Consumer-driven health care

First of all, I’m sorry I left you all hanging.  Grand build-up to the rheumy visit Monday, complete radio silence Tuesday.  Despite the fact that I’m now freaking the fuck out that ya’ll are going to think I’m some Munchhausen by Internet wackjob (thanks for planting that seed Jenny and Rachel), my silence wasn’t exactly a plea for help.  I just got really busy with a work retreat yesterday.  That said, the texts, tweets, and emails were immensely appreciated (you all know who you are!).

So, the rheumy was a total waste of time.  I don’t know why I expected any different.  I’ve been in this game long enough that I should know better by now.  Our healthcare system is broken, and it’s dysfunction is slowly breaking me.

In the spirit of my normal Wednesday bullet list, let’s review some dates:

  • February 18: Completion of third miscarriage.
  • March 18: First abnormal test result that prompts referral to rheumatology and cancels our future cycles.
  • June 22: The first appointment time I was offered by the rheumatology practice affiliated with the urban hospital network connected to my endocrinologist’s practice.
  • April 23: Day I managed to snag an initial consult with a different rheumatologist (after calling around to all rheumatologists within an hour AND crying to multiple schedulers about my poor infertile self).
  • May 1: Blood work drawn.
  • May 6: MRI performed.
  • May 7: Follow-up appointment canceled because doctor’s out sick.
  • May 13: Follow-up finally happens.

So, it’s been 3 very shitty months of waiting and wondering.  Months of fretting that my symptoms would go away, that my lab results would normalize, before I could in to see the doctor.  Months of documenting every tick, every ache, every skim blemish.  Yet more months of longing to be a mother, living another Mother’s Day, allowing my endometriosis to grow, as I wait for a time convenient for my medical practitioners.  At least, I hoped, it would be worth it.

It wasn’t worth it.

Two lab results came back as abnormal.  In March the ANA speckled pattern was 1:1250 (normal is less than 1:80).  Last week ANA homogeneous pattern came back at 1:320 (same normal range).  My C-reactive protein – a marker of inflammation and/or infection – is also elevated.  So, results, right?  Not really.

The rheumatologist’s ultimate verdict was that I may be developing lupus, rheumatoid arthritis, and/or fibromyalgia, but that I didn’t yet meet the full diagnostic criteria for any of those conditions.  She offered me Plaquenil, warned me of the myriad of possible side effects and many months it would take to work (if it worked at all), and I declined the prescription.  She was 45 minutes late to the room, and spoke to me for 3.  She ushered me out the door with a nonchalant, “Come back when you can no longer function.”  Wait, what?  When I can no longer function?  (Surely you meant if, no?)  WTF?

I’m learning that the good thing about living in the middle of nowhere and having to drive mile upon mile to get to utterly mediocre doctors is that the drive provides ample post-appointment cry time.  I wailed like a banshee, I pulled back to whimpers, and, as I rounded the corner into our village, I had just a few sniffles left.  I walked in the door quietly composed, prepared for Mr. But IF’s flurry of curse words and promises of bodily harm to all doctors.  It’s a performance I know well, this drive home in tears, greeted by hubby’s shouts, sinking into a tub of ice cream and sci-fi TV routine.

So, I have one more date to add on the list.  May 23.  That is the day my period should arrive, and the day we return to the RE.  That day is my silver lining.  I’m trying not to focus on the fact that it should have been March 23 and not May 23, but most of the time I fail.  Come May 23 things should change around here as this blog transforms from one of an infertile-in-waiting to an infertile-injecting.  It’s about damn time.

11 thoughts on “Consumer-driven health care

  1. Oh my goodness…I can’t imagine how frustrating that appointment was for you! I can’t even believe it. So, so sorry that you didn’t receive any concrete answers or help of any sort. Glad you have that silver lining up ahead, but I’m sure some days (most days?) it doesn’t feel like enough.

    • And, I guess, more to the point, some days it just seems like I’m insane. You know that over-used definition that insanity is doing the same thing over and over again and expecting different results? I think that’s pretty much me and medical specialists at this point. Why do i ever expect they’ll help me?

  2. I know exactly how you feel. I have to drive at least an hour or two to get decent doctors. When I went to the rheumatologist in 2011, I got the same thing. Come back when you get lupus or scleroderma. Some “specialists” don’t want to help.

    • It’s stunning how common the “Come back when you are truly f-ed up” approach to health care is. It took Hashitoxicosis for my thyroid disease to finally get diagnosed, so I guess it’s no wonder that the only advice I left with Monday was basically “We’ll treat you when your limbs start falling off.” I’m sorry you’ve gone through so many similar trials.

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  4. Uhg. I’m sorry you had to experience such a fruitless doc’s appointment. Sometimes it feels like they have no clue that they’re dealing with actual *lives*. Hang in there.

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