I am so tired of fighting.
All the time.
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.”
When I have no more, I put my hands together and ask… and I am never disappointed.
Through God’s Grace alone we remain…
The call came to my cell phone on a Friday afternoon a few weeks ago. It took me a few minutes to process that Sharon from the Teddy Atlas Foundation was telling me Meghan had been selected to receive the Dr. Theodore A. Atlas Humanitarian Award. The award is named for a local physician who epitomized the concept of what it meant to be a physician through more than a half century of people centered care on Staten Island.
I knew of Dr. Atlas, who did most of his work before my time, because I followed the work of the foundation, started by his son, Teddy Atlas Jr. The Dr. Theodore A. Atlas Foundation is a name known to locals who are inspired by stories of people helping people. I had watched this foundation through the years, grateful that people who genuinely want to help are not afraid to just do it.
I know I stumbled, and may have sounded like a bumbling fool as I asked her to repeat herself. “Yes,” Meghan will accept gratefully, I replied without asking. I was given the date and time for the dinner.
I’m not sure either of us really grasped the enormity of the honor until we looked up the event on line.
We had just struggled to get 100 people in a room for a fundraiser. Here they were looking at close to a thousand – from big names to community favorites.
When she learned she’d need to give a brief acceptance speech, she took a deep breath, and then thought. A whole lot.
We talked about humanitarian, as a word and as a concept. The more we bounced it around, the more we both knew the concept suited her. Meghan has always wanted to make a difference. She has always done what she can to speak for those who can not speak for themselves. She is not sure what her future career will be, but she is sure that she must know she is ‘helping.’
We talked about quotes. I gave a few suggestions. She came back to me with Dr. Seuss. She nailed it. As usual.
The Lorax speaks for the trees. They can not speak for themselves, so the Lorax advocates for them. It resonated with her.
Here is Meghan’s speech:
Good evening, I am extremely humbled and grateful to be standing before you tonight.
When I was 7 I never thought my life would turn out this way. I never thought I’d be accepting a prestigious humanitarian award. When I was 8 and my life was turned upside down by a diagnosis I didn’t understand, I was in shock. By the time I was nine, I realized that no one even knew what my disease was. Then I realized that if I didn’t do something, there was a chance no one else ever would.
Cowden’s Syndrome is a mutation on the PTEN Gene, a tumor suppressor gene. Because of this disorder I have extremely high cancer risks, and grow a lot of tumors. I am in the hospital being poked and prodded on a regular basis. I am constantly scanned and monitored. Every time I step into a doctor’s office I am holding my breath, praying that I will get even just two more months of peace, without a procedure. I am 15, and I have had 18 surgeries. This disease has tried to break me over, and over again. And, because of this, with each passing day I become more determined to overcome these challenges, win my daily battles, and lend a helping hand to others in need.
I am living the life of a rare disease patient. I am closely acquainted with the downfalls and struggles of my disease, and others. Because of this, I am fully cognizant that there is very little awareness about rare genetic disorders. Some of these disorders are fatal, and others can just make your daily life torturous.
My disorder specifically is sometimes classified as an “invisible illness.’ No one sees my scars and my struggles because I don’t ‘look sick.’ I present as a healthy and intelligent teenager. When I was little I used to wish all my scars were able to be seen, and that they were all over my skin. I thought that maybe people would start understanding what patients like me go through a bit more if they saw some of the ramifications of these diseases.
Cowden’s Syndrome has not just impacted my body. There are undeniable, severe mental ramifications that have come with my struggles. I have a depressive disorder, an anxiety disorder, and PTSD secondary to medical trauma. In no way am I even close to normal. I have to fight ten times harder for what someone else can do physically. I struggle mentally to live a normal live and get past the anxieties that control my daily life.
I have been bullied since elementary school there are some days where I come home, curl up in a ball and cry. It’s really hard to make friends when you’re at the doctor so much, and it’s even harder to deal with teenage drama when you’ve had to act so much older then you are your whole life. Whether it’s been because I’m different and they don’t understand, or because I catch on to things quickly, I always find myself that kid with the target on my back for bullies.
People like to say to ‘not let your hardships define you.’ Personally, I think that’s idealistic and impossible. The events that you have gone through in your life have created who you are. Sometimes I wonder what life would be like if I did not have this rare disease. Then I shake myself out of it, and realize that I’m a pretty cool person who has the ability to change lives. And, that if I didn’t have Cowden’s Syndrome, I wouldn’t be growing into the person I am.
