About this iReport
  • Not verified by CNN

  • Click to view Cocoapuff68's profile
    Posted January 22, 2014 by
    Chelmsford, Massachusetts
    This iReport is part of an assignment:
    Living with a rare disease?

    Today is a Day.

    This was a note about a random day, I have Rare illness called Mastocytosis. I could give you a list of all the horrible life threatening reactions to basically anything at anytime, but this was just me and my words. I have lost so much of me and I am just glad your interested in anything to do with the rare community. THANK YOU

    Today is a day!.

    July 23, 2010 at 3:00pm

    Today is a day! I have had a rough go of it for the past year or so..I was diagnosed last June with mastocytosis and boy did that SUCK!! let me tell you I cried for months, thought everyday was my last and wanted to walk in front of a bus...NOT KIDDING..many people stepped in and saved my life ..even though I didn't think I wanted it anymore. I was afraid that I would be a burden to everyone that I loved.Who would stay near a person who did nothing but talk about her illness ..all the time and cried every 10 minutes ..How would I wake up everyday knowing how that day would end? Why would anyone care about some chick from Massachusetts who had this rare disease? Well it has been a while since I updated my notes and thought today was a good time to do this. Over the past few months ..about 8 of them now I have been getting shots of Xolair every month. Xolair has helped me tremendously in the area of the reactions themselves..trust me it has not taken everything I still have to take many pills and medications a day, but it has kept me from going into full reactions and having to be in an ambulance every other day :)..My sister in law Claire had been sick for many years with cancer..it was very bad and started spreading very quickly..she came to my house when I was at my lowest and brought me a mug ..it said "Life's about how you handle plan B" this woman took the time out of her life..sick ..to bring me a mug and to tell me how she felt when she was diagnosed with Cancer..her words stuck in my head..No matter how hard illness is..you wake up everyday and find something that was good! The trees, your kids, the wind, rain or sun! Anything one thing that was good! To take that and be at your sickest points ..is very hard to understand! So I did that..not being able to breathe I would sit on my bed that they put in the living room for me..and look at my daughter sleeping ..and tell myself ..I get to see her today..that is good! I realize that every single one of us is going to die that is a fact..but I will find something everyday to see and feel..even the wind hitting my hand outside the car window while my husband drives..is so much sweeter now than ever before..To see the people I love everyday and let them know how much I love them and how proud of them I am! ..I have this day...I don't look to the what if's until they get here now..I look at today and taking in everything around me..Don't get me wrong I still have really bad days and the depression still wins..but I take things as they come and hope that I get as much time as I can with everyone I love..I wouldn't want to miss one minute of the time we are given..every life is precious and no one knows what will happen tomorrow..us MastoMinds..just get a different level of what life is ..we get a heads up on how precious feeling good is and how to limit ourselves and take things slower..We get emotions that some people never find in their lives ..the caring so much about our families that we grieve for months about the what if's before we see the here today!! I found out who my real friends where and who wouldn't be able to handle this ..I must say that I have a great bunch of family and friends who are here to see me through everything..they have all learned what masto is for the most part ..they all know when to get me out of the heat, when to make me stop doing things and if Cocoa should hit the floor her Epi pens in the bag! :) I love them girls!! Pictures are everything ..they can record some of the moments at your worst time and some of the most amazing memories ever!! I found that people do care..they don't mind if I cry for hours..they know that I will be ok in a lil bit and that being sad is ok..we have a right to cry..but if I had taken my life last year to avoid suffering and pain, I would not have been here to see what I see today..all my nieces and nephew growing up..My best friend marry, my husbands brother!! they are so cute together..My husband & kids everyday!! The Fundraiser that we all put together and raised $3,600.00 for research...I am not a burden, I am a person and sometimes I need a little extra help when I am not feeling well..but I can do something..Raise awareness so that others who get this don't feel so alone and in the dark like I did! I want everyone to see that I got to a place that is ok today ..I may be in a place that is not so good tomorrow but at least ..I can say I am here!!!! I love you all and will always be "Praying for an Angel, Hoping for a Cure"!
    Add your Story Add your Story