Systemic Mastocytosis

2009-11-12T03:26:29Z

My name is Colleen (Mercier) Miller I am 40 years old married to the love of my life Shawn Miller, some of you might know us due to my husband has worked for towing company in the local area, we have 5 Children youngest is 8 years old, she is my joy! I have raised for 16 years my son Brandon who was born with many mental disabilities ADHD, Aspergers Austim, Bipolar, dyslexia and many others. My son Randy 18 and in the army reserves, good kid and Dylon my step-son . Tanya oldest has my grandaughter Hope . I am writing to every person that I can think of for help, I have recently been diagnosed with MASTOCYTOSIS, I have had many trips to the hospital by ambulance having anaphylactic shock symptoms, I can't breathe, My body is burning I turn red severe abdominal pain and almost pass out, joint pain is so bad I can barely get up and sleeping I'm up every 2 hours to take more pills just to go back to sleep for a little bit more. I went to every doctor I could think of and all I got from most of them was that anxiety was what was doing this! I finally ended up at an allergist and he discovered that this was not normal and had further testing done, after a Bone marrow biopsy It was discovered that I had spindle shaped mast cells in my marrow. I was and still am horrified, there is no cure, I cry everyday and try to get things in order should I die before a cure is found. I write goodbye letters to my children so they know how much I love them if God should take me away from them. I don't know what will happen to my son with all his needs if I am gone, he will not make it in our real world. This is a progressive disease and children sometimes outgrow it others don't and I am tired of seeing RIP with their childs name next to it. The adult form is not outgrown and we live in constant fear of when we will react or when this will turn aggressive and take us from organ failure, anaphylactic shock or turn to mast cell Lukemia / Mast cell Sarcoma which are both so far a death sentence. I can't afford all the over the counter medications that are no longer covered or are supplements that I require all day.... every 4 hours of everyday, Benadryl 6 to 8 times a day, zertec 2 x day, prilosec 2 x day, vit D, vit B, Melatonin, calcium 5 x day, Vit E 2x day, Garlic, green tea extract, aloe vera and those are just some of the ones not covered! I am begging you to please help raise awareness of this life altering, chronic, disabling disease and if there is anyway you can find it in your heart to help "The Mastocytosis Society" with funding to find a cure or http://www.yourcause.com/Cocoapuff68

. Please think of me and my family and how I can no longer even breathe between my tears because I know this will take me from them. I have battled my whole life just to get my son where he is today, Struggled my whole life just to get by and now I am facing this and I am horrified. I hope you can remember me... and what this Mastocytosis did to my family and friends. If you could even just forward this to anyone you know that

would raise awareness too...anyone can get this and I had never even heard of it before this, I have the indolent/MCAS form at this point which I was told is slow moving but even with this one I suffer greatly and was told I will be chronically ill for the rest of my life. ;(

Thank you from my heart!

Colleen Miller

Chelmsford, Ma. 01824

Cmercier6868@comcast.net

http://www.facebook.com/profile.php?id=1375871002

http://www.myspace.com/cocoapuff68

http://www.tmsforacure.org/

Camping is the life

2005-08-29T17:16:25Z

Well we went out camping with no children this weekend that was a blast. Forgot to feed squishy the beta so had to have liz go feed her and the dragon Nikko. We entered the poker tourney at the campground that was the balls all I can say is at least I didn't get booted out first lol. This weekend we take all the kids to the campsite guess I'm gonna need some extra marshmallows huh ? If you guys get this can ya let me know what Sillah had Boy/Girl??

Count down

2005-06-08T14:15:38Z

17 days until our Wedding Wow this is really a trip, I have missed you all and hope to see you soon.

Help Im Lost in Live journal?? lol

2004-08-17T02:39:23Z

Hello can you see me now?? I'm trying to find my friends narf lol where are you all??