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CWARD
07-11-2011, 06:04 PM
Fighting this disease for years....in bad flare...my daughter 22 having tough time since junior year in hs......feel so guilty i gave it to her

ruziska
07-11-2011, 06:18 PM
Do NOT feel guilty! You did NOT give it to her. You gave her love, you gave her presents, you may have given her a hard time now and again but you did NOT give her Lupus. If one had the ability to "give" lupus, I'm sure I speak for the majority of us when I say in that case we'd "give" it away!

I'm sorry you and your daughter are going through this. It certainly isn't any fun. Keep coming back to WHL and have your daughter do so as well. Here you'll find a lot of love and support and a lot of laughs too!

steve.b
07-11-2011, 08:11 PM
welcome cward,
sorry you need to find us.......
glad you have found us.

Peridot20_Gem
07-12-2011, 05:04 AM
Hello CWARD,

It's nice to have you with us at WHL and your with the most understanding people possible.

Sorry to hear how you feel and especially about your daughter but have specialist's in general said that your daughter's as been inherited off yourself?.... if it as been this is a risk taken in life especially if you want children, the same goes for epilepsey and certain illnesses and Diseases, some children are lucky some are'nt but what ruziska (Rita) as said and stated as said it all in a large way with the love you've given while she's been growing up.

It's going to be nice getting to know you and there's so many threads besides to venture through because whatever we have concerning Lupus sometimes extra symptoms can be given off but you'll get all the love and support you need from we all.

((Hugs to you)) Terry xxx

tgal
07-12-2011, 05:58 AM
I don't see this as a "risk you take if you want to have kids" with this disease because most of us don't even know we have it when we become pregnant. I personally believe that laying the blame on the parent is guilt that none of us need or deserve.

Cward, you have NOTHING to feel guilty about. You did nothing wrong and don't let anyone make you feel that you did. My daughter is being watched right now because of some things that MAY be the beginnings of Lupus and I know how hard that hurts my soul. It is bad enough to have to deal with this when it is your body falling apart but to watch your child is 1000 times worse. My heart goes out to you and your daughter. I am sorry that you had to join but I am so very happy that you did.

Please make yourself at home. Feel free to look through the old threads or make new ones if you wish. I look forward to getting to know you

magistramarla
07-12-2011, 01:52 PM
Cward,
Welcome to WHL. This seems to be a very common thing - we find that we have AI diseases, and then our kids turn up with them.
As everyone else has said, there is no reason for you to feel guilty. Like so many others, I had my babies when I was young and healthy and had no idea that I was going to be diagnosed with AI diseases. I knew that my mother's family had "arthritis problems", but it didn't occur to my young mind that it could be something else, and besides, young people don't worry about "old age" diseases.
I wouldn't trade my five wonderful kids and three even more wonderful grandkids for anything. Three of my girls do have some AI symptoms, but I don't feel guilty about it - I'm just very hopeful that medical researchers will find some cures before my girls reach my age!
I hope that both you and your daughter become members of our WHL family.
Hugs,
Marla

Saysusie
07-12-2011, 03:02 PM
I was diagnosed with Lupus in 1985 and then my daughter was diagnosed (in approx 1992) with Lupus. One thing that our doctors were adamant about was the fact that we both understand that I DID NOT give this disease to my daughter! Lupus has not been found to be hereditary (there are some indications that it is genetic - but not hereditary). Please, please do not put this guilt upon yourself.
Please know that we are here for both you and your daughter and we want to do all that we can to help you both. I am glad that you are here :-)

Peace and Blessings
Namaste
Saysusie

tgal
07-12-2011, 03:52 PM
I was diagnosed with Lupus in 1985 and then my daughter was diagnosed (in approx 1992) with Lupus. One thing that our doctors were adamant about was the fact that we both understand that I DID NOT give this disease to my daughter! Lupus has not been found to be hereditary (there are some indications that it is genetic - but not hereditary). Please, please do not put this guilt upon yourself.
Please know that we are here for both you and your daughter and we want to do all that we can to help you both. I am glad that you are here :-)

Peace and Blessings
Namaste
Saysusie

Thank you for this post. I was in a hurry to get to the cancer hospital because a young friend was having his bone marrow transplant and I thought of all the things that I should have said after I logged off and the majority of them were in this post. Thank you for covering it much better then I did.

There are enough issues for us to deal with for ANYONE to take on the guilt of passing it on to our children. Too many things must come together in just the right way to get an AI disease and genetics is only a tiny part

Elo
07-12-2011, 05:25 PM
Welcome to WHL (: I'm sorry that you had to find the site..but i'm glad that you did. It's an absolutely wonderful community, especially when you need a friendly ear to talk to.
You need to stop feeling guilty my dear. You didn't give your daughter any disease, so stop thinking like that!
I'm thankful that she has a mother who knows what she's going through, so she can connect and have a real support system. It's so hard when people don't understand what you're going through or think that you're actually sick, so her having you will be a big help during her hard times.

Welcome again, feel free to vent anytime (:
-Elo

CWARD
07-12-2011, 06:10 PM
Thank you sorry i work in a hospital failry bright having a hard time navigating this site....im a very positive person.....my aunt died of luous complications my daughter kidneys lungs.....started junior year hs..she is now 22 withdrew from college 2x tons of hospitilizations..heart cathertizations kidney biopsies...another flare this week kidneys acting up...friends that disapear....im in a two year flare..central nervous system eyes...brain issues.....get irritated at people that complain about stuoide stuff trying to get my balance back....life is good people are good hate seeing her suffer......so.....whats your story......

CWARD
07-12-2011, 06:17 PM
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

CWARD
07-12-2011, 06:24 PM
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

CWARD
07-12-2011, 06:34 PM
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

CWARD
07-12-2011, 06:38 PM
Thank you..........blessings......

tgal
07-12-2011, 08:20 PM
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.

tgal
07-12-2011, 08:22 PM
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

lovedbyHim
07-12-2011, 09:15 PM
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!

Peridot20_Gem
07-16-2011, 02:09 AM
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