Category: Daily struggles

The Medical Bell Curve – Where do you fall?

Published on by beatingcowdens2 Comments

Our healthcare system is broken. It is so desperately broken that I am not sure it can be repaired. But, I truly hope we are somewhere grooming a generation who will try. It is broken in so many different ways, but in the way we know best in this house, it is hanging by a very frayed and thin thread. And, truth be told, so are we. The question we ponder is what are we holding on to?

We have created sections, and subsections of care. I avoid the term “specialty” deliberately. We have crammed the status quo down the throats of exhausted and overworked doctors who are frequently jaded about their career choice before they have had the opportunity to size up the gargantuan pile of student loans they, or their credit, may never recover from.

Their jobs, at major hospitals have them double and triple booked for meager insurance payments. They are pushed to see more patients, and to do so faster. There is not time for inquiry, or for research for a particular patient. They are taught, “when you hear hoofbeats think horses, not zebras.”

And I get it – to a very minor extent. When I was in college I learned all about the bell curve, and how the vast percentage of the population, 68% fall within one standard deviation of the mean, or average. Which means the study of “normal” medicine answers whatever questions 2/3 of the population have.

If you take it a little further, by contending with some “odd” presentations, you have covered about 95% of the population by the second standard deviation, the bell part of the curve.

While this did not come off of a statistics site, you get the point.

What if you have a zebra? What if you are rare?? What if it is a way of life for you? Then what? Or what if you land in “mythical” and you have yourself a “rainbow unicorn zebra?” Do you want to know what happens then? “Medical Professionals” are so uncomfortable because you exist that they try to make you go away.

We live in a big city. We have always lived here. We have been dealing with my own medical challenges long before we knew of “Cowden Syndrome.” My girl came into the world a medical anomaly and little has changed. Except the unrelenting quest for answers brought us to a diagnosis of PTEN Hamartoma Tumor Syndrome, and hypermobile Ehlers Danlos Syndrome, and a Mannose Binding Lechtin deficiency, and and AVM in the knee, that on it’s own accounted for 7 surgical procedures, and one in the thigh, and a VM in each palm, and a lumpy thyroid that needed to be removed, and the same for the tonsils…. and…. and….

So, it’s summer. And while others are complaining about their jobs, we are doing ours. We are checking in with countless specialists as Cowden’s is a syndrome of constant monitoring. It is our job to catch cancer before it catches us. There are games I prefer. But, this is ours.

Over the years we have sought counsel from the most prominent, and the most “off the beaten path” doctors we could find in this city. And as my confidence grew I checked them. I checked their credibility. I learned more chemistry and biology than my 9th and 10th grade teachers could have imagined possible. I listened, I tried, I added and subtracted. And there grew a complex combination of prescriptions, vitamins, and compounded off label medications that make up a daily regimen in this house.

Do I have proof? No more than they do.

Monday and Tuesday we saw two of the best this state has to offer. One is a pediatric endocrinologist who looks at my child as a WHOLE PERSON. The other is an orthopedist who has seen her at her best and worst, and genuinely takes pleasure at helping her reach new heights.

Today. Let’s just say today I could have done without.

As a newly diagnosed PTEN patient Meghan was sent to a “specialist” who knew more of this disease. She was the one many of the others in our circle, (HUGE CITY, SMALL CIRCLE) referred us to as the guru. At the time she prescribed a medication that seemed to do a lot to slow the AVM under the meniscus of Meghan’s right knee. For a good stretch of time there was a respite from the vascular embolizations. We were on a good track. Then, there was that time she ended up in the hospital with a severe gastric reaction. It was assumed that reaction was from Celebrex, the drug with the off label properties that seemed to be slowing the progress of the AVM. Her esophagus was raw, and whether it was to blame or not, it was the likely culprit. I was cautioned we’d know within 6 months if it had been working.

Almost 6 months to the calendar there was a bleed in her knee that caused an emergency surgery. It was the AVM. And that time, enough blood sat there long enough to complicate a few more things. Had we been “Robbing Peter to pay Paul?” we would never know. The Celebrex left our life and knee surgeries resumed.

Hypermobile Ehlers-Danlos, undoubtedly an issue since birth, made nothing easier. The pain of constant subluxations was taking its toll. We added what we could to provide some relief.

Ella, the service dog joined us finally in January after a 3.5 year wait. Ella provides her own medicine.

But a few weeks back I thought, let’s revisit this PTEN “specialist” from yesteryear to see if she could offer advice on an off label treatment for the newest AVM in the upper right thigh, dancing with the sciatic nerve, too deep to remove, deep enough that the effectiveness of additional embolizations are questionable.

Her office insisted on new scans, and MRI/MRA with contrast prior to the visit. We had to schedule them both the same day as the office visit so we could discuss the new scans.

So, for the third time in 4 days we left for an all day medical journey. We left at 9:15, started the scans by 11, finished by 12:15 and waited till 12:45 for the CD which, even though they told me I didn’t need, experience has taught me that, yes. I do.

This was the first time, after well over 40 MRIs that Meghan was in the room alone. Ella was mine to care for in the waiting room. Mixed emotions everywhere.

The pouring afternoon rain showers seemed to add to the gravity of the day.

Having not seen this doctor since 2014, we caught her up on the surgeries since then. She is new to the facility we were at, although not new to the field. She immediately began to question well researched decisions made by a doctor who left the facility last year. The hairs on my neck began to stand.

She knew we were there about the AVM in the thigh, and we were looking forward to hearing her take on the scans. Imagine our shock to learn the images mean nothing to her, and we were waiting for a report that was not destined to arrive that day.

She reviewed the medication list and openly criticized it. But, she would not speak to what she thought was excessive. In a few sentences she managed to demean and demoralize. We asked about medications for AVM, and she mentioned one we are well read on. But, she then dismissed it because Meghan will be at college next year. “It is hard to monitor. I don’t monitor it. There is another doctor who does it. And I don’t know if you’ll be able to do it remotely, or if you can even get the blood work in Pennsylvania. Plus, we don’t even know it works.”

We asked again about the Celebrex, but she was reluctant to try it again.

