Daughters new diagnosis

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Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 10/5/2008 3:11 PM (GMT -7)   
Its been a while since I have been around as my 13 year old has a confirmed dx of Lupus. She is seeing the same Dr. I am treated by at JHU. I now have 3 children with auto immune conditions. I do not understand how we just dont know more about the immune system when we have made such headway in diseases like Cancer. Its one thing to suffer as a person with diease and another to watch your children suffer. Each day I tell myself things to keep me going and to keep from being sad. Somedays though my efforts are not as effective.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/5/2008 5:38 PM (GMT -7)   
OH NO!! ((((((((((( Chaya ))))))))))))

I'm SO sorry life is such a struggle right now. YES! It would b so much worse to see our child(ren) struggling with this dd, than to be sick ourselves.

I hope you have a good support system. *sigh* Boy, life is tough sometimes. I will share with you a little trick that has helped me and my family when its hard to ask for help. When my sister (37 years old) was actively dying from cancer, my mom cared for her. We helped her a lot . . . but I knew she needed more help . . . its just hard to know where to jump in sometimes. So I hung a little clipboard from a cabinet in her kitchen and started a list. I told her to add any items she needed from the store, any chores she needed done around the house, etc. She was extremely reluctant to do this. I told her that when my brothers and other visitors came, they would begin checking the list, if they wanted to help. THEY DID!! They loved having a place to go and see what was needed . . . and it was amazing how much help mom had after that. Just a thought.

Chaya . . . I can't express how sad I feel for you. I just want to reach through this computer and hug you and your little ones.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/5/2008 7:58 PM (GMT -7)   
Chaya,
 
I'm so sorry you're all dealing with so much of this.  I know what you mean when you say "I do not understand how we just dont know more about the immune system when we have made such headway in diseases like Cancer."
 
I think the same things. Why are these autoimmune diseases not getting the same research dollars and attention? These are just as devastating to have as cancer.  There are cures for some cancer, yet AI diseases are not.  I don't understand it either....
 
I just want you to know I'm thinking of you all and hoping there is some relief in the future for everyone. Let us know how we can help you more okay,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 10/6/2008 12:35 PM (GMT -7)   
Ginny and Rosie,

The kind words go a long way. It is nice to be able to know that someone out there understands this disease and the impact on peoples lives. Thanks so much for responding to my post xoxox

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 10/6/2008 7:08 PM (GMT -7)   
I'm a so very sad for you Chaya. I do not have children, but my little brother was diagnosed with Crohn's and UC long before I was diagnosed. He had one of the worst cases they had ever seen at Oschner in New Orleans. It was so difficult watching him suffer. It broke my heart. I'm so sorry for you and your children. You are in my prayers. Judy

oldhippyrebel
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 10/6/2008 8:11 PM (GMT -7)   
Chanya, I really don't know how you do it. You must be a superwomen.Being sick your self and having to care for sick children too. You family is in my prayers.

Oldhippyrebel
Fibro since 97, Lupus since 99, neuropathy and other nerve damage.
On to many Meds to list, Finally got a date for SSA of July 1 after to many years of fighting for a hearing.


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 10/6/2008 9:25 PM (GMT -7)   
I wish I were super but not even close. I am exhausted majority of the time . Oldhippy I am learning as I go that life isnt what you ever expect it to be. I smile and grin my way through it or I tell a joke. I think that will be what I am known for most lol. Sarcasm when all else fails and a good laugh. My son has the same ability. My daughter not so much as she tends to melt and cry and not be able to find her way back up as easily. I have had times when I have had to walk between hospital rooms all night long to be there for both of my kids when things are bad. My son is immunosupressed and cant share a room with anyone according to hospital policy not even his sister. Usually by the time they get out I need to go in from running my body into the ground. This is the hardest thing life can hand you. Ill health and watching your kids suffer. We have lost much finanacially due to the rising health care costs and of course our wonderful Gov. is doing an awesome job of contributing to that but thats not a topic for this board. I still count myself fortunate that I am able to learn some lessons for what ever reason they are being taught . It sucks to feel this bad though. I find I am at peace when I am the sickest as odd as that sounds. The birds chirping are a blessing and things that are simple like the breeze blowing on my face. I love the smell of rain and the sound of peace and quiet. I have my grumpy times but if I let them prevail then I am miserable on top of being sick and I swear I actually feel sicker! As we speak I am on a steriod rush and cant flipping sleep to save my life. I am tired sooooo tired but my heart is beating away and I feel like I can stay awake all night. You know what this mean? I am gonna be too tired to function again tomorrow lol. This has to be a parody someone is watching on another planet devil . Good news????? I can take a deeper breath tonight without as much pain. yeah
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