Being Me...

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 days, but I try to take advantage of the good ones.  Like I have been told by people is that with what I deal with, it would not be good if I didn't feel down and if I didn't feel anger and emotion.  So I know that a lot of people that read this feel the same way, but try to hide emotions  and put on that brave face and go conquer the world.  Why do we hide our feelings and emotions, because we do not want to be stigmatized. 




All through the year, the oley website, is a wealth of knowledge from TPN to Tube feeds.  I personally have been dealing with PICC lines, central lines, peg tubes, an ostomy J tube, and a venting tube, since 2011, I was connected to the Oley foundation back in 2013.  I really wish that I had knew about this website at the beginning of my journey.  In all honesty the web site is so overwhelming, the amount of information it provides is endless.  People learn  in all different ways and I think the website does a great job of relaying information through multiple ways including videos, newsletters, personal stories and events throughout the year.  I have a hard time getting in touch with my doctor and even when I get the call back, I will get passed around before finally being connected to the correct person and sometimes by this time I am already on my way to the ER.  I also experience a lack of knowledge when it comes to TPN and different tubes, even in the ER.  However, now getting a chance to get used to the Oley website, it is incredible usually having some sort of information to anything I am dealing with, no matter how far outside the box it is.  The biggest challenge I have found is clogged tubes and how to unclog them without having to go to ER.  Last year, we found ourselves on vacation without finding out if I could go swimming or not.  I had texted my home nurses and the answers were not immediate, so I had remembered seeing a link on the website for swimming rules, so we checked that out and I was in the ocean before getting a return response.  The website is great but the conference is even better! Being altogether with people that you can probably learn from there story and maybe I could learn something from others experiences. The first conference I attended I was shocked to see how many people this event attracted and shocked at how much knowledge I gained.


It was two years ago, that Javier and I went to the cape  on a "vacation" to a medical conference.  I first heard about it from my dietician and after doing some research we decided that we may benefit from attending. It was put on by the Oley Foundation over a few days.  I was really hesitant at first because medical conference and vacation in my books did not correlate well.  But attending it turned out to be one  of the best decisions we had made.  I could be me, I was around of a lot of people like me.  I could walk around and not have to be so focused on if any of my "problems" would occur. I did not have to act different to fit in.  I walked around each day in my pajamas, my mask and my gloves, not feeling like I stuck out.  I didn't have to be so self conscious that one of my tubes may peek out. And I spent less time worrying about whether or not I was being stared at and , spend less time worrying one of my tubes leaked and whether that smell was coming from me. Being me and leaving my insecurities on the back burner allowed me the time and confidence to make connections and get the most out of the weekend as I could. We saw people with IV fluids hanging on hangers and people with backpacks with lines showing. Their were people from parents of young kids, to young kids, to people around my age, all the way up to elderly people. People all the way from Boston to California, and we even met a woman from Israel.  For some, like us, it was our first conference and for others they had been to multiple events.  I even met a man who said he had gone to almost all 50 states,  traveling to and attending conferences. We had planned to go to last years conference in Florida and I was looking forward to it but I had a very hard May last year and was not recovered enough to travel that far.  But we are planning on and looking forward to attending our second, but the 30th annual Oley conference in Saratoga springs, New York in June


Because of the length of this post, this is part one of two involving the Oley foundation.  In my next post I will share my personal story from the conference.  For now sharing my feelings from being me is OBSTACLE COMPLETED