Let’s go shopping

Isn’t is strange that “doctor shopping” is such a stigmatized label?  You’d think it was something criminal.  Even as I type it, I am tempted to go back and change the wording.

I’m staying home today.  I have plenty of work to do and I’ll do it when I’m not in the bathroom or lying down.  For the past few days, I’ve had stomach pain and nausea.  I had thought it was from my migraine.  I get GI symptoms with the migraines sometimes, mostly stasis/slow motility type ones, i.e., nausea and lots of it and if I’m foolish enough to eat anyhow, indigestion and dull pain.  I don’t know if it’s the meds or the migraine itself, but it happens.  I had a migraine on Tuesday.  And I I had sharp epigastric pains Tuesday night and into Wednesday. I  guessed it was from the migraine, but then I was thinking about it and I realized that I had started taking a new vitamin Monday…a nice big fat iron free vitamin.  Took it Monday night, didn’t take it Tuesday because I’ve learned to avoid vitamin pills when I have indigestion, and then took another on Wednesday night.  I took it Wednesday because other than staggering through my day like a zombie on Wednesday (which I chalked up to weather changes and the first day back on my work schedule after a week off), I was feeling better.  And that brings me to yesterday, Thursday.  Thursday was chock full of nausea, that epigastric pain, and the fatigue turned into almost passing out at work.  I used to have a lot more warning about passing out, but I think now that I walk around feeling so cruddy, I’m not as aware of the approaching faint.  Blood sugar was fine.  wtf?

I read the vitamin bottle last night.  Nickel.  Great.  So I’ve taken two doses, and after both I’ve felt horrible.  Not immediately, but that doesn’t rule out allergy since my reaction to Nickel really takes about two days to fully manifest in all its blistering glory.  Is this what is going on in my stomach now?  I hope not but I am a little concerned that I did this to myself by not reading the exceptionally fine print on the vitamin bottle.  Blurg.  I think I can at least conclude that the vitamin made it worse, if it isn’t the primary cause.  So, should I let someone know what is up?  Should I call my GI doctor and let her or whoever is covering for her know that I’m walking around just this side of a faint, having pretty bad gastric pain, and am ready to barf?

As I ponder this, it bears mentioning that I am out of PPI med and refills for the Rx again.  I am out again because the GI doc’s office has been calling in one and two month refills since May.  I had a follow up appointment scheduled for November and was going to address the Rx issue then, but they canceled it because my GI doc is on maternity leave and told her office that I didn’t need to be seen until she came back – in February.  I have since changed jobs and insurance, and now seeing the less than great GI doc whose office loses messages, whose service has messed up my meds for over 7 months, and who told me that Ehlers-Danlos doesn’t have GI manfiestations will cost me nearly $50 a visit.  My general expenses are less than $50 a week, and they’re like that for a reason.  I don’t make a lot of money.  $50 a visit is too much.  I’ve been meaning to change GI docs for a while now but haven’t done it because of the stigma of changing doctors.  Which brings me back to doctor shopping.  I think I need to shop today.  I am not certain I need to see someone as a “hey please work me up all and down!” again kind of thing, and that’s tough because most of the time, it seems that this is what specialist appointments are about.  That’s what the script goes like.  Patient gets referral, doctors identify or rule out cause, patient is “discharged” from service.  But how about me, someone who has had GI problems pretty much my whole life and whose primary care, while very good, is not really equipped to deal with managing them in either their chronic or flaring states.  Since maintenance of a chronic problem is not part of the usual specialist script, I think that’s one thing I think I need to make clear when I make the appointment or at the first appointment.  The other stuff is that I want someone who is at least interested in gastric motility issues, who can help me with the malabsorption stuff (my hair is still falling out, part of why I had the bright idea to try a multivitamin again), and who can monitor my recurring gastric polyps.  Oh and it would be swell to have someone who is knowledgeable about Ehlers-Danlos and/or gastrointestinal symptoms of allergies.  I was talking with my husband this AM about how to approach this and it occurs to me that it feels like I’m writing the Mary Poppins “Perfect Nanny” letter.  And some part of me that’s been conditioned to the stigma of doctor shopping is horrified and says that I am asking for too much.

But here’s the thing.  It’s my body.  It’s my health.  It’s expensive and time consuming to see a doctor.  Not everyone is going to be a good fit in terms of working together and communicating.  Moreover, doctors have different specialties, whether that is a codified “specialty” or an informal one governed by clinical experience and general interest.  And lastly, yes I’m going to say it, not all doctors are good at what they do.  Why that last one is such a taboo issue is beyond me.  Why should anyone ever think that each doctor is as good as any other doctor?  They aren’t!  Doctors know this.  Why are patients not allowed to know it?  You put all those things together and the logical conclusion, the sensible conclusion, should be that the responsible thing to do is to “doctor shop”, as in look for a doctor who is a good fit clinically and interpersonally and who is good at what they do.  It sure seem sensible to me.  However, this is a minority opinion.  That’s not the way it is supposed to go.  It’s supposed to go like a blind date that people who don’t even know you set up.  And you’re supposed to be ok with it, not just with one date but several.  And we’re not just talking dinner and a movie.  This is a date that’s going to get all personal, where you have to talk about your bowel habits, psycho-social history, family, and where this person is going to put their hands on and possibly in your body.  No one sane would agree to a blind date like that.  So why are we expected to agree to it in our healthcare?

Update:  I just filled out the “make an appointment” online form for one of the B.A.T.H.’s GI services.  There’s a section where you are asked to tell them about your condition.  I’m sure what I wrote is going to raise some eyebrows.  Well, you know what?  If they can’t handle it, then perhaps they’ll have the sense to pass.

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