The Rain…

Published on April 23, 2022April 23, 2022 by beatingcowdens1 Comment

I walk past a sign in my hallway regularly. It has the familiar phrase, “Life is not about waiting for the storm to pass, it’s about learning to dance in the rain.”

I think about other cliche phrases like, “Into every life, some rain must fall,” or, “You can’t have a rainbow without a little rain.”

And I picture a mom and a daughter in their rain boots, splashing and laughing with a rainbow peeking through the clouds.

Then I retreat further into my corner, chastising myself for even being a failure at that.

I am a rational person. I am numbers, data, and spreadsheets all day. I understand the gravity of world events. I comprehend and ache for epic loss, severe illness, and struggles right around the block. I have gratitude for abundant blessings. I adore my husband. I am watching my daughter flourish on her own at college. I believe in God, and have faith that we are in a resting place on the journey to eternal life.

Yet, I struggle.

And as I have mentioned so many times before, the reality of “parallel truths” sometimes aches in the depths of my soul.

The rain, right now, feels more like a neverending storm cloud. Some days I do not see the sun at all, even when I know it is shining brightly. And I mean that literally and metaphorically.

I have always been one to keep it real. Especially here. I want a mom who finds this page for the first time, soon after a diagnosis like ours to feel there is hope. There are kindred spirits along the road they are about to get on. Yet, I will not ever lie to them. They already know the truth in their hearts. This is not an easy journey.

It took a long while to rid my daily encounters of those who are prone to “toxic positivity.” As I said before, I am acutely aware the blessings of this disease come from the “warning flares” we get along the way. And as I watch others suffer from cancers they did not see coming, I give thanks.

But, I am tired. And I am allowed. This endless cycle of medical procedures, of surveillance, of surgey, of billing battles, and the like, is not for the faint of heart. And if I want to maintain the strength to continue this journey at the top of my game, I need to allow myself to find a bench and sit and rest. I need to acknowledge sometimes it is raining sideways, with hail, and lightning. Sometimes I have no jacket on. Sometimes my hair is matted and I am chilly from weathering the storm.

In the more than a decade that we have traveled this road, I have learned stamina is essential. I have learned it is often lonely. I have learned that there are no holidays. I have learned that “regular life” still comes for you, even on this Rare Disease pathway.

And if I am honest my biggest struggle currently is my search for a new “release.” I love to walk. Well, I loved to walk. Hours, miles, music in my ears, sunglasses on my face. Apple pay for a bottle of water now and again. It was how I kept myself together in the early years. A new pair of sneakers and a FitBit. My luxuries. Except, my foot. January 2019. Before the world shut down, everything changed. And honestly, the single thing that has been the hardest to overcome, far more than the loss of my breasts, my uterus, my thyroid or anything else this disease tries to take, is the loss of those free, endless, peaceful walks.

Because on those walks I would appreciate the birds, the flowers, and the smiling children. On those walks, I would sometimes sing at the top of my lungs without a care in the world. On those walks I let it all go, I detoured off the main road, and I always found my way back, better, and stronger.

I can’t walk far right now. Every step sends pain up my left leg from the foot that twisted on a child’s chair in my classroom over three years ago. I CAN walk, but it hurts. And instead of setting me free, it makes the weight of the world heavier. And when I try to push, I am reminded of the new pain in my opposite knee, and the muscle knot in the side of my leg, where the body tries to compensate for the limp I try to hide. On the days I work, I count each step. I ration the Advil. I take the stronger medication at night, so I can try to sleep. I wrap it, I brace the other knee that is failing, carefully under my jeans. I am never without the painful reminder of that injury.

I don’t know if it will ever get well. I have not given up trying, but I just don’t know.

And sometimes, like when the Cowden’s syndrome seems to be at play for a bizarre sudden overgrowth of the gums, and the fitting of a crown becomes oral surgery along the way, or when the girl falls miles away and breaks her wrist, or when the HVAC fails with an open-ended repair bill, or when the husband’s company closes, and the list keeps going, and everything changes, I get totally overwhelmed. And I fall behind on Cowden’s things and “regular” things. I kid my daughter that she is allergic to change. I am sure it is something she got from me, besides a faulty PTEN gene and wild curly hair.

I want to take a walk.

But instead, I sit. In the middle of the storm. I sit cold and soaking wet and cranky and lost. And I long for a release.

But, inevitably someone sits beside me. Someone I dearly love. And they hold my hand and give me a hug, and they just sit. And slowly, out of the corner of the sky comes the tiniest ray of sun. And before I know it, there are birds and a rainbow. And being wet doesn’t feel so messy or lonely anymore. And as the sun starts to warm my body and dry my clothes, I find the strength to stand up and move forward. It’s not dancing, but it is moving. Even if it is ever so slowly.

I reach out and hug my husband, and my daughter. And I remember my second favorite release is to nurture my underattended blog.

#beatingcowdens

I’m not afraid of the dark, and other COVID-19 revelations…

Published on June 19, 2020 by beatingcowdens1 Comment

For Cowden’s Syndrome patients, there are surgeries. There are different kinds for different people. But, inevitably there are surgeries.

