“My doctor thinks I might have lupus.” It’s a statement I’ve heard many times from various family and friends over the last few years. And my first response is always, “was it your primary care doc or a rheumatologist?” If the answer is primary care, my next response is always, “don’t panic!” It’s a long road from thinking you may have lupus to being diagnosed.
If you find yourself in this club, here is a list of 11 things you can expect along this journey.
- They take a lot of blood. A LOT. And if certain markers are present in the first round of testing, or a lab value needs to be quickly confirmed, you’ll be coming back another day to give more blood. I’m lucky to live within walking distance (yeah, I still drive every time)–which is great. If you live in an area that lacks specialty care, you’ll be driving. A lot.
- You’re going to pee in a cup every time. Time your liquids well.
- What shows up in your blood work can automatically “include” you as someone with autoimmune disease (or disease potential). But even if your blood work turns up nothing, and you still feel a certain way, they’ll want to see you again, and they’ll help you uncover a cause. My bloodwork brought me into the club, but since then I’ve had mostly normal labs. A lot of my aches and pain stem from fibromyalgia, which doesn’t show up in bloodwork.
- The blood tests will make no sense (unless you’re a medical doctor). Be prepared for words like antiphospholipid antibodies, DsDNA, Lupus Anticoagulant, RA factor, ANA titer, ESR, Sed Rate…I could go on. Be sure your doctor explains your results well, and don’t be afraid to ask a lot of questions. If markers are showing up that indicate autoimmune illness, bring a friend with you. Having another person in the room as another set of ears is immeasurably helpful. This website helps.
- Sometimes your doctor will see a clear cut diagnosis in your test results. But it’s likely that they won’t. If your results show certain factors and lupus is suspected, keep in mind there is no single test to diagnose lupus. Your diagnosis will be based on a number of factors.
- If lupus is suspected, you’re going to feel like a guinea pig. You will work with your doctor to come up with a treatment plan. You’ll talk about medications, lifestyle adjustments, supplements, and support networks. You might get put on prednisone right away. But another big part in the beginning of this journey is getting referrals…
- You’re going to be referred to specialists. My doctor recommended I see a neurologist and cardiologist. I had a bunch of scans and learned I was claustrophobic seconds into being inserted into an MRI machine. I also did two sleep studies. Because Plaquenil is one of the first drugs they’ll try, I needed to see an eye doctor (although it’s well-tolerated, a small percentage of people have eye issues). Lupus is a systemic disease and multiple system involvement (even the potential for) will require seeing multiple specialists.
- You’ll be spending a lot of money. It is what it is. Be an active participant. Consider your doctor’s advice and try to understand risk factors. On more than one occasion, I’ve asked my doctor to triage his recommendations so that I could afford it. He outlined the Must Do’s first, then gave me my What’s Next options. It helped.
- Prepare to get a second opinion. You’re not cheating on your doctor. Most, if not all, would encourage you to get a second opinion.
- You’ll be creating a long term relationship. Make sure you like and respect your doctor, and make sure they connect with you and show you equal respect. Consider personality types and gender. I see my rheumatologist more frequently than I see my parents. I’m stuck with my parents (haha). I have a choice in my doctors. (I live in a major metropolitan area. I realize if I lived with my parents in their rural community, I would need to take whatever doctor I could get.)
- Your doc alone won’t make you feel better. It takes a team. When I started this journey, I erroneously thought that my doctor would give me medicine, I’d take it, and I’d be better. I’ve never been so wrong. Autoimmune disease requires lifestyle changes that you may not be willing, able, or ready to make. You’re going to get to know yourself. Really well. It’s on you to get enough rest and reduce your stress. I’ve been doing this since 2011, and I still haven’t mastered it. But I keep trying.
I have a magnet on my refrigerator that says:
“Creativity is not a talent. It’s a way of operating.” – John Cleese
It’s my reminder that, with the right attitude, each and every struggle I face is manageable. But I forget. I fall into old patterns of Woe is Me and Nothing Ever Changes and My Butt Looks Ginormous in These Jeans. So I’m expanding on this thought by sharing with you this awesome list of 21 Ways to Unlock Creative Genius (courtesy of Entrepreneur). I’ve stolen six (though all apply) and added some thoughts on improving daily operations when you live with a chronic illness like lupus.
- “Be a Copycat – Build on the Classics.” Whether you’re newly diagnosed or you’ve been living with chronic illness for years, find a mentor who you think is living life well. Here are a few people I follow, to name a few: Sara, Amanda, Tiffany, and Marla.
