I try not to rant to much but here is a long one

[MandaMe1986]

    So don't read if you really don't want to hear someone B****

I have been sick sense November, in fact we left for Ga on November 2nd and I had already been sick for almost 3 weeks.  So Oct... I keep getting sick! I don't fully get better before the new what ever it is hits.  I was in the hospital on the 12th of Jan because I had a blood clot in each lung.  I finally started feeling like my self, but not nearly what I need to be before getting sick.  And once again I have a cold or something. I can't stop coughing, my voice sounds is all low and about gone. And those of you who  have talked to me on the phone know I sound like a 16 year old cheerleader. Lol, I'm not kidding. But this has been like 3 months of hell.  I don't get fully better before I get sick again so I keep getting knocked back even more. And its driving me crazy.  Then I find out my lupus is attacking stuff again so need to get back on immune suppresents.  Not gonna help with the not catching everything I come within two feet of. But have to wait to see what Labs say to know if I need chemo again (this will be the 4th time) or not.  Hopefully not. Cause I just couldn't handle that right now on top of it all. I am just having so much trouble.

I have never been the parent who didn't get out of bed and make my children breakfest or make dinner.  Even when I  had to leave to puke cause the smell of eggs turned my stomach cause I had chemo the day before.  But I have to force myself out of bed in the morning, more so then I have ever had to before.  I have to drug myself every night if I want any chance at some actual sleep.   And today I had both kids sick, and watched my niece for my dad cause she was home sick from school.  So needless to say I am extremely tired right now. I just got the kids down for a nap. But I can't lay down, fibromylga is acting up along with all the lupus joints stuff. I feel like I am on the verge of insanity right now.

What do you guys do when you have episodes like this? What helps?

The other day a few friends of mine went out. They decided they were all gonna go to the casino and have a few drinks, and just let the stress of the week and life go for a bit.  Of course they did like they always do asked me to go. And like I always do said no I really wasn't feeling up to it.  I wish just once I would be. You know? I'm 23, all my friends are heading out at 10 to go dancing. By 9:30 I can barley walk to the bathroom I hurt so bad. It sucks.  That is all there is to it, it sucks.

I have never been one to say poor me, I'm so young, I have so many problems. Blah Blah Blah.  But I figured I have hit my 9th year with all this crap.  And each year it gets worse. I have the right to say it sometimes damnit!  I'm just really irritable right now, and I hate the feeling. I'm having panic attacks like crazy, I'm always braking down crying.  One of the things about all this being sick is having my children see me cry sometimes.  And it seems like so much lately they have had to see me cry.  And like the other night I was upset, and I really didn't feel good. So I started crying and couldn't stop.  I went into the kitchen cause I didn't want to cry in front of the kids. And out of nowhere Sandia comes up to me and hugs me and says "its okay momma I know your sick you don't have to cry".  That broke my heart!  She is 4!  That thought should never have to go threw her head. Never.

To top it all off. I am being dropped from Medicaid at the end of this month. And not sure if I am going to be able to get it back, struggling with them like crazy.  Moms on my ass to apply for disability again, even though I have been denied a dozen times. Have to go to a ecocardogram tomarrow to make sure the blood clots didn't damage my heart. And go threw a bone density test on Friday to make sure the pred. didn't jack me up more then docs think it did.  Like I needed more crap to deal with!

I have been told that it can only get better sense Thanksgiving.  When will it start?


Okay enough from me. Thanks to all of you who made it threw that whole thing.  Sorry just needed to rant a bit.  Hopefully won't hear another one for a long time from me. Thanks everyone.

p.s. I'm really glad I'm sticking around. I really need this site right now....

[willowtreewren]

OH, Manda, honey.

Wish I could just breeze in there take care of you for a while. You are bearing up under so much. 

If the rant helps, then rant. There will be those of us who are here to listen and hold your hand for a while. I only wish I could do more.

 

[dwcrawford]

Mandy my love,

The first thing you are going to do is stop apologizing for your rant.  There are people here who rant on a daily basis who have not nearly the problems you do.  I say stop calling it a rant and start bitching, cursing and letting it all out.

The second thing you will do is start letting those people who care for you do for you.  Your father may surely be tired after dialysis, but he wants to take care of you.  It does him good even for helping you.  So you will take advantage of them all including  ole Matthew.  And you do nothing but take care of yourself.  Matthew should make a pretty good baby sitter.

