WriteRN Ramblings

My baby boy is sick. He’s on round two of a stomach virus, and it’s triggered his bleeding disorder, which is an autoimmune disorder.

My baby, my first born, is 33.

He first got sick with this when he was seven years old. He came home from school and was covered in bruises, the largest a deep purple, and covering his entire right forearm. I asked him if he’d been kicked by a horse. He just shrugged – he had no idea how he got the bruises.

I was not a nurse or medical at all, so I immediately thought it was leukemia. Instead, I was told he had ITP, and a platelet count of 5,000. It was supposed to be 140,000-300,000.

ITP has many names – idiopathic or autoimmune thrombocytopenia pupura. It’s a low platelet count, and bruising. Platelets are a part of a very complicated system that clots blood. From age 7-10, my son was hospitalized multiple times, often with platelet counts less less than 1,000. It was harrowing to know what could happen if he fell down. Hit his head. Got in a fender bender when I was driving. Etc.

For a couple of years, he was on high dose steroids. It helped keep his platelets up, but it made him gain a lot of weight, and he got cushionoid. He looked like an overweight kid. It was the steroids, but he still got bullied.

At the age of 10, the doctors advised me to consent to a splenectomy for him. They said there was an 80% chance it would cure his ITP. It was a big training hospital, and he had a great doctor. I had an organ removed from my child. It’s a terrible thing to choose.

Within 2 years, his platelet counts began to dive again. They did a CT scan. They thought they saw an accessory spleen – he had 4 accessory spleens when they took his spleen out the first time. They asked to go in laporoscopically and take it out. I let them go into my sons abdomen again.

After a couple of hours the surgeon came to me, crying. They didn’t find anything with the scope, so they had to open him up again. She found nothing. So my son was filleted open for nothing.

The rest of his childhood was intermittent visits to the hospital. His platelet level crawled up into the 20,000 range, with no symptoms. His body was compensating. Short bursts of steroids were given, or gamma globulin, a blood product, when he was hospitalized again. By now, I was a nurse, and was adept and dealing with these acute episodes.

When he graduated from high school, he had platelet counts in the 60-80,000 range. I was happier that they are higher. I also had to turn over the reins of managing his ITP. This was extremely difficult.

Whenever he gets sick now, his body will attack his own platelets. The spleen is the largest organ of the lymph system, and the remaining lymph nodes are working full force.

As an adult, the stress of all the hospitalizations has made him wary to be treated. He eats healthy, and he takes a lot of vitamin C. He tries to stay well. He works with the public, though, and is exposed to viruses.

So here we are. He has a virus. He lives an hour away. He is symptomatic. He doesn’t want to go to the hospital – he doesn’t have insurance. I give him advice on the stomach virus. On fluids. On disinfection. I make him promise me he will go to the hospital if he has a bleed, or a headache. He gives me his word. My parent live within five minutes of his house. They are at the ready. He says he will call them if anything happens in the night.

I HATE THIS!!!!

He’s always my firstborn, my baby boy. I feel so helpless. Just like I have for the past 26 years.

I pray he gets better and doesn’t get hospitalized. I also pray they will find a cure for this obscure disease which strikes my child intermittently with acute, frightening flare ups.

May tomorrow bring better news.

Current heat index is 95°.

It’s 5pm, and it’s the end of September.

I’m. Over. The. Heat.

I am not a hot weather person. I love seasons, and fall is my favorite. I like winter. I like spring. I don’t enjoy summer.

I live in the sweltering south.

My children and family are largely located in this hell hole now, so I’ve been trying to make my peace with the heat.

It’s not working.

Now, to add to my misery, I’ve been diagnosed with type one diabetes, and the heat literally messes with my blood sugar.

Nothing would make me happier than to move. North. Out of the south.

We talk of retiring in Kentucky, and that still counts as south, and they have seasons.

I also have grandsons now. I don’t like being far away from them. I have learned this the hard way from the child who married the Air Force. Those grandkids are way up in the Midwest. No bueno.

