feeling sorry for ourselves...

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littlemisscoughsalot

New member
Disclaimer... I am going to be very honest with this because i need to right now. If you don't agree or have anything positive/helpful to say, kindly ignore me. And please respect my choice of atheism and spare any religious talk because it does not help me.

my daughter is almost 6. She was diagnosed at 4.5 and is about to head in for her 3rd pulmonary admission. She's also had 2 dios admissions. Wtf? This disease is horrible! I can't relate to anyone with "normal" kids. she's so traumatized by her dios admissions, she's in shear panic about going back into the hospital even tho she knows getting a picc isn't as bad.

We are both having a hard time with this one. she's gonna spend her birthday in the hospital, and knows it. Its a horrible time for me to take 3 weeks off work, and I'm just done with it all together. No one understands how hard this is. no one feels the pain of hearing their child tell you "i don't feel very good momma" on a daily basis. her Dad is completely out of the picture at this point. My family helps a lot, but all i see in their eyes is pity and that's not what i need. I want this effing disease to go away. I want my baby to not have to deal with this crap.

i really need someone who is somewhere on my level. I know what it sounds like.. waa waa poor me... Get over it. That's my attitude 99%of the time, but not now. Right now i hate this disease more than anything, and i want everyone to know it.

Thanks for giving me my soap box..
 
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Lety

Guest
All I can say is that I hate CF too. I hate all the devastation that this illness brings. I hope she feels better soon.

Lety mom to 7 year old daughter DDF508, g tube
 
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running4life

New member
I go through feelings of this and even was in denial about it for many years, but I've learned that it's not going to change and I have to accept it. Instead of telling yourself that you can't handle it and it's the worst thing in the world, tell yourself the opposite. Say "this is uncomfortable, I do not like it, but I can and will get through this. I will be strong and I will accept things as they come." Thats what has worked for me and I hope that works for you. No, this isn't the ideal life or the life we would have chosen for ourselves, but I wouldn't be the same person without it. It has strengthened me beyond belief, given me gratitude for all the things I DO have, and made me have joy for all the moments that I can laugh and play and enjoy life. Hang in there, it doesn't get easier, but you will get stronger. Have grace with yourself. Don't beat yourself up over it.
 
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heidikk

Guest
does it help you to try to focus on the good things in your life, no matter how small? Yes, this stinks. It's beyond horrible, but what a joy it is to have your daughter in your life and how much worse your life would be without her. :) It's easy not to notice when things go right, when you get the best, most helpful nurse assigned to your room, or when you happen to pull into the parking lot just as someone in the first stall is pulling out, or when a hummingbird at the feeder gives you a moment of exquisite beauty. Life is full of bad things, but it's full of good things too. Also, I just read someone's blog post here about the possibilities of kalydeco in the near future even for those of us who have ddf508 kids. There is hope.
 
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Ratatosk

Administrator
Staff member
We all go thru this. When ds was in the nicu I couldn't stand see the normal people leaving the hospital with their newborns, see happy pregnant moms coming into the hospital for birthing classes. It seemed so unfair. But then I'd see babies with physical and mental disabilities --- micro preemies, neural tube defects... Yeah, it sucked big time that ds had a central line in his chest and we were struggling to feed him, do cpt.... Overwhelming, but in a month we got to take home our baby. One child was 6 months old and other than volunteers, nobody ever came to see him. 4 years ago after dealing with near daily vomiting episodes, ds ended up back in the hospital due to another blockage. We all struggle, it's our job as parents to put on a happy face and protect our kis from our fears. Sorry you're going thru this. Things will get easier!
 
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Gracie4

Guest
I'm guessing that since she's so young you're unable to carry-out her IV treatments at home, which is to say, you don't have a babysitter/caretaker who can come to your home while you are at work? Just because someone needs IV treatment, doesn't mean that they need to be hospitalized.

As far as her PICC line, I hope that they sedate your daughter as they place the line!
 
