar universal
I open a comment page and then sit here just lisening to the ringing in my ears not knowing what the heck I opened this page for. maybe the ringing is all the hendrix feed back coming out. Like a musical flash back.
O.k now, Here we go. Just like alanon {spelling?} helps kids deal with thier parents alcohol.  You know what I'm just unable to write down anything.  I'm not an idiot but damn sure feel like one.  I'm trying to say, PLEASE have your kids talk to each other, I think thats a great idea, it even more then an idea it's an enlightenment.  Tell Cindy and Joe, or who ever, to start a room for freinds and family members.
Toast, yes I'm toast. What I really need is a little bit of marmalade, I like marmalade
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Avatar universal
hi again,

if your daughter wants to make contact then my email is

msmnypenny at hotmail dot com (I am thinking I have to write it longhand to get it accepted, is that right?)

I have spoken to my girl about it and she seems keen

Well, it is 6.45pm here in merry england and time for shot 42 now - yeuww

xx
Helpful - 0
Avatar universal
I think you are both wise going thru this now.  I tested + for the antibodies when my kids were teens and decided to not do anythng then.  That was 13 years ago.  Age is a negative predictor.  Since my relapse I have really been wondering if I would have had a better chance doing this when I was younger (I am 58).

I know it will be a challenge with children at home, but several here have worried about it and done it.  We do what we have to do, I guess.

moveabove - those were touching words you wrote.  I agree - single parenting would be so difficult without hep C, I cannot imagine it with.  My hat goes off to dancegirl, nygirl, chellski, and countless others here.
Helpful - 0
Avatar universal
You said:  I open a comment page and then sit here just lisening to the ringing in my ears not knowing what the heck I opened this page for


Have you had your hemo checked lately?  Before my hemo went REALLY south REALLY fast - I had the ringing as one of the first real symptoms that it was happening. Of course, I ignored it. Then when I started fainting (dead away and believe me I"m no little squishy squashy type of a woman...I am more the "Hear me Roar" type LOL) it was too far gone.  I should have listened more to my own BODY rather than waiting for "numbers" to come back.

It is kind of cool though......eventually you can ignore anyone that you want to and just listen to yoursellf and you don't even need to talk!  ;)

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Avatar universal
I had tests done last week and though things changed the counts are still o.k.  I wonder if blood counts can go up and down, that unless you test at the moments of them being low, they may never be detected.
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Avatar universal
i wish i had a keybord. my 2 yr old daughter found it hard to take when i wudnt share a bottle or a spoon with her(my gums bleed,even tho my platlets r high). then she stoppd asking. im so glad im UND, tho i wish id make as good a parent as nygirl.
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Avatar universal
I went from full time work to parttime work in July and then started special leave without pay when I started treatment a month ago.  I have not been able to manage work and care for my 4 kids (3 teens and a 5 yold).  Luckily for me (financially) my parnter works although he is sometimes away for weeks at a time, making me feel somewhat like a single mum.  My older kids understand whats happening although my youngest doesnt.  I spend alot of my time rapped in guilt because i am so lethargic all of the time.  The way I try and look at it is that I have to give treatment a go.  If I dont I will be in worse shape in the long run and kids always need you no matter how old they are (my eldest lives independently and is still demanding!!).  I admit I couldnt have done this and cared for a baby at the same time!! I spend a lot of time resting while my 5 y old is at school.
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131817 tn?1209529311
If my dr. told me if I was too sick to work, I was too sick to treat, I would not be treating now. Most days I am okay these days, but I can't count on making appts or cooking or anything. I wish I was well enough to work. Hopefully all this laying around will be worth it in the end. DD just posted a post from a cancer board from a woman who was on Interferon. It was a tear jerker. The symptoms seem the same for me. Sometimes I want to blame it all on the hep C, but the drugs do make many of us really sick.

Move;  The blood counts go up and down every week for me. Since my dr. likes to give me shots a bit early, I hide until I can get another blood test that the counts are up before I talk to him.
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154927 tn?1205242851
I hope you can help your daughter understand what you need to do "for the long term"..a better, healthier future. I know it's difficult to make the kids understand it all when they are young.

My doctor's philosophy is: If you feel too sick to work, then you are too sick to do the treatment. I plug through every work day, just one foot in front of the other, try not to take much time off, so that I can stay on treatment. I don't want to have to turn back now! I do work part time, & I have 2 small businesses on the side. I don't think I could handle full time right now. I have it fairly easy too..my coworkers help me, as needed, and I am allowed to go home early if it's slow and the store has enough coverage.
Good luck.
-E
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