Today marks five years since a doctor confirmed my lupus diagnosis. In early January of 2017, he told me he suspected lupus and when I returned three weeks later the blood work confirmed it. Technically, he called it “pre-lupus”, but I later developed more symptoms and he dropped the “pre” part of the diagnosis.
So, happy diagnosiversary to me!
Every January I am acutely aware that another year had passed, and this five year marker is hitting a little differently. To be honest, I’ve been dreading it. I thought my life would look different; I thought that treatment would have resulted in normalcy and progress after five long years have gone by. But I haven’t seen that progress, not in the way I want to, and I’m wrestling with that. Hard.
Of course, my lupus symptoms started before my diagnosis in 2017. The average time between symptom onset and lupus diagnosis is about six years. For me, the number was closer to three, although it was “only” about a year and a half between intense symptoms and diagnosis. It doesn’t matter how short it may have been compared to others; it was a rough time.
“I’ve been gradually getting sicker since 2014, but I was diving towards my personal rock bottom when 2017 started. I was exhausted all the time, my joints were painfully swollen, and my muscle-related pain was out of control. I was diagnosed with fibromyalgia in Germany in 2016 and told repeatedly that anxiety medication and weight loss would solve all my problems. Fortunately, my primary doctor in the USA disagreed with that sentiment and referred me to a rheumatologist straightaway.”
2017 Yearly Digest
In this post, I’m sharing a recap of what my lupus has looked like each year since my diagnosis. Five years is a long time, however, and a lot has happened. I’m going to focus on the lupus highlights such as medications I’ve tried, flares, switching doctors, new health issues, having two babies, and everything else my body has been through because of lupus. Although, if you know me and have read my content before, you know I tend to be wordy. There’s a tidy summary at the end if you want the quick version.
What has happened in the 5 years since my lupus diagnosis.
Year One: 2017
- I was diagnosed with lupus after a rheumatologist noticed my malar rash and immediately ran labs for lupus. Since he told me that was his suspicion, I had three weeks in between the initial appointment and diagnosis to google myself into a world of worry.
- Prior to that appointment, I only knew the word lupus because my father’s late wife had lupus. I didn’t know her well and she didn’t talk about it much, so that was all it was to me: a word.
- Receiving the diagnosis rocked my world; I couldn’t get past the fact that something was wrong with my body.
- I started Plaquenil (hydroxychloroquine) right away. I was equally terrified about the potential harm to my eyes from the medication side effects and impatient for it to start working (it often takes about 6 months to fully kick in). I had my baseline exam straightaway.
- I took this photo after I got home from my appointment where I was diagnosed with pre-lupus because, after my life-changing diagnosis, the doctor had asked if he could show his medical students my “incredibly classic malar rash”.
- In May, I developed chronic dry eye and couldn’t figure out why or how, but I felt deep down it had to be related to the lupus (and it was).
- I also finally demanded that my primary care doctor start me on treatment for my high blood pressure, which had been ongoing for nearly three years at that point. I don’t know if it was related to my lupus or my extreme pain levels, but I knew heart health was vital for a person with lupus. It was one of the first times I learned how to successfully fight for my own health treatment.
- I was also given tramadol (an opioid-like medication) for the first time, which helped, but not nearly enough. I tried meloxicam (an anti-inflammatory) but it wasn’t even worth the stomach pain it caused.
- I spent the summer suffering from intense joint pain, fatigue, pleurisy (painful lung inflammation), brain fog, fatigue, and neck pain. It was rough and felt hopeless. I thought I would never recover from the depths of that sickness.
- In July, I started Imuran (azathioprine), an immunosuppressant. I didn’t want to take it, but I was too miserable not to try it. Each pill filled me with terror. And nausea.
- Because the Imuran made me so nauseous (and I have PCOS), I didn’t realize I was pregnant until I was about seven weeks along. Starting a pregnancy without having a handle on my lupus was a bit scary, confusing, and I didn’t know how to best handle the situation.
