Meghan and Ella have been settling in so well together. Jax and Ella are fast friends. April and Ella will be polite acquaintances. Ella is playing, running, eating, and sleeping. She is adjusting to life in our home and seems to be enjoying it.
The most prominent lingering fear surrounded the lump on her side.
We gathered the notes from the vet in Indiana. We put all her paperwork together. The entire Ortega kennel had vet appointments today. So, we headed out for the first time as a party of 6- 18 legs, and 3 tails.
Our veterinarian is thorough. He has treated our dogs well. April needed some lab work for a persistent problem we’re working on. Jax needed to be caught up with some shots. And, Ella, well, that pretty girl needed to get started in her next phase of life.
The vet took her in and did a complete exam. He read the sparse notes we carried with us from Indiana. He looked at the photos of the lump on her side.
He called to tell us that we should start her vaccinations, as he could only verify rabies. He told us he did a heartworm test that was negative for heartworms. He drew blood. That “should be nothing” later this week.
And, since in these Covid times, all news comes via phone from outside the vet’s office, the three of us sat quietly while we waited.
“And the lump?”
“It’s her rib.”
Collective exhaling throughout the car…
“Yes, if you trace along the bone it’ll take you to her spine. Most people never feel it. Ella is very lean.”
Fist pumping and smiling took place for a few minutes.
We live in a worst-case scenario existence. It is so rare that it goes well. And, yet, today, was a win.
Nerves shot for no reason. I have no idea what happened in that office, or why the vet said hernia 750 miles ago. But this is a win. I’ll take it all day every day.
It looks like the rest of life really does start now.
There are things you could do without ever experiencing. Clearly #COVID19 is one of them.
I live in NYC. I have lived here every one of my 46 years.
I was born and raised here. I graduated from public school, SUNY and then CUNY. I work in the elementary school I graduated from. I have lived in the same zip code pretty much my whole life.
I watched my local community rise up many years ago when my young cousin battled Leukemia. I remember that, even over 30 years later, whenever a neighbor I don’t know is in need.
I watched my local community, many aspects of which were decimated by the horrors of 9/11, rise up in indescribable ways.
I watched my community draw together again after Hurricane Sandy wiped out neighborhoods.
We worked together. We prayed together. We loved on each other. We gathered together. We shared what we had.
I live amongst compassion, bravery, dedication, resilience, tragedy, and grief.
I also live amongst some selfishness, stupidity and inflated senses of self importance.
The greatest city in the world gives you all that and then some.
Despite having a small social circle, I am a mother, a wife, a daughter, a granddaughter, a sister, a niece, a cousin and a friend.
I am a patient with a PTEN mutation called Cowden’s Syndrome.
I am a cancer survivor.
I have a teenager with 2 rare diseases, and a brain that runs 24/7.
We are immune compromised.
I am a NYC Public School Teacher.
My husband is an essential worker.
Daily the news reports are often silenced in my house. I know what’s going on around me. A few numbers across a screen give me what I already know. Hope of blossoming spring has been muted by tales that nightmares are made of.
I spend the days trying to remotely engage young minds in math games. It is, if nothing else, a welcome distraction.
Suddenly, this community that does so much better when we can gather together is isolated.
Our friends are sick and dying quickly. To much of the country and the world they are numbers. To us they are humans with names and families. We can not visit. We can not comfort. We can not gather. We are leaving our loved ones at the emergency room door, praying we will see them again.
We, alongside the whole world, are fighting a virus that seems to have a strangle hold on my home town.
People like to make themselves feel better, but the truth is this virus does not discriminate. We can barely even find it, let alone attack it.
We are chasing it. It clearly has the upper hand.
We have been told to #flattenthecurve but, I fear the sheer numbers of us make this so much harder.
My husband comes from work removes all layers, scrubs, showers, washes all outer garments. He gave up public transportation to reduce his “touch points.”
We are grateful for the home we have. We are grateful for each other, for the internet, for Zoom and FaceTime, and virtual church. We are grateful for washing machines and space, and luxuries never to be taken for granted again.
We are grateful for computers that allow for everything from Advanced Biology to voice lessons and test prep.
We leave for 2 walks a day at off peak hours.
The stores I used to walk in and out of because I could, are saved for when lists accumulate and there is need.
We order food a few times a week, a calculated risk carefully played out because the restaurants that have openly supported our fundraisers through the years, deserve our support now as well.
