"what doesnt kill you makes you stronger"
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 will not understand but everything will be further explained in future posts.
I have cheated death so many times, many times even doctors were surprised how strong and strong willed I am, a fighter. Infections, fevers as high as 105.7, delerium, hallucinations, wrapped in ice blankets, blood clots, on and off of blood thinners, self injections, spinal taps, severe anemia, bone marrow biopsies, too many different tests to count, multiple surgeries, many tubes, completely relying on TPN for all nutrition, medications given through a tube, constant nauseas that prevents me from enjoying anything by mouth. So many hospitalizations, multiple hospitals, multiple ambulance rides, multiple 911 calls, in and out of ICU, on first name basis with EMTs, paramedics, nurses and doctors.
I know this sounds like a lot of fun :] but this is my reality, but I feel that I have 2 options, I can either get stronger and stronger or I can give up and let it kill me. I have decided
"what doesn't kill me makes ME stronger"
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 will not understand but everything will be further explained in future posts.
I have cheated death so many times, many times even doctors were surprised how strong and strong willed I am, a fighter. Infections, fevers as high as 105.7, delerium, hallucinations, wrapped in ice blankets, blood clots, on and off of blood thinners, self injections, spinal taps, severe anemia, bone marrow biopsies, too many different tests to count, multiple surgeries, many tubes, completely relying on TPN for all nutrition, medications given through a tube, constant nauseas that prevents me from enjoying anything by mouth. So many hospitalizations, multiple hospitals, multiple ambulance rides, multiple 911 calls, in and out of ICU, on first name basis with EMTs, paramedics, nurses and doctors.
I know this sounds like a lot of fun :] but this is my reality, but I feel that I have 2 options, I can either get stronger and stronger or I can give up and let it kill me. I have decided
"what doesn't kill me makes ME stronger"
Did you get a chance to look into the new rare disease clinic at the Brigham?
ReplyDeleteWe have researched it! Also got a few names of Drs. to try outside of the Brigham network.
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