Author Archives: K Royal @HeartofPrivacy

On Mother’s Day

I remem18447021_10212646691513353_7522463041141553912_nber a special moment when I was a single mom in nursing school.  My girls were in the bath one morning. Charis was 1 & Dazlin almost 3 and I was brushing my hair or something when Dazlin said, “Momma, you’re so beautiful.”  Charis, who could not talk well (yet), was nodding her head yes – emphatically. It gave me a warm, loving feeling. I would do anything for these two girls. I felt that then. I feel it now.

At 20, the doctor told me I had a pre-malignant tumor on my ovary. We did surgery and found other complications. I was in my junior year of college on my journey to a PhD.  My doc told me if I ever wanted kids that I needed to get pregnant now. Nope. That did not fit my grand life plan. People joke that I must’ve immediately gone off birth control. Nope. I went on more. And apparently, God knew better than I did – I discovered I was pregnant in the first few weeks of my senior year.  This was after an earlier miscarriage.

I’ve posted about being pregnant before, so I won’t go into those details here. Rather, let me reflect on being a mom. My girls define me. They make me a better person. They make me fight to always do the right thing.

In my daughters’ eyes, I am a hero. I am strong and wise and I know no fear. Though the truth is plain to see [they were] sent to rescue me, I am who I wanna be in my daughters’ eyes. ~ Martina McBride.

This. This is what it means to me to be their mother.

 

Things I don’t know: to the hospital and beyond.

medicalOne of my doctors once told me that I am so bad about never slowing down, that when I do call her and complain that I don’t feel good, I usually should have been in the hospital two weeks ago. I think she may be right. In February, I did not feel good. And I developed a kidney stone in my left kidney.  I’ve had kidney stones before (in my right kidney) and I don’t go the hospital for them. I take meds to knock me out (note I am allergic to almost everything good, so I have limited choices), drink a gallon of tea, and go to sleep. I wake up. I pee. No more kidney stone.

But this time. the next day, both sides hurt. Right at the waistline – called the flanks. It’s where you put your hands on your waist… that’s the kidney spots. They hurt the next day too. And then I started feeling cold. In Arizona. In 80-90 degree weather. Oops, no thermometer. So my husband bought one on the way home and my temp was 101.9. We went to the ER at Mayo’s – conveniently 2 miles up the road.

Now why the ER? Well, kidney pain. Need fluids likely. Cannot get IV fluids at an urgent care, so ER it is.

I felt kinda silly, walking in on my own, just some kidney pain. But hey, they took my vitals before I could even write my name down – BP was 123/100. whoo boy. temp over 101. pulse 140’s. They took me back, free flowed two liters at a time into me. took lots of blood. They were gonna send me home, but my BP with fluids, dropped to 78/40. So they admitted me.I had pyelonephritis.  I also had sepsis, but they did not tell me that. I knew the symptoms of sepsis and that I met the criteria.

That was Friday. Heck, maybe it was Thursday.

Saturday, Ii was begging to go home. I mean, the ER doc was gonna let me go when I came in except for my blood pressure and my BP was fine now. But see, my pulse wasn’t. It had never lowered below 110. even with IV dilaudid on board (one of the very few I am not allergic to).  I also was having chill spells (shaking, teeth chattering) for about an hour every time the dilaudid wore off. So I swore off the pain meds. Turns out, the dilaudid was keeping those chill spells under control.

So here we go. Saturday night. And my face got numb. And my chest started squeezing. I started getting really hot. And sweating. I don’t sweat. I have sjogrens (in addition to lupus and fibro and celiac, blah blah blah). So I was worried. My husband was sitting in the room with me and I did not want to worry him, so rather than calling the nurse, I just waited for her to come by. Yeah…judgment was a tad off.

When she did come by, she quickly got the doctors and they ran all kinds of tests – heart attack, etc. My platelet count is never high and in stress, it lowers to below 100 (not good). So there could have been any number of things going on. My temp was up to 103 something. I was shaking, short of breath, pain in chest, face numb, not thinking clearly. BP up, pulse up. it was simply ugly. I was truly afraid I was going into septic shock. And sepsis kills otherwise healthy people. The dangers to someone with lupus or other autoimmune issues? – exponentially higher odds.

And then everything stopped.  I went to normal. They gave me one more dose of rocephin IV the next day and discharged me home.

