I brought my husband. Well, technically he brought me. And he lugged the giant contraption down the stairs and into the back seat of our “big enough for most things, but not this thing” Sonata.
The screen on his iPhone had cracked and he needed to go to Apple. I needed an outing worse than a puppy who has been crated too long.
He dropped me off at the door. He rode the scooter through the parking lot to meet me. Apparently, like so many other things, its a LOT more fun when you don’t need it.
I laughed in spite of myself at the sight of it. I was also glad our teenager had decided to stay home. The sight of it all would have likely been just too much.
People stare right at you, while simultaneously judging you as you drive this thing. The local mall lacks the tolerance of Disney World. In fairness, from face on, it looks like you’re using wheels for fun. It’s not until I have passed, if they bother to look, that they would see the giant walking boot resting on the knee pad.
Today is 8 weeks and 1 day since I’ve been “booted” again. 57 days.
I have had more surgeries in my life than I can count. Not a single one of them kept me down for 8 weeks. This foot has been messing with my life for over 8 months.
Double Mastectomy – back at work in 5 weeks.
Hysterectomy – back in 2 weeks.
I once had arthroscopic knee surgery over a long weekend, and was back on the 4th floor in my classroom the following Monday.
Vascular, over the February break…
Biopsies, a day tops…
We always say recovery pain is the best kind, because you know it’s going away.
And yet the answer to “Does your foot feel better?” still remains “Not really.”
My kind and compassionate local podiatrist, in a combination of frustration at the injury that won’t heal and my insurance company making it harder for him to treat me, has advised a visit to Hospital for Special Surgery. I’m sitting. Foot up, phone in hand, waiting to try to schedule.
I rode that knee scooter all over the mall. I rode it into the grocery store too. Quite simply, I’m tired of being locked in my house. It is truly a ridiculous and ingenious contraption.
If you asked me 2 years ago if I would ever… the answer would have been “NO WAY!”
Except if I keep learning anything through these years of life with a rare disease, and also just life, it seems to be” never say never…”
I had a boatload of things I wasn’t going to do as a parent. I’m pretty sure the first one was undone about three hours in… right after the anesthesia from that c section wore off…
Wasn’t going to… feed certain things, watch certain things, give certain things, etc. etc. And then you find yourself learning that all the plans in the world are suddenly invalid as you just try not to damage the tiny human.
A great deal of my pride was left behind in the OR where she was delivered.
I lost a bunch more of it through a slew of breast biopsies prior to the double mastectomy in 2012.
The uterine biopsies, the hysterectomy, the “cancer screening” human exams took a bunch more.
And there are few things quite as humbling as a breast MRI of your silicone implants.
I was never “in fashion” but I used to take great care in what I wore. Things were dry cleaned. Stockings and heels were worn daily.
Then there was back pain that seemed only better in sneakers. Coupled with a significant weight loss my wardrobe evolved into jeans, t shirts and sneakers. May be a dig at my early judgment of “too casual” teachers…
Life, at it again…
If we are open, and able to be introspective, we are changing and growing all the time.
I am in a painstakingly slow process of relinquishing control.
Control is really largely an illusion anyway.
Faith, trust, hope, and the ability to embrace what the future has in store, these are my current goals.
I’m a work in progress.
So if you see me and my knee scooter, be kind. You may even see me up and down the block. These are, after all, desperate times…
We’re done being caged up. I need some fall air. I am ready to get well. Since my foot isn’t cooperating, I’ll start with my mind.
One of those phrases hard to hear, yet typically true.
I woke for work so many days wanting an extra day off, to do nothing. A break from it all. A weekend escape. Me time. On my terms.
And here I am. Not on my terms at all. Finishing my seventh week in the “boot” with no end in sight, and daily trying to be diligent about restricting my movement. All in the hopes the foot will finally heal enough for rehabilitation, and a return to the daily grind. Isn’t it ironic?
Seems to be how life goes a whole lot. A dear friend once told me, “You can have it all, just not all at the same time.” Sage advice that I have frequently pondered through the years, but especially these last few weeks. She stopped by and spent an amazing few hours helping to make some of the time melt away.
Someone sent beautiful flowers to my house last week. They sat on my table and every time I rolled past them on my scooter I smiled. Unexpected random act of kindness that lifted my heart.
Someone sent me a text out of nowhere, just checking in. The smile it gave me lasted for hours.
There is one who checks in to keep me involved in the day to day outside of what is currently a very small world.
Another sends me Instagram messages. Simple Smiles.