When most young people talk about being afraid of the dark, many parents dismiss their concerns. They put a night light on for a bit, and they tell them there is nothing to worry about. Because for typical children, “dark” is that brief time in their rooms before they fall asleep.

But, if you have had about a surgery a year from the time you were too young to fully comprehend the gravity of the tumor causing condition you live with… the “dark” also comes awaiting anesthesia on an operating table in a cold room full of strangers. The “dark” always comes after an uncomfortable IV placement and hours of waiting your turn, thirsty and hungry. The “dark” always comes before you wake up in inevitable pain.

The nightlight in my teen’s room came from scraps her dad collected at work. Really cool scraps. And since he’s an electrician, adding the LED was easy.

That light has been in place as long as I can remember. It provided a gentle glow when the nightmares from the PTSD triggered by one too many manually induced episodes of “dark” would provoke relentless nightmares.

It lit the room for the years my presence was necessary to get past the falling asleep part.

You know, that in between place between awake and asleep…

That time when all the thoughts you try to push away find their way in…

And then the dog took my place, the dog and the light.

But bad hips made it tougher for the dog to remain a soothing, breathing presence in the night.

So in January we got our older girl into a bed downstairs and we found a shelter dog at the Brooklyn ASPCA. He was abandoned. Tied to a tree in a park. He was about 6 months old and in dire need of love. (and structure, and training, but MOSTLY love)

April, our older girl welcomed him right away.

About a week into his stay in his new home, Jax curled up on my girl’s bed and fell asleep.

Turns out he is soothed by the breathing of another too.

This week after MONTHS of being home my girl told me it was time to take the nightlight down.

“I’m just not afraid of the dark anymore.”

People who haven’t lived our lives will say – ‘It’s about time’ But, she and I know it’s time, when it’s time.

So many things have happened these last few months during this COVID-19 crisis. Maybe the most remarkable is the family time we’ve shared. We have learned even more about each other, all three of us.

She asks tough questions, of herself and everyone she speaks with.

She holds herself to the same standard she expects of others, and truthfully those standards are so high she’s often disappointed. It’s a balancing act.

She is driven. Focused. Loyal. Compassionate.

She managed a 4.0 AGAIN.

I will pass Tinkerbell off to another beautiful girl, and hope the Pixie Dust blesses her dreams.

“I’m just not afraid of the dark anymore…”

My beautiful girl, with your heart and God’s grace you will change the world.

As for me, I’m not quite ready to part with my nightlight, as we remain…

#beatingcowdens

“…What is essential is invisible to the eye.” Antoine de Saint-Exupery

Published on February 2, 2020 by beatingcowdensLeave a comment

“You don’t LOOK sick.”

Like all things your perception changes over time. When I was much younger if someone asked me for the most hurtful thing someone could say to me – it would have been something you’d be much more likely to guess.

But, years have passed and so much has changed.

Now, hands down, this is close to the top of the list.

I am reminded today of my senior year in high school. Madame Eicoff taught accelerated French. At the time it seemed like a great idea, and the irony that I took seven years of French and grew up to marry a Spanish man was never lost on me. One of the many ironies of life. But in Mme. Eicoff’s class we read “Le Petit Prince” by Antione de Saint-Exupery, and reading and understanding, and feeling that book in French… well, close to 30 years later the emotions are still fresh in my mind. But, I digress…

I don’t want to LOOK sick. I guess in some ways it could be a compliment.

Except it’s not.

Everyone who says it, or thinks it, or shouts it, or whispers it, does it with judgment.

And I guess my question is – What does SICK look like?

In this day and age where tolerance is expected, I feel like we are lagging behind in acceptance of rare disease and chronic illness.

What qualifies as sick?

Is it constant trips to the doctor? Tests? Scans? Referrals to more specialists? Surgery after surgery? Recovery?

Is it having doctors “Google” your disease in front of you, only to have them authoritatively verbally plagiarize the first page of the search when you have analyzed every relevant article on the first ten?

Is it time after time being made to feel you are not credible, or “less than” because no one can make it better?

Is it begging and pleading for pain relief only to be accused of being an addict, when you don’t want a pill at all?

Is it constantly plotting and planning any outing so as to utilize the fewest amount of steps to minimize the often bone crushing pain and fatigue that follows tasks as simple as grocery shopping?

I will agree there is a fine line between simple reality, and self-pity. I dance across it sometimes.

And then I play the music louder and dance right back.

This is my reality. Self-pity has no real purpose. People typically don’t want to hear about it.

But, just because it makes you uncomfortable doesn’t make it any less true.

I am not perfect. I judge. I judge for the wrong reasons sometimes. I judge people who I know nothing about sometimes. I am a work in progress. (As a dear friend often said, “I live in an all glass house.” Nothing about this is intended to throw stones.)

I am learning every day that saying “everyone has something” and really BELIEVING it are different.

I am learning that mine is no more, and theirs is no less and that is perfectly ok.

