Monthly Archives: January 2017


I get strep once or twice a year, have for the past five years or so. Last time, it took two rounds of antibiotics to kill. This time, they started me off on a stronger dose. I was talking to coworkers at a meeting today, after being out yesterday, and they were shocked that I get it so often- apparently it’s only normal for kids/preteens to get it. I’ve had various people of all medical know-how levels recommend getting my tonsils removed. That’s not a fun thing to consider. I’ve never had any surgery, never been under anesthesia, and until last year had never even broken a bone (officially, anyway- there was a sketchy finger situation in 3rd grade). Might go see a real doctor next time I get strep, instead of a Walgreens clinic. Discuss some less-than-exciting options.

if you have autoimmune issues, you have to seriously consider more extreme preventative actions. Apparently.

Turmeric tea update

Gives me gas. My boyfriend declares this experiment over. 

Pregnancy: Life and Death

My first child almost killed me; I almost killed the second. Pregnancy. My whole life, I wanted kids. I never wanted the husband – but thought I had to have one (in retrospect, perhaps I should have stuck to the no husband route). Doctors now hear my history and tell me that I should never have had kids, I am too high  risk. Well, God planned differently. I was on birth control with both – two (or was it three) forms with the second.

I married at 19, had my kids at 22 and 24. Before the first one, I had a miscarriage at a very very early phase. With ongoing issues, my OB-GYN did an exploratory laparoscopy and found a pre-malignant tumor on my ovaries and extensive endometriosis.  He told me, this doctor who delivered me as a baby, that if I ever wanted kids, I needed to have them now. People think I immediately tried to get pregnant – oh heck no, I immediately went on stronger birth control. I was in college. Going into my senior year. I was applying for PhD programs – no time for kids.

And I got pregnant.

I went into labor at 5 months and 3 weeks. I was put on magnesium and monitored regularly. I was contracting, but they were ineffective (magnesium impacts muscles). I continued to dilate and my pelvic bones separated. So… yes, I was in labor. She held off until 37 weeks…just long enough for me to finish classes but to miss one exam. And oh boy, was it fun to be in college pregnant. not. I could not remember where to park, what building to go to, or anything. My GPA dropped alarmingly, but I passed. All my professors and the administration were put on notice (small Baptist College) and my roommate at college (college was 100 miles away, so I stayed at college during the week and went home to hubby on week-ends). One professor started every class by bringing in a fresh daily newspaper and his pocket knife – saying he was ready if anything happened during his class (newspaper is one of the most sterile materials readily available, not so much the pocket knife). I had to stay on seizure medication, but stopped the cardiac meds. Yeah, I was pretty high risk.

I went into the office in my 37th week and I was 4 cm dilated and I gained over 50 pounds. The doctor said I could go have her now or wait till the morning. I waited. I needed to shave my legs. Right?!

So the next morning, I went in. I was 5 cm dilated. Contractions came fast and heavy, but I felt basically nothing due to magnesium in my system. I was not a nurse at the time, so I did not understand once the pain did start why they would not give me anything – platelets were at a 2. That’s bad. people, really bad. I progressed much faster into full labor than anticipated (duh, I’d been in labor for over two months), so after a risky epidural, we went into the delivery room. I lost over 2.5 liters of blood vaginally. And they could not give me blood transfusions due to my autoimmune disorder and multiple antibodies (I still don’t know a whole lot about this, but apparently, my body will reject blood like it can reject organs), so I got platelets and I think plasma.

But did you miss that? I lost over 2.5 liters of blood. That’s about half the blood in my body, is considered a severe event and most people die from that much blood loss, especially that quickly. People can die from a 25% loss. I survived. As a nurse, I’ve seen women die in those exact circumstances. Yet, I lived. And my seizures disappeared. Yea. Oh, and we had RH incompatibility. I was negative and she was positive. So I had to take a shot. No real risk to first baby, but we monitored during pregnancy due to the earlier miscarriage.

During my second pregnancy (created while I was on 2 or 3 birth controls), I thought I was having a miscarriage at about week 6. Rushed to hospital. They did tests, ultrasound, etc. and there she was – healthy and whole. I learned years later that I miscarried her twin. I was actually okay not knowing that, because I cannot imagine when the right time to tell me would’ve been. My husband and I had separated, but then found out I was pregnant, so we stayed married – although not living together – until she was born.

And she was a doozy during pregnancy. My first one – no problem in carrying her (other than carrying her long enough) – this one?? Dropped into birth canal like a little pig in a blanket all swaddled up. Not a good thing for her. So I had to do exercises to get her out of there and MAN that hurt when she came back out into the normal belly region. And she was active like crazy. That “quickening” at 4-5 month? nah. She was break-dancing visibly. You could watch her doing backstrokes 24 hours a day. And then she stopped. Slapping my belly would not make her move. Ultrasound could not even get her to move. So I was ordered to drink three mello yellos a day. More caffeine than Coca-cola. She moved.