The schedule has slowed from its chaotic pace. Swim season just isn’t. There is no college search right now. Doctors are cancelling, and rescheduling. Routine check ups are on hold. And honestly I don’t mind. Even this chronically painful foot is waiting its turn while really important things happen at the local hospitals.
We take this call to social isolation really seriously here.
Selfishly, I might even enjoy a little of this forced family time. A year from now my girl will likely have her college chosen and be starting her transition out of our nest.
Having Cowden’s Syndrome has done a lot of work on my perspective through the years. I’ve learned that you can’t keep waiting for it to be over. That’s true of everything in life.
A dear friend has told me often, “You can have it all, just not all at the same time.”
You have to live each day, from beautiful to unspeakable. It is the only way to preserve feelings of compassion, empathy and focus on the greater good. You must laugh and cry, and scream and yell, and feel all the feelings.
I have scanned 3 and a half years of letters Pop wrote to Grandma in the years he was deployed during WWII. Those years preceded a marriage that lasted over 70 years. I think of them all the time, but even extra these days. I think about how hard it would have been to socially distance from them, but also about the lessons they could have taught all of us in patience, resilience and sacrifice for the greater good.
I’ll use some of the next days to read every one of those letters before uploading them to create a hard copy to be shared in my family for generations.
There is a lot to be learned from the “Greatest Generation.”
Sometimes I get angry at flippant or arrogant folks I see, in person or on the news. The people who think they are too good, or exempt from this global pandemic. The people who don’t think they have to do their part.
Then, I decide to focus on the overwhelming number of people who are doing whatever they can to make this better. All those essential workers we learned about in the first grade unit on “Community Helpers” are the ones I focus on with gratitude.
I am not better than this virus. I am just as susceptible as the good people across the globe who are struggling with these infections.
I isolate not out of fear, but out of respect.
I isolate out of respect for those who can’t.
I isolate out of respect for our first responders and essential workers.
I isolate out of respect for those who are living with this virus.
I isolate because maybe one less person will get infected because I did.
I miss the way our city has come together in all other times of tragedy.
I miss hugs, and offering comfort and being comforted.
I will message the people I miss so much, and check in on them.
And, instead of complaining the time away I will spend more of it in prayer for those who need very much not to feel alone, reaching out through the technology I’m blessed to have, with gratitude that if I am forced to isolate I have a comfortable home and a few of my best friends to be with.
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.
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)
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…
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.
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…
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.
We don’t post the awful pictures. We leave out the ones where we look less than our best. Social media allows us to live in the delusion that everyone’s life is “perfect.”
I’ll be the first to admit the ugly truth. It’s far from perfect. It’s not neat or clean. There is no bow. And yes, most of the time I do delete the awful ones. Those images and experiences are seared into my soul.
I prefer to go with the theory that the body forgets pain… At least your own. It’s how we survive. But, if you live watching a loved one in pain – you know the memory will not slip even a tiny bit. If you hold your child as they cry out in pure agony, or when they are weak from fever, you can remember where you were each time. If you watch your teen wince simply through a series of steps, or check to make sure they are breathing as they sleep the better part of two or three days at a clip – you don’t forget.
Recently, Meghan was in a production of “Beauty and the Beast Jr.” with the Staten Island Children’s Theater Association, Inc. She loves the experience of working with a theater group and has been with this one a few years now. It is such an enjoyable time in her life. She spends months of Saturdays with genuine quality people preparing for the show.
And during those same months she is thriving academically.
And training for swimming.
And making regular appointments, routine, follow-up, and therapy.
And contending with seasonal allergies that are nothing less than relentless.
And, she is, every single day a person living with Cowden’s Syndrome and the effects it has on her, both physically and emotionally.
The show was almost 2 weeks ago. It took me a little bit to get my thoughts together.
I think I have it now.
Living with chronic illness, chronic pain, chronic life altering physical ailments, is in some ways similar to putting on a production.
You set your sights on what you want to accomplish – large or small. In some cases it’s going to a party, and in other’s it’s going to the backyard. But, you plan for it. You practice it. You consider every detail. You may have to select the right costume and even stage it so you don’t sit or stand for too long. You know just what your body can do and there is a short window where you have to make it all work.
The rest of the time you are backstage.
You are in pin curls and shorts with a tank top.
You are rubbing your feet. You don’t have make-up. Backstage and rehearsals, these are what life is made of. But, we don’t take the camera out while we are there.
