Your blood tests are normal. Your x-rays look great. I have nothing here to base a diagnosis on. We ran all kinds of tests and there’s nothing abnormal to see.
How ironic that a year ago I wrote about being diagnosed with lupus, and now here I am contemplating what the heck happened to my body over the past three years. For the most part I accept I will never have definitive answers. Unanswered questions suck though, so of course I’ve been trying to assemble the puzzle pieces myself. My latest round of bloodwork was normal along with a whole slew of x-rays on my feet, ankles, hips, and hands after I complained about unreasonably stiff and sore joints. All of the tests for RA and any other rheumatological or autoimmune issues going on, surprisingly came back fine. My rheumatologist remarked that there’s nothing to diagnose me with, which of course is awesome.
What a roller coaster ride though! From utter confusion in the beginning, to various hypotheses from a variety of doctors, to a probable diagnosis, to what I thought was finally a definite diagnosis of lupus. After 2 years the mystery had been solved! But now a year later, everything appears to be normal. After further reviewing this with my doctor, he believes I never had lupus and he didn’t offer much of an explanation.
Fortunately I am quite confident I have one. Over the past three years I’ve analyzed all of my bloodwork, read endless books on different autoimmune diseases as well as perimenopause, and research papers on Covid and long-Covid. I’ve come to the conclusion that my body is either very remarkable or very confused.
The best way I can explain it to myself in order to provide peace and closure is that between the Covid virus and vaccine I think my body was overwhelmed which triggered a state of chaos. Obviously viruses and vaccines, regardless of the type, can cause side effects. The fatigue, the pain, the pericarditis and pleural effusions can easily be explained by long Covid which is something that the doctors always had on the table. But after every appointment I was left with basically the same conclusion— could be long Covid, could be lupus (then it was), could be autoimmune symptoms triggered by Covid. There were several possibilities, nothing definite.
Upon further inspection of my latest labs, I noticed a few tests still slightly out of normal range (slightly high or low). My doctor apparently wasn’t alarmed (as he said all tests were fine), but I’m not content with my health markers being slightly out of a range based on the average American (who we know is not the picture of health). Now I’m more convinced than ever that my body was reacting to the virus and vaccine (yes both) because of these last tests and what they measure. Collectively they point to a body’s reaction to either an infection or vaccine (as stated in the description of each test and what they show) or to autoimmune disease. Since all my autoimmune markers were negative, that leaves the only other explanation — a response to a virus and/or vaccine. If only all my doctors had more than 10 minutes to sit with me to actually do a deep dive and connect all the dots. And not be content with some blood tests being out of range. Seems pretty obvious to me.
However I’m grateful that my doctors insisted on being thorough, testing me for all kinds of autoimmune and neurological disorders as well as underlying cardiac issues. Many of my symptoms are shared by various diseases, but no tests came back conclusive for any of them. Maybe my body just needed time to sort through the chaos.
I’m grateful because I know many people who have been dealing with autoimmune disease or similar symptoms since having Covid and they are still struggling. It’s definitely a long and frustrating road.
I do, however, believe that my decision in the fall of this year to buckle down on nutrition and consistent exercise was the boost needed to reclaim my health. Things are not perfect though. Once the holidays rolled around and I was feeling better, I was less strict about what I ate. I wanted to see how my body would react once my tests were normal. For the most part I’m getting stronger and faster, but the joint pain still shows up. However, I’ve kept diligent notes and upon close inspection I’m quite confident in saying that my joint pain tends to ebb and flow with my monthly cycle and what could be attributed to estrogen fluctuations. This totally makes sense as I am in perimenopause and based on everything I’m studying, women my age often complain of sudden joint pain and soreness that they haven’t experienced before. Every day women post about it in menopause groups, and the research confirms it. Another puzzle piece falling into place.
I wish there was a doctor who could look at the endless notes in my chart and blood work history and say “This is definitely what happened and here’s exactly what you should do from now on.“ Maybe that doctor is somewhere else at a better hospital or practice, but I honestly have no desire or energy to try to find them. The thought of another doctor appointment literally hurts my brain. There are functional and holistic doctors who I’m sure could confirm my hypothesis, but my insurance doesn’t cover them. Unfortunately, our medical and insurance systems suck, so we have to educate ourselves and be our own best advocate.
Despite all of the ups and downs and unanswered questions, I’m trying to remind myself of all I have to be grateful for. My faith has grown, I’ve experienced God in ways I never imagined, I appreciate things I took for granted, I rediscovered my love for running and lifting, I learned so much about my body and how lifestyle and nutrition affect it, my reasons for going vegan over 17 years ago were reaffirmed, and I discovered a passion for helping and encouraging people who are struggling with the same issues I’ve dealt with. Perhaps not having answers was actually a gift because it forced me to take charge and investigate for myself, ultimately leading me to consider the purpose for this next chapter of my life.
I hope my story has resonated with someone out there who is dealing with unanswered questions on a frustrating road to healing. I hope it encourages others to educate themselves about their body and to take steps that are within their control (like nutrition and exercise) to improve their health and empower them. I hope it inspires someone to lean on God and to trust that he sees the big picture and will help them through whatever it is they are facing. I hope it motivates you to be grateful for the little things in life and to face each new day with hope and a willingness to keep moving forward one step at a time. Sometimes it’s so difficult to see all of these things when we’re in the eye of the storm, so perhaps take a moment and reflect on what you’ve been through to see what little lessons are in there to help encourage you as you keep moving forward. Promise yourself you’ll never give up.
I never thought I’d get to this point, or overcome the frustration from all the ups and downs. But here I am and that’s why I believe your breakthrough is just around the corner.