LIVING LIFE ONE OBSTACLE AT A TIME

Most people who know me and what I have been going through probably think I don't have much to be thankful for, however, I have and always have loved the holidays.  I love thanksgiving, turkey, stuffing, cranberry sauce, doesn't get much better then that.  My favorite food of all time is stuffing and leftover thanksgiving sandwich, yummy.  Those of you that follow me obviously know that I wont be eating a thanksgiving meal, however my family will be.  Really its not about the food, its all about family time and reflection time. Time for people to think about what they have and be grateful for it. Also remembering those that you may have lost, giving thanks that they are no longer in pain and thankful that you have someone special looking down on you.  We should be thankful and grateful everyday but on thanksgiving it elevates and makes people think deeper, well at least it does for me. A tradition in my family, as far back as I can remember...

So what to do when your fiancé is so exhausted from work and such he passed out on the floor and was asleep in less then 30 seconds, and me exhausted from battling this flare-up, but after multiple tries and treatments nap is a big negative, so perfect time to post. After a very long day, I am drained both physically and mentally, so I have decided to take a little road block, sending us back a little ways.  Back to before I had NG tubes, G and J tubes, back to before when I could eat real food and not rely on TPN( IV nutrition), back to when I could be an athlete, back to when I could be a college student and party without the fear that one sip of alcohol could kill me now because of one of my meds, back to when I was "normal" whatever that means. So I challenge you...... If you woke up tomorrow morning and found out you could no longer eat real food, what foods would you miss the most??  What restaurant would you miss most? If you wok...

I AM A BOSTON SPORTS FAN!! I love baseball season, the red sox and who ever is playing the Yankees get my vote, I love going to Fenway, whether it is to watch a game, take a tour or even to attend a wedding expo.  I love football, college, NFL or even the women's league, I love the patriots, and who ever is playing against Peyton Manning, gets my vote.  I also love soccer, and even though I was never a great soccer player or even athlete like my siblings, it has been in my life for as long as I can remember.  I do enjoy watching soccer on TV, however I sometimes feel that the MLS is a little boring because it is pretty slow paced compared to the European leagues and the world cup. I love both women and men soccer however over the years I have really fallen back in love watching the women teams play.  I grew up as Mia Hamm and Brandi Chastain being mentors, and watching the Olympics.    I love going to Gillette stadium whether its to watch the...

I know I grew up being told no question is a stupid question, however I am definitely beginning to discredit that theory. So today started as a typical Brigham/Dana Wednesday.  Horrible long drive in, due to stupid mass holes and the rain, but we got there.  Finished appointment at Brigham and headed over to Dana to start the rest of the day.  We arrived at the lab at 10:10 for a 10:30 appointment only to be told that they were 30 minutes behind based on your draw time.  So we quickly learned that it does not matter if you are early on time or late to the lab, regardless you get penalized.  By the time blood was drawn, a quick lunch for Javi and a quick trip to the Alex and Ani positive energy table for me,(fell in love with a bracelet) and then back upstairs to another typical over filled waiting room.  When vitals and what not were finally done and there was a empty room it was well over the time of my appointment.  We met with the N...

Dana Farber Wednesdays are never the same.  It always sets off a whirlwind of emotions and sends me into reflection mode.  There is a lot of wait time involved and having to go so often you start to blend in and it almost becomes second nature to you.  You see a lot of the same patients each time, and it can be very emotional because one week you may see this women dressed in pink, smiling, walking around and being social and the next time you see the same women dressed all in pink, instead of smiling you can see the face of pain and instead of walking around you see her masked, gloved and curled up in a wheelchair covered with a blanket.  Cancer and other diseases can move so fast or so slow but regardless emotions can go wild. Sometimes I really have to remind myself to stop putting pity on myself because no matter what I am going through, what pain I am dealing with, there are other people that are much worse off then me.  I have to remind myself to get ba...

I have been contemplating since my last post as to where I should go now   I have decided that I am going to talk about the pain that I deal with every day of my life for the last 10 years, gradually getting worst.  The hardest part of having pain is to get to the root of it, and the biggest part of that is finding the correct dr. and to understand that in some cases it may take multiple drs. before you get answers.   The hardest part with pain is to get people to believe you.  I have gastroparesis, not a broken arm or a large cut, you can not physically see my pain.  The biggest myth about pain, is if you cant see it, it must not be real.  Trust me when I say there are a lot more people then you could imagine that live on a daily basis with pain.  A lot of people will give up before they can get answers.  A lot of times you may be viewed as a pain med seeker, attention seeker, or even psychotic. However, the most imp...