Everyone’s preparation is different. I can only write about ours and confidently say everyone has some level of preparation before the “show”. Some people make it onto the stage more often than others. Some people have fewer performances, but make them count as much as they can. Those people take nothing for granted because they have no idea when they will step out into the “stage” again.
That’s what social media looks like to me, anyway. Every picture is on the stage. Some have more than others. But, because of the world we live in it is easy to judge based on what we see without considering what we DON’T see.
The night of the show Meghan went to the diner with her friends. She got home close to midnight. It was Sunday, and a school night, and I had already decided she’d stay home the next day. It wasn’t a reward. It was a necessity. The amount of energy her body had expended could not be recovered quickly. She slept until 2pm the next day, and was asleep again by 9.
I sent her to school that Tuesday – ready to roll. She swam at 5am, did a full day of school, an hour of physical therapy and another 2.5 hours of swim practice.
Probably not the best plan.
The physical therapy is in place to try to strengthen her overall. Joint laxity, ligaments subluxing… all sorts of cracking, popping and shifting. The search for answers is on, but in the mean time we do PT…
By Wednesday she couldn’t move. She made it to school – barely.
Her IEP meeting was that afternoon, and we had lengthy conversations about all sorts of physical and emotional needs relating to school. We also spoke at length about the service dog we are in a holding pattern waiting for, and how he will fit in to the big picture. So many questions…
Thursday we got in the car to go to school. By 7:30 I had her back in her bed. She just could not. She slept until early afternoon Thursday, followed it with and early bedtime and slept again until early afternoon Friday. There was a little less sleep as the days went on but it was a slow process.
The show that was so incredibly worth it in every way – cost her a full week in recovery time. Her body hurt so deeply. This is not an out of shape child. This is a person living with a chronic pain and illness that is affecting her body in ways not even the doctors fully comprehend yet.
But I didn’t post pictures of her wincing in agony, or sleeping for days.
To the outside world she doesn’t look sick. She’s 5 foot 8, full of muscle and extremely well-rounded.
She works hard at it.
Some days are easier than others. But every day she works. She is fierce and relentless and she does not quit.
Next time you catch a photo of her smiling or singing in a pretty dress know that it took a lot of staging to pull that off, and there will likely be a lot of recovery on the back end.
But, she wouldn’t have it any other way. Not for a moment. She is my inspiration to remain…
As of today, my records show 78 appointments between the two of us since January 1st. That’s 148 days. More than one every other day.
78 scheduled appointments. Some appointments are close and some are far. Some are routine, some are emergent, some are therapy and some are follow up.
Every single one of them interrupts or controls a day, depending on its location and wait time.
So what do you do?
This is reality. This is chronic illness x2. This is what it is. These appointments are non-negotiable. They also can easily become all-consuming.
What do you do? How do you keep it in check? How do you keep it from swallowing you up? How do you keep it from winning?
I thought I knew. I though I had it all mapped out for a while. But, the oppressive weight of chronic illness can be crushing.
It happened slowly to me.
I was carrying a bucket. Every appointment was a drop. Every hour wasted in traffic was another. Every time I picked up the phone to fight a medical bill, every time I juggled a full time job, and the full-time extra curricular calendar of my teen, the bucket just got more and more full. Now, I carry the bucket. All the time. Everywhere I go.
And it’s full. Really full.
So I try not to spill.
But there isn’t much room for anything else at all.
I’ve said no to one too many events.
I have turned away from one too many dinners.
I have declined get-togethers because I just don’t feel like I can breathe.
I spend the whole day with this bucket. My mission is to keep it from spilling. It holds too many things too valuable to spill even a drop.
I say out loud that I am fitting chronic illness into our lives. But, many days I feel like I am fitting life into our chronic illness.
I am not complaining. There is so much I am grateful for, and so many things I would never ever change.
I am however simply trying to keep from drowning in my bucket.
It is possible to have conflicting emotions and have them all be true.
It is possible to feel so tired you wonder how you will function, and simultaneously grateful for the very things that made you so tired.
It is possible to be full of angst about a schedule that just will not quit, and fully excited that your child is capable of outrunning you. Finally. I waited a long time to be more wiped out than she is!
It is possible to feel worried about this week’s pending orthopedic appointment and the news it may bring, while gratefully celebrating your child’s swimming medals from the week before.
It is possible to have anxiety about when the next surgical procedure will come, while gleefully extending the number of days it’s been since the last one to record setting lengths.
It is possible to have a deep unshakable sadness on certain days, months or even seasons, while still appreciating the best daughter and husband ever.
