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1582614 tn?1310324908

Feel so alone in this nightmare HELP

Hello all it's me Denise back again. last weds was shot 7. I am on AD effexor, was working until lately. My problem... I am so emotional and my family just doesn't get it. My husband is so nasty and critical of me. Can't come home from work without saying something to hurt me. My daughter (26) is here "helping" til end of month. She's been here for 2 mnths. She wakes up nasty to me. I disgust her. I'm a bad mother, etc... all the while I want to scream but I have to try to keep the peace because of my 6 yr old son. I have a very disfunctional family. I'm loosing it. Why can't my family just try to keep me calm and understand that my head is so messed up right now. If I ask for help with something it's like I'm asking for an arm or I am lazy/or exagerating. So much more to tell. I don't know where to turn. No one understands. I'm so tired, I can't sleep, MY family gets me so worked up I have shaking panic attacks. Doc also gave me klonopin for panic attacks. Not really helping. On top of it I'm going thru pre-mentalpause, ra factor over 500, lower back, hands & shoulder hurt and have limited mobility, have rumatolosist app tues. Also have neutropenia. potasium low. Red cells are still good though! Sorry for rambling. My parents are gone my family can't stand me. I want to do this for my son! Yes I know everyone goes thru crap during tx. But I have no one. :(
Best Answer
233616 tn?1312787196
so sorry you are having these issues. It doesn't make our families change, but to know others went through it too... it does help to know it's common and you aren't alone.

It's harder to be a caregiver than we realize. We are the ones with the shakes, the skin with ants crawling around on it, the ones who can't get enough air to walk to the mailbox...or stand up in the shower, and yet THEY are the ones angry and resentful???

well yes, but there are reasons. they love you, and they are going through the stages of grief.  They don't want to lose you or see you sick, they are scared...for you and for themselves....they will have to process their anger, their bargaining with God, etc...and fnally get hopefully through grieving and come full circle...full circle is a return to love, to acceptance, to caring.  If you look up the stages of grief, you will see how we process death and disease. Sometimes folks don't process, they get stuck in the forst stages and never make it past them...they need help.

we are expecting our families to be OK but not all folks can be on their own.  Even ones with faith in God can get anxious for us.  Have you thought of trying to get your hubby or daughter to see someone?? Be it a pastor or a psychologist I think it's worth a try.

the psychologist really helped my husband, and he was getting very ansy...there's just a lot of stress..on top of which I got so messed up I could stand up to even cook, much less shop. Very tired.  For a lot of men, that is a real issue if they've never done it.

for your daughter it just sounds like she has her own life, and doesn't like having to be inserted into yours.I've seen more than one young woman melt down when expected to return the love that was freely given to them for years.  If she can't handle it, let her go...the resentment isn't worth it.  
If push comes to shove you can get help for what she does. And my six year old learned to cook his own oatmeal and a whole host of other things. They can be really grown up when the need arises.  
It might help you to make sure and get on Epogen if your HB goes low...and it might help to show your husband a list of the common symptoms of treatment, and of oxygen deprivation.  Perhaps he's be a little more understanding if he saw that list in print.
Anyway, keep your chin up, this too shall pass.
54 Responses
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264121 tn?1313029456
I'm sorry Deni, that your family hasn't been better with you about this.  And that you have so much longer to go without their support.  I wish I lived closer to you.

My family was fairly difficult as well, except for my son.  I was a divorced single parent.  My son put off college for almost a year and a half just to care for me while I treated and for a while afterwards, and he took excellent care of me.  I was so hypoxic from severe anemia that I was talking to myself a good deal of the time (and answering - out loud).  I needed help just to get out of bed.  

