Daughters new diagnosis

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.

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'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

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 . Good news????? I can take a deeper breath tonight without as much pain.