Health Update - Month 15
Posted by Mira on June 8, 2026 in stories
[placeholder: opening paragraph — brief summary of the month]
Contents
- How I Feel
- Body Weight
- Gym Performance
- Sleep
- Heart Rate (Resting Heart Rate & HRV)
- Skin
- Menstrual Cycle
- Autoimmune Update
- Learnings
- Next Steps
How I Feel
Overall I feel great — physically, emotionally, and mentally.
In Texas, as we headed into higher UV days before the trip, I started to notice photosensitivity again — a stingy, aching feeling around the joints (knees, fingers). I felt the same thing on a sunny day in Barcelona. It's a small deal. I don't avoid the sun at all.
Body Weight
I continue to lose weight cycle by cycle — about 4 lbs over the last two cycles.
I'm still doing what worked in Month 14: cycle-based fasting, no snacks, eating until 80% full, prioritizing protein and fiber first, staying relaxed, no heavy workouts, and sleeping 8 hours.
Body Weight - Previous Cycle (Apr 14 – May 9) · -1.0 lb
Body Weight - Current Cycle (May 9 – Jun 1) · -3.6 lb
Interestingly, I noticed that eating more rice stalled and even slightly increased my weight — something I didn't observe with other carbs.
Gym Performance
I'm keeping my twice-a-week workout schedule (except during my period, when I switch to light walking only). It has been great.
While in Barcelona without gym access, I did push-ups and leg workouts in the room. Convenient and enough to stimulate the muscles.
Sleep
Sleep has been generally good this month. On Day 10, I had one poor night — I couldn't get into deep sleep and woke up frequently. Otherwise, sleep has been consistent.
Heart Rate (Resting Heart Rate & HRV)
My resting heart rate averaged 57 BPM in May, and HRV averaged 36 ms — very similar to last month. Both numbers remain stable with no major swings.
Resting Heart Rate — avg 57 BPM (May 2026)
Heart Rate Variability — avg 36 ms (May 2026)
Skin
No major skin issues this month — just a small pimple near my mouth.
Menstrual Cycle
[placeholder: brief note on cycle timing and pattern]
Autoimmune Update
ITP
This month was eventful — a heavy bleed, two blood draws, and a dosage change. I learned a lot.
Bleeding Episode
After reducing the dosage to 60mg every 14 days, I had a heavy bleeding episode:
- Days 1–2 — okay
- Day 3 — bleeding got heavier
- Day 4 — passed a large clot; was close to taking TXA, but put the pills back, talked myself through it, and waited. It stopped within an hour. Pretty amazing.
During the bleeding period I also felt fatigue, a slight knee numbness, and some inflammation-like feeling around the knees. Sleep was worse than usual.
Blood Draws
| Date | Platelet Count | Notes |
|---|---|---|
| May 14 | 30k | Confirmed dosage too low; immediately up-dosed to 20mg every 3 days |
| May 21 | 30k | Still low — likely takes time to rebuild the reserve |
Barcelona Period
After arriving in Barcelona, I had another menstrual period. It was manageable:
- Day 1 — light
- Day 2 — medium
- Day 3 — medium; passed a clot in the morning (worried it might escalate, but it didn't — became very light by late morning)
- Day 4 — very light
I had originally planned a blood draw once settled in Barcelona but didn't get the chance to. The manageable period suggests my platelet count had recovered above 30k, but the one-time clot indicates it may not have reached 50k yet.
Up-Dose Decision
I increased the dosage to 20mg every 3 days and will hold it for a longer period to observe the effect.
The reason I moved back to this level is that this was previously the dose at which I had no menstrual bleeding — making it a safer baseline. I'm traveling without my regular doctor's care, and I want a level that is both safe and able to handle some stress (menstrual period, exhaustion, or viral infection).
Theoretical effect of increasing from 60mg every 14 days to 20mg every 3 days:
| Time Period | Estimated Platelet Range |
|---|---|
| May 2026 | ~30k (exposed floor) |
| Late May 2026 | 40–60k |
| June 2026 | 50–90k |
| July 2026 | 70–110k |
| Aug onward | 70–120k (stable band) |
Overall, even though I experienced heavy bleeding, I don't see this as a negative. It was an important data point for understanding the minimum Doptelet dose I need.
