‘It was positive’
“We got your test results back,” my doctor said to me over the phone recently. “It was positive.”
Unlike most people would think, my response to this news was excitement and relief.
I screamed, “Thank God! We finally have something.”
My doctor laughed and said, “You know I try to stay professional, but I had the same reaction.”
Growing up chronically ill means a lot of your symptoms go unanswered. This specific problem has been haunting me for almost an entire year.
Swollen lymph nodes, neuropathy, Reynaud’s phenomenon, abdominal pain, GI tract problems, unexplained rashes, headaches with blindness and so much more bothered me on a daily basis.
No one knew what was wrong. My mom and I, on the other hand, have been down this road before. We were positive it was another autoimmune disorder.
The most frustrating part is that my doctors agreed, but we couldn’t jump straight to testing because insurance makes you rule out the “common causes” for these symptoms. For 10 months I’ve been living the same day over and over with no relief— no answer.
This problem was the reason I couldn’t move across the country. It completely altered the trajectory of my life.
Now, you may be thinking, “Okay Abbey, I get it. But what exactly did you test positive for?”
I had six tubes of blood drawn a month or two ago to test my body for lupus and other autoimmune diseases.
First, I tested negative for rheumatoid arthritis. My doctors and I were about 99% sure I didn’t have this to begin with.
The first hurdle in autoimmune testing is a positive ANA test. The main thing this looks for is if there are elevated antibodies and inflammation found within the body.
Many people fighting infections or dealing with non-autoimmune disorder problems can test positive. The difference is there’s an outside source causing the inflammation within the body.
For the basic ANA test, all you get is a positive or negative. For the more lupus-specific test, it actually breaks down how positive someone is with numbers.
To test positive for elevated inflammation and ANA antibodies, a person needs to have a baseline reading of 1:80.
My result was 1:320. Definitely showed my overachieving side with that one. But for real, I was so grateful to finally get a significantly positive result for once.
Every test up to this point has been normal, so in the back of my mind, I was terrified my ANA would be the same. I always have to prepare for this possibility.
When things come back as “normal,” many people see this as a good thing. For a chronically disabled person, it’s the worst. All that means is we’re back at square one.
Square one means researching, documenting symptoms and finding new tests to try. I’m honestly my own doctor at this point; it’s exhausting. My body is basically my own research study that never ends. It also never follows the script, meaning I can never guess its next move.
This is only one piece to my complex medical puzzle. Will it be the last? I honestly doubt it.
All I can do is prepare for the next chronic mystery to come my way. It’s getting easier to stomach every condition, but I do know everything about me isn’t normal.
One of the hardest things about everything is that my doctors are almost just as clueless as I am when it comes to my symptoms. Every visit to my primary care is at least an hour long, filled with us sharing theories of what’s happening.
Then, we’ll game plan what tests we need to do next. Whether it’s a blood panel, CT scan or bringing in another specialist, nothing is simple.
But hey, if everything in my life was straightforward, I wouldn’t be who I am today.
And I have to say, I love who I’m becoming. Onwards and upwards, friends.
Sincerely, Abbey