Feeling so blue...How to live with DD's chronic illness?

[Anonymous]

We have been in a similar situation. One book I read early on when I realized that this condition may not go away was "Conquering your child's chronic pain" by Lonnie Zeltzer who runs a pediatric pain clinic. It doesn't have magic answers, but some good perspective and some good questions to ask yourself in the book. A lot of stories with GI issues - too. Book was a wake up call for me on sibling issues and also how to help DC move forward. We also have an unusual condition - but if the conditions that are close enough to it, I read a lot- because I learn how people cope, their strategies for daily family/school life or even stuff like what to ask for in IEP, etc.. I hear you - I often mourn our old life. And something as simple as going to get ice cream as a family - especially in the summer is hard. I also found that I learned from a friend to embrace the new normal, but fight hard for the best chance going forward.

Wishing you and your family the best.

[Anonymous]

Thanks for the pain book!

[Anonymous]

A friend of a friend in Baltimore is a licensed acupuncturist and licensed chinese herbalist. She is caring, warm, and understanding and would work in tandem with traditional medicine (has even made recommendations of good doctors for us to see with my special needs child). I believe she also takes insurance.

Janice Campbell is her name.

http://www.movingqi.com/index.html

[Anonymous]

My son was really sick for a long long time (he's better now). It was so depressing and lonely. Stuck at home, no one understanding, and so much medical equipment it took two of us to get him out of the house. Our problems were different than yours.

I stopped thinking about all the things we couldn't do and starting thinking about the things we could do.

We went on vacation. We rented a house on a lake (Deep Creek in MD). I went for walks. We took nurses with us to weddings so we could all go and there was someone to help.

Do not keep your younger child locked in the house. You are a family unit, but you each have your own lives. Both children need to support the other child in their lives - whatever they are. You support your family of course - but you have to live your life too. She shouldn't miss out because older DD is.

My son was in the hospital for months on end, but we still participated in our other child's school events, sports ect. They both deserved our time.

You'll figure it out.

Also - what about having someone come to the house for activities? private lessons in piano, a language or whatever she likes .. . It something to do!

I am sorry you are going through this. My son's illness was changed our whole lives. He is healthier now, and hard to tell what he's been though, but it is still a recovery. We lost friends and jobs. It is a long road back.

[Anonymous]

I'm so sorry - I have no advice. Just thinking of you op!

[Anonymous]

I feel for you, op. But I also feel for your younger kid too hope you all can have some fun this summer!