I am learning that human suffering is a universal, and “sick” carries a stigma that should be eliminated.

Because, if you are “sick” and you “look” it, you are likely “seeking pity.” If you don’t “look” it, but you have an “acceptable” (read well known) illness, you are “brave.”

Mental illness is not visible, yet depression and anxiety plague so many in astronomical numbers. Still we are embarrassed to speak of it, and it is surrounded by shame.

Chronic pain is not visible, not even behind the gritted teeth of the (insert so many people you know here) that you see every day. Living your life with pain that never leaves in and of itself can drive you mad. Think about the last headache you had. The one where you had to close the doors and shut the lights. Now think about it forever…

Real illness is often REALLY invisible.

This is neither a contest or a competition.

This is real life.

We are all real people.

And maybe it’s that simple. Maybe we need to go back to the simplistic view of a young child.Rare Disease Day is February 29th.

I am certain if you yourself are not suffering, you know someone who is.

They may look just like everyone else in the room.

I’ve set goals for self-correcting my unintended judgment of others.

I’ve found an excellent starting point at contemplating that every one of us is deeper than what can ever be seen with the eyes.

#beatingcowdens

WHAT IS A RARE DISEASE?

There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world¹, each supported by family, friends and a team of carers that make up the rare disease community.

Each rare disease may only affect a handful of people, scattered around the world, but taken together the number of people directly affected is equivalent to the population of the world’s third largest country.

Rare diseases currently affect 3.5% – 5.9% of the worldwide population.

72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.

70% of those genetic rare diseases start in childhood.

A disease defined as rare in Europe when it affects fewer than 1 in 2,000 people. (www.rarediseaseday.org)

Show Up

Published on December 22, 2019April 4, 2020 by beatingcowdens4 Comments

It was three MRIs in two days that week in November. That’s too many, in case you were wondering.

One was an extension of an August MRI, which had been a knee follow up. If you’ve been following – you know that long story. If you’re new, the AVM (Arteriovenous Malformation) she was likely born with in her right knee, has cost her 8 trips to the OR so far. It requires frequent attention.

By frequent I mean we see the orthopedist more often than we see most family. And this time the whole muscle band up her thigh had been acting odd. So we reached out to the orthopedist who asked for an MRI of the right thigh before we saw him at 1 PM that Tuesday.

By “odd” I actually mean really painful. Pretty much all the time. Painful enough that walking long distances or kicking swim practice got hard to maintain. But there is so much that hurts it’s hard to sort out where something stops and other things start. The hip had been “out” more than in, and even the chiropractor could not sort out why. The knee pain was persistent enough to leave her wondering if something was wrong again. The shooting pain, tingling and occasional numbness left her wondering if a nerve was somehow damaged.

Turns out, in typical form, she was right pretty much all around. This kid has an uncanny awareness of her body.

The doctor’s student came in first not far past 1PM. The MRI results were up, and he mentioned the AVM. We said, “In her knee?” When he said no, and mentioned one higher up in her leg, I pulled the plug on his practicing and sent for her actual doctor. Turns out the thigh MRI showed a vascular malformation in the back of her right thigh. It was somewhere in between the muscle and the bone, and adjacent to the sciatic nerve. When the images changed you could actually see the proximity to the nerve.

Hip issues – check

Knee pain- check

Shooting (nerve) pain-check

So he asked for an MRI with contrast of the pelvis. “Sooner rather than later.”

But then he had to address the issue that had been of greatest concern walking in the door.

The right shoulder had been presenting an escalating problem all during the fall swim season. She is a powerhouse my kid. She pushes through because she knows nothing else. The awareness that the Hypermobile Ehlers Danlos diagnosis added on in July could at least explain the frequent partial dislocations was little comfort to the body that was living with them. A thorough examination of a shoulder with extremely limited range of motion left us with orders for an MRI arthogram of the right shoulder. It was time to rule out a rotator cuff tear. We left with both MRI orders, and scripts for muscle relaxant and pain meds. We were told to try to get it done by Thursday. Yep 48 hours.

Thankfully Meghan’s insurance, which is the same as my husbands, (insurance coverage and coordination of benefits could take another post, so just trust me) does not require prior authorization for MRI testing.

So I got on the phone with scheduling and secured an appointment at the same facility we had been at at 11 AM for 3:30 PM. That ended up being the pelvic MRI with contrast, something we avoid until we are confident something is there. IV in place, back in the tube for another 45 minutes.

We were able to schedule the arthogram for 8AM the next morning in Brooklyn. But, not before learning that an arthogram was a pretty awful test. As I had tried to barter for a time that would not take her out of school three days in a row, I was told that the doctor had to be on site. I was asking for a quick schedule and I had to take what was available. I was wondering why a doctor had to be on site, but my girl found the answers first.

And as we contemplated the test we sat in two hours of traffic to make the 32 mile trip home.

The next morning we were met by a well meaning tech in a Brooklyn office who thought my girl was going to have the catheter placed without me. You can say all the rational things you want about her being almost an adult. But PTSD is very real. No matter how smart and articulate she is. It is flat out real. And that was about as huge a trigger as there is. So I got a vest, signed consent for whatever I was about to be exposed to and held her hand while she screamed in pain. The catheter was placed. The contrast was injected, and we were back to another 45 minuted in the tube.