A dear friend stopped by with a bottle of Coke and left it in a bright pink bag on my porch. She had taken the time to pick one up with my last name on it. I try to generally be healthy, but a sugary real coke is often a weak spot. She knows. I will save it for a time when I’m really starving for company. Maybe tomorrow?
I’ve been focusing as a chronically ill person would, checking boxes, and completing a variety of appointments that are necessary for the management of Cowden’s, yet sometimes interfere with my work day.
I’ve cleared a cardiology intake, and can now hope I need nothing more than an annual drive by. I have “stacked” several appointments for Meghan on a Monday in January. It will cost me the day (in my optimism that I’ll be there…) but it will save us a world of trouble going in once instead of three times. I have filed claims, copied, faxed, sorted….
Meghan got 2 wisdom teeth pulled Friday, right in front of a 4 day weekend from school. I’ve set her up with a new eye doctor for her annual screen on Election Day. The eyeglass forms from the Union are on my table. Felix and I need exams as well. I’ve spoken to pharmacies, stayed on top of prescriptions and supplements.
6 month dermatology screen for both of us next Wednesday.
I have a few projects, a few things I hope to get focused on. But, I am easily distracted. And I am focused on my apple watch, and my step count, which I have been instructed to keep painfully low.
There are some nights, after using up my steps at any of the above appointments, that I’m stuck in my bed pretty early.
I have an app on my phone that has me reading the Bible more than I have done in far too long. I love the way the books are illustrated in drawings first.
I also have an app that I can waste hours on bouncing bubbles.
I’m up to date on the DVR. I watched “Diagnosis” on Netflix.
I’ve been researching some alternative pain management.
There is always a way to stay busy. There is always something to research, to sort, to shred. There is ALWAYS a way to better yourself, regardless of the restrictions.
What I don’t do is pick up the phone. I don’t really reach out. I’ve been battling for quite some time, and I work hard staying afloat. I get the job done, and I always will. Failure is not an option. Becoming a completely isolated introvert however, is.
It’s hard to reach out when you’re struggling. I do my very best to broaden my senses and put small gestures in the direction of those I know might be having a hard time. Just because you haven’t heard from them, doesn’t mean they wouldn’t love a check in. In this technology world where its so easy to say “I’m thinking of you…” We should all try it more.
It’s not about grand gestures. It’s about knowing you’re missed. I’m not always as good about it as I could be for others. But, I’m working on it.
That starts now. Because if I feel this way, other people do too. And if we can all check in and share a smile in whatever way we know how, it will make a difference.
And right now, I’ve got plenty of time, anxiously trying to heal this foot while…
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.
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.
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.
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.
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.
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.”
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.
I love you more – ALWAYS
Happy Sweet Sixteen! Enjoy the day!
And if you’ll take a bit of motherly advice – most of it can be found in these three songs….
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…
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.
My Grandfather told me many years ago that I was “difficult to work with.” He said it with love. I don’t remember the exact context. I do remember it was said with a smile.
And he was undoubtedly right about that, like so many other things.
I had a boss a few years back that told me, “If you continue to hold everyone to the same standards you hold yourself to, you will always be disappointed.” Strong words, but also not inaccurate.
I am a lot to take.
I am intense almost all the time. I have a mouth full of words that last long past the attention span of anyone I strike up a conversation with.
I am passionate about things I believe in.
I make lots and lots of mistakes. But, I truly do my best all the time.
So I just sometimes struggle to understand why it seems everything I touch or encounter is a battle.
I spend hours upon hours sorting through medical claims. I look up who paid what, and when. I call on bills that need to be refiled. I take names on post-it notes with dates and times, in case things don’t get rectified.
I file out of network claims, and then I watch them processed in error. I make three phone calls to try to sort out the change in policy, which was simply just a mistake no one will own. I take names again. I am told to wait 6 more weeks for hundreds of dollars owed to me to be reprocessed. It’s only a little about the money. It’s mostly about the notebook, and the folder with the copies of the claims, and the alarm in my phone to remind me when I need to follow up on the call again.
I send medication to the mail order pharmacy because we have no choice. And then I wait for them to screw it up. That sounds negative, but it’s simply accurate. They have an entire notebook in my world to help manage the 9 mail away prescriptions between us. There is a perpetual box on my ‘to do’ list which tells me to check on the progress of any refill.