It is possible to feel like having and loving someone with a chronic illness leaves you in shackles, while every day being grateful for them and time you have to hug each other.
It is possible to live with people who literally complete your soul, and still sometimes need time with other people. Just because.
It is possible to feel lonely in a full house by the design of your own head and not the people in it.
It is possible to be a pit bull advocate for your child, while wishing you could be a happy yellow lab and get the same results.
It is possible to really want to spend time with friends, but to posture as if you’re too busy so as to protect yourself from inevitable schedule changes and conflicts without having to say “no” again and again.
It is possible to want to talk, but to realize you haven’t much to say that isn’t about topics too tough for casual conversation. (Note to self – try to watch more TV.)
It is possible to have such a deep understanding of the rare disease plaguing you and your child that you are sometimes terrified of the path you will need to travel. It is possible to be terrified, while full of gratitude for the warning system and vigilance that will allow that path to be long – together.
It is possible to know the road in front of you is still arduous while looking back and simply saying, “Wow, we’ve come SO FAR!”
It is possible to fully understand the reality that life is uncertain for EVERYONE, while processing the gravity of a rare, cancer causing genetic disorder.
It is possible to love the ones your with, while still deeply missing so many of the ones that have gone before, some even decades before.
It is possible the mail order pharmacy uses a dart board to determine their policies each time you call.
It is possible the hospital actually does have BOTH insurance cards in the computer in the right order, and they are just messing with you.
It is possible that the china closet may just not get cleaned and washed for the holidays, and that for the first time you may just be ok with it.
It is possible that the entire holiday shopping list will be handled on line, because those are the hours that work for me.
It is possible that some days, weeks, and months leave you with more conflicted feelings than others.
I’m aware of Breast Cancer. As a survivor now of 6 years and the daughter of a 21 year survivor, I am aware as I dry from my shower facing my mastectomy scars every morning, that breast cancer is reality. As my Facebook feed and my memory are both too full of those we have lost and those who still face this disease, we are aware. What I wonder, is how much help is the awareness? It is a topic that could be debated forever, but I’ll change gears first.
Something else I am very aware of is the PTEN gene located on chromosome 10q23, and the perils its associated mutations can cause. So when the PTEN Foundation let us know that 10/23 was designated PTEN Awareness Day, we were all in.
This blog has, for years been designated to the ups and downs of this mother- daughter duo dealing with Cowden’s Syndrome, the diagnosis we both received in late 2011 after a PTEN mutation was first diagnosed in Meghan, and weeks later in me.
The few years following were an absolute whirlwind of appointments, scans, screenings and surgeries. We worked to keep our heads above water and just exist. We considered keeping my job, and maintaining honors status in her school quite the accomplishment.
We were told things over and over, like “don’t let it define you…”
I’ve got some news for you. You can only walk so far into the fire without retaining the scars.
True awareness of PTEN for us comes with comprehension of the gravity that you have to remain in a vigilant stance of preparation, awaiting attack from your own body at all times. PTEN patients have ridiculous cancer risks pretty much all throughout, and the VIGILANCE required to stay ahead is utterly grueling.
We are faced with choices to keep the most high risk organs, or remove them prophylactic ally. We are asked to play the odds. With our bodies. All the time.
With Meghan the AVM (Arteriovenous Malformation) in her right knee, though quiet now, has caused damage she will deal with forever. She is 15. God willing she will walk on those legs another 80 years, each day aware of the pain, and of the symmetry removed from her body forever.
When you have to be vigilant, you have to plan. There are trades. You have to decide if you’ll miss school with friends and fall behind in classes or give up the breaks designed to recharge you.
There are no breaks. February – months away has 3/5 of its break and 2 other days devoted to appointments. Martin Luther King Jr. Day in January. Yep – that one too. Don’t worry, the brain MRI is scheduled for April break….
You have to pick and choose. And the decisions are hard. You want to give it all to everything, but HOURS of your world are wasted in bumper to bumper traffic, waiting for the hopeful news that you have another 6 months before you come back. And if, in fact you don’t get that news the schedule is tossed and it’s game on for scans, analysis and biopsies.
The pain. No one can really tell us yet from why, but it seems to exist throughout. The fatigue. Maybe the thyroid issues, maybe some immunological stuff. Maybe some connection yet to be determined. But it’s real.
It’s as real as the number of times we had to decline invitations before most people stopped asking.
We’re not blowing you off. We’re holding it together – by a shoestring.