At which point Meghan, who had been so quiet, let the doctor know she was instilling zero confidence with her list of “maybe,” “possibly,” and “probably not.” Meghan was accused of seeking pain medication. Which she was CLEARLY not. Trust me. This kid values above all things having her wits sharp.

I expressed our frustration with the carousel, or rather the teacups is a more accurate description of this ENDLESS ride. As she began to mention more doctors I shuddered. I asked her if she understood the physical, mental and emotional toll on the patient. I asked her if she understood by the time we leave appointments like this we are unable to accomplish much. Hours in traffic and the emotional turmoil of more questions than answers, we are exhausted.

She felt compelled to remind me that the process is slow, and I must be patient.

Again, I am not in a small town.

I am in a huge city. With great insurance. Which is useless because I can’t seem to get much covered anywhere but here. And who wants to see us anyway?

She made sure to remind me the hardship it is to take on Rare Disease patients. She reminded me about the paperwork. Yep, I know.

I reminded her that I have pretty much lost track of all casual contacts trying to keep my head above water.

Either she didn’t understand, or she didn’t care. She was too busy telling us Meghan is a success BECAUSE of doctors like her. I guess, technically she’s not wrong. Meghan is a success and will continue to be her best self because she knows she wants to DO BETTER and to BE BETTER, for all the Zebras, and the “regular” people too. So yes, she is a success, not because of those like this doctor, but in SPITE of them.

I’ll mail the CD to the ortho. In case we have something we have to do. In the mean time I will continue to teach and empower Meghan to manage her care as best she can. She is amazing. She never stays down long.

What are you doing this summer?

We will be here…

#beatingcowdens

Beating Cowdens – Ten Years 250K Hits, and Counting

Published on by beatingcowdens7 Comments

Spoiler Alert- Rare Disease DOES change you

I watch the traffic counter on our blog click real close to 250,000. A quarter of a million hits on little excerpts of this messy road. It blows my mind actually. I may never understand why people read. But, I do know why I write.

Ten years ago someone nudged me to tell our story. I told them there was no story to tell. Except in reality there was. My undiagnosed kid, my medical mystery, had gotten her diagnosis at the age of 8. The pieces started to make sense. And, my diagnosis followed later, connecting more dots, and solving some long standing questions.

So in May of 2012 I jumped in with both feet. I typed. I hit publish. And I never looked back.

Through the years people questioned whether it was wise to tell Meghan’s story before she was old enough to tell it herself. They didn’t realize she was telling it; hosting fundraisers, speaking at events, and even being honored as a 2016 NYS Woman of Achievement. She has also always said she would do it all again if it could help this complex diagnosis make sense to one person, to one family. If it could give someone hearing “PTEN Hamartoma Tumor Syndrome” or “Cowden Syndrome” for the first time, an image of people living with it, living through it, and doing their best to make life happen, then it was worth it.

Because really, at the end of the day, what we all need is hope. Well, hope and one or two rock solid internet support groups.

When we were first diagnosed Meghan’s therapist liked to tell her not to let Cowden Syndrome “define” her. She had an active Arteriovenous Malformation creating havoc in her knee. He had her draw a smiley face on the knee to imagine the pain was gone. He didn’t last long after that.

The truth is, that between us there have been over 30 surgical procedures since 2003. The smiley face on the skin, well, it doesn’t help.

What helps is determination, faith, tenacity, prayer, and support. Because being friends with people who are always in the operating room, or in the middle of surgical recovery, or medical drama, is exhausting. It seems they are always talking about something medical. It seems they are self-absorbed.

People say “don’t let it define you” because it makes them feel better. Maybe a more appropriate sentiment is to be cognizant of how it changes you. Because if you are just starting your journey I can guarantee you one thing. It will change you.

I mean a decade changes all of us, right?

The thing is when you are in the middle of the ocean, trying to avoid the sharks, it’s so hard to focus on anything other than swimming for your life.

Everyone has their own lives though. Everyone has their own crises. Everyone has their own problems. Yours seem constant. They are hard to keep a handle on and they can drive away even those with the purest of intentions.

I used to have hobbies. I don’t really exactly remember what I used to do. But I am sure I did.

I used to go places. With people. For fun.

But, now I often survive. And most days that is plenty.

There may be time to figure out those hobbies again, or to reconnect with those people. The 8 year old is turning 18 and is off to college in a few short months. Life keeps moving.

So 10 years into this blog, what are my take aways for a new family reading?

It will change you. Check yourself.

Enduring life with a rare disease can make you:

Angry or kind

Miserable or compassionate

Self- absorbed or philanthropic

Question God, or praise Him

Isolated or connected

Overwhelmed or focused

Complacent or driven

At some times in the last decade I have seen each of the above in me. I never made the decision to bring Cowden’s Syndrome into our lives. It did change us both.

Last week Meghan mailed out Thank You notes to people along her educational journey, from her elementary school paraprofessional to her high school principal. These people changed her for the better. She, from a life of medical struggles has learned that kindness matters. We say, “No kind word is ever wasted.”

Today Meghan left a training session at a local gym to tell me her trainer has a child with vascular malformations like the one in her knee. She gave him the number of our genetecist.

We learn to use the situations we are in to push the limits of what we are able to do. We hold our faith close.

Our identity as rare disease patients is tightly interwoven into the fabric of who we are and who we continue to become. But, even within the diagnosis there are choices. We can not control what happens to us. We can only control what reaction we have.

As a dear friend once told me, “When God closes a door, praise Him in the hallway.”

We remain #beatingcowdens

Two Valium and a Swig of Wine-because sometimes deep breaths are just not enough.

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It has been that kind of a week month YEAR. Life continues to happen at a pace that has me barely keeping my head above water. I often feel like it’s a dance around the land mines. All day. Every day. Mostly I make it.

Tuesday I went to a high end NYC orthopedic hospital to continue the journey to diagnose the foot injury from hell. I taught my 27 fully remote 4th graders until 11:30 and took the afternoon off. I traveled in for my diagnostic nerve block. If this nerve block eliminated my foot pain for 6 hours, we would be closer to eliminating it forever. At least in theory. (Spoiler alert- NOPE, that wasn’t it.)

