Five days after receiving the telephone call enrolling me in the cancer study, I had an appointment with Hematology/Oncology. The day was long, and many blood tests were run. At approximately 4:00 p.m., as my husband and I sat in a cold, stale hospital room waiting for whatever news would come next, the nurse practitioner literally busted through the door.
“Your light chains are not cloning. You DO NOT have multiple myeloma. The doctor will be in soon, but I know how scary this has been, and I had to come tell you.”
Insert gasp. Huge exhale.
When the doctor entered the room, she was very thorough. She drew pictures explaining light chains and what the results meant. She also told me she had read all the messages in my patient portal, was aware of the enrollment in the study, and sincerely apologized. (This, in and of itself, could branch off into a whole different story, but we’ll save that for another day.)
At the conclusion of the appointment, I was scheduled for a six-month follow-up and sent straight back to Rheumatology.
Now it is spring 2024.
This is the moment I was told it was most likely that I had systemic lupus and was prescribed hydroxychloroquine, alongside several other medications. At that point, I was taking medication to control my Raynaud’s, giving myself vitamin injections, taking a prescription anti-inflammatory, muscle relaxers as needed for pain, and the standard slew of over-the-counter vitamins.
This is where the story shifts.
Rather than accept that this was simply going to be my life, I started digging.
That digging is why I chose not to start taking the hydroxychloroquine. At the time, I didn’t tell anyone. Instead, I began making changes to my diet. I focused on eating anti-inflammatory foods and doing everything I possibly could to counteract what was happening inside my body.
I saw that rheumatologist one more time before making the decision to change my healthcare team. I felt as though I wasn’t being heard, and with every visit I felt more dismissed. I was sick and tired of telling my story over and over again because every appointment seemed to begin with a new intern seeing me before the doctor. By that point, I carried a health journal with me everywhere so I could simply hand it over.
I was exhausted, mentally and physically.
I was constantly in pain. If I wasn’t having a horrific pain spell that sent me to the emergency room, I was wearing multiple prescription pain patches in a single day.
Oh, and I forgot to mention… I also saw an orthopedic specialist after being referred there. I underwent two nerve blocks in my spine that, unsurprisingly, provided no relief. That doctor couldn’t put his finger on it either.
The only thing anyone could say was that it looked like I was having a lupus flare and that my body was attacking itself.
And then…
I saw a new rheumatologist.
One in private practice.
And my world began to change.
In Part IV, I’ll wrap things up. I hope this post reflects just how important it is to advocate for yourself when it comes to your healthcare. Sometimes you have to fight. Sometimes you have to make calls every single day, hoping for a cancellation. And sometimes it’s okay to say, “This isn’t for me anymore.”
Until next post, prayers, friends.
~ Stace
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