Chronic Illness is hard to live, and we get that it’s difficult to watch. But, it’s real. And short of a cure, it will never “run it’s course.” It will not BE us, but it will be PART of us – FOREVER.
“You don’t look sick…”
“You don’t look anxious…”
No, as a matter of fact she looks strong and determined. She’s been practicing for quite some time.
Sometimes I have to bite my tongue to keep from replying, “You don’t LOOK ignorant either – but at least you can fix that if you WANT to…”
Our rare disease journey has opened our eyes to not only PTEN disorders, but “Lhermitte-Duclos disease,” “Nail-Patella Syndrome,” “Lynch Syndrome,” “Spinal Muscular Atrophy,” “Muscular Dystrophy,” “Neimann- Pic Disease,” ” Neurofibromatosis,” “Acute Myeloid Leukemia” to name just the very tip of the iceberg. I am more aware than every that everyone struggles.
I’m also a big fan of real pure awareness, for the sake of learning something about other humans I share the planet with.
One of the humans I share my home with has grown up in a totally different direction courtesy of this disease. And while I am grateful for her diagnosis, as it surely saved my own life, I am sad that she has had to see so much, and manage so much already in her life.
So today, on 10/23, if you’re not living with it yourself, direct yourself to http://www.PTENFoundation.org, or the PTEN Facebook Page and learn an little more about PTEN.
My own girl is working every day to make herself better, physically, mentally and emotionally. When I have down days, or I just don’t feel well, she reminds me to forgive myself. “You have it too Mom.” Indeed I do, and it’s quite a ride…
Together we prepare for the climb each day – and seek out that ‘One Perfect Moment’
For as much as this disease has taken, I am grateful that she is starting to take back control, and is finding her voice as an advocate for herself and others. (And I love listening to her sing too…)
Bring It On the Musical – One Perfect Moment Lyrics
Bring It On the Musical – One Perfect Moment LyricsI’m not freaking out, I’m really okay
I’m totally chill or I will be someday
‘Cause I’m so near the top but there’s so many mountains to climb
There are plans to be planned, drills to be drilled
‘Cause this dream that I’ve dreamed is becoming fulfilled
And I plan to enjoy it but right now, I don’t have the timeFade in on Campbell, an average teenager almost grown
Close-up on average grades from the average life she’s known
Now zoom in the lens on the rest of her friends as she stay alone
Doing the work, getting it right
‘Cause I know we’ll have to be practically perfect
So I’ll go above and beyond and pull through, this I can do
All that I’m asking is one perfect moment in time
I’m seventeen, there are so many things that I can’t control
If I start to freak, or feel weak, I focus on just one goal
Turn down the panic, attack this routine like it owns my soul
Turn up the music so loud that it swallows us whole
And then there we are, we burn like a star
We’re safe inside the world we know
Then suddenly I’m in prep for the climb and here I go
High in the air, there is a moment just before you start to fall
Live in that one moment
I know that if I can just stick the landing
Then I’ll know that somehow my life will be fine
And I’ll go through the rest of my life understanding
What it feels like to shine
The future’s full of mysteries
So please let this be mine
My one perfect moment in time
I remember as a young girl, and even a teenager, having the phone pretty much attached to my ear all the time. I remember being so excited when we got a cord long enough for me to bring the phone into my room. I remember calling people, and being so frustrated at busy signals. I don’t remember much of what I talked about for all those hours, but I liked it.
When I went to college, I went with an electronic typewriter with a 4 line display. It was state of the art. In my dorm there were computers in the common area and people were just beginning to really Email. There were no cell phones. We knocked on each other’s doors and spread word through friends when we were getting together.
It’s now been 23 years since I graduated from college. I’m coming to understand the generations before me. Perhaps some of the discontent with things changing was a foreboding sense of where it was leading.
I don’t go far without a cell phone in hand. I “google” like it is my full-time job. I’d rather text than call, and I am guilty of putting only the “perfect” images on my social media accounts. I “keep in touch” through photos of friends children. Some of these children are teenagers now. Many of them I have never even met.
I wish “Happy Birthday” on Facebook after it reminds me, and rarely send a card. I delude myself into feeling “in touch” when really we’ve lost all track of each other.
I’m watching a generation grow that thinks its acceptable to post all kinds of photos of themselves, inevitably trying to look older than they are, in a forum where nothing is truly private at all.
