Posted on by A Laughing Matter

Quiet Quitting

This buzz term is popular in 2023. What is it? What does it mean to you?

There are two schools of thought. Some believe it to mean divorcing your ego from what you do for a living and not striving for perfection. Setting boundaries and simply doing what needs to be done but not allowing yourself to fall victim of workaholism. A trap of making yourself available at all times to work that doesn’t serve your greater purpose; that which doesn’t support your mental health, your family, or your physical health and wellbeing.

The other philosophy about this phenomenon or trend really is giving up…quietly. Is it self indulgent? Is it passive aggressive? I suppose it could mean any or all of the above depending on the circumstance.

I’ll tell you what I think (it’s my blog after all). If it’s work related, I think this can be healthy. I think balance is important. Don’t get me wrong – I don’t define this as doing a job half-assed or mediocre. I don’t define it as blaming others. I don’t define it as poor customer service. But doing your job well while setting boundaries and knowing work is only a part of you, not your worth, that I can get behind. It doesn’t define you.

That said, what if it’s about your health. Specifically your weight. Have you given up? Have you tried so many things you’ve accepted being overweight? It “runs in the family” so change isn’t possible? I’ve waited too long. I’m too old. I’m too far gone. I can’t. I don’t know how. I’m embarrassed. I’m ashamed to ask for help. What’s the point? Or the worst in my opinion…and this is going to ruffle some feathers…. is telling yourself its body positivity. You lie and tell yourself that you are confident and “like yourself the way you are”. That’s a bad space to be in. I want you to love yourself while knowing it’s not healthy. While seeking help. While striving for change.

I also know that somewhere in the deep nooks and crannies of your inner voice, you want this. You see my posts. Could I try? Maybe I should reach out.

I’ve helped a lot of people lose a lot of weight. Some only 10 pounds….others 110 pounds. Some teenagers. Some in their 70’s. Some…actually A LOT of middle-aged. Especially women. Hormones are not for the faint of heart.

So what is it you want…deep down. You love your family and friends and they kinda want you around. Show up. Show up to your life again.

I want you to message me right now. You don’t have to comment on my post. Reach out directly. I’m not here to judge. Life is hard but being healthy makes it a lot more enjoyable. (It’s ok if you don’t want to start until January. I get it. BUT these discounts right now are worth reaching out THIS MONTH.)

Posted on by A Laughing Matter

The Ya-ya

Meet ya-ya. Ya-ya has been in the family since the planning of Katie’s nursery. She’s tattered. She’s torn. She loved. She’s adored. Honestly I’d have gotten 20 of them if I knew she’d still be around.

What’s your comfort? What do you take refuge in? What’s your ya-ya? I don’t mean something material. That’s too easy. What’s that “thing” you rest it? You zone out to. You chose not to take action because this is easier to chose. Your go-to. You’re starting to get a little itchy now right? “This took a turn. I didn’t know she was gonna take it there.”

Is it waiting till the kids go to bed..finally and watching Dateline and eating a sleeve or Oreos? Is it going to bed early and then watching TikTok for 2 hours? Is it catching up on celebrity gossip instead of calling a friend? True crime podcasts excery day instead of Mel Robbins or something else uplifting.? Is it cleaning your house obsessively to avoid the tasks you really need to do? (That is definitely not me) Maybe it’s shopping. Overspending is much more fun and working on a budget. Is it the mommy wine culture? One glass on Friday night turns into two glasses on Tuesday?

Let’s flip the script. You can’t change everything overnight. You can’t avoid every stressor. You can’t control others but you can chose you. Let’s all stop pretending everything is fine. Let’s all move out of the #blessedlife. Let’s stop hiding. Let’s lift each other up. Let’s find a healthier “ya-ya” that serves you. You’re better than that. You’re here for better.

Posted on by A Laughing Matter

Next Steps

Yesterday I took Katie back to Vanderbilt for a follow-up. We had hoped her PET Scan/EEG would have given more comprehensive data but her condition and prior surgeries make the test difficult to pinpoint anything. We knew this may be the case but I was hoping we might get lucky. As suspected her right frontal lobe isn’t firing as it should. Her case was discussed at conference. Conclusion: More data needed. More testing

Next steps are for the pediatric neurosurgeon and the adult neurosurgeon need to connect after spring break but most likely we are looking at a stereo EEG. This is a more invasive EEG to better pinpoint where the seizures a generating from.

