Homeward Bound

Monday, October 16, 2023

 i may decide to write here more. Hard to say. 


#1 I am alive. Heart continues to heal and recover and do it's god damned job. One flare up of pericarditis...but I knew right away because I can feel the rub under my breastbone. May none of you EVER become so familiar with the feeling of pericarditis that you shoot off an email to your cardiologist to say "HEY! I am pretty sure my pericarditis has returned"

and then find yourself in a 7 am echocardiogram. It had returned and it was treated and I am Ok now, although Terrance has never stopped being the Heart failure police.

Mayo Clinic, it seems, does not fuck around. 

#2. I quit my job. Yep. Up and walked away from a tenured position. Why? because it was literally killing me. How many organs need to fail before you get the bag of dog shit on fire message left on your front door?

#3. As part of quitting said job, we moved back to Vermont. In January. I wouldn't recommend it. I also had to medicate an infamously skittish cat and then haul him cross country in three separate flights. I should have medicated myself too. If the gabapentin wasn't tuna flavored I might have thrown some down my throat.

#4 Housing in Vermont is really, really, really hard to find. The January part didn't help.  We had a massive three bedroom, 2.5 bath, with two car garage in Wisconsin. Backyard...the whole works. Vermont? About the size of what we lived in during our first years. TINY. We pay triple for this Vermont place.  TRIPLE!!

C'est la vie. We look for houses, or builders, or both.

#5 I have inexplicably become a woman who gets her nails done. As in I have standing appointments.  These are my real nails and they look amazing.  Who knew that at 53 I would suddenly morph into a lady with nice nails

#6 I have also become a woman who can't seem to finish things. Last episodes of shows, rugs...just things. It makes me too sad. Honestly. Terrance tried to get me to watch the end of Reservation Dogs with him and I flat out refused. Left the room. Began to cry when he came back into my bedroom because I couldn't bear to think that their lives became sad, or that one of the girls disappeared , or they died...

I think it is the weight of adulthood. 

#7 Hang on to your hair stylist. Tip them extravagantly. When you move and lose them it will take you 10 months to finally find someone who doesn't fuck up your colour.

#8 Find a job you like and that pays you what you are worth. Its nice. I also don't have to have an IV of Ativan to get through every meeting with a dean.

#9 Today, I finally got a consult with a psychiatrist. Yep, its taken almost 10 months.  She commented that Mayo sent an crazy number of pages in a medical file. I actually laughed. "I'm sure they did", I said. In whatever I must have filled out in May I wrote comments about the standard. questions. 

She reads "You wrote here that your childhood was .....stressful."

When I tell you that I guffawed. It was unseemly.  My response "That is the understatement of the century"

Otherwise I like her.

#10 Terrance and I celebrated our 27th wedding anniversary on October 5th. You don't - you can't - realize what it means when you marry.  I think if we did no one would do it. Standing there at my wise age of 26 and being so sure - so, so sure - that you know everything and that you will do it all right, and better and more perfect. 

But you don't. You can't. The best outcome you can hope for is that you like the people you become. Individually and together. There were easily 7 years in which I really, really did not like my husband. I don't say that to crow about how we made it through and look at us! No. It was hard and awful and I despaired. Our daughter got to watch that and it makes me endlessly sad that she had to witness that between two adults who love her.

Our marriage is peaceful. He brings me bouquets of flowers every Thursday because he knows it makes me happy.  We both work from home  - him full time and me three days a week. We just keep company. 

I think it is the best thing you can have.

P.S. Emily has a Master's degree. Historic Preservation, University of Vermont Dec 2022.  


 The first few days home were terrifying. There is a PTSD that marches alongside BIG health issues and everyone in my family now has a healthy dose. 

I mean even tonight I was laying on my belly watching tv when Terrance ran in and said "Are you Ok? Is everything all right?" I looked up at him and said, "Yeah, I'm fine, why?"  "Because when I see you laying like that its usually because you don't feel good"

Poor man.  Now, in his defense, Dawn standing and flopped forward onto her belly was my preferred stance during heart failure. Apparently it takes pressure off the heart and is an actual documented "thing" about heart failure. All I knew was that I could breathe better so it became my default position. I got so accustomed to it that I continue to do it. It's comfy.  Not so much for him.

Despite my "no big deal" about being in the hospital....home was scary. Do you know those "in sickness and health" words that are in many wedding vows? Um, yeah. I was cashing in on those words HARD. 

In the hospital, Terrance had to bathe me. I would stand up and he would take these warmed cloths and wash me. Have you, an adult human, had another adult human wash you?  That, more than anything else, encapsulated how weak I was. I needed him. I needed his help.  At home, I couldn't make my own food, or walk up and down stairs. Shit, walking the 10 steps to the bathroom in my bedroom was a lot.  I would slowly walk to the bathroom, then slowly walk back. Rest, then try to climb back up into bed. 

Terrance would run my baths, wash my hair, get me lotion and then into a clean nightgown. He got a crash course in low sodium cooking because I was banned from the salt train.  (Sob, I still miss salt sometimes)  He monitored my fluids because I was only allowed 64 ounces a day to keep the fluid from building up. And he listened to my breathing because I still sounded like shit, gurgling away like a bubbler, then going quiet so he thought I had died. The man slept in a chair staring at me for weeks.  No wonder he has PTSD. 

