Rheumatology appointment 3 May 2018

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So this is what Rheumy said…basically I have no idea what to do now.

While her honesty is refreshing, every appointment it gets more and more clear that she does not want the problem of me anymore.

Fair enough. She has tried her hardest.  I am a depressing patient. Not my personality, I tend to be upbeat, friendly, polite.  I don’t exaggerate or complain excessively, I lay things out simply and honestly.  I don’t get over emotional, I’m never abusive or rude, and I never blame her when things go wrong.  I never take out my disease or pain on her, as she’s told me other patient have.  I’ve been seeing her for 7 or 8 years now, it’s been a long-term relationship.  It may be the longest relationship in my life…I’m not sure if I’ve been seeing my GP longer.

And yes, all my long-term relationships ARE with doctors. Professional relationships.

We talked about Actemra, that it worked very well to begin with, but it failed quickly. It was good for about two months.  And they were great months. I even started jogging again.  Slowly, and not for very long, but I was getting fit again. Cardio-fit, on the treadmill.

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She said ‘Nothing works for you’ to which I responded that Actemra DID work, it just didn’t last. But she ignored me. It was like she had this rehearsed.  Nothing works for you, I’m at the end of my abilities, I think I should refer you onto a colleague who specialises in weird autoimmune cases.

Then she apologised profusely for calling me weird, which didn’t bother me at all. What DID bother me is the way she was getting rid of me.  I reminded her that I have one more biologic to try.

She just said “It won’t work.”

Fine. Brick wall.

Then she asked if I’d like to try infusions. I asked her to calculate the dose difference.  Each injection is 162mg, and you get four of those a month. So 648mg for the month.  At a current weight of around 93 kgs, the infusion dose would be 744mg.  Less than 100mg difference across the month.  Just over half a shot more.  Neither one of us thinks it will work.

And infusions are a pain in the butt.  Travelling to the hospital, sitting there for a few hours, getting stiff and sore. It’s a long drive (for me).  I have zero faith.  In fact, the more I think about it, the less I want to bother.  Its just another stalling tactic.  I know her, anyway. She’s telling me that she’s going to organise infusions but she won’t. It will slip through the cracks again.

Best case, it takes four weeks to organise, anyway.  Which brings me to the next point…the surgery for my compressed nerve.

My rheumatologist bluntly told me I need to have the surgery. That she ALWAYS recommends surgery where there is neurological compromise.  That if I don’t have surgery, I will have a permanent drop foot, and never regain the use of my calf muscle, effectively meaning I will never walk properly again, and never run again.

It was a little confronting.

Then I showed her my foot, and what I have been told is psoriasis. She agreed, it looks like psoriasis. She ordered some skin scrapings to rule out fungal infection.  She didn’t comment much, which is surprising given she added a new diagnosis – psoriatic arthritis.

Then she decided she would call my immunologist and talk to her…I can’t remember why. She still believes there’s something that she is missing, that ties together all my disparate symptoms and illnesses. Something that explains it all.

I’m sure there is…but I’m also sure no doctor will ever figure it out.  I have so many diagnosis…so many prognoses…I have to ignore them day to day. I’m aware…but I don’t need to think about it all the time.  I focus on the moment, the problem at hand.  I’ve planned for the future, now all I can do is fight for my function, to regain some strength, to live the best life I can, while I can.

She’s going to arrange a referral to the local autoimmune expert. I know this is a good thing, but I don’t want to go through EVERYTHING again.  I’ve had many opinions now…five rheumatologists?  All now that I have much more going on than RA, all tried to bounce me back to my originally rheumy, or elsewhere…anywhere else.

Patients like me aren’t good for doctor’s egos.  Even though of course it is not their fault, I’m a reminder that they can’t help everyone. That not everyone responds well to the current treatments. That inflammatory arthritis is a symptom of a great many things…and they haven’t nailed what it is that truly ails me yet.  And in fact, medicine has made me worse.

But I had no choice but to make the decisions I made. I don’t regret them, I had no other option.

I wonder how long it will be before I hear from her rooms again.  A month? Two?

Who’s counting.

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