- The pregnancy threw my rheumatologist for a loop, as he primarily treated elderly patients. He withdrew access to my medication because he didn’t know if it was safe. This sent me into a pattern of flares that were hard to get back under control.
- I eventually gained access to a good OB and a maternal-fetal medicine doctor that helped me get a prescription for steroids for the first time since my rheumatologist was not helpful at that point.
- I ended the year with many pregnancy appointments, trepidation about the future – with a baby no less, and wondering if it was possible that I’d ever feel “normal” again.
- 2017 will always be my year of diagnosis; the year when I first felt like my body was fundamentally broken and that it had betrayed me by attacking itself.
Year Two: 2018
- My second year of lupus started with my second trimester of pregnancy. It was confusing to add pregnancy symptoms to lupus symptoms, which had not been brought to heel before my pregnancy (which is the recommended way to go about it). There was so much overlap between pregnancy and lupus symptoms that I often didn’t know where an issue, such as swollen fingers, was originating from. I was still struggling to catch up on educating myself about lupus and pregnancy.
- I was still flaring often and the stress present in my life did not help. We moved into our home in January 2018 from an apartment. My husband was also traveling a fair amount for work at that time. I ended up overdoing it several times as I tried to unpack or do things for myself that he would normally help me with. This was when I first started to learn about pacing and the effects of stress on lupus.
- After my issues with my previous rheumatologist bowing out of his role in treating me (quite possibly because he was afraid of what he didn’t know about lupus, pregnancy, and the risk of medication), I was able to switch to a new rheumatologist who was well versed in lupus and pregnancy. She helped me during the last few months to get things under control and prepare for postpartum. I did have a hard time accepting the risk of the meds, but I learned it was better than the risk of lupus causing harm to my baby.
- I entered my third trimester and things got harder. Various pregnancy symptoms limited my ability to move around and sleep well, which in turn led to more flares.
- I was terrified about the statistics for poor outcomes in lupus pregnancies. I tried to celebrate every week that passed because it meant one more week I had grown a baby and kept him safe.
- I ended up developing intrauterine growth restriction and was induced at 39 weeks for that as well as concerns about hypertension.
- While I was proud of my body for accomplishing the immensely difficult task of creating a baby, I was horrified by how painful my birth experience was. I believe I have some PTSD from it.
- After birth, my son developed low blood sugar due to one of my medications and came close to needing a NICU stay, but was narrowly able to avoid it. Cue the beginning of thoughts such as: I’m a mom with lupus, my meds affected my baby, and my disease will continue to affect my child. He’s not yet 24 hours old and already I feel enormous mom guilt and I don’t know how to deal with it.
“The days after giving birth were a painful blur. Motherhood was hard for me from the first moment – not because of my baby, but because of my lupus.”
2018 Yearly Digest
- Like many women with autoimmune diseases, I experienced the dreaded six-week postpartum flare. It was bad. And after that first flare, they just kept coming in waves. It’s hard to take care of yourself properly when you’re caring for a newborn, and lupus doesn’t like when you don’t care for yourself properly.
- Thankfully, my new rheumatologist was ready to start trying different things. We increased my Imuran dosage to 200 mg (I was previously on 100mg during pregnancy), added more pain medicine, and used steroids more liberally.
- Each month brought a new flare and different pain. Caring for a baby was so much more physically demanding and mentally exhausting than I realized it would be. It was also all-consuming. It may sound silly, but I didn’t comprehend what it would mean or feel like to be responsible for them every second of every day – all the time. Eventually, I became so exhausted that I’d sleep through his crying (more mom guilt).
- Then, I had a flare that affected my knees so badly that I was unable to bear weight on them for nearly a week. I vividly remember how I knelt to search for a teether underneath the couch, and then the pain hit my knees so hard it was like an invisible punch.
- I was able to use crutches to get to the doctor. I learned at that appointment I couldn’t tolerate steroids at a level high enough to be effective during these types of severe flares. So we started the discussion of adding another medication, a biologic called Benlysta, to my treatment to help stabilize my health.
