Most high school kids are focused on grades, hobbies, gossip, friends, their first loves, first breakups, “mean girls” who are your BFFs one day and turn on you the next, and maybe where they might go to college.
At 15, I was borderline anemic, so I was having frequent blood tests done. I was getting sick a lot, and one time I thought I had strep throat, so I went to the doctor. I got treatment, but the antibiotics didn’t work and I still had a 103° fever (so no playing basketball). So we figured something was up.
My mom took me back to my Primary Care Physician, and they said it might be something with my blood. So I went to a blood specialist, a hematologist. The hematologist told me I had signs of “some kind of disease,” so I was then referred to a rheumatologist. There, at the rheumatologist, I was diagnosed with Systemic lupus erythematosus (SLE). Yeah- it was a flareup- not strep- that had been attacking me.
Lupus is an autoimmune disease, so it attacks your organs and whole body the way your immune system is supposed to attack something like a cold. But my Lupus basically made my own body my enemy- turn against itself. Like mean girls. But even less predictable or manageable, and with higher risk of actual death.
Soon after being diagnosed I was sent to a nephrologist, a kidney doctor, who informed me that me there was protein leaking out of my kidney and they didn’t know why. Then… they did know why. I was diagnosed with kidney disease (Lupus nephritis). So, for those of you keeping track, that’s now two kinds of Lupus. The all-over kind, and the chronic kidney disease kind.
I also have rheumatoid arthritis (RA), so I pretty much have the trifecta, I have what most doctors call “Rhupus,” a combo of RA and Lupus.
During flareups, it’s painful to even move. My joint pain is really bad. I know it’s because of the Lupus, though RA has so many of the same symptoms, which makes Lupus hard to diagnose. It shows up like so many other autoimmune diseases, that a lot of the people who have Lupus don’t even know it and they’re just living in mystery. My bloodwork happened to be spot on for Lupus, but if it hadn’t been then it could have been misdiagnosed as fibromyalgia, mixed connective tissue disease…
My joints did hurt from the RA before, but mostly just with strenuous activity, or if there was a change in the weather, which happens often in Texas. But my doctors and I know the difference. The pain with Lupus is way worse. Joint pain, swelling, inflammation… and not from doing anything extra. Yeah, not fun. And I have chronic fatigue, which means I am always exhausted, even when I get “enough” sleep.
Let me tell you, that’s just awesome for teaching 4th graders! That’s what I do now. I love these kids, and I really love the team I work with. My principal is so awesome, too. I remember disclosing my Lupus to her; I didn’t have to, legally, but I really wanted her to know that, if I called out sick, it was because I was having a flareup or was in the ER or something. Actually, majorly, legitimately unable to attend work.
A flareup is when a Lupus patient has extreme joint pain and swelling that you can’t walk, and there’s a fever. A normal fever for anyone else might be over 100°, but for me, anything over 99° is a worry because my body doesn’t know what to treat- where to send the attack. So, my whole system gets shut down.
Even without a flareup, there are some days when I am crippled by exhaustion. I’m not any good to the kids like that. In addition to my principal, my fellow teachers are also such a source of strength for me. I disclosed my Lupus to them, too, because I wanted them to know I wasn’t leaving school early sometimes because I felt entitled- it was a medical necessity. I had to tell them about my fatigue, “look, I know I look normal, I’m young, I look like I should be OK, but deep down if you look at all my cells, they are fighting very hard to survive.”
Not only were they as understanding as my principal, but they really rallied around me. They cover some of my tasks when they see me looking weak or if I ever ask for help with something that could be as simple as walking my class to the end of the hall. That’s really something they did for me once when I had a joint flareup.
The community around me makes me feel not alone, and like I’m actually able to make a difference to my students. I really love teaching them and my team makes it possible!
I’ve also been seeing the same specialists for almost ten years now. They know me so well, they’re like family. They rally for me and have even come out to Lupus walks I’ve organized in my community. Their support has meant so much to me- I’m not just a patient to them; I’m a person they are there for. I guess when you see the same patient for a decade, you form a different level of relationship.