My mother and I host annual fundraisers called “Jeans for Rare Genes.” They started out with all of the profits being donated to the Global Genes Foundation, a 401C3 organization that raises money around the world for the purpose of providing support to patients with rare diseases. Then, the PTEN Foundation, an organization specifically devoted to patients with PTEN Hamartoma Tumor Syndrome (Cowden’s Syndrome) was born. Once this organization was created, we began fundraising for them. To this day, our annual fundraiser is one of the biggest donations that goes into this organization and I am proud to know that our work is making a difference.
There are less than 2,000 diagnosed Cowden’s Syndrome patients in the US. Sometimes it is hard to see the light at the end of a lonely tunnel. The PTEN Foundation is close to putting up a patient powered registry that will start things moving in the right direction. We have a long way to go. We need funding for research, and then we need medication and hopefully a cure. There is far too little awareness about Cowden’s syndrome and all rare diseases in general. They are very real, and very present in our society.
This honor will serve as a stepping stone for me. My awareness efforts are not nearly done. In fact, I view this as a new chapter in my life, where I will have the confidence and courage, needed to continue raising funds and awareness, and that I may hopefully be a part of changing the lives of other rare disease patients.
In the words of the Lorax in the famous Dr. Seuss book, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”
With the number of people who care in this room tonight, I look forward to a future of hope and promise. Thank you.
The speech ended with Teddy Atlas committing $5,000 to the PTEN Foundation on Meghan’s behalf.
It made me extra glad that Kristin, the PTEN Foundation President, who has become a dear friend, had made her way to New York from Alabama to celebrate with us.
Yesterday, November 15, 2018, NYC was almost totally crippled by an unexpected snow storm. In all of my years here I have never ever seen anything like it. I have seen worse storms, but NEVER the crippling state of things I saw yesterday. I left work to get Meghan at school at 2:20. On a busy day it takes me 22 minutes to arrive at her school for pick up. At 4:10, after crawling for HOURS and getting so close, I was being pushed up a hill out of a pile of snow. I was in such a state, feeling frantic that I was literally not able to get to her. And even though I knew she was safe, it was a helpless feeling I’m not looking to duplicate any time soon.
At 4:15 she sat in my car while we turned around to head back. At 5:35 the 8 mile round trip was complete, but we weren’t out of trouble. Three hours on the road and I never saw a plow or a salt truck.
My parents agreed to drive in their very capable pick up truck. My husband made it safely off the bus from Manhattan. It was far from the poised and put together departure I had hoped for, but we got there.
I’m not going to lie, there were a few moments there where I thought, “WHAT THE HECK? Why does EVERYTHING have to be surrounded by drama?”
But I pulled myself together. There are far bigger problems in the world. We made it. We were safe. We were together. Meghan’s dear friend greeted us there. I looked around and soaked up the enormity of the honor my 15 year old was receiving.
I looked around the room full of energetic, generous spirits.
I looked in the booklet on the table and found this. Despite a few minor errors, the idea that this was published here. Now. For everyone. Well, it kind of blew me away.
I listened while Ciaran Sheehan sang, with chills down my spine. Having played leading roles in two of Meghan’s favorite Broadway shows, “Les Miserables,” and “Phantom of the Opera,” he was the one she wanted to meet. And she did.
My girl is not perfect. She struggles. We argue. She sometimes acts like a teenage girl and I have to remind myself she is one. She is intense. She is focused. She is determined. She is deeply principled.
She is learning to find balance. She is learning to laugh. She is learning to pause. To believe. She is letting herself be successful. She is working daily on becoming the best version of herself. She is my hero.
And Meghan, as one of the “trees,” I am happy to have a “Lorax” like you.
Because as Dr. Seuss said, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”
You are way more than
You’re going places kid. And I’m so grateful to be along for the ride.
Recently I asked that Meghan’s “Present Levels of Performance” on her IEP be updated. She no longer receives many services, but I find great value in keeping this section current.
There is a great deal of misunderstanding involving Individualized Education Plans (or IEPs) and many people feel only children who struggle academically have an IEP. This is just not true.
My daughter has had one in place since Kindergarten. She has consistently maintained high honors, and as a matter of fact was Salutatorian of her 8th grade class, and is in an intensely challenging International Baccalaureate program at her high school.
