Category: life

Patient Blaming

Published on by beatingcowdens12 Comments

May of us cringe when we hear “victim blaming.” It happens often to make us feel better. somehow we are able to convince ourselves that that horrid crime, often domestic violence or assault happened because of what the victim was doing. Somehow this can make people feel safer, like it can’t happen to them. I never quite understood.

This week I have been thinking that “patient blaming” is just as real. It can come from a doctor, a family member, an acquaintance or even a friend. In my estimation “patient blaming” has decimated my spirit more times than I can count.

We saw a doctor on July 1 for the AVM in Meghan’s thigh. She was supposed to be “the best,” a term I know is used too loosely. She is a hematologist who many years ago prescribed an off label drug that quieted the AVM in Meghan’s knee for a good stretch of time. There was a GI bleed that hospitalized her about 8 months after. Maybe it was the drug. Maybe it wasn’t. We can’t seem to keep a doctor on the team long enough to have a long term understanding. However, it definitely worked to quiet the AVM because almost 6 months to the calendar after the medication was stopped, the AVM had a bleed of it’s own and left us with Thanksgiving week surgery.

This doctor knew we were coming to seek another drug being used off label for AVMs in our population. She took basic information via MyChart and seemed eager to help. We got the scan. We saw her. She spent a good hunk of time analyzing and criticizing Meghan’s regimen of prescriptions and vitamins. I asked her which ones she would cut. She had no answer, but used that medication list to tell us that there was no way Meghan could take the drug we sought.

I told her that in the absence of a solid multidisciplinary team I took us through every highway and backstreet alley in this city to get my kid functional. I worked with many doctors and put together a combination of prescriptions and vitamins that had allowed my kid to complete school with a full college scholarship, and be an athlete and community leader. She was unaffected. And, she told us that Meghan would not be a drug candidate prior to reviewing the MRI/MRA as she “does not read scans” and the report from our AM visit was not up that PM. She also made sure to tell us rare disease patients are “a lot of work.”

That evening she sent a message with articles cited for PTEN screening. NOTHING more.

But the report came up on 7/2, and I viewed it alongside the images. And I still want to talk to someone about the drug. I sent her a message on 7/3- no reply. NOTHING.

Ten days passed and I did this…

This morning we had this exchange…

Now, I had to maintain my manners, but I just about lost it. “I just sent generic guidelines???”

And WHAT exactly would you suggest we do next? How are you feeling about the report. What does it say to you?

I waited weeks for that appointment. I timed it right after school ended for the year. And again, a waste of time.

Time after time this scenario plays out.

I have lost count of the number of doctors we have seen that have come with promises of being “the best.” I have scheduled, and rescheduled. I have driven hours. I have spent ridiculous sums of money on tolls and parking. I would do it all a million times, but sometimes the feeling you are in the hamster wheel is all you have.

There is no one who knows me who would consciously say I have been anything less than a mouthy and stellar advocate for my girl.

Yet, inevitably this is where the “patient blaming” finds it’s way across the lips, of the doctors who can’t help, of those I love, and those I just tolerate.

“Why are you on all those medications?”

“Does it really hurt ALL the time?”

“Well, did you try doctor ____ in _____? They are THE BEST.”

“I took my child to _____ and that is the only person I would ever trust.”

“Everyone has pain.”

“You asked THEM? WHY?”

“What did you do differently today?”

Sometimes it is subtle. Sometimes people don’t even realize it. Other times, I’m not as sure.

Do people realize we are all doing the best we can?

Do they realize we have jobs? And insurance restrictions? And children who NEED for their mental health to have LIVES that do not FULLY revolve around waiting for doctors who MAY care enough…??

Do they realize even when we call, after HOURS on the phone, sorting out all of the above, that it may be MONTHS before our jobs, which allow for the insurance to pay for these exams can free us? Because there is NEVER EVER one issue at a time.

We are all juggling spears. All the time. There is no rest.

We are 11 appointments in over the last 2 weeks. We are far from through with the summer cram.

There is no place in my world for patient blaming. There is no place for parent/ caretaker blaming.

We in the Rare Disease Community must build each other up. And know when to speak.

  • Is it true?
  • Is it necessary or helpful?
  • Is it kind?

And as Grandma used to say, maybe if it isn’t we should just keep still.

My whole heart and soul is with a Cowden’s sister across the globe. The desire to wrap my arms around her in a giant hug is so strong. She has done all she could for her daughter. And despite all that, it may just not be enough.

Sometimes there is no one to blame. Sometimes it is scary. Sometimes it is close to your heart.

Lead with love.

If we don’t help each other – no one will.

So, we pray. We research. We learn. We rest. We pray. We seek balance.

We remain #beatingcowdens

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…

Published on by beatingcowdens2 Comments

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

Exhale…

Published on by beatingcowdens4 Comments

Meghan and Ella have been settling in so well together.  Jax and Ella are fast friends.  April and Ella will be polite acquaintances.  Ella is playing, running, eating, and sleeping.  She is adjusting to life in our home and seems to be enjoying it.

The most prominent lingering fear surrounded the lump on her side.

We gathered the notes from the vet in Indiana.  We put all her paperwork together.  The entire Ortega kennel had vet appointments today.  So, we headed out for the first time as a party of 6- 18 legs, and 3 tails.

Our veterinarian is thorough.  He has treated our dogs well.  April needed some lab work for a persistent problem we’re working on.  Jax needed to be caught up with some shots.  And, Ella, well, that pretty girl needed to get started in her next phase of life.

The vet took her in and did a complete exam.  He read the sparse notes we carried with us from Indiana.  He looked at the photos of the lump on her side.