He is extremely bright and he could articulate to each of my specialists exactly what it was that I needed done.  And I had several appointments per week and I was hospitalized every ten days.  My grandmother and my father were only there if they absolutely had to be, and they resented it.  My mother and my siblings were absolute no shows.  It has caused a huge rift that still exists three years after the end of my tx.
Helpful - 0
1582614 tn?1310324908
Thank you all for the support you give! I'm so glad I found all of you! Very very helpful!
Bless you all and my wish is that we can ALL be healthy again. I am soo emotional right now!
Still didn't fix my printer... So I just printed to one-write on laptop. So as soon as I can I want to send each and everyone of you a note. Love ya! Deni
Helpful - 0
1749655 tn?1321800934
It's tough to feel lousy and then to have to deal with all the family issues.  Stay focused on your goal and your 6 year old son.  You are almost 1/2 way through this so try to stay strong.  I would talk to your doc and see if you can get something to help you sleep.  Lack of sleep surely weakens your resolve.  You AD meds may also need to be ramped up.  We are all here for you and I will keep you in my thoughts.
Helpful - 0
1582614 tn?1310324908
Hello all! Hope you're all doing well :-) Alot to catch up on... But first I have a different question.. Starting to panic now. Posting new question. Thank you love you all I will tell what happened between this post and now....
Helpful - 0
Avatar universal
Thank you very much for relaying everything I'd like to say in your letter to pple without hep, but could never quite put it all into words. I plan on copying it and putting it on my fridge.
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Avatar universal
I normally don't like saying this but I somewhat know what I going thru deni. I was diagnosed 2 yrs ago and my hub became addicted  to pain pills after hurting his back.this makes him hateful most the time , especially when he's running low. My baby is 18 yrs old. He's all I have but I just keep thinking that this is not his battle and I stay so angry because my hinny is too absorbed in his high than to help me live. Bit I know I've got to get past this and start taking care of myself. It's just so hard when u have no one, I know. I have no parents myself.My heart goes out to you. But u hang on there girl. I will keep u in my prayers. We all need someone.
Helpful - 0
1654058 tn?1407159066
You've had a lot of great encouragment from this forum. What would we do w/o that? Good news about your lab work. You know what? Just get alone. Block em out. Think about YOU. I've decided this is going down as the most selfish year of my life... because I'm gonna take care of me.
The thot that follows makes me think of your son tho. By being selfish now, you'll be able to give to him, and others for many year to come. You sound like a tuff girl. GGRRRR. You're gonna make it! Karen :)
Helpful - 0
1636196 tn?1337801300
this is the second time i have tired to write this post Brain fog is bad today!!!! sorry i have not been in here lately. work work work! god some days i really am not into it. family!!! that alone could be a forum by it's self. ( When people as us go to see ARE hep doc's ) it is us that ask questions ; right ? well my family dose not even have a clue about me sickness. Get this , I'm sitting there and my wife tells the doc that i can't start re - start tx , because i need a babysitter so i will take my meds  on time. the only thing she has read about the new stuff is if you miss are don't it on time bad things happen. she dose not even know what they are the sx. I'm with you sister!!! I am starting to think that the family can make tx worst. She even a medical libarian but just stick her head in the sand , with me sickness. thank for being in here it make it a lot nicer. sharing to yous all!!!
Helpful - 0
1639131 tn?1510818631
Just relized I spelled job wrong lol. Some times I spell things right and some times I don't. I was thinking about it and job is a little intense so it might be a little much for you right now but he does come out in the end even better of then when he started which is inspiring. Hope you're doing and feallg better! Keep in thouch.
Helpful - 0
374652 tn?1494811435
Lots of good ideas and support in these posts and sent with  a lot of caring.  I hope you can get through this and take all the good advise.  people should not hurt others and its just not right....... take some time to yourself, I hope you find the answers and can see the light at the end of the tunnel.
hugs,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,Mary
Helpful - 0
1639131 tn?1510818631
I hate hearing how you're being treated it really makes me mad for you. It's great that you're getting away for a bit I think it's much needed. Use it to refresh and regroup and just stay in a posative place with in your self. Keep staying in the moment with your little team you and your son have going on. This will help both of you threw this and give you a greater bond than you could have ever hoped for. may I also suggest reading the bible? It really does help. Psalms are amazing for a little lift especialy tword the end of them. Jobe is a good one too for insperation. He whent threw it all and then some. I don't want to push anything on you but just something that really helps me. Good luck and I hope you come back from your trip refreshed and renewed!
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1582614 tn?1310324908
IHello all! Thanks again for your responses.It's almost 10:30 am in sunny, hot, humid PA? Not always so hot n humid here for so long. I wish it wasn't so I could "play" outside (garden, mow lawn etc) Anyway I just wanted to let u all know I am off to my sister's in NJ, in my home town of Wayne. :-) Just brushing my teeth n getting some crap together and going. This should do me wonders! Then back for my 9th shot weds @ 9:45pm. I know some of you have been thru so much more and are so understanding and helpful. I am truly grateful each and every response! Love and Health to all of you! I really do love ya all.
Helpful - 0
Avatar universal
A lot of people are getting support from hcvsupport.org/  These are really a sweet bunch and some will come and actually be with you in person.  They have a chat group once or twice a week and sort of adopt you.  If you need to do something soon and a psych doc is not immediately feasible I believe they can really help.  
Helpful - 0
163305 tn?1333668571
Wow, tx is hard enough with support, I can't imagine how tough it must be for you.
Would educating your family about the side effects of tx help?

