Well — something new happened today. Something I genuinely never thought I would experience. I’m still wiping tears of joy off my cheeks as I type this.
I had an appointment with my pain specialist this morning, and I brought my dad — a board-certified PharmD — with me. I’ve learned over time that having him there, armed with pharmaceutical knowledge, seems to give my case more weight. As if I don’t already deserve relief without an academic witness. But that’s the reality many of us live in, isn’t it?
In the week leading up to this appointment, I spent hours — days, honestly — researching pain medications I haven’t tried yet. Something with even the possibility of reducing my symptoms enough to feel… functional. That’s something people without chronic pain rarely understand: we’re not seeking zero pain. Zero pain is a fantasy. We wake up in pain, move in pain, eat in pain, dream in pain. Our goal isn’t perfection — it’s survival. It’s livable pain. It’s being able to shower, cook, work, socialize, exist without feeling like we’re drowning in fire.
There seems to be a huge misconception that chronic pain patients are chasing some fantasy of being pain-free. We aren’t. We don’t medicate to get to zero — we medicate to get to functional. To something we can breathe through, move through, live through. If the average, able-bodied person felt our “baseline,” they’d be in the ER, so the idea that we’re asking for a miracle pill couldn’t be further from the truth. We just want livable, functional.
So what changed today?
Why did my doctor finally listen?
Because I walked in prepared — maybe too prepared, if there is such a thing. I had notes, symptoms organized, history summarized. And yes, I even researched two medications I thought could be realistic options based on my condition and treatment history. I didn’t demand them — I asked to discuss them. I asked why they might or might not be appropriate. I treated this like a conversation instead of surrender. And for the first time in a long time… I was heard.
My Appointment Prep Sheet
📝 Before the Appointment
- Write down the top 3 things I need to address — no more than 3, or they may get lost.
- Bring symptoms tracked over the last week(s): severity, triggers, flares, patterns.
- List medications + side effects + anything I’ve stopped taking & why.
- Prepare questions in advance — even the uncomfortable ones.
🩺 During the Appointment
- Start with what matters most: “My main concern today is…”
- Ask for explanations, not assumptions.
- If something isn’t clear: “Can you explain it another way?”
- Advocate for pace: “I want to explore this fully — can we slow down here?”
- If I disagree: “I hear you, but my lived experience is different.”
💊 Advocate for Options
- What are my alternatives?
- What are the risks vs. benefits?
- What symptoms would mean I need follow-up or urgent care?
- Are there lifestyle, treatment, referral, or testing options?
- What does success or improvement look like on their end — and mine?
📚 After the Appointment
- Summarize what was discussed in one paragraph.
- Note follow-up tests, referrals, or medication changes.
- Send a portal message if something didn’t get enough time.
- Celebrate the win — advocacy is work.
See below for a downloadable PDF version of the questions and research I brought with me:
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