How was your summer?

Published on August 28, 2022August 28, 2022 by beatingcowdensLeave a comment

It’s my least favorite question connected with back to school. It sometimes makes me feel like I failed when I have nothing dynamic to report. And if I were to reply with honest answers, I would overstay the expectation of the question asker who was undoubtedly just being very polite.

This summer was not one for the record books. It included just under 50 medical appointments for the three of us. I know this because the billing errors that will follow and take up hours in the months to come necessitate me keeping a careful record of these appointments in my calendar of choice.

The highlights included a bright green cast removal, an in-depth surgery in May, three colonoscopies and 2 endoscopies between us, and a pile of appointments for the busted nerves in this left foot of mine. All the necessary maintenance on the home, with two separate AC repairs, 3 car inspections, a windshield repair, and a new navigation system helped handle any free time that might have popped up. Rare disease x2 meets real life.

Meghan managed to begin the Patient Care Hours that she will need in order to apply to school for Physician Assistant studies in a few years. She also took a 7-week “Professional Development” course, voluntarily and on her own dime where she and Ella continued to enhance their team.

My girl was able to wean off one medicine, switch another to “as needed,” and change a third to one that better suits her, all time-consuming accomplishments as well. And while she is not running yet, she is comfortably walking a fast-paced 5k with ease on the regular.

And while we never got “away” this summer, we got to Broadway, and made a trip to her favorite NYC Bakery.

How was your summer?

I guess that like so much else depends on how I choose to look at it.

Rereading my own writing above, I guess I could say “accomplished.” At least I know why I am tired.

Our disease is forever. Sometimes there are extra days to fit in things that are not related to it. Sometimes there are days to fly free, to shut off the phone and shut out the doctors. This year, not so much.

But amazing things happen inside my little house. When this house is busting at the seams with 3 humans and 3 medium-sized dogs, it is exploding with love. I did not clean a single window, closet or curtain this summer. My house, like me, survived. But somehow its foundation keeps getting stronger. We raised a human who loves us enough to know she can escape to our “bubble” and rest her wings before flying again. The gratitude for that alone, that she CAN fly, that she DOES fly, and that she knows she can come back here to rest SAFELY before she SOARS again; that gratitude carries me through the most exhausting times.

This summer was a battle for so many I know. And it continues to be a battle for so many for physical, mental, spiritual, financial, and emotional health, this year it seems more than in my recent memory. The prayer list gets longer and longer. And sometimes I wonder why. Other times I am sure my head will explode if I try to overthink it. I think the struggles of all, especially the medical struggles, permeate your soul when you live with a rare disease and spend the core of your life weaving in and out of medical obstacle courses. That one is hard to explain, except if you know, you know.

We moved Meghan back in yesterday. Second year of college and time keeps marching on. This world is such a crazy place. Life is just utterly unpredictable.

How was your summer?

Maybe I will just flash a few photos and smile. No matter how exhausting and lonely this journey is, I somehow think we end up ahead. We three have a connection beyond words.

Hug your people. Be mindful of what you say. Laugh often. Love much. And then, laugh again.

#beatingcowdens

What if it all works out?

Published on July 10, 2022July 11, 2022 by beatingcowdens2 Comments

What if?

That is hands down my least favorite question. It is one that puts my head in places I’d rather it not go. I believe very much that a positive mindset can have a positive impact on your mental and physical health. Do not ever confuse that with the Toxic Positivity that I ABHOR. They are not one in the same. That being said, my trips to dark mental places typically begin with “What if…?”

So of late, I’ve presented myself with the challenge of “What if it all works out?”

When I last wrote Meghan was in the recovery phase of a layered procedure to address a precariously placed vascular malformation in her upper thigh. And, while she is not pain-free, the crippling nerve pain that had started to occupy every hour of every day has faded to black. This pain is different. And maybe for those who have not lived her life, it would be too much. But anything is better than that nerve pain. Anything. She will have an MRI/MRA to check the status of the surgical site in August.

She has been fully weaned off the Lyrica, a drug that was doing its job on the pain but doing an ugly number on her physical and mental well-being. Her thyroid meds have been raised. The muscle relaxant is much lower. And she is starting to have some mental clarity back. She has begun walking, a few miles at a time to get her physical strength back and to give some muscle back to the leg that was just too painful to do much with.

She set a goal. She wants to run a 5K. To some that may not seem like a big deal, but this girl was told at the age of 8 that she could not run. At all. She had to quit soccer. She had to drop dance. She could not join track even though she longed to run. She landed in the pool because it was all she had left. For her, it is an epic goal. This week she got the blessing of her orthopedist to go for it. Slowly. She is hoping to be ready this fall.

What if it all works out?

Don’t worry. We are not delusional. We know the long and windy road will continue before us forever. We know that we often have to pause at the rest stations along the way. We even know that sometimes we have to pause at DIFFERENT rest stations, because she is not me, and I am not her, and we each handle the struggles that come at us differently.

We have not forgotten about this, which we will carry forever.

But, what if it all works out?