And I was exhausted for three weeks. Not back to “normal” yet. But I did read my discharge summary conveniently posted on the Mayo patient portal. Turns out that in addition to sepsis, I also had acute renal failure. WHAT?

That kind of freaked me out. No one told me that. Um. hello. still a little freaked out, but gonna do the right thing and follow up with docs. I don’t want to die now.

This is what people with lupus, sjogrens, etc. etc. etc. live with. I suppose we all do. You cannot count on the future. You cannot live in the past. We live in the present and should treat it as a gift. I got lucky, by the grace of God.

Active Shooter (FBI Civilian Prep & Response)

fbi-active-shooterRun. Hide. Fight. The local FBI Citizens Academy Alumni Association hosted a program on Civilian Active Shooter Preparation and Response by the SWAT Senior Team Leader – and it was a packed room. What a terrifying, but amazing program. (He definitely looks better in the picture than yours truly!) The very first lesson was  “No Names.” One of the few consistencies among shooters is the desire for fame. So when talking or teaching, no names of shooters are discussed. They get no fame.

SA Gallante reviewed some of the more prominent active shooter cases in the US, such as Columbine, Sandy Hook, Virginia Tech, and Fort Hood and included incidents from India and Paris. We watched videos (and listened to audio of 911 calls) that were really hard to watch as they were recordings of actual events. One video was of Kristina Anderson, a college student who survived the massacre.

Some of the key points we learned is Run, Hide, Fight. Video Pocket card DHS website This is not a sequence of events necessarily. Its the foundation for options and plans. The following is my recall.

Run: If you can run away, do so. Know where your exits are. The Station  nightclub fire in Rhode Island in 2003 killed 100 people because most tried to get out the same door they came in when there were other exits available – one behind the stage (not viable once the fire took off), one behind the kitchens that was largely unknown, and another exit on the far side. So…know your exits. You don’t have to be paranoid, but when you go into a building be it your work, a restaurant, a theater, whatever – identify your exits. Consider non-traditional exits – windows, punching through drywall, etc. The story of Rick Rescorla is largely unknown, but after a 1993 truck bomb in the world trade center, he practiced escapes with co-workers – who probably teased him unmercifully and got impatient with his drills. However, his plans and preparations saved over 2000 lives on 9/11 and he was last seen going back in for others. So run. Take others with you, but if they won’t go, don’t delay arguing with them – run. Get out, call 911.

Hide. If you can hide, hide well. Get somewhere that you can put up barricades in the entrance. The more barricade the better – heavy items, lots of items. Lock the door, turn out the lights, and turn off phone sounds. Let the attacker think it is an empty room and/or one that he/she cannot get into easily. If it is a door that open inward, find a way to stop it from opening. If it opens outward, restrict the hinges from working. You can even use a belt, rope, electric cord, shirt, plastic bag – anything to put around the handle to pull against to prevent it from opening. And don’t stand in front of the door. But also don’t stand on the other side of the room either (unless you are trying to get out. If the shooter tries to enter, you are a target who cannot fight back if you are on the other side of the room. which leads us to…

Fight. Fight for your life, because it likely is. If you can run away, run away. If you can hide, hide. But if you need to fight, do so with every tool you have and with commitment. If you are hiding in a room and the shooter tries to enter, stand to the side of the door and attack with everything you have. The shooter is there to shoot. If you are where you cannot run and you cannot hide, then you fight, because your life likely depends on it. It’s the last option, but if this is the option you are left with, then commit fully.

SA Gallante was very polite when asked the inevitable questions of civilians with guns. He is trained. And would not likely want to be in a situation with an untrained civilian who has a gun.

What we learned was to have a plan, be prepared. Practice. Don’t be paranoid, but when your brain goes into fight or flight mode – the hands start shaking and those are the ones who die in the horror movies because they cannot get the key in the door of the house or car. Don’t be that person. Learn to calm breathing and think.

Incredibly impactful program.

 

Consistency is Key

consistencyDespite many opinions to the contrary, I am a person who lives by structure, consistency, and predictability. This means that I have to apply it to everything or I mess up. The keys have to go in the same place every day.  My schedule must be centralized. This also applies to my nutritional plan.

For a while now, I’ve been decent on calories. But the wrong kind. Apparently, I need protein, protein, and more protein. Well, don’t depend on me to have a creative idea for meals during the week. I do much better same thing for breakfast every day. Same thing for lunch every day. Same thing for supper every day.