I arrived home from the procedure at 3:20 with instructions to log my pain hourly until 8:30. I was also to walk several miles during that window.

Except, April, our sweet as anything oldest girl hadn’t been feeling too good in the morning. Food had been tough for a few days, but normally I could cajole it into her. Not so much that morning. So, I wasn’t messing around and I opened a can of chicken salad from Costco. The smell would have had her jumping in place. Except I had to bring it to her. She took a bite or two and turned away.

I called the vet, pleased that our favorite was on call. The description of “distended abdomen” prompted “bring her in now.” He knew April well as he had set us up for her surgery just this past March. I paced the parking lot in between his calls.

“I’m worried. Her belly is hard. I am afraid it’s a tumor, but I want to be sure.”

“Yes, you can take x-rays.”

More steps on a foot that was anything BUT numb.

“It’s not good news. I see a large mass, possibly connected to her spleen that seems to have burst. Her abdomen is full of fluid. There is not much we can do except keep her comfortable.”

My head. My heart. My April.

April was the MOST GENTLE girl.

Two hours later she passed peacefully in my arms.

I collected her leash and collar, and whatever resolve I could muster.

That was fast. They all hurt. This one had hurt coupled right alongside shock.

April, my girl. She was by my side during my foot injury and in my 4th grade “classroom” every day this year. April, who saved Lucky who unraveled after the sudden loss of her companion Allie a few years back. April who took to Jax immediately. April who joined us through a bizarre adoption on a January Tuesday in 2015, had quickly left on a May Tuesday in 2021.

I was home barely long enough to put her leash down before I had my sneakers on to torture myself through the approved number of steps to complete the failing foot experiment. No time to pause. Game face.

I asked why it feels like we are living life on the Indy 500. No one had a straight answer. Clearly we are traveling above all posted speed limits with poor safety restraints.

Cowden’s has been largely minding it’s business for now, and after some sloppy surveillance, with covid seeming to be in retreat, we are getting caught up with regular screening.

And, with every appointment comes the question of how they will monitor Meghan while she is in college. We are trying to make real plans to stay on top of things, because Cowdens doesn’t take vacations. I believe it takes naps. But, not extended vacations. And college. Yep. Sneaking right up on us.

The psoriasis in my ears isn’t linked to Cowden’s. I don’t think. But it does add some more doctors to a very full plan. Plus, it’s itchy. And gross. BLAH!

Senior year? Nah. Not really.

Meghan will be confirmed in the ELCA Church in Plainview where my brother-in-law is the minister this coming Sunday. That is a happy day, a long time coming.

They promise me graduation will be some time late June. I’ll take it as it comes.

For now, the usually low maintenance medical one in our house is looking at oral surgery for a raging infection in his mouth. This following 5 days inpatient with Covid in March and he’s becoming a contender for appointments of his own.

“I’ve tried to take things one day at a time, but lately several days have attacked me at once!” was a sign that hung in my parents house for many meaningful years.

This year has been unlike any other with its own set of unique challenges. Yet, I don’t remember the last time it was “calm.” You probably don’t either.

Today I finished school on time. I am set up for Monday. I haven’t had many weekends this year. Usually during a school year this feeling of being settled in comes around Halloween. We’ve got 5 weeks left.

Today I went to the cemetery to clean up my Dad’s grave. It needed a little TLC. I swung by my grandparents at another cemetery and thought about how much I miss them all. Time keeps moving.

Joy. Sadness. Laughter. Pain. Chaos. WIns and Losses.

Ferris Beuller’s Day Off 1986

And that my friends, is a little tiny, carefully edited piece of how the title came to be what it was.

Hang in there, all of you.

We’ll be here

#beatingcowdens

We also have wine. In case you come by!

Covid in the House

Published on by beatingcowdens5 Comments

Sometime early March I had decided I was going to schedule a vaccination against Covid-19. I am not sure what made that decision crystalize. I have been teaching 4th grade remotely this year, deemed “high risk.” I have spent a large portion of the last year in my house. But, not the whole year.

I have ventured to grocery stores, and even to visit a handful of family members. We took a cautious trip to Indianapolis to pick up Ella in January. But, largely my winter coat is barely dirty and my biggest excursions were around my first floor, or to play chauffeur.

The decision to take anything, a medication, a supplement, or a vaccination, is never made lightly here. We have seen the real effects of all things on our bodies, and we are cautious. We walk a fine line of risk/benefit analysis which can be exhausting.

I live and work in a suburban community near the heart of New York City, where the rules keep changing, conspiracy theories run amok, and liberals and conservatives are often so focused in their own views that no one sees a middle ground. I live in a city that a year ago rushed to close everything, that never tried a gradual opening, and now, a year later sits with numbers that are pretty much exactly where we were last year.

Numbers that if you ask me, are still disturbing.

We are exhausted. We are in dire need of normalcy. On this my neighbors and I agree.

So, as the weather started to show signs of spring and I drove past droves of unmasked clusters of people everywhere, I committed. I understood then that for me, the risk/benefit had been decided. I would get the vaccine to try to protect myself from what felt like inevitable exposure as local numbers continued to climb.

I have long since given up rational conversation on this emotionally charged, over politicized, yet very real health issue. You might be surprised in a conversation with me to learn where I stand. You might assume you know. You’d likely be wrong. But, I digress. If you ever want to chat it out like grown ups, we will FaceTime, or zoom, or sit on my deck. Whatever you’d like.

But, like all of the best laid plans, my plan to vaccinate came to pass a little too late.

As I was seeking an appointment at a site closer to my house, I came to learn that securing an appointment for a vaccination rivaled seeking concert tickets for my favorite artist back in the day. I kept it open in a browser window for almost 2 weeks.

On March 12th I was 6 days into a self imposed “Facebook Break,” exhausted by the some of the drama I was struggling to scroll past. And, if I might add, just generally exhausted.

Felix came home from work that night and just did not look well. He was a little warm and tried to tell me that he had a bit of food poisoning from a bad turkey sandwich. I sent him to bed with 2 tylenol. He asked if I was coming. I carefully set my bed up on the couch. I knew. I just knew.