IEPs by definition, are to “Individualize” the Education Program as needed. Meghan’s needs are not academic, as much as they are residual connected to the Cowden’s Syndrome, the PTSD, and the medical trauma. The resulting anxiety affects every area of life, and is far deeper than “teenage angst.” We work extensively outside of school to address this in many ways, but sometimes we need the school to be on the same page.
Much like you give a medical history to a doctor when you see them for the first time, and you update as situations change, the IEP is to be fluid and updated as changes occur so all personnel will be aware of Meghan’s needs.
I make a habit on the first day of school of copying a few key pages of the document and giving it to her teachers. Even though they have access, and technically it is their responsibility, I am also a teacher. I get the pressures placed on us. So, I make their lives easier by giving them what they need and an invitation to reach out to me with any questions. Her teachers are historically receptive and appreciative.
This year I was reviewing that section on the document realizing how much was no longer accurate, and how it should be more detailed.
I sat with Meghan to write the summary below:
Meghan is a 15-year-old sophomore in the IB program at School. Academically she is consistently above average in her classes, attaining high honors every marking period for the 2017-2018 school year.
She is a student athlete as well, participating on the School varsity swim team, as well as Trident Aquatics, a 12 month competitive swim program on the Island.
Meghan has several medical diagnoses. The most far-reaching is “Cowden’s Syndrome” a mutation on the PTEN (tumor suppressor) Gene, causing benign and malignant tumors as well as vascular malformations. Recently PTEN mutations have been correlated with low levels of (infection fighting) immunoglobulins, which Meghan also suffers with.
Because of the low immunoglobulin levels Meghan has frequent infections that often require antibiotics for resolution. She suffers with gastrointestinal distress with each course, and needs to avoid gluten and soy. She also has an allergy to dairy.
Meghan’s medical challenges are far-reaching. She has had 18 surgeries, 8 of which have been on her right knee. There was an arteriovenous malformation (AVM) in that knee. While it has been controlled, the long-term effects will last forever. Meghan has leg and foot discrepancies on her right side. The blood was restricted from flowing to her right foot for so long, that it stopped growing 6 years ago. The left foot is a full size larger than the right foot. That right-sided weakness has been repeatedly treated in physical therapy, but still presents as a struggle with stairs, and long walks. While she endures these activities, they can cause pain and excessive fatigue, and extra time may be necessary between classes located far apart.
Meghan had her thyroid removed in 2014 and the resulting need for synthetic medication has yet to be regulated. Her current endocrinologist follows her 4 times a year, adjusting, tailoring, and trying to balance her levels.
Meghan had 2 D&C procedures during 7th grade. Those procedures yielded precancerous tissue in her uterus and prompted the need for birth control pills to try to stop the cellular growth. Those pills have also been difficult to regulate and balance.
Meghan has been hospitalized countless times in addition to her surgeries. She has also undergone over 30 MRIs and close to 10CT scans, each requiring IV. She spends countless hours being poked and prodded at doctors, monitoring her cancer risks. She is acutely aware of her mortality at an age when most teens are barely aware of their social interests.
In the spring of 2017 Meghan was diagnosed with Post Traumatic Stress Disorder, secondary to extensive medical trauma. She was also diagnosed with major depressive disorder.
In the fall of 2017 Meghan began to develop panic attacks. Subsequently, she has also been treated for panic and generalized anxiety disorder.
She sees a social worker weekly and has guidance on her IEP in school. She sees a psychiatrist monthly who manages the medication, which currently consists of and antidepressant and another script for panic attacks.
The panic attacks were well controlled for a time, but flare up in acute anxiety. This summer saw several severe episodes. We are working together to help her through all of this.
Meghan is waiting for a service dog, which should arrive in the next 4-6 months, to address the PTSD. In the mean time, we are teaching strategies to deal with necessary stress, and tools to eliminate unnecessary stress.
I presented this document to the team to update the IEP. I was a little startled when I was met first with a challenge on the diagnoses. No problem I told them. I would send the doctor’s notes.
I love her school, I do. But, I was in fact also told “She doesn’t LOOK sick” and “She doesn’t LOOK stressed.” While I had to breathe a few times before responding, I came up with “You’re welcome…”
We’ve worked quite hard on all of that. My girl has goals. Life goals.
Last week Meghan was approached to remove the section regarding the D&Cs from the document above. She declined. She was pushed, and told the information was “far too personal.”
Forever practical, Meghan reminded them the document was about her, and should include factual information.
Again pressed, she reminded the staff she helped write the document they were holding. She wanted and NEEDED her teachers to understand the validity behind her anxiety and PTSD symptoms.