I am overwhelmed by appointments on the regular. I am sometimes downright angry that so much of our life is punctuated by traffic and travel. Not to beaches or parties, but to doctors and hospitals. I am sometimes totally twisted that there seems to be no time to breathe and that “regular people” appointments, job issues, car trouble, and nonsense seem to come at us like sideways hail in a storm where the umbrella is inside out and useless. I hide from those I love, unable to repeat the same story over and over like an old and worn record.

But I listen. And I hear. I remember. I know of sick parents and terminal illnesses. I know of cancer battles, aging struggles, and injuries. I pray for families whose children are frighteningly ill. And my heart aches for friends who have buried their children.

What if it all works out?

There is a chance. There is always a chance. That we will screen and scan and bob and weave the worst of what Cowden Syndrome has to offer. My girl, despite her obstacles, has an impressive GPA, a relationship where they treat each other with incredible respect, a career path on the horizon, and life goals to make this world a better place.

What if it all works out?

This week we had appointments two days in a row. 35 miles, roughly 2-2.5 hours each way to Long Island. One was to her favorite orthopedist who never leads us wrong. He wants hand therapy for the healing fractured scaphoid (just “regular stuff” finding its way…) if we can manage it. And, he wants to see her again before school starts in August.

The next day we went to see a Pediatric Rehabilitation and Medicine doctor. We met him as part of the “new team” in December and he was brought on to address issues of pain. In December we could not change anything about the pain management as the goal had to be to survive until the procedure in May.

However, we were both intrigued enough to want to hear what he had to say when things settled a bit. Literally the only opening the entire summer was a 2:30 on 7/7. We arrived after a ridiculous drive and he did not disappoint. In this day and age, a doctor who is covered by insurance and takes an hour or more with you while LISTENING is unheard of.

More miraculous for us, is when issues of chronic pain and a generally overloaded sensory system were brought up, they were met with concrete medical validation, complete with images of the brains of patients with similar struggles. He met Meghan where she was and had a thorough discussion with her, appreciating that she had enough knowledge after a grueling year in Anatomy and Physiology to talk to her on her level.

What if it all works out?

It’s tough to be a teenager. It is exponentially tougher to be a teen whose life is filled with so much pain and medical drama. It is the worst to be a teen when you have lived through and endured more than most adults, and those same adults discount your reality, your pain, and your experiences. It is rare and refreshing when a doctor does not. Apparently, there are a few on Long Island that are worth the Belt Parkway.

He was able to validate what she knew. That she can FEEL everything in her body with abnormal acuity. But he didn’t throw a drug at her, he took notes and kept her talking. Then, when he had a suggestion for a medication to trade out, not add on, and potentially eliminate two and add one, he still wasn’t done. I’m not sure which one of us brought up her purple feet as she had been sitting in sandals for almost an hour on an exam table, but that sparked another conversation. I listened as he asked questions on a list I had been checking off for years. I smiled behind my mask, not because I was glad about what he was going to say, but because it made sense and he was LISTENING.

This is the same doctor who questioned her diagnosis of Hypermobile Ehlers Danlos because it did not feel quite right to him. After a lengthy conversation including all the right questions, and some heart rate checks he said “POTS.”

Postural Orthostatic Tachycardia Syndrome, brought so much clarity for her. Especially in the middle of a week-long hardcore battle with her stomach.

And finally, there was potentially explained everything from her heat intolerance to the painfully twitchy foot that sometimes drives her mad, and everything in between.

What if it all works out?

Why am I not flipped out by this? Because nothing changed. All the symptoms she was having in the office on Thursday have been with her in varying degrees for her whole life. And, truth be told, many I recognized in myself. All that happens with a diagnosis, a label, if you take it for what it is, is that you are validated. Finally. And in this life, it matters. And maybe from this, and switching a few medications around and changing a few things, she will be able to go even further, and do EVEN MORE.

Doctors who work with you, teach you to maximize what your body CAN do. And since Cowden Syndrome is not a disease for the faint of heart, we need all the strength we can get to keep moving forward. Our doctors are mostly a “guide on the side.” They are there to provide scans, medication, and sometimes procedures. But, mostly they are who we need to teach us how to maximize our lives in these bodies. They are to help us never feel weak, less than, or incapable. When they do their jobs right they are to explain and empower.

Meghan has her first GI screen this week. On Tuesday there will be a colonoscopy/endoscopy baseline. It comes at a good time because that stomach has been in a FOUL mood this last week. And we are hopeful that it shows, as GiGi used to say, “A whole lot of nothing!” And then, maybe we will take a break for a week or so and put the doctors on pause.

For today, I come to you from a place of “What if it all works out?” A place of gratitude, grace, and grit.

I am a messy hair, no make-up, living on grace, making-it-up-as-I-go-along loner. I am not ignoring you. I am busy seeking joy on the Belt Parkway and the BQE, and believe me when I tell you, that is a full-time job!

#beatingcowdens

Matching shirts and car selfies. “Vacation” 2022

Gratitude, Grace, and Grit

Published on May 21, 2022May 21, 2022 by beatingcowdens3 Comments

May is PTEN Awareness Month.