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azdesertrat

New member
I was very fortunate; CF didn't affect me too bad as a child. I've always had the digestive ailments that go with CF. For whatever reason though, I never really seemed to get too down about it though. One time, on a field trip in first grade, we took a train ride from our town to the next few towns over. I remember having very greasy diarrhea & messing all over the seat in the train. That fairly traumatized me. I went through childhood & my teens underweight, with abdominal pain almost daily along with the horrible gas & stinky poop that is so prevalent with CF'ers. I always did my best to hide the issues & I must have done a pretty good job of it. Of course, I was picked on, pushed around & pretty lonely all through school but I guess I came installed with way more resiliency than normal. I just couldn't imagine having to endure childhood again. This is way off topic & I'm sorry. I guess what has gotten me through so much of the difficulty of CF is my Faith & I've always had the ability to say 'No matter how hard you think you have it, all you have to do is look around. You can ALWAYS find someone that has it worse.' I'm sorry if this doesn't help you, its the best I can do.
 
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triples15

Super Moderator
I just want to say that I'm so sorry for what you are going through! I'm the one with CF in my family, but I often think of what it might be like if my daughter had it, and I honestly can't even imagine. I think it is MORE THAN OK for you to vent your honest feelings, and to feel sorry for yourself and your daughter. It's definitely ok to let yourself go there, especially since you don't normally wallow in it! I let myself wallow every now and then, and then move on, as I'm sure you will do!

Take Care and I'm hoping for a smooth admission for your daughter. I'm sure you and the nurses/child life specialists can still make her birthday special (although it totally sucks she'll be spending it there). I've spent a few birthdays in the hospital, and to be honest, looking back I have positive memories of them, if that helps at all! ;)


Autumn 32 w/CF
 
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azdesertrat

New member
That is one thing I really like about this site; we can all be honest with each other because so many of us have the same problems! I think it does help a bit to have a place to go where you can let these issues 'air'. For better or worse.
 
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Justinsmama

New member
As a mother we all go through feeling sorry for ourselves and our children. I just put my son to be AGAIN with a "Mommy, I don't feel good" and knowing he is on the 4th antibiotic since Feb. Just when we feel we can't take any more, our children need us and we muster up the strength and courage to hold their hand and walk them through this. I pray everyday for a cure for my son and everyone else's child.
 
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TreasureGoddess

Member
Good luck and hang in there, it really does get better sometimes (and worse too, I'm afraid). I think we've all gone through those frustrations and resentment periods. Ask if there's any child life staff at the hospital. Can they help make your kiddo's birthday special? My son spent halloween in the hospital and it was really hard for him. (also a Valentine's Day but that wasn't as big of a deal, but still was hard having him miss his school parties). If you let the staff know your daugher is traumatized about being in the hospital they can have the social worker or psychologist work with her or even send in some of the residents/student trainee's to play games, hang out or watch movies. Bring comfy stuff from home, pj's, stuffed animals, games, etc. Let your family know that you'd like help with people coming in to stay while you are at work. If they can't come stay while you're out, maybe you can give them specific things to be in charge of (chores at home, finding fun games or craft activities for your daughter to work on at the hospital, etc). I found that some of my family members would want to help but not know how so just told me they were sorry, etc. Once I said "could you find XXX or YYY for us?" and gave them something they could DO they really came through. Good luck.
 
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Munsey

Guest
I feel the same way about CF. Sometimes the anger and frustration get the best of me and I recently had a full on panic attack while trying to juggle work and 28 days of MRSA eradication protocol at the same time. I was searching for answers/help and came across this http://www.happyheartfamilies.com/articles/article/7616531/161253.htm
which helped me understand a little better the guilt I was feeling about not being able to do/handle it ALL without feeling sorry for myself. I'm not going to feel guilty about it anymore. You shouldn't either. Just ride it out the best you can;)
 
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