The final time they told her the information was too personal she reminded them that she had done nothing wrong, and had nothing to be embarrassed about. Meghan is a factual child. She likes actual truth being reported. She knows better than to be embarrassed about truth. She knows ugly truth is a real part of life with Cowden’s Syndrome. She also knows that secrets give power to things that don’t deserve it.
These things happened to her.
She did not ask for them.
She did not cause them.
She will not hide them.
She will not apologize for them.
She will not let them define her.
But the things that happen to us do change us. HOW they change us is the only thing we can work to control.
I will continue to work the Mom end to get this updated.
I am beyond proud of her growing confidence, and her desire to educate.
I am proud of her desire to be a scholar and an athlete in spite of all the adversity.
I am proud of her respect for the clock as she grows as a swimmer, and her desire to be the same as everyone else, by beating the same clock.
My girl is, and shall remain
And that is why we continue to work on the journey towards treatments and a cure.
Please consider joining us or making a contribution. You can reach us at email@example.com
I haven’t written regularly and it is wearing on me. I keep putting things in front, waiting to be ready, to be finished so I can focus. Except life is really busy. And it keeps getting busier. So, while I’m really dating myself…
While I will never ever possess even a fraction of Ferris Bueller’s 1980s spontaneity, I am constantly working on this reminder. I’m a work in progress.
Today we stopped. We sat together. We watched a movie. We enjoyed each other. It was fun. I need to remember to do it more often.
I find myself struggling to keep the story together, while respecting the privacy (she does preread every post before they publish) of my teenager, and maintaining the authenticity of this journey we are on together.
I always try to be positive, and to put a positive spin on everything. It’s how I cope. It’s how I press on. But, it is the same reason it’s been so hard to write.
The cold hard reality is that even when we are conscious of our many blessings, sometimes having a rare disease, THIS rare disease, really just sucks. And, as much as you work to not have it define you, it becomes so intertwined with who you are, that it can become difficult to tease the two apart. In the 6 years since our diagnoses she’s, gone from 3rd to 9th grade. Those are some pretty formative years.
The struggle to stand apart from the disease that takes so much of your time and energy is real. As a teen the level of self-awareness is naturally high. The fear of judgment is one we can all remember. The desire to stand alone, stand apart, and fit in, while not compromising yourself is one I remember as if it were yesterday.
My girl is strong. She is physically strong, as she recovers from countless surgeries, and fights her way back into the pool time and time again. She endures physical therapy. She navigates countless flights of stairs, and is constantly challenging herself to do more.
She is mentally strong. She has a work ethic that is impressive, and grades to back it up. She reads. She questions. She thinks.
She is morally strong. She has ethics that often impress me, and she will not step away from who she is, even for a moment.
She is emotionally strong. She refuses to stay down, no matter what life tosses at her. She handles stress, disappointment, and struggle, with a poise many adults I know are lacking.
She is strong. I know she is strong. Anyone lucky enough to meet her knows she is strong.
She also suffers with PTSD, and severe anxiety.
I see no conflict between her being strong, and suffering.
I watch the age of diagnosis for PTEN mutations getting younger. I see in this blessing and curse. It is a wonderful thing to have the mechanism by which we can survey and protect. It is also a difficult thing for an intelligent child to have to shoulder.
Clearly, her PTSD is PTEN related. There are only so many surgeries, hospital stays, IVs, blood draws, MRIs and other medical dramas one can face before memories are haunting.
The anxiety- we’re working on it.
I have some theories. And I will press until every one of them is shot down, or validated. Her history indicates that she has always had some metabolic issues. Some were first addressed by an alternative medicine doctor beginning when she was 2. I watched things resolve that I thought could never get better.
When her thyroid was removed in 5th grade, just shy of 4 years ago. I knew then it was not a good time. I also knew it was not our choice, as the recent biopsy result with 19 nodules, 5 of them suspicious for malignancy, prompted the endocrinologist at the major cancer center to force the total removal.
Fortunately, it was a benign thyroid. However, that thyroid, no longer in her, now needed to be replaced synthetically.
I was 20 when I lost half of my thyroid. That was hard. This, well, it was just unimaginable. Because, anyone who understates the importance of the thyroid for every single function in the body, in my opinion is under-informed. The endocrinologists are trained to look for one number on a piece of paper and make every decision based off of that number. Except, we are people. We are individuals. We are not numbers.