On a fantastic note, She has not had a seizure in 3 1/2 weeks. What a relief. We had gotten back to a place of 20-30 per day so this has been a nice break. A part of me wanted the neurologist to say, “Let’s just put things on hold for now.”But we know the big picture. We have seen time and time again over the past 15 years that she will have a honeymoon period after a procedure or med change. Sometimes they last a few months. Sometimes they last a few years. It is what it is. The RNS procedure is mostly likely going to be what changes her outlook longterm. We are pressing forward and hoping to get the next testing in another month or so.

Today is day three of Spring Break. The boys are working so it’s just me and my shadow. We always have a love/annoy relationship going but after a day long rode trip…..she is on my last nerve. God love her. Bless her heart. Bless my heart. God help me. 5 hours in the van. All day. She napped on the way so lucky me. Headphones in. Crime podcast on. One the way back….not so lucky. She loves to lean forward and pull my hair or pull my seatbelt and try to choke me out. It’s real. All the while laughing hysterically. The other annoyance is she constantly wants to change out her DVD. She has a couple CD holders to organize them and she will flip through and perch the next movie on my shoulder to change it out. It’s like driving with a monkey.

So that’s the scoop. No fun Spring Break for us but hopefully we have lots of seizure free days coming. If you want to read more about her next text click the link below.

Stereoelectroencephalography (SEEG)

SEEG is the surgical implantation of electrodes into the brain in order to better localize the seizure focus. At UPMC, we use robotic assistance with ROSA® to accurately and efficiently place the electrodes for seizure mapping. Dr. Gonzalez was the first epilepsy surgeon in the US to offer SEEG and has performed over 1000 cases. He is also a pioneer of robotic-assisted neurosurgery, which improves accuracy and shortens surgery time.

https://www.neurosurgery.pitt.edu/centers/epilepsy/seeg

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More Testing

This morning we drove to Vanderbilt children’s hospital. They hooked Katie up to an EEG and then did a metabolic PET scan of the brain. She did well. She always starts getting upset when someone comes in and puts gloves on. She got a quick EEG first and then they gave her an IV to administer the tracer. This is what shows at a cellular level how her brain is functioning.

After we headed to the cafeteria and got her the pizza that she’s been asking for all day. She wasn’t allowed to eat after midnight. I would have been seriously hangry and cranky myself.

I’m not sure how long it will take to get results back. I foresee the next level of testing will be several days in the hospital.

Thank you all for the comments, prayers and well wishes.

Here’s a bit of information about this test. Not an exciting read but I tried to just reference how the test is used for the brain; though this test is used for many other conditions.

What Is a Positron Emission Tomography (PET) Scan?

A PET scan is an imaging test that lets your doctor check for diseases in your body. The scan uses a special dye containing radioactive tracers. Certain organs and tissues absorb the tracer and help your doctor see how well your organs and tissues are working.

A positron emission tomography (PET) scan is an imaging test that allows your doctor to check for diseases in your body.

The scan uses a special dye containing radioactive tracers. These tracers are either swallowed, inhaled, or injected into a vein in your arm depending on what part of the body is being examined. Certain organs and tissues then absorb the tracer.

When detected by a PET scanner, the tracers help your doctor to see how well your organs and tissues are working.

The tracer will collect in areas of higher chemical activity, which is helpful because certain tissues of the body, and certain diseases, have a higher level of chemical activity. These areas of disease will show up as bright spots on the PET scan.

The scan can measure blood flow, oxygen use, how your body uses sugar, and much more.

A PET scan is typically an outpatient procedure, which means you can go about your day after the test is finished.

In the United States, around 2 million PET scans are performed each year, according to Berkley Lab.

Why is a PET scan performed?

Your doctor may order a PET scan to inspect your blood flow; your oxygen intake, or the metabolism of your organs and tissues. PET scans show problems at the cellular level, giving your doctor the best view of complex systemic diseases.

PET scans are most commonly used to detect:

• cancer

• heart problems

• brain disorders , including problems with the central nervous system.

Brain disorders

Glucose is the main fuel of the brain. During PET scans, tracers are “attached” to compounds such as glucose. By detecting radioactive glucose, the PET scan can show which areas of the brain are using glucose at the highest rates.

When a specialist interprets the scan, they can see how the brain is working and check for any irregularities.

How does the PET scan compare to other tests?