Labor started at 5 months and 1 week. Went on magnesium. at 30 weeks, I was lying in bed and felt a drop of pee (don’t get grossed out, babies like to sit on our bladders). And one little drop after the other. ugh. I called my mom who told me to find my old feminine hygiene products (liners) and get used to it…it would only get worse from here. Babies that like to sit on bladders tend to stay there. Well, it kept doing it. I called the hospital and they asked me what it smelled like. The nurse apologized for asking (cause that is kinda gross), but with my sensitive sense of smell, I could answer. Very sweet. Yep, water had broken. No gush of liquid. Just one little drop. then another.

I called my mom in a panic and she was already packed, because she knew, she was just hoping that over the course of 6 hours, it would slow down and we would not have to rush to the hospital at 1 am.

So at 30 weeks, broken water means the baby will be born within 3 days. Either she will be born or infection sets in and they birth her. Here come the IVs, the emergency ambulance to the specialty hospital 100 miles away (no preemie unit at the hospital and no specialist OB-GYN for my complicating factors, plus she was also Rh + to my -). All the way to the hospital, the EMT kept saying “you are not having a baby in my ambulance. You are not. I don’t do babies!” Apparently, broken skulls okay – babies, not so much.

Three days later, baby by c-section. She did magnificently. 4 pounds 7.5 ounces (that .5 is important when that small). Brought her home and three weeks later, she starts turning blue around her lips and eyes very briefly. Like it was imagined. My mom starts counting her breaths and she was stopping every few minutes. Again, no preemie unit, she was still 7 weeks from due date. I was watching her die. Her breathing would drop to zero, then her heart rate and we were all fighting to keep her going. The emergency team arrived from the specialty hospital (100 miles away) and saved her. She was back in for two weeks and came out with tons of equipment. My church started a prayer group at 10:30 pm the night all this occurred as I watched her lay there without breathing – and they continued until she was discharged. I had to learn how to do CPR on a 4 pounder. one finger. She had several episodes over the next six months, recurring pneumonia for three years, bronchitis for seven (until we moved to AZ) and was the most frequent patient at the urgent care center who kept her chart at the front desk.

She had chicken pox three times. Yes. three times. Guess who also wound up with autoimmune problems? Both. My gene pool is a swamp. And some of their family believe it is all made up. That neither have lupus. But that is a story for another day.

They are now 23 and 25. Brilliant, beautiful, healthy, accomplished. One with a master’s degree in education teaching STEM at a Title I school and the other in two master’s programs now.

So my first almost killed me and I almost killed the second. It is no wonder that my mom begged me to have no more kids. Neither of us could stand the thought of watching another one die. And for my mom, that included me.

Every mom out there has a story as do women who have been pregnant or tried. My story includes two living children. Two miscarriages. Two near-death experiences. Doctors now tell me that they would never have recommended that I have kids – too dangerous for me and the babies. No kidding. (turns out I have much more wrong with me than was known at the time, but hindsight is 20/20). What would I have done had I known all this beforehand? That I was putting lives at risk? No one had the right to dictate to me what was best for my body and my life. Many say the first doctor should have done an emergency hysterectomy as I was losing blood. For me, I took reasonable precautions. I was on birth control. I risked my life and theirs. Some would say that was not the right actions to take. I could have left my firstborn without a mom. Was that responsible? I have two amazing daughters. It could easily have gone the other direction and no woman can be criticized for making a different choice.  I am pro-choice.



Turmeric tea 

Essential oils was a bust for me, now I’m trying turmeric. I got some turmeric in the spice aisle of a regular grocery store. Mixed it with cinnamon and ground ginger, put it in chamomile tea with some creamer. 

Looks thick, tastes watery- could do a different tea, maybe English breakfast, and add more spices. Pretty acceptable nighttime drink. 

I’m drinking green tea and/or watered down cranberry-grape juice during the day, and now this at night. We’ll see how it goes.

Spin class

Got a gym membership a while back for low impact stuff. Tried spin class today…

Tried spin class for the first time, on the first day of my period, on a Monday back at work, on the third rainy day in a row, because I’m a moronic masochist who decided hell was too much of a spa treatment.

I may have just given myself a permanent Walking Dead lurch.

Don’t be me.


update: just diagnosed with strep. I had strep when I pulled this shenanigans. Can’t decide if I’m more impressed with myself or disgusted…

also: just got to cvs or Walgreens clinks for simple sickness diagnoses and meds. Wayyy faster and cheaper.

Great resource

This site/page has everything- explanations, news on treatments, personal stories, stats…. it’s a great place to refer people to.

White hairs

My little terrorists have settled antifreckles on my scalp, giving me white hairs. My antibodies are attacking the melanin in my skin which creates white spots called halos- I have several on my shoulders, a couple on my face and legs, and apparently now a couple on my scalp. Honestly, if this is going to be the focus of my lupus, I’m fine with this. Better white hair than failing kidneys.


- How much do you know?

at the Heart of Privacy

K Royal (@heartofprivacy)