nowhere to go but up. (Part II)

Dear Diary,

So, I’d been admitted to Presbyterian hospital with a Clostridium Dificile infection and resulting colitis Friday afternoon, on the 13^th.  The staff couldn’t have been nicer. They had a white board in my room and each shift change they would come in, introduce themselves, and write their names on it. One of the techs snapped a bright yellow band around my right wrist, signaling to everyone that I was infectious and if I left my room, I needed to have a mask, gloves, and gown on. 

But I wasn’t to leave my room, because I was on “fall precautions.” I had to be escorted any time I wanted to get out of bed. I was given morphine in my IV, and assorted other drugs.  I still had problems eating, and couldn’t sit up straight because my colon was so inflamed.  I struggled to eat macaroni and cheese and soup – it took me nearly 3 hours to eat that dinner; my inflamed colon was crowding out my stomach or something like that. I drifted off the sleep.  At 2 am they ultrasounded my liver, which involved the tech coming into my room because they didn’t want me leaving and infecting the rest of the hospital.  At 4 am another tech took one of many blood draws that I would get frequently during the day and night.  Otherwise, I was able to drift off into a nice morphine-induced nap. 

But that was just at night. That’s when the pain was the worse. The next morning, I was still pretty tired, but they discontinued the fall precautions, and the pain wasn’t so bad.  I napped on and off all day.

I also was relieved when I realized I had bought an Aflac policy the previous fall.  Throughout this ordeal I’d missed a week of work, was likely to miss another, and had no more PTO or sick leave left. I hadn't had more than a half day off for illness in the 6 years I'd worked at my job. I hadn’t taken multiple days of sick leave since having a baby in 1987. I worried that they hadn’t really needed me at work. 

I had time to sit and reflect, between episodes of Fixer Upper, et al. I realized I had fallen into a bad habit of self-care.  I'd been restricting and binging food.  I'd been skipping workouts.  I was stressed out, and way more invested in work than even they work required me to be.  I talked with Sweet Baboo about it, and he agreed that I'd been pretty stressed the past couple years.  

I deleted the work email app from my phone.  

That night, on the 14th, I took what was to be my last dose of morphine.  The pain was finally leaving.  I continued eating maraconi and cheese, soup, and peach tea.  

Baboo visited  frequently and taught me to play canasta.  He was busy washing everything at home with bleach, trying to get his long runs in, and looking after his mother, who had now of course, been diagnosed with C. Diff . That night, I requested one last dose of oxycodone, just in case.  But slept through most of the night.  It was my last dose of pain medicine, and the first full night of sleep I'd gotten in weeks.

On Sunday the 15th, I got to take a shower.  There’s nothing more amazing than a shower.  I also had a cheese omelet with a little bit of sausage. My liver enzymes were returning to normal.  I had a chicken sandwich and more soup. I was getting pretty tired of watching HGTV but it was really all that was on. I was getting antsy and was tempted to don the gown and gloves just to walk a lap around the 3^rd floor.

On Monday, the 16^th, the doctor said he was inclined to let me go home, but he wasn’t 100% sure.  I told him that if I went home Monday night, I could wake up in my own bed, go sit in the sunshine and walk on the path behind my house. They delivered my prescriptions to me bedside, a very cool service they have there at that hospital, and Baboo took me home about 8:00 that night. 

The next day, I struggled to walk a mile on the trails behind my house. It wore me out.  The following day, I walked 2 miles and slept for a couple hours afterwards.

I saw my family practitioner on Thursday the 19^th, and she signed off for me to return to work. I was weak.  My PCP said, “you’ve burned through all your reserves.”  The 15-lb weight loss in less than a week wasn’t fluids, and it wasn’t muscle; it was an imposed fast that probably sucked all the glycogen out of my muscles.  I really felt like I was starting all over. My fitness had been eroded away.  

The first two weeks were tough, especially the day I set out to walk 6 miles and had to bag it at 5.5 miles. That was tough on me emotionally.

