As we live with symptoms with no known cause, we find ourselves growing more and more tired. We're also getting increasingly more scared as the answers continue evading even the most sophisticated tests and doctors. We're not yet diagnosed with Rheumatoid Arthritis.
Test results are negative.
“It's not Lyme, not Lupus,” they said.
We feel relief.
We tell ourselves it's all good because we're eliminating things, and the answer will come soon.
More negative test results come through, and relief starts to feel heavier. We've been on this journey for months and we refuse to give up.
Another doctor, another test, and another negative result.
We're feeling physically worse, and no one can tell us why. And the lack of answers, the not knowing is taking its toll on our emotional state.
And then finally, after a few months, we see the hard-to-get-into specialist. The Rheumatologist. Surely this doctor will be able to figure out what's wrong with us. Examination. More tests ordered. Follow-up in a month they say.
So we wait. Our patience is wearing thin.
Our follow-up appointment gets canceled. We reschedule.
Finally, we're back in the specialist's office. Another exam.
“Your test results are negative,” they say, “but there is obviously something going on here.”
Your road to a diagnosis with Rheumatoid Arthritis may look like this one. Or maybe, your tests came back positive right away. Either way, once you learn you have RA, there are some crucial actions you'll need to take. I've created a list of the top five crucial actions to take when diagnosed with Rheumatoid Arthritis, and some of them may surprise you. You can find the list at the end of this post.
Back in the doctor's office, I hear the words, “We're going to treat you for Rheumatoid Arthritis.”
My mind recalls an image of my grandmother's twisted hands, and I remember the constant pain she endured. I'm no longer listening, and the tears pool in the corners of my eyes.
The specialist shoves two packets of paper at me, jarring me back to reality and I hear him saying, “These handouts explain the medications we're going to use for your treatment. Any questions?”
Um, yeah. Questions. My brain feels like mush, and I have a hard time forming the words. I have a million questions, and I don't know where to begin.
Isn't there an option that doesn't involve pharmaceuticals, I want to know.
The specialist tells me that if I want to try alternative methods to relieve the symptoms, he cannot help me. He will only continue to see me if I take the drugs.
What about the side-effects, I ask. “The handouts explain them,” the specialist says.
I want to talk this over with Big D before I decide on the medication, I tell the doctor. I feel so confused and frightened.
Will my hands get all twisted, I want to know.
The tears are now streaming down my cheeks. I'm terrified.
Will the pain go away? Am I going to die?
As I continue to ask my questions, the specialist stands up, and he is walking me toward the exam room door. I'm asking questions and crying, and he's walking me out!
“Let me know if you want to start the medication,” he says before walking away.
I'm in shock and standing in the hallway of the doctor's office with eyes so full of tears I can barely see. I feel people staring at me, but no one speaks.
I rush out of the office and into the safety of my vehicle where I completely break down. I'm holding two handouts about the medication he wants me to take for a disease he didn't explain and I know nothing about. Nothing except the memories of a Grandma who lived in constant pain with crippled hands.
I call Big D and find comfort. We both agree I need to find a different rheumatologist. Someone who will listen to me and explain things to me. After calming down enough to drive, I make my way home, feeling numb.
I've been diagnosed with Rheumatoid Arthritis.
The stress of the encounter has made my pain skyrocket. I heat up my neck wrap in the microwave and settle into a chair. I begin making a list of the actions I need to take now that I've been diagnosed with Rheumatoid Arthritis. This list, the top five crucial actions to take when diagnosed with Rheumatoid Arthritis, is available in my free resource library. You can get free your library card and passcode below.
Taking action feels good and gives me a sense of control over a disease that has left me feeling out of control.
A few days later, I go online and review the notes from my appointment with the specialist. I'm shocked at what I read.
There are two diagnoses listed, but neither of them is Rheumatoid Arthritis. I double check the dates, and they correspond to the time I was in his office. I review the medication handouts he gave me. They are used to treat people who are diagnosed with Rheumatoid Arthritis.
None of this makes any sense.
I email the nurse and ask. Two days later I receive a response. No, I was not diagnosed with Rheumatoid Arthritis. And yes, I am being treated for Rheumatoid Arthritis.
It would be another two and a half months for me, before being officially diagnosed with Rheumatoid Arthritis. And the only thing that kept me sane during that time is working through my list of the top five crucial actions to take when diagnosed with Rheumatoid Arthritis.
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Being diagnosed with Rheumatoid Arthritis can be scary. You may feel alone and like you're the only one. You're not. I'm right there with you and I'm here to support you on this unexpected journey.
What did your journey to diagnosis look like?