By the next morning I arranged a covid test for him and was far less than surprised when he was positive on the rapid, and already symptomatic. Meghan and I tested negative later that day, with a PCR sent out to be sure. He alerted his shop that he was positive and would be out of work 10 days. We set ourselves up to quarantine. I was internally terrified.

We geared up with lysol wipes, hand sanitizer, double masks and the like. We separated as best we could. And, even as no one in his shop came up positive, he was certain NYC Transit was likely his exposure spot, as unavoidable as it was. He was doing ok. We thought it was going to pass through as no big deal. Right through Monday we were even ordering dinner.

Tuesday Meghan didn’t feel well. Aside from some minor stomach upset I was feeling well. But, I decided to take us both to be tested again. As we were waiting for the rapid, the initial PCR came in negative. And, almost as soon as I was swabbed my rapid had a positive. Meghan’s followed a few moments later.

Tuesday night, we called the doctor for Felix. But, they don’t see covid patients. They don’t have video visits. Just a phone call. They ordered a lab panel. But, the earliest appointment to get the labs drawn was still a week out. No one was willing to help. They wouldn’t give him any meds. We were on our own. Maybe I should’ve known the office would respond this way. But, I didn’t. And honestly, 10 years into this rare disease world, my expectations of the medical community are quite low. Sadly, often with good reason.

Tuesday, Wednesday, and probably Thursday I cried an awful lot. This is the kind of thing that everyone wants to “help” with, but you can’t bring a single person anywhere near you. As I yanked on my big girl pants and did my best to keep things together. I shortened my day and taught my class each morning, figuring I needed them as much as they needed me. Plus, there are no subs in this remote world. So, I thought moving all that air around just might help my asthmatic lungs.

Meghan slept most of the time and she and Felix felt terrible. By Thursday though, youth was winning and Meghan was coming around. Felix, on the other hand seemed worse. He just couldn’t get around much at all. He was having a hard time eating just about anything. He was having a hard time walking from the bed to the couch.

In the spirit of keeping things interesting April, our older dog had surgery on Friday the 19th. It was a full disclosure surgery with next to no exposure on hand off Thursday, and pick up Saturday.

I can not begin to recreate the weekend. It just happened. One minute at a time.

Maybe I should have been afraid earlier. Maybe I should have pushed earlier. Maybe our doctor’s office should have stayed in touch. But, eventually we knew what had to be.

I brought Felix to the Emergency Room on 3/24, 11 days after his positive test. That was a hard ride. I left him with his phone, a charger, and a copy of his health care proxy paperwork. I pulled over to gather myself a few minutes outside of the facility and he texted me he’d be there “at least a few days.”

I heard a lot of things in my ear the next few days, the most helpful came from my pastor, my brother-in-law, who by virtue of this remote world has been able to fill both rolls for us here. Mostly though, Meghan and I just functioned.

The fear had been for us. The fear had been for me with my asthma. The fear had been for Meghan and I with our Cowden’s Syndrome. The fear had not been for our larger than life Felix. The one who NEVER EVER got sick. And yet, there was the world, on its ear.

Felix came home on Palm Sunday. We will all get more lab work than usual the next few months. We will hope this thing is not going to stick around to make life more complicated. But, as with all things, you just never know.

So, this virus is not nothing. That we can tell you.

What to do with that information is really not an easy thing. Nothing is linear. There are no simple answers.

What I can tell you is that it looks a lot different inside your house.

It was hard to tell our parents we weren’t doing ANY indoor gatherings right now. It was hard to tell them we were not adding any more risk into anyone’s world. It was hard. It was uncomfortable. Because we had gotten VERY comfortable taking few, if any precautions with our families. Fortunately, it worked out. I shudder to think…

We are exhausted. We are healing. We are grateful.

We believe in God. And we believe in prayer.

And I can tell you this virus, however you want to feel about it, is a potentially deadly weapon.

We won’t be clear for our vaccines for a few weeks.

We will be on line and ready. Because if this thing comes after anyone I love, I HAVE to know, I did EVERYTHING I could to stop it.

I can tell you for sure after Covid in the House – it is a different perspective here….

Happy Easter folks! And, nope, we do not iron when we’re home alone! 🙂

#beatingcowdens

Remote Teacher…

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My heart aches for the kids.  Everything about my mom self is so painfully aware of what they have missed.  There is no age group, from Pre-K to College, that has not suffered great loss.  I have no answers.  I have only thoughts about children in their living rooms, staring at screens, and thoughts about children learning masked in gyms and auditoriums.  I hurt for their parents that had to decide which horrible option was better, and for the kids who fear things that are too heavy to be carried on young shoulders.

I cry real tears for my senior. My class of 2021 girl who has no real way to celebrate her full scholarship to a private university.  There have been 12 days of school, since March of 2020.  There will be no prom. I am not sure that there will be a graduation.  I find it unlikely there will be a yearbook.

Global pandemic.

I get it.  I truly do.  Nothing is as it should be.

But, I have to talk about something we don’t talk about enough.

We are angry. We are looking for a place to but blame.  So we throw it around anywhere we can.  And often.  Way too often. It lands on the teachers.

I know.  Before you stop to tell me. I know.  I know about the teacher who logs on for 30 minutes a day.  I know about the teacher who doesn’t know her student’s names.  I know about the one who is in Aruba.  Teaching on a beach.  I know.

But the ones we don’t talk about are the other ones.  The dirty little secret of the educational debacle that is this pandemic.

There are so many teachers that have gathered all their resolve and put themselves in front of a camera every day.  There are teachers who sit at that camera from 8-2 with minimal breaks, and then turn the camera off only for the real work to begin.

Sometimes we need to talk about the teachers who had a change of assignment so drastic they had to relearn curriculum for things they haven’t taught in over a decade.  Those are probably the senior teachers. The ones that don’t cause trouble. The ones everyone is sure can handle everything.

Those teachers probably began the year with student copies of books that their kids don’t have. So they can take pictures and post slides for the kids to follow along, while they lecture students on things that really will only sink in when they are demonstrated, touched, and played with.