The appointment at 1 the next day was overwhelming to say the least. The pain, the anxiety and the exhaustion were palpable. The news that there was no rotator cuff tear was met with simultaneous relief and exasperation. And if you don’t quite understand that it is probably because you have not lived with daily pain so intense you would give just about anything to hear that it was fixable.

Our orthopedist is nothing short of amazing, and he was able to explain to her that it was likely that repetitive partial subluxations caused muscle spasms that left the shoulder sitting just out of place enough that it was incredibly painful. And because the muscles were in almost a constant spasm she couldn’t get it back “in.” He explained the strength of her back and how some muscles are overpowering others. He broke down the directions for PT. He pulled her from the water for 7 days. He started a muscle relaxant 3 times a day.

Then, he had to explain to her that we should head back to Lennox Hill Hospital to see the interventional radiologist who dealt with her prior AVM. It had been three years since we had seen him, in hopes we were done for good. The placement of this “small” AVM (and think relative here, does a splinter hurt? Yep. So a grape hanging out somewhere in between the bone, muscle and nerve probably would too.) was difficult from an ortho standpoint. He felt that embolization, closing off the blood supply to the malformation, would give a quicker recovery than trying to dig it out.

We had an appointment on December 2nd at Lennox Hill. Just enough time to let the muscle relaxants start to kick in, PT to begin, and the shoulder to start moving slowly and painfully.

The doctor looked at the scans, did his own ultrasound and told us to schedule the procedure. We left with a date of Tuesday, December 17th for an outpatient procedure.

The date was carefully chosen by my girl. The 17th meant she’d miss only 4 days of school, and for a junior with a rigorous schedule and a 4.0 that mattered.

Also, the 17th meant she could go to Lancaster, PA the weekend prior to compete in a qualifying swim meet she had worked for years to make. She had been looking at this meet since she began swimming years prior. When she made her first, second, and third cuts over the months leading up to it, she was ecstatic. Now, she was facing this meet with a different set of eyes. The training interruptions caused by her shoulder meant she was unlikely to attain any best times. However her gentle giant of a coach reassured her she should go for the experience.

And it certainly was an experience! We left for home Sunday the 15th with the coach’s approval of three good swims. She knew it was the last time she’d be in the water for a bit.

We left home Tuesday the 17th for at 8 for a 10 AM arrival. This was surgery 19. We knew the routine. She had had nothing to eat or drink since 9 the night before. The wait was long. It was after 2 when we were waiting to leave her in the OR. And as we were leaving the team made a last minute change that they would do the procedure on her stomach. That meant a more aggressive anesthesia and an overnight stay which we were not prepared for.

We were placed in luxury accommodations, better than most hotels I’ve stayed in, because pediatrics was overbooked. We ended up in the executive suite. With nothing we needed. Felix headed home on the bus to gather supplies. He then drove back to the city and met me at the door to the hospital before heading home for the night.

I was glad we stayed. The pain needed hospital level management. The pain medication allowed for some brief silly time. She was discharged around noon the next day.

As I went to gather the car from the lot I was prepared for the hefty overnight fee, but not for the giant scrapes along my right rear panel. Clearly my car had been hit, hard. The bumper clip was broken. I had just enough time to file a claim with the garage before she let me know the transporter had her in the main lobby.

I settled her into the car in terror because she could not get a seatbelt on. I prayed so hard during that white knuckle drive down the FDR and through the tunnel. We arrived safely home 45 minutes later where a neighbor saw us struggling and helped her up the stairs into the house.

As I write, it is the afternoon of 12/22. If you’ve read this far you know it’s been a long month. But the longest days came after we arrived home.

This kid is busy. All the time. She is at school. She is at swim. She is at lessons. She is at the doctor. She is at PT. She is NOT used to being home.

Because I think most of us can relate that when you are still there is time to think. And thinking is hard. When you are still there is time to feel. And often feeling is hard.

My girl is used to being just on the outside in most social situations. I do not know why. I can theorize for days, but it doesn’t matter really. It just is. So when you are on the edge, you get your interactions with people when you are there. When you are not there you get the often difficult to process feeling that you are not missed or your absence isn’t noteworthy.

There were some cards, and some well intentioned messages from well meaning family and friends. They lit up her whole being.

If I’ve learned anything from watching her recover and rehab time and time again, it’s this. When you’re not sure what to do, show up.

I don’t mean in person necessarily. Although those visits can bring brief humor and relaxation. The irony of this technologically connected world is that we are more distant than ever, when it is so easy to show up.

When in doubt, send a text. There is no need for gifts or grand gestures. Offer a face time call. Let someone know you care, especially in the first 4 days when then pain is often the worst. It’s ok to reach out because these phones are all on mute. And you won’t bother someone sleeping, you will only make them smile when they wake.

Whether it’s one surgery or 31, the chronically ill patient appreciates it.

