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Posted 5/28/2013 7:35 AM (GMT 0)
Hey all,

I had the worst day yesterday Memorial Day. First off it was the 2nd anniversary of my Dad's passing. I've really not dealt with all my grief issues. I had so many things happen right after coming home from the funeral. Needless to say I was very weepy today.

Then my daughter blind sided me with comments about my health and my Dr's. She bottles stuff up until she can't hold it in anymore and bubbles over.

I found out that she feels that my Dr's treat me like a lab rat, and she didn't say it, but I think she's a bit mad at me for allowing them to treat me that way. She expressed how unhappy she is watching me get sicker, her exact words were watching me die.

She said she's mad at my Dr's, that she resents them, she's VERY angry. She told me flat out IF she has lupus or a different autoimmune disease she's not going to let them touch her unless she feels what they want to do will work. She feels this way BECAUSE of what they've done to me.

She asked me to answer a question. She wants me to tell her if I want her to live her life OR stay and take care of me until I die. I can't begin to express how much of a BURDEN, FAILURE, TROUBLE MAKER, JUST ALL AROUND LOSER I FEEL LIKE. I feel so GUILTY, I should have hidden things from her better. I shouldn't have been honest with her about my condition. I NEVER wanted to hurt my baby girl in anyway, I'd die for this kid, she's my world.

Things just aren't good right now, I feel TOTALLY ALONE, in this world. My husband is upset most of the time, he hates it where we live, he's being furloughed on his job, so I know he's worried about money and such. He's pulling away from me and my daughter said all we do is bicker, and she's uncomfortable here at home with us.

I just don't know what to do, where do i turn to. I live in constant pain 24/7 at a sold 7-8/10 daily. My daughter is so upset that they just can't make me comfortable. She's falling apart watching what's happening to me. What do I do, I just feel so so lost, any suggestions would be helpful.

I truly can't help but FEEL if I stopped all treatments and just gave up. The sooner I died the better my family would be without me. Heck I mean the Dr has already told me there isn't a cure for my type of leukemia and it's gonna kill me.

Sorry, to vent and dump on you all, I truly have NO ONE right now that I can be honest with and say what I'm truly thinking. I just have you all. Thanks for reading this long post, please just pray for me. My world is falling apart and I have no idea how to stop it.

Hugs,
Barbara
Posted 5/28/2013 3:55 PM (GMT 0)
((((((((((((((((((((((long, gentle hug)))))))))))))))))))))))

I'm sorry everything's seem to be piling up on you right now.
Everyone is scared of losing you right now and they are trying to separate themselves from the reality of your and their own mortality.
When my grandfather was diagnosed with cancer I found myself pulling away from him trying to distance myself from it. I regretted doing this to this day.
They are just so scared right now and don't know what to do. They feel as helpless as you feel.
Maybe sit down and pour out your feelings in special letters to your husband and daughter. Then decide if you want to give it to them, save it, or destroy it.

Are you talking with a psychologist or minister to help deal with this?
Posted 5/28/2013 5:57 PM (GMT 0)
I am 30 years old. My mom has all kinds of health problems including dementia, bipolar, diabetes, and kidney disease. I am who takes care of her. My parents are divorced. I have a sister but she doesn't deal well with medical stuff.

The last three months my mom has been insanely paranoid. We had to have her put in the hospital and she actually came home worse. She says and does the meanest things and even though I know she doesn't mean it sometimes I lose my cool.

We have both said thing we regret. I do not resent my mother for needing to be taken care of. I have probably said something similar to what your daughter said but I only said it out of frustration. Even though every single day my mom makes my life miserable right now because of her paranoia I do not have one fiber of me that would not take care of her. Things get said that should not be.
Posted 5/28/2013 6:41 PM (GMT 0)

Barbara Lee said...

I can't begin to express how much of a BURDEN, FAILURE, TROUBLE MAKER, JUST ALL AROUND LOSER I FEEL LIKE. I feel so GUILTY...