Those are the teachers who didn’t know what Google Drive was.  Who taught themselves through YouTube videos.  Those are the teachers who then taught the kids to navigate a digital notebook. In a house where they aren’t allowed to print.  And no one is home.  And their grandparents want to help, but they don’t know what to do.  And the language barriers preclude even a conversation with an adult in many cases.

Those are the teachers setting up science experiments at their desks.  Under a subpar document camera they bought on Amazon while creating google forms, and slides of everything.

Those are the teachers who are trying to make things easier for the kids while checking on the mental health of those same kids, which their heart and their mind and their soul and their eyes tell them is failing.

Those are the teachers setting up virtual classrooms and trying to motivate kids in any which way they can.  Those are the teachers who feel like they are teaching in shackles.

Those teachers.  The ones trying to make it ok, they hear you.

They hear you when you talk.

They hear you when you say to stop paying the teachers.  They hear you when you malign and belittle an entire profession for the sins of a few.  They read the words because they are so cut off from people.  Until they sometimes have to just turn off the news and the social media and isolate themselves further.

They hear you.  They see you.

They don’t answer you.  Because they are sitting.  At their computer.

Ignoring their health.  Many are where they are because of very real health issues.

They are tired.

They are neglecting their families.  And doing what they can to save the children in their care from the loss of an instructional year.

They are there for HOURS.  Reading the words your children type. Providing the feedback your children need.  EVERYTHING takes FOREVER.

Those teachers are hurt.  And they are hurting.  They are in an impossible situation.  They are lonely.  They are alone.  And they will not give up.

They would not want that for their own children.

They got into this profession to do better for the children.  All of the children.

So I will leave you with a message from all these teachers.  It is the same lesson we are giving the children.  But, I think the grown-ups need it more.

Be kind. Always.

You know that teacher who you are really grateful to have in your world right now?  Reach out to them and tell them.

Trust me.  They need it.

They don’t need money.  They don’t need gifts.  They don’t need fame.

They need to know that their work matters.  They need THAT fuel.

And, please.  Stop.  Think before you speak.  Or type.  We are all that we have.

#beatingcowdens

And it’s a…Hernia!

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Now that I have your attention, I promise, you’ll get to the end of this episode of “You Can’t Make it Up!”

The day started with another successful training for Meghan and Ella at Barnes and Noble.  They are ready for their Public Access Test, and I am optimistic they will do well together before we get on the road to return to New York tomorrow.

We waited over 3 years for this dog.  There were many days we thought she was not meant to be.  There were honestly more days of feeling defeated than hopeful.

Early in the process Meghan interviewed via FaceTime in my car, before a swim meet, with Jennifer, the owner of Medical Mutts.  During the process we worked with Eva, director of client services.

Early in the process Meghan read everything she could get her hands on.  As the years went on she put the books away until they gathered dust.

In between there were countless emails between myself and Eva.  There was always a quick reply, and kind reassurance.  Although as I travel back through three years of email I can see more clearly now where there were some lapses in our communication.  Meghan is a very different human than she was in 2017.  Because of that, her needs changed.  At one point her dog was to also be capable of mobility assistance.  Over time, we dropped that piece as her legs got stronger. The one thing, the biggest thing that never changed, was TOUCH.

Meghan needs to sleep holding something she can feel breathing.  For a while it was me.  Then I was able to sub in some dogs, first April, then Jax.  The biggest thing, the first thing we wanted a service dog for was the sleeping.  A dog to sleep with her, and to help her wake to an alarm, would give her the first major steps towards independence.

During this past week many things have become evident.  Some were expected, and others unexpected.  Some were awesome, and others were just not.

One thing that has been solidly evident is that Ella’s trainer, Michelle, is true to her word at all times.  Michelle did not present as warm and fuzzy.  (Actually her intelligent, focused presentation reminded me a great deal of Meghan.)  She has proven to be awesome, and utterly effective.  As the week has gone on every thing that Michelle said she taught, every single behavior has become evident.   Michelle has gone above and beyond this week to make sure that Meghan and Ella pair effectively. She has come to the hotel to practice elevator and long lead walking. She has met us on her days off.  She made it her business to meet up to being Ella closer to the touch Meghan needs.  Today she brought a blanket for Ella, talked through a plan with Meghan and once again amazed me with her genuine sincerity.

Michelle taught all she was told to teach.  And I’ll leave that right there.

Somewhere there was a breakdown in communication above her that led to confusion on Meghan’s needs.  It could have been due to the length of time, or the changes.  It could have been a mistake.  It could have been any number of things. But it happened.  Meghan will succeed building the rest of the behaviors Ella needs.  Over time.

And to some extent that time is normal.  No service dog team goes home fully functional. They need to learn each other. It is an arranged marriage where the partners need time to learn what generates happiness in the other.

So while we have mixed emotions about a bunch of things, HOPE prevails.

Even today.  Today I spoke to Jennifer, the owner, for the first time since 2017.  I spoke with her out of necessity.

By the third night we had Ella she was allowing touch.  It didn’t take Meghan long to point out the lump in her side.  We mentioned it. We were told to wait.  We mentioned it again.  Attempts were made to explain it away.  We mentioned it again and finally today we were connected to their veterinary facility.

The vet said it is likely a hernia.  He seemed unaffected. After a physical exam, and quite physical by Meghan’s description, he told Meghan to massage it, and take her to our vet if it got worse.

That was the icing on a slightly undercooked cake.

I spoke with Eva, who directed me to Jennifer. And that is how we ended up back on the phone today.  Odd bookends to this experience, really.

I received the reassurance that Ella  had been thoroughly checked by their vet.  I internally contemplated his ability to be thorough.  I was promised that the facility will pay for any medical bills related to the hernia diagnosis.

Ella meets our vet on Sunday.

This is not exactly the homecoming we were hoping for.  Maybe our vet will see something different, or be able to offer some reassurance.

My mind can’t go too much past that.

I’ve got three years to reflect on, a public access test to cheer my favorite team through, and 750 miles to drive before we introduce Ella to Jax and April.

We will continue to take this journey, as we have done so many others, one day at a time.

Ella, you’re one of us now.  Hernia or not, whatever comes your way, we’ve got you girl.