Oh, and pills? I got the pills. Lots and lots of pills. The record high was 22 pills a day.  Blood pressure, heart rate stabilizers, pericarditis meds, diuretics - and then the depression/bipolar meds, diabetes, my regular statin.... Open up, swallow them down. 

They had warned me that finding the right medication titration would be ...rough.  Given that I believe that nothing will really affect me - I was dubious.  First med down? Losartan. I got the cough. You don't want a cough after heart failure because, well, a cough is a sign of heart failure. Tried another med. Not good. Tried a third, meh, Ok. 

This went on with medication after medication. We would find my therapeutic dose and then move to the next med to titrate me up.  The thing that we don't talk about is that with these medications with my condition the only way we know we are at your therapeutic dose?  You get sick. Your symptoms return.  The day we figured out that the Bisoprolol was too much? I walked into cardio rehab looking like death.  The med after that? I was puking in my office after the increase. 

Oh, did I mention the remote monitoring nurses? I had to weigh myself, take my blood pressure and pulse ox every day with a tablet that sent those vitals to the team. Once a week I would talk to the nurse as she reviewed those vitals and assessed any warning signs. Then, of course, there was my cardiac rehab team. I exercised under their watchful (and encouraging) eyes until the end of April. They also kept an eye on my weight, and I wore a heart monitor so they could watch to make sure I wasn't overdoing it. 

Cardiac rehab was nice, actually. I could see that I was getting stronger. I could see that I could be on the treadmill longer, or on the fancy bike with the scenic beaches and get to the end of that walk/bike. I was able to add weights by February and I was able to increase those numbers.  It was me, and several older men. They were crusty, refusing to change their diets, eat vegetables or exercise at home.  Of course, some had been through cardiac rehab before and didn't really see the rationale for adding vegetables into their diets.  

Not me. Tell me to exercise at home? Ok. Eat more veggies and fruit? Absolutely. The cardiac rehab staff are innately upbeat and kind. The other thing they do is transmit their observations to your doctors in real time. If I said "Oh, I was coughing a lot last night"....my doctors knew.  They watched me for lightheadedness and if my blood pressure was too low.  The cough from the Losartan not resolving? - the cardiac rehab staff emailed my doctor.  The first time I had that reaction to me medication?  My doctor knew right away.  I was ensconced in a team that was really dedicated to getting me back to a "normal" life. 

Broken Hearted

Thursday, July 28, 2022

 The reality of what has happened still catches me off guard. My habit of minimizing my trauma, my health, my life  is being broken...slowly.  Even then there are times when the enormity of what my body has been through in nine months can pull me up short. 

When my cardiologist took my hands in March and said "You've been through a lot Dawn. This is a really big deal and you are doing everything you need to - but this was a big deal". 

I burst into tears.  Of course, I was also having symptoms of heart failure again and was terrified that my heart was saying "fuck it" and counting down. 

When I got the bed in the hospital I was there for six days? seven days? It was a long time.  I had lots of blood taken, and lots of things pushed into my IV. The ward I was in was next to the ICU - so there was a lot of monitoring.  I am an easy patient. Compliant. I stretch out arms for blood pressure and blood draws. I helpfully point out where you are most likely to get a vein. I coach folks through the fact that my veins seem to push down and disappear when you are looking for them.  (as an aside, I never thought I'd be SO familiar with my veins and how to access them). I take the meds, all the meds. 

Mostly I sat in the quiet and just waited. Terrance would arrive and sit with me for hours, then go out and make it back for a couple more hours before visiting hours were over.  I listened to things and watched out the window. Mainly though, I just lay there.  

I was so tired. Tired from the illness but tired from everything. Like every educator during Covid, I was fucking exhausted. My students were falling apart and I was trying to patch them together and teach AND do all the other pointless bullshit that comes with the professor gig.  I was keeping an admin at arms length as they failed to listen AND piled on more bullshit. I was trying to be the program director for our major and protect the faculty from some of those ridiculous asks from admin.   

Where did I find myself? Laying in a hospital bed. Again. Third year in a row! Increasing severity with every visit!  Terrance did not mince words. "This job is killing you. We have to do something about this."

I didn't have the strength to argue, and what was there to argue about? It was true. The evidence was *literally*  laying here in a hospital bed.  He began to handle HR and the FMLA debacle mainly because I was just so sick and couldn't bear to deal with the University bullshit.

On a Monday, after my echocardiogram, I woke  from a little nap to see my nurse standing over me.  She was waiting for me to wake up.  She had a diagram in her hand.

Now, nurses are the ultimate poker faces. They do not ruffle, they do not have big reactions. While this nurse was not overtly panicking, she absolutely had an air of purpose.  In truth I was not surprised to see her. My nosy ass watched the echo intently and even my amateur eyes could see that it wasn't good.  The tech can't tell you anything and mine was excellent but I mean you'd have to be blind to see that my heart was just not really pumping blood. Anywhere.  The colors that indicate direction of the blood were just kind of hanging around. My heart looked weak. Tired. 

In that, we were both aligned. 

My nurse had a diagram in a booklet and I rolled over to give her my attention. It seemed that my heart was really, really not pumping.  Not the right ventricle, and the left ventricle was particularly stubbornly refusing to participate.  My ejection fraction was so low that she suspected I might get taken into surgery right now to have a defibrillator installed.  Like Right now. 

