some days i just want to cry
this whole ITP thing with ashley has turned my normal world upside down. i know it will get better but knowing that she will always have this DOES not make it any easier. YAH she can go into remission but it that is exactly what that means REMISSION=NOT GONE FROM HER BODY. it can always come back and KILL her OR cause her to have to deal with CRAP that i AS her mother DO NOT want her to deal with. i don't want her to have to go in for weekly, biweekly or monthly treatments, for that matter i don't want the FEAR of it coming back if she is in remission. I JUST WANT TO SCREAM. WHAT THE FUCK DID WE EVER DO TO DESERVE THIS SHIT?
okay granted it could be alot worse, IT COULD BE CANCER, but so far that we know thankfully it isn't, not that it still doesn't cross my mind because we are sooo newly diagnosed and have never seen a hemo. now i know that since she responded soo AWESOMELY to the IVIG that that means that it is in fact ITP but as a parent i sometimes wonder. I HATE THIS.............the fear, the worry the wondering what will come next. will she go into remission? or will she plummet 2 months, 4 months or 2 yrs down the road? will she die from this?
these are things that i am thinkin CONTINUOUSLY and i swear in my head i am going insane and so is jason. last night we were both up more then half the night worrying all because ashley had off and on again little bloody nose for the last three days. well she never had a bloody nose before this WHOLE ITP crap. soooo we were scared, now granted it wasn't like it was when she was diagnosed with ITP but never the less it scared us. soooo i didn't get to sleep till after midnight, if you want to call that sleep and jason was still awake after one am, how do i know? well i was half awake and every time he moved i opened my eyes and saw him awake. all over a stupid ASS bloody nose that turned out to be caused by allergies. ohh how do i know? well i took her in today after talking to her doc and her platelet count was at 353K. sooooo all that worry and stress for nothing WHICH I AM THANKFUL FOR, but my fear is that i will get LAX in this whole thing and then she DROPS BIG and i lose her to an uncontrollable bleed. have i said that I HATE THIS? because i do.
i don't want to get lazy in looking for signs and symptoms but at the same time it is soooo draining LOOKING for signs and symptoms. I SWEAR I AM GOING NUTS, NUTS I TELL YOU.
okay granted it could be alot worse, IT COULD BE CANCER, but so far that we know thankfully it isn't, not that it still doesn't cross my mind because we are sooo newly diagnosed and have never seen a hemo. now i know that since she responded soo AWESOMELY to the IVIG that that means that it is in fact ITP but as a parent i sometimes wonder. I HATE THIS.............the fear, the worry the wondering what will come next. will she go into remission? or will she plummet 2 months, 4 months or 2 yrs down the road? will she die from this?
these are things that i am thinkin CONTINUOUSLY and i swear in my head i am going insane and so is jason. last night we were both up more then half the night worrying all because ashley had off and on again little bloody nose for the last three days. well she never had a bloody nose before this WHOLE ITP crap. soooo we were scared, now granted it wasn't like it was when she was diagnosed with ITP but never the less it scared us. soooo i didn't get to sleep till after midnight, if you want to call that sleep and jason was still awake after one am, how do i know? well i was half awake and every time he moved i opened my eyes and saw him awake. all over a stupid ASS bloody nose that turned out to be caused by allergies. ohh how do i know? well i took her in today after talking to her doc and her platelet count was at 353K. sooooo all that worry and stress for nothing WHICH I AM THANKFUL FOR, but my fear is that i will get LAX in this whole thing and then she DROPS BIG and i lose her to an uncontrollable bleed. have i said that I HATE THIS? because i do.
i don't want to get lazy in looking for signs and symptoms but at the same time it is soooo draining LOOKING for signs and symptoms. I SWEAR I AM GOING NUTS, NUTS I TELL YOU.
posted by christina at 7:17 PM
3 Comments:
Christina, I couldn't even imagine the fears and worry you and Jason are feeling right now.
I am sending prayers to Ashley and your family at this time of need.
Christina. I cannot imagine the fears, anger and frustrations and worries you are going through right now. YOU have my prayers. HUGS....
Christina I can't imagine what your family goes through with worry! But, know my heart and prayers are with you! Love you gal!
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