Pancreas and Spleen Unremarkable: Knowing Yourself Inside and Out

Ladies and Gents—do you what it feels like when you know something is off?  You can’t put your finger on exactly what is going awry, but you know something (other than your normal lupus symptoms) just isn’t right? I have been feeling like that lately and not to sound like an armchair rheumatologist, but I think it is my thyroid.

I brought this up at a doctor’s appointment in early December and the doctor, who I was seeing while my normal doctor was out on maternity leave, completely dismissed me in favor of the numbers on my chart from the last few months. “Your thyroid function is within normal range” is what she said. “I am going to withhold any treatment on that.”

I pushed once and asked why I was having all of the symptoms of hypothyroidism if I was in normal range. She told me it was because of “the heavy-duty immunosuppressant drugs” I am on. And with that, I shut up. Not because she gave me an answer, but because she was completely wrong. I am not on any immunosuppressant drugs (save Plaquenil), let alone the heavy hitters that so many lupus sufferers rely on. I stopped talking because she revealed that she wasn’t listening–and even worse, she wasn’t informed.

If there is a single thing I have learned In The Lupus, it is that patients need to advocate for themselves. This might sound obvious, but when you are tired and sick and feel like you are getting less well by the minute, it is hard to do. It is hard to find your voice again once it has been dismissed by a physician. It is hard to confidently say: I know how my body reacts. It is hard to keep speaking up and fighting for another blood test, a new or different level of medication, or a bit of understanding. It is hard–but we still have to do it.

The Goal with Lupus is to TREAT-TO-TARGET. That means finding the best possible health we can be in and working towards it. And we can do that by following the overarching principles outlined in a new article in the Annals of the Rheumatic Diseases. The first principle in treating Lupus to target is:

The management of systemic lupus erythematosus (SLE) should be based on shared decisions between the informed patient and her/his physician(s).

It is a team effort. I know my chart goes back far beyond what a doctor has in front of them, and my experience in this body goes back further still. It is a lot of information to digest. It is a lot of information to keep up with. But that is everyone’s job; patient and care provider. We have to work together to manage whatever my best health is. We all need to do the same.

So that is why I spent last night elbow deep in my medical records building a case history on a single symptom to bring to my doctor today, and lobby for some blood work and then related medication so that I can stop feeling so cold and hoarse, and start feeling alert, and warm, and on the upswing again. Somewhere in the stacks I found an ultrasound report that said: Pancreas and spleen unremarkable. That made laugh and think of all of the things I know about my own body. I know the exact size of my kidneys; I know that I have a tiny liver cyst. I have seen my heart waves on paper, my genes rearranged, and the innermost core of my own eyes in 3D. I have all of my records in order, researched the lab results, and made a list of questions. I was ready to talk with my doctor.

My appointment went well in a lot of ways. I was able to get my chart corrected. I was able to talk to my doctor about the symptoms I am experiencing and why they are concerning me. She ordered the blood work that could help unravel my current Lupus mystery (it is thyroid related, mark my words). But then everything went downhill.

When I thanked her and said: “as long as I have your memory here, I am ok, but if you ever leave, I am in a world of hurt.”

She said she was leaving the practice.

Now more than ever, I know that I have to manage my condition and promote my own health. What works for me is a doctor who will listen to me and determine a course of treatment with me–the patient and the soul living in this body–and the numbers on my chart. Because the numbers don’t have a voice and I do.

I hope you will advocate for your own health too. Know your triggers. Know your early symptoms of a flare. Know yourself and speak up. No one else will do that for you.

—-

PS: I am trying something new. Whenever I post about a doctor’s appointment, I am going to post the good, the bad and the ugly of the experience. For this one the good was: a medical student shadowing my doctor. I love getting to talk to med students about patient care and lupus. I also love that this student was shadowing my doctor, who I think of very highly. I also only had one vial of blood taken! The Bad: Waiting in a waiting room full of coughing and sneezing. The ugly: The pink paper robe.

Stand Up for Yourself.

I don’t know what it is about me, but when I feel like the masses are being slighted, I feel compelled to take up their cause and fight. I call this my inner Norma Rae. Have you seen that movie from the late 70s? The one where Sally Field starts a revolution of the textile industry by standing up holding a big, bold sign that says “UNION” on it?

It was hard. It was unpopular. It causes trouble at home and at work. But it’s the right thing to do, so up she goes. Sign over her head. And that leads to a revolution. Or at least that is how it goes in the movies.

Standing up. We all have to do it.

Standing up. We all have to do it.

The last few days have been Norma Rae days for me. I am sure I didn’t start a revolution, but I am also sure that the doctor who got me so wound up will at least think of my face and hopefully my words the next time someone shows up swollen, aching, and desperate in the name of Lupus. I have heard of people having amazing relationships with their rheumatologists. The kind of doctors who head up collaborative care among doctors to get patients well and thriving. But hearing about it is where it ends for me. I have a stand out primary care doctor and the kind of dermatologist that you could trust your life to, but I have never had a rheumatologist to write home about. The one I started seeing recently though, simply takes the cake.

I started seeing my new rheumatologist a few months ago when I got a new health insurer. We didn’t totally hit it off, but it wasn’t too bad. She was stand offish and she made a sour face when I showed her the vasculitis on my arm, but I am sensitive about that, so I chalked it up to my thin skin (ha!). When I left her office that first day, she sent me for blood work. Fifteen vials of bloodwork that took four sticks, the last one in my hand (ouch) to get ahold of. I thought I was going to pass out from sheer exhaustion. After that, there was a host of small things (mis-dosed medication, another wasn’t available, I had a reaction to a new generic, and so on) that fell like disease dominos and landed me smack in the middle of a flare–the most painful one I have had to date.

I suffered for a few days before emailing my doctor. She put me on a TON of prednisone and said to keep in touch. I took the ton of prednisone and it was like a beast was unleashed. In addition to a racing heart, I was so dizzy I was losing my balance, I was exhausted but couldn’t sleep. AND I WAS A MEANIE. At the prompting of my poor, suffering boyfriend, I went back into see the doctor face to face.

This is where the UNION sign comes in.You see, I had already had low expectations for this doctor caring for me. But when she met my sick, sad self with a pile of pain pills, and “Well, that’s Lupus. Eventually the flare will be over and you’ll feel fine.” I kind of lost it. I asked her to consider that people are more than the sum of their symptoms and test results. I told her we weren’t working out (like we were dating or something), and I did all of this while hysterically crying. In my experience doctors aren’t huge fans of tears. They are a more tightly laced lot. My rheumatologist looked horrified, but all I could think to myself was, finally I am getting through to her.  I eventually pulled myself together enough to finish the visit and head down for more blood work. I wasn’t done though because all of that went badly too.

I just finished my follow up email to her (this is how she prefers to communicate) and it reads like a ranty break up letter. Whether or not she even reads the damn thing, I had to say it all. I had to say it for every person who ever has to sit in a phlebotomy lab and get told, “You are a slow bleeder. I am going to have to stick you again.” I had to say it for every person who has had to sit down to dry their hair because showering took just about all of their energy. I wanted to say it for every person who didn’t have the strength to say it for themselves. I had to say it for everyone who has Lupus. 

God save the world when my hands don’t hurt too much to type.

PS: From the “well ain’t that a kick in the head” files, I just found this article from a few years ago: Real ‘Norma Rae’ dies of cancer after insurer delayed treatment

“The North Carolina union organizer who was the inspiration for the movie “Norma Rae” died on Friday of brain cancer after a battle with her insurance company, which delayed her treatment.”
Health Insurance. That is another post for another day.