Just want to help in some way?!?!

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Lori2203
New Member


Date Joined Oct 2009
Total Posts : 18
   Posted 10/8/2009 9:41 AM (GMT -7)   
Hi my name is Lori.. I'm new here.. My mother was diagnosed with lupus in her early 20's .. she lived a rough life.. mentally and physically because of the lupus. She recently passed away in Feb. not from lupus.. unfortunately medical negligence. I am 24 years old.. I don't know everything but I know a lot about lupus.. well what my mom had went through. I just want to help people or just if they need to talk.. because I know how hard it is to live with an illness. So if you just want to talk feel free I would be glad to. Thanks so much. Lori

jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 109
   Posted 10/8/2009 10:48 AM (GMT -7)   
Thank you, Lorri. :-)
Jessica, diagnosis: unsure


kaykayb
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/8/2009 11:57 AM (GMT -7)   
Hi Lori -
I'm so sorry for your loss. You're too young to have already lost your mom -

Lori2203
New Member


Date Joined Oct 2009
Total Posts : 18
   Posted 10/8/2009 12:00 PM (GMT -7)   
Hi Kay.. Thanks.... I keep her with me all the time.

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 10/8/2009 7:27 PM (GMT -7)   
Lori,
YOu are a sweet heart to want to make something positive out of a tremendous loss! God bless you! Judy

Lori2203
New Member


Date Joined Oct 2009
Total Posts : 18
   Posted 10/9/2009 7:31 AM (GMT -7)   
Thanks Vet... I try.. It's such a horrible thing.. .I work in the hospital.. I see people get neglected from.. doctor's, nurses etc... I have nothing against them it's. just that people put ALL and complete faith in them .. . which they should.. but also be aware you know?.. My mom was sick my whole life .. My family and I accepted the fact that it could happen because of her illness.. low and be hold.. she did.. because someone making a poor decision .. that took 2 seconds .. a decision that changed my family and I for life.... Just hoping that if you read this.. just be more aware.. PLEASE..

Love always Lori

Jenkstrojanmom
Regular Member


Date Joined Sep 2009
Total Posts : 44
   Posted 10/9/2009 7:14 PM (GMT -7)   
Lori I know exactly where you are coming from I lived with a very sick husband for 4 years he passed away 4 years ago leaving me and a 9 year old son we were married for 11 years before he passed and it was the hardest loss ever until i lost my 12 day old baby a year later, so I see the need you have to reach out and help others just by your experience. I give alot of my time to diabetes and kidney patients since that is what my husbamd died from it for me is a way of healing and continueing something that ws close to him. My son is 13 now and in the Honor Society and he does lots of work for a diabetes group. My new husband also joins us for meetings it's his way of supporting me and my son. Please continue to post encouraging words and experiences we welcome you with open arms. May God continue to bless you and heal your heart.
 
JenksTrojanMom
Lupus,Sjogrens Syndrome,R.A.
Mother of one wonderful teenage son,blessed wife
33 yr old  Teacher Assistant in Okla.


Lori2203
New Member


Date Joined Oct 2009
Total Posts : 18
   Posted 10/12/2009 11:08 AM (GMT -7)   
Jen,
My heart melts for you.. I couldn't imagine that... I lost my mom ....then I think about my dad.. they were together for 29 years ....I am engaged to a wonderful man .. been with him for 6 years.. I couldn't imagine living without him.. I couldn't imagine your heartache..but like you said.. it helps me trying to help and to talk about it.. and share my experiences with people that are in similar situations... again.. I am sorry that you had to go through that...If you ever need to talk .. I am here.. smilewinkgrin

Love always, Lori

fragileheart22
New Member


Date Joined Oct 2009
Total Posts : 5
   Posted 10/12/2009 9:56 PM (GMT -7)   

WOW. I love this website!! I was recently told i have lupus. The news rocked my world. I've only had it for about 4 months but i fight the idea of death daily. I wish i had someone i could vent too. Someone that would completely understand my hurts, fears, pains, and my tears. Someone who understands that my heart is broken. IDK what i expect but i know one thing is that i am 22 yrs old and i want to have a full life. I want to experience marriage, children, my career. Am i making any sense??? PLEASE say yes confused

Fragile heart22


Lori2203
New Member


Date Joined Oct 2009
Total Posts : 18
   Posted 10/13/2009 10:33 AM (GMT -7)   
Fragile... I would LOVE to help you .. or just listen.. what your going through.. is tough..My mom got diagnosed around your age.. they didn't know much about the illness.. but they told her she would prob. have 5 years .. and she made it WAYYY past that... it's all in what you make of it and how you deal with it.. please e-mail me.. we'll talk.. Love always Lori

lorib2203@yahoo.com

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/13/2009 10:59 AM (GMT -7)   
Lori, I appreciate your story and your desire to help others. Many, if not most, of us on this forum are here because we need support, but also because we want to help others who suffer from AI diseases. I hope you'll jump into other threads and help that way.

fragileheart, what you say makes a lot of sense and I'm glad you found the forum. Why don't you start your own thread here and introduce yourself and tell us more about yourself. There are other women here your age that will be great support for you. And finally, hang in there! There is life after lupus.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


Lori2203
New Member


Date Joined Oct 2009
Total Posts : 18
   Posted 10/13/2009 11:24 AM (GMT -7)   
Patty.. Thanks.. I would love to help anyone that is in need.. .. I am fairly new to this site.. so I am not sure what "threads" mean.. other topics?? That's my guess.. thanks again Patty.. you have a beautiful name that was my mothers name.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/13/2009 11:42 AM (GMT -7)   
Thanks Lori. Yes, other threads are other topics in the lupus forum that are started by us members.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


fragileheart22
New Member


Date Joined Oct 2009
Total Posts : 5
   Posted 10/13/2009 11:46 AM (GMT -7)   
Lori thank you so much for wanting to hear me out. Why does it seem like your family doesn't get it sometimes?? they just dont get it. Maybe its because they will never honestly know what you are going through. Most days im ok. I've come to grips with my situation and I've moved on then there are those other days when my heart and mind are so heavy. Those days are rare but when they come they come hard. I hope im not being too dramatic...LOL!! My friend tells me that i am dramatic often.

Oh Lori I will totally email you cause i really do want to know more about your mom and stuff!

Fragile

Jenkstrojanmom
Regular Member


Date Joined Sep 2009
Total Posts : 44
   Posted 10/13/2009 2:19 PM (GMT -7)   
Fragile,
Oh how I know how you feel and if you need to vent or just have questions or just want to talk about life aside from Lupus jump online and log on to HW listening and understanding is what we do best. I am 33 and was diagnosed 4 yrs ago and I still have days when I don't deal with having lupus,I lost a husband around that time also,but like PattyLatty said there is life after lupus. If you want feel free to email me angelablakey@tmo>blackberry.com I will get it right away and respond right away. I know all about how you feel hiney and it is so normal. Please don't ever feel like you have no one that understands you and what you are going thorugh and remember you don't have to go through it alone.  Big hugs.
Angela
 
JenksTrojanMom
Lupus,Sjogrens Syndrome,R.A.
Mother of one wonderful teenage son,blessed wife
33 yr old  Teacher Assistant in Okla.

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