Chronic Illness

You Get My Best

person wearing black low top sneakers and black jeans
Photo by Nicholas Githiri on Pexels.com

If you see me on the street, you get my best smile, my best hello.

If you ask me how I am, you get ‘I’m good’.

When I am good, you won’t pity me or avoid me.

I want you to know the truth.

I want to spend time with you, but I take naps everyday.

I want to have fun, but I have to function tomorrow.

I want to make plans, but I just can’t.

If you see me out and about, be assured that it is a good day.

If you see me out and about, you are getting the best of me.

Life, it’s chronic.

Blogging, Breast cancer, Chronic Illness, Chronic Pain

Squatting With a Notebook

September 6, 2018  2:00 pm.

I am milking time before cruising to my next appointment, so let’s contemplate. Napkins are classically renown for recording enlightened, ingenious, seriously spontaneous ideas. Yet, most of mine end up in the garbage anyway. Actually, that’s where much of my writing has gone. So, I get a cheap notebook. Do you write in a composition book? Do you write in a notebook? A journal? I don’t know what a composition book is for exactly. The name of it makes it sound like whatever I write in it should be carefully composed, put together, presented. None of that elegance is going to happen right now.  Between the chronic string of car problems (the latest are outlined in my last post) and the season of back-to-school, I am compelled to pause and catch up on things that may be more fleeting. So, I bought a composition book for $.56. A notebook would have cost $1.56 and a journal costs about $5.60. Guess which one I chose for a day for introspection. Sitting in the sunny driver’s seat, parked with a notebook. A large discount store parking lot is not romantic and either is a composition book, yet I don’t care. People get out of their vehicles, free to breathe in sunny, breezy, Wisconsin September air. I can find romance in that.

Wouldn’t you know it?… Wendy just sat for half an hour parked with the headlights on! (Just a reminder: I am Wendy. If I talk in third person, then it takes some of the sting out of being reprimanded by myself.) Lucky for me, I was able to get the car started because Mike had left a jump-starter charged and in the back seat. Yes, we have that bad of luck with cars that we (Mike) has the foresight to have a charged jump-starter as well as a tire pump in the back seat.  The battery isn’t good to begin with. I let the romance of sunshine get to my head and forgot about the headlights. The jump starter worked smoothly and I am feeling so smart for starting my own car. Now the yellow check engine light is on.

September 7 2018 2:00 p.m.

Today I am back at the ‘large discount store’, awaiting a new car battery. I chose a battery with a good amount of cold cranking amps. I don’t know what that is, but I know that it means I will be able to get the car started.  The fine staff member informed me that I must wait 45 minutes to get the car in and yet  another 25 minutes for the installation itself. Really?! I suggest 15 minutes tops, but he came back with up to 25 minutes. To put a battery in a car. What the heck? I am only letting them do it because they don’t charge for it and there’s corrosion on the battery. I am not being suckered into wandering the store during the mandatory wait time so that they can take more of my money.  I just want it finished in an hour and then to pick up my son from school. The auto technician has the key. It is getting uncomfortably warm in here and I can’t roll the window down. Maybe there’s a bench outside the front of the store where I can loiter and write.

There is a bench. I think it is meant for employees, but nobody else is here. I sit with my  blubbery tummy in front of me. It’s very distracting. It’s not as if the rest of me is toned, but my belly- I can feel it move when I walk. I don’t know if it’s my reward for surviving cancer treatment and cancer or what. This sitting spot is a little bit out of the way and the parking lot next to it is, I always assumed, for employees. Overweight shoppers going to and fro in front of me. Am I assuming and making judgments about the customers? That maybe they’re parking over here to get more walking in? Perhaps they park here because they are non-conformists and prefer to separate themselves from the majority? Perhaps they feel their car is safer away from the busier lot? Now, here comes a lady pushing a man in a wheelchair. In his wheelchair basket is a mum to celebrate autumn and laundry detergent. No, I don’t mean that he is celebrating laundry detergent. But, who’s to say? He nor the lady are overweight. An average-sized lady with an averaged-sized, school-aged girl are just walking past. What is going on?! None of these people parking by the employee bench appear to be employees. Who are the people that park in this cove?

