The verdict

So, the long-awaited rheumatologist appointment was yesterday afternoon.  5 weeks and half a dozen tearful pleas to get an earlier appointment, and guess what the verdict was?

I have been diagnosed with “a constellation of lupus-like symptoms, but definitely not outright lupus.”  Um, yay?  <scratches head>

I mean, don’t get me wrong, there is certainly nothing as awesome as hearing you don’t have a(nother) serious, life-impacting condition.  But, I’m so tired of the immediate next question in my head being, “So, what DO I have?”  Especially because, the answer is so regularly, “Well, I don’t really know.”

The next steps are to get additional blood work performed, as well as an MRI of my back.  Both the rheumy and myself expect that nothing unusual will turn up on either.  It’s more waiting while my insurance decides whether or not I’m permitted to actually get the MRI, but either way my followup with the rheumatologist is on May 7.  Less than 2 weeks away!  Assuming that nothing is uncovered on either the blood work or the MRI, the rheumatologist has given us her blessing to start trying to conceive again.

And, here’s my problem.  Like, my totally mind-fucking current obsession.  Have I gone off the deep end?  I’m having major quality of life issues, I’ve been building up the importance of this appointment in my head for over a month now, and I’ve fretted to everyone I know about how nervous I was for the visit.  Now that it’s over?  All I can feel is complete elation.  No, not because I don’t appear to have lupus, not because I actually liked and respected the doctor (though, that one was a shocker), and not because someone is investigating my complaints.  The only chorus that is echoing through my head is, “We can try again!  I can ditch the birth control!  I finally get to rip into that Gonal-F in the fridge!”

As I’ve started to explain the results of the appointment to friends and family over the past 24 hours, all immediately ask variants of the questions, “What can be done?,” “What’s causing the pain?,” and “Will she be able to help you?”  Honestly, I have absolutely no fucking clue.  I didn’t ask.  Only as I have started crafting replies to these questions have I realized how totally and completely I have lost my mind.  Me, the in-your-face, self-empowerment, take-charge-of-your-health, Hashi’s princess, I’m answering these real questions with squishy “I don’t knows” and other forms of cop outs.  I’ve marginalized my pain by stating that, since I’ve lived with this pain for so long now, continuing to live with it without a real cause will be no great challenge.  And, it’s true, on my good days I can visualize a future where I still have this pain and not be that troubled.  Half the battle with my pain is the constant wonder of what it means for the future.  If I know I don’t have lupus, the pain is infinitely more bearable.  Similarly, I’ve started parroting back the same unsatisfying answers to my friends and family that so many of my doctors use on me.  “Autoimmune issues/inflammatory conditions/non-specific pain are hard to diagnose and treat,” I say.  “You see, so much of the body is a complex network of interconnected pathways that its impossible to distinguish one syndrome/set of symptoms/AI disease from another,” I reply.  “Antibody testing is notoriously inconclusive,” I explain.  Unfortunately, I know enough to know that all the above are true, yet I’m dumb enough (and, apparently, beaten down enough) that I’ve given up caring about pushing any further.  It’s like I’ve developed infertility Stockholm syndrome.  I’ve been fighting the system – doctors, insurance providers, society – for so long, I have suddenly started to accept their orders as truth.  I deserve to be treated like this, I’m infertile.  I know you can’t give me answers and I’m sorry for being such a complicated case.  I understand that you don’t have time for me.

But, since everyone needs something to look forward to, I’ve silently and slowly refocused my battered brain.  You know the only thing I’m 100% fixated on right now?  We can start trying to have a baby again in 1 month’s time.

When we started trying to conceive in 2010 I stopped caffeine, I stopped alcohol, I watched what I ate, I was a perfect little stereotype.  Now, as I sit here with debilitating back pain and a whole host of unexplained medical complications, I’m all, “Knock me up doc!  Let’s get this show on the road!”  Time takes a terrible toll on one’s sanity.  I’m a cautious person, I over-analyze all that is in front of me, and I try to find a balance between doing what’s wise and doing what’s necessary.  In the last 6 months, that has ceased to be the case when it comes to my reproductive health.  If someone called me today and offered me a free IVF cycle with an unlicensed doctor operating out of the back of an RV I’d probably do it if there was even the slightest chance of my becoming a mother.  And, that’s terribly, terribly frightening.

6 thoughts on “The verdict

  1. OH yes, I understand where you’re coming from! That’s a very similar response I got from my rheumatologist. (How’s your Vitamin D level?) All the extra testing led to another antibody popping up. Her response was, well, I don’t seem to have any real symptoms of Lupus or Scleroderma, but I do have Hashimotos…I never went back. So, when you talk about not pushing any further, I understand and agree. I spent too much time going to all of the specialists and I only had answers from Dr. B and Dr. K! I felt like I was wasting my days off just going to doctors. The Hematologist, Endocrinologist (I didn’t like), Rheumatologist, Neurologist, Therapist, Orthopedist, Physical therapist, Acupuncturist, Reproductive Endocrinologist, Gynecologist, Endometriosis Specialist, and Chiropractor, I feel like I’m forgetting one…anyway, there is always another -ologist we can go to. It may never end! OK I’ve rambled too much. Hugs and congrats on the go-ahead! Maybe we will run into each other next month!

    • Haven’t had my D rechecked since I moved this summer, but it was just finally at 50 last time it was checked by my old endo. That was after 3 months of 5,000IU/day. I’ve asked to have it (and B12 and ferritin/iron) retested with my next thyroid workup in a couple months. We’ll see if the PA consents.

      I’m hinging my hopes on Dr. B’s being totally unconcerned about the findings. There are always more answers to find, it seems, and I’m just tired of asking the questions. Time to move forward.

      Sorry, you’ve been on this path too. I have to say, though, I have such high hopes for you in the coming months. If your hope wavers (which it understandably will), know there are a bunch of us out here holding on to hope for you!

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