There are days when chronic illness and autoimmune life feel like an endless series of appointments, pills, scans, and dismissive doctors who barely skim your file before deciding who you are. Days when your body screams for answers while the system quietly shrugs, leaving you to navigate a maze of uncertainty and frustration. The waiting rooms become a second home, filled with whispers of shared struggles and the tension of unspoken fears. Each appointment brings hope for understanding, yet often leads to the same cycle of inadequate responses and prescription pads that offer little relief. It’s a relentless journey marked by fatigue that seeps into your bones, where the promise of relief feels like a distant mirage, and every trip to the clinic reinforces the isolation that accompanies an unseen battle.
If you want the latest recap before this one read it here:
And then this before the clots happened:
But then there are days like today — days that remind you why you keep fighting, when the world feels heavy but hope shines a little brighter. Days where, even through the exhaustion, you feel seen, heard, and believed, as if the universe conspires to lift your spirits and show you that you’re not alone in this journey. And that’s the magic I found today.
Let me catch you up.
The Appointment That Felt Like a Hug
Today’s doctor’s appointment was uneventful — and I mean that in the best way. My go-to Rheumy provider (who I had to temporarily part ways with due to the overwhelming distance), welcomed me back like no time had passed. She apologized for how horrible that new provider had been and looked me dead in the eye with a fierce little smile and said, “I got you, girl.”
And gods, I needed to hear that.
No medication changes. No upheaval. Just a solid, grounded confirmation that what I’ve been doing is working. It was such a relief to feel validated after the previous chaos, especially when I think of how infuriating it was to have my treatment dismissed by someone who didn’t understand my history or the nuances of my condition. She assured me that my treatment plan was exactly what my body needed and voiced her frustration over how the other provider had handled things. He didn’t just misunderstand my case; he seemed to disregard the evidence right in front of him. While he believed my son—who presents with fewer symptoms—over me, it was downright maddening to hear.
When I recounted my recent experiences with the clots in my hand and how they had been treated, she immediately pulled up my file and exclaimed, “How can he say you DON’T have APS?!” Her bafflement mirrored my own, and in that moment, I felt a huge weight lift off my shoulders. It was confirmation that I wasn’t crazy and that my concerns were legitimate.
So, we’re staying on daily aspirin and watching things carefully, just like we have been doing all along. It’s amazing what a difference a good provider can make. Knowing that I have someone in my corner, who understands me and my health challenges, brings a renewed sense of hope. I left the office feeling empowered and ready to tackle whatever comes next, confident that with her guidance, I’m on the right track this time.
Building the Right Team (Even If It’s 2 Hours Away)
She was glad to hear the MedStop doctor had been knowledgeable and helpful, and told me to ditch the other provider completely. From now on, it’s her and the MedStop team managing my care — and I couldn’t agree more. I’ve got a follow-up teledoc appointment in three months to check in.
She also encouraged me to find a primary care doc of my own choosing — someone to help keep closer eyes on the APS. If any more clots show up or weird symptoms pop off, she’ll step in and handle it immediately. And with the right primary, I might even be able to finally get out of RO and get Zepbound at a much more affordable price.
And yes, even though I have to drive almost 2 hours there and 2 hours back, it’s worth every damn mile. I needed to remind myself of that today. This kind of care — real, compassionate, rooted care — is worth the time, gas, and effort. My body deserves this. I deserve this.
So Here’s What We Know Right Now:
Nothing has changed treatment-wise, but my diagnosis list still isn’t short:
- APS (Antiphospholipid Syndrome)
- Fibromyalgia
- Psoriatic Arthritis (PsA)
- Carpal Tunnel in both hands
- Osteoarthritis
- Brittle bones
- Tumor on L2 vertebra — if the spine clinic doesn’t follow through, she will
- Degenerative Disc Disease
- Bulging discs
- Two herniated discs
- Two fully blown discs (above and below my spinal fusion)
- Military Neck [no curve in my neck like there should be]
- Pustular Psoriasis
- One still-undefined autoimmune disorder — most likely Lupus-adjacent (lots of markers, but not all of them line up… yet)
Why This Matters
In a world that often dismisses women’s pain, especially when we’re neurodivergent, spiritual, or “too complex” for easy solutions — having someone in your corner who gets it is sacred. It can be incredibly isolating to feel like your experience is invalidated or misunderstood. The journey through pain, whether emotional or physical, is often shadowed by societal expectations and the pressure to conform to simplistic narratives. This is especially true when dealing with chronic illnesses or mental health challenges that don’t fit into a neat box. [News flash, not every patient presents the same way!]
This isn’t just about meds and diagnoses. It’s about reminding ourselves that we are worthy of being cared for. Acknowledging our worth is an act of rebellion against a system that often neglects the nuances of our experiences. We deserve to have our pain taken seriously and to find support that goes beyond mere prescriptions. It’s about reclaiming our bodies, our voices, and our stories. It’s crucial to realize that our identities and experiences are valid, and we do not owe anyone explanations for our struggles.
So, if you’re out there navigating chronic illness, autoimmune chaos, or just trying to get someone to listen — let this be your reminder: You are not making it up. You deserve a team that fights with you, not against you. This team can consist of friends, family, or healthcare providers who respect your journey and stand alongside you.
Even if that team is two hours away, remember that distance does not diminish their support. Connection can transcend physical boundaries. Reach out, seek those who understand you, even if it’s virtually. Build that network of allies who celebrate your strength and advocate for your needs. Sharing our stories and experiences is part of the healing process, both for ourselves and for others who might feel unheard. Together, we can create a safe space where our complexities are not just tolerated but embraced.
Much love and many blessings,
Mrs. B 🦉💛
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