I had a poor experience today at a free clinic. Although the 2nd year med students who volunteer and run the clinic were mostly fabulous, the doctor was much less so.
In about 5 minutes he managed to:
not listen to me and barely listen to the student who was 'presenting' my case after taking a thorough and compassionate history, question my diagnosis of Celiac Disease (made in 1996), accuse me of "cheating" on my gluten-free diet, not greet me nor introduce himself, barely looked me in the eye, ask to see my OTC inhaler so he could see what it was then scold me for not using it properly. He didn't hear my primary reason for being there today, never once was my diagnosis of ME/CFS even mentioned by the student (apparently he thought it wasn't relevant, even though we were discussing my immune system. And that's assuming he even knows what ME/CFS *is*), he questioned my weight (which again, is a struggle because I can't really exercise within my energy envelope and heart rate restrictions) , questioned my diet, and then he told me I was having very bad allergies (even though I'd just said that my allergies had been recently treated and that seeing an allergist wouldn't help me) referred me to an allergist and said he believed there was some underlying immune system problem, then walked out of the room without any closure.
I was able to chat for a couple minutes with the student who had taken my history and presented my case after I saw the doc. (who didn't have anyone else waiting and had no reason to run out of the room like that except that perhaps he was uncomfortable with my case) The student kindly took my contact information in case some referral opportunity came up. They had no sources of cash pay specialists....odd for a free clinic, yes? I'm not sure. The student explained that he was probably reluctant to prescribe a rescue inhaler because treating the asthma could cover up an underlying condition. Ok sure, I suppose I get that.
Really? You just saw someone with obvious allergy/anaphylaxis issues who says that they have trouble breathing and that some symptoms include swelling of the esophagus. Some practitioners would have a big issue with him letting me walk out of there without an EpiPen, let alone a simple rescue inhaler.
The student seem apologetic and was sorry nothing else had happened for me. I started out the interaction by stating that I didn't expect a free clinic to figure out all my issues and that I was there for the asthma and for an inhaler. I guess I set my minimum a little too high. :-/
The other issue I had, in retrospect because it all happened so fast, was that all the work over the past six years I've done with my primary physician in AZ, a Naturopath, an NMD, was dismissed. She went to four years of medical school like any MD, and she even did a residency and advanced training after medical school. The student I worked with didn't even know the difference between a Naturopath and a homeopath. This lack of knowledge and understanding certainly contributed to my symptoms and my diagnosis of ME/CFS being dismissed and ignored.
The other issue I had, in retrospect because it all happened so fast, was that all the work over the past six years I've done with my primary physician in AZ, a Naturopath, an NMD, was dismissed. She went to four years of medical school like any MD, and she even did a residency and advanced training after medical school. The student I worked with didn't even know the difference between a Naturopath and a homeopath. This lack of knowledge and understanding certainly contributed to my symptoms and my diagnosis of ME/CFS being dismissed and ignored.
By the time I got to my bike I was weeping tears of frustration, anger, and disappointment. I was crying so hard it would have been unsafe for me to ride just then. It probably took about 20 minutes for me to calm down. And all afternoon whenever I thought about this again I would just break down. I think I'm finally calm enough now since I was able to write the above story without a tear. But now my symptoms are so high I wasn't able to go out like I'd hoped for and felt up to earlier. Yes, stress contributes. But it's obviously not the cause.
I have an appointment next week Wednesday with a doc at One Medical in San Francisco, a medical group of general practitioners (who seem aware of integrative medicine) who will see patients on a cash basis. I'll pay a total of $300 just to see a Doc, so he better be good.
In the meantime I though I'd share a few photos I've taken of my most distressing symptom, the hives. Sadly I missed taking a photo of the day when my ankles were so swollen that the pressure on the blood vessels cause them to break and I had purple splotchy bruises for a few days. I also missed photos of the extremity swelling at its worst, but I have a couple of hives with moderate swelling.
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| Right ankle showing hives, swelling, and painful evidence of a day at work. See the other ankle picture below to compare the swelling. This was taken early on, within the first month of symptoms. |
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| Both ankles showing purply splotchy hives on the right. |
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| Early on the hives bled together like this covering 40-50%, at least, of the surface area of my skin. I was hot to the touch. |
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| Most days, with the high doses of palliative meds they usually look like this. |
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| With palliative meds |
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| Taken on the worst symptom day I had to date. |
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| Taken on the same "worst day" the only day I've called in to work. I was so sick I could barely roll over to take the picture so I just lifted my shirt and did my best. |
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| Relatively unswollen ankle for comparison to above |
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| Taken today |
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| Taken today |