An employee is squatted on a nearby curb, tapping her phone with the fingers on the same casual hand with which she cradles her cigarette. Perhaps I took her spot on the bench. What is up with the lady on the bench writing in a notebook (or is it a composition book)? Does she come to this store for writing inspiration? That could be. This stores attracts herds of people, and brings in all kinds of which to observe. For all we know, that lady on the bench isn’t even a customer. Who’s to say? For all we know, she has quit smoking and is hanging out here simply to get second-hand smoke. All of the people by by this side lot are mysteries.

2:42 p.m.

A-ha! Another employee with a cigarette strolled by. No, I have no desire to smoke or for him to come back with the stinky, pukey air.

The lady on the bench has no boobs. I wonder if she tapes them down or if she’s had a bi-lateral mastectomy. There’s no way to tell. Coincidentally, (?), a lady wearing flip flops and a shirt with the “Hope” ribbon for a breast cancer cure strolls in front of the no boob bench lady. There’s always a good chance that someone will pass by her sporting an anti-breast cancer shirt. They are all of the rage these days. Are they supposed to raise awareness about breast cancer? Or, is it just a statement that “I like pink and also hate breast cancer”. Fucking cancer.

2:51 p.m.

They have 20 minutes to get my car battery done. Maybe I will go shop for fish, eggs, butter and yogurt. If my car isn’t in the shop yet, I will return this composition book and pen to the car. I don’t want people to think I have a special relationship with it. I am not a spy. It’s not like I sneakily carry around the book, peering from under the brim of my Green Bay Packers and record my observations everywhere I go….

2:58 pm.

A-ha! The car is not in the lot! Although I can’t see that it’s in the shop, I will assume that it is. I am giving them 15 minutes or less. I’ll just squat here on a curb without a cigarette, looking suspicious because I don’t have a cigarette.

3:07

Just paid and checked out. The technician had pulled the car up by my sitting curb. Curbside service. Now that is service I can smile about! The Honda started right up and the check engine is off for now. Life, it’s chronic.

My coeditor: I read the text to her and she keeps her comments to herself.

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automotive, Chronic Illness, Chronic Pain

Windshield Fairies for my Birthday

Nobody gets by unscathed, no matter how well maintained. We were meant to break, but we were meant to kindly build each other back up. That’s what my birthday was like, because my husband is my rock.

My family’s cars have been used and reused. They are in a constant state of repair.  We have four. I know, it’s ridiculous. My husband’s day job is managing information and programs for a major air conditioning company. His night and weekend job? Maintaining our vehicles. My day job is managing my body and energy. My night and weekend job? Feeling guilty about my day job. I know, I have to get a better job.

Happy Birthday to me!…. For my birthday, my husband scheduled time for auto glass repair technicians to come to our home to replace windshields on the Honda and the Chrysler. Yes, for my birthday, on my birthday. It was one of the best presents I could have asked for. I had gotten so sick and tired of  hearing myself nag to my husband about the cracks that go across both windshields. I have been nagging for a couple of years now. I can still hear my annoying, whining voice in my head, squawking about that windshield. I was equally annoyed by his continual retorts that it wouldn’t be worth it, because the vehicles probably wouldn’t make it through another Wisconsin winter anyway. So, should I wait until winter for it to crack apart and crash onto my lap? Call me crazy, but driving down the highway with thousands of cracked windshield cubes on my lap in subzero temperatures is not my idea of fun. I may be a Green Bay Packers fan, but not one of those crazy ones that wants their eyes frozen shut as they drive down the road. That would be very unsafe. So, after a couple of years of whining, he scheduled to have them repaired. On my birthday.