I make appointments. The list has 20 specialists between us. They vary from twice a week to once a year. A psychologist once told me not to let the appointments interfere with “preferred activities.” So there is a matrix with the impossible task as the ultimate goal. Except none of the 20 doctors know about the other 19. Or the full time job. Or the high school honor student’s schedule. Or swim practice. Or theater. Or voice lessons. Nor do they care. And I get it. They can not hear everyone’s story. So when I call to try to carefully place that appointment in a very tiny window of time, they are always unhappy with me. They think I’m being unreasonable. And maybe I am. But, I can’t imagine why I wouldn’t TRY to get everything to keep her physically healthy and still let her be a teen.
I deal with unexpected schedule changes. Like when I carefully stack 2 appointments in one day, and then one has to move to right smack in the middle of a week long summer internship that was planned forever ago, because now instead of two doctors with Friday hours at the same facility, one has Monday and one has Friday. No overlap. So I erase, and juggle. Except I’m not great at juggling in a literal sense, so one got cancelled and hasn’t been rescheduled. Actually two… because summer can not be ALL about doctors. Nor can every day off. But, neither can every day at work or school…
“What do you mean you’re not going to reschedule today?”
So much of our condition relies on screening. Early detection is a blessing. It is the key. It is also tedious and time consuming. It is possible to be grateful and overwhelmed simultaneously.
So much of this is case management. And, when last I checked my master’s degree is in education, not medicine. But, with no one to coordinate care I have to guess a whole lot. I have to decide if 9 months will be ok instead of 6. I have to decide when to push the doctor for more lab tests when the fatigue won’t quit and the thyroid is ok but the spleen…eh, no one is quite sure about the spleen…
And there are doctor’s whose pride won’t let them return a call because I haven’t seen them recently enough.
There is the genetics appointment lingering again. Because maybe Cowden’s wasn’t the WHOLE answer…
And the “normal people stuff” like the seemingly never-ending root canals because my stress is played out in the jaw clenching that overtakes the episodes of sleep. That is on the occasions everything is calm enough for me to make it to my bed.
Or the foot injury. The “rare” lisfranc ligament partial tear. Close to 6 months later. Not a soul wants to hear me tell the story again. No one wants to believe that it still hurts badly enough that I haven’t take a real walk since last fall. I’m not lazy. I’m horrified by the state of my body in the absence of real physical activity. I am trying to be patient. My patience is running out alongside my sanity.
And the IEP. Oh, the Individualized Education Plan… and the meetings. Over and over and over again… Meghan is on the waiting list for a service dog. She has PTSD and generalized anxiety disorder. The dog is coming. The process is wearing me out.
I am a lot to take.
I am often “difficult to work with.”
I hold myself and others to a high standard.
I am intense most of the time.
I am tired.
I am so very tired of fighting all the time.
There is no choice though. No choice at all.
So, in the mean time I will be here. Strengthening my resolve. I may bend, but I will not break. I will continue to strive to show my girl that she can have a rare and currently incurable disease, while excelling at school, at sports, being active in the community, and being a generally decent human.
Last month we walked out of a screening appointment. It was not critical. It was an hour behind. We rescheduled. Also a valuable lesson.
I am tired of fighting, but I am far from done.
As my Grandfather said, I am “difficult to work with.”
I am also loved. I am flawed. I am also forgiven.
When I have no more, I put my hands together and ask… and I am never disappointed.
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…
Life is very much like a carousel… you must hold on tightly. It will not stop until it is over…
I always heard about the body changing every seven years. I never gave it much thought.A quick Google search brings a couple of interesting articles.Every Seven Years…
This has been on my mind a lot the last few weeks. I’ve never been one to spend New Year’s Eve wishing a year away, or blaming one for my misfortunes. However I do have a rock solid memory for dates, and 2012 is a year I will never forget.
Digesting our PTEN diagnoses from the fall of 2011, 2012 began with thyroid biopsies for my girl. It was the year of risk assessment and triage for us. In February there were breast and neck MRIs for me and another in a long string of embolizations for an AVM in Meghan’s knee. In March came my prophylactic double mastectomy that showed DCIS on pathology. In May of that year came my hysterectomy, as well as breast and an external pelvic ultrasound to assess my then 8 year old. In June she had another thyroid sonogram as suspicion of her nodules increased. She also had an MRI to assess the progress the embolization made on her AVM. Insert recovery times, and “normal people stuff,” and that took us only to the end of third grade.
In the summer she had kidney and bladder ultrasounds, and an MRI of her pituitary gland. I added an abdominal MRI to baseline hamartomas that to this day have continued to slowly outsize my spleen itself. That MRI was repeated in November, and we ended the year with an uptick in concern about my girl’s thyroid.
