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Thread: Mother and daughter experience

  1. #11
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    I know...i guess...my aunt died of kidney failure.....my mom ra......i know...my head says i know my heart says why couldnt i protect her.....i am very positive person just at a low.....im in a flare and am trying to work full time to hold down benefits like health insurance....i have raised my kids and my daughter to not feel sorry for themselves and move on....but after so many hospitilizations..tubes down her neck for heart procedures.kidney biopsies...helping lift her out of bed cause she cant...watching her friends leave cause shes too tired to go out or blown up fromprednesone....as a mom it hurts and i cant help wonder why she got my dna......my central nervous system is under attack and my lungs.....i will bounce back but so many years of fighting get tired.....however people are mostly kind and good.....lfe is good......i need to be strong for my daughter........thank u somuch for answering

  2. #12
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    I may not have given my daughter the disease but the docs at major hospital are fascinated that i have it...my mom ra...my grandma ra nad my aunt died of complications of lupus.....i am so tired....being there for my daughter is a given.....i love her.....but the countless procedures in the past 5 years...the hospitilizations....the strain financially.....the people that dont get it but how woukld they...battling it myself.....ive been in the hospital lol not when my daughter is.....in a flare now and working.....trying to maintain the not feel sorry for oneself because there are so many worse off......my dad with alzheimers...my sister cerebral palsy with mental retardation and i need to help want to help...and i want clean sheets a clean house and my daughter well.....thank you for answering....means alot ill be more helpful next round........in from work god bless

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    As you can see i am a little emotional......thank you for answering......as i reply to posts i am crying didnt realize how long i have kept my emotions under wraps...been 5 plus years for my daughter......she is now 22...started in hs....i kept bringing her to her dr......i asked them to check her for lupus they thoughti was over reacting even though i had it my aunt my mom ra my grandma ra.....watched my daughter srtuggle...her freshman year in college she had her so clled uti was actually lupus neuphrits...idiot drs didnt know gave her a sulpha drug....she landed in hospital...critical and it hasnt stopped...i am in a flare...we manage to not be in the hospital at the same time.....she is so strong....only cried 2x.....one time when she thought she might die.....the other time so tired of feeling lousy and her friends not getting it.....even after withdraing from college 2x she has graduated.....however now kidneys in tough shape.......im just feeling guilty....my dna......but i am not the only one nor the only paent with a child with a health issue....im just tired and in alow....ill bounce back....dont want to be a drag......thank you......truly

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    Thank you..........blessings......

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    Quote Originally Posted by CWARD View Post
    I know...i guess...my aunt died of kidney failure.....my mom ra......i know...my head says i know my heart says why couldnt i protect her.....i am very positive person just at a low.....im in a flare and am trying to work full time to hold down benefits like health insurance....i have raised my kids and my daughter to not feel sorry for themselves and move on....but after so many hospitilizations..tubes down her neck for heart procedures.kidney biopsies...helping lift her out of bed cause she cant...watching her friends leave cause shes too tired to go out or blown up fromprednesone....as a mom it hurts and i cant help wonder why she got my dna......my central nervous system is under attack and my lungs.....i will bounce back but so many years of fighting get tired.....however people are mostly kind and good.....lfe is good......i need to be strong for my daughter........thank u somuch for answering
    What you are feeling is so understandable. It is hard enough for us to live with this nasty disease but to watch our kids be ill is almost more then we can take. I understand as well the need to try to work for insurance. I hit a point where I wasn't able and that brings other groups of problems although I feel for you being in in a flare and having to work. Sometimes there is nothing you can do but vent to people that understand and thankfully you have found a place with people that have ears that always listen.

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    Quote Originally Posted by CWARD View Post
    As you can see i am a little emotional......thank you for answering......as i reply to posts i am crying didnt realize how long i have kept my emotions under wraps...been 5 plus years for my daughter......she is now 22...started in hs....i kept bringing her to her dr......i asked them to check her for lupus they thoughti was over reacting even though i had it my aunt my mom ra my grandma ra.....watched my daughter srtuggle...her freshman year in college she had her so clled uti was actually lupus neuphrits...idiot drs didnt know gave her a sulpha drug....she landed in hospital...critical and it hasnt stopped...i am in a flare...we manage to not be in the hospital at the same time.....she is so strong....only cried 2x.....one time when she thought she might die.....the other time so tired of feeling lousy and her friends not getting it.....even after withdraing from college 2x she has graduated.....however now kidneys in tough shape.......im just feeling guilty....my dna......but i am not the only one nor the only paent with a child with a health issue....im just tired and in alow....ill bounce back....dont want to be a drag......thank you......truly
    Just get it all out. Leaving things bottled up just makes us worse. We do understand. We really do

  7. #17
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    Hi CWARD, welcome to our kind family. Gosh you sure do have a lot of suffering for a long stint. I remember saying something to a friend one time, "I'm not a whimp. I can handle pain, but I can't handle watching my children in pain, especially for a long time." It's even harder when worry for them makes you even more sick.

    One thing I have discovered is that there are seasons in life that are hard & long but like the seasons , things can change. This helps weather the times of sweltering heat & bitter cold. These times come to all of us for different reasons and in different ways. I don't know about you but in truth, I would much rather spend time with someone who has weathered storms than with someone who only knows the good weather. They are people of substance & good character. I guess this is why I love the folks here at WHL. People of substance!

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  9. #18
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    Hi CWARD,

    I'm not being insulting but with everything that's gone on with your life and family member's having it besides yourself and now your daughter which is such a shame with what she's gone through in 5yrs..it's a wonder you have'nt lost the plot but you sound like an excellent fighter and that goes a long way with your daughter needing your support and doing all the venting you are will release loads of pressure off your mind, especially to people who suffer in the same way.

    I hope your daughter is feeling abit better today and yourself also and my heart goes out to you both.

    ((HUGS)) Terry xxx

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