Happy Birthday to me!… The day before my birthday I took my migraine pills, cursed fibromyalgia, tested out a magnetic bracelet for pain relief, wondered how much of my fatigue was a part of cancer treatment recovery,  slept away the day and held my breath to see if the windshield fairy truly would come. By day, my husband Mike was working and making meals. By night, he had pulled the Honda into the garage to make another dream come true; Mike would fix the brakes on the Honda so that our son can drive to a new high school, out of our district, to pursue the educational experience he dreams of. Meanwhile, Jake, our son, drove the Focus back and forth to the city for auto parts.

It was 8:20 p.m. when I woke up to Mike saying that he had to leave. Jake had been in a car accident and that Jake said he was alright. He had been hit while turning by the auto parts store. Knowing that Jake was alright and that Mike was there for him, I decided to stay in bed and rode the struggle bus with my headache and nausea. Texting and waiting to be texted, I worried. Somehow, they still had managed to get the parts for the brakes before the store closed at 9:00 p.m.. The guys got home safely and I convinced my husband to wait until morning to get the Focus towed home. He had had a long enough day. 

7F13C5BE-312D-40C5-B935-2D7B97A3A253The next day was my birthday. I felt a little better. Slow, but steady. I ate. Mike took the Honda with its new brake drums to meet up with the tow truck driver and the Focus in the city. As rain sprinkled through a sunny sky, the windshield fairies arrived in my driveway, prepared their work area and tools, then swiftly got to work.

Windshield fairies don’t do brakes, which is unfortunate. Although Mike had fixed the brakes on the Honda, he had to drive home with only the emergency brake. He had done a fine job of fixing the brake drums, but the fix had fixed so well that the increased pressure broke the rusty brake lines.  Mike made it home safely to our driveway where the two grown fairies stood with their work truck for an extra hour. Patient and kind were they.

Two broken cars, a tow truck and Mike made it back home safe and sound. And the magical auto glass specialists were there ready to make our road views anew. After they had fluttered around and buzzed on their cell phones for an extra hour in wait to once again work their magic on another windshield, we filled the garage with the Honda, that apart from the broken windshield we thought had been fine that morning. The tow truck crane gently took the smashed car to a second rate spot on the lawn. Sweeping into the garage, the windshield fairies once again worked their magic. Mike gave the fairies an extra treat for being so kind to stick around and work their magic on the second windshield. Everyone was safe, sound, sick of cars. Well, Mike and I were anyway. Happy Birthday to me!

It still being my birthday, I rested on the couch. But, my son wanted to do something to make my day special. Bless his heart. We all sat outside in the sun at my favorite restaurant. I had a Dr. Pepper with my favorite meal. Soda is like poison for your body, yet I felt compelled to reward myself with some. A very old lady said that her secret to living to an old age was having a Dr. Pepper everyday. It doesn’t really extend your life. We capped off the day around a campfire with family and drove safely home. Happy Birthday to me!…

Within only days, there have been a couple of trips back to the automotive store and my husband has worked his own magic on restoring the brakeline. Our son’s dream of taking the Honda to his new school has come true.

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And… now we are onto the body of the Focus.

Life, it’s chronic.

 

Thanks for visiting!

Breast cancer, Chronic Illness, Chronic Pain

The Picture of Health

Featured Photo: Nathaniel T. Schultz Photography, Minneapolis.

 

Below is the picture I took the day after mammograms, ultrasounds and a biopsy. It is also the ‘before’ picture; before the official breast cancer pathology report and more than a year of treatments.

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It is my first ‘before’ picture. Before the official breast cancer pathology report came back, before having chemotherapy, before the bilateral mastectomy, before weeks of radiation, and before I would have a year of immunotherapy treatment. Before basically living at the clinic and knowing the names of so many people taking care of me the best they could. I knew that I would end up taking pictures along the cancer treatment road. I knew I was not going to ever be the same, physically or mentally.

