positive aroound my daughter/i do go to support group, but maybe u can suggest one online too?

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jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 12/29/2007 12:19 PM (GMT -7)   
i have to say that i am very positive around my daughter. as i have said here before i am letting it unfold for her as she goes along. i'm here to help her with the drs and meds because this is all new, she never had to deal with something so important to her health,and at 19 as so many of you know gaining weight from steroids is another blow a confirmation of disease and the time of life when you want to think about dating, not how round you've gotten and the new pimples on your face, and i'm there for her saying that it is only temporary a step towards feeling better. but i don't hover or keep her from making future plans ie: she is planning a trip to israel and to study in spain, i say make the plans . i do go to a support group and have a close extended family, and she is not my only child, i have another daughter. but no matter what my face is showing , she is no dummy and it's her face that has lost a bit of light. so inside i am broken. but i will continue to ask questions if it's ok? i will search and search until there is no tomorrow for some help because that is who i am. i can't be complacent or we may miss an opportunity to get her one step better. -thanks
Mom to 19 year old daughter diagnosed 11/07.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/29/2007 12:52 PM (GMT -7)   
PLEASE, it may be that now, with her school vacation, your daughter is facing for the first time the fact that she has a chronic disease and her life has changed. What with being in school, taking exams and keeping up with friends, she has been able to push it aside. Now she has time to think. There is another thread going here about the emotional impact, and a lot of discussion about the grieving process we have to go through as we give up the people we were so we can begin to love the people we are.

As her mother, you are going through grieving for your perfect, healthy child. This is normal and healthy. But she has to go through it too. Hard as it may be, you can't do it for her and there probably isn't a whole lot you can do to make it easier for her. Your love and support are about the best help she can get. As your heart is breaking, you'll have to keep giving her room to grieve in her own way. Be sure, though, that both of you can come out the other side with new strengths and positive outlooks on life.

I wish I could give you a big hug right now.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine and Remicade.
In remission since April, 2006. Remicade has been my wonder drug.
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 12/29/2007 1:18 PM (GMT -7)   
I agree...

The more you ask, the more she may protect your feelings. You do have limitations as to what you can do for her... she has to learn the process of what works best for her on her own. She'll possibly at times be rebellious as we all tend to be regarding meds, eating, advice and just general regimens.

It sounds as though she has what it takes, with your support from within and afar...allowing her the space is what she will need...for she may not be focussing on it as much as you.

Curious...how old is your other daughter and what's her perspective on her sister's newly diagnosed UC? How has her behaviour been regarding your focus?

I have no doubt you will find the accepting middle ground...it takes time, allow it. 
 
 
quincy
*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 12/29/2007 1:21:41 PM (GMT-7)


aksnowbunny
New Member


Date Joined Dec 2007
Total Posts : 13
   Posted 12/29/2007 3:53 PM (GMT -7)   

Please:  I am ever so sorry to hear of your daughters' situation.  I too am a mother of a 13yo boy diagnosed with severe pan UC over a year ago.  To be blunt, it has been a virtual rollercoaster the last year.  I can't tell you how many times I have questioned, "How could this happen to my perfectly heathy boy, my only child?"  The countless times I would just breakdown balling because this wasn't suppose to happen to US, but all the time trying to never show my fears to my child.  But it did and here we are.  I am not a religious freak by any means, but I do believe that we all have a purpose here and I strongly believe that God tests the best of us.  This is the challenge that God has tasked my son with.  What I try to keep into perspective and to also teach my son, is the sincere knowledge, that although life really stinks right now literally someone else out there has it worse than he does.  I certainly wouldn't want to be in their shoes!  I tell my son, "You could be your grandpa."  He's blind.  I can only imagine the challenges he faces every day liveing alone in the middle of nowhere on the top of mountain here in rural Alaska.  I wouldn't want to be him, but I also have great respect that he has continued out his life long dream regardless of the blows he's been dealt.

My son still struggles a year later to get his bleeding to stop.  We've been in and out of the doctors every couple weeks for the last 15 months traveling over 100 miles every time to get to our only doctor up here that will be leaving the state in 6 weeks.  We have no support up here, and very soon no doctor either.  But we try to make the best of it and find laughter where it is sometimes difficult to find.  When he goes to get poked every couple weeks, I am his screamer.  He receives the needle and I scream for him based on the level that he sqweezes my hand.  I remember one visit he hadn't dranken enough water prior to his blood draw.  The guy poked him and didn't have any blood come out.  He went to poke him again and my son stirnly stated, "Hey man I didn't come here for no buy one, get one free stuff!"  :-)   Of course the gal last week told him he had 4 Alaska oil pipelines in his wrist.  You just have to try to find some fun because otherwise it certainly WILL be depressing!

I think my savior has been research. Research that tells me this disease probably won't kill him tomorrow.  Stories from other folks and their experiences of successes and unfortunately some not so successful.  But in the end it will all come together if WE DON'T LET IT BEAT US DOWN!

Hang in there mom! tongue


Christine, Mother 34, of 13yo boy
Diagnosed October 2006 Ulcerative Colitis
Meds: Colazal 750mg x 9, 6-MP 50mg, Vit D 400iu, Vit C 1000mg, Iron 50mg, Remicade 3rd infusion

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