Platelet Destruction Strength — Extrapolation Model
I asked an AI to create a visualization for my platelet destruction strength over time given my medical history. Here is what it came up with:
Dec 2024 ██████████ 10
Jan 2025 █████████ 9
Feb 2025 ████████ 8
Mar 2025 ███████ 7
Apr 2025 ██████ 6
May 2025 █████ 5
Jun 2025 █████ 5
Jul 2025 █████ 5
Aug 2025 ████▌ 4.5
Sep 2025 ████ 4
Oct 2025 ████ 4
Nov 2025 ████ 4
Dec 2025 ████ 4
Jan 2026 ████ 4
Feb 2026 ████ 4
Mar 2026 ████▌ 4.5
Apr 2026 ████▌ 4.5
May 2026 █████ 5
The up-dose is not a failure, but a test of boundary.
Long Term plan
Even though i reverse the direction and started to up dose, this down dose experience was so valuable, i learned so much about my platelet system.
At this moment, based on waht i know, my goal is to keep the dosage at 20mg every 3 days for a forseeable future, keep my platelet stable at a safe level (above 50k), wait my b-cells to renew and quiet down my immune system. Theoritially I should see my platelet count go higher little by little.
Lupus
I still feel photosensitive — the inflammation around joints, it stingy feeling on a sunny day. I didn't actively avoid the sun. This may be something I need to live with the rest of my life. It kind of bums me out, but you know what, it is okay. I do not allow myself to live in fear in a dungeon.
Learnings
The Platelet System Is a Threshold-Buffer System
This month I was a little shocked to see my platelet count drop to 30k after spacing out my Doptelet doses.
For a long time, I thought I could continue lowering the dose and eventually discover my "true" platelet level. But what I've learned is that my platelet system behaves more like a threshold-buffer system than a linear one. The lower the dose gets, the more sensitive my platelet count becomes to even small dosage changes.
A simplified way to think about it:
Available platelets = platelets produced by bone marrow − platelets destroyed by the immune system
Compared to last year, my platelet counts have been much more stable overall. That suggests immune destruction is likely less aggressive than during the acute phase of ITP — though it has probably not disappeared completely.
As I tapered Doptelet to very low levels, the medication's stimulation of platelet production also decreased. At higher platelet reserves, small dose reductions had little visible effect. But near my current threshold, even modest changes can have outsized impact — because there is less buffer in the system.
What surprised me is that the relationship does not appear linear. A small reduction in support can sometimes cause a much larger drop than expected. Once platelet production falls below a certain level, the equilibrium between production and destruction may become unstable, settling into a new, much lower equilibrium.
In that sense, the drop to 30k doesn't necessarily mean my disease is worsening. A more likely explanation is that I crossed below the level of support my body currently needs to maintain a comfortable reserve. By reducing the dose too far, I may have disrupted a previously stable equilibrium and exposed the true sensitivity of the system near its threshold.
The goal now is not to chase the highest platelet count possible, but to find the lowest level of support that keeps the system stable. If the current dose increase restores that reserve, the platelet count should gradually move back into a more stable range over the coming weeks — suggesting the underlying system remains improved compared with last year, but still requires some support to stay balanced.
Next Steps
- [New] Hold Doptelet at 20mg every 3 days throughout travel, monitor effect
- [New] Plan a blood draw once settled in a new location to confirm platelet recovery
- Monitor the effect of the up-dose on bleeding and energy levels
- Keep strength training at 2x/week (bodyweight when no gym access)
- Avoid heavy workouts before and during my period
- Continue cycle-based fasting and eating until 80% full
- Prioritize protein and fiber first at meals
- Continue limiting rice; observe impact on weight
- Eat clean, sleep well, get regular sun exposure
- Continue using organic cloth menstrual pads
- Continue avoiding screens while eating
- Continue avoiding gluten until platelet count returns to normal range