Looking through my Facebook feed one day, I came across one of the photographers I had been “following”. His name is Nate Schultz. My daughter had previously modeled for him and I had been following his work since; beautiful, original artistic work. Nearing the end of my cancer treatment days, he posted a black and white photographic composition of his which I really found unique and particularly intriguing. It was an artistic nude photo of a subject that looked to be young and seemingly healthy, which is beautiful in and of itself. The photograph is burned in my mind. It got me thinking more about the human body and the appreciation for the bodies of different ages, not just the coveted beautiful bodies of childbearing-aged women. I tried to google pictures of older nude models and candid nudes of people from around the world, National Geographic type pictures. I ended up frustrated with how little my searches had turned up. Maybe I wasn’t searching enough?

Still, I continue to hold that one particular photo of Nate’s in my mind. Of course I “liked” the photo on his Facebook page. (If you would like to see it, it is on the Facebook page of Nathanial T. Schultz Photography, the February 9, 2018 post.) I made this comment on that post:

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By this time, I had over a year of cancer treatment under my belt, a year lacking exercise, a year of personal growth and reform. My body transformed. And I was challenging both myself and Nate to embrace the change. To my delight and surprise, he extended an invitation with open arms. We would meet. We would create.

For real! I felt humbled, respected and impressed for the chance to have a subject like me be an example for others to see, as well as a reflection for me to see. I was upfront that I am no model, and I couldn’t pay him, which Nate was fine with. He was presenting it as a gift. He wanted me to be myself. I found it to be so accepting, comforting, and flattering. It was cause to trust him as an artist and a friend. Life hands us losses and hands us new joyful gifts. Opportunity is handed to you to do with it what you decide. Nate decided to take his talent and love for photography and make an opportunity to live with passion and encourage others’ passions.

We scheduled to meet up on a March winter’s day, the day before spring was to start. I drove the mini van up to the studio through the overcast 30+ degree, typical winter day to Minneapolis with a migraine hangover on board,  and a dragging fatigue. Inside, though, the energy climbed. Excitement and pride rose in anticipation of the new meeting and the opportunity to share my truth through new art. . I entered the old and worn building that has been dedicated to creativity and ascended the stairwell.

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Coincidentally, it was the last day before my final breast cancer treatment. Nate and I met with a hug, then shared stories about cancer: his loss of many loved ones, my cancer-free pathology report and how the cancer has changed me and my loved ones.

Like I said, I am no model and I feel even less so since my body’s immune system was taxed, my muscle strength deconditioned, my energy level sunk, my chest became a surgeon’s project, I gained more than 25 pounds and my hair is growing in curly from the chemotherapy. It is an awkward duckling transformation from what I had gotten used to being.

It is spectacular how gracefully a human body can fight and how much others’ grace helps it to heal. How the human spirit lives!

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Nathaniel T. Schultz Photography

This picture is the new ‘before’: the kickoff to life after cancer.

Within one hour, Nate and I met face to face, shared vulnerable stories, made a snapshot of a story and, with a simple connection, he tricked an unexpected, spontaneous laugh out of me!

Life will expose you. It will make you laugh. Life, it’s chronic.

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Our see-you-later selfie.

Chronic Illness

Migraines are my Own Fault?

I don’t know if it’s because I am a woman and the things I heard growing up, but I can’t help feel like migraines may be my own fault?

 

Keeping my head up, I try to not make myself out to be a victim or make things larger than what they are. This is a post that would be something I would not want my kids to read, because they already feel bad enough. It kills me that they have had to hear and see any suffering.

As I sit here keeping calm, I regretfully disclose that I missed my three month visit to the neurology department at Mayo Clinic in Rochester, Minnesota. It was my fault that I missed it. In the days prior, I got caught up in everything else but myself and forgot myself. As a result, I missed my Botox injections. I can’t get in for another two months now. There goes my life for the next two months, and it is all my fault.