PET scans show metabolic changes occurring at the cellular level in an organ or tissue. This is important because diseases often begin at the cellular level. CT scans and MRIs cannot reveal problems at the cellular level.

PET scans can detect very early changes in your cells. CT scans and MRIs can only detect changes later, as a disease alters the structure of your organs or tissues

Posted on by A Laughing Matter

What day is it?

I’m losing track of the days. I’ve been to the ER 3 times in one week; twice in Knoxville and once in Nashville. Knoxville doesn’t touch Vanderbilt University Medical Center. We are definitely in the right place. ETCH just isn’t equipped to handle Katie. We got an appointment with neurology mid March but Friday night Katie was getting worse. She had other ideas about how this would all go down. We drove up Saturday morning. We spent several hours in the ER but finally got hooked up to the EEG and then moved to the pediatric floor. The bad news: Katie has had lots of seizures. The good news: Katie had a lot of seizures so there is lots of data to work with. I wish I could say we would spend a few more nights here, cut into her skull and fix the problem by mid week. However, this is really complicated stuff. Can I even call it “stuff”? Lots more testing needs to be done. She will get an MRI tomorrow with and without contrast (basically they add a tracer so they can see better). A more invasive type of EEG will need to be done followed by a PET scan. This will most likely be scheduled for another time.

Immediate goal = get the seizures under better control so she can safely go home.

Mid goal = get more testing on the calendar

Ultimate goal = Katie will hopefully be a candidate for surgery AND it will be approved by insurance. It’s only been performed in 2 pediatric patients post hemispherectomy…like…in the world.

I stayed with Katie last night. We typically get a hotel and take turns staying with her. She clustered yesterday and had about 25 seizures. NOT FUN but she slept all night in piece. She had about as many today but they have been giving her iv meds to calm things down. When I left her tonight she was feeling so bad. Her seizures have let up but she is retching and nauseous from all the meds in her system. She just can’t catch a break. The hope is she doing better tomorrow and will get her sedated MRI scan. I foresee us going home possible tomorrow but more likely Wednesday.

Hotel night for me equals a well deserved shower and a very comfortable bed. I suppose anything is more comfortable than the awful “bed” at the hospital. Back to the hospital in the morning.

Nathan is home holding down the fort. Hard to believe that he was in kindergarten when Katie has her first brain surgery and now he will be 18 in a few months. WOW! We have been faceTime’ing him trying to get Katie in a better mood. Her “Bubby” is her favorite human. She adores him but even he isn’t having much luck getting a smile on her face.

Thank you for the calls and messages. We really appreciate it. We feel the vibes and positive energy. More updates to come.

Posted on by A Laughing Matter · 2 Comments

Bell bottoms, Farrah Fawcett, a station wagon and baby Jesus

We set off for Knoxville August 1st with our U-Haul bursting at the seams. Billy has had feelers out for over a year in search of his next career opportunity. We drove up over the weekend of the 4th of July and scoped out the area and real estate. We went to one open house and decided to act sooner than later. The housing market is crazy everywhere. Considering the choices available that could accommodate Katie and be in the school district we wanted, our choices were even more slim….that said, we settled on “Grandma’s house”. When house-hunting for any length of time, the homes all start looking the same to me so we started giving nicknames to our potential prospects……hence…Grandma’s house.

Grandma’s house is a wee little, 3 bedroom/2 bath ranch that sits back on a half acre lot. The home was built in the early 70’s. Minus the rotary phone and shag carpet, the 8-track decade left its mark in plenty of other ways. I’m not complaining; overall, the home is very charming – also very brown with a hint of avocado green but then more brown. The green, low profile tub in the kid’s bathroom is pretty awful but helpful when getting Katie in and out of the bath. It isn’t perfect by any means but it works for now. It works until we build a home that better fits our needs.

Granted we moved from a 3 bedroom/2 bath ranch but the square ft is lacking a bit so we had to get creative in our use of space. I currently have canned goods and running shorts in our bedroom armoire that currently sits in our “formal dining” room along side a desk and printer. I have winter clothes in Katie’s closet, and a chest of drawers in Nathan’s room. Our kitchen has only a bare minimum of kitchen utensils, cups and dinnerware. Only 4 travel coffee mugs await you next to the Holy Keurig instead of 47.