Barbara --

You may feel like all of those things are true, and maybe they would be partially true IF YOU HAD CHOSEN to be sick. But you DIDN'T CHOSE it, and you do a darn sight more than you should. If you were laying around bellyaching, that would be one thing....BUT YOU DON'T!!! You are doing your best, and that is all anyone should be asking of you!

I know sometimes you might share more with her than you would like -- it's hard to resist when she's the person around. I wish you had a group, like a therapy group, where you could let it all out to people "with skin" -- that is, people who can give you real flesh & blood hugs...it isn't the same on here.

And yes, she is still young in so many ways, but the truth is important. My mother was much more ill than she let on when I moved 800 miles away. If I had known I might have made different choices, and been more present for her last 2 years. As it is, I wasn't given the truth and will always feel like I have been robbed of the chance to do better.

Hang in there, my friend. You haven't done anything wrong - you are doing the best you can, as are your family. I wish all of you could have some relief, and I'd send it to you if it were at all possible.

Hugs always,
Posted 5/29/2013 1:30 AM (GMT 0)
 

Hi Barbara,

      My heart goes out to you.  This is so typical of people in our lives who are trying to deal with their own issues around our dis-ease.  It gets frustrating, but if we can step into the other's shoes, we are so much more open to experiencing their pain and suffering.  My brother is a good example of this.  When he found out I was ill, he became more and more distant.  He generally does not call me...usually it's me making the contact.  When he heard I was in the hospital, he never called or e-mailed to see how I was doing.  I know in my heart that he loves me, but he just cannot handle the "sick" part of who I am.  I have learned in small increments to let go of my expectations and attachments in this world.  Not always easy and definitely challenging at times.  Not only do we journey through our own personal healing, but the people dearest to our hearts have their own journeys to travel.  And sometimes that involves pushing us away.  I give people space, but continue to love and accept them.  I can feel that your heart is breaking and I sense your frustration and grief.  Remember that there are people in this world that love and care about you just the way you are.

(((((((((((((((((HUG))))))))))))))))))

Laura

Posted 5/29/2013 3:12 AM (GMT 0)
Oh Barb, I'm sending prayers your way. I'm sorry you are having such a rough time. But I know how much you love your daughters and the sacrifices that you have made for her. and I know she loves you as well. I think being a good mom is letting it be ok for her to say what she is holding in. If she didn't let it out she would push away from you. Plus she is 20 years old and she has her own struggles right now. starting with her new job and pressures. She has to blow up at someone and who is safer then mom? What she is saying is hurtful but she is really saying she loves you and needs you and is angry that she can't fix you. But as long as she is still talking even if it's yelling she is still right there with you all the way. Don't try to insult her by hiding things from her. She knows you better then anyone. With the things going on with you health you know it's hard on everyone. But you do all you can as a wife and mother. Would anyone else in your family be able to claim the same. I think everyone is going thru a real stressful time. Things are kind of caving in all around. But I do know that things never stay the same. Things will look different in a month from now. There is so much unanswered in your lives at the moment. I'm sure hubby is stressin over his job and your daughter is stressed over her job. and you of course , well where do I begin? I'm love ya and I'm so glad you are my very very very good friend. I can't be there but I can lift you up in prayer. and will call you tomorrow. Hang in there God is good all of the time. and there is a light at the end of this tunnel! (((((((((Barb)))))))).
Posted 5/29/2013 4:08 PM (GMT 0)
Hi Barb,

Okie said it all, diddo! You give back as much more than you take. They are just venting because they love you and worry about you. Nikita does have her own life - that is why she goes to the school of her choice and has a job opp in New York, so I really don't think you are holding her back. As for the lab rat yes you have been put through a lot, but you were ready for it, you had had enough and now you have some answers. I wish you could get some relief and have a better quality of life also.

Hugs,
Julia
Posted 5/30/2013 11:35 AM (GMT 0)
Hey all thanks for the support. Teddtlove I'm sorry that things aren't going to well for you with your Mother. I'm sorry that she's dealing with paranoid thoughts, I'm sure it's very difficult on you. I hope things improve soon for you.