Gratitude is a practice I try to engage in regularly. There is so much to be grateful for. My child is thriving despite countless challenges. I know of too many parents who can not say the same, by no fault of their own.

This May of 2022 my 18-year-old marked her 20th surgical procedure. We are acutely aware of PTEN, Cowden Syndrome, and its ramifications. Some could say our whole purpose here is PTEN Awareness.

The challenge though is to raise awareness outside of our diagnosed population and our inner circles and spread it to the medical community so testing diagnoses come earlier. The humanization of this condition is critical. The appreciation for its unique challenges is essential. This has to begin with empathy from front office staff, scheduling appointments for real people, trying to hold down real jobs or maintain real school schedules, and keep the “normal” aspects of life together while simultaneously navigating the screening and surgeries inevitably required of Cowden’s patients.

The realization that even within our “rare” diagnoses, no two patients seem to travel the same road needs to provoke the medical community to consider our individuality within the anomaly of a 1 in 200,000 disorder. We need more empathy and less sympathy. We need creative solutions to unique problems. We need people who believe us instead of “patient blaming” and shaming us for symptoms and pain that are poorly understood.

In short, #beatingcowdens involves a combination of “Gratitude, Grace, and Grit.”

I tend to wear T-Shirts with short sayings to keep me motivated through each day. I am fairly sure most people don’t see or read them, but in reality, I choose them more for me anyway.

Monday I had my “Gratitude, Grace and Grit” shirt, very purposefully selected as Meghan, Ella and I loaded ourselves into the car for a contrast MRI/MRA of the vascular tumor in her right thigh, and presurgical testing for that same tumor. A lifetime of surgery and less than stellar interactions have left their mark on my girl. IVs and blood draws hold some of the most intense trauma and there have not been enough consecutive positive experiences to make contending with them any easier.

The anticipation on the 35-mile/ way too long in traffic/ ride was palpable as always. Yet, we found things to chat about that made me simultaneously proud and sad. We always want to remove the hurt from our children. She is quite a stellar young woman, stretching her wings at college, and beginning to fly. We stopped a long time ago wondering what life would have been like without this mutation. In our hearts, we know it shaped us, separately and together.

We are unapologetically Christian. I was raised in the Lutheran Church, an ELCA congregation where I was baptized, confirmed, married, and had Meghan baptized. My beliefs are firmly rooted among other things, in this verse from Ephesians 2, verse 8: “For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God…” Her faith journey had more twists and turns than mine, as changes at critical points in her childhood left her often in a faith freefall. But, my brother-in-law an ELCA minister kept the door open for her always, and before she left for college she was confirmed in the faith of her baptism, one she had struggled to find her path to, but now embraces.

We blasted “Spotify” at times on the drive, and multiple times found our way back to this song, https://www.youtube.com/watch?v=q8anLMKB9N8 “See Me Through It” by Brandon Heath. Chuckling as we repeated the line “When the sky falls, who am I gonna call, the one who put it up there in the first place!”

We have learned to make our own fun, and to make our memories valuable. We’ve learned to use the time we have together and appreciate each other where we are and with all we have. It’s been the most important lesson and has allowed our relationship to develop as ironclad.

The MRI was long. The IV was painful. The pre-surgical testing was annoying. The blood draw was difficult. Those are the uncomfortable sentences people don’t want to hear. We left the hospital in exactly enough time to smack into the start of rush hour.

However, the overall story here, this time, is one of extreme gratitude. The MRI was scheduled at the exact time we needed it, organized by the incredible Interventional Radiologist who is new to us, but seasoned and skilled. It leaned right into the pre-surgical appointment and I was utterly grateful for the man who promised to get it all done in one day, and then personally followed through.

That Doctor. The journey to him was one where all the stars aligned. The orthopedist who is utterly well-respected by both of us and has been a regular in our rotation for a decade knew we needed a new team for this. That orthopedist, trusted by both of us, sent us to a hematologist who has an interest in vascular malformations.

That hematologist had us at hello. Literally. It was days before Meghan was to leave for her freshman year at college. The pain was worsening. There was no time to get to see her in person. So she consulted. Via telehealth. For over 90 minutes. And she prescribed medicine that took the edge off. And she stayed in touch. And titrated doses. And called me back. And emailed. And cared.

She gave us a list of doctors to see and suggested the Interventional Radiologist. And more magical than that, she made sure that we got to see 5 doctors in 2 days during the VERY short window Meghan was home for Christmas. All of them were worth it. One of them was the Interventional Radiologist who we desperately needed.

Meghan’s options were not encouraging. The direct stick embolization in 2019 was nothing short of a disaster. This tumor was deep. Excising it was advised against by the orthopedist as he could offer no promises after cutting through that much muscle that the leg would ever be the same. But, instead of pushing Meghan into a box, this doctor listened, and he thought. And he treated her like a human. When we went into his office, her images were already up, on a huge screen. He looked at me and told me that Meghan’s tumor must hurt. And while I understood on whatever level a bystander could, the extreme pain she was in, I so desperately appreciated the doctor who was advocating for my girl. SHE must have felt a relief even I could not fully understand.