So hand me the phone book, tether me to the rotary phone, and top off my glass of Tab cola ‘cuz here we are Knoxville. The Bradley’s have arrived. Ahhh…Knoxville. Good ol’ Tennessee…..Home of the free, Land of the brave, God-fearing, American flag-flying, believer in the Constitution and baby Jesus. So immensely refreshing. Deals are decided and sealed with a hug and a handshake. Many businesses are closed on Sunday. Doors are held open. Neighbors initiate introductions and wave. Boots are acceptable wear to worship.

The new job and new schools seems to be going well. Nathan didn’t get to start on Day 1 but it all worked out. He managed to get everything on his schedule he wanted. He informed me his second day of school that he has “never seen so many blond girls in his life”. Stand down, soldier, let’s pace ourselves. He says everyone is nice and there have been no school fights despite having just over 2000 students enrolled. Put some Jesus back in school and see what happens.

Everyone has been very helpful. We got to meet Katie’s teacher and the EC staff. She is one of 8 students in her class with one special ed teacher and 3 paraprofessionals. They do things a bit different here. The kids start out at the Primary school, then Intermediate, Middle and High school. The special ed students attend 8th grade for 2 years. I like this idea because middle school to high school is a big jump for these kids. We are thrilled both kids can get back to normal. They are back in the classroom. Katie gets to resume field trips and choir. If you take a quiet moment you can almost feel football season in the air.

The down side (there always seems to be one of those) Katie continues to keep us on our toes. She went almost 3 weeks without a seizure. I was so relieved but slowing they crept back in. The week we moved up til about a week and a half ago she had quite a few episodes. We have another medication in our back pocket to start next but decided to give the current one last push before throwing in the towel. She hasn’t had a seizure since the 18th. Fingers and toes crossed.

Before we go about our day, let’s talk about the Kroger here. Tennessee Kroger is gynormous. Gy-nor-mous! You can start off ordering a latte at Starbucks, get your covid vax, see a nurse for that relentless runny nose, fill your prescription, buy an outfit, buy a toy for your nephew’s birthday, organize your pantry with new storage containers from the household items isle and …..I’m forgetting something….oh yeah and groceries – they even sell groceries! You could spend all day there.

Well, gotta go. Time to take my rollers out, put on some frosted, blue eye shadow and pale pink lipstick, light up a cigarette and blast some Fleetwood Mac. Now let’s start up that wood paneled, baby blue station wagon cuz the kids ain’t gonna get themselves home from school.

Posted on by A Laughing Matter · 2 Comments

The Couch

We lived in our North Carolina home almost 18 years. Wow…how is that even possible? We moved to Charlotte from Texas about a year after we got married. Billy accepted a transfer. We put our townhome on the market which sold in 6 days. Six days. Now what?

We knew within a certain radius where we needed to be but had done no research. For the most part we just looked at a map, picked a part of town, loaded a moving truck, and moved across the country. No kids. No home. New city. New life. We lived in an apartment while our home was built. We didn’t have much furniture so we bought a house full….including two green couches.

Here we are years later. We replaced our AC unit and our roof a few months ago. What was fresh and shiny is now looking worn and dated. Don’t even get me started on the carpet. Yes, we actually had carpet in our living room…..dingy, worn, and discolored carpet. Worn from years of pacing back and forth with babies, chasing naked toddlers, and stained from spilled juice cups, years of dog hair and dirty shoes. That said, it was time. Good thing we sold and moved because we needed…a lot… updated paint, floors, updated cabinets and more. And of course, furniture.

A top furniture item to replace is the green couch. Our dingy, green fabric couch with matching loveseat and accompanying 62 coordinating pillows has definitely seen better days. If that couch could talk it would speak of the good days, the better days, the best of days, the not so great days and the absolute worst of days. So take a load off. Take a seat. Be still a quiet bit. 

Take a seat. Come this way. Our couch welcomes every day.

News of pregnancy announcements  shared. Babies nursed hours on end. 
Both naps and sleepless nights...it depends. 

The snuggles and cuddles with family held dear. Cozy date nights required and maybe a beer.

Hurry, grab popcorn and a glass of red wine. Family movie night has begun.
Mommy loves the one with the guy on the run.

Boys building forts and girls not allowed. Sometimes just one. Sometimes a crowd.

Charcoal mask on my face. Paint on my toes. Where's the remote? No one ever seems to know.

Read a book. Write a story. Phone a friend. 
Pay taxes. Check emails. Pay bills. Never ends. 