The Botox injections are a godsend. I don’t know if they’ll eventually find something dangerously wrong with them, but if they do… it will have been worth the relief. The migraines are a wrath from hell without them. The Cefaly device I have helps the migraines that peek through while using Botox for the headaches. It even helps some without the Botox, but not enough to get me out of hell.

Migraines make me feel like I am being punished for something. They grip my head and flare up the fibromyalgia pain all over my body. It becomes an explosion. Throughout my research on both migraines and fibromyalgia when I searched for answers to make them go away, I came across people who claimed they cured themselves by praying to God, or by eating more greens. I have changed my diet. I do pray to God. Still I feel like I am being eaten alive.

Growing up, I saw women with headaches. I heard people imply that women get headaches because they are nervous nillies. That kind of mindset sticks. By nature I am a nervous person and have become much more laid back than I thought I could be. People do change some. Growing up makes that happen. My body has aged and changed, but now my body is just as nervous. My hands quiver when sitting still. When I hold onto a book, my son will hold my hand still to keep it from shaking.

My grandmother suffered from horrible headaches for as long as I can remember. My parents suffer from headaches as well. The use of the word suffer is not used lightly here. It is used to describe a debilitating state of infliction, not an inconvenience.

Logically, I know that the headaches are not my fault. Still, I can’t help but worry that my daughter will inherit my pain one way or another. Life, it’s chronic.

Chronic Illness, Chronic Pain

You are One of Life’s Mountain Goats

It’s not just about the climbing. It’s also about standing up.

Life is like a mountain and you are like a mountain goat. There are times in which you need to climb up. There are times in which you need to climb down. There are times you must stand your ground. There are times you must simply stand still.

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First of all: mountain goats aren’t goats. They are related to goats, but more closely related to gazelles and antelopes. So, you may choose to consider yourself a mountain gazelle or mountain antelope if it suits you.

You must climb up. Soon after birth, young mountain goats must dash among the mountain terrain with their mother. Ironically, it is for safety that they must climb dangerously high on intimidating slopes in order to defend themselves from predators such as cougars and wolves. We must also skillfully work our way to the high road, taking courses of action that lead us to not only the most acceptable place, but the place that would least likely get ourselves or others in harm’s way. Look where you are going, and steer clear of the wolves in sheep’s clothing.

You must climb down. There are times when we must just first survive before we can thrive. In the winter, mountain goats will come down to lower ground to eat, being vulnerable to being preyed upon by the wolves. Oftentimes we need to take risks in order to develop and grow. Our challenges may make us stronger or they may make us weaker; but our challenges make us. Be mindful of the wolves in your life. Take responsibility for your own needs.

You must stand your ground. A mountain goat knows how to fight for their best life. During mating season, billies (males) will fight each other with their horns to get the right to mate with the female. Females fight females. These nannies know how to use their horns to protect their territory, their kids, and their food. It is not a stretch for me to relate to these measures. We all want to find someone to bond with. At the same time, we know how to claim our territories and resources. It’s when we get a little too obsessed in claiming these things that we compromise our relationships.

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There are times when you simply must stand still; keep your balance. Mountain goats are famous for this. They are built with the cloven hooves and toes that spread wide. Pads on the bottom of each toe are rough and make it possible for them to keep a good grip. We also need to keep a good grip on our lives. Focusing on one spot can help you balance on one foot. Focusing on the priorities and potential dangers in life can help balance your life. Mountain goats will rest under the shade of an overhang. Rest and enjoy your view.

We need to know when to move forward or take a step down.  We need to know when to stand our ground and when to stand still. Look up; look down; look out. Assess your situation. Keep your footing. Take a deep breath. Life, it’s chronic.

 

For more information on mountain goats, visit:

http://www.nationalforests.org

http://www.defenders.org

http://www.nationalgeographic.org