Things have not really calmed down since then, and I have never counted surgeries and procedures from 2012 alongside any other year to see if it truly was our most medically active, because by all accounts the year you spend trying to process this diagnosis is the longest one ever.
Over time we have adapted to our lives, dancing in between appointments, carefully trying to schedule doctors and surgeries around life, and not the other way around.
Its a valiant effort. Sometimes I am successful at it, and sometimes it is an epic fail. Regardless there is no alternative but to keep pressing forward. Adapting and changing.
Sometimes the adaptations make us stronger. Other times they make us more efficient. I am not sure the impact of the adaptations on emotional health. I am focused on not letting this diagnosis take away my life. I am determined to live my life in spite of it. But, sometimes I do wonder. I keep in touch with virtually no one. Unable to make plans for the likelihood they will need to be cancelled or changed. A deep fear of not being able to hold down a non-medical conversation reverberates through my soul.
So as I was hopping around on the crutches this morning it occurred to me that it is now 2019. It is seven years since the epic 2012. This year is shaping up to be one for the record books.
It is hard to tease apart the Cowden’s from the “Normal People Stuff,” because at this moment life seems to be a bit of an all-consuming medical drama.
That confuses people who see me smiling through the day at work with a large boot attached to my left foot for well over 6 weeks. It makes people I run into at the mall think all must be well. I smile. Most of the time. Frowning gives you uglier wrinkles.
Today was to be the day the podiatrist freed me from the walking boot. Instead he told me to trade it for crutches in the house. The boot is starting to hurt my knees and my hip. My foot is simply not ready to be full weight bearing. The partial tear is not healed. In fact it seems no better, if not worse than when I fell at work on January 8th. The delay in diagnosis caused by a denied MRI likely made things worse.
I was given names for a second opinion, and cautiously handed a script for PT, which cautions the potential therapist to be “NOT TOO AGGRESSIVE” with my foot. The weather is getting warmer. My pleasure comes from new sneakers and long walks…
Simultaneously working the juggling act with a few other issues, I have seen just about a doctor a day for the last week.
Fortunately my daughter’s brain MRI for lesions being watched for the last year was gloriously “unremarkable” on Tuesday and I am grateful for the little things – because they are the GIANT things.
My ENT was perplexed, as most doctors are. The hearing test was normal. The fluid that I feel was not visible to him as it had been to the other doctor. He spent a good deal of time listening. He decided he would offer me a tube to drain the ear with an anticipated 5% success rate. (No thanks) and an MRI of my head which would show the ear. He said he was 99% sure the MRI would show nothing. Then he corrected himself to say he was 99% sure it would show nothing in the ear… but I should anticipate incidental findings that will likely need follow up. Whatever. Brain MRI with Cowden’s is not a bad idea anyway. MRI tomorrow.
My thyroid labs, after 3 weeks on the new medication regimen indicated the need for another change. I’ve been having heart palpitations, and the highest blood pressure reading of my life. I’m awaiting the arrival of the new dose, and setting up the next blood appointment, all while wondering if this is an exercise in futility as it looks like the rest of my thyroid will need to be removed in the not so distant future. My partial thyroidectomy was in 1993. Clearly the body keeps changing.
I had a routine bone density screen on Weds. I also went for my abdominal sonogram to monitor the spleen. It’s a 45 minute ultrasound that requires 4 hours of fasting, but checks the spleen hamartomas for growth, while evaluating the liver and kidneys. Except it was done in 6 minutes.
Apparently there is a drop down menu somewhere when you order an abdominal ultrasound. I think the first item is Aortic screen. The “Complete” that I needed was a few clicks down. I’ll need to reschedule. But, I am looking forward to hearing the random screen I didn’t need was “unremarkable.” Results pending…
I am a different person than I was 7 years ago. We all are I suppose. If you evaluate your life in 7 year increments, you will definitely note changes.
The question is, will you be happy with them?
I am stronger. I am more fit. I am more confident in my knowledge. I am less drawn into drama.
I am also less social. I am less knowledgeable about world news, and more knowledgeable about rare diseases. My attention span is shorter. I am easily distracted. My brain is always on. Sometimes I catch really important things. Other times I torment myself…
I am introspective and honest.
Happy is a relative term.
I’ve spent a lot of time watching Netflix. More than I ever have. I picked up Grey’s Anatomy and keep hearing Meredith quote her mother.
“… But the carousel never stops turning. You can’t get off.”
