“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.
1. A “sick” friend. If you’re blessed with a diagnosis, then by garsh, you need to find a friend with something similar. Only your sick friend will understand the uncomfortable feeling of everyone on staff at your pharmacy reaching for your prescriptions without needing to ask your name. When your sick friend says, dang, that sucks, you know she gets it. Being in a constant state of sickness steals your rationality. It takes a sick friend to call BS, say, when you’re constantly looking on the bright side. Your sick friend is the one who says, it’s BS that you feel like this, and it’s okay for you to say so. (Note this sick friend will also call you on any over-the-top pity parties or irrational dropping off the face of the earth.)
2. A creative outlet. Find what makes your heart sing. Maybe it’s knitting. Maybe it’s coloring in your adult coloring book. Maybe it’s using your imagination to find ways to make the crap that frustrates you most, better. And now please—do not give me the song and dance about “not being creative.” Just because your high school art teacher didn’t marvel at your genius doesn’t mean you can’t live a creative life. My favorite definition of creativity is from Bill Moyers (as quoted by Brainpickings): “Creativity is piercing the mundane to find the marvelous.” So what if your creative outlet is organizing your sock drawer. If it feels marvelous to you, then it surely is.
3. A health advocate. My primary care provider has gone to bat with insurance. She’s held my hand while I cried. She’s comforted other patients by telling my story of things we’ve found together that have made me feel better. Recently attended a gastrointestinal conference and was told about a probiotic strain that was good for IBS-C (one of my many diagnoses). She stood in Whole Foods for 30 minutes looking at every brand of yogurt strain to find one that contained this particular strain—then told me about it straight away! (Thanks, McKenzie!)
4. A basic trust in the universe. Or, a healthy existentialist attitude. Whether you believe the world is in constant motion to bring you to your highest and best—or if you believe the world is indifferent to you so it’s on your shoulders to try to make the most of any situation—the comfort gained from leaning inward toward your essence is immeasurable.
5. Child’s pose. When everything else fails, and you’re not sure about anything, get down on your knees and put your head to the ground. If this is too painful, and sometimes it is for me, try a supported version. This is medicine I use daily. And it works. No matter how angry or sad or frustrated or overwhelmed I feel before, I feel immensely better after spending time in this yoga pose of surrender. I suspect you might, too.
Pain is inevitable. Suffering is optional.
I have three sources of energy. Sleep is not one of them. I pretend it is by monitoring all aspects of my slumber, trying different bedtimes and wake times and room temperatures and routines, diets and sleep apnea treatments and light therapies and doctors, but here’s the sum of what I’ve learned: It doesn’t matter. I’m still chronically tired.
I feel rested in three hour increments. It doesn’t matter what I do during those three hours: Somewhere between 150 to 210 minutes after my last bout of sleep, I’m exhausted.
My Sources of Energy
• Source 1: Adrenaline. Lately my adrenaline rushes come as a reactionary response to negative stimuli. Usually a deadline—as simple as an article that’s due or the refrigerator is devoid of anything fresh. My favorite (ha) is the Shame Deadline. Maybe you’ve experienced it, too: the laundry in the washer is beginning to stink; your child cries when you stuff her feet in her too small athletic shoes; you haven’t left the house in 3.5 days.
• Source 2: Sugar. I’m in a constant struggle of managing blood sugar and managing a stomach that hates most food that enters it (thanks, IBS). Veggies or protein; sugar or fat, it matters not: I can feel hungry and crash, I can feel satiated and crash, I can eat greens and crash, I can eat dairy or chicken breasts or tofu or legumes and crash; I can eat Reeses Peanut Butter cups or the gluten free almond donut served at my favorite coffee shop and crash. Can you guess which one gives me the most energy, fast? I’m fully aware that eating sugar and carbs will spike my blood sugar. But I’m crashing no matter what I eat. Might as well ride a momentary high.
• Source 3: Caffeine. Oh, how I love thee. Without you, I wouldn’t get my daughter’s lunch ready or get her dressed on time or ever comb her hair. I never leave my house except for the search for your glorious head rush. You hold my eyes open, as if little toothpicks have been jammed between my eyelids. I might as well be asleep, for all the cognitive ability I have in those shaky moments where you let me forgo a nap, but you get me through the day. Thank you.
I know so many of you will argue—correctly—that I’ll feel poorly as long as I ride these highs. I’m sure you’re right. But unless you’ve been forced to live in three hour increments, and unless you go to the doctor every three months to make sure your organs haven’t decided to maim you, and unless you’re going to take over my life long enough for me to completely wean my body off the only things that keep me going, then this is how life shall be for me. And until this mess is resolved, you can take my caffeine when you pry it from my cold dead hands.