I've often thought we need some kind of retreat we can all go to while doing tx so others don't need to be around our crazy emotions and  we don't need to be stressed out.

What helped me get through it was remembering that it would pass.
Surround yourself with music, photos, flowers whatever it is that does make you feel good.
Focus on compassion for others. Sometimes it helps to get our minds away from ourselves, gives us a mini-vacation.

Good luck
OH
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1582614 tn?1310324908
Thanks so much for listening n advising. All of you are in my thoughts n prayers. Some background info .... I'm a Daddy's little girl. He was always there for me but has been gone 22 yrs :( I'm an orphan my Mom gone 2 yrs..
Helpful - 0
Avatar universal
That is great news! I think in the end you will find it is worth it. You have a little guy who is depending on you. All of us I'm sure are keeping each other in our thoughts and prayers. We can all do this, just come here to let loose we will listen.xx anne
Helpful - 0
1669790 tn?1333662595
"But is it worth all the **** I'm going thru?"  You are already 1/3 done with trt, and soon will be 1/2 way before you know it.  You are UND.!  Things are moving in a positive direction and keep reminding yourself of the end point.  Being here to raise your 6 yr old should help provide some inspiration to get you through this.  When your feeling down, tell him you need a big hug.

Venting is good to let off some steam, so keep on venting.  Hope you have a good week.
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Avatar universal
awesome - congrats
Helpful - 0
1582614 tn?1310324908
But is it worth all the **** I'm going thru? What's left? I feel as though I should have "cleaned house" before attempting this. Very hard. going on 9th wk weds shot. The way I feel right now I want a divorce, I don't want to see or speak to my daughter until I can forgive her for the way she has been treating me. My head is so messed up. I  try to keep it together for my poor 6 yr old. Poor kid, has to see this crap and me sick and I am the one cares for him emotionally. It's hard cause I'm such a mess! Thanks for listening. I love you all. There's more to come.
Denise xoxo
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1639131 tn?1510818631
That is just awsome news! I'm so happy for you like the others said just keep that great news in thaught the whole way threw and you got this thing beat! Lets hope my news is just as good : )
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Avatar universal
This is great news!!  Almost  1/3 done already also...Hang in there !

Will
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Avatar universal
Now that's good news.  For you AND your family, although they may not understand enough to appreciate it just yet.  Ride the wave, baby....and hang ten all the way.  (Trying to do a better job of keeping my metaphors from mixing so I don't get provoke another "danger danger Roy Orbison" from willing! :)

Wooohooo! :)

Trish
Helpful - 0
1477908 tn?1349567710
Woo hoo!! It's amazing how those words can work magic in one's outlook. Not detected, undetectable, UND - music to our ears. Hope and pray one day the same holds true for everyone!

Good luck, Denise!   Pam
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