August 9th, 2021
A white woman with dirty blonde/light brown hair looks at the camera.

Stuck in a bed for almost a year now, 10 full months of illness and well, I’m over it. I’m ready to be back to my normal life. Running around CB, writing about the town and town government for the paper. Taking pictures of events and people and every little thing I see.

For a part of my hospitalization I was so ill that I didn’t take care of myself. I didn’t keep up with my skin routine or anything other than watching tv on my Chromebook.

When my eczema was screaming at me I decided I had to go back to taking care of myself. Tony brought me my skin things, Cetaphil to wash my skin, a generic spinny brush to exfoliate, my eye cream, the L’oreal face serum and night moisturizer I use.

He brings me a basin of warm water and I take my time, wetting my skin with a cloth, rubbing my Cetaphil cleanser in, then rinsing it off, gently. Using the brush a couple times a week to make sure the dead skin cells are gone.

I dry my face, then rub my eye cream in, lightly with a soft touch as I was always told that tugging on your eye skin would hurt it.

I pump two pumps of Revitalift serum on my fingers and rub that all over my face, it goes a long way and covers even my big face with ease.

At night the night moisturizer goes on over it, another L’oreal product aimed at middle-aged women like me. I get compliments from my nurses on my skin on a regular basis, told I don’t look 46.

I always tell them it’s because I don’t have children, when really, I always looked much older than I was until my mid-30s then it seems I have slowed down in the aging process.

I don’t study my skin, but I glance at it to make sure I have rubbed all the product in and that is my entire skincare routine.

Keeping it up has helped with my spirits. I feel better and stronger when my skin is taken care of. It’s one of the few things that help me feel like myself in a situation that is beyond anything I thought would ever happen to me.



August 5th, 2021

I miss food.

I have not had a drop of food since election night 2020. Yes, since November of 2020, no food has passed my lips.

A fluorescent yellow bag of liquid drips into my body over 16 hours providing me with nutrients I need to live. The couple of times I have been without it due to one mishap or another I have felt worse the next day.

Most of the time I am not physically hungry. Being fed Total Parental Nutrition(TPN) takes away the hunger. At least the physical hunger.

Mentally, I am starving. You do not realize how much food plays into every day of your life until it is taken away.

To feed my brain, I watch cooking shows, or Youtube food shows where someone is eating at restaurants to review. It’s like a bit of torture that helps a bit.

Or I read menus of restaurants and dream of what I would eat were I allowed to eat. I even know the foods I want when, and if, my body adjusts to allow me to eat again.

I want two hard boiled eggs, a slice of buttered toast, preferably rye, and grits with butter and salt. I want an Impossible Whopper with french fries. On the side I want mayonnaise and ketchup mixed together to dip my fries in. I want cheese pizza for dinner.

I really want a large bowl of broccoli with butter and salt, but it may be a long time, if ever before I can eat broccoli again.

I need to sit down at a restaurant with my husband and order too much food because we haven’t been to a restaurant since before the pandemic. I want to go out to eat with friends and share drinks and laughter and talk to them.

My mind wants food so badly, that I dream of it at times. I dream of Ethiopian food, picked up with injera and spooned into my mouth. It is my favorite non American food and I adore the whole ritual of sharing with one another and eating with your fingers.

I have lost some weight while on TPN. I am likely to lose more following my surgery. We don’t know how much of my intestines will be left so my ability to eat depends on that.

It’s funny, I changed my diet to vegetarian, plant based, lots of vegetables, no meat at all, only whole grains, and I ended up with this. It’s like when I quit smoking and two years later was diagnosed with renal cell cancer.

It’s bullshit. It is as if the harder I try to care for myself the worst off I end up. I am just hoping that in the end, my body is healthy, I can eat the food I enjoy now, which focuses on vegetables. as someone who grew up extremely picky who ate a very limited number of foods I am hoping I don’t end up forced to life like that.

Let’s hope I don’t end up with a body that won’t digest whole foods.

Just a little while ago my lovely nurse hooked me back up to the yellow bag of food for the night. I can her the IV pump pushing it into my veins and through my body.

It is keeping me alive and helping to heal my intestines so we continue on in hopes of a return to normalcy.

Me, Tony, and our little house in CB. Oh, but my home is something for another day.

Thank you for reading my rambling thoughts.


To Cheer

August 3rd, 2021
Yellow roses are surrounded by yellow and white daisies

Tony sent me a lovely flower arrangement on Monday. Yellow roses surrounded by daisies. Oh, daisies. My favorite flower in the world are all manners of daisies.

From the pop art daisies that grace my right arm in pinks and blues and oranges to the white simple ones that are what most people think of when they see them.

Our wedding included daisies even though it was in October and out of season, solely because I required them to be a part of the day. The small arrangements of silk flowers still decorate our home. (we used silk because of allergies in the wedding party.)

Back to the daisies sitting here in front of me. Tony sent them to me to help keep my spirits up. He is of the mindset that the happier I am, the more mentally strong I am, the better the outcome of my surgery will be.

I agree. I went into the surgeries in the fall, not knowing what would happen, and often unaware as I was in and out of it.

