So wait a second! Did I actually ever have lupus? is what I found myself blurting out to my rheumatologist at a follow up visit. My major complaint was joint and tendon pain, especially in the morning and at the end of the day. Deep down, I believe that’s most likely due to the effects of the hormonal chaos happening in my body thanks to perimenopause, but I mentioned it to him because it’s also a symptom of lupus. As my doctor was typing my symptoms into his laptop and informing me that he wanted to order x-rays just to be sure (of what I’m still unclear. I always think of a million things I should’ve asked after I get home!) something he said caused me to wonder about my diagnosis. In response to my question he informed me that, despite what I was told a year ago, he didn’t think I had lupus. Wait! Whaaat? 

Obviously I was dumbfounded so I expressed my confusion. Apparently I never fully fit the criteria so it was never a definitive diagnosis. (Say what?? That’s not what my chart says!) Yes I displayed several signs that pointed the doctors in that direction (positive ANA at first, high inflammatory markers, heat sensitivity, and pericarditis), but he said there was too much gray area to definitively say that I have lupus. According to him, for 10% of his patients Lupus is obvious, for another 10% it’s obviously NOT, and for the other 80% they live in the gray area. Yay me! I’m living in the gray once again. 

He believes I have some autoimmune issues going on, but there are still too many missing pieces to the puzzle. The more I think about it (and you know I’ve been thinking about this way too much) the more I’m convinced I’m dealing with separate issues that may have nothing to do with autoimmune disease at all. Was I dealing with long Covid all along and now almost 3 years later, it’s finally out of my system? The pericarditis has been silent (thank God) and my blood work returned to normal this past fall after focusing on a hyper nutritious diet. Is the lingering joint pain simply due to my hormones fluctuating? 

In a few weeks I’ll have x-rays done to check the health of my hips and feet as well as blood work to see if anything has changed. You can safely bet for my next follow up I will be armed with a list of questions I’ve been jotting down ever since I left that appointment. 

I don’t know why it bothers me so much to hear I don’t have lupus. Most likely it’s because I’m back in the gray area of the unknown that I thought I had exited a year ago. Diagnoses explain things. It gave me something to go on. I liked having an explanation for why the heat destroyed me last summer, or why it hurt to sleep on my side. Now I’m back to the “Well, it could be this or it could be that.”

My mind tortures me with questions because I want to know exactly what’s wrong, why it’s happening and what I can do about it. I’ve said it before —I hate roller coasters and this has been an endless ride. Last year, with a diagnosis I felt like the ride had ended, but now it’s as if I was led into a false sense of security, only to be forced to ride it yet again.

The good news is that regardless of the cause (Covid, lupus, perimenopause, or an autoimmune condition we haven’t identified yet) my doctor assured me that everything I’m doing (running, lifting, eating healthy) is extremely helpful for any and all of those possibilities. Obviously my focus on nutrition through a raw, plant-based diet last fall when I wasn’t feeling great, helped extinguish the fires I had going on and helped my labs return to normal. (Maybe I should go back to that?) I think that’s likely part of the reason my doctor thought it was never actually lupus, because my blood work returned to normal. But what do I know? A rheumatologist job is to put together the pieces of the puzzle and regarding mine there aren’t enough coming together yet.

 I hate the fact that I have to see so many doctors – rheumatologist, cardiologist, Gastroenterologist, gynecologist – who for the most part consider symptoms separately. It’s great to have someone on my team who is an expert on the heart for example, but as soon as I ask if something hormonal could be affecting my heart, he refers me to a gynecologist. If I complain about my heart, they tell me to see a cardiologist. Ugh!

When so many of the symptoms I’ve experienced over the last three years could be attributed to a variety of issues, it makes a definitive diagnosis extremely difficult, especially when different doctors think different things. The back and forth drives me crazy, especially when it doesn’t provide any definitive answers. 

At one point I was referred to a neurologist to rule out neurological causes of certain symptoms and the only thing he provided me with was a diagnosis of anxiety. He didn’t like that I had so many questions and ultimately he wondered why I was even there (because my rheumatologist told me to!). Needless to say I crossed that doctor off the list.  Just for fun I printed out my patient portal notes from the past two years and it blows my mind to see all of the different diagnoses I’ve had.  I’ve consulted SO MANY doctors. Are they all just incompetent? I’ve learned that the only thing I can reliably expect from any doctor’s visit is the unexpected. 

I’d love to see a holistic or functional doctor but my insurance doesn’t cover it, they’re extremely expensive and the at home tests I could do aren’t available in NY. Our system is so messed up! It shouldn’t be this complicated!

It’s been a sobering lesson about letting go of the need to control everything and having all the answers. The bright side is, I’ve learned to be a better advocate for myself, I’ve educated myself about my body and how to treat it to increase my chances of preventing/reversing disease, I’ve learned how crucial faith and mindset is when faced with challenging circumstances, I appreciate the little things more and I’m definitely grateful for things I used to take for granted. I also speak up more and have a desire to support and encourage others who are dealing with things I have firsthand experience with. I’ve learned the power of telling our stories and being vulnerable and developing empathy.

So even though my mind is still questioning What the heck? I’m starting to let go of my frustration. 

In the meantime, I’m going to thank God that I don’t definitely have lupus, continue to monitor symptoms, and give my body the best chance at staying healthy by eating well, running and lifting weights. I’ve always loved an adventure, and this is proving to be quite an interesting one!