Thread by @ErinMariLee

A fear #PwME share is that if we get a new life-threatening illness, we won’t notice because we’re used to being so sick. This finally happened to me last month. I’m OK now, but it’s a miracle we caught it in time. A rambling thread🧵

In late Feb, I suddenly got much sicker. I thought I was relapsing into severe ME as I neared my 3rd trimester carrying twins. My pregnancy symptoms (swollen feet, nose bleeds, aches) got worse, but that was expected, right?

My energy envelope dropped to 30 minutes of upright activity a day and headaches got worse, but that’s life with ME, right? And I developed a wet cough and shortness of breath, but that was probably allergies, right? … NOPE.

Luckily, I saw my OBGYN on day 5 of a migraine or I wouldn’t have said anything. She scheduled me for an extra appt 2 weeks later. At that visit, I had unusually high blood pressure. Doc wasn’t worried, but a family member was. For peace of mind, we got a blood pressure monitor.

4 days later, we found my blood pressure was consistently, dangerously high. We called the clinic to report my numbers. An hour later I was admitted to the hospital with severe preeclampsia. They were going to try to keep me stable for the next 10 weeks while our babies grew.

5 days later, I had an emergency c-section at 28 weeks because the preeclampsia had progressed to too dangerous a level for me. All this occurred before my next scheduled OBGYN visit.

Our baby girls are progressing beautifully in the NICU and I am recovering fairly well. We caught it in time. A team of skilled health care workers weighed the competing risks to the 3 lives at stake and managed to save all of us.

It was amazing to see the best side of healthcare. A large team of people with years of study and experience combined their talent with an abundance of scientific research. They knew the disease, what to watch for, how to explain it to us, what to do.

On the flip side, they did not know anything about #MEcfs or #POTS. They couldn’t help us differentiate my regular symptoms, from the life threatening ones. They couldn’t advise on how to prevent a disabling crash. It was scary going into major surgery w/o that guidance.

Seeing the best in healthcare as they saved my life and now treat our daughters with exceptional care has given me hope. We can do amazing things with science when we want to. We just haven’t directed that energy to complex chronic illness yet. We could!

This experience also opened my eyes to a risk I didn’t foresee being #PregnantwME. With ME, you learn to only mention your top 1 or 2 symptoms to your doctor and downplay or ignore the rest. With pregnancy, your doc wants to hear about all your symptoms.

It was very hard for me to break the habit of trying to avoid my doctors as much as possible and to downplay my symptoms to them. All the signs of a serious problem were there, but I minimized them to my doctors. It was only in conversation w/ family that we caught the risk.

I don’t have any advice for people who are thinking about being #PregnantwME other than to be aware of this internal conflict and maybe ask someone to help you be more open with your doctors.

Overall I am just overwhelmingly grateful and inspired by the care the hospital has provided our family. And I hope I can somehow help expand that level of care to all diseases.

I’m grateful to be alive. I’m grateful for our precious little girls. 💕 Onwards.

Oh, I should add, there is nothing in the literature to suggest that #MEcfs or #POTS increases the risk of preeclampsia. Although we could use more research in this area. My risk factors (age, first pregnancy, twins) were unrelated.

I’ve previously shared info on ME and pregnancy. For #POTS and pregnancy, see this summary by @dysclinic on @Dysautonomia’s site: dysautonomiainternational.org/blog/wordpress…