Hello Again, I know that it has been a while since I last posted, but things have been a bit crazy in my world. Jenna's panniculitis issue has not been resolved. She has been having a difficult time with this issue. I can't believe that it was a year ago that all of this started. She now has about 16 panniculitis spots, and lipodystrophy has started in some of the larger ones. It is so sad to see her in pain. I would do anything to take it away from her. We have started a more aggressive treatment with the hopes that it will help and solve this problem. She is now taking cyclosporine 2 times a day and they have increased her IV solumedrol to every week. She is still getting the IVIG every three weeks.
When I sit and think about how long she has been dealing with all of these issues it breaks my heart...she has spent her childhood in and out of the hospital for the past 6 years. I sometimes wonder what my life would be like without this illness? There are so many things that I wanted to do. Please don't mistake this as me being selfish because that is the last thing that I am. I will always put others before me...sick or not! There are just so many adjustments that have to be made when you have a child that is sick. I sometimes feel like I am alone with the pain & hurt that I feel, but I know that is not the case because I have so many people that care about me and my family. It's just they really don't know how I hurt or what I feel inside. I feel dead inside at times and it takes everything that I have to get myself going. It is because of my kids that I keep going. I want so much for them in life. I want them to be happy and healthy and reach for the stars because nothing is impossible.
I am greatful for everything in my life I just want Jenna to be better. I want her to be able to run and play without pain. I want her to feel comfortable with herself. My kids are the best thing in my life!!! These next 8 weeks are going to be rough for Jenna and I give her so much credit she has been so strong through all of this. I am so proud of her for the way that she has been dealing with everything that she has been going through. I really think that she will be better off once the port is put in next week, it is just that I didn't want it to come to this. I will keep you all posted. Thank you for all the love and support that you give to me and my family.
I think that every parent that has a child with a chronic (or otherwise serious) disease totally understands how you feel. My daughter was diagnosed with her first form of arthritis over 3 years ago; including her JDM she's up to 5 types. I still do a lot of crying for her. It makes me so angry that she has to be puffed up on the steroids, that we have to worry about her jumping & breaking a bone... It just isn't right.
ReplyDeleteI can't believe how much Dr. N is doing for you. If he had done anything at all right for us we would have stayed. I'm very happy to see that he is taking care of Jenna. I'm stunned, really. I hope that the new med changes really kick in & start to help. I think about you & Jenna often, actually. I keep you in my prayers.