I did not have a surgery. Surgery is always decided on in terms of cost/benefit and there was a good chance that with time and medication and diet and exercise we could avoid a surgery. However, and this is the fucking annoying thing, it would take time. A lot of time.  I was young. There was no discernible reason that my heart should have decided to take a vacation.  Maybe it would correct itself.

My low ejection fractions seem to have set off a bit of a kerfuffle in my cardiology team ( yeah, I now have a team) about whether to release me or watch me for a few more days. They compromised and kept me an extra day and then released me. 

I'd been warned about post hospital recovery and I was sure I would be fine. I mean, come on. How hard can it be? No surgery or anything - just pills and diet changes. I had been released.

Broken Heart

Tuesday, June 28, 2022

 Even I can take the hint. Me, the person who never takes ANY fucking hint to let go, to subside, to be still, can take this hint. 

In October I felt really worn down. My office is on the third floor and by the time I got there I had to rest, panting. I assumed my cardio fitness was shit and I was probably getting fat. I am, after all 51, and my body continues to change as I morph into the bad ass crone I was meant to be. 

I was teaching face to face, as I had done all through the pandemic, and was ( and still am) scrupulous about masking. I still, for the record, mask in public spaces. I don't trust any of those motherfuckers. 

I planned on my COVID booster in early October because - well - I am around 18-25 year olds and they are invincible. I, however, am clearly NOT invincible. (See previous posts)

So there I am, panting up three flights of stairs.  The tightness around my torso began.  "hmmmm", Dawn thinks , "probably a bronchial infection which I should not have because I mask all the time and I better not have fucking Covid."

I go to my doctor. He says "pneumonia" and I agree. It does feel like pneumonia. I now cough and cough and the pressure is getting worse. I do the first round of antibiotics and nothing gets better. I go to the ER and they say "Yep, still pneumonia, take these other antibiotics". Week 2 of antibiotics commence.

"OK", I say. By now my breathing is bad. I use the inhaler. I drink the water. I call in to class because I can't breathe and I certainly won't be able to do my lecture performance for 2 hours at a time. I do some meetings via zoom and black out the screen when I cough so hard that I nearly fall off my chair.  My continual coughing keeps me awake all night.

We go back to the ER after week two.. It's a long night and a million tests are run on me.  Some tests are a little wobbly but nothing really indicative.  I must be fighting off the infection. More antibiotics are prescribed. Week 3 of antibiotics.

I've now been on a month of antibiotics. Nothing seems to be helping. I can no longer stand in the shower so I sit in steamy showers trying to break up whatever is in my lungs.  The inhalers do nothing.  I don't sleep because of the coughing.  My ability to walk has been curtailed from my bed to my bathroom and back. Even then, I have to rest leaning over the bed before I can climb back up because I am too tired to hoist myself back into bed. Terrance finds me in this position frequently because it helps my breathing. 

There is no working my job for me. I can't even care because I can't breathe.  I later find out that the students think I have Covid - really bad covid - and that no one is telling them. 

The night before Thanksgiving I wake up panting. My stomach and gut hurt all the time and I think it is because of the mammoth amount of antibiotics that are killing my gut flora. I try eating yogurt.

Emily is home because of the Thanksgiving holiday and she stares at me while I am propped up in bed.  I tell her that I woke up panting and she rats me out to her father immediately. He declares we are going back to the ER right now. "No", I plead, "They will tell me it is pneumonia again. There is nothing to be done."

He threatens to carry me down the stairs. I barter to eat a little Thanksgiving dinner before I go, knowing that there is no food to be had in the ER. I eat. I am so tired. I need to be helped into clothes and my family maneuvers me down the stairs and into the waiting car.

We arrive and I am ushered into a bed. Around us people with Covid are yelling at the nurses - denying, demanding. 

What feels like 2 gallons of blood is extracted. My veins are bruised from all the other visits so new sites must be  found. I can barely care, but I am compliant and kind to the nurses and techs.  Terrance hovers, fiercely.  I am hooked to an IV antibiotic to which I have a horrifying reaction. I feel like I am burning to death. I vomit, I cry, I keep asking how much longer till the bag is empty. I consider ripping the IV out to stop this horror. 

Terrance is frantic, putting cold cloths on my neck as I plead with him to make this stop.  "I can't do this, I can't do this", I cry.  When the medicine ends, the pain stops.  I can open my eyes and speak again. "That was bad", I say. He is shaken and quiet.  "I've never seen you like that. Even in labor", he says.

I lay on my side.  Laying on my side helped  the pressure in my torso, but makes me cough. Every decision is weighed with the discomfort. We sit, waiting. 

I am taken for more procedures - MRI's with contrast. The dye always feels funny - the hot tingle before it subsides. I return to the room. I wait.  Emily has arrived and sits next to me. 

My doctor eventually arrives. "This is congestive heart failure", he announces. Emily bursts into tears. Terrance shushes her - he is intently listening.  "You are going to be in the hospital for while", the doctor says. 

New medications are pushed into the IV. Saline is immediately discontinued and diuretics are pushed.  The  swelling that I'd thought was dead gut bacteria is, in fact, fluid. LOTS of fluid. The pressure and fluid in my lungs? Not pneumonia , it seems, but fluid building up. I go back in for another MRI. The tech says "This is the last one you can have for 24 hours. Remind them if they try to send you for another one."

The squeezey things are put on my legs to try to move the fluid. I pee constantly.  