He called to tell us that we should start her vaccinations, as he could only verify rabies.  He told us he did a heartworm test that was negative for heartworms.  He drew blood.  That “should be nothing” later this week.

And, since in these Covid times, all news comes via phone from outside the vet’s office, the three of us sat quietly while we waited.

“And the lump?”

“It’s her rib.”

Collective exhaling throughout the car…

“Her RIB?”

“Yes, if you trace along the bone it’ll take you to her spine.  Most people never feel it.  Ella is very lean.”

Fist pumping and smiling took place for a few minutes.

We live in a worst-case scenario existence.  It is so rare that it goes well.  And, yet, today, was a win.

Nerves shot for no reason. I have no idea what happened in that office, or why the vet said hernia 750 miles ago.  But this is a win.  I’ll take it all day every day.

It looks like the rest of life really does start now.

Meghan and Ella… onward.

#beatingcowdens

Puppy Steps

Published on by beatingcowdens2 Comments

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

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!

Seventeen- The Days Are Long But The Years Are Short

Published on by beatingcowdens1 Comment

August 9, 2020

Dear Meghan,

HAPPY 17th BIRTHDAY my girl!

This is not the birthday we planned, but it will be amazing in its own way.

These last few months have been a lesson for the world, that plans are sometimes abruptly interrupted and that life is often unfair.  This is not news to us.  We’ve been replaying that lesson together for many years; cheering each other on, and holding each other up through surgeries, recoveries, setbacks and all the things that come with our diagnoses.

The difference this year was that everyone else was at it alongside us.

I know you well Meg, but I have learned even more about you these last few months and I could not be prouder of you.

You tend to see the parts where you struggle.  Sometimes it weighs you down.  I see the parts where you succeed.  I see the parts where the struggle is productive and you grow.  That’s why we’ll always be good together.

There is no denying that there were times this year where frustration, sadness, isolation and loneliness tried to win.  But, as I’ve said to you so many times before, you have a 100% success rate when it comes to overcoming obstacles, and this year proved no different.

You took the “remote learning” for what it had to offer.  You missed the classes that had been engaging you and challenging your brain, but you never gave up.  You spent the end of your Junior year as you did the beginning, finishing with the same perfect report card while doing a whole lot of “self-teaching.”

Swimming was wiped out in March just days before a meet that was to be your comeback.  You were trained.  You were ready.  It was cancelled.

You mourned a few days.  You worried about how to keep in shape.  Your body had never allowed you to do much land training.  You tried video after video.  You addressed your own frustrations.  You found a way.  Now, when I see you hitting a heavy bag probably in the best overall strength of your life, I can’t help but smile.  When I see photos of an 8 mile hike, when a year ago walking .5 was too much, my heart sings.  You push your body to always be better.  You don’t give up.  You inspire me.

You had gotten us to agree to that tattoo months earlier – but you couldn’t be out of the water the required time after it was done.  Then suddenly swim practice was no longer.  So, you did it.  With our blessing you took back a little of your body that day.  You took back some control.  You started to heal your soul a little more from so much trauma.

Without access to standardized exams, without the ability to tour campuses, without your college office, you knew you had to take matters into your own hands.  Focused on your desire to be a Physician’s Assistant you carefully researched Universities.  You created a list.  You reached out to swim coaches.  You set up your own calls.  You narrowed things down.  You called again.  You got connected to admissions offices.  You are well on your way to completing applications.  You could have sat back and whined.  You could have waited.  You refuse to let anything stand in the way of your goals and dreams.  When college is ready for you in the fall of 2021 you will be well-prepared.

You had a birthday vacation to Disney with your very best friend planned to the day.  You were so grateful and so excited to experience your happy place with a great deal of independence, and super fun company too.  We watched the numbers.  We stalled.  We watched some more.  Then finally I had to pull the plug.  Your birthday is one of my favorite days.  It was hard to hand you disappointment like that.  You took your time to process and picked your head up again.  There will always be 2021…. The magic will still await.

Faced with the unusual situation of being local on your birthday you talked through all the feelings.  You wanted to do something to make joy out of disappointment.  You decided you were going to use your day to make others happy.  You chose Ronald McDonald House, as you remember vividly the treatment you received when we spent a night in 2014 before your thyroid surgery.  With a little help from Aunt Lisa, you were connected to the CEO of the RMDH New Hyde Park.  I listened as you spoke to him and was just full of pride at your maturity and ability to handle yourself.  By the time you finished he was as excited as you were.

You spent hours generating a digital flyer.  You texted and posted and shared.  You set up a contactless donation option for items on our front porch.  Signs were made.  People started to reach out.

When people asked what you wanted for your birthday, you sent the flyer.

That level of selflessness causes parents hearts to actually burst with pride.

There are many things this year is not.  Many things you wished it was.  You are starting your Senior Year of High School in very uncertain times.  Your resilience is amazing.

It is not all smooth.  It is not all easy.  There are COUNTLESS bumps, and pot holes and craters in the road.  “The other shoe” drops constantly.  Sometimes as a sneaker, and other times as a steel toed boot.  Regardless, you dust yourself off and press on.

“Get up.  Dress up.  Show up.  And NEVER give up,” was written for you.

I can not promise you a smooth year.  No one can.  What I can promise is that if you continue to remain driven, focused, compassionate and loyal, you will succeed in all you do.

My wish for you is that you can spend some time this year learning to love your own strengths.  I hope that you can spend less time worried about the struggle, and more appreciating the outcome.

Explore.  The world is waiting for you.  And the world will be better for it.

I love you more. Always,

Mom