- The knee flare episode happened at the end of 2018, and I was fortunate to have a lot of help since it was pretty close to the holidays and several family members were available.
- One big highlight of 2018: I was able to travel to Curacao for 10 days despite lupus! It was a dream vacation.
Year Three: 2019
- Out of the five years I’m covering in this recap, I think 2019 was the year that my health was closest to stable. Not actually stable, but as close as it likely got to it.
- I started the year with a 7-month-old (and recently recovered knees, well, semi-recovered knees). Caring for my son at that age was easier than the early baby stage and not yet as hard as the toddler stage would become. Nonetheless, I found that caring for him full-time became overwhelming at this point –especially after he dropped his morning nap. So we sent him to “Grandma Daycare” for one half-day a week.
- Having a built-in time for childcare every week made a huge difference in keeping my lupus under control that year. It gave me time to rest, which is critical for everyone with an autoimmune disease, and it gave me time to work, work out, and go to the doctor.
- I spent a large part of the year searching for answers for my chronic neck pain, which I consider to be a secondary issue of my lupus. I believe that my neck pain originated from the years that lupus rendered me immobile before my diagnosis and treatment.
- I had a very stressful event that spring, as my beloved bird Koopa had surgery for ovarian cancer. My pet bird has been a critical part of helping me stay (somewhat) emotionally stable throughout the years of health struggles.
- In May, I was able to begin weekly Benlysta injections after months of going back and forth with my insurance and the copay programs.
- Benlysta helped a lot with my fatigue, but also caused insomnia, which negated its positive effects. I also began to lose a lot of hair. I barely made it to 12 weeks on the self-injections before I had to stop.
- Shortly after that, I received a letter that my rheumatologist had quit. This was completely unexpected; I was blindsided and felt abandoned. She had been caring for me over the past year and a half. She’d helped me through pregnancy and postpartum. Who would fill my prescriptions? It was an experience that left me distraught with worry and busy trying to figure out who would fill her shoes.
- Since I didn’t want to have a large gap in labs, meds, or care in general, I decided to see another doctor at the same clinic who had availability. I watched her take meticulous notes as she listened thoroughly to my lupus story, only to have my hopes smashed when she said she “would never change up my medications in the winter” (um, WHAT?) and that I’d have to rely on steroids although they’re a b-word. Yes, she cursed with a first-time patient – without even having enough time to gauge how I would feel about it.
- Even though I protested, she sent copious amounts of steroids to my pharmacy (at this point I had switched over to methylprednisolone, or Medrol, instead of prednisone). I was aghast at her insistence that I use steroids chronically instead of trying, um, literally anything else? But I filled the prescription anyway and, nearly two years later, still have nearly 30 of those pills left.
- Of course, I did not want to return to see that doctor. Thankfully, I kept searching and was able to figure out which medical practice my previous doctor had relocated to within our city. I made an appointment with her, but then quickly changed it after I realized that one of the best rheumatologists in our city had also made the leap to the new practice. It was rather sneaky to get in as an established patient and then switch gears to a doctor that had not been accepting new patients for years (I had been asking to see her since shortly after my diagnosis in 2017) but I don’t care – it was WORTH IT!
Year four: 2020
- My appointment with my new and amazing rheumatologist was at the end of January 2020. At the time, I was three weeks into the worst upper respiratory infection that I’d ever had (back then you were allowed to go to appointments if you felt just a bit sick). Was it COVID? I don’t think so, but we’ll never know for sure. It lasted for six weeks on and off and caused permanent tinnitus, as well as caused me to question how I would ever get better if I was always sick?
- I was amazed at the knowledge provided by my new rheumatologist. However, even though she is awesome, together we made a few medical decisions that unexpectedly caused several mini disasters in my life.