There are no beds free in the hospital due to the Covid patients.  Terrance goes home to get me my favorite pillow and some other things.  I sleep in the ER until a bed is freed 28 hours later. 



I turned 50 in April. We'd planned a month long sojourn through Italy, starting in Rome and then winding down the Amalfi coast.  We planned that trip for over a year.

Then Covid.  Which, you know. Closed Italy, then closed everywhere. 

But this post isn't about Covid. That is an eternal nightmare that makes me incredibly filled with rage at stupidity and toxic individualism.  It's not about the 3.5 months that I literally did not leave my house because my never ending pancreatitis, recent past kidney failure and diabetes painted a giant "Easy to kill" sign on my back.  It's not even about the depression that hit me like a wholly unexpected wave and pulled my feet out from under me, forming a rip tide that I had trouble shaking.

In May I had a surgery to remove my gall bladder which was determined to have caused ten months of pancreatitis. It was a weird thing having a surgery during a pandemic - especially one that was scheduled two days after my visit with the surgeon. (It was a very bad gall bladder.  Quite.) Of course by that time I'd had three Covid tests since pancreatitis mimics Covid. The surgery seemed less daunting than having my brain swabbed again. 

 No one was allowed to go in with me. I woke up to very kind nurses who ( apparently) were keeping Terrance up to date via phone calls.  I lingered in recovery until about 4:30 that afternoon when Terrance was called to meet me at the front door. I walked out to get in the car, blessing the nurses who had managed the hell out of my pain and kept the ice cold cranberry juice flowing.  (Big props to the nurses at Mayo Health)

I slowly recovered - which took longer than I expected. Then again the stone was 5 FREAKING CENTIMETERS. Having your surgeon in front of you super excited as you emerge from the fog of general anesthesia to exclaim about the size of your gall stone is a special experience. My mom later said "Yeah, surgeons rarely get excited. It must have been a really large stone - larger than he's seen."

At the beginning of June, just as I was feeling better and didn't have to clutch a pillow to my mid section every time I inhaled too deeply,  I was walking back to the car from dropping off some library books when I stumbled. And fell. And heard a deeply worrisome POP! My first thought was "Please Jesus, don't let my still not fully healed incisions to have ripped." They did not.  My next thought was "My ankle is not in the place it should be on my body." It was, in fact, not. I reached down and with grit I did not know I possessed, I popped my ankle back into it's joint.  I continued to lay on the gravel for some time, causing the librarians to run out of the building and try to convince me to have someone get me.

No. I insisted, I would drive home. It was only about a quarter of a mile and I could do it. 

I did glance down at my ankle on that short drive home and began to mentally prepare for the news that it was broken. It looked - well - like nothing I'd ever seen before.  Terrance took one look and said "That's broken." Once at the ER, a very kind doctor unwrapped my ankle and said "Oh! well, I suppose you could have sprained it - but something that looks like that is usually broken."

It was not broken was badly dislocated and incredibly swollen. The ER called in more painkillers which made the pharmacist intently question Terrance as to my obvious budding opioid addiction. Two times in a MONTH. Was he sure I didn't hurt myself on purpose to get more drugs?

About 4 weeks after the surgery, I got a call from my GI doctor. Now, friends, at this point I have SO many doctors who've been pulled into my case(s) that I can forget who does what. I thought they were calling to see if the pancreatitis symptoms were better.  Nope. I was 50. I had some long term GI issues. It was time for my colonoscopy.  I actually said "You've got to be fucking kidding me. "

Nope, they were not fucking kidding me. They wanted me in ASAP. I was on the radar.  Fine. Whatever. Why not?  They were going to sedate me, right? Ok. Sure.  

I went in for that little exercise in willpower after drinking that low key semen flavored gallon. Lucky for me, I ALWAYS have diarrhea so there was less to clear out of my intestinal tract.  Oh, and if you mix margarita mix into the solution it will mask the taste, at least a little.  And if you are diabetic you are free to suck on real sugar candy to keep your blood glucose from diving off of a cliff during your day of fasting. 

The procedure itself was nothing. I was given meds, I woke up and left the hospital. I was warned that I had some polyps and they were going to be tested. If they saw anything untoward, I would be back to do this in 5 years instead of 10.  I

Last week, I got tagged for my overdue mammogram.


This is where I seem to have stopped writing. Who knows why - Cat? Child? Spouse? All are feasible explanations.  But now I hit publish on this saga of fiascos. For I will be publishing the NEXT saga of the  fiasco

We in ECE are not your cannon fodder

Friday, March 20, 2020

The inevitable has happened. The world economy has ground to a halt and the nation casts their eyes to whom? Child Care providers.

"Work! Keep Working! We need you to work so we can give you our children so we can work!"

I ask

"Where were you all when I had no health insurance? When I survived on 13,000 a year? Where were you when I would ask for a living wage to be told that I did unskilled labor that anyone could do?

Where were you when I got no sick time, and no vacation? When I came in sick with bronchitis or drove through dangerous conditions to get to my job so I could care for YOUR children?"

"But we need you! You are an essential service"

I ask

"Really? Because most of my work force lives in poverty. Many of us make minimum wage. Most make no more than $10 per hour if we are lucky. We qualify for SNAP benefits. We use food pantries. You've never paid me like I was an essential service. In fact you made me feel guilty for saying that I needed more money. You told me that I was greedy, that I wasn't in this for the money."