But, as long as I eat carefully and rest, my progress has been steady.  Last week, I started actually jogging longer lengths on the trails and did an 8-mile hike.  I had a brief setback this weekend, partially related to allergies, and maybe partly due to the increased mileage, but I rested this weekend, and then this morning I did a 4-mile hike-jog that felt pretty good.  I will never take strength for granted again.

Every time I get the slightest cramp in my stomach or gut, or feel tired, I worry that it’s coming back.  I take probiotics at least 2x a day and my post-workout smoothie includes a banana and kefir.  I search the internet way too much looking for assurance that this won’t come back.  

I’m afraid of lettuce because of all the E. Coli recalls.  I use a filtration pitcher at work.  I’m weirdly paranoid about germs and bugs now.  I won't eat stuff from the sample bowls at the store.  Obviously, there’s no guarantee that it won’t come back.  But hopefully, I can beat the curve.

I had to slowly add food groups back because nobody knew what kind of shape my gut was in, what good bugs were left, and what enzymes I might or might not have left. I am the probiotic queen.

I bought myself an Apple Watch, a little tech bauble to mark my new life devoted to good self-care, and to mark the end of this particular grueling experience.  I love all the kudos and chimes it gives me.  I also bought a laptop, which I haven' had in years, possibly why I haven't been blogging.  Blogging from my phone is a bitch.  

With respect  to my fitness, I am starting over.  I’m working my way up again.  I’m following a training plan that Himself and I devised. 

I canceled 3 planned endurance runs this past spring.  My next trail race will be more of an energetic hike, in Montana, called the “Rail Trail Run.”  It has a generous cutoff and I plan to take my poles and plenty of water.  It’s flat with a slight net downhill loss of elevation, and I’m really hoping I’ll be back close enough to finish it, even if I had to stop and rest every now and then. 

So that's it.  That was my spring.  And this is where I am now.  Starting over, from rock bottom.  

Nowhere to go but up.

 ...

Rock. Bottom

Dear Diary,

I am sitting here in my living room feeling pretty good about the 31-mile week I just had.  31 miles.  Thirty-one.  I used to do that in a day. And this is the most miles I've gotten in the past month, since I started recovering from C. Diff Colitis in April.  It was, without a doubt, the sickest I have have been, and the most pain I have ever experienced for 4-5 days straight.  It was like being in labor.  Waves of pain wrapped around me, usually worsening late in the evenings, carrying on through the night, and abating slightly the next morning.  It is a cautionary tale of what happens when providers don't pay attention, or lack the right training to manage symptoms appropriately.

Part I of II.

In February and March, I had a respiratory thing.  I developed laryngitis from the perpetual coughing, over and above the usual coughing I'd experienced for the past 2 years.  But I had an appointment with an Ear, Nose, and Throat doc...so I gutted it out.  It was actually getter when I saw the physician's assistant (not doctor) who examined me.  She me scoped me and said, "you don't have acid reflux."

Thank god, I thought.  Now everyone can shut up about that.

She prescribed a nose spray...and an antibiotic called clindamycin.  I announced it in rounds the next day at the hospital where I work as a social worker.  The doctors sucked air through their teeth when I said the word.  I didn't know why then. But I know now.  And that sharp intake of breath from my colleagues who went to medical school, that was warning #1.  I just didn't know why at the time, and wasn't interested in hearing about it.

Within a few days I was breathing better than I have in years.  I visited my mother-in-law in the hospital who unfortunately had contracted bacterial pneumonia and was also put on broad-spectrum antibiotics.  I visited her in the rehab hospital where she was for about a week, and drove her home from the rehab hospital. She had diarrhea, which they thought she might have from a norovirus.  Mornings, I started practicing hill repeats, and on March 23rd, I took my last dose of clindamycin.

A week later, on Good Friday, I flew to Pennsylvania for a trail marathon.  I was freakishly tired that afternoon and evening.  I ate some fried calamari, but just wasn't hungry for pizza.  (Warning #2)

That was the night that the diarrhea started.  Except it wasn't like the usual stuff.  I mean, at first it looked like your garden variety diarrhea, but then eventually it became clear, amber-colored.  Maybe a tablespoon at a time.  Like jelly.

