Candid Conversations

Every 6 months I go to my PCP for an appointment (unless a problem pops up prior to that), I call it my "I am still not dead" appointment, as normal people only have to see their PCPs every two years for a physical. Today's appointment led to some great conversations. Let me start out by saying one of the things I really like about my PCP is his honesty.

We started out the appointment by him saying "Your vitals aren't horrible but..." apparently my blood pressure was pretty low. This isn't uncommon for POTS patients but as far as POTS patients go I tend to run on the high side so the reading (which I don't quite remember but was 90something/60something) was low for me especially since it was the day after an infusion.

Later on during the appointment we talked about what specialties are being transitioned from peds to adults. Of course my adult GI disaster was talked about. Long story short the adult GI I saw wanted to un-diagnose me with everything my peds GI had diagnosed me with and rerun all the test (including the one testing for the Celiac gene). He came to all the same conclusions and then wanted me to do a gluten challenge and another endoscopy to see if I really did have Celiac but could not tell me how it would be different from my last endoscopy I had while still eating gluten.

My PCP at this point said I was the second person he saw this week to have an experience like this at the GI department. He then turned to me and said he was going to say something very candid. I was a teenage girl with a lot of random diagnoses and no overarching or connecting diagnosis. Many medical problems yet most of what I have does not show up in blood work (although it shows up is another test like biopsies and gastric emptying studies). Many doctors look at my case and think it has been over medicalized and is really just psychosomatic issues such as a social disorder or and anxiety disorder. However patients who fit into that category tend to still live with their parents and are not in school or socialize. I do not fit into that category. I am full time student with two jobs and involved in lots of extra curriculars. My PCP said when he saw my chart he was not expecting me to be as put together and have as good of a handle on everything as I do. I am not sure how to take this. I am glad my PCP was honest with me. It confirms what I already knew about doctors treating teenaged girls differently. I just find it ironic that doctors have suggested to me I take on too much and to consider taking time off from school. Yet if I wasn't in school they wouldn't treat me the same? And think my problems weren't real?

To lighten the mood here are some other quotes from today:

While getting my blood drawn:
"Wow your veins are shot"
"Which one do you use for your infusions? I don't want to blow it because you don't have a lot of options"
"The great thing about a butterfly needle is you can really dig around"
"Don't leave the tape on too long, I can see your past reaction" (as she puts tape over the past reaction)
The reaction fro all the tape since this is the only place anyone seems to get vascular access on my viens anymore..

Then at PT after I explain how low my BP was during my PCP appointment my PT said it was okay because for the next half hour at least there was an ICU nurse there (a fellow patient)... awesome.