There are so many super-convenient ways to show up.

So many that we are practicing showing up more for others. Because the world is round. And you may not ever repay the kindness sent to you, but showing up for someone else can change everything.

#beatingcowdens and#hEDS

Don’t give up on a (limping) Zebra

Published on November 14, 2019November 14, 2019 by beatingcowdens1 Comment

You know that person in your life. The one who always has a dramatic tale of woe? The one who you tire of hearing from because all they do is talk about their health? Because honestly all that doctor talk is quite depressing. And I mean, you hate going to the doctor. You just went last week and they made you wait 30 minutes past your appointment. But, you gave them a piece of your mind, and you’re just not going back. You are way too busy anyway. You have other things to do, and a LIFE. So you’ll get to it when you get to it.

So, it might be a little hard for you to process that your friend doesn’t have the ability to make the same choices. And that one doctor visit, with the 30 minute delay, they do that several times a month. A 30 minute wait is a rarity. Typical time round trip, including traffic and wait – often 5 hours.

And over time you might have less and less to talk about with them. Because, they missed the party, or cancelled on dinner. They are so dramatic. You’ve had that wrong with you. Sometimes you have to get up and keep moving. They spend too much time being sad. What “trauma” could they possibly know?

While the Zebra is the Symbol for Ehler’s Danlos Syndrome- a group of inherited connective tissue disorders- it also speaks symbolically and metaphorically to the Rare Disease Patients we encounter daily. In our house it is PTEN Hamartoma Tumor Syndrome, or Cowden’s Syndrome, and Hypermobile Ehlers-Danlos Syndrome, for now. With over 7,000 Rare Diseases, it is not “rare” to have one. It is rare for them to be properly diagnosed, managed, and understood.

From National Geographic (BLUE PRINT IS CUT FROM THE ARTICLE)

https://www.nationalgeographic.com/animals/mammals/p/plains-zebra/

ABOUT THE PLAINS ZEBRA

No animal has a more distinctive coat than the zebra. Each animal’s stripes are as unique as fingerprints—no two are exactly alike—although each of the three species has its own general pattern.

No two are exactly alike…

Zebra Stripes

Why do zebras have stripes at all? Scientists aren’t sure, but many theories center on their utility as some form of camouflage. The patterns may make it difficult for predators to identify a single animal from a running herd and distort distance at dawn and dusk. Or they may dissuade insects that recognize only large areas of single-colored fur or act as a kind of natural sunscreen. Because of their uniqueness, stripes may also help zebras recognize one another.

Stripes may help them recognize each other….

Population and Herd Behavior

Zebras are social animals that spend time in herds. They graze together, primarily on grass, and even groom one another.

Plains zebras are the most common species. They live in small family groups consisting of a male (stallion), several females, and their young. These units may combine with others to form awe-inspiring herds thousands of head strong, but family members will remain close within the herd.

They can combine to form a herd, or a small group called a “dazzle.” Seems fitting though…

I used to be social. I mean not overly social. I never traveled in large groups, but I used to dine out. I used to see friends. At least sometimes.

I learned of the old concept taught in medical school many years ago when we were starting to live this overwhelming life full time. It goes “When you hear hoofbeats, think horses, not zebras.” The professionals we look to have been trained to explain us away.

Our medical system is so deeply broken, that our best and brightest are in debt they can barely see past, and in shackles to the facilities they must work for, who are often managed on bottom lines and drug companies pockets as they overbook them and take away the time to look at the whole patient. These doctors are often cognitively capable of doping their job. They are just not allowed.

Some theories on the progression of that quote can be found clicking this link.

When You Hear Hoofbeats Look for Horses Not Zebras

But the reality is this. We are Zebras. In this rare disease community at large, we are a herd of them, as many as 10% of the world’s population.

( And other Rare Facts here… https://globalgenes.org/rare-facts/)

RARE Facts

And we are trying to get treated by many doctors who have been trained, for whatever the reason, to categorically deny the existence of zebras!

It’s easier to diagnose and treat a horse I suppose. It is easier to open the text book, or the app and find the segment on their current malady, remedy it, and send them on their way.

I rarely meet a zebra who doesn’t WISH they could be a horse. We don’t want to be hard to diagnose and treat. But, we are.

I am currently in my 11th month treating a foot injury.

I fell at work and it was handled to the letter of the law there.

My insurance company denied the MRI I needed for my pain. I waited and walked on it for 2 months. When I could stand the pain no longer I received a diagnosis of a partial lisfranc tear, a zebra type of foot injury if you will. I was put in a boot, taken out of work and rested. Then I was taken out of the boot, not because there was proof of healing, but because I’d been in it too long.

A second opinion told me to be patient.

My local podiatrist running point on the case has been wonderful.

I have seen him every other week since March.

It hurts. Still.

I tried Physical Therapy and was sent away after 5 visits because he felt something else was wrong.

I tried ignoring the pain and walking through it. It got so much worse.

Another visit back to the second orthopedist left me feeling like a fool as he told me it was all good.