Finally you will take advantage of your two  good buds on this site and call  us (or text, but not me) every time you need to talk and bitch or curse the world.  I saw your Facebook message earlier but just didn't realize how serious it was.  I shouldl have called you then.  I'll be here to listen.

Love you,
Danny

[del]

  Manda you need to rant all you want!!  it will help you feel a little better. Let whoever wants to help you help out. Even ask for help if you need it. Rand and bitch to us anytime you like!!    Wish I was close enough to help out!!

[Malibu]

Hi Manda.  I am so sorry for your troubles.  I am reading and listening.  I don't know what to say except rant on girl!  It does help people to help others...Danny is right -- let your father help you.

When I am at my witts end and just can't stand one more minute of my miserable life somehow a ray of hope shines through and lifts me up.  But not until I've hit the lowest of dumps.  A good chat with a girlfriend or some time by myself doing something I like to do for myself will do it sometimes.  Yesterday I fired up the chimenea, got a glass of wine and my new Nelson DeMille along with my outside reclining chair and just sat there by the fire.  IT WAS GREAT!

I hope you feel beetter soon.

[Rerun]

I hope it helped some to just put it down on paper.  It makes me feel better to know someone else understands.  I hope you truly start feeling like you again soon.

               

[galvo]

It's so bloody rotten. My thoughts are with you. But I guess that doesn't help much.

[Jean]

Manda, I hardly know you, but I feel just terrible for you. I dont know what to say, but of course, you know, I wish I could help you. Let your Dad help and maybe if you put your heads together, you can figure out a way to get thru this. In the meantime, I hope you start feeling at least a little bit better and very soon. Rant whenever you want to, that is what all our little shoulders are here for. 

[Hanify]

I would love to be able to come and give you a few days off.  This would last until about 2pm on teh first day when i would realise I so don't have the energy for 4 years old twins!  I would then be ranting myself about how tired I was and how much work they were and trying not to let them know that!  Then I'd be exhasusted just THINKING about what to make them for dinner and how to get them into bed.
All in all - I seriously do not know how you do it! What an amazing person you must be!

[dwcrawford]

Mandy, I think of you as my little sister.  I know you think Grandfather but I dare you ever to say it!!!  You mean so much to me and you are always helping me over rough spots.  I hope I can help you now just a little.  (Hey, I would adopt the twins -- at least one -- but you've turned me down on that beforeJ   

I'll be calling you when the "sun goes up"..

Love, DW

[monrein]

Manda, unload here any time you need to and please know how much we care.  Many of us would come help out if we lived closer and try to lighten your load if only a little.   

[looneytunes]

Manda, you have such courage for someone so young.  I admire you for being able to cope with all of this 24/7.  If a rant session helps (and it ususally does for me), RANT ON!  We are all connected by kidney disease and all are here to help each other get through.  Sending a hug your way.   

[fc2821]

   Amanda, you have been too much already.  I wish you didn't have to experience this too.   
   
    Glad you decided to stay.  Did you get my pm asking you to? some aren't getting to the person I send them to.  I understand your not feeling like responding if you got it.
     

[MandaMe1986]

Rob I did get your pm. Sorry I didn't respond, not like me. I just haven't gotten around to it yet.  Im sorry.

Okay so a quick update before I take off. On my way back to urgent care. YES ahhhh! Anyway called to get into doc this morning. He dosen't want me to be seen in office. He wants a chest x ray and possibly a ct done. Wants to make sure cold hasn't effect INR enough that clots are back, and make sure don't have infection in chest or anything like that.  So Im off......

All I can say is thank God for family. My uncle at a drop of a dime is heading over here to watch the kids for me and my dad is gonna go with me.  So that is nice. Tho I am worried about my dad, he has been doing way to much and is under the weather himself, but is more worried about me to take care of himself. Just more stuff to deal with at the moment.

Alright I will check in later.

~Amanda

[fc2821]

     Amanda, I sure hope you get good results and things improve for you.      I know it has been rough.       
     That's ok about not answering the pm.  Like I said, understnad I know you have had  "things come up"  tht are more important.  The main thing, you didn't leave.     
   

[Hanify]

Good that they are getting things done and you'll know where you're at.

[Sunny]

It breaks my heart to read what you've been through since Thanksgiving.
You're right, it's not fair someone as young as you has to deal with all this, but you are strong and you will get through this.
Sounds like you have wonderful little children who have learned to be so understanding and empathetic, very good traits to have which will serve them well in life.
Get better soon.

[kellyt]

   I hope you're feeling better.  It sux what you're going through, Girl.