Fuck this, I thought.  I'm not ditching this marathon.  There was a much longer run going on at the same time, which meant I had 12 hours to finish it.  I would walk it.  It was exhausting.  I drank like crazy, and walked through the woods in the Pennsylvania countryside.

I flew home.  I wasn't hungry.  I turned up my nose at fried chicken.  (Warning #3)

On Monday, April 2 I went back to the ENT.  She asked me about breathing, coughing, etc.  All were good.  I mentioned the diarrhea, and her eyes widened.  "If you still have that in a couple of days, let me know."  Then, she looked in my mouth, and frowned.  "Do you have thrush?"  I laughed.  No, of course not. Probably just stuff from the chronic sinusitis.  But later than night, I thought of that again.  I went to look in the mirror.

Fuck.  I have oral thrush.  I also still had a couple tablespoons of amber jelly coming out of me every couple of hours.

The next morning, April 4, Day 5 of the diarrhea, I went to Urgent care.  I told them my story, and said, I'm really worried that something bad is happening. The PA patted my hand.  "We're going to test you for diabetes."

What?  No. I don't have diabetes.

She acted as thought I hadn't said anything at all.  "Yeah, we're going to test you for diabetes."

She also tested me for pregnancy, salmonella, cryptosporidium, shigella, ghiardiardia, all were negative. She gave me a script for the thrush.  Then I told her, "I'm having trouble eating.  My stomach is cramping and it's like I can't get food in.  I've been drinking gatorade and Boost."  She responded, "you have to stop that right now.  It will make your diarrhea worse."  She gave me a handout of the BRAT diet, and sent me home.  I made an appointment with my PCP for the following Tuesday, (April 10).

Days 6, 7, 8--April 4, 5, 6th...went by.  Nothing changed except I started having an ache in my middle.  It was worse at night.  I started eating Tylenol and Advil every 4 hours, and getting up at 11 pm and spending the next few hours with a heating pad, going to the bathroom constantly.  Always that same, weird stuff coming out.  I couldn't eat.  My daily calorie intake plummeted to between 400 and 900 most days.  I started googling CLYNDOMYCIN and  DIARRHEA and reading the articles.

I kept seeing Clostridium difficile. It rang a distant bell in my mind.  I think I did a training on this.  Something about gloves, and gowns being required around someone who had it.

Shit.

I wrote the PA and asked her why she hadn't tested me for it.  No response, except a scripted one from another PA telling me I should go see my PCP.

On Tuesday, April 10, I saw my family practitioner.  She ordered a test for C. Diff, and started me on treatment before the test came back positive.  I had lost 10 lbs.  I called in to work, and they immediately employed a "terminal cleaning" in my office.  I started taking Flagyl.  But it was too late.  The next day, the pain was no longer going away with Tylenol, and I was exhausted and dehydrated.  I had started throwing up.  I was too tired to stand up long enough to comb my hair. My weight had started climbing again back up to normal, but I couldn't sit down for long because of the pain in my middle. I could only lie down.  That evening, Sweet Baboo was working, so I asked Dread Pirate to take me to the emergency room.

The ER dictated to his scribe as he examined me.  He used words like "starving" and said my urine was brown.  My liver enzymes were elevated.  He dictated, "patient is writhing."  He asked me if I wanted morphine.  For the first time in my life, I said yes. I drifted off to sleep. Something during the night Dread Pirate and Sweet Baboo switched places, and I was offered a choice between being admitted and going home.  I chose the latter.  I was sent home about 2 am on the 12th of April with scripts for Oxy and an anti-nausea medication.  I went home, and asked Sweet Baboo to get my some loaded baked potato soup at Kroger.  It's loaded with cream, salt, and potatoes, and I was able to get my calorie count up for the first time in days.

But later that night...the pain started up again, like it did every night.  Oxy didn't make a dent.  The next morning, I asked Sweet Baboo to take me back to the hospital.

And that's the backstory to why, on Friday the 13th in April, I was admitted to the hospital, diagnosed with C.Diff Colitis, on contact precautions, in a single room with intravenous everything (including morphine).

To be continued.