"But we can't work if you don't care for our kids! You can't be selfish! "

I pause.
"I am not selfish. However, you don't get to abuse me for decades and then turn around, point at me, and demand that I accommodate you."

"But who will care for those sick and dying?"

I exhale. 

"Who will care for me? Where is my protective gear? Why is my health less valuable?

When you pass new emergency laws raising adult to child ratios so I can take more children into my already crowded classrooms how does that help? Who does that help? Me? 

Are you unaware that children spread disease faster than any other age group? Have you not spent time with a group of eighteen 4-year-olds?  or eight infants? That crowding more children into those classrooms guarantee that more disease will spread?

What happens to me and my colleagues when we (inevitably) get sick? Who cares for MY children?"

I start to close my door. You jam your foot into it.

"You must work! We can talk about what you deserve later. You must work now"

I push the door close as I say:

"My profession and our bodies are not your cannon fodder. I told you this day would come and we told you, endlessly, that your economy runs off of our labor. You ignored me.

You stepped on me and my colleagues over and over and over.  People wrung their hands and said "Yes, you deserve so much more", but more never came. Our wages and benefits never increased. Our facilities never got better. We still have to spend our own money on paper, and paint, and glue, and kleenex, and snacks to feed these children that we love. We still have our own children to feed. For many of us we can not afford to send our children to the centers in which we work.

Your promises are empty.  You will forget about us as soon as this crisis passes. If you wanted to change this you could, but you are too busy telling us that it is all too expensive for you to do anything.

Care for your own children. We hear it is easy unskilled work not worth a living wage. Not worth health insurance. Not worth getting an education. "

I lock my door.

I am doing the best that I can

Wednesday, January 01, 2020

I wrote the below in November.  Egad, did I ever feel rotten. My lipase has started to come down and I am due for more tests in the next couple of weeks here in January 2020.  My body finally succumbed to the onslaught of insulin with the addition of an insulin sensitizer.  I am seeing fasting glucose numbers of 90 in the morning. 

It isn't pancreatic cancer, not that we can see from any of the million scans, blood draws or ultrasounds.  That, I think, was the first fear. Was my pancreas shutting down/eating itself because of a tumor or malignancy? That doesn't seem to be the problem but we still don't know just why all of this is happening. The tests continue.

As I head into my fifth decade, I have become acutely aware of my fragility. I know it sounds cliched, but I never considered aging. Not like this.  I knew, of course, that I was aging but the failure of my body was truly unexpected. My perimenopausal body bucks and kicks against it's confines, shocked at the ways in which I used to be effortlessly strong or renewable. 

I have spent the last two weeks of December 2019 ensconced in bed, reading and recharging.  It is almost time to begin the march to the beginning of the Spring semester and I am nearly ready.  I face this new decade with more humility than I have ever felt in my entire life. 

The beauty of youth is the sense that you are infallible, that you know everything and that the older adults in your life simply do not know of what they speak. That is a state of grace that allows youth to do amazing things, outside of what is considered possible.

The strange beauty of looking at 50 is that I am deeply aware that I know nothing and that I am crushingly mortal. 

I am doing the best that I can, and that is more than enough.


It's been a rough year, friends.

The kidney failure knocked me off of my axis for quite a while.  My summer was strange and I found I couldn't work as hard or as long in the garden as I had in previous summers.  I would get really tired after only two hours. I know - two hours! But that was far less than in summer past.

I was coping well with everything and have found myself to be more easy going about many things.  Some of that is age, I think. I am 49. I have tenure. My kid is in year 3 of college.  I have a cat who loves me.

Other things, though.

My knee hurts at odd times. It occasionally crosses my mind that heels aren't a super idea, but I push that thought WAY down deep since there is no way that I am not wearing the heels. Seriously. You will find my cold, dead broken ankled body before I give up the heels.

I was put on half the dosage of Metformin after the kidney fiasco. We supplemented that with a different med that was doing an OK job at controlling my blood sugar. I felt ...fine, I guess. Always really, really thirsty but I assumed that it was part of my kidney recovery.

In August, we spent some time in Cape Cod. We try to do a couple of weeks vacation before we launch Emily back to college.  Early in the week, I felt just awful. My stomach was in agony. I wrote it off to eating as if I was on vacation - you know minimal vegetables, lots of sugar and fried things. I dispatched Terrance for some Zantac ( since Prilosec is now on the "apparently can fuck a kidney" list).

Oof. It was bad. We would try for little trips, but I would have to cut us short because of the discomfort I was having.  We did make it through the Edward Gorey House, which made me happy.

As I am a trooper, I just take medication  and just suck it up.

This, gentle readers, is a mistake we can all see, right?  Dawn's body is flagging her down. Dawn says "It must be a virus" and keeps going. Dawn's body eventually falls apart.

Now, in my defense I now know kidney failure. I know the signs and the symptoms. There are NO signs of kidney failure. No pain. No ibuprofen use (sob). I am urinating just fine and as copiously as always.  Ergo, it must be a virus.

We drop Em off to college. We go home. I get ready to start the semester.  Boy, my stomach isn't feeling better. Still hurting all the time.  Like ALL the time.

By week three of the semester, I finally acquiesce and make an appointment to see my doctor.  The day before the appointment, I felt a little better and thought "Hmm, I should just cancel. It WAS a virus."

The morning of the visit, I was vomiting. And I was dizzy.  These are the exact things  I ignored before the kidney failure.  "Shit.", I think.