#beatingcowdens

 

Puppy Steps

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It was a walk. Outside. On the long lead. And it went really well. Not perfect, but so very much better. The distractions are still a little disconcerting, but her focus and response to Meghan is improving all the time.

I am bothered that she doesn’t use the elevator, a problem compounded by our 4th floor room, Meghan’s nine knee surgeries and my very painful, swollen foot. And yet, I am super pleased that she trained today on the floor near the elevators, a floor she wouldn’t walk on days ago.

Her sporadic barking is a bit troublesome. Her trainers have told us it is the hotel, and noises we can’t even hear. I don’t love it, but they’ve been right on so many things this week. This week has been a huge learning experience. Yet another time in life where nothing is quite as you planned or expected, but there is a cautious optimism in the air.

I really expected when we got here that this Ella girl would hop right into bed with Meghan, and wake her up on cue the next morning. I did. I figured the leash would hand off and she’d be ready to do all the things Meghan needed. I expected she’d potty on command, and quietly tuck into small spaces. And I was upset when it didn’t go down that way at all. From learning to walk in sync, to finding the right spots for her to pee, it has been a labor.

I know lots of things. But sometimes it’s hard to accept that I don’t know ALL the things. Preconceived notions can be the undoing of many of us, and I am no exception. I did not realize at all that “Team Training” would mean that the dog and Meghan would be learning everything together. It actually makes sense. Ella is not a machine. Dogs don’t fit into “boxes” anymore than people do. Ella learned to work with Eva, and with Michele. Now, she needs to learn to work with Meghan.

Every time we have changed jobs, or bosses, we have taken with us the skills and work ethic, but had to tweak the way we performed. As the week has gone on it’s become evident that Ella was extremely well trained. She also works hard for really good food. As Meghan and she get to know each other, Ella has begun to transfer her learned behaviors and execute them with Meghan.

I was not totally sold on positive reinforcement training. I mean, I guess I used it to raise my kid, but certainly not with cheese and hot dogs! However, I have watched it work this week. And while I have no desire to train my otherwise happy pets like this, I see it’s value.


Tomorrow they practice, and Meghan gets to ask the rest of the questions. Well, the ones she has thought of already… I do hope they are prepared!

Tuesday she takes her public access test and we get on the road with our “plus one” for the 750 miles back to New York. This team has a lot going for them. Ella makes my girl laugh. The way the dog looks at her warms my soul. It’s like Ella understands she’s got someone really special in Meghan, and Meghan feels the same about Ella.


There are things that aren’t ready yet. We know there are no promises in life. We know it all too well. We are preparing to end the “Team Training” with tons of answers, lots of unknowns, and a giant pile of HOPE. I guess that’s about the best any of us can ask for!

Keep these two in your thoughts as they make “Puppy Steps” forward.

#beatingcowdens

Easy is for Amateurs

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I knew it wasn’t going to be easy. I did. I just didn’t realize it was going to be THIS hard. I mean, maybe I should have. Easy is for amateurs after all. But, I didn’t realize it. And as a direct result I am just coming back to life after a week of anticipation, frustration, exasperation, disappointment and despair, because finally we have settled into HOPE.

There are so many things that are not quite as we expected. Some, because we did not ask the right questions, and some because the questions could not have been anticipated until we arrived. Yet other things were not as we expected because so much time lapsed from contract to “Team Training” that some of the things we were seeking most seemed to have gotten lost in translation.

The trip, all 11 hours and 750 miles was nothing short of exhausting. We ended it with a stop at Whole Foods before parking in the ice covered hotel parking lot. We promptly found someone to help, and paid a generous tip to have our car emptied to our 4th floor room while we waited out of the way of the black ice and the unwelcoming bite in the Indiana air.

We had a hard time resting that night, thinking of the union over three years in the making, that was finally only hours away.

When we arrived at Medical Mutts there was a warm welcome from Eva, and there was Marvin, the friendliest cat I’ve ever met to sit with us through paperwork. Michele, Ella’s primary trainer, came with Ella, and while there was excitement, there was hesitation throughout the room. There were no “fireworks” and no “Here Comes the Sun” playing, as I had anticipated so many different times before. There were casual greetings, and obvious work from everyone, human and canine, to try to figure each other out.

That is the part you don’t think about before hand. Or maybe you do think about it. But, then there is the difference between thinking about it, knowing it, and experiencing it. Ella is not a computer to be programmed. She is a dog. And for all the reasons we love dogs, she is a dog. She is also a highly intelligent, and extremely well trained dog. The former, her intelligence and even her ability to be trained are innate. Her training though was very much a labor of love.

Medical Mutts saw promise in this girl, a stray from the streets of Tennessee. They took her in from the rescue that had taken her off those streets. They brought her to Indiana and loved her. They worked with this beautiful girl knowing that she would one day become someone’s partner for life, and give them just the independence they were so desperately seeking. It is the whole reason this facility, these people, were Meghan’s focus years prior. The beauty of taking the unloved and abandoned and giving them value and purpose, that is the real reason we ended up here, at THIS facility.

I guess I just hoped, that it would be easier. But, easy is for amateurs.

Ella’s primary trainer was Michele, a well-spoken, professional and knowledgeable woman. When she first greeted us I found her a bit aloof. In less than two hours I realized she had put a good deal of energy into Ella and was protecting her best interests. She was trying to figure out if Meghan was going to give Ella the life she deserves. In less than two hours those two understood each other and I watched aloof become focused and driven to ensure she transferred all her knowledge of Ella to Meghan.  I watched she and Meghan connect, like minded in many ways, and both were keen on making this union successful.

They worked Monday and the progress was spotty. Ella came with us to the hotel that night and all of us were in for an adjustment. We expected a dog who would hop on the bed and cuddle. But, Ella wasn’t accustomed to touch. My mind was a little blown, as we had sought this dog largely to sleep with Meghan, soothe her through nightmares, and wake her in the morning.

Tuesday they met again, and worked on some behaviors. My mind traveled from confused, to furious as I silently boiled at the thought we had waited this long for a dog that lacked what we had asked for in the first place. Further, she was distracted and needed seemingly constant redirects. When we entered the mall and both trainers seemed stunned at what they saw, I actually took a walk to choke on my tears. How after all this time could this be what was happening?