An MRI 2 days later showed stress changes in the cuboid bone, another “zebra” foot injury.

Unfortunately, those results came my way after 6 days in Orlando.

The boot was on again. This time with a scooter.

Another opinion and another MRI in September progressed the fracture to “non-discplaced” cuboid fracture and sentences me to another 10 weeks in the boot.

My original podiatrist, a stand up guy, suggested Hospital for Special Surgery. He could not get another MRI approved. My insurance had tired of me trying to get better. He thought HSS had a better shot.

In the mean time I had to come out of the boot. Not because the pain was better, but because there is only so long you can stay in before you have other risks.

Countless hours trying to schedule, I ended up with an appointment 10/31. His diagnosis was made without ever having me take a step. “You have too much pain in too many places.” Go see pain management. My husband strong armed him into ordering another MRI, which he did. Except for reasons I’ll never know he ordered only the forefoot…

The results of that MRI showed swelling, chronic fracture of the sesamoid, and a neuroma(that one is fairly common) among other things. He backpedaled a great deal when he called with those results.

My foot is in no shape to return to teaching – yet.

I went to neurology locally. Prior to me getting my sneakers off he diagnosed me with a pain syndrome, because “it has to be.” I did a nerve function test, was told to take a “tri-phase bone scan” and seek pain management. Again, no exam.

So, I scheduled the bone scan and started looking at pain management. Except no one at Hospital for Special Surgery will treat me, even though their doctor was also sending me. And the one specialist I was referred to locally does not take my insurance. I am awaiting an answer for another suggestion. My second call to the local office was at 9 this morning.

I have a ‘hail Mary’ pass going to a PT tonight who I PRAY will think he can help.

It sounds luxurious to be a zebra, right? Spa treatments all day. HA! Because what else would you do when you’re not at work?

It is easier to think someone is being lazy. It is easier to think they don’t care, or they aren’t trying. It is easier to find the green grass in someone else’s yard.

It is easy to judge. To say someone is “taking advantage.” It is so much easier than hearing the truth. Often the truth is hard. And just not as interesting.

I can assure you I have been schooled once again in the value of the lesson “Everyone has something.”

When you are rare, you are left on your own. A lot. Doctors will not, or can not, or are unable to troubleshoot an abnormal/multidisciplinary diagnosis.

I will wait. I will continue to seek answers. I will pray that all the bones in my foot stay in one piece. Because this, this was supposed to be the “normal” injury in the house. It was “just a fall.”

But, apparently as I’m learning, when you’re a zebra, you are a zebra through and through.

Thankful for my “dazzle…” You know who you are.

And some days I feel like its even a little more unique…

#beatingcowdens

#hEDS

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

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

Six Wheels and a Boot

Published on August 31, 2019August 31, 2019 by beatingcowdens4 Comments

At any given point during our 10 days in Disney, our party of three also had six wheels and a boot.

We must have looked unusual to anyone who passed us by.

I traveled with a virtual pharmacy in my purse, which is really simply a string bag on my back, because who really wants to be fancy anyway?

The week before we left we had a PILE of appointments. I think I lost count at 17 in the 5 days. One of them was the orthopedist Meghan sees a few times a year. He was catching up on the new diagnosis of Ehler’s-Danlos Syndrome, paying careful attention to her knee, which by all accounts has been her ‘Achilles heel’ her whole life. There had been pain in that knee for weeks prior, which is always a concern. One of the surgeries she has had repeatedly has been to correct the tracking of the patella. Anxiety is warranted.

This doctor suggested an MRI to confirm the knee was tracking correctly. He also said that she was ‘not to walk consecutive distances longer than one block’ at least until the pain in the knee settled. He prescribed a painkiller and a muscle relaxant. He told me she was not to walk the parks in Disney. She needed to spend most of the day confined to a wheelchair. And while there is gratitude for the temporary nature of this situation, there is a mental and emotional adjustment to enduring it.

This was not a totally new arrangement for us, as the knee has limited her walking in the past. However, there is always the hope that with age things will change. And while Meghan is healthier and stronger than I have ever seen her, the realities of Ehler’s-Danlos and its wear and tear on the connective tissue are real and very present. So, out came the wheelchair.

And, one of my appointments was an MRI follow up for the foot that has been a disaster since I fell at work January 8th.

The initial fall partially tore the lisfranc ligament. Which might have been easier to recover from, except ligaments don’t show on xray. So the initial diagnosis was a sprain. Which was treated with 5 days rest. Then 2 weeks later when the pain was more than it should have been and my primary asked for an MRI, GHI decided I didn’t need one yet and I could wait 6 more weeks. So, I forced the foot into a shoe for a total of 8 weeks post injury before I couldn’t stand it anymore. At that point an MRI finally picked up the partial tear.

I was booted for about 6 weeks. I was pulled out of work and off my foot, but largely too little too late. I returned and handled the foot conservatively, waiting to feel better. Or at least closer to being able to walk like I did on January 7th.

Every other week there have been check ups at the podiatrist. Two visits to a specialist in NYC. Days blended into weeks and my patience started to wear thin. I began Physical Therapy, but even the PT was baffled by the amount of pain in the foot and encouraged me to keep looking for answers.