The relationships, community, and family support make a huge difference for me, just in feeling hopeful every day, and knowing I don’t have to go through this alone. I don’t want anyone to go through this alone. My Mom actually did a ton of research, looking for Lupus support groups. The closest one was in Dallas, which is 3 hours away from us. So, my Mom called to ask the Lupus Foundation of America if we could start a local chapter in Killeen.
We ended up getting about 10-15 members that came consistently on a monthly basis to share advice, like about natural remedies or recommending good doctors. It was a small group, but it was so powerful to just have that community feeling.
When we did our first awareness and fundraising walk, I couldn’t believe it ! We had over 2000 walkers come out with us. They had family members or friends who had Lupus in Killeen and the local area, and they came to show support. I did this walk for several years but then the people who had gotten involved were sick. It’s a lot for us to take on to both need the support, and organize the efforts to provide it.
Our little group still finds each other on Facebook and gets together for coffee about once a month, but I would love to see some of the pharmaceutical companies, who help us with treatments, get more involved! We could really use the support in building those support systems that are necessary for us to thrive.
I do appreciate the pharmaceutical companies who are doing research to help people like me. I know they’re working on it. My family can’t find a link even though Lupus is supposedly hereditary. My 23 and Me study didn’t show anything. And the Lupus Foundation of America’s tagline now is “Help Us Solve the Cruel Mystery.”
I’m 24 years old now. I’m relatively stable thanks to my medications, but it’s been a journey to find what works. In the year 2017, when I was 21 and about to graduate from college, we thought I’d need chemotherapy just to keep my kidneys functioning. This put my family through so much stress. My mother hated seeing me in pain and knowing there was nothing she could do to take it away.
When I have a flareup, generally, I don’t go to the doctor because there just isn’t anything they can do besides prescribe more medicine for the pain. If it happens outside of regular doctors’ hours and it’s bad, they tell us to just go to the ER. At the ER, when I tell them I have Lupus, they run general tests and check my kidney functions to make sure not too much protein is leaking out.
Right now, I’m “OK.” Well, I mean, I’m not really ok, but I’m “Lupus OK.” And that’s an improvement. But it’s also hard to tell. I know to go to ALL of my doctor’s appointments, because Lupus can be a “silent killer.” It slowly and quietly eats away at my tissue, and it might not be until I have a problem with my kidneys or other organs that I even notice. So, I make sure I’m at every appointment and let my doctors know every little thing.
Especially because, at 24, and recently engaged, it’s on my mind that I’m at what they call “birthing age.” I’m fortunately able to be a good partner and friend and family member, and I teach my 4th graders, but I also want my own kids someday. The doctors tell you that, if you want to have a kid you have to tell them right away, because the medications I’m on can be deathly to a fetus. I’d need my kidneys to be working as well as possible because they’d be filtering for two, so I’d need my doctors to get really creative with me.
If it weren’t for doctors being as dedicated as they have already, I’d still be struggling beyond “Lupus OK.” When I was first diagnosed, the first thing I was put on was just the steroid Prednisone. It was awful. I was 15 and I gained like 20 lbs. fast and I was just in tears. Then I was also put on Plaquenil, which is kind of like a water pill to help with the joint swelling.
Then my doctors started getting really creative. In 2016, I started CellCept, which I’m still on. I started taking this twice a day (a total of 6 pills) to help my kidneys. Now, this is a drug that’s usually for kidney transplant patients, but something in the drug helps kidneys, and my kidneys needed help, so they tried it and it worked. At the most, I was taking up to 8 pills per day (500 mg each) and now I’m back to 6. Kidneys are good now, so I’m off Prednisone unless I have an emergency situation. I’m happy about that because I’m starting to lose weight!