When I had originally looked at the schedule I was irritated that we had an off day Wednesday. I needed to go back to my life. What was this “off day?”

And then it was Wednesday. And I understood. It was a huge pivot in the journey. Meghan and Ella had some fun time. Ella stayed on the bed, and even let Meghan touch her. Ella played. She rested. Meghan got some confidence. They began to connect. It was so much slower than I had planned in my mind, but so few things ever go according to plan, I knew that often the best things came out of the detours.

There hasn’t been a day that we have not felt the full gamut of emotions. We’ve laughed and cried and screamed and yelled. We’ve giggled and cheered. We’ve passed out from exhaustion.

This morning Meghan and Ella had successful outings to CVS and Barnes and Noble. And I mean, really successful. They did the best team work I have seen so far. We came back to the hotel to playful “zoomies” and another training session with Michele.

And then tonight there was exasperation on a trip outside.

The pendulum is relentless. But every swing seems to leave them closer to being a functional pair. Ella is asking for contact. Meghan is reinforcing at rates that keep her interested and focused. They are growing together.

The weekend is for resting, playing and some informal sessions. Monday we brush up. Tuesday they take their public access test before we begin the journey home.

Tuesday is not the end, but another beginning. There will be so many beginnings in this journey. And maybe that’s the point.

Nothing in Meghan’s life has been as we planned. And not much has been easy or smooth. Yet every single step has brought us to places we’d never imagined possible.

Easy is for amateurs.

Meghan and Ella you’ve got this!  Let the journey continue.

#beatingcowdens

Here. We. Go.

Published on by beatingcowdens5 Comments

It’s just after midnight on Sunday, January 17th. I should be sound asleep, but instead I’m propped up in my bed with my iPad in hand. There are suitcases in the living room and a cooler of food and other supplies set to go. In about 6 hours Meghan and I will embark on a 12 hour journey to Indianapolis.

The story of how we got here anxiously waiting to get there began years ago and is intricately interwoven within the journey that is #beatingcowdens.

I have written a great deal through the years about Meghan’s physical struggles. I have been more guarded about the emotional toll this disease has taken. There is too much to the journey to pretend I can create a linear summary of how we ended up here.

The contract for the service dog was signed in November of 2017. A good few months of soul searching came directly prior. Meghan, like always, seemed to know what she needed. I had begun to learn by that point that she was more often than not, correct.

She was a high school freshman, and in between panic attacks that left her calling me from stairwells and bathrooms in the middle of both of our school days, she researched service dogs. She was most impressed by Medical Mutts, a facility in Indiana that rescues dogs and trains them for service. This was a fit on so many levels. We are a dog rescuing family, believing strongly in the beautiful bonds of adoption. We hold nothing against breed to train facilities, but for Meghan, the one who always felt like she was just outside the circles of life, watching as others participated; the idea of not only working with a service dog, but working with one from a shelter, who was left there because they needed someone to love them, well that was pretty much perfection.

The interview took place in my car. we were outside of her high school during her freshman swim season. The interview went well and it was agreed that Meghan could be placed on their list for a dog. A deposit was made. And then we were left to wait.

But, even as we waited, her depression and anxiety did not. She met with a doctor at NYU who was willing to put a name on the PTSD – Post Traumatic Stress Disorder, that Meghan was living with. There were specific triggers in her medical history that stayed right at the heart of her soul and her psyche, despite a years long relationship with counselors. And it was messy to try to understand how all that medical trauma, alongside some emotionally damaging classmates left her feeling as though she was free falling without a parachute.

When chaos is your norm, and “fight or flight” is not a passing stage, it can make it hard for people to be around you. It seemed there was always something new on the horizon – whether a new diagnosis or a test or a pending surgery, it was ALWAYS something. The amount of hours spent at medical appointments, testing, surgery, recovery were at times all consuming. These are simply facts.

I think the idea of the service dog solidified in the nights. Meghan is adept at pushing through the day. With Cowden’s on your mind, and Ehler’s Danlos playing cruel games with your body, there is scarcely any way for your mind to focus on more than surviving. But at night, it was a whole different world. Settling down in a dark room, falling asleep, reminiscent of countless trips to operating rooms where you wondered if you’d ever awaken, was not an easy task. I spent many nights on a couch in her room. Many nights settling one of our dogs onto her bed so their rhythmic breathing would soothe her to sleep. Many nights watching the nightmares and the hours of restlessness that circled itself into fatigue that rarely quit. And by the time she settled into a restful sleep, there was no waking her. To this day, alarms blaring do little to even cause her to stir.

The medication helped the depression some. But that energy has to go somewhere, and soon after, she began picking at her arms in such a way that they became scarred and red all the time. No area of her body was off limits, and still to this day I see the self harm that I’m grateful isn’t worse. The most severe anxiety attacks come at home now, although they are still unpredictable. She hides them too. So much so that most who meet her would see nothing other than confidence. She is a living, breathing example that things are not always what they seem.

I don’t know if people choose not to see these ramifications of living with two rare diseases because it makes them uncomfortable, or if she is just adept at hiding it so that they don’t get to see the full extent of how hard she fights to stay above water. Maybe it’s both. I come from a family, who, while they love us a great deal, tend to believe some things should just be kept private, and handled by bottling them up. Asking for help, seeking help, and getting help that would potentially indicate to the world that you struggle can sometimes times be perceived as a weakness. The thought of a service dog for a young lady who is “doing well” through the uninformed accounts of others is appalling to many. We’ve been cautioned that she “won’t fit in.” Or that others will “judge her.” Yep. She knows all about being judged, and belittled, and maligned for being herself. She decided a long time ago she was not going to bend to the will of the world. She was going to rise above. And she did. And she does.

In fact, she soars.

Her friends list is short and neat, as any adult would tell you, it should be. Her grades are exemplary. She has chosen to spend this pandemic becoming a better version of herself. She is attending classes to be confirmed at a church where my brother-in-law is the pastor in May. She is learning and embracing a God who loves her. She has reconnected with her father in ways that are heartwarming. College choices are plentiful, and there is a bright future in her chosen field of study, Physician Assistant.

