LIVING LIFE ONE OBSTACLE AT A TIME

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 ...