Here in front of her was a real doctor, expressing how oddly placed her tumor was. Explaining how and why the pain was often just unreal. And, offering to try something new. Something outside the box. Because he wanted to help. He connected already with the orthopedist we love. He mentioned consulting with other hospitals and was willing to talk to anyone, to literally move mountains to try to help. He suggested cryoablation-freezing the tumor out. And we were intrigued because it made sense. And, it just might work.

We talked about the week of May 16th as a target date. It was the week after final exams and made the most sense. They made it happen. This doctor consulted, studied, game planned, changed plans, kept Meghan and I informed, and answered any question she had, and then some. Gave her his email. Called her at college. He treated her like a real, actual important human being. A whole person.

And so Wednesday morning, May 18th, we walked into the hospital at 6:45 AM. By 8:45 she went one way and Ella and I another. The doctor called me mid-morning to update me on the transition. He knew I’d be worried. Then, almost 4 hours later Ella and I met him in the hallway as he showed me pictures of the tumor, then the area where the tumor had been prominent. Then the site before and after the cryoablation. He said from his seat it went as close to plan as it could have.

I wanted to hug him. I doubt he had any idea how much his efforts mean. I doubt he truly knows that being treated like a human was so strange, and so utterly amazing.

Maybe this PTEN awareness month we will reach another doctor who wants to learn. Maybe we will reach a doctor who wants to think outside the box, and will understand that it is sometimes critical that they do so. Maybe we will reach a person who schedules appointments who will understand the desperation in our voices when we need to schedule that next one after work. Maybe we will reach someone who needs to hear this message and will use the knowledge to impact a patient in a great or small way. Maybe they will leave us a message here and let us know.

Or maybe the very special Interventional Radiologist, and the hematologist who took the time and the risk without a face-to-face, and the orthopedist who never ever gives up will see this and know they have made an epic difference. Maybe that is enough. Because we will never be able to repay them, and no kind word is ever wasted.

We are still in the early stages of recovery. We have no idea what the long-term response will be. But, we have opened a tiny window and allowed HOPE to creep back into our worlds, and that, well, that is everything.

Gratitude, Grace, and Grit. #beatingcowdens takes all three and then some.

To be continued…

#beatingcowdens

4th Grade, Zoom, and Searching for Balance

Published on December 19, 2020January 16, 2021 by beatingcowdens2 Comments

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.

Rare Disease Day- Video Recap

Published on February 10, 2020February 10, 2020 by beatingcowdensLeave a comment

Rare Disease Day Video Flashbacks…

This year World Rare Disease Day is Saturday February 29, 2020.

As we prepare to do what we can to raise awareness of Rare Diseases… I’m reblogging this post with some videos Meghan created as a younger person with Cowden’s.

Keep in mind, the most recent here was 2017.

ENJOY!

beatingcowdens

World Rare Disease Day is February 28th. People all over the world will work to raise funds and awareness for over 7,000 Rare Diseases worldwide. In our house things are buzzing, as we prepare to teach the world a bit more about Cowden’s Syndrome.

There will be so much time to write. Soon. Right now we are preparing for Rare Disease Day 2017 and “Jeans for Rare Genes 3.” All the preparing brought me back to her video from last year. And then I looked at the year before, and the one before that. And I was struck by how much she has grown, not only in her technological ability, but also as an advocate, and a voice, and a human.

There will be no video this year. It was time for a change of pace. But, I thought it appropriate to post these here, now. She keeps me grounded…

View original post 15 more words

PTSD is real…

Published on October 28, 2019 by beatingcowdens4 Comments

I catch the judgments when I mention PTSD to even those closest to us.

I have the utmost respect for our military, and our servicemen and women. They are the front lines, defending us and keeping us safe. They experience horrors I could not imagine, and I am daily grateful for them. The PTSD many suffer is real and no one would ever question it.

But, just as l know that their’s is real, I am that sure it is real in my house too.

Post Traumatic Stress Disorder does not stipulate the trauma.

Some days I try to ignore it. I try to hide it. I try to work around it. I try to pretend it’s not there. I try to lean into the pressures of well-meaning friends and acquaintances alike that we should act “normal” so as not to marginalize ourselves. I hear the logical statements about fitting in. I hear them.

We talk about “everyone has something.” We are acutely aware that we are not the only ones that suffer. We are aware of our blessings. We share those blessings with others when we can. We listen compassionately. We are believers in the notion that, “If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.”

We are aware that we can be perceived as aloof, or detached, or disinterested. We are also aware that largely by circumstances and partly by our own design, we are alone. We haven’t really ever spoken to you about why… We try to listen compassionately. We try to be the people you need. We try to be lighthearted and positive when we feel like we are being crushed.

When the diagnosis of PTSD was first given to me as part of an analysis of my beautiful daughter’s response to the constant traumas that had shaped her life, I was physically ill. And then I was really sad.

And through the years I have tried to wish it away. I have tried to convince and cajole and distract. I have tried to rationalize. I have tried to blame myself. I have tried to be angry. I have tried to pray. I have tried to walk it off. I have tried to medicate it.

