I had an appointment with the gastroenterology nurse practitioner. It was a fairly straightforward visit, but it feels like another step forward in figuring things out. We talked through what has been going on, and the next steps are now in motion.
I also discussed my current eating habits and my plans to begin incorporating chair yoga and Pilates into my daily routine. I’ve lost a lot of core strength, so I’ll be starting very gently and building up as I’m able. I tire easily, so pacing will be important.
I am scheduled for an abdominal MRI in about 8 days, along with lab work. So now it’s a bit of a waiting period.
I am currently dealing with stage three liver fibrosis, along with my CRPS and Alpha-gal. Thankfully, my gastroenterology team takes all of these things into consideration.
Today feels quieter after the appointment. Not necessarily better or worse—just in between. There’s some relief in knowing things are being looked at, and also that familiar uncertainty that comes with waiting for answers.
I had a rough night with pain in my feet due to CRPS. I have it in both feet, and it is starting to creep up into my left ankle now. It always gets worse at night. I’ve been trying to manage the pain without medications for now. I’m moving into my fourth year with this condition, and I am currently focusing on an anti-inflammatory approach, elevation, and ice when needed. Heat tends to aggravate my CRPS, while ice gives temporary numbness and relief.
I am also dealing with neuropathy pain in my feet, which makes walking and standing difficult. I use a cane for shorter distances and a wheelchair for longer outings. I still make a point to walk when I can. I don’t want my legs to atrophy, and my primary doctor has encouraged me to walk short distances daily. On good days, I walk around the house and to the mailbox.
My CRPS journey began in July/August of 2021.
At the time, I was working a physically active job as both a direct support professional and assistant manager of an apartment complex for individuals with disabilities. I began experiencing worsening pain in both feet and eventually sought medical care. I was referred to a podiatrist and initially diagnosed with Morton’s neuroma. We tried several treatments, including cortisone injections, but nothing improved the pain.
After the second injection, my foot became severely swollen, bright red, and hot to the touch. It was one of the most painful experiences I’ve ever had. I even had my first panic attack when a third injection was suggested.
I was then diagnosed with RSD, now known as CRPS.
I sought a second opinion, and both my primary doctor and another podiatrist confirmed the diagnosis. Thankfully, I had supportive providers and did not experience the kind of medical dismissal many people report.
I have since been approved for disability due to a combination of factors, including CRPS, asthma, and degenerative disc disease. It was a long process, but worth it. I had a good lawyer who helped me through it.
These days, my life is quieter. I spend my time reading, writing, occasional crafting, and managing pain. Reading helps me cope—I read 288 books last year, and I’m already over 100 this year.
Physical: Tired, worn down. Pain levels around 6–7 in my feet
Energy: Low to moderate
Mood: Steady, thoughtful
I’m not following a strict “diet.” I’m working toward a lifestyle that supports what my body can handle right now. Because of Alpha-gal and my other health issues, I’m paying close attention to what I eat and how it makes me feel. I’ve been focusing on smaller meals throughout the day and keeping things simple and gentle.
Spacing food out works better for me than eating larger meals. For example, something as simple as a hard-boiled egg and a piece of toast works better for me than something heavier. I’ve also been incorporating fruit tisanes. They’re light, soothing, and easy to tolerate. It’s a small thing, but it helps.
Breakfast:
Hard-boiled egg (lightly salted and peppered), whole grain toast with plant butter, fruit tisane
Lunch: 1 cup chicken noodle soup, water
Dinner: 4 oz chicken breast, small salad (romaine, cabbage, carrots, vinegar/oil dressing), water
Snacks:
Morning — applesauce
Afternoon — tortilla with peanut butter
Drinks: Water, fruit tisane
Right now, this feels less like following rules and more like learning a new rhythm. It’s not about restriction—it’s about paying attention. What feels okay, what doesn’t, and adjusting from there. I’m listening to my doctors and my counselor, applying what I’m learning, and giving feedback on what works and what doesn’t.
I’m very fortunate to have a strong support system—medical, mental health, friends, and family—all working together. I’ve had to learn to focus on what I can do, rather than what I can’t. I can still read. I can still write. I can still connect with people. I can still be present. That matters.
I’ll continue sharing what’s working for me, and what isn’t, as I go. If you’re walking a similar path, you’re not alone. Until next time—peace, and be safe.
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