A repeat MRI was scheduled for 8/2. I obtained the results on 8/14. While the pain in the foot should have been an indicator, I was not prepared to hear that I needed to return to the walking boot, as I had a likely stress fracture in the cuboid bone, and a neuroma in between my second and third toes. This mess courtesy of my body compensating to protect the lisfranc ligament while it healed. I had unconsciously shifted all my weight to the outer part of my foot. I was to limit my walking. By that night I was back in my walking boot ordering a knee scooter for the trip to Disney.

I remember after the fall in January, and even after the diagnosis in March, feeling so happy that I would at least be healed and back to walking before our trip. The best laid plans…

So when we headed out for a 5AM flight on 8/18, we had all our suitcases, a wheelchair and a knee scooter. We checked three bags, and Felix pushed Meghan while I scooted behind. We were a sight.

And after waking up at 2:30 for our flight and traveling via scooter through the Magic Kingdom, I wanted nothing more than to go home. Immediately. I felt like I had done a bad step aerobics video over and over on only my left thigh and butt cheek. You might not realize the strain on the thigh when you rest the knee with a way-too-heavy boot hanging off the back. There was just no way I was going to make it.

So Monday morning I released Meghan and Felix to the Magic Kingdom. I sat in the hotel room. I cried for about 10 minutes. I called my mom. I made a cup of tea. And then I made a plan.

I researched a new set of eyes to consult on the foot when I arrived home. I rearranged our return flight to a more civil time to I could book an appointment for the 29th with confidence. I stretched. I took way too much Advil.

And sometime that morning between the NSAIDs and the caffeine, I started to feel the magic. I sat on the hotel balcony. I strengthened my resolve.

I am not sure at all why it seems everything is so hard. I couldn’t fathom why I had sent my otherwise healthy kid off in a wheelchair, while I sweated inside a walking boot, all the while healing from the Fine Needle Aspiration thyroid biopsy two days prior for thyroid nodules recurring on my previously quiet and well-behaved remaining thyroid lobe. (Partial thyroidectomy 1993 – dx multinodular goiter, 18 years before I had ever HEARD of Cowden’s Syndrome)

In that moment most of what we were facing had nothing at all to do with Cowden’s. And yet, the same choice existed in that moment. I had to decide that I was going to make the best of it. I had to decide that I was not giving up my family vacation for more medical nonsense. I had to decide to find a way to enjoy. Because the struggles, the pain, and the drama would all be waiting for me at home whether I found the “magic” or not.

All the positive thinking in the world was not going to make anyone’s pain go away. Not even a stomach burning amount of Advil and a few strong cocktails could do that. But, I am a huge believer in a positive mindset. And in that Monday morning overlooking the Hawaii themed resort, things started to fall into place in my mind and my heart.

We get 2 weeks a year to spend as a family, free of other obligations. We get 2 weeks a year. And I wasn’t going to waste it.

I joined them later that day, and never left them again. We traveled together – a family of three, six wheels and a boot. We laughed a lot, we argued a little, and generally found the best in each other. We met up with my sister and her family for a super fun night together.

We got to Mickey’s ‘Not So Scary’ Halloween Party for the first time. We saw more characters than we’ve seen since she was quite young.

Finally, after many years of staring at the giant “Hot Air Balloon” in Disney Springs, I got myself on. Because, Why not? Magical.

We found that our resort had a stand serving dairy free Dole Whip – the first time my 16 year old ever had soft serve. Magical.

Some people wonder how we do the same vacation year after year. They wonder how we don’t tire of it all. For us, there is a magic that can’t be explained, only felt. There is wonder in eating safely in restaurants and having access to a bakery free of gluten, dairy and soy. There is joy in eliminating something so basic as food isolation, and sharing meals, sometimes as a family of three, and other times with some Disney friends.

There is magic running into Pluto in the lobby of your resort, or finding the Seven Dwarfs waiting to meet your family.

There is magic in roller coaster selfies, and Figment reminding us to use our imagination.

There is magic in all things familiar, and always finding something new.

There is magic when you seek it, even with six wheels and a boot.

Because there will always be battles to fight. So sometimes they can just wait 2 weeks.

The foot problem is not solved. It’s time to find some serious answers. I won’t open the school year for the first time in 22 years. These next few weeks will be about making plans to heal.

There is no magical solution for my foot. There will be more MRIs, and more doctors.

My patience will be tested in new ways. I am not sure what to expect, and that makes me nervous.

But there will never be a single second that I regret adding 4 wheels and a boot to my own self to enjoy and appreciate the magic with my family.

I know the body can not heal if you don’t nourish the soul.

#beatingcowdens

Sweet Sixteen

Published on August 9, 2019August 4, 2019 by beatingcowdens6 Comments

Dear Meghan,

When we started this journey I never would have chosen this path for you. I never would have selected a life of hospitalizations, tests, rare diseases and pain. I would have chosen an easy life for you. But, I didn’t get to choose.

