Wednesday, June 14, 2017

The Storm After Years Of Calm

What’s one of your worst fears?

One of my worst fears, for as long as I have been chronically ill, is seeing a new doctor who disagrees with my diagnoses.

That’s exactly what happened yesterday.

My old rheumatologist is leaving the state so I needed to find a new one.  I opted not to stay within the system my old rheum was in because he and I talked about it, and it wasn’t particularly convenient for me proximity-wise, and he had heard of the doctor that had previously been recommended to me by a family friend.  He felt that my illnesses are at a stable enough place where I didn’t need to stay within the same system if I didn’t want to.

I’ve been waiting several months for this appointment.  My hope was to get in while my old rheum was still practicing, but that didn’t happen.

So finally, the appointment was yesterday.  I went in feeling very prepared.  I had a notecard with my current medications and a notecard with my past medications.  I had a list of hospitalizations and procedures.  And I had a list of current issues that I wanted to make sure I touched on.    

I wasn’t prepared.  Not by a long shot.

This appointment felt eerily similar to my first appointment with my old rheum.

Questions being thrown at me rapid fire.  Asking me why I had listened to my previous doctors, all the while expecting that I am going to listen to everything this new doctor is telling me. 

It felt the same.  Almost.

Except that back nine years ago, I was on a quest for answers.  And now, this one appointment has seemingly refuted or called into question everything that, that appointment nine years ago sought to make clear.

That I thought was clear.  That I had accepted as given.  That I had accepted as my life.    

This appointment was 50,000 times worse because this doctor refuted the last nine years of my life.  Like it’s a lie.  Like it’s some kind of joke that I haplessly fell for.  Nine years. 

Nine years of experience can’t be wrong, can it? 

I know how I felt then.  I know how I feel now.  I know that I’ve been on a lot of medications that did not work.  And I know I am currently on a regimen that is keeping me feeling reasonably well. 

Basically this new doctor is saying that I may have lupus and RA, but I may not.  And that she is 100% sure – from NOT looking at my records, not having any current labs or x-rays – that I have fibromyalgia.  But as for the rest, it’s up in the air right now.

So if I don’t have lupus and RA, how does one explain why the medications I’m currently on have worked and have made me feel better?  Clearly it’s not just a placebo effect, that the very act of taking pills makes me feel better.  Because I’ve been on plenty of medications that have made me feel far worse.    

It’s not like being told you have cancer and then someone saying that, actually, you don’t.  That is probably the kind of news that most people in that situation would be glad to hear.

It’s not as if lupus and RA are small potatoes.  I would love not to have these illnesses, or any illnesses at all, for that matter.  But I do.  And I’ve been working within the confines of these diseases for nine years. 

Everything makes as much sense as it seems life ever makes with lupus and RA.

I know who I am with these illnesses.  I’ve accepted the life I will have because of these illnesses.  In many ways, I am who I am today because of these illnesses. 

Take that away, and who am I?  I don’t know.  The hurt and confusion that I’m experiencing right now is deep. 

It’s not like the things this doctor is saying click and make sense, and I’m finally seeing everything clearly for the first time in nine years.  In fact, for the first time in nine years, since I was diagnosed, I feel the way I felt before I had a diagnosis, before I had a name and diagnostic code to slap on myself.  I feel lost and scared.

I’ve felt lucky that I had labels to put on my diseases and that I had concrete evidence for having those diseases.  Is it possible that my lupus and RA are in clinical remission, but I’ve developed fibromyalgia secondary to that?  It wouldn’t surprise me, if, after spending so much time in pain, that my body misreads the pain signals and creates pain even when it’s not actually manifesting in my organs and joints. 

But to say that I don’t have lupus and RA at all and that I never actually did?  I truly don’t know what to say to that.  It’s incomprehensible.    

I’ve built the last nine years of my life around these illnesses, and for that to be taken away?  It’s unexplainable.  It’s devastating.

I’m not a science experiment.  You can’t just act as if what I’m telling you and what I’ve experienced doesn’t matter.  I know my body better than some doctor that I’ve never seen before and who literally knows nothing about my history. 

So maybe at our next encounter, maybe I will stand up and fight harder.  But I was so taken aback, so crushed, that all I could really do is sit there and shake my head.  Like is this really happening? 

I got beat down.  And I slowly have to get back up.  I’m trying to convince myself that no matter what, I belong in and to the autoimmune disease community and that all of the work and advocacy I have done over the last nine years matters.  And it breaks my heart to think that, that might not be the case.    

The worst part of the whole interaction was that there was no care or concern.  It wasn’t that this doctor seemed genuinely concerned about me being on medication that I don’t need to be on or that I had been treated unsuccessfully for two diseases for nine years and now it was time to find answers.  It seemed like she just wants to be right.

And I’m not convinced that she is.

And I have to wonder about her end game.  Does she want me to go off of my meds to see what happens and how I and my labs look without my current medications?  I don’t think I will be functional for a week without them.  I’m not sure I’d even be functional without them for more than a day.  

