LIVING LIFE ONE OBSTACLE AT A TIME

I woke up this morning wincing in pain, feeling sick and awful.  All I could think about was the party for my first nephew, Gio, today.  There was no way I was gonna miss his party.  So many parties and even good friends weddings, I have missed due to work or being sick in the hospital or in my bed. Tomorrow, I will be admitted for at least 3 days, so I was determined to celebrate and receive positive energy from friends and family today.  I got some medication and fell back to sleep, when I woke up I still didn't feel great but once my peanut (my niece) knew I was awake she came up to "play" and just seeing her in her party dress, a smile was instantly on my face.  At this point I decided I was going to this party, Li Li helped me with a fashion show to decide what I was gonna wear.  Yes a 3 year old picked out my dress today, solely based on the fact both mine and hers both had crinoline.   I cant even remember the last time ...

Once again sitting back in a waiting room, so many thoughts, feelings, and emotions were swarming around.  I remember an activity I use to do in a creative writing class.  The teacher would say, for the next minute, write down everything that comes to mind, no censoring, no right or wrong. I decided to do this exercise and here is the results: scared nervous un sure frustration anger why? when will we get answers is this seriously a hospital how can every dr. say something else when is this pain going to go away  can any one help me happy that Javier is with me oww Javi has a hard shoulder to lay on :) Wow amazing how much and how random your thoughts can be in just one minute of time. When the NP came in, she started asking how the procedures she thought I had went. At that point , the annoyance started setting in, I mean seriously how did she not know I didn't have any procedures done. As I started to explain to her ...

Wouldn't it be nice if we had the option to "take" the weekend off sometimes from our lives......? I know most people at some point would agree, and the people I am about to mention, i'm sure would even settle for just 1 day off from their current lives..... This came to mind from something one of my Dr, said: As we sat waiting to see my "heam" team ( Dana Farber hematology team) fingers crossed waiting to see results of lab work, to determine how long our day there would be, hoping for a short day, Javier agreeing hoping to enjoy some DF cafeteria breakfast, so many emotions were  going through my mind. This type of visit happens every 2 weeks, and with all the waiting time, it lets my mind go crazy. Every visit starts with a trip to the 2nd floor lab, no matter what time you get there, there always behind and usually very few vacant seats ( blood draw scheduled at 745 and they were already 25 minutes behind), sets the tone for the day. W...

So I have finally decided its time to share some of the things I have been going through. In no way is this meant for sympathy or attention, not sure I will have many following, but hoping to get some awareness out there. What most people don't know about me is how long I have been overcoming obstacles. They may ask what I am trying to get awareness for, a few different diseases and because of limited resources and research there are no correlations between, the individual diagnoses I have gotten.  So here they are hypogammaglobulinemia { say that 5 times fast, haha good luck}, gastroparesis, asthma and anemia.  Translate into a autoimmune/ immune deficiency, however we have been told by numerous doctors that there are so many, that  people will be treated but will never be given a actual name. A lot of the next information, is an overview of some of the things that have made me stronger.  A lot of the things I am going to mention next a lot of people w...