Take me off-script and there is no telling what happens! (it’s all fun until K has chocolate)

What happens is I go off the eating plan, then off the exercise plan, then I gain back 15 pounds I lost and fought hard to lose those pounds. I would love to put them in a different place and never find them again!

So here we go. strict grocery shopping. strict eating. Consistency is key!

Unemployed and Unstoppable: A draft

So I drafted this last June and it makes for a fascinating review. Everything in the previous draft is in normal black with new comments italics and blue.

Let’s talk about two facts: 1) Stress can send someone with Lupus, Sjogrens, Fibro, _______________, into a flare. And these flares can last for weeks or months. 2) I lost my job last Friday and I am not stressed. started getting a little stressed around September.

In fact, I am trying not to search for a job, because I feel that something is coming. Something wondrous. I have a friend who laughs every time I say something would be the perfect job for me. After years of this, she finally understood they all would be. With my ADD, zest for life, passion – whatever you call it – I love doing lots of things.  But I am not looking right now. Okay, I’m looking, but not too hard and I’m not applying to a lot. Which is really hard for me and my personality. still not looking hard. loving consulting! my background stays with me… love a steady paycheck and if the right job came around, I’d take it. but I don’t want to move. well, unless it’s that once in a lifetime opportunity.

So I took the week-end off. My hubby is away at convention (yeah, I should’ve just jumped in the car and driving to join him in Vegas). So it was just me and the animals. I thought come Monday, that I would hit the turbo mode, but I didn’t.

Instead, I am refusing to let this get me down.

I have so much to get caught up on – my dissertation! big item that I want and NEED to check off my list. still need to do. Organizing my house. still need to do. I have carted stuff around from 5 states that have never been unpacked still need to do. (and I’m sure I’ve lost stuff I forgot I had).  And I am still recovering from my concussion back in March.  still need to do. Apparently, 3 months is the normal recovery time, so I am just past that…not even an anomaly yet. Officially an anomaly now. in another few weeks, what I’ve lost is likely permanent. or I’m just getting old.

My plan is to rest and catch up on stuff. And if a promising job comes along, I’ll apply. But I won’t stress about it. still on the ball on this one.

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.

 

 

They Just Don’t Make ’em Like This Anymore

aunt-dotDeath. It’s a natural part of life. And perhaps as a former hospice nurse, I came to see death as even more natural. Yesterday, we celebrated the life of my great Aunt Dot. As my grandfather’s sister, she was my great aunt, not just a great aunt (ya’ gotta listen for the inflections….).

To quote my own toast to her:

She was a beauty and she was bawdy. I saw her nearly every day of my life growing up. And I would stop by her house many times –  oh, she lived miles away (uh, it was half a mile as I found out today). Everything is smaller once you grow up. Except her. She was larger than life then and still is.  To Aunt Dot.

—-

Oh, she was a character. She and my mom were best friends – for something like 40 years. I suppose with that relationship, I saw something of her that many of her younger relatives did not see. She had very practical advice on life and never hesitated to dispense free of charge.  Some of it, I could not share in polite company (she really loved men with big feet!). And her guidance on how to tell a skirt is too short is quite accurate, but thoroughly burlesque.

She was a natural redhead and gave life to the rumors. She had a laugh that could light up a city and she could outdrink the vikings – I always saw her as a Valkyrie godmother. She loved good times, good food, and bad boys. But she was a southern lady to the tips of her toes. Some may take offense at my perceptions of her. But they are my perceptions and I mean no disrespect. Lord knows if I did, she’d take me to task for it, even now!

She worked all her life. And most of it was at Lockheed. She was a riveter. So when you think of Rosie the Riveter – that was Aunt Dot. Strong arms might be part of it, but frankly, strong legs were the most important. She was up and down a ladder, 100 times a day, riveting planes.  And she did that until she retired.

And if she did something, she did it 200% – loving, living, laughing, and well, grudges. She could hold a grudge! She was a red head after all. But again – she loved. So while she might be mad at you, if she  loved you, you would be forgiven. If someone hurt you – she took up her war ax and went to battle. Sometimes, she took the enemy on headfirst and sometimes, they’d never know who she knew (and she knew many) and where their downfall started. No prisoners.

I see her having personified this quote by Hunter S. Thompson:

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!”

Aunt Dot – the passing of an era. A great lady. Beloved. I’ll miss you.

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at the Heart of Privacy™

K Royal (@heartofprivacy)

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