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And, maybe that’s better. Don’t get me wrong. Everything that you have endured is overwhelming. I wish I could take it away. But, this adversity and these struggles, they have guided you as you have become a young woman I could not be more proud of.

This has been a twisty and winding road, and we are still only at the beginning.

Since you were very young you have had an unimaginable determination to accomplish whatever you set your mind to. You never cease to amaze me.

From the days of Early Intervention and CPSE Speech/OT and PT, you just never quit.

You decided early on that you would do well in school. And you exceed any expectation I’ve ever had. You continue to seek classes because you genuinely want to learn new things. You want to be your best self.

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You have always had the heart of an athlete. You tried every sport you could and constantly had to reroute due to pain. Then, you landed in the pool. The pain there is pain you can manage. You are continuing to set, meet, exceed and reset goals. Despite some seemingly insurmountable physical obstacles, you are an athlete.

You are deeply principled, a trait that has made you the young woman you are becoming. It also makes me want to scream out loud some days. Sometimes balancing socially was a struggle. You look for the good. You make your decisions based on the heart of the people you are with. You would not compromise your beliefs. You had patience. You have friends now who love you for being “fiercely yourself.”

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You have faith. You believe in a God who loves us all. You believe in GRACE and forgiveness, and even though you haven’t had a traditional church upbringing, I am proud of the questions you ask, and your desire to learn. I am mostly proud of your heart.

Every day you are growing, stronger, wiser, and more confident. Every day you are seeking out ways to improve. You are constantly reflecting and growing.

No one outside of our home can fully understand this journey. And while having TWO rare diseases I think may give us magical unicorn status or something, there is no one I’d rather have to traverse these trails with.

I could go on forever. My heart spills over with love when I think of the young woman you have become. I am full of anticipation and excitement about where the journey will lead you.

Know that forever and for always I will always be your biggest cheerleader and your most vocal advocate. Know that I love you to the moon and back times infinity. FOREVER!

Remember – sometimes we don’t get to pick our path. Yet, if we open our hearts we can make the bumpy roads the most meaningful.

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I love you more – ALWAYS

Happy Sweet Sixteen! Enjoy the day!

xoxo

Mom

And if you’ll take a bit of motherly advice – most of it can be found in these three songs….

I Hope You Dance…

Always Stay Humble and Kind

And, Know When To Hold ‘Em…

Forever #beatingcowdens (and #hEDS) with you!

Rare -ER? More Rare? Where to Begin?

Published on July 23, 2019 by beatingcowdens6 Comments

A new diagnosis came our way this week. On top of the existing one. I have wavered between frustration and relief. I have felt some questions answered and developed a lot of new ones. My girl got her words together before I did…

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My name is Meghan. I am a 15 year old high school student. I just finished my second year of high school in a place I love. I am an A+ student, who loves to learn. I am in all honors classes. I strive to learn and grow as much as I am able. I live, laugh and love. I hang out with my friends. I lay outside and tan. I take my dog for walks. I swim for a competitive travel team where I work my butt off in the water 6/7 days in a week. I improve. I grow. I train. To anyone who only knew me superficially, it’d seem like I was living the dream. I’ve got a couple close friends, good parents, a nice house, a dog who loves me. It’s perfect. Right? Wrong.

Here’s the other side of my life most people don’t know; I’ve got some shitty genetic luck. Because on the inside, I am far from an ordinary high school student with the perfect house and parents.

I was diagnosed with my first- yes that’s right, my first- rare genetic disorder when I was eight years old. By then I’d already had so many surgeries it was hard to keep count, and a bunch of random medical problems that never seemed to add up. That disorder is Cowden’s Syndrome. It’s a mutation on the PTEN gene that causes benign and malignant tumors, increasing cancer risks and letting things pop up all over my body that hurt like a mother.

I’ve lived with this disorder my entire life. Hospitals, waiting rooms, specialists, MRI’s, and every other extremely uncomfortable medical situation you can think of became my life. To date, I’ve had 18 surgeries, multiple procedures, over 30 hospital visits, and 25+ MRI’s that have put wayyyy to much metal into my body. From countless medical traumas I’ve developed PTSD, anxiety, and depressive disorders. What doesn’t help that is the fact that I’m always in pain. I fight every damn day. I fight to live my life, and to get my body to the levels that others can reach with half the effort.

Now here’s the best part, so I’ve got a crazy smart mom, who wouldn’t stop poking around to figure out the other piece to this puzzle. Because, we both knew Cowden’s wasn’t it. There was something more, because this debilitating chronic pain in a relatively healthy 15 year old, plus other random symptoms that just didn’t add up, had to come from somewhere. So, we went back to my geneticist. And, guess what? We BOTH got our SECOND rare genetic diagnosis. hEDS( the hyper mobile sub type of Ehlers-Danlos Syndrome). Fun, right?

I know it’s a lot to write at once. It may seem crazy to anyone else who lays eyes on this post. But guess what? One very valuable life lesson I’ve learned from living this life is to stop giving so much of a damn what other people think.

Just live. ❤