Adrenal Courage

January 16, 2025, I woke up at 4:50 am, as I normally did, to workout at Big North Barbell. I remember doing a workout of ski erg, burpee box jump overs and shuttle runs. The workout felt great! By the time I got to work, I began having some left sided mid back pain, worse with deep inspiration. I thought maybe I strained something or I was having some tendonitis from doing 3 pull up negatives for the past 16 days. The pain persisted throughout the day. My husband (physical therapist) did many different orthopedic tests on me and everything was negative. We couldn’t figure out what the pain was, but I figured with time it would improve.  

Two days later, the pain began to radiate to my anterior chest, again, worse with deep inspiration. I felt like there was something up under my diaphragm, but I could not palpate anything. I was also feeling fatigued, had decreased appetite and body aches. I called my mom, who reminded me of her symptoms with spontaneous pneumothorax, so I agreed to go get checked the next day if I was still symptomatic. The next morning I went to the walk in. My chest x-ray was negative and vitals were normal. Myself and the provider were both suspicious of pleurisy given my history of an upper respiratory infection two weeks prior. She called in a steroid for me which I began taking right away.  

Over the next few days, my lymph nodes all along my spine, in my neck, and my breasts became quite swollen, palpable and sore. The back pain did seem to improve with the steroid. I also noticed a left supraclavicular lymph node, but at the time, I was suspecting it was reactive due to my presumed pleurisy. I continued to monitor the lymph nodes and all but my supraclavicular node resolved after a few days. I then started to become worried that I had lymphoma or a reactivation of mononucleosis. I went to another urgent care and had labs drawn which all came back normal.  

I then started experiencing mild chest pain with eating and early satiety (getting full quickly). I was able to see my PCP shortly after my urgent care visit. When I described my symptoms, she looked at me like I had 3 heads. She told me I had GERD, despite being on a PPI for a few weeks due to these symptoms. She said it was “a lot” and she wasn’t sure where to go with it. She said she would order a CT abdomen, however, 2 weeks later, it still wasn’t ordered. In retrospect, I wish I would have dropped the PA card and told her what I needed and needed it STAT!  

Finally, through the encouragement of my husband as we cancelled a ski date due to my fatigue and achiness and overall malaise, I scheduled an appointment with another provider. She took my complaints seriously and ordered a CT chest, which was then denied by my insurance. Knowing that something wasn’t right and that I couldn’t wait on this any longer, I finally mustered up the courage to present to the ER. I told the provider my symptoms; he repeated all the labs I had done and ordered influenza and COVID tests. Once everything came back negative, he discharged me. This time, I asked him what left supraclavicular lymphadenopathy means. In school – we learn this is cancer until proven otherwise. He told me that it is not pathognomonic for cancer and that since I do not have any life-threatening conditions that will kill me in the next 24 hours that he could not order anything further for me.  

This is how broken our health system is. Providers are limited by insurance companies. Patients are often not listened to or taken seriously. Everything works at a snail pace and people fall through the cracks.  

Luckily, there is a local-ish cash-pay imaging center within 1.5 hours of me. I was able to schedule my CT chest ordered by my new PCP. This cost me $272. I had this done about 6 weeks after my onset of symptoms on 2/26. By this time, I had about a 10-pound weight loss. I asked the tech who was imaging me if I could see the images. She could see that I was in my scrubs, so she asked me what I did. After the scan, she showed me the images. She pointed out several pieces of anatomy then pointed to a large structure and said, “I don’t know what that is.”  

All this to say, you know your body best. If your gut is telling you something is wrong, don’t gaslight yourself and try to downplay your symptoms. Seek help. If the first provider can’t help you – find another. I know some of that is easier said than done in certain areas. Use your connections if you need to. I’m sure you know 1-2 healthcare workers who may understand the system better. I always sit and wonder that if I wasn’t medical, I would probably have significantly delayed treatment. I feel I would have had to undergo a trial of PPIs, EGD, etc. Prior to having any definitive testing. Most lay persons do not obsessively palpate their lymph nodes.