Meanwhile, it’s too hot to breathe outside. If I want to walk the dog, I have to go early or late in the day, lest I cook her pads off her feet. When I try to exercise, I am drenched in sweat five minutes after I exit my well air conditioned house. I come home covered in gnats.

Deep sigh.

I hate hot weather.

It’s been a strange summer here in my corner of the south.

Usually, my back porch at night is crawling with flesh toned geckos, going after the flying bugs that have the misfortune to light upon the screen.

This summer, I’ve only seen one. A poor sample at that, with its tail snapped off.

We have our fair share of spiders, but this year, the yard azaleas were fairly adorned with multiple huge webs of golden silk orb weavers – a very large and scary looking spider, with leg spans up to 5″.

Smaller, but just as prevalent, the orchid spiders infested the crepe myrtles and camellias out front, their florescent orange markings bright against their grass green legs.

Why were there so many spiders, and so few geckos this year? Also, the other lizards were no where to be seen, usually running across the driveway, bobbing their heads and extending their necks as they made a clicking noise to call a mate.

Saddest for me was the lack of tree frogs – sticky little bright cheerful looking amphibians, clinging to walls and posts and doorways. They are always around in the humid summer months. Not this year.

Did the spiders get out of control due to lack of frogs and lizards? I’ll never know.

What I do know is that today as I was walking out to get the mail, I spotted a tiny green tree frog on one of my plumerias. I was so excited, I ran back in to the house take a picture of him.

I’ve missed the little fellas. He made my day.

We have at least one more month of suffocating heat to go in our extended summer. I hope to see things get back to normal, if just for a little while.

Earlier this year, the Longaberger company closed.

For those who never dealt with Longaberger, it was a blip on the news. Others rolled their eyes about the “overpriced baskets”. As for me, I’m in mourning.

I bought my first Longaberger basket from my best friend in 1999. (It is pictured below). Back in those days, most sales were in homes, via a party. I went to several parties, and would buy items that caught my eye. I like a country look in my home, and the fact that they were made in America made me like them even more.

Several years later, I became a consultant- mostly so I could get a discount. Soon, though, the name Longaberger came to mean so much more to me.

One of my best friends was a very successful consultant, and also a great trip planner. We began an annual fall journey up to Dresden, Ohio, with a group of girlfriends.

We live in a part of the South that doesn’t see fall, and our trips immersed us in fall splendor. We stayed at local bed and breakfast inns, crunching through fallen leaves, and drinking hot cocoa.

Dresden, Ohio, is an all American small town. It’s a lovely town, and when we were there, it was thriving. During peak season, dozens and dozens of tour buses would empty into downtown Dresden. It is the home of the Longaberger family, and the shops were full of Longaberger factory products, as well as craft stores, candy stores, and even an old IGA.

The whole town would be decorated for fall and Halloween. We’d eat handfuls of fresh made kettle corn, holding us off until we would go to Popeye’s for lunch. This was not the chain restaurant, but the restaurant where the founder, Dave Longaberger, worked in his youth. Patty melts and one bite sundaes were the treats we savored.

We would also spend a day at the factory store and the Homestead. We’d make our own basket, and I got to know firsthand the love the weavers had for their company. We were greeted warmly, and proudly took our creations home, with our initials next to the expert weavers initials on the bottom of our basket.

The Homestead was a collection of stores full to the brim with baskets, crafts, garden trinkets, stuffed animals, kitchen ware, and edible delights. With a huge basket of apples decorating one end of the street, we’d walk down to the barn at the other end. All the way through, the pride in their brand, and their love of country, was evident in the employees who greeted us.

We went back for several years in a row. I loved it every time. I bought many gifts for family and friends, shipping them home from the Homestead.

At night, we had dinner in the cozy B&B, or went downtown to join the Longaberger family members my friend had become acquainted with. Many laughs, much love, and a little karaoke happened on those nights.

My heart broke when I read of the closure of the Longaberger factory. My heart aches for the weavers. Also for the town, that now has rows of empty store fronts. No more tour buses come through.

