I depend on my team, yet I have a role too. A medical expert I am not. I need a little help from my friends. I am sure at times people with medical expertise read my blog and roll their eyes. I just want to take the time to remind all of you that I am in no way a medical professional, yet here I am writing about a medical condition. I know that many times I have probably gotten terms, symptoms, and explanations wrong, from a strict medical standpoint. I am writing from my point of view. I am no expert so I lack the medical terminology related to neurogenic bladder and bowel. But, I do live it. The power of hearing my stories is that they are what happens to a patient living with neurogenic bladder/bowel disease. I experience the symptoms, the bladder infections the constipation, the hemorrhoids, the bladder pain, and walk the walk.
My goal is to give others the perspective, from a patient’s viewpoint. As much respect as I have for my doctors, I sometimes feel that our system is a bit broken and disjointed. What surprises me most about my medical care is how at times, the right hand sometimes does not know what the left hand is doing.
I know that my family practice doctor is the keeper of my records but sometimes I am not sure who to call when I need help.
Here is an example:
Not long ago I was feeling lousy, so I decided to make an appointment with my family practitioner. Because of my history, she had me leave a sample of urine. The next day I got a call saying all was well. But all was not well. The day after that I felt worse and asked my urologist to give me a lab slip, because by then I KNEW that I had a bladder infection. Sure enough, this time it came back positive and I went on antibiotics. I felt like I had wasted money going to my family practice physician, yet could I have made an appointment with my urologist just because I felt lousy? I was trying to do what was the right thing to head things off, but it gets confusing.
Recently, while filling out my forms for a new internal medicine, I noticed there was not a place on the form for comment regarding bladder and bowel issues. It was not until I met the doctor that I was able to mention my chronic pelvic pain, bladder infections, diarrhea and constipation. That part of the body was totally ignored on the form but there was a place for eyes, heart and orthopedic issues . . . go figure?? Perhaps I am over-thinking this a bit. I know I have a urologist to help me with that part of my body. I just want all of my doctors to be on the same page….
Am I asking too much?
Besides my urologist and general practitioner, there is also a neurologist on my team. So that is three doctors for me to coordinate!
My neurologist is nothing short of amazing. The research he did in hammering down and recreating my detailed medical history was so complete: when this surgery happened or that procedure occurred. I am thankful for the outstanding record of my health that he has assembled. In a way, it is my opinion that he has done what a family practice person should have been able to put together: my complete medical picture. With computers and electronic medical records, perhaps this will be in our future. Will I continue to be looked at, medically speaking, as a whole being . . . not so fragmented?
To help me sort out life living tips, the needed information that I do not get at the doctors office, I have come to depend on resources I have mentioned on the blog. I get so many helpful tips from outside sources. I am part of a Facebook page that others write into for discussion or just comments that help us vent thoughts about our concerns that fill our life related to bladder and bowel problems. The website called Inspire is another place I go to for advice from other patients.
With so many cooks stirring the pot, how do issues stay straight for ME, medically-speaking? I do not always understand what I am being told. Some issues are confusing to me. Please forgive me if I, too, sound confusing at times.
I will do my best to keep things accurate and precise.