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How much....

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Please support me in raising awareness for the Oley foundation, I have set 2 goals for the walk-a-thon: To raise a minimum of $500 Be able to walk rather then Javier having to push me in my wheelchair As most of you know I have been dependent on IV and Tube feedings since 2011 as a result of an undiagnosed immune/ auto immune deficiency.  I receive home healthcare and in 2013 I received knowledge of the Oley foundation and since it has been my go to page with any questions regarding my tubes and/ or nutrition. They are a non-profit organization that provides free information to help people who are dependent on IV or tubes live a more "normal" life.  It has truly been a rough couple of years both physically and mentally. A lot of people look at the box but not in the box, people like to visually see a smile and a smile means happiness, but in a lot of cases that is not the truth.  There have been plenty of times that no matter how I feel...
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SURPRISE

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  So yesterday, a dana farber Wednesday started off as a typical dana farber Wednesday, a ton of traffic, a lot of attitudes, great people watching, and unfortunately a lot of appointments.  The different part was that the hospital went live on EPIC, still after being at the hospital for over 6 hours I still have no idea what EPIC means, besides new computer systems and large groups of people wearing blue vests that said "EPIC" congregating throughout the hallways of the Brigham and Dana.  As an outsider looking in there appeared to be a great deal of confusion and poor training.  We were running late to the first appointment so we went to the lab at DF before heading over to the  appointment at Brigham, however because of the time crunch the lab actually took us early. SURPRISE HAHA not the big surprise though, guess you got to keep reading:)   We really didn't notice anything different at the lab...
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Being the real me...

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PART 2 OF BEING ME Please remember that this part is a reflection of my experience so it can't really be right or wrong.  However feel free to ask questions or even share your experience, who knows, maybe you too were at the conference, but it was so crowded we may never have passed paths. As we prepare to attend the next Oley foundation conference this June, in Saratoga Springs New York, I came across some interesting information that made me go into reflection mode. When we attended the conference one of the people we came across was a guy from California, and he had been writing a newsletter called The Sweet TPN times.  He shared his personal story and spoke a little about the newsletter. He wanted me to become a reader and even share my story.  He said he wanted to send me a few issues in the mail to check out.  A couple weeks after the event, I was surprised to receive a large package and in it was many issues, roughly 100 pages ,so...
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Being Me...

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Do not be embarrassed, the feelings and emotions and reactions you have or have had are "normal."  I have written a lot about the physical side of my illness, the common symptoms, and it seems to me from what I see and what I hear,  most complaints, symptoms, and questions, come from the physical side first. Most people, like myself, do not share about the psychological side of things.  Yeah, some mornings I wake up, and throw my blanket back over my head and pretend im not there, not wanting to deal with what the day may bring. Sometimes I wish I could switch bodies with some one else for a day, some times I want to go on vacation and other times I may feel like I want to go on vacation from myself.  Other days I wake up feeling so energetic and ready to go , when I get those days, I need to take advantage of them fast.  Like I respond to any one who asks me how are you, my response I get good days and I get bad day...
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No question is bad question,,,,,,,,

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I remember the teachers were always saying that and now I hear it all the time, no question is a bad question, chances are somebody else is wondering the same thing. So the idea for my last post was suggested by a friend and although I was hesitant to do it because my ultimate goal is to spread awareness not gain sympathy.  However, I feel that this last post really opened me up, I shared a lot of things I have never shared. Although I have not gotten any feedback on my blog I know it was read.  So this next idea came from one of my drs.at my last visit, feeling hesitant again but really hoping since I have put a lot out there since I started my blog, I'm sure people have questions.  The idea is to reach out to my readers and answer those questions.  So starting on this blog, I will take 5 questions a week.  Your questions will be answered on the weekend, so for this week ask your questions on the comment section and I will an...
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A dedicated week

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Sorry that I have been a little slacking  This article is a little late due to a very lengthy hospital stay. And so I have taken this moment to educate a little further into tube feeding. Recently I have been having a hard time with my thoughts and feelings and where to go next with this blog, I have had a few people suggest I talk about a typical day for me.  From the moment I wake up to the moment I go to bed.  My main concern with this idea, is that from the beginning I have said this blog is not for sympathy and/ or  attention for me, it is meant to spread awareness to others who may have gone through tube feeding, in the past, present or for anyone else that may want to learn more.  I have found a vessel, that can be used to talk about my life and a typical day for a "tubie." When you think of February 8-14, does it mean anything to you?  To most people it is just a regular week ending with the hallmark holiday ...
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The best present

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As A child growing up I remember being asked multiple times, "what do u want for your birthday?" and "what do you want for Xmas?"  Because my birthday is 8 days before Xmas, as I got older, the question pretty much became "what do u want for your birthday and Xmas?"  When your younger these questions are quite simple, you have your list to Santa, you have the big toy book, and the endless commercials.  However as you get older the answer to these questions get more difficult, you don't want to be rude and say money or gift card, so my answer always is either I don't need anything, or I don't know.  I have never really liked getting gifts and I still don't, I appreciate them and all the thought that goes into them however I don't need anything.  I do enjoy giving presents though, and in the past I have given some pretty great gifts.  When you were younger you always enjoyed getting toys and playing with them and then you would get bored ...
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