My Story (Part III)

If you haven’t already, check out My Story (Part I) and My Story (Part II)!

I remember my first visit to Hopkins so clearly; it was April 3rd, 2015 and I was both nervous and excited. I had sent ahead all the blood work and previous doctors appointment notes I could get my hands on and I just knew I was going to finally get some answers here! The doctor came in, she asked me a bunch of questions, did a brief physical exam and then said, very calmly, 3 words that would shape every day of my life from that day until now, “It’s definitely lupus”. “I have no doubt”, I remember her saying. It was simultaneously the best and most devastating day in my journey thus far. She told me my joints were extremely inflamed, all the trips to the ER for chest pain were for, what she called, “serositis” (basically inflammation in the connective tissue around my heart and lungs). She told me the problem with inflammation around those organs, other than the discomfort, is the damage it can do every time inflammation occurs. It can lead to scar tissue buildup (which later scans showed I have around my lungs), fluid build up in/around those organs (which I have had around the lining of my heart), hardening of arteries, etc. So the goal is to get the inflammation under control as quickly as possible. Sounded great to me! I was so hopeful…Finally, someone really listened to me, we have a diagnosis and we have a plan to get rid of this crap! She gave me a steroid shot (which was amazing while it lasted) and prescriptions for methotrexate and vitamin D to go along with the Plaquenil I had already been taking. She was amazing, I saw her (on average) every other month for the first year and we tried a variety of drug combinations until we found the right cocktail to get the inflammation under control (you name it, I’ve probably tried it). While this was going on, there were many other specialists, many scans/tests, and procedures. I was diagnosed with pericarditis, atrial tachycardia, neuropathy, migraines caused by lupus, decreased lung function due to the scar tissue around my lungs and eventually fibromyalgia. The best part about this rheumatologist, for me, was that I always left her office feeling heard! She listened to every concern, every symptom and answered every question as best she could.

Meanwhile, I tried so hard to not let lupus get in my way while all of this was going on, acting as if everything was fine. I didn’t tell anybody from work that I was sick, I put on a face of makeup (my war paint), had a few big cups of coffee and forced myself to go in, even when I felt like I was slowly dying on the inside. I had worked my ass off to get where I was (especially with work), I couldn’t slow down now. I tried to schedule all my doctors’ appointment and procedures around work so nobody asked questions or thought I was some sort of slacker. I didn’t really confide in friends or family about what was going on. I thought for sure we would find some magic solution that would make everything better, so I was bound and determined to pretend everything was fine until we did. But the reality of life with lupus and the need to make drastic changes did catch up with me eventually. After having a lovely kidney infection that got me admitted to the hospital, I was visiting my doctor for a follow-up. I was sitting in her office complaining about how hard I was struggling and that I was having such a hard time functioning like I used to, and she told me, point blank, “you are never going to feel the way you did before getting sick. There will be tolerable days and there will be terrible days, our goal right now is to get you to a point where your body is not doing extensive damage to itself and you are having more tolerable days than terrible days and then to maintain from there”. Couldn’t get much clearer than that.

Since that little come to Jesus moment, it has been nothing shy of a freaking whirlwind when it comes to making adjustments to my life. Chronic illness has stripped so much of what was my life away from me. And the funny thing is, that life that I had – the goals and priorities – feels so foreign to me now. It’s so hard to explain, but even the pieces that remain – I don’t feel the same passion for. I have shed so much of that person and the many things that used to consume my attention. But where does that leave me? The truth is, I really don’t know…and I’m good with that for now.

The idea for this blog is to (of course) share my journey with lupus in the hopes that someone can learn from my mistakes or glean some bit of knowledge from my ramblings. I know how lonely it can feel to be, living with chronic illness, not knowing what the F is going on in your body, and feeling like nobody you know can relate to what is going on in your world. I want to create a space where chronic illness warriors can come to ask for advice, offer support to one another and form bonds. So thank you for stopping by my little corner of the inter-webs, I am immensely happy that you are here. Please leave a comment or send me a message through the contact section and let me know what kind of content you’d like to see!