I have brought her to quality therapy. I have introduced medication. We have tried strategies. We have tried simple grit. We have never quit. And there is progress. But it is not easy.

I’ve been home a few weeks now with a foot that won’t heal. I am trying to put into play some things that have been on the back burner for too long. I am rediscovering my faith, and leaning back into the peace that has anchored my soul for so long. I am learning new things, like the operating system on a new computer. I am trying to find value in the waiting to heal.

I have also had some time to watch some old home videos, transferred from the portable video camera that was state of the art when our only child was born in 2003.

I look at some of those old videos and I laugh and smile. And I hear the purity and innocence of a life untouched by physical and emotional pain, and the cruelty of the loneliness that often surrounds both. And I laugh in spite of myself while the tears stream down my face.

We are strong. We are determined. We are compassionate. We are intense. We expect a lot from those around us, because we expect a lot from ourselves. We are often isolated, marginalized, and left to live on the edge of all things social.

PTSD, the elephant in every room.

You see the diagnosis of Cowden’s Syndrome was not the start of it. The first medical intervention was before the age of 6 months…

The years of hospitalizations, immune deficiency, chronic illness, food allergies, constant GI upset, speech, OT and PT services, led right into one surgery after another, with scans, doctors visits, and a few emergency room trips sprinkled in. There were arrogant doctors and medical staff, ignoring that we were literally walking through fire trying to survive. There were teams that would not communicate, and problems we had to try to solve on our own. There were well meaning people in our lives asking if she was “better” because they could handle nothing other than a positive in the midst of this crazy, wild storm we were living in.

The diagnosis at the age of eight formalized the fact that we were definitely different. It gave an answer while raising more questions and increasing the isolation, as parents scheduled play dates with children who became friends while we rode the FDR drive for hours after a day of work and school. They went to the mall, or to the movies while we headed to PT to bring that knee back from surgery 4,5,6,7,8…. It was inevitable that the divide would grow.

I told her she could do anything. And I meant it. I still mean it.

She is academically rock solid. She is an athlete. She is a good friend to those who let her be. She is thirsty for knowledge. She is insatiable in her desire to make the world better.

She’s also angry. And its hard to see it. It’s hard to feel it, and to watch it. But, it’s real. And it’s valid. As much as we were able to do for her, the basic joys of childhood were taken from her. From colic, to hospitals, to bullying so severe it almost broke her, to being just outside the edge of every circle or group… A week in Disney every year helps, but even the Mouse doesn’t have a bandaid big enough.

We stay busy. It is the best way. But sometimes it breaks down. This has been an extra tough week. There isn’t one reason why. It just is sometimes.

As I sat with her the other night and the memories of the most traumatic surgery turned my strong young lady back into a terrified 10 year old, I was reminded. PTSD is very real.

It is real when the medical world is overwhelming you.

It is real when the pain is chronic.

It is real when the thought of getting out of bed is just too much.

It is real when you need the dog close by to even close your eyes.

It is real.

It is also real when you’re the youngest NYS Woman of Achievement in 2016 at the age of 12, or being honored with a Humanitarian Award at 15.

It is real when you’re holding a 3.9 GPA.

It’s real when you are achieving best times at Junior Olympics.

It’s real when you’re laughing with your high school swim team.

It is real when you’re in costume on the stage.

It’s just flat out real. And most of the time you have no idea what it looks like. The costume is better than Broadway. The mask is strong, crafted through years of survival instinct.

It never goes away, and yet it takes over without notice at the most inconvenient times.

PTSD is not an indicator of weakness, but rather of strength. For living with it means you could have given up, but you are pressing on instead.

I’ve passed this advice to parents through the years who are new to our diagnosis.

“It is a lot to handle.”

Don’t underestimate.

It is hard to be kind to those who are different. It is hard to be with people who are sometimes just “a lot.” It is hard to care.

But the reality really is you just don’t know. You don’t know the struggles facing anyone you pass by on the street. You have no idea.

It’s neither a contest, nor a competition.

We are not perfect. It is harder when the hurt is in its most raw periods.

But, we have goals. And perhaps they go back to the “Golden Rule” of my youth. “Do unto others as you’d have them do unto you.”

That means you keep paying it forward, without expecting it to be repaid to you.

If we all, ourselves included, can remember that everyone has real struggles, and we can all focus on kindness, I’m pretty sure we can start real change.

One smile, one inclusive invitation, one held door, one kind gesture at a time.

“Be kind always, because everyone you meet is fighting a battle you know nothing about.”

#beatingcowdens

Desperate times…

Published on October 10, 2019 by beatingcowdens4 Comments

I took the knee scooter to the mall.

I brought my husband. Well, technically he brought me. And he lugged the giant contraption down the stairs and into the back seat of our “big enough for most things, but not this thing” Sonata.

The screen on his iPhone had cracked and he needed to go to Apple. I needed an outing worse than a puppy who has been crated too long.

He dropped me off at the door. He rode the scooter through the parking lot to meet me. Apparently, like so many other things, its a LOT more fun when you don’t need it.

I laughed in spite of myself at the sight of it. I was also glad our teenager had decided to stay home. The sight of it all would have likely been just too much.