I love all my baskets and pottery and ironwork, along with the other items I bought in Dresden over the years.

The years I spent going to Dresden are always going to be treasured memories for my friends and I.

I pray Dresden will be able to survive the loss of the factory.

A year ago today I started a new job. After ten years at the same job, it was time to make a change. I loved what I was doing, but the stress of the job and politics involved were having a major impact on my health.

Now a year later, I am not working as a registered nurse, but instead I’m a stay at home wife, mom, and Nana.

I learned a lot in the nine months I was at that office job. I went into the job full of excitement and ideas of how I could be the best women’s health nurse I could be.

The love quickly turned to disillusionment . The hospital system, which I had worked for in 2000, had been taken over by a new system. The excellent insurance I had back then was now the worst insurance I have ever had – by far! We paid a huge amount out of pocket. At this writing, there is no doubt that we paid a heck of a lot more into it than we got out of it.

This job, too, had office politics – but I don’t know a job that doesn’t. I met some very kind people, though, and for that I am grateful.

Overall, it was a heart breaking experience. I left with more than two weeks notice – the health system sent me a cobra note saying I was involuntarily terminated. Considering their HR was in a state far away, I could see the mistake being made, and I got it corrected.

It wasn’t the health system I had worked at and loved.

I don’t regret leaving – I am busy with life, writing, speaking, and healing. I’m savoring the time with my spouse.

It is yet to be seen if the chapter of being a nurse is closed. It feels like it to me, and I’m okay with that. Financially we don’t need two incomes, and that is a blessing.

It’s just bittersweet to look back on the myself a year ago today, so excited, so ready for a new job at a place I had loved to work at.

Little did I know that ship had sailed, swallowed up by a big, anonymous healthcare system that forgot its roots of serving the community, and valuing its employees.

Bittersweet, indeed.

It seems to me, in this fractious and argumentative time we live in, that the anniversary of 9/11 is especially important. And poignant.

That morning in September I was just home from a night shift. I was exhausted, crawling into bed after a long night at the hospital, and my mother told me to turn on the TV.

The first tower had just been hit. She made a comment of what a terrible accident that was – I responded “That was no accident”. I had to work that night, so I shut it off, shut out the world, and went to sleep.

The full impact of what happened while I slept hit me full in the face when I woke up and turned the TV on. It seemed like a nightmare. Nothing like this had happened in my lifetime. I never knew there could be such hate.

That night, we only had one couple come in to have a baby – and they were Islamic. It was awkward. They were nervous, and we were sad because this moment of new life would ever be marred by the events of the day. Not for one moment did we wish ill on them or look down on them.

All these years later, hatred has grown and terror is world wide. Radical Islam has become something we are all too familiar with. Fear is something that hovers in the back of our minds when we travel.

As the anniversary of 9/11 comes, my prayer is for peace. We must never, ever forget the evil that caused the deaths of the innocents all those years ago – and still is causing pain and suffering, physically and mentally.

Praying for peace does not mean blindly looking away or ignoring evil as it tries to take root in our country and around the world. The hastily bulldozed compound in New Mexico reminds us that the evil is alive and well.

Protect our country. Protect the world. Open the eyes and minds of those blinded by hate, and help them see the Truth.

Let there be peace on earth…let it begin with us.

It’s another Hallmark holiday – Grandparents Day.

I do think grandparents should be celebrated! It’s an honor to get to the stage in life where you are a grandparent. Not everyone gets the privilege.

I was an Air Force brat, and had very few interactions with my grandparents. I always felt I was slighted in life by this situation. It was beyond my control, but I wish I had gotten to know them.

My mother’s dad had early onset Parkinson’s disease. He died when my mom was in her 30’s, and I was a young child. The few memories I have are sad – he was a shell of a man, unable to recognize my mother. My step gramma took care of him at home. It was painful to watch my mom try to connect with him.

Her mother passed away in her 50’s of complications of diabetes. So my mother lost both her parents, and subsequently I lost my maternal grandparents, at a very young age.