- First, I tried taking Savella (milnacipran), which is an SNRI, in the hopes that it would help my chronic neck pain, improve my quality of life, and ultimately reduce my lupus symptoms as a result. This was a catastrophe from beginning to end. I had almost every single side effect from the first day I took it – making it hard for me to function – and I never experienced pain relief. Then when I stopped it, about three months later, I had to go through terrible withdrawals. It was a big setback.
- Secondly, I decided to try a Nexplanon implant after talking at length with my doctor about what my birth control options were, since I did not tolerate birth control pills in the past (and I didn’t really trust them to prevent pregnancy, which is ironic if you know what happened later on in 2020).
- My Nexplanon was inserted less than a week before my city shut down due to COVID-19. Unfortunately, the implant caused my lupus to flare like I had not experienced since before my diagnosis. Even worse, the world was shut down. I could not get back into the medical office for six weeks – during which I suffered some of the most excruciating forms of lupus joint pain to date. I went through all of this without the help and accommodations that I would have had without the pandemic.
- When I finally got the implant removed, at my first appointment during COVID-19, the doctor said he had never seen such inflammation and dryness in such a young patient and that it was quite clear that an autoimmune issue was raging due to the hormones from the birth control. NEVER again!
- Finally, the third poor decision I made with my rheumatologist was to try Benlysta again since I was in the worst flare I’d ever had since starting meds for lupus. I was hesitant because it had been less than a year since I stopped the Benlysta injections due to their side effects. However, she reported that most people react differently to infusions and so I moved forward with infusion therapy to try to get my lupus under control again.
- Well, I reacted differently all right. Benlysta infusions led me to experience severe depression and suicidal ideation. I went through a very scary and dark time.
- I had to stop the Benlysta infusions. This made me sad because the infusions were helping with my lupus symptoms – especially the pain in my hands. My doctor had not seen a patient experience depression from Benlysta that didn’t have pre-existing depression. I could have tried treating the depression, but I didn’t want to treat a side effect. I wanted to move on to a different medication. Additionally, the suicidal ideation was too dangerous for me, and, while it is a known side effect it’s a rare one. Sometimes I feel like I’m just here to confound the doctors and be the patient with difficult to treat symptoms, no matter what the issue at hand.
- One month after stopping Benlysta, I woke up with my right eye nearly swollen shut. It was the end of August 2020 and I was alarmed because my eye was puffy, leaking discharge, gritty, painful, and I couldn’t see very well. It was clear that my inflammation was no longer under control and I was eager to start new meds – but I would end up taking several steps backward before taking one forward as far as medications.
- After many appointments with several different eye doctors, I found one who was right for me and knew what was going on. He was able to tell me that my cornea was inflamed from a systemic autoimmune disease in addition to having lesions that resembled Thygeson’s disease – a not so common eye disease. My right eye was covered in dozens of inflammatory lesions and largely did not respond to treatment with steroid eye drops.
- Well, my eye inflammation saga was further complicated with – surprise – a second pregnancy!
- I discovered my second pregnancy in October 2020 and immediately turned to all my doctors with the news, including my rheumatologist who sent me off to Duke University to see an ultra-specialist.
- The specialty rheumatologist at Duke ran all sorts of labs, including ones to test blood levels of my medications. Doctors do this for many different reasons – frequently, the reason is to see if the patient is complying with taking their meds before they agree to add more or different medications. I am super diligent about taking my meds. Nonetheless, I’m grateful that she ran these tests because we discovered yet another way that my body doesn’t work “correctly”.
- My lab results for Imuran metabolites showed that my body wasn’t metabolizing it in the normal manner. This meant that 1) it wasn’t very effective as a treatment for my lupus and 2) it was causing much higher than normal levels of harm to my liver.
- I stopped the Imuran the day that we got those results back, which was the day after Thanksgiving 2020 (and also the day after we announced our pregnancy). I had to stop it completely for three weeks, at which point the liver toxicity levels came down to an acceptable range, and then I continued it at a half-dose with frequent monitoring.