Two weeks of as much rest as I can possibly stand.
The trouble with having a rare disease, as I’ve said so many times before, is that you ALSO have real life. You ALSO have “normal people stuff.”
After that early January fall, I was quite consumed with my shoulder, and pretty bothered by the flippant attitude of my breast surgeon. All of which still stew inside of me as the real possibilities of breast implant associated illnesses are all over the news this week.
And then there was the new endocrinologist on March 12th. It was a backwards progression of sorts. A referral from the surgeon who has been following me since my PTEN diagnosis. I never really settled into a new endocrinologist after I disagreed with my long standing one in 1998. He was bothered by my questions. I bounced in and out of a few. I found them mostly arrogant and out of touch. I held with one during my pregnancy in 2003, but ditched him soon after my C-section. I had a primary running bloodwork, and I was guiding treatment based on my labs until the Cowden’s Syndrome surfaced.
At that point I was handed off to an endocrine surgeon. The possibility that the half of my thyroid which remained after a partial thryoidectomy in 1993 could fall into the 35% lifetime risk of thyroid cancer that comes along with a PTEN mutation was real. We agreed on annual follow-ups using the ultrasound in her office. All was smooth until February 26th, when she saw some calcifications on the ultrasound. She got spooked and wanted a “fresh pair of eyes.” She referred me to an endocrinologist in her hospital.
He sent me for a “proper” ultrasound before my appointment. He then, with some promising knowledge of what a “Cowden’s” thyroid looks like, went through the images from the exam. He told me that there were some potentially concerning features, but nothing that appeared urgent. He questioned why I had not been using the formal ultrasound at the hospital, as there was now no baseline to compare it to. In another episode of wondering why I don’t ask enough questions about my own care, I had to let it pass…
He told me the radiologist would read the ultrasound with more concern than he did. He was right. So there will be another ultrasound in August. We’ll talk about the status of that right thyroid lobe then. In the mean time he offered me a change of medication that in 30 years on Synthroid no doctor has ever entertained. Monday I will begin a lower dose of Synthroid combined with a twice a day dose of T3, liothyronine, in hopes that I might get some of my sought after energy back. With a standing order every 3 weeks to monitor blood levels, at this point, I have nothing to lose.
So back in circle to the “normal people stuff” intertwined in this balancing act. April 18th is still the earliest day to contend with the chronic ear pain and fluid I’ve been handling since September. It doesn’t matter that it has headed into my mouth and is bothering my teeth. That it is somehow messing with the nerves so badly that I ended up with a root canal specialist yesterday. Of course, she won’t touch the painful tooth because no one can know exactly what is in my ear. Pain management. Maybe it’s Cowden’s. Maybe it’s allergies. Maybe it’s simple. Maybe it isn’t.
And then there is that foot. Snagged on a kids chair in a third grade classroom in the middle of teaching a lesson. It knocked me on the floor. I was so worried about the shoulder, and the breast implant that I ignored the foot. At least I tried to.
About 2 weeks after the fall I saw my primary and asked for help. She suggested an MRI. GHI promptly denied the MRI and told me to ice and elevate as much as I could, and reevaluate in 6 weeks. I was left with no choice but to continue a job that kept me more hours on my feet than off. By March 6th I couldn’t take the pain anymore and headed to a podiatrist. He evaluated the foot, ordered Xrays, and got them read within hours. By the next day he had the MRI approved and I went in for the exam. About 72 hours later I got a call asking me to come in to discuss the results.
That’s never an actual good sign.
So when I walked into the office in two sneakers, I kind of suspected that I wasn’t going to leave in both of them. And I was right.
MRI revealed a partial tear of the lisfranc ligament in the left foot. Apparently this is an incredibly rare injury, (insert shock and surprise here) that the podiatrist anticipated before the MRI. Apparently you can only get this injury through a twist and fall, you know, like catching it on a student’s chair mid-step.
I got a soft cast, and a giant walking book. I got pulled out of work for at least two weeks, with no idea when the good people who review these cases will approve this as the clear work-related injury it is.
I have another appointment with the podiatrist tomorrow.
There is State testing at work this week. I’m always there for testing.
But right now I’m actually testing my inner strength. Resting my foot.
I’m preparing for my clearance to return to work. I’m preparing for my ENT appointment. I am preparing to get my ear fixed. I am preparing to get ready to lose the other half of my thryoid. I am preparing for another plastics consult…
And all the preparing in the world won’t matter. Because life will come in the order it wants. That is the lesson for Cowden’s Syndrome and real life…