Homeward Bound

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

Updates: 

#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.  

Kintsugi

 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.