- “Pick the Worst Idea – Not All Risks are Bad. I recently took a big risk. I joined OrangeTheory Fitness (because the best way to go from couch potato to fit is to over-do it, right?). Well, I learned the hard way how not to do it. But then I spoke with my BFF, my doctor, his nurse, and trainers at OTF. And now that I know the best way for me to approach this one-hour intense workout, I’m six workouts in and feeling awesome (it’s pretty cool to feel sore because you exercised, not just because you exist!).
- “Ask Three People – New Perspectives Bring New Approaches.” Finish this sentence: OMG I HATE MY CHRONIC ILLNESS BECAUSE _____. Shout the first thing that pops out of your head. Now, find three people you trust. And ask them what they’d do to minimize the impact of the problem you identified.
- Look Outside Your Industry – Learn What Others Can Teach. Do you normally follow patient-centered blogs? Read up on physician perspectives. Die hard yogi? Read up on running. Agnostic? Check the news to see what the Pope has been up to. You never know what you can glean from seeking out new perspectives.
- Reset Goals – What Do You Really Want? The goals I set in my 20s look far different from those I am working toward in this my 39th year. Chronic illness is a big reason why. And in many ways, it’s such a blessing. Back in the day, my need to achieve was so great that I never enjoyed anything. If I was making breakfast, I was thinking about dinner. If I achieved something, my thoughts would be taken over by 1) fears of my accomplishment getting taken away, and 2) wondering incessantly about what was next. My slow down may have been forced, but I’m far better about living in the moment. It makes me a better friend, wife, mother, and writer. I’d love it if my old body could meet this new mind of mine … but I’d probably just go back to overdoing and overachieving. (My last big dose of prednisone and it’s crazy-energy surge are evidence of that!)
- Start Over – Scrap Everything. What’s not working for you? Start small. Just last night I tripped for the hundredth time over a laundry basket that frequently lives at the foot of our bed. The path between said laundry basket and my dog’s giant bed is not big enough to maneuver in the dark. It only took me three years to figure it out that I could just move it (further evidence that I’m not exactly the brightest bulb…).
Chronic illnesses like lupus shine a light on your life in ways you can’t expect. But if you keep your head about you, if you look at your life like a business or project, if you decide your creativity is endless, you’ll find ways to live better, live smarter, and live healthier – despite the diagnosis on your medical chart.
I’m just one person. But my ego is big enough to speak on behalf of the 50 MILLION Americans suffering from autoimmune disease. So here goes: We’re sick of seeing doctors. We’re sick of writing our blogs. We’re sick of being advocates. We’re sick of being sick. And so are the people who love us.
We Need a Goal
A wise man once taught me about the Big Hairy Audacious Goal. I think our community needs a BHAG: Get us healthy and kick us the heck out of our overtaxed health care system.
If we cured autoimmune disease tomorrow, that’s $100 BILLION of direct health care costs wiped away. And that’s likely a conservative estimate. The $100 BILLION figure is based on the National Institute of Health (NIH)’s study on the 24 autoimmune diseases for which good epidemiology studies were available. As one who is stuck in lupus limbo, my investments don’t count toward those costs. And neither do my friend Racquel’s, who is now disabled due to a rare autoimmune condition that doctors are just now beginning to recognize and study. She’s in her 30s raising four kids and running a small nonprofit organization. And every month her meds cost more than most people earn in a month.
We’re Making Headway
- Last month, advocates from around the country descended on Washington for a special Congressional briefing on Capitol Hill. There they presented a new lupus research plan to guide the nation’s scientific community toward a cure! Lupus Colorado’s Executive Director Inez Robinson attended, along with our partners in the Alliance for Lupus Research and the Lupus Research Institute. The new National Institutes of Health (NIH) Action Plan for Lupus Research presents a comprehensive roadmap that builds on decades of NIH research efforts, yielding a wealth of new information toward improving understanding of lupus.
- Just this week, a possible trigger for lupus was identified, thanks to research funded by Lupus Colorado’s partner Lupus Research Institute (LRI).
- Other research from 2016 is indicating that only 20% of lupus is due to genetics. And there’s evidence that lupus patients have a unique microbiome, or bacterial makeup in their gut.
- There’s lupus research funding available.
- Personalized treatment of autoimmune disease is on the horizon.
Kick Us Out with a Cure
We’re ready. And you can help. Supporting lupus research is a win for us all. Since lupus is a systemic disease (meaning it messes with pretty much every system of the body you learned about in middle school), the more we know about it, the better off we’ll be to treat a plethora of diseases. In the autoimmune disease realm alone, there are 80 defined diseases. And an increased understanding of immune system activity can benefit us beyond lupus — people who receive transplants, AIDS patients, cancer patients, and patients of infectious disease are also likely to benefit from increased knowledge.
You can help by supporting organizations like Lupus Colorado and the Lupus Research Institute. Join this BHAG and kick us out!