After a run in August vs. hospital fun.

Don’t judge me for admitting this, but this week I was expecting my doctor to call me to confirm a lupus diagnosis and when he didn’t, I was actually disappointed. I really wanted a specific name for what’s been ailing my body for the past year (even if it meant a terrible diagnosis) because I wanted a label I could focus on fighting.  After my latest round of bloodwork and a visit to my rheumatologist, I would’ve bet a huge sum of money that he would finally confirm a lupus diagnosis. After everything I’ve experienced this past year, that diagnosis has always been on the table, but he has refrained from making it because he said my labs didn’t quite convince him. However, I had experienced new symptoms that I thought for sure would be the missing puzzle piece he was waiting for,  but to our surprise, my bloodwork all came back normal! Am I relieved to have normal lab results? Of course! Am I frustrated that I still do not know what caused the craziness of the past year? Absolutely!

Let’s take a moment to recap the craziness of the last 12 months:

September 30 marked exactly one year since I was admitted to the hospital with acute pericarditis (or as I like to say – excruciating chest pain). Altogether it took four trips to 3 different ERs, as well as appointments with two different specialists before I was finally taken seriously and someone looked closely at my heart. (Go figure…I guess excruciating chest pain wasn’t specific enough!) Up until then I had been told it was “just” acid reflux and constipation and since my EKG kept coming back normal, I was told several times even though I insisted I was not constipated, to go home and chug a bottle of laxatives.(Guess what? It didn’t work!) When I was finally admitted to the hospital on the 30th I was diagnosed with pericardial and pleural effusions (see end of post for definitions). My inflammation markers were off the charts, I was anemic, my blood pressure was dangerously low, my heart rate skyrocketed and I was in excruciating pain. Eventually a surgeon removed 400 mL of bloody fluid from around my heart. When they held up the bag of fluid after the procedure, I was shocked to see how much there was. No wonder I was in so much pain and couldn’t breathe! 

Since then my cardiologist and rheumatologist have been trying to figure out what caused it and why it kept coming back when we decreased the steroids. There’s been talk of lupus, long-haul Covid, viral pericarditis caused by Covid, lupus-like symptoms triggered by Covid, but no cause has been determined and not knowing for sure is driving me crazy.

Obviously this past year has been a roller coaster filled with unexpected twists and turns (just ask my kids how much I hate roller coasters!), but thankfully for the most part I have felt much better since then and have been able to get back to running and doing everything I normally do. However, my body still needs steroids and two other medications to keep the pericarditis at bay. And if I’m completely honest, my body often does not feel great and that’s the part that’s driving me nuts!

Even though I’m still on meds and don’t have the answers I want (and there’s a high likelihood I never will) I realized this whole ordeal has taught me a lot and that makes up for the uncertainty. 

I quickly learned that regardless of how much pain I am in, it is so important to be grateful and kind to other people. (I could have easily convinced myself I had a right to be bitchy because I was in pain) Seems pretty obvious, but it’s definitely something I needed to be reminded of. All the nurses and doctors during my hospital admissions continuously inspired me as they worked endless hours and tolerated a lot of crap from people. I truly valued and appreciated all their concern and kindness toward me, so when I behaved the same in return, it got me out of my head and helped me feel better. Now I’m trying really hard to consciously practice this with people I encounter each day. That’s the beauty of focusing on others even when we are in pain. The side effect is that we end up feeling better as well, and that’s one side effect that I happily welcome.

It’s been crucial to advocate for and educate myself continuously because the medical system is so screwed up! I never used to speak up or question doctors, but if  I want answers I now know I have to be persistent and do my own research. It’s definitely a pain in the ass but I’ve learned so many fascinating details about my health and body that I am so grateful for.

It wasn’t until last week that I actually realized I had access to all of my lab results and doctor’s notes online, so it was eye-opening to see everything the medical staff had written about me from a clinical perspective. Reading their notes showed me how far I’ve come and helped me appreciate where I am now. 

I wish I could eat whatever I want whenever I want, but I’ve learned that nutrition absolutely matters. Regardless of which symptoms I’m experiencing (they tend to vary over time), what I put into my body has a profound effect on how I feel. When I’m eating clean and stuffing myself with lots of raw veggies, smoothies and fruit, I undoubtedly feel better.

Exercise is key to my wellness. I’ve always known that, but this has been a huge wake up call and motivator! When I move my body consistently, I feel as though I can take on the world. Completing a difficult run leaves me with a sense of accomplishment and shifts my mindset, reminding me that I am capable and strong. It fuels my desire to keep fighting. I no longer view running as something I HAVE to do, it’s something I WANT to do and I appreciate it so much more.

To be completely honest, after I hung up the phone with my doctor yesterday, I was frustrated that he couldn’t give me a definitive diagnosis and couldn’t explain my symptoms. He’s just as frustrated. Don’t get me wrong, I am grateful that I didn’t receive terrible news. I don’t want to be diagnosed with ANYTHING ! But I’m frustrated with trying to piece this puzzle together. When it hit me that I still had no definitive answers, thoughts such as “What’s the point of even trying to eat healthy anymore? Why even bother to exercise if there’s still this lingering problem?” screamed loudly in my head. Thankfully my husband showed me a different perspective. He pointed out how this could have turned out much differently if I didn’t take care of myself. I could very easily be back in the hospital unable to get out of bed, the fluid around my heart could continue to build up, and my inflammation markers could have come back extremely high once again which could lead to even MORE prescriptions and ER visits.

 Being proactive has empowered me. I’m determined to feel better even if I never know the true cause of this. So even though the past year has been a rollercoaster and I still don’t feel as great as I want to, I am sincerely grateful to be where I am at the moment. Despite everything, I am able to run 4 to 5 miles, even if it’s MUCH slower than I want. I’ve learned to live each day one moment at a time and appreciate all of the little things that I used to take for granted. I’m trying to follow the examples set by the doctors and nurses I’ve met to be more caring and kind, especially when I’m tired or stressed. All of the blessings God has given me are at the forefront of my mind and with each day I’m getting better at acknowledging Him and being grateful. 

I’m hopeful this will all resolve itself within a few months, but in the meantime I’m going to continue to learn and be thankful that I am much better off than I was a year ago.       

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Below are definitions for my different diagnoses. Notice the last (and latest) one is basically a diagnosis of exclusion for when they can’t really figure it out! 

  • Pericardial effusion (fluid around the heart) is an abnormal accumulation of fluid in the pericardial cavity, which is between the heart and the pericardium (the membrane sac that envelops the heart).
  • A pleural effusion is an unusual amount of fluid around the lung. Many medical conditions can lead to it, so even though your pleural effusion may have to be drained, your doctor likely will target the treatment at whatever caused it.
  • Chronic pericarditis is inflammation of the pericardium (the flexible two-layered sac that envelops the heart) that begins gradually, is long-lasting, and results in fluid accumulation in the pericardial space or thickening of the pericardium. Symptoms may include shortness of breath, coughing, and fatigue.
  • Idiopathic recurrent pericarditis is a rare autoinflammatory syndrome defined as recurrence of pericardial inflammation of unknown origin following the first episode of acute pericarditis and a symptom-free interval of 4-6 weeks or longer.
  • Undifferentiated connective tissue disease (UCTD) is a systemic autoimmune disease. This means the body’s natural immune system does not behave normally. Instead of serving to fight infections such as bacteria and viruses, the body’s own immune system attacks itself.