hey my names lacey. im 19 and new to this

[lacey]

SO right now as I am experiencing an attack. I thought I'd try something new by writing out how I feel. I have the attack right now in my stomach. The pain is so bad all I wanna do is curl up in a fetal position and cry..but i know thats not good for me emotionally and hey it kinda hurts. Any advice?

[blessed365]

Girl we are the same age and experience the same thing. All I can say is hang in there. some say they really get sick when their swells other are different. I however don't have a BM for a while which makes it much worse in my case because then I am dealing with 2 problems....

Some says they go to the ER bc they get diarrhea so bad that they become dehydrated and while they are in there they also get pain meds.... I also cry when I have mine.  I  also look seven months pregnant....  which hurts me so much.. being a teen it makes it worse i think. What type do you have?

thinking and praying for you!

Casey

[Lisa Simmons]

I just try to do things to help distract me from what is going on. I like TV or my music and if you can be on the computer email and games can help. Really though i guess sleeping through the worst of it and just trying to stay rested and hydrated. I also get hot a lot so we tend to make it a bit cooler in the house for me. Im 17. Sorry you have swellings too.
Lisa

[lacey]

Im sorry to hear about you two having this crap too. Have any of you tried cinryze or any other drugs?

[blessed365]

Lacey,

I am on Danazol 200 mgs daily and just a week ago I got the Berinert infusions! They work amazing! If you can get it approved by your Dr. and it is the right meds for you I would highly recommend it for anyone.  The only thing you have to watch out for is knowing when to take the infusion before your attack gets to bad! I am one who kinda tries to take benadryl and sleep off my attacks. I have small attacks pretty often like facial swelling and so forth but I have MAJOR hospitalizations like once a month, although they have seen to calm down.  They are talking about maybe giving me one of two infusions a month just to try and prevent the swellings!

I hope you are swell free! Cant wait to hear from you soon!

[blessed365]

Lacey,

Have not heard from you just checking on you! Hope all is well and you are having a great Easter!

[lacey]

Sorry to not respond. i had an attack last night. it hit my foot this time. i got the cinryze administered to me at the hospital. It didnt work. my foot is still hugs and throbbing...

[blessed365]

I am so sry to hear this!! I will be praying for you! what type do u have? do u know?

[lacey]

i have no idea what type......

[blessed365]

But you have the blood work to show that your C1 levels are low correct?? Or was your Dr. like mine just placing all the pieces together saying you have some form of angioedema?

Hope your swelling is going down!!!

[lacey]

my c1 level is 1

[blessed365]

So you have type one!  That is very odd that the Berinert did not work then! But like I have told the dr.'s recently not never one follows the books and not everybody's body responses the same way to the same medication!  I hope everything works out for you!

Casey

[lacey]

do you take the infusions? do u have a port? of stick yourself everytime?

[blessed365]

Right now I take infusion PRN and have to be stuck every time!! But they are hoping to MB see about doing the infusions once or twice a month to help me out a lil more!

Right now i have to go to hospital to take the infusions bc we r still waiting on the nurse to come out and train us!

Hope ur swell free!

[lacey]

im waiting for insurance to get approved. im going to ask for a port though. id rather go through a minor surgery then have to prick myself all the freaking time.