Blow by Blow
I often think of my younger self... The little girl who couldn't even face to visit my sister in the hospital when she had her tonsils out. I was terrified of hospitals and pretty certain in my little messed up head, that she was facing imminent death. I just knew the following week, I would be attending her funeral. I hated the fact that people got sick and had no tolerance for hospitals. Obviously, she didn't die from a tonsillectomy!
Had I been told back then, that I would be doing what I do now, there is no way I would have believed you and more than likely, it would have made me think twice about starting a family...let alone get married. But, I'm glad I had my children. I wouldn't go back and change that, but still, there is no way I would have been able to believe that living a life like this was possible.
There are some mornings, I still don't know how I will get through the day. These kinds of mornings happen more often than not.
The week of Christmas, Spencer had his follow up appointment to get the results of his biopsies. It was a horrible visit. Our GI doctor walked out on us. We literally sat there and watched as she grabbed her coat and coffee and left the hospital clinic. After 45 minutes, they took us back to our room where we sat another full 90 minutes before a nurse came in to tell us our doctor was just finishing up with a patient. Another bunch of minutes passed and another nurse came in to say that in fact, our doctor had left earlier but they would find someone to come in and meet with us.
I was frustrated to say the least and this was kind of the last straw for this doctor and me. Now, I do understand that doctors are human, they have lives, they have problems like the rest of us but the way she has handled things lately is very unprofessional.
A new Fellow came in and explained that Spencer's biopsies were normal however, the doctor didn't look at the small bowel and they feel that because of the blood work and stool studies that led to this surgery in the first place, they feel strongly that Spencer may have carcinoid tumors of the small bowel. I really liked this doctor. She explained things well, allowed me to ask questions and on many things we agreed that several tests and things have been missed by our GI doc due to negligence. I brought up the mast cell disease theory, the histamine intolerance and some other things I've been studying. She said that those were things she had thought of too and felt we needed to test.
A short while later, the substitute doc came in and reiterated what the Fellow said. I really liked this doctor too! I asked if we could switch to them but apparently, it doesn't work like that. I forgot that we live in a America, where the government actually tells you how things are going to be and where freedom exists, only in fairy tales.
Seriously! This led to an impromptu meeting with the director of the clinic who, after much discussion admitted that our doctor didn't want to see us anymore but not only that, the new one didn't want anything to do with us and he really couldn't think of any of the 18 GI doctors who were willing to see us. This is a very long story so in the interest of boring anyone, basically...we are too complicated of a case. They want simple cut and dried problems. Each GI doc has their niche and we don't fit their niches in a tidy manner.
I am furious! I have never been quite so angry. On my way home, I called my friend in California and sobbed. She has three kids with a rare bone marrow failure disease as well so she gets it! It's so unfair that we have to deal with sloppy, inconsiderate doctors on top of everything else.
Furthermore, because I couldn't come up with $3000 in cash to pay for a CT scan up front, we have to wait until February 6 to get the tests Spencer needs to find out if he has cancer. So, here we sit, through the holidays, through the month of January...wondering and worrying about what's next and no GI doctor to interpret the thousands of dollars worth of tests we did last week.
Today we received more bad news on Spencer...but I will post that tomorrow! Ugh.
Had I been told back then, that I would be doing what I do now, there is no way I would have believed you and more than likely, it would have made me think twice about starting a family...let alone get married. But, I'm glad I had my children. I wouldn't go back and change that, but still, there is no way I would have been able to believe that living a life like this was possible.
There are some mornings, I still don't know how I will get through the day. These kinds of mornings happen more often than not.
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| For 17 years, I have been collecting Mary Englebreit Calendars. This year the kids got me "The Dark Side" and I am in love with her dark humor and art to go with it. This one made me laugh. |
The week of Christmas, Spencer had his follow up appointment to get the results of his biopsies. It was a horrible visit. Our GI doctor walked out on us. We literally sat there and watched as she grabbed her coat and coffee and left the hospital clinic. After 45 minutes, they took us back to our room where we sat another full 90 minutes before a nurse came in to tell us our doctor was just finishing up with a patient. Another bunch of minutes passed and another nurse came in to say that in fact, our doctor had left earlier but they would find someone to come in and meet with us.
I was frustrated to say the least and this was kind of the last straw for this doctor and me. Now, I do understand that doctors are human, they have lives, they have problems like the rest of us but the way she has handled things lately is very unprofessional.
A new Fellow came in and explained that Spencer's biopsies were normal however, the doctor didn't look at the small bowel and they feel that because of the blood work and stool studies that led to this surgery in the first place, they feel strongly that Spencer may have carcinoid tumors of the small bowel. I really liked this doctor. She explained things well, allowed me to ask questions and on many things we agreed that several tests and things have been missed by our GI doc due to negligence. I brought up the mast cell disease theory, the histamine intolerance and some other things I've been studying. She said that those were things she had thought of too and felt we needed to test.
A short while later, the substitute doc came in and reiterated what the Fellow said. I really liked this doctor too! I asked if we could switch to them but apparently, it doesn't work like that. I forgot that we live in a America, where the government actually tells you how things are going to be and where freedom exists, only in fairy tales.
Seriously! This led to an impromptu meeting with the director of the clinic who, after much discussion admitted that our doctor didn't want to see us anymore but not only that, the new one didn't want anything to do with us and he really couldn't think of any of the 18 GI doctors who were willing to see us. This is a very long story so in the interest of boring anyone, basically...we are too complicated of a case. They want simple cut and dried problems. Each GI doc has their niche and we don't fit their niches in a tidy manner.
I am furious! I have never been quite so angry. On my way home, I called my friend in California and sobbed. She has three kids with a rare bone marrow failure disease as well so she gets it! It's so unfair that we have to deal with sloppy, inconsiderate doctors on top of everything else.
Furthermore, because I couldn't come up with $3000 in cash to pay for a CT scan up front, we have to wait until February 6 to get the tests Spencer needs to find out if he has cancer. So, here we sit, through the holidays, through the month of January...wondering and worrying about what's next and no GI doctor to interpret the thousands of dollars worth of tests we did last week.
Today we received more bad news on Spencer...but I will post that tomorrow! Ugh.
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