- Well, stopping my immunosuppressant for three weeks wreaked havoc on my already out-of-control eye issues. Despite already being on steroid eye drops, I began to experience a corneal melt, which means that my cornea was eroding from the inflammation in my eye. I started immunosuppressant eye drops (Restasis), took oral steroids, and began a lubrication therapy protocol – essentially, I was saturating my eye with special gel drops as often as possible.
- My eye doctor was worried, he even had me come in the day after Christmas to see if our methods were reversing the melt. I’m thankful he stayed on top of it. Despite everything, I still have a scar on my cornea. It all happened so fast after I paused the Imuran.
- While we have been able to bring the inflammation down slowly over time, it’s never really gone away and we have to keep close tabs on it. My doctor said I’m an unusual case (not the first time I’ve heard that!) and, over a year later, we are still struggling to keep my eyes protected from the inflammation that’s never gone into remission.
- Another issue that started when I paused the Imuran is that I began to experience dry mouth. Like, really dry. I had so much going on at the time that I didn’t put it at the top of my list to address with my doctors, but it did turn out to be quite significant over the months to come.
- I was fortunate to start Botox for my chronic neck pain in the fall of 2020, and it was a lifesaver since I did not want to take pain meds in high amounts during pregnancy (Botox during pregnancy is a complicated issue, and I’m happy to answer questions about my unique situation).
- I also spent a large part of 2020 taking my son to speech therapy, occupational therapy, and behavioral therapy. While these were immensely important and beneficial appointments, they also took up a great deal of my energy and increased my pain levels. The physical stress on my body from the twice-weekly appointments was not insignificant. My son also stopped napping altogether that year. Being a mom in 2020 was tough; we bumped our Grandma daycare up to two full days a week. That gave me the time I needed for all my appointments, including those long infusion days, but, unlike in 2019, the respite wasn’t enough to keep my lupus calm.
- This isn’t to blame my son in any way, shape, or form. My lupus was likely going to act up regardless. But I must acknowledge that the physical and mental stress of motherhood and pregnancy (plus the ever-persistent mom guilt) took a toll on my body and made it harder to do what I needed to fight against my lupus.
- I wrapped up 2020 in my second trimester of pregnancy (and the woes that came with it) and an absurd amount of appointments to monitor my growing baby, autoimmune blood work, eyes.
Year Five: 2021
- In January, I learned that I was pregnant with a second little boy! I continued to see the specialty rheumatologist at Duke to monitor my pregnancy as closely as possible to protect me and my baby.
- Well, by the time I was 22 weeks pregnant I had been on a half-dose of my immunosuppressant for about two months. So it was really no surprise that I was starting to have many lupus symptoms. My joint pain was flaring up, most noticeably in my hands, as it’s always been apt to do, and I asked the Duke doctor for help. She told me to take Tylenol.
- When I visited her at the beginning of my third trimester, I practically begged her for help. I explained that I couldn’t use my hands for things like opening pills bottles, putting my son in his car seat, or even pressing down on them to get my pregnant belly out of the bed. I was completely dismissed and I was scared at how my lupus was manifesting during my pregnancy.
- That doctor told me it was only fibromyalgia, she would never prescribe me anything for it other than an anti-depressant, and I walked out of her office that day nearly sobbing and shocked at her lack of compassion – even more so as she’s one of the world leaders in lupus and pregnancy.
- I had flashbacks to living in Germany when the doctors told me it was all in my mind. It was “just anxiety and fibromyalgia” and they wouldn’t help me. I thought I was abandoned.
- I thank God that she wasn’t the only doctor who could make that decision for me. I practically ran to my maternal-fetal medicine doctor, who completely validated my concerns about my inflammatory autoimmune symptoms and took action immediately.
- He called my regular rheumatologist right after that appointment and she was willing to put me on a new medication to get things under control. She also was willing to listen to me about my dry mouth concerns (which, at this point, I had waited about four months to bring up) and ran an early Sjögren’s panel.