I get to the office.  My patient doctor is like "What the actual fuck, Dawn?" (not her exact words) and begins to order tests. I am to have blood taken and sit there in case my creatinine is rising and I have to be hospitalized again. "Oh shit," I think some more.  Now I am going to have to tell Terrance.

I text Terrance: "Have to have some blood tests. Will know more soon!" I resist throwing in smiling emoticons, hoping my exclamation point = careless optimism

The phone rings. It's Terrance. He is on his way. I attempt to protest. He ignores me.

We sit for an hour, waiting. As we sit there, a tech enters the room and states:  "I am supposed to start an IV on someone in this room."  I am confused and scared. "Are you?", I stammer.  "Are you sure?"

She leaves and I start to cry. "I was doing everything right! No ibuprofen. I can't drink any more water! There was no kidney pain at all!"

Terrance pats my arm.

My doctor comes in. My creatinine is actually great! I stare at her. I explain about the tech.  She laughs. No, that was a mistake, not for me.

BUT my lipase is through the roof!  What is happening with my lipase!

It seems that I had an acute pancreatitis attack in August. You know, no big. I am, it seems, continuing to have a lesser pancreatitis attack.

Do I fit the profile for a person to have pancreatitis? No, not at all!

Thus began the mystery of why Dawn's pancreas has decided to eat itself! As part of this mystery, we have had to take me off of all my diabetes medications, then retry things, then re-test my blood to see what is happening in Dysfunctional Pancreas Land. ( don't vacation there)

I've made friends with the lab techs since I see them every week.  I give informed and specific notes on where the best vein to hit might be, since I have fussy veins and I can now predict where they will hit best. I try to drink a full bottle of water before a blood draw because it plumps my stubborn veins up a bit more.

By October, this mystery had not abated. In fact, it had gotten weirder and more puzzling.  I am sent to an endocrinologist.  We go off the other diabetes agents, as they may irritate the pancreas. I am to try a tiny bit of Metformin for a week. Then another blood draw.

Now, my blood glucose levels have been atrocious since August. For reference, a diabetic should have numbers of about 180 at their 2 hour post meal test.  You should wake up and see a number at or under a 120 fasting blood glucose.  HAHAHHAHHHAHAAHA!

Waking up in the morning and having a fasting BS of 200 starts your day off on a shitty trajectory.  It means that anything I eat is going to send me spiraling up into the 300's.  When I am under-medicated, my glucose doesn't fall. I will get to 297 after dinner and then STAY there for 5 or 6 hours.  Last night, for instance,  when I ate at 5 p.m. I was 237 at 9 p.m. By 11:45, as I was getting ready to go to bed I was 197. 

You know that sleepy foggy feeling you can get when you have had a carb heavy meal? Yeah, I feel like that all the time. Headache. Foggy. Forgetful. Cranky.

I was placed on insulin when the last Lipase came back too high. It's doing nothing.  My glucose has gotten far worse while on the insulin.  As a Type 2 diabetic, my primary problem is insulin resistance. I make ( or have made ) enough insulin...my body just ignores it.  Metformin should not have caused the lipase spike. It only works on the liver, so the pancreas should be unaffected.


Two cuter kidneys

Wednesday, June 19, 2019

As I sat in my hospital room, lights low, I filtered this information - but slowly. Terrance, who had gone home for the evening, would need telling and I needed to do that gently.  He gets deeply rattled when I am truly sick, for I am never truly sick.  Even when I was diagnosed with diabetes I soldiered on, diligently taking on the task of glucose monitors and medications and tons more doctor visits.  When a mammogram came back sketchy, I soldiered on, soothing him with the statistics of this being a scare and not a true problem.

Later, a good friend described the moment when he appeared at the desk of our Admin Assistant to share that I was being admitted to the hospital and I would not be back to teach classes for the foreseeable future.

"I've never seen a human look like that.", she said.

I've just been told that I am in very bad shape - far worse than I thought and well beyond my optimistic assessment that I would be out in a day and we would all laugh because I'd just been dehydrated and I could go back to teaching by Thursday.

Terrance called a bit later and I braced myself for his barrage of questions. When he is scared or upset he can revert to his lawyer training, peppering you with a barrage of questions that you can't quite answer.

"Hi Hon. The nephrologist was just here." I pause. We both know that the nephrologist should not have been there at 9 p.m.

"It seems that I am in acute renal failure. We don't know why. We just have to wait and see what the fluids will do and if my creatinine comes down."

His questions come fast - does this mean dialysis? When will we know for sure? Why did this happen?

I don't know, I don't know, I don't know.

"Don't tell Emily yet. I don't want to freak her out. She is in the middle of final exams and she is already freaked out about my being in the hospital."

This, readers, is an understatement. My daughter is positively violet with fear and worry. I get texts every 5 minutes begging for updates. I refuse video chats because if she sees me in the hospital bed, hooked to an aggressively beeping and humming IV, she is going to absolutely lose her shit. She is in New Hampshire. She will be home in a week. She needs to focus on her final exams.

"This is my worst fear", she says later. "Like, Mom. I have had nightmares about this - not being able to get to you and you are dying and I can't get there."

I soothe her too.  I am fine. I am being taken care of, there is nothing she could do even if she was here. I am in the best place for me to be in this situation. Focus on her final exams. Everything is fine.
This is the mantra of most mothers. Things are all right. Nothing is unsolvable. Our unflappability is an anchor for our children. We are their herd leader. Our fear becomes their fear and they do not need to fear.