My dad’s dad died when I was in high school. The only memories I had of him were of his constant smoking, and he always had clear blue mints in plastic wrap with him.

My paternal grandma lived to be 93. I had the opportunity to have her live with my kids and I for several months when she was 92. She had an amazing sharp wit, and was very funny. I had a whole lifetime of never getting to know her, so I jumped at the chance to have her stay with me. My kids got to meet their only surviving great grandparent, and precious memories were made.

My parents are very involved in the lives of all their grandkids. It’s wonderful to see my kids grow up with grandparents – and their kids with great grandparents!

The icing on the cake is my husband and I are grandparents to three boys – with two more on the way! It has been a pure joy, and we know firsthand what a privilege it is.

I’m counting my blessings, and grandparents are definitely on the list.

Deep sigh.

I had a wonderful afternoon at the beach with my hubby. The tourists are gone, the temperatures are perfect – it was just a lovely afternoon.

I’ve been to the beach here more times than I can count in the last twenty years, but in line with my mindfulness goals, I wanted to really be present at the beach today.

Where we sat, there was a little stream of water that had formed a small sand bar. The waves were low and slow, and I went out to the sand bar and sat down.

I was acutely awards of the hiss of the waves as they whooshed in around me, withdrawing just as fast with a foamy fringe of retreat. I watched the sand piper race the surf, frantically puncturing the sand for mollusks before the water returned.

I closely examined the tiny shells that were already at the end of their life cycle, but were delicate, beautiful treasures in my hand. I felt the white sand fluidly melt away under my hands by the relentless pull of the tide.

My breath matched the cadence of the gulf waves. The seagulls swooped and sang overhead, as brushed cotton clouds slowly drifted east. Behind me, the rustle of sea oats framed the horizon.

I sat there for several minutes, just taking in the beauty in the sights, smells, and sounds around me.

I’m so much better for it.

Ten years ago I got married to the love of my life.

He’s not perfect – neither am I – but he is pretty awesome.

Eight years ago I was diagnosed with type 2 diabetes.

My hubby had always been in my corner. He encouraged me as I went from couch potato to half marathon runner (x20!)

He ate the new low carb food I cook with no complaints, and supported me as I struggled to get healthier.

He was at the finish line when I did the WDW Glass Slipper Challenge – a 10k one day, half marathon the next.

In August, I got the devastating news that I was a type 1 diabetic, and would be on insulin for the rest of my life. He’s held me as I cried. He’s patient when I’m wrung out and completely exhausted by the disease.

I’m sick of it all. Some days I’m so frustrated I can’t see straight. He reminds me how fortunate I am to have the Omnipod and Dexcom.

When my blood sugar tanks in the middle of the night, he gets up with me and stays with me until I am back on track and stable.

I hate being sick. I hate being a burden. He never makes me feel like I am either.

All I want is to get back to running – but so far I haven’t found out how to do so without my blood sugars tanking. In the mean time, he walks with me.

I’m very blessed to have a husband who loves me in sickness. When I took those vows, I had no idea what it would mean to me.

They mean the world to me now.

I have the misfortune of being on the east side of fading tropical storm Gordon. A storm, by the way, that was just at hurricane 1 strength when it hit last night.

I’m grateful for the ability of weather experts to prognosticate when and where a tropical system will hit. I watched this storm race across the Gulf of Mexico, and I didn’t think it would impact us much.

Wrong, I discovered last night as the tornado warning came out. We spent almost 45 minutes in the walk in closet, watching the news on our phones, as a sighted tornado took aim at our area.

Sigh.

It’s now been raining continuously for almost 25 hours. Even with our quick draining, sandy lots, there is a lot of flooding.

I’ve been waiting for the rain to stop so I can go to the store – as I write this, another gust of heavy rain has blown in.

For all the good of forecasts, I still look forward to the end of hurricane season. With two more storms ramping up in the Atlantic, it gets old fast.

I guess I’ll get my rain boots on and grab the big umbrella, and head out. Better now than when the dark of nightfall is added to this mess.