Writers nook. Make a list. What's for dinner? What to cook?

Stomach flu go away. Go sleep on the couch because you can not stay.

Seizures start. It's my turn to watch.
 You get tomorrow. We each do our part.

Tests results came back. Diagnosis made. 
Breathe deep. Say more prayers from where your head laid.

Work part-time if you have an interest. Instagram posts with lots of Pinterest.

Quiet devotions read. Just take a minute. Lazy coffee mornings with wine for the finish.

Carrying the weight of depression proves too much. 
Such is life. You can't love too much.

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Fingers and toes crossed

In my last update, I needed all prayer hands on deck. Katie was really struggling with seizures and side effects from medications. Change a med, lower a med, try a new med. Seizures. Exhausting is what it has been. Today, I’m tip-toeing softly with all fingers and toes crossed. The new medication zonegran (a hybrid of topamax) has been a game-changer. (knock on wood, sign of the cross, not spoken allowed….shhhhhh…) I know I sound dramatic but I’ve been playing this game of life for a while now and I say my prayers and hope for the best but must remain cautiously optimistic. If you have read even a third of my blog, you can understand.

In the month of May Katie had 31 seizures. Thirty one. She had been at 1 every 7-10 days prior so all this toxic medication levels, elevated liver enzymes….yada yada. On May 17th she had 6 that day and I was messaging the neurology nurse and working on a game plan. She started the new medicine and after about 3 days on it, she hasn’t had a seizure since. (sign of the cross..shhhh…) That said, we are still lowering the dosing of one of her meds that is still at toxic levels and we still need to wean another medication because we don’t want her on more that 3 seizure meds. I don’t want her on that much medication either. She is still adjusting and it seems like she hits a wall mid-morning after taking her meds. Yet, it is much easier to work through these adjustments without seizures.

Enough of that. We had a great, long Memorial Day weekend and celebration of Nathan’s 16th birthday. Lucky boy will learn to appreciate me giving birth on such an awesome weekend. Am I right? My in-laws came in town. We went go-karting, played arcade games, cooked out, ate out and his dad took him to the Nascar race. It was a great weekend. I know it is clique’ but I just can’t believe I have a 16 year old. WHAT?! I am far too young and hip to have such a grown son. He has really grown – transformed during the pandemic. He went from a scrawny “snack-size” to big “man-size” overnight. He went from 5’7″ and 120 lbs to 6′ and 180 lbs in the past year. For real, y’all. I now have to look at the jeans coming out of the drier to know if they are his or Billy’s. Crazy.

I have said this before but will say time and time again. Nathan is one special boy. Of course, I know I’m mom and he is my first baby but he is a pretty cool kid. He is loyal and kind. An old soul. Quiet confidence. Compassionate. Empathetic. He is now an incoming Junior. He is just a few checkboxes away from earning his Eagle rank in Boy Scouts. He isn’t sure what he wants to be when he grows up but knows it will involve cars. I know it will all work itself out. God has plans for him. After all, he has plans for the rest of us too.

Yet, here I am with eyes closed, fingers and toes crossed and head bowed. Prayers for continued relief from seizures and medication adjustments. Prayers for today. Prayers for tomorrow.

I’ve gotten pretty good at living in today. Today is now. Today is present. If you live in yesterday, you feel regret. If you live in tomorrow, you feel anxiety. Live in today. Live in the present. Live in now.

Posted on by A Laughing Matter · 3 Comments

The latest path…

I haven’t updated lately so I thought I would check in and ask for your prayers for Miss Katie. Over the past few months since being in the hospital we have been working through med adjustments, side effects and seizures. It’s been a lot. We decreased a med, stopped a med and added a med. Then seizures increased so we increased the med we tried decreasing. That said, the bloodwork showed her levels of that medication were still very high so we had to decrease it again. The good news is that she is able to walk more because her balance has improved (she was mostly in her stroller for several months because of side effects) but she is having more seizures.

I’ll try to cut to the chase. The likely and hopeful outcome of decreasing medication was less side effects but likely a few more seizures. Unfortunately we went from one seizure every 7-10 days to several a day. Ugh…

I had a virtual appointment with the nurse practitioner this morning. She started a new seizure medicine tonight. These things take time. We will slowly titrate the dose over the course of the next month, get labs again, and see where we land.

So, please keep Katie in your thoughts and prayers. Praying this new medication will give her some relief without any side effects.