I am not fine, of course. I am shaken.  On the day I am turning 49, I was unknowingly beginning to die - quietly and slowly but the path was actively being constructed.  As it was my first real brush with my mortality it is deeply disquieting. I mean, sure, we all consider our mortality, but it is abstract even when it encompasses the deaths of family members or friends or acquaintances.  We all hope for deaths that are predictable coming when we feel as if we have had enough time to be on the earth to accomplish everything we had hoped to accomplish.  We want a clean death, pain free and not messy. A sneaky death that you don't see coming? No.  I have been snuck up on by my body and I do not like it.

I sleep fitfully. Hospitals are terrible places to sleep and even my sleeping medication is not keeping me asleep.  Not to mention that the VAST amounts of saline being pumped through my system demands that I empty my bladder every 20 minutes.  When I sleep for a little over an hour, I am amazed to see that I urinate 20 OUNCES of fluid. Nearly a whole water bottle full of urine. I had no idea my bladder was so robust. In the end, I have about 7 gallons of saline moved through my body.

By the morning, my creatinine is dropping. Slowly but surely. There is a smidge of movement in the right direction. The doctors look happier. I ask - for the last time - when I can go home.  They look at me sternly and make no promises.  It is clear that I need to accept that I am in here for a while.

I become accustomed to the routine - unhooking the IV, wheeling to the bathroom, coming back, replugging the IV and getting back in bed, careful to not tangle the lines or displace the needle. I take a shower, an extensive plastic sleeve covering the IV port, and trying to wash with one hand. It wasn't awesome, but it helped.  Visitors come and stay for awhile. I am deeply grateful for the distraction. I read, I manage panicked freshman who are registering from afar. I plan for how my classes are going to finish their last week and a half without me, how presentations are going to get done and how good enough is fine.

The following morning my nurse is pleased. "Have they told you your numbers?" No, I hadn't seen anyone yet that morning and I had actually slept in a bit. My creatinine numbers are continuing to decrease nicely.  It seems that the massive push of saline into my blood had woken my kidneys up and they were operating again. That meant no biopsy. No more white blood cells in my urine.  I am eating some small meals.

A final day, it is decided, to make sure my numbers continue to decrease and hold. The IV is slowed and then taken out. I am wildly grateful to have the use of both arms again. Later, the bruises will bloom up and down both arms, flowers of purple and blue planted in haste.

I cry again as I am given advance directive paperwork to complete.  These things are concrete and final. I am being asked to not only consider my death, but to plan in advance for the eventuality.  I am controlled until the question about "Is there something you want to say to someone in the even you are unable to speak?"  I sob. SOB.

Yes. Yes. Yes, but it can not be contained on this paper. I can not commit to this question. It is too big, too amorphous. It is beyond my human capacity to distill into words.  I leave that section blank.

The rest I read aloud to Terrance, getting his consent to the things I ask him to consider.  How I want to die, what parameters I can control and his possible role in facilitating those wishes is a conversation we have never seriously had in the course of our relationship. While necessary, it is unnerving for both of us.

When I am released from the hospital, I am unsteady. While now deemed physically OK, I am more emotionally fragile than I knew.  I have a panic attack that evening, convinced that my kidneys are shutting down again and I won't know and die.  Simultaneously, I know this is a reaction that is in my mind and not my body.

It's been a bit over a month now. I am doing well. The medications that could have caused this have been removed from rotation. No ibuprofen or naproxen ever again- Pour one out for my beloved Liqui-gels. I mourn them. Metformin was taken away, then reintroduced at a much smaller dose.  No more Prilosec or its cousins.  My blood sugars soar and we have to do a different medication to eventually get it under control. We do another creatinine test because we always do more creatinine tests.  I am .88. Perfect kidney numbers.

I joked that I now know what kidney failure feels like. Terrance does not find this funny. He monitors me closely and when I don't feel well, he asks a litany of questions to assess if this is a passing thing or the prelude to something more serious.  I drink water, so much water.  I am still a little slower than I feel I should be at this stage in the summer. I get a bit more tired. I try to be more gentle with myself when I don't get as much done as I'd hoped, reminding myself that I was very sick even if I don't admit it. I travel alone, for the first time post hospital, and find myself in a hotel room worried that I am feeling pain in my kidneys and terrified that I will be away from home and go back into kidney failure.  There is a bit of post traumatic stress that, while disconcerting, is also perfectly normal.

I wish I had a grand pronouncement, but I don't.  Listen to your bodies, my friends.  We are more fragile than we realize, especially as we move solidly into middle age with all of it's accompanying insults, aches and pains. (Ask me about my rando aching knee!) Make sure you are peeing. Drink water. Don't take too much ibuprofen, they aren't kidding about the kidney thing.

Take care of yourselves. I would miss you if you were gone.

A cute kidney

Saturday, May 11, 2019

On Monday, April 29th, I turned 49 years old.

On Tuesday April 30th, I was admitted to the hospital with acute renal failure.

They didn't know that at first, of course.  The ER doctor, though I am sure well meaning, was fairly dismissive of my description of my symptoms.  I was trying to explain that my dizziness had become so pronounced that I could move only if I stared down at my feet and never looked up. I explained that my appetite was gone, and I was only eating one very small meal a day. Oatmeal. I didn't even have a cupcake for my birthday, because I felt so bad.