Fair warning>>>> this is a very long post.  Also this is my point of view, and I understand that some people may think or believe differently, or may have a comment or question. Just to reiterate as I have said from the beginning this blog is not for sympathy it is for awareness. And please remember comments and opinions are welcome, I just ask please no bashing people for what they might write and believe.  So the literal definition of this phrase is exactly how it sounds, "don't judge a book by the cover."  Remembering back to when I was younger shopping at a book store and I know at that time I purchased books based on what the cover looked like and whether or not it had pictures.  As I got older, and even now, the books I purchase are based on the title, and the back summary and other peoples reviews. You may walk into a store and see something on a hanger, and it can go either one or two ways, you could j...

wow I have a lot to say, just from the last couple of days alone.  However just sitting up enough to type this is draining all of my limited energy.  So quick update, hoping to just get better from now.  Currently fighting a very bad staph infection from a clot in my central line.  Finally no temp for the first time since Monday, as high as 104.  So I am still fighting as hard as I can, working on physical strength but mentally I am strong! So bedtime for me and javi, hopefully a few more updates soon!!

The first thing that comes to peoples minds when they see the words "real estate", is property, more then likely housing and land.  When I refer to my "real estate" I am too referring to property, but I am talking about the different spots of my belly and what each one houses.  Recently, it is getting quite crowded, and unfortunately I can't just put up a "for sale" sign As most of you know, I am a very private person and most people don't know what my belly looks like.  I am not going to censor or leave out details, that may be seen as gross, this is what I live with everyday.  Again this is for awareness, so please do not be afraid to comment or ask questions. At this point, I do not receive my nutrition or medications by mouth.  Because my stomach muscles do not contract, anything I take in by mouth comes back up or sits in the stomach.  Nothing that ends up in the stomach absorbs. Starting in the center, right through my belly button I hav...

Still searching for the zebras, searching outside the box, outside of the many diagnosis, day by day.  Searching the web, searching within, searching to find a dr. that will look for zebras, that doctor that is willing to go that extra step, that dr. that is willing to go outside of the "scientific" answers to find a different solution, a different diagnosis. As the job of the dr., there position is to find and make the diagnosis, as the patient my job is to keep an open mind, be strong and persistent and trust.  As the years have gone on, I have come to see that one of the most important things is the patient doctor relationship, there has to be trust from both sides.  The large wall I have built around me, does pose a lot of potential issues.  The wall is the psychological side of the illness, although I have always had a trust issue, as I got sicker, the emotions that I feel, right or wrong, have attached to the wall and made it quite larger.  This "shield o...

So I have never been a really religious or very spiritual person, I do however believe in fate and everything happens for a reason.  I have never been a very superstitious person, and do not believe in mediums and card readers.  However, at some point way back, I must have signed up for the free daily horoscope  emails from astrocenter.com and sometimes by accident or not, I may read a few or so and since this mornings was so on, I have decided to share it... I am a Sagittarius: "inspiration from recent religious and spiritual occurrences could have you writing down accounts of your experiences, perhaps with the idea of someday publishing them.  Your concentration could be well be intense, as writing for you today may not only be creative, but therapeutic as well.  It'll also help to attend classes or workshops or simply to discuss the subject with a friend.  Knowledge is essential now." I am having such a hard time today, posting something tha...

Ok so I'm assuming by now everybody interested has taken the challenge of saying HYPOGAMMAGLOBULINEMIA 5 times fast.  If you successfully completed that, new challenge spell it, without the use of the internet. Clue: it has 21 letters, and it all relies on the correct pronunciation to break down syllables. I have been dealing with this disease for quite some time and even I can't spell it correctly. When I am being asked about my history and I mention it, even in the medical profession I am asked to spell it and even sometimes asked what it is.  In reality the definition is quite simple, a type of primary immune deficiency disease, however the simplicity stops there. This is a generalized diagnosis and many different diseases fit under, and since there are so many immune and auto immune diseases, patients may never get that actual diagnosis.  There are two types, transient and genetic, and earlier the diagnosis the better long ...

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...