Five surgeries to remove the abscess that had walled off my intestines, to clean out my body, to make two ostomy/fistula sites to help keep my body functioning.

I was pretty damn sick. According to my surgeon, I have the most complex case he’s ever seen, but he has assured me he can take the pieces of my intestines and put them back together.

Even though all my doctors were sure that I wouldn’t make it to this point, he know is confident he can fix me.

My spirit and mind fought to stay here through all of the surgeries and nights in the ICU. Nights were much of what I remember is being turned on these yellow wedges to keep my body from developing pressure wounds.

I much prefer the yellow of my daisies to the yellow of those damned position wedges. My hope is that being more alert and oriented going into this surgery will help me to deal with the aftermath better.

Much of November and December is lost to me. I spent most of it in the ICU, Tony standing beside me for the 12 hours a day of visitation, holding my hands, rubbing my head, and rooting me on to survive.

There is one night I remember, that I told him to go away, it was time for me to go, but he had to leave first. He refused and held me all the tighter to this world.

When it would get to the point that it was obvious that I wanted to not be touched, he would sit there and just watch me, his sheer will pulling for me to survive.

There is no doubt in my mind that his love and strength are the reason I am still here and facing the toughest battle of my life. And, I know he’ll be here beside me, holding my hand, rubbing my head and my feet, pulling the toughness out of me so I will continue to fight.

Physical Therapy today was tough. I was in pain already and cranky because of being pushed towards going into a nursing home. they want me to go to one until my surgery, but, I’ll save tht whole saga for tomorrow.

Thank you for reading and your comments, love and prayers.



August 2nd, 2021

There is a file on my desktop named “Susan’s Funeral.” It stands alone away from my other files as if I don’t want to infect my other files with it.

It is short, only a page long, with instructions on what I want done if the worst should happen following this surgery.

I have discussed my wishes with Tony before but I do not want to leave him to remember those things while dealing with the loss.

On top of that, I have been trying to write him a letter, a note, a tome, even a paragraph of how much he means to me. I want him to have that should the other file be needed.

I want him to know how much I love him, and have loved him, over the past 25 years of our lives.

Even when we were in a bad patch, and all marriages have them, my love for him has always been there.

I cannot get the words to the page though. The blank OpenOffice file taunts me as I open it again and again to try.

How do you even address someone in a letter like that? I cannot find the words to even start.

I don’t know, but before my doctor opens me up to try and put my insides back together, I will have to figure it out.


Hair and Consequences

August 1st, 2021

Earlier this year, I went bald. Not on purpose or request, but out of nowhere, my hair began to fall out in clumps.

I started out with a mohawk in October of 2020. Just a month prior to the beginning of all of this, I had finally gotten the nerve to do it.

In the saloon chair, the sylist shaved down the sides of my head, leaving the middle of my hair, then bright pink, to drape over the left side of my head. 45 years old and I had thought about doing this for at least two decades.

I started dyeing my hair a multitude of colors in my early 30s. When I was a teenager, I had dyed it a color or two, but it was much bigger deal back then and my parents, particulalry Mom, did not like it, so I left it be.

Time moved on, I dyed my hair natural colors, just not my natural color, for years, until I got bored and started the fuschia run.

Then purple, burgundy, blue (which did not suit me and lasted only a short time,) and any other color imaginable.

Until this time in the hospital. Clumps of pink and blonde hair were falling into my hands, landing on my pillow and no one knew why. Finally it was all gone other than one small patch at the front.

I cried. I’m not ashamed to say that I was saddened by the loss of my hair. As if the fact that I was bedbound, unable to even get up to urinate wasn’t bad enough, now I was bald.

My doctors had no clue, the nurses didn’t either, but they were amazing through it all. The nurses at hospital number two were, overall, the best nurses I have ever had. They held my hand through tears and panic attacks, helped take care of me in the most gentle of manner.

Over the seven months there, several of them became friends. I miss them here in hospital number one. The nurses here just don’t have the same friendliness to them. Everything is much more regimented and nowhere near the comfort of number one.

The story of the nurses are for another day though. There I was bald as can be, no idea why, and scared it was something serious causing it.

Tony found some research showing it was likely stress induced which helped calm my mind. Thoughts of other serious illness had danced through there, what if I had cancer again, or my body was shutting down from my intestines not working properly.

He would rub my bald head and tell me I was beautiful.

Just as quickly as it went though, it came back. Tony rubbed my head one morning and felt the peach fuzz of the new start of my hair.

Nothing had changed, no meds, nothing with my TPN, I was just growing hair again.

Today, you can’t tell that I was bald just months ago. I have hair and it is my natural color. A light brown with grey peeking out. Just this evening I mentioned to Tony that if I wanted to go back to my natural color, now would be the time.

His response, “We’re going to get you home and dye it bright pink!” He’s right. I’m going to make it through all of this and we’re going to go home, together, and dye my hair pink.

Almost 10 months into this journey, we are looking toward our new normal following my surgery. Strong, proud, tough old broad style, here, I’m going to make it through all this and be Suzy again.