Monthly Archives: March 2017

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.

Excercise bike

Some changes in my life: now have prescription glasses and a fiancé.

Also, giving up the gym membership, got an excercise (stationary) bike from someone off of Facebook marketplace, which is like Craigslist with a built-in communication system. Medium-low quality, 85 bucks. Digital tracking stuff, resistance knob. Orange. Whoo.

It is kicking my butt y’all. Initial goal was 3 miles a day, but I don’t really trust the mileage tracker. Next goal was 20 minutes a day…. which I quickly (embarrassingly quickly) discovered was unsustainable. New goal is ten minutes a day, which I can do in 2-3 sessions. To be fair, it’s been raining constantly and it’s shark week (aka period time), so my knees are all swollen up and awful right now. Eventually I want to up it to 15, then 20. Music helps tremendously. 

Realistic goals are key, otherwise you get all discouraged, and that doesn’t help anything. Break it into manageable chunks, and don’t be embarrassed- only me and my dog see me huffing and pudding and quitting before that red got chili peppers song is actually over (it was almost on the fade out, I swear). 

I’ve already used this bike in three days more than I went to the gym in four months. 


- How much do you know?

at the Heart of Privacy

K Royal (@heartofprivacy)