Still searching for the zebras...
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 or shell" I have makes it very hard for people to help and or relate.
How well do you really know me?
The diagnosis I was given, was IDIOPATHIC GASTROPARESIS.
IDIOPATHIC GASTROPARESIS is a disease in which delayed gastric emptying from an unknown cause. Simply put, the muscles in the abdomen stop working, therefore food intake cannot be moved along in a timely manner. There are two main types of gastoparesis (GP), diabetic and idiopathic. It is said that diabetic GP can be treated but no cure. What actually causes idiopathic GP, is not completely known. There are a few rare causes of GP, including metabolic, genetic and inflammation within nerves. The most common causes of non diabetic GP are surgeries and viruses. With idiopathic GP, with the aide of some medications and time, most of the cases will clear up within 3-5 years of onset, without reoccurrences.
We have been able to track back to where we believe I got GP. From what we have concluded is that we are currently coming to the end of the 5 year window. There are just things and certain people, that you remember for specific reasons. They may seem like the most trivial or un important details, but sometimes those little details are important to remember the big picture. So the little details bring it back to 2009, I recall collapsing at work, paramedics took me to Beverly hospital where I remained admitted for 7 days. In those 7 days, I was being treated for a bronchial infection and what we now know was a stomach bug. I remember because I had a very inspirational nurse, as she had only 1 arm, however she was amazing. I remember her asking me, what will you eat, that last yummy meal, was chicken fingers and French fries. My troubles started shortly after that hospitalization. From research and what we now know, is that because I'm immunodeficient my body was not able to fight off both infections. The stomach virus more than likely was the cause of the GP.
GP is very under researched, and most doctors don't know much. There are tests they can do to diagnose delayed emptying, there are a handful of meds they can try, and there are some experimental treatments, however conclusions and prognosis's are hard to come by.
So as I continue my search for the zebras, I will continue explaining and putting awareness out there.
THE HARDEST OBSTACLES OF MY LIFE HAVE JUST BEGUN
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 or shell" I have makes it very hard for people to help and or relate.
How well do you really know me?
- I have idiopathic gastroparesis, which is delayed emptying of the stomach, from an "unknown cause" ( will explain)
- The outside of my belly has a lot of "real estate", a J tube, a G tube and a very large scar that runs right through "my belly button", originally housing 18 staples, but now it is a very long scar, except it still is a large hole at the top. (will explain)
- I have a stoma, yes disgusting, my nieces tell me everyday, "auntie, ewww, you smell"
- I have so many bruises, you could connect the dots
- My blood counts, iron counts and platelet counts, drop consistently
- I have a double lumen central line, below my right collar bone, used for weekly blood draw and nutrition. I have also had multiple PICC lines ( arms), hickman on the other collar bone, and also a port. I have gotten life threatening infections and blood clots from each.
- I get 100% of my nutrition from TPN (will explain) and IV fluids
- I do not eat or drink enough to rely on "adult food"
- I cannot even take my medicines by mouth.
- I live in daily constant pain, AKA "invisible pain" ( will explain)
- I am a cheap date:)
IDIOPATHIC GASTROPARESIS is a disease in which delayed gastric emptying from an unknown cause. Simply put, the muscles in the abdomen stop working, therefore food intake cannot be moved along in a timely manner. There are two main types of gastoparesis (GP), diabetic and idiopathic. It is said that diabetic GP can be treated but no cure. What actually causes idiopathic GP, is not completely known. There are a few rare causes of GP, including metabolic, genetic and inflammation within nerves. The most common causes of non diabetic GP are surgeries and viruses. With idiopathic GP, with the aide of some medications and time, most of the cases will clear up within 3-5 years of onset, without reoccurrences.
We have been able to track back to where we believe I got GP. From what we have concluded is that we are currently coming to the end of the 5 year window. There are just things and certain people, that you remember for specific reasons. They may seem like the most trivial or un important details, but sometimes those little details are important to remember the big picture. So the little details bring it back to 2009, I recall collapsing at work, paramedics took me to Beverly hospital where I remained admitted for 7 days. In those 7 days, I was being treated for a bronchial infection and what we now know was a stomach bug. I remember because I had a very inspirational nurse, as she had only 1 arm, however she was amazing. I remember her asking me, what will you eat, that last yummy meal, was chicken fingers and French fries. My troubles started shortly after that hospitalization. From research and what we now know, is that because I'm immunodeficient my body was not able to fight off both infections. The stomach virus more than likely was the cause of the GP.
GP is very under researched, and most doctors don't know much. There are tests they can do to diagnose delayed emptying, there are a handful of meds they can try, and there are some experimental treatments, however conclusions and prognosis's are hard to come by.
So as I continue my search for the zebras, I will continue explaining and putting awareness out there.
THE HARDEST OBSTACLES OF MY LIFE HAVE JUST BEGUN
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