I really am struggling I'm in a huge flare and can barely walk on most days. I also believe I've broken my ribs on the left side again sad sad . It hurts so bad I can't stand to even take a breath, and moving hurts so bad.

I'm going to get an X-ray this morning and see my primary Dr today. I did see my Rheumy yesterday, and he really didn't have a lot to offer me. He did say that I can stop decreasing my prednisone. I just really can't handle going ANY lower. He didn't increase it though and I'm not sure IF I can come out of my flare w/o increasing them.

He did have me increase the amount of injectable MTX I'm taking. He said if the oral surgeon says my mouth is healing I can resume giving myself injections. See the oral surgeon this afternoon. I took the last of my antibiotics this morning, so hopefully my mouth is looking well and I can try to stop this flare.

As for my family, well I guess I'm gonna just let the two of them do whatever they want. I feel with everything I'm dealing with, I just want some peace and quiet. I want to set things right with those who I've hurt in my past or present. I totally try to treat people kindly but I'm only humane and I'm making mistakes often in life. I certainly try not to intentionally hurt people. I just want to reconcile issues with friends and family before I die.

Not sure why I've had the life that I have, but I'm totally weary and just no longer have the energy to continue to fight on. The amount of pain I'm in has consumed me and coping with the multiple health issues have just become a HUGE burden to me. When I spend anywhere from 1-3 days per week at the Drs, it's just way way to much.

I pray that all of you can overcome your illness. It's terrible and unfair that we are left to suffer so. You are all in my thoughts and prayers and I hope that you all begin to feel better real soon. Thanks for your support.

Hugs,
Barbara
Posted 5/30/2013 6:57 PM (GMT 0)
I'm sorry you're feeling so low, Barbara.
I hope you can feel better and feel a little perkier.

((((((((((((gentle hug))))))))))))))
Posted 5/30/2013 11:01 PM (GMT 0)
I am so sorry you are feeling so down. I get it. I have a myriad of health problems. Until recently my husband was not very supportive. We live with his mom and we all work together to pay bills so she gets mad when I am too sick to work. He will not stand up for me and say I am doing the best I can.

It feels like every week there is a new dx. I am at the doctor several times a week. I have not only my appts but my moms as well because I will not let her drive. It is hard to keep hope alive. I am only thirty years old. If I am this sick now what will it be like when I am fifty, seventy, etc..

Maybe you should take some time for just you. Get a massage or if you prefer make it a mother daughter thing. It might even help with the pain. If you are too sick to leave your house many cities have mobile massage places. Maybe you could make a list of all the good things in your life or things you have to look forward to. Like I think I read your daughter is in college wouldn't it be great to see her graduate. Even if you are too sick to be at the graduation you could still have a small get togther at home. Or looking forward to her getting married and having kids. I know there are down sides to all of these things but if you focus on the good parts then you will feel better.

Yes there are limitation because of being sick. But there are also ways around some of those things. Each day we can choose how we look at it. I have days where the depression won't let me get out of bed tht doesn't even count how my physical state is. Those days I am focusing on the negative. I know there is tons of negative stuff. But if you look hard enough there is something positive. (I cold do with a dose of this myself). I know this is a battle for us each day. But take it one day at a time. Do not worry about how you will feel tomorrow or how sick you will be in the future. That stress will just make you sicker. If you want to talk please feel free to email me. I hope you know that I in no way mean to be rude. I am trying to uplift you. You seemed so sad in tht last post.
Posted 5/31/2013 1:13 AM (GMT 0)
 

Hi Barbara,

      Sometimes when the woes of the world overwhelm me or I sense withdrawal from the people around me, I escape to the garden where I can simply ride the warm waves of sunlight flooding tender new plants.  Sometimes I weed to help ease my frustration and anger.  Other times I just sit in my chair and listen to the birds filling the air with sweet song and melody.  Those are the moments that I savor.  Time to myself to heal, whine or grumble...just me, mine and I.....and simply the best medicine ever invented.  Hopefully, another (((((((((((((((((Hug)))))))))))))))

from my heart will help.

Laura

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