Urticaria Pigmentosa

So I havent talked about it on here mucj but Olivia has a skin condtion called Urticaria Pigmentosa or UP. Its a pediatric form of Mastocytosis. It is a none contagious skin disease. They do not have a cure for it nor do they know how or why it happens. There are too many inflammatory cells (mast cells) in her skin. The main symptom are brown spots on the skin which can become red and inflamed with rubbing... heat... cold... stress.. foods... etc... The spot can look much like a hive. It scratched it can become a fluid filled blister. It goes away by puberty in about half of the cases...

It really breaks my heart for my beautiful little girl.. Luckily most of Livs are on her tummy and back... This is her back after a bath.. the water irritates it a bit. This was a few months ago.. She has gotten more spots recently.

She has a few spots on her face but they arent nearly as bad as the ones on her back. They stay this color unless she gets really hot (like sometimes when she sleeps on my arm...) then they turn redish. Her back rarely looks this good due to clothing rubbing on it nearly all the time.Today she had her first bad reaction to the sun... Its the first time I thought they where going to blister...
I'm so nervous for when she starts school... Kids can be so mean when they find something a little different in a peer... We just have to teach her to love her polka dots and hope they find a way to help her ... and pray that they do fade for her...

Good video explanation

Somber Day...

Well the weather in Dover today reflects the bases mood I think... Its over cast... light breeze... not raining thankfully (for the families) but that would be appropriate.... The more I try to block out these emotions the harder they seem to hit... I don't know why I think I need to block them out but that's the only way I know how to deal...

Reasons like this make me so happy that Carl choose the job he did... At least I dont have to worry about him being outside of the base... Being in a helicopter... Being in a convoy.. I know if they needed him he would go in a heartbeat, but on the norm he will always be on base... I know bases get attacked but it seems (and maybe I'm naive) that not many are killed or badly injured on base. Thank God for small miracles right?

My heart aches for these families.. I cant fathom what they are feeling... I hope that at some point they are able to find peace in the thought that their sons and daughters are true heros and that people truly are thankful for the great sacrifice they have made... The ultimate sacrifice..

I hope people give them time to heal... I do know how it feels to be rushed into feeling better and it only makes it worse... It angers me with the media filming their every viewable move... I dont feel that the nation has the right to see this... Its family time. If your child or spouse died would you want to be watched as you grieved? 19 of the 30 families did not want the media there... (stated here)

My heart just skipped a beat and knees went weak... The helicopters just flew over to bring the generals in to do the Dignified Transfers... My heart truly aches right now.... For these families that I don't know...

Baby Blues

I never believed in postpartum depression... I always thought it was just women being whiny and seeking attention... But its a very real and almost scary thing.. Its so hard to understand I don't think I had a post postpartum but I do know I had the "baby blues". I felt like I was on a tight rope.. I'd go days without talking to anyone but Carl and the girls..How could I be sad when I had two healthy beautiful girls.. a husband that despite our troubles I loved with all my soul and who loved me with his whole heart... We had food in the pantry.. a roof over our head.. But most days I was so sad. And then I would get MAD. How the hell was I to be sad with everything I had?? What kind of selfish person was I? I felt like I didn't deserve any of it..Then I would get scared. What if I was just a crazy person and snapped one day?? (DISCLAIMER before someone calls CPS on me.. I have NEVER felt the need or urge to hurt my children nor have I ever harmed them.. I know I have people if I get stressed and need a break) I could feel myself getting frazzled far too easily. Things that use to not bug me would happen and I would literally have to grit my teeth. So many days and nights I just felt the NEED to cry.. Like I had a back up of tears. And I was so confused because I didn't understand why I felt this way.

But like all things it passed.. But the embarrassment lingers .. I really feel embarrassed to have felt all this. I love my girls with all my heart. I cant imagine a day without them. And Carl... if it wasn't for him I wouldn't have made it through those rough months.. I don't think he knows how much he really helped me. And now that I'm on my own and doing well its a challenge of discovering who I am and who I want to be... Because it changes you.