- The Sjögren’s panel came back positive, which explained my dry eyes and mouth as well as a few other issues. I don’t have the more common Sjögren’s antibodies so it would not have been caught unless she ran the specific early detection panel. She went out on a limb a bit for me as I knew she was a bit skeptical about my insistence that I had Sjögren’s syndrome symptoms. But I was right! And I’m so glad she listened.
- Because of my Sjögren’s and pregnancy, I was able to receive a biologic medication called Cimzia. This is normally used for people with rheumatoid arthritis and I essentially was able to get it via a loophole; it’s not typically available to people with lupus. But it is considered one of the safest biologic medications for pregnancy.
- I was given a sample of Cimzia that I used when I was 32 weeks pregnant.
- I was ecstatic to have access to Cimzia. This attitude was such a drastically different one compared to how scared I felt when I started Imuran and Plaquenil. It shows how much I learned over the past five years about the difference that medication can make in my quality of life. I knew Cimzia came with some serious risks, just like the other medications, but my body was struggling so much I did not hesitate for a moment because I knew it was worth it.
- I was fortunate that my insurance approved Cimzia within a week – that’s lightning fast for a biologic – and I was able to take it for five weeks before delivering my baby. That’s not a long time, but I’m incredibly thankful for the Cimzia kicked in quickly because I needed to get myself back on track to the best extent possible before birth and postpartum. Even better, I didn’t experience any bothersome side effects from the Cimzia, which I believe is a first for me as far as medication goes.
- The end of my pregnancy was quite tough, but it wasn’t because of my lupus. The stress definitely affected my health, especially when things became more concerning. My baby started having non-reactive stress tests – one after another – and I ended up being admitted to the hospital at 36 weeks due to concerns. (You can read about why in my third trimester post). I delivered my second son at 37+1 in May of 2021.
- My birth experience was eerily similar to that of my first, and so were the hours following when my baby’s blood sugar plummeted due to one of my meds. I’m so thankful for the nurses who helped us get him back on track. On the day he was born we learned that he had a rare disease. A few months later, we learned that the rare disease came from my husband and that my older son has it as well. It was odd to me since I thought that any health problems they might have would inherently come from me since I was the sick one.
- The months after giving birth were a very stressful time. Between the unknowns of my baby’s rare disease and a plethora of medical issues emerging from my older son, I was constantly worrying about my children’s health. I only thought I’d have to worry about myself being sick, but now my kids were medically complex – and I wish I could take on all the sickness for them.
- I was very fortunate that I did not experience a postpartum flare this time around! I give all the credit to Cimzia because it was the only thing that was different the second time as far as my lupus treatment. I was certainly going through more than enough stress to validate a potential flare, plus I had postpartum complications that required me to go to the OB often throughout the summer.
- In September of 2021, I hit the six month mark of being on Cimzia. It had been able to reach its full potential and I was feeling just about as good as I have felt since receiving my lupus diagnosis (which is not actually good, just better than awful). Since I was feeling somewhat better, we decided to go ahead and cut out the Imuran completely so that my liver could have a chance to fully heal. But there were more twists in the road ahead.
- I had lingering abdominal pain after birth, and I convinced myself it was from an ovarian cyst due to my history of PCOS. It wasn’t, however, and my OB urged me to go see a gastroenterologist. I was so tired of going to the doctor, but I finally made an appointment after the abdominal pain was joined by frequent bathroom trips. I was diagnosed with IBS-C and endlessly frustrated at my lupus, which – in my mind – has to be the reason why everything in my body goes awry. I continue to question if the IBS could be a lupus or Sjögren’s symptom, a side effect from medication, a result of poor diet, or just my body being worn down by years of illness. Or is it more serious than IBS and we just haven’t seen the evidence of that yet?
- What I knew at the time, though, was that I was nearing a blockage according to my doctor and my x-ray and I needed to clear things out immediately. I followed those instructions to the letter and am carefully monitoring the situation.