Maybe it’s too soon to be writing this post.  None of the labs or x-rays are back.  But I had to get it out.  I had to turn to the one place that I have documented everything since this journey began nine years ago. 

I think part of the most insulting thing is that when I was leaving, she handed me three brochures created by the Arthritis Foundation – one for lupus, one for RA, and one for fibromyalgia.  I will read them, cover to cover, only so that I can note down all of the symptoms that I have to prove a point.

But I don’t need them.  And I don’t deserve to be handed them as some consolation prize.  I’ve been doing this for nine years.  It’s insulting that that’s the impression she got of my knowledge of my own illnesses.    

But when your bedside manner paralyzes a patient and takes them back to where they were when they had no clue what lupus was and thought arthritis only happened to old people, that’s a problem.  When you take someone who is stalwart at advocating for others and cause them not to be able to advocate for themselves, that’s a problem.  And honestly, that’s on her, not me.  So let’s get one thing straight.  I am not that scared 22 year old that I was when I was diagnosed.  I’m a stronger, better person than I was then.  And I need to muster my strength because apparently, I’m literally and figuratively just getting started.  

(I had originally planned after the appointment to try my hand at vlogging, but that’s not happening because I would just be a hot, crying mess)


  1. I was hoping you were going to follow your instagram with good news about your new RA doc appt. I am very sorry it did not go that way. I was looking toward you for hope in next's weeks new appt for me. I do not want to have to drive to the research hospital in a big city for my RA, I am trying to cut my distance to less than half. I am so frustrated with where I have been going for 10 years.
    I really hope that your follow up appt. goes better. And that mine works out.

  2. Omg...So sorry you had such an awful experience. To be honest I would look for another doctor. You have e wry right to be offended. Extremely irresponsible of her to question something your other doctors have already confirmed. And she didn't see any test results? How can she say you don't have RA or Lupus. These can't actually be confirmed by test....where's fibromyalgia can not. SMH....
    Hope you can find a more compassionate & informed doctor!
    Gentle Hugs.....Take care of you!

  3. Ug! I dread the idea of starting the diagnosis/figure out the meds thing again----that is why I hold tight to the meds that seem the best I've had even though maybe something else might be better. And I hold on to my current Rheumatologist even though I'm not entirely happy with her. I'm sorry you are having to go through this and hope the next visit is better!

  4. So sorry to hear about your new doc. That is beyond frustrating! I had a similar experience when I first started seeing my doctor now. We got off on the wrong foot, she questioned my diagnosis but I looked her in the face and told her that yes, I have RA... originally diagnosed as JRA when I was 18 months old and that NO, I've never "grown out of it" and have never went into full remission either. I need my medication to control the profession of my disease and either she knows what she's doing or she doesn't. I was completely offended by the thought of "it's in my head" or whatever she was implying. She scheduled labwork and I made a follow up with her. At that appt I brought in my huge, thick, stack of military records for her to review plus the records from my last doc. Luckily something clicked and she continued my treatment, even recommended some changes over the last few years and I now think of her as one of the best Rheumy docs that I've seen. But I completely understand that frustration and anger. I sure hope your new doc gets to know you and what your body needs and is able to help you. Hugs!

  5. Do not let her white coat and prefix fool you. If she did not have test results or know your medical history, this "anti-diagnosis" makes no sense. The best doctors listen first and foremost. She sounds like she wants to have control and be the genius who figured out the misdiagnosis. If she is not listening and not looking at concrete proof and trying to undiagnose you without those things, don't put stock in her opinion. Those are not the marks of an effective doctor.

  6. I've done neurologist shopping for my MS. I was looking for someone actively using the portal, accepting of my use of massage, acupuncture, and chiropractic. Not full of themselves and interested in me. Took several tries before I found a suitable new one. Takes time to develop a good team. But it's worth it.

  7. I find doctors who make immediate pronouncements to have preconceived notions of outcomes. I refuse to play with such doctors. I also require them to laugh. Hey life is to short to not laugh, even for doctors but especially me.

  8. Yes, to the laugh part. My best team members have a sense of humor. Life can be so f**in funny. Just ask my wife.

  9. Hi, I saw you on the CIB thread and I’ve posted your link on Pain Pals regular feature Monday Magic – Inspiring Blogs, Claire x

  10. you mention about how she seemed to want just wanted to be right is, I think, the key to this. As well as her treating this appointment as an interrogation, rather than an exploration. Trust you gut. and trust your brain. As well as the excellent doctors you have worked with. Don't let this confuse you. If at all possible, fire her ass and find someone who will respect you and your experience.

  11. I've had doctors try to refute my diagnosis claiming that anyone can have positive ANA's and honestly, Fibro is the new ADHD of the Rheumatology world. I had lost the ability to use my hands because of a lupus attack and a rheumatologist called it fibro and refused to help me at all. I had to get prednisone from the E.R. Having an M.D. on their nametag does not mean they're good.