The other creative treatment my doctors worked with Pharmaceutical companies to figure out for me was Cymbalta. When I moved home after college, and moved into serious work teaching full-time, I was hit with flareups after a period of remission. When I had a low-stress reception job, or even when I was student teaching, I was able to go to the gym 3x per week, lift weights, go out with friends. The flareups meant that my Lupus was active again, and it took all of that away from me, and that’s when my doctor suggested Cymbalta.
This is actually a drug for depression but that’s not what I’m on it for. It targets your receptors, and one happens to be a pain receptor, and blocking it helps me function and keeps me in a happier mood, which is always nice, because Lupus can get you kind of blue if you let it. The lack of a cure, the helplessness, the unpredictability of flareups. And it works, so I don’t care what it’s supposed to be for. Although it works that does not mean that I do not have joint flares anymore. Cymbalta is a great drug and works amazingly at blocking the pain and making it bearable.
I count Cymbalta as one of my blessings now – right up there with my job, my fiancé, and just having my family support me like no other. Like, when I want to try a diet, everybody tries it with me- so I know I have it better than some people and I’m grateful. I’m not sitting at home going, “why me?” And I’m grateful for that extra boost from Cymbalta- it’s not why I take it but it does help. It’s worth so much to me. But it is expensive, too.
Right now, with really good insurance, I still pay $80 a month out of pocket. I’m a teacher, and that’s not a ton of money but it also isn’t nothing. I’d love a $10 coupon every now and then to help with the co-pay costs! And, again, that’s with insurance.
I actually know exactly how lucky I am. One month, when I was transitioning over to my own adult insurance but we hadn’t informed the pharmacy yet, the bill for my medication for one month was $7,000. That would be a real hardship if I didn’t have coverage. As it is, in most cases, I try to take generic medications. Because the expenses do add up, and it’s often almost the same. With my beloved Cymbalta, the name brand really is the best so I take it.
The generic CellCept (mycophenolate mofetil) I’m still on is also working to keep my kidneys “Lupus OK.” It’s essentially like chemotherapy in a pill, and it’s an immunosuppressant. I wish there were something I could take that would only make me better and not also further compromise my already confused immune system. I already will catch every cold. If my 4th grade kids get a general cold, I’ll get a cold and that’ll quickly turn to bronchitis. It’s never “just” a cold.
I know how blessed I am to even have medications that work. But I do have some more requests, if I may ask the Pharmaceutical industry for some more support! Keeping stress down, moving my body, and staying healthy are important for my quality of life. I’d love to see a yoga class in the park sponsored by Cymbalta or one of the other medications I take. I’d love to see more community involvement to begin with.
And better patient education! For example, CellCept causes insomnia, Plaquneill can cause vision loss, and just about any medication used to treat Lupus can cause infertility. Even though these are things I read on the bottle, it’s not always clear or easy to understand. It would be great if you could post free content on social media about WHY your drug is better than others to save patients the energy of doing all our own research. We’re doing it anyway- we’ll understand you. Just make it accessible to us. And BE HONEST. When you tell us the downsides, we will trust you. We know there’ll be some; we just need to know what they are. When we trust you, we trust your medicine.
Come out to be with us. You host the support groups and sponsor the walks. You organize them for us. Put your name on the kinds of sponsorships that would mean something to our quality of life.
Actually, I’d love for you come out and do an event and actually come find Lupus patients and even just explain what the side effects will be like in person! And I get ALL the side effects of all the drugs. Hair loss, weight gain… I’m like a magnet for them.
So sometimes this makes me feel like trying to be rebellious; I just once in a while want to feel “regular OK,” not “Lupus OK.” So sometimes I try to kind of take myself off the medications, try “natural remedies,” but I do really need to take them. And my family doesn’t let me get away with it for too long! Without the medications I would be so low-energy- like no energy at all. And I couldn’t get things accomplished. Now, I’m a real planner and I’m super organized, so if I’m off, my family will notice RIGHT away.
For now, I know I have to settle for being “Lupus OK.” But I do really want more from pharmaceutical companies, if at all possible. If there can’t be a cure yet, please at least come and be with us. Community support really does go a long way towards making Lupus… ok.