There is no harm in asking for help. There is no shame in saying, this is a lot, and I need someone to talk it through. There is nothing at all wrong with someone who needs help becoming the best version of themselves. When you desire to change the world, or simply to enjoy mundane tasks, there is actually beauty in saying “I need help.”

I see people hide from themselves and others. Then I see Meghan. She lives what we all know to be the truth, the hard truth, that the only way out is through. She is doing the difficult work so that her childhood traumas are not a weight to hold her down, but rather a valuable part of the background medical professional she will become.

Tonight we will sleep in Indianapolis. Monday Meghan will meet her partner for the next leg of her life journey. Ella will join the family as Meghan’s service dog.

And I will remind my girl again, that those who say it can’t be done, should never interrupt those that are doing it. Meghan I am so proud of who you are. Stay true to that. The rest will all work out. Sleep tonight dreaming if your new companion.

We are forever

#beatingcowdens

Ella, Meghan has been waiting for you since before you were born!

4th Grade, Zoom, and Searching for Balance

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I sat on my couch Thursday for the first time since September. It was an odd feeling to sit somewhere other that the desk chair that seems to have a permanent imprint of my bottom.

I sat down after releasing my 29 “rectangles” (read my adorable remote-only 4th grade class) from their daily Zoom meeting early so that they could play in the newly fallen snow.

It is just shy of 2 years since the fall in my classroom that changed my world on 1/8/2019. The need to teach remotely, which was generated by the suggestion of my diagnosing geneticist to minimize my exposure to Covid-19, and was sealed in securely by my foot’s stubborn inability to recover, even after a theoretically “corrective” surgery on 6/25/20, had been an experience that has absorbed almost every hour of every day since September.

After over a decade of working as a “cluster teacher,” teaching predominately a math lab, I was assigned to a fully remote 4th Grade as their real, actual full-time teacher. I was given student copies of the reading, math, science, and social studies program. Teacher’s guides were in hot demand. I was given online access where it was available. Fortunately, I was also gifted with 4th-grade colleagues who value, live, and breathe teamwork.

But, even with an amazing group of teachers to work “with” I was largely on my own. Some of the teachers were fully online like me, but most were teaching “blended” or “hybrid” programs where they were in the building with different students on different days.

Google Classroom was learned through “YouTube,” as were mostly all things Google. I figured out slides, docs, and a working knowledge of forms. I navigated TeachHub, got a recurring Zoom link set up, and vowed to give them the best I could in these crazy times. I figured out BitMoji, and tried to entertain through morning slides. I learned a curriculum I never fully taught. One day at a time.

If nothing else, I am stability for them, and they for me. The class began as 16 and has swelled to 29, but our routine is solid, and I am, for the most part, there “with” them all day. The whole thing is less than ideal, for everyone. But it is life mirroring reality at this point, and a Global Pandemic is less than ideal – for everyone.

In this capacity though, in my mind, it is all about the children, I will NEVER be able to give them a “real” 4th-grade year, but I will strive to give them order, organization, consistency and knowledge they are loved. Beyond all the adults that are out of their elements. Beyond all the political opinions. Beyond the emotionally charged debates, here on my screen daily are very real children, who are being very affected by everything we do and say. There are humans in those boxes. There are humans that are in their homes for different reasons, each with their own personality and very real story.

They are someone’s child. And as my child sits on her computer “attending” a very bizarre Senior Year, I think of the 4th grade her. And I try even harder. I think of the families that are not able to sit with their children because they are working from home, or there are grandparents watching who are not computer savvy, and I think about being raised by a hard working single mother and my ever-loving grandparents. Those children are my child. Those children are me.

I have put in more that my share of 12-15 hour days. I’m not super proud of that, as I have neglected self- care and the needs of my family. My family misses me. But, they understand. I have cried real ugly tears of exasperation and frustration at changing regulations and policies. They understand that too, and bring a hug, chocolate, flowers, or a glass of wine as needed.

I will not reach all the children. I will try, but I will not. I do not like to be anything less than successful, and that reality sometimes keeps me up at night. It would be hard to ensure 29 children in front of me mastered all their subjects. They are humans. They miss people. I get it. But, I can’t fix that either.

My girl handled the college application process almost unassisted. She worked through her essay, vetted her schools, created online interviews, and “meetups.” She is applying for scholarships and has a few promising offers for Physician Assistant programs, a career goal that seems perfect for her. Thank God she is who she is. I paused only to do FAFSA and proofread a few things and the acceptances began to roll in.

While life continues around me I plod on. I arrange science experiments at my desk and I live to provide supplemental digital resources from “Teachers Pay Teachers.” I do, as I have always been taught, “the best I can with what I have right now.”

And this week, when I got to pause I had a hard reality check. I am behind on almost every maintenance appointment. Cowden’s Syndrome, as I have been told since my diagnosis, carries with it cancer risks that peak at 50. Despite my mastectomy and hysterectomy, I remain at great risk for renal cell carcinoma, colon cancer, and melanoma among others. My care team has dissolved. The hospital I once centered out care out of has lost one doctor after another. No one has agreed to take the reigns of a less than basic life. And in this time of Covid-19, it is even harder to establish new care.

Losing track of my own health for a period of time, to benefit the mental and academic health of the children I have come to care greatly for was a necessary distraction. Now as we face the holiday season and the start of a new year, it is time to strengthen my resolve and figure out a way to strike a balance.

I need those children as much, or more, than they need me. But I need to strike that self-care balance. I need to step away from the computer, and silence the phone from time to time.

I loathe establishing care at new offices, attempting to break doctors in, when their very schedules disrupt every aspect of my life, and their care has often proven sub par.

Maybe the last few months I have been quiet because instead of #beatingcowdens, I felt a lot more like we were SURVIVING.

I have a feeling we are not alone. I wouldn’t know for sure because I’ve lost touch with almost everyone. These are crazy times. Take good care of the little people in your life. Know that however you feel about what is going on in the world they hear it and feel it.

I continuously remind myself to “be kind always.” Now more than every, everyone you meet is fighting a battle you know nothing about.”

We remain forever sometimes barely surviving, but ultimately

#beatingcowdens.