People stare right at you, while simultaneously judging you as you drive this thing. The local mall lacks the tolerance of Disney World. In fairness, from face on, it looks like you’re using wheels for fun. It’s not until I have passed, if they bother to look, that they would see the giant walking boot resting on the knee pad.

Today is 8 weeks and 1 day since I’ve been “booted” again. 57 days.

I have had more surgeries in my life than I can count. Not a single one of them kept me down for 8 weeks. This foot has been messing with my life for over 8 months.

Double Mastectomy – back at work in 5 weeks.

Hysterectomy – back in 2 weeks.

I once had arthroscopic knee surgery over a long weekend, and was back on the 4th floor in my classroom the following Monday.

Vascular, over the February break…

Biopsies, a day tops…

We always say recovery pain is the best kind, because you know it’s going away.

And yet the answer to “Does your foot feel better?” still remains “Not really.”

My kind and compassionate local podiatrist, in a combination of frustration at the injury that won’t heal and my insurance company making it harder for him to treat me, has advised a visit to Hospital for Special Surgery. I’m sitting. Foot up, phone in hand, waiting to try to schedule.

I rode that knee scooter all over the mall. I rode it into the grocery store too. Quite simply, I’m tired of being locked in my house. It is truly a ridiculous and ingenious contraption.

If you asked me 2 years ago if I would ever… the answer would have been “NO WAY!”

Except if I keep learning anything through these years of life with a rare disease, and also just life, it seems to be” never say never…”

I had a boatload of things I wasn’t going to do as a parent. I’m pretty sure the first one was undone about three hours in… right after the anesthesia from that c section wore off…

Wasn’t going to… feed certain things, watch certain things, give certain things, etc. etc. And then you find yourself learning that all the plans in the world are suddenly invalid as you just try not to damage the tiny human.

A great deal of my pride was left behind in the OR where she was delivered.

I lost a bunch more of it through a slew of breast biopsies prior to the double mastectomy in 2012.

The uterine biopsies, the hysterectomy, the “cancer screening” human exams took a bunch more.

And there are few things quite as humbling as a breast MRI of your silicone implants.

I was never “in fashion” but I used to take great care in what I wore. Things were dry cleaned. Stockings and heels were worn daily.

Then there was back pain that seemed only better in sneakers. Coupled with a significant weight loss my wardrobe evolved into jeans, t shirts and sneakers. May be a dig at my early judgment of “too casual” teachers…

Life, at it again…

If we are open, and able to be introspective, we are changing and growing all the time.

I am in a painstakingly slow process of relinquishing control.

Control is really largely an illusion anyway.

Faith, trust, hope, and the ability to embrace what the future has in store, these are my current goals.

I’m a work in progress.

So if you see me and my knee scooter, be kind. You may even see me up and down the block. These are, after all, desperate times…

We’re done being caged up. I need some fall air. I am ready to get well. Since my foot isn’t cooperating, I’ll start with my mind.

#beatingcowdens

Check in…

Published on October 2, 2019 by beatingcowdens2 Comments

grass is greener “The grass is always greener…” Blah, blah, blah.

One of those phrases hard to hear, yet typically true.

I woke for work so many days wanting an extra day off, to do nothing. A break from it all. A weekend escape. Me time. On my terms.

And here I am. Not on my terms at all. Finishing my seventh week in the “boot” with no end in sight, and daily trying to be diligent about restricting my movement. All in the hopes the foot will finally heal enough for rehabilitation, and a return to the daily grind. Isn’t it ironic?

ironic

Seems to be how life goes a whole lot. A dear friend once told me, “You can have it all, just not all at the same time.” Sage advice that I have frequently pondered through the years, but especially these last few weeks. She stopped by and spent an amazing few hours helping to make some of the time melt away.

Someone sent beautiful flowers to my house last week. They sat on my table and every time I rolled past them on my scooter I smiled. Unexpected random act of kindness that lifted my heart.

E89E6AD3-E8C2-4A71-AE76-6B43B6EAA43A

Someone sent me a text out of nowhere, just checking in. The smile it gave me lasted for hours.

There is one who checks in to keep me involved in the day to day outside of what is currently a very small world.

Another sends me Instagram messages. Simple Smiles.

check in

A dear friend stopped by with a bottle of Coke and left it in a bright pink bag on my porch. She had taken the time to pick one up with my last name on it. I try to generally be healthy, but a sugary real coke is often a weak spot. She knows. I will save it for a time when I’m really starving for company. Maybe tomorrow?

I’ve been focusing as a chronically ill person would, checking boxes, and completing a variety of appointments that are necessary for the management of Cowden’s, yet sometimes interfere with my work day.

I’ve cleared a cardiology intake, and can now hope I need nothing more than an annual drive by. I have “stacked” several appointments for Meghan on a Monday in January. It will cost me the day (in my optimism that I’ll be there…) but it will save us a world of trouble going in once instead of three times. I have filed claims, copied, faxed, sorted….