- Not long after, I started to run into the dark side of taking a biologic. My 3-year-old began preschool in the fall of 2021 and quickly began to bring home colds. While this is normal – most young children bring home somewhere around 10-12 viruses during their first year of school or daycare – it is not normal for someone to get as severely sick as I did.
- I had never gotten sick while taking a biologic medication before. Previously, when I got sick while taking Imuran it would only be a little worse and a little longer compared to what other adults would typically experience. I could still function, it just sucked. This was not the case with Cimzia. Not only was I sick for the entire month of November, but I was frequently so weak that I could not walk at all. Throughout the month, I went to urgent care and primary care and everyone was very concerned about how lethargic I became. But there was nothing bad – it wasn’t the flu, or COVID, or RSV; it was “just” a cold and it knocked me out cold.
- I was sick for Halloween, Thanksgiving, and Christmas. I was missing my baby’s “firsts” and so many other things my family was able to do. My husband didn’t catch most of the four or five colds that were brought home, and my 3-year-old and baby both recovered much faster than I did with less severe symptoms.
- I felt like my body was not working. I couldn’t fight off illnesses, my digestive system slowed down so much I was close to a blockage, I didn’t get a period for an alarmingly long time, and then my liver enzymes tripled from August to December – despite the fact that I stopped taking Imuran!
- All of these issues were discouraging. It was one thing after another and I couldn’t understand why new problems kept popping up. So far, we are fairly certain that lupus is not attacking my liver but we don’t know exactly what has caused the enzyme spike. I am still seeking answers and had to postpone some testing due to all the colds.
- In December, I learned that I have gum recession and tooth decay. These things happened quickly, over the course of a year, which lines up almost perfectly with when I stopped taking the high dosage of Imuran and began experiencing dry mouth. Although, autoimmune disease have the possibility of causing these things on their own without dry mouth being present. But, lack of saliva can cause all sorts of dental issues and I am terrified at the idea of losing my teeth. Since this is pretty recent news, I don’t know what will happen next. I am using all sorts of dry mouth products and strategies – and I’m a little irritated that they are all currently OTC and a bit expensive.
- Throughout 2021, I continued my Botox treatment and I’m very happy to say that my chronic neck pain has reached lower levels than ever before! It is still debilitating very often, but I can tell things are improving. I’m able to do more and I’m less afraid of getting up and moving around. Technically, my medical reason for receiving Botox is a combination of cervical dystonia and slight hypermobility. But my neck pain issues started after lupus rendered me largely bedbound. My neck issues have always been intertwined with my lupus, so if one improves then the other one will likely see an uptick as well. I felt like I had Cimzia and Botox on my side in this fight and, while we’re far from winning, they are amazing allies and we’re taking ground on the enemy.
- I’m also very grateful to have had access to opioid pain medication in 2021, even during my pregnancy (though I was exceedingly careful with it and my baby did not experience withdrawals). I cannot explain what a relief it is to know that if my joint pain starts to skyrocket I have medication in my home that can thwart it. I no longer have to sob into my pillow, burrow into my heating pad, or curl up in my bathtub and still be in more pain than I can tolerate. I have been given adequate pain relief for my lupus related pains and it has a huge impact on my mental health and my ability to recover from a flare more quickly.
- 2021 was a tough year and I was a bit glad to see the end of it. It was so tough I felt I might crack from the pressure and I worry about how the issues that presented themselves in 2021 will carry over into the next year.
What have I learned since my diagnosis day?
At the beginning of this post, I expressed my frustration that it’s been five years since my lupus diagnosis and I haven’t returned to “normal”. I’m not much better, or, I’m not better to the extent that I want to be. But after my introduction I wrote about 6,000s word (whoa) and I realized that I have accomplished a lot along the way. And I thought, maybe I should be focusing more on where I am then where I thought I would be.
Should I even be expecting to return to what my life was like before I got sick? Was that a good normal? Perhaps this illness has taught me things that I never would have learned otherwise. After all, beautiful flowers have to start in dark, grimy, dirt.