I’m not saying we had it all correct by any means. I was guilty as the next of trying to impress “popular” kids, or to fit in. There were mean kids. There were those who isolated. We passed notes. But, we didn’t post our comings and goings for the world to see. I was blissfully unaware of who went where, unless I was there. If we took photos it was the real deal. There were no filters.
The internet, and the social media craze that has followed is the proverbial “double-edged sword”.
Living with, and having a child with, a rare genetic disorder means I have to do most of our research here. Most doctors lack the time, the knowledge, or the desire, to entertain my instincts. I may not be a doctor, but I am an expert on Meghan. I have been able to learn through trusted medical journals and intelligent internet connections, more than I would have ever been able to learn 25 or 30 years ago.
Meghan has had medical problems since day 1, and I have had the privilege of advocating for her since then. I have “met” parents through online support groups, and have soaked up their advice like a dry sponge. Parents go out of their way to help other parents, and it is a community like no other. Without the internet I would have been traveling this journey largely alone.
There were multiple diagnoses before the PTEN Hamartoma Tumor Syndrome (Cowden’s Syndrome) diagnosis in 2011. And, truth be told, I suspect there are still a few more coming our way. During each step of the journey I have been able to connect with medical professionals and parents in ways that leave me forever grateful.
I am skilled at dealing with the insurance companies, the mail order pharmacy, and the collection agencies. I am on-line so often, printing medical explanations of benefits, or fighting for treatment courses that I know are necessary.
I have become well versed in the laws surrounding Individualized Education Plans, (IEPs) and have secured necessary accommodations for an honor student battling PTSD largely from the fallout of a rare genetic disorder.
We fund raise for the PTEN Foundation, in hopes of one day soon allowing a patient powered registry that can lead us to treatment, and maybe even a cure.
All of this is possible through social media and the internet.
These are the same forums that allow people to think they are “in touch” without ever hearing each other speak. These are the same forums that allow teens and adults alike to think it is ok to be insufferable or mean because they don’t have to look the other person in the eye while they do it. It is these same forums that claim to bring us all together, that are causing what I fear is irreparable social damage. A generation of children who aspire to impossible ideals and feel they are not good enough, are growing up. They have the world at their fingertips. Will they have the skills to access it through human interaction?
I don’t know what it is like to live anyone else’s life. Maybe there are similarities, or maybe my views are odd. I blog to give an honest account of life in this house, with these challenges, because I too have found comfort in knowing I am not alone. At least theoretically.
I am always busy. Sometimes I don’t choose it, and sometimes I choose it without realizing it. I am so used to being in motion, not having a full agenda is confusing. It is also very very rare. My only speeds are “go” and “off”.
Chronic illness can easily run your life. When every ounce of strength must be used to create the illusion of normalcy, there is not much time to be “normal”. When you can not predict the health crises that exist daily, or the new ones that crop up at a moment’s notice, it is hard to make plans to do much.
We are a family of 3. My child is an only child. She has all the benefits, and all the downfalls of that status. We have extended family. I have friends. Long time friends. Old friends. I know I could rely on them if it became time to wave the white flag. But they are busy too. And our time will come in a few short years when our children are off on their own.
My child does not have a built-in network. My child has PTSD, and incredible anxiety. She can sometimes have an abrasive personality. But, she has more integrity and compassion in her than just about any other human I know. You can’t pick any of that up off her Instagram. Or her SnapChat. To really know her you’d have to talk to her. The old-fashioned way.
That very network that has allowed me to learn so much, to do so much, and to help so much, has also caused harm. For both of us.
For me, it represents the easy way out. Aside from a few support groups, I know people will tire quickly of hearing the same story over and over. So, it is easy to click “like,” post a few comments, and have at least a visual in my head of what’s going on. But, it also leaves me with feelings of inadequacy. Why can’t I get us to the beach? Why can’t I plan day trips with actual humans without fear of having to cancel?
For her, it is a constant reminder of a “normal” life that she doesn’t have. Whether it’s pain, medical appointments, food allergies, or anxiety, there is an isolation inherent in this world of chronic illness.
She speaks of the “Sword of Damocles” with regularity. The history channel gives this explanation History Channel- Sword of Damocles (Go ahead, and click the link. It’s a worthwhile read.) This analogy explains a life hard to comprehend, and impossible to describe.
The internet probably saved us. Social media brought me to some of the smartest parents, living variations of our life.
Social media altered the scope of human relations with consequences we will see for generations.
The irony of it all perhaps is that this message reaches you through the double-edged sword of the internet.