Meghan got 2 wisdom teeth pulled Friday, right in front of a 4 day weekend from school. I’ve set her up with a new eye doctor for her annual screen on Election Day. The eyeglass forms from the Union are on my table. Felix and I need exams as well. I’ve spoken to pharmacies, stayed on top of prescriptions and supplements.

6 month dermatology screen for both of us next Wednesday.

I have a few projects, a few things I hope to get focused on. But, I am easily distracted. And I am focused on my apple watch, and my step count, which I have been instructed to keep painfully low.

There are some nights, after using up my steps at any of the above appointments, that I’m stuck in my bed pretty early.

I have an app on my phone that has me reading the Bible more than I have done in far too long. I love the way the books are illustrated in drawings first.

I also have an app that I can waste hours on bouncing bubbles.

I’m up to date on the DVR. I watched “Diagnosis” on Netflix.

I’ve been researching some alternative pain management.

There is always a way to stay busy. There is always something to research, to sort, to shred. There is ALWAYS a way to better yourself, regardless of the restrictions.

What I don’t do is pick up the phone. I don’t really reach out. I’ve been battling for quite some time, and I work hard staying afloat. I get the job done, and I always will. Failure is not an option. Becoming a completely isolated introvert however, is.

It’s hard to reach out when you’re struggling. I do my very best to broaden my senses and put small gestures in the direction of those I know might be having a hard time. Just because you haven’t heard from them, doesn’t mean they wouldn’t love a check in. In this technology world where its so easy to say “I’m thinking of you…” We should all try it more.

It’s not about grand gestures. It’s about knowing you’re missed. I’m not always as good about it as I could be for others. But, I’m working on it.

Check-on-your-friends

That starts now. Because if I feel this way, other people do too. And if we can all check in and share a smile in whatever way we know how, it will make a difference.

And right now, I’ve got plenty of time, anxiously trying to heal this foot while…

#beatingcowdens

Forced Pause…

Published on September 16, 2019 by beatingcowdens1 Comment

My sister had a series of hamsters when we grew up. I don’t remember how many. I actually don’t remember much besides the smell of the cage, and the wheel they used to run in. They never seemed to tire of it, and each spent long periods of their day there. Maybe it’s because they were caged with few other options. Maybe they didn’t know any better.

Regardless, I’ve thought about those hamsters a lot lately.

I feel very much like we live on the wheel. Every day is centered around executing a well-oiled machine where an insane amount of activities, assignments, and appointments fit into a tiny window. So at an early hour we hop into the wheel in a sense, and we run all day.

When you’re in the wheel you may think about nothing except for the next task. Or you may wonder if there is a better way to get through the day. You may long for a break from the routine and the schedule. You may wonder what you’d do if…

We are chronically busy. Sometimes out of necessity and sometimes by design. Sometimes, in the case of those of us with chronic illness it is a little of both.

In my house we are busily maintaining health, through frequent appointments and therapies. We are also busy trying to fit a regular life around it. There is constant motion.

Until there isn’t.

I spent so many moments wishing I could take things a little slower. I wished I could have some time, for a full nights sleep, to clean my house the way I want it, to visit with friends, to take long walks, and…

And now I’m here.

A January foot injury at work has morphed into a monster that refuses to heal. Stress and strain and alternate gait patterns protecting the original injury continue to set the healing process in the wrong direction. A stress fracture of the cuboid bone continued to worsen. It’s now my first official “fracture.”

It is time for me to pause.

This time there is no rushing out of the boot. There is no making believe its all ok. There is waiting. Resting. Minimal weight bearing. There will be additional imaging to clear the healing before I head to physical therapy. There are only very short car trips to doctor’s appointments and to transport my girl.

I am here. In my house. Alone.

And it sounded to heavenly when I was dreaming about it in the middle of the chaos of the day to day.

Now it sounds a lot like the tick-tock of the clock hanging over my head.

It feels a lot different when I have to let someone else teach my students.

It is not as productive as I’d hoped, since all the cleaning and sorting and organizing I promised myself if I ever had time is currently off limits with the whole restricted movement thing.

It is a battle not to let my head overthrow me with its worry about “real” Cowden’s issues that may at any point smack us in the face. It is tough not to think about the backlog of surgeries that will come, but have now been placed in triage.

And yet I have to make a choice.

There was a very inspirational GoalCast in my Facebook feed this morning.

Claire Wineland Dies at 21 and Leaves Beautiful Message

And I’d encourage you to watch it if you have a moment.

Her life was way more challenging than mine. Yet she made a choice that I still struggle with sometimes.

These last few months without the proper use of my feet have often left me battling depression. I do not have it all together, or have an inspirational message as this young woman left behind in her short time on earth.

What I do know is if I choose to wallow in this I will miss the “pause” that has been placed in front of me.

Instead I will make the conscious choice to make what I can do, more fulfilling.

I am going to try to write a lot more. I am going to have some people visit. I am going to handle a few “sitting down projects” that are in my path. I am going to open the windows and appreciate the fall weather even if I can’t walk in it this year.

I’m going to look at my orchids, and their beauty and crazy, stubborn irregularities that make them magical for me.

I am giving small pieces of my life back to reflectiveness and prayer and simple mindfulness.