I am not someone who calls my lupus a blessing. I would much rather live without it. However, I do think it is helpful to realize that it has given me gifts. It may even have made me stronger. So, after listing out (an extremely comprehensive list of) highlights from the past five years, I’m going to summarize the positive things that happened in each year to try and shine a light on the good that happened:
2017: I received my diagnosis – some people suffer for decades before getting that far. I started taking Plaquenil and Imuran and saw improvements with both of them. I learned to advocate for myself for the first time by persistently asking for treatment for my hypertension and chronic pain. I joined an amazing lupus support group and I was able to get pregnant with my first baby.
2018: I carried my baby to term successfully and took care of him despite all the flares that came my way that year. I worked hard to see a new rheumatologist who was able to help me through pregnancy, postpartum, and adding new medications to my treatment options.
2019: I asked for help from my support system and they came through for me. I made lifestyle changes that helped to keep my lupus somewhat stable. I tried a biologic medication for the first time, which is no small feat as they are expensive and difficult to access. I learned how to pivot when my rheumatologist quit and seek out yet another good doctor.
2020: I was able to receive a high quality of medical care despite the pandemic. That wasn’t the case for far too many people. I tried biologic medication for a second time and I survived the all too scary side effects that came with it. I was able to get pregnant with my second child (he may have been a surprise, but I recognize that pregnancy is out of reach for many people with lupus) and I received highly specialized care during my pregnancy. I felt privileged to travel to Duke University and have specialized testing that revealed how Imuran was causing harm to my liver. This meant that we had a chance to reverse the damage before it became permanent.
2021: I carried my second child to term (by one day!) and took care of him despite the incredible obstacles that our family faced throughout the year. Instead of letting one doctor leave me without care, I turned to others who would listen. I advocated for a non-traditional biologic treatment (Cimzia) for lupus patients and I received it. Furthermore, it rapidly helped me feel better and had almost no bad side effects. I learned that I have Sjögren’s syndrome thanks to a doctor who went the extra mile for me. We caught it early and that knowledge will help us make appropriate decisions going forward. I also received access to powerful pain medications, which is an almost unbelievable privilege for chronic pain patients over the past few years.
Bonus: I have not – to my knowledge – caught COVID-19. I’m also triple vaxxed and soon to be boosted.
Throughout the hardships, I have continued to have health insurance coverage, an income to pay for my medical care, and a supportive family (especially, a supportive husband). These are positive things that have happened in the past five years since my diagnosis and I hope the next five years continues to have positive moments and that I can use them to spur me on.
I have no guarantees about my health and my future. Yet, I live in a time where I can have hope. Only in the last century were treatments for lupus developed (steroids and Plaquenil were first, but most didn’t arrive until much more recently). Here I am, thinking I can’t believe I’ve been suffering for five years since my diagnosis, but it wasn’t that long ago that people weren’t expected to live more than five years after a lupus diagnosis. We are promised nothing.
When I started writing this I was so pessimistic about not feeling better. It took fierce determination, pain meds, rest, and the support of my family to get this far – and even to write this article. Yet this chance to reflect is a gift and it’s helped me to not be so afraid about the next five years. I’m not perfect, I still cringe at the thought of one day writing a 10 year lupus diagnosis recap, but I hope that I’m still here to do it.
Almost every day over the past five years has been so full of pain, fatigue, and physical struggles that they seemed to overflow and obscure the person I want to be. So sometimes I forget to be grateful that I’m still here and acknowledge that my body is still capable of a lot despite my immune system having gone rogue so long ago.
Writing these hardships out hurt, but writing out the accomplishments made me wonder how will I leave this year stronger? I’m leaving this post with gratefulness and an intention to be optimistic whenever I can.
If you have lupus or another chronic illness, how long have you had it and what has your journey looked like throughout the years?
My 5 Year #Lupus Diagnosis Anniversary. Share on X
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