I explained that on Monday I'd tried to teach class, but had to sit down because of the dizziness. That quickly became dry heaving, then full body sweating leading to my releasing class early because I was not doing well.  The poor startled and concerned students were rather beside themselves.

I described that on Saturday I had dry heaved and vomited a little in the parking lot at Walmart. I did this while a man in a white truck watched me, and Terrance looked on with concern.

Yes, of course I was drinking fluids. That's all I could do, really. Green Tea and Water. No, I hadn't been sleeping either but who can tell with a 49 year old body. Sometimes you just wake up and stay awake.

The ER doctor told me that I could control the dizziness with over the counter medications! Why he too suffered from Vertigo - Right now, even!

Could it be ear infections, I asked? Maybe some kind of weird ear infection that was making me so dizzy? Grudgingly, he looked. Nope, no ear infections.

He left me alone on the ER bed, feeling foolish and overreactive.  Nurses came in. They took more vitals, someone took blood.  When it was determined that I was dehydrated, a kind man came and got an IV started. He was very kind and patient, as my veins were just about invisible and he had to work hard to find any place to get this started. After he was successful I asked, "Can you get my husband? He's in the waiting room."

Terrance arrived. He sat down and asked me what the doctor had said. I shared that he thought I must be dehydrated and there were no ear infections.

Now, what I am not explaining here is my utter insistence that I am fine.  This is a little virus. Maybe a small bacterial infection.

I am *always* like this. ALWAYS.  Everything is no big deal.  Earlier this spring right before class was starting, I ran to the washroom and vomited profusely. I hadn't realized that the door had kicked itself open, meaning that ALL of my students got to hear me vomiting profusely. In fact, the whole first floor got to listen to me puking.

As I returned to class, I faced an entire room of startled students who just put together that the person they had just listened to was, in fact, their professor. 

Readers, I taught the class. For the full 2 hours.

For me to say "I think I need to go to Urgent Care" is the white flag of defeat in Dawn world.

A nurse came in and asked me to take out my earrings as they wanted to do a MRI to make sure I wasn't having some kind of tumor or stroke issue.  I lay there feeling utterly ridiculous. I was just dizzy, terribly dizzy.  And nauseated.

They wheeled me back into the room. I lay there, eyes closed.  Terrance stared at the walls.

Here is where the dramatic moment of hospital shows happened. The doctor whips open the curtain and exclaims that my blood tests are showing something very wrong and they are admitting me right now.  People appear. More things are done. Terrance is handed my purse and told to go get things from home because I am being wheeled upstairs now.

Truthfully, I am now feeling guilty because this is all a bit much. For some dizziness?  I've had two liters of saline pushed into my body in such rapid succession that when they hook up the third, I am confused because I thought we had just started the 2nd one. I am transferred into a hospital bed. I am covered in warmed blankets.  I lay there and begin calculating how much this is going to cost us and how soon I can get out of there because we have a child in college and I can not afford a 20K hospital bill.

Sidenote: Thanks, American medical and political systems for that extra tidbit of stress.  As if I am taking a spa break, or a fancy vacation,  I worry about the cost of the bill for my portion of the hospital admission.  In fact, I begin to cry in the hospital because I am thinking of how much this is going to cost.  I apologize to my husband when he arrives because this is going to cost too much.

The first doctor arrives.  The next bag of saline is being hooked up and pushed through my body.  My doctor says they aren't quite sure what is happening yet.  Something is going on with my kidneys but they don't know what. They are going to keep pushing saline. A nephrologist has been called.

Terrance arrives with a backpack full of things. We sit in silence as I cry about the cost and he reassures me. The IV pump hums aggressively.  After about 7 hours of continuous IV fluids, my appetite returns in the smallest way.  With the nausea controlled with medication, I might want to eat a little.  I want a salad. I want a little hamburger. Maybe even a few fries.  Terrance does what he does best - he manages food for me.

The nurse smiles when she sees me eating, even if it isn't much.  It's good.  I still can't stand without getting dizzy, but I am peeing lots now. My indignity is enhanced by the fact that I have to pee into the "hat", a large plastic container that measures my urine.

I am wildly grateful that I went with the boy shorts underwear instead of the usual thong given my hospital gown and the frequency with which I am now peeing.

I am still optimistic that this is just all an overreaction and I am fine. Terrance goes home for the night.

The nephrologist arrives at 9 p.m.  I am laying in bed actually trying to grade papers and respond to  emails from panicked freshman asking about registration. ( See: Dawn's inability to admit she is ill, above)

This startles me for a couple of reasons. First, I was told that he wouldn't see me until tomorrow since he had left for the day. Second, he seems *very* serious.

He is kind. He is clear. He does not talk down to me. He takes a history, asking me about medications, health, any changes I had observed in my general well being.  He then starts talking me through what they suspect has happened.

My kidney's, he explains, had simply stopped working. When I arrived at the Urgent Care that morning, I was in acute renal failure. I had lost 95% of my kidney functions by the time I was admitted. A few more hours of waiting and I would have been in the ICU.  He explained that they weren't sure if this was reversible yet and that they would need to wait and see my numbers in the morning. The ultrasound of my kidneys and bladder showed no tumors or obvious blockages, so it could be an infection inside the kidney, or a combination of other factors.  A biopsy may be needed.

After he left I sat in my very dim room and considered my fragility. This was the moment that I got scared.

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