Someone took the wheel out of my cage.

For however long it’s gone, it’s on me to decide how to view it.

If you take the time to watch the link above you’ll understand when I say today I am looking to add some lights and a few throw pillows.

This is not easy. If you’re reading this you likely go through hard things too.

I am a work in progress. Thankfully God’s not finished with me yet.

I’ll be here with my feet up.

This too will pass eventually.

#beatingcowdens

Rare Lives, Rare Disease Day, and So Much More to Come

Published on February 27, 2019February 27, 2019 by beatingcowdensLeave a comment

Thursday, February 28th, 2019 is World Rare Disease Day.

There was a point close to forever ago when that meant nothing to me. I had never even heard of it.

Our initial Cowden’s Syndrome diagnoses came in the fall of 2011. Meghan got her’s first, and mine followed soon after. 2012 held the most insane whirlwind of medical and surgical experiences we have ever known.

By the time Rare Disease Day came around in 2013, we had begun to feel the need to raise awareness of our PTEN Mutation causing Cowden’s Syndrome. Even though we were grateful to have each other, to be 1 in 200,000 can be isolating.

At the time my girl took to the Global Genes Project and learned all she could about rare diseases. She was most struck by the reality that many children diagnosed with rare diseases don’t live to see their 5th birthday. She promised she would always try to speak, not only for herself, but also for the “littles” who couldn’t tell their story.

Meghan’s Speech in 4th Grade…

The text of her speech – Meghan Speaks Out!

In 2013 she spoke at her school and at mine. We handed out denim ribbons, and started opening eyes.

In 2014 we stood together, as she was a student at my elementary school. She created a video, we did a fundraiser. There was something empowering about sharing knowledge.

February 2013 Article

In 2014 she met Borough President Oddo and they are still in contact. He has been a mentor for her through the years.

RDD Blog Through Meghan’s Eyes 2014

Rare Diseases as a whole are common. One in ten people suffers with a rare disease. Yet, there are over 7,000 rare diseases and each carries with it it’s own specific challenges. More than 350 MILLION people suffer from a rare disease, yet it takes 8 years on average for a diagnosis. https://globalgenes.org/rare-facts/ In the interim, so many people trudge through the day to day challenges alone. Typically there is no one to relate to their experiences, and even the best intended friends and relatives often tire of the chronic nature of a disease that won’t ever leave.

Raising awareness became a mission of Meghan’s to help people become more compassionate and kinder towards each other. We have always worked with the understanding that “everyone has something,” and the more we learn empathy and compassion, the further we will get.

Meghan’s early days of speaking in schools, and creating awareness videos evolved into “Jeans for Rare Genes” a fundraiser involving friends, family, and the community. There have been 4 so far, each one different than the ones before, but all helping to raise funds and awareness for rare diseases.

In December 2013 the PTEN Hamartoma Tumor Syndrome Foundation was born, through the blood, sweat and tears of Kristin Anthony, and with a village, it is growing into a helpful, guiding light in our community. And, finally Meghan has found the focal point for the fundraising!

(check out some of the links below for some of our journeys)

RDD Meghan’s Video 2015

Twelve Surgeries in Eleven Years Article 2015

RDD Meghan’s Speech and Video 2016

Understanding Cowden’s Syndrome Article

Through the years my girl has been honored as a New York State Woman of Distinction, the youngest ever, in 2016.

She was awarded the “Humanitarian Award” at the Teddy Atlas Dinner in November of 2018. She has racked up close to 20 surgeries in her young life, and yet she has managed to remain a scholar and an athlete.

Lives now forever intertwined. Kristin Anthony celebrates Meghan’s honor with us.

Celebrating Rare Disease Day is sometimes like going to the worst party ever. Or, maybe it’s the best. I guess it depends on how you look at it. We’re here… stronger. The community is growing. Support exists. Hope exists.

Last summer we were contacted by Aldo Soligno on behalf of the “Rare Lives Project.” He had worked on this project in Europe and had had much success raising awareness to the government about the lives of people with rare diseases. We were touched to be asked to be part of his American pilot of this project. And, while it has not received the funding he had hoped, the release of this summer’s photos on social media has been therapeutic for both of us.

Here are some of the picture released to date. Photo credit Aldo Soligno.

Please follow “Rare Lives” on Facebook, Instagram, and Twitter to help them raise awareness of all rare diseases.

Please follow the PTEN Foundation

on Facebook, Instagram and Twitter. Follow their community work, their fundraising, and their efforts to unify with PATIENT FIRST.

This neat initiative is taking place right now, among others!

https://www.facebook.com/ptenrocks/?sfnsw=cl

We are perched in exciting times. It is a time to reflect, to gather strength and resolve and press forward.

This year I know more people with Cowden’s Syndrome, and more people with other rare diseases. We are allies and advocates. We are parents, sisters, brothers and friends.

This year I hold close in my heart a friend’s little one, waiting on her diagnosis. My heart feels their anguish. My faith tells me their help will come.

There are still struggles. Plenty. But, before telling those stories it was time to remember from where we came.

One thing will not, and has not changed. We remain forever