It took just shy of 2 years before even that number, the TSH (Thyroid Stimulating Hormone – which by definition should not IMO be the “go to” number in someone with NO thyroid to stimulate) stabilized. It also required a change of endocrinologists to get one to listen to me practically scream that her body was not converting the synthetic T4 to T3. I may not have been a good chemistry student, and I may not fully understand WHY she does not process synthetic anything very well, but I confidently know it to be true. This new endocrinologist was willing to give a low dose of T3 a try alongside the T4. Finally the “magic” number stabilized.
Looking back I believe I was lulled into a false sense of security.
There was so much going on those years. Middle school is tough for every student. Factor in 7 surgeries in 3 years and its easy to see where things got complicated.
Looking back again, maybe I should have seen or thought… but there really was no time.
Excessive menstrual bleeding – nonstop for months, led us to an adolescent gynecologist. That led us to a pelvic ultrasound, which subsequently led to a finding of “abnormally thickened uterine lining.” The D&C pathology showed cellular irregularities, highly unlikely in her then 12 year old body. But, we live as the “highly unlikely.”
Even as we were nudged towards hormones, I should have seen. But, it’s easier to see in reverse.
The need for hormones to thin the uterine lining was non-negotiable I was told. The IUD was an unacceptable solution to both of us. So, she was given progesterone.
The medication is pure evil, I am convinced. She handed me the pill bottle one morning and told me to get rid of it. She was done with it. I shudder at what could have become of things if she did not possess the inner strength I spoke of earlier. Her level of self-awareness is eerie at times. I am grateful.
So, we went a while with nothing. And the body began to act up again. This summer we agreed to try a birth control pill. And, still, several changes later, things are not where they should be.
Most doctors want to make all sorts of sweeping generalizations. They want to put everyone in a neat box. Life is messy. Rare disease life is RARE by definition. When you are 1 in 250,000 you just don’t fit in the box.
I first noticed the anxiety increasing in middle school.
“Middle school is hard for everyone…”
The PTSD diagnosis finally came in May of this year. But, I knew even then it wasn’t the whole picture.
This summer we almost cancelled Disney. The pain from her periods had become intolerable, totally crippling her. I called the gynecologist in desperation. She was glad to hear me finally agree to the birth control pill. I was desperate and hesitant, the progesterone nightmare was not lost on me. It was the classic “rock and a hard place” story.
High School started out a little tumultuous. The school she thought she’d attend underwent major changes over the summer. She ended up relocating a few days into the school year. But, she loves the new school. The kids are nice. She has more good teachers this semester than in 3 years of middle school. The high school swim team was strong. So why was the anxiety quickly melting into full scale panic attacks?
She works so hard to keep it all together. She tries to keep it hidden. She is so aware.
The panic settled back into general anxiety, but that anxiety spread to just about everything.
In December I adjusted my work day through FMLA to be able to pick her up at the end of every school day. We spent a lot of time working through so much.
And somewhere in the middle of working through all of this, as people were so quick to offer medication for anxiety, I had some thoughts.
Why had the gynecologist and the endocrinologist NEVER spoken about interactions between their respective medications when both were prescribing hormones?
Simply because her lab tests for thyroid function remain in the laboratory range, there was never a question. No one noticed this actual human being in front of me is struggling.
Why are we so quick to write off the unusual as impossible?
Why won’t we try anything to keep a bright, articulate, in touch 14 year old OFF as many medications as possible?
What if her T4 to T3 conversion, which was always a problem, was masked and not solved by adding a synthetic T3? What if this anxiety has been building for all these years, and exploded at the insult of additional, yet necessary synthetic hormones? What if the answer is harder than adding more medication? What if it will take research, theories, and some “out of the box” thinking?
How do I convince them she’s worth it?
While my PTEN Facebook friends are sending me article links, I am composing my thoughts before writing a more organized, clinical version of these questions to her doctors.
All of this while seemingly insignificant head congestion is cramping her style. I am not sure exactly where it fits in.
The ENT ordered an MRI of the brain to check the sinuses. Turns out the sinuses are clear. Except there was an incidental finding of a brain lesion 9.5mm of undetermined significance. The new neurologist is confident its not a problem, but we’ll have a follow up MRI on February 20th.
In the mean time – no one will touch the congestion other than to tell her it’s “anxiety.”
She deserves better.
So, we will press on.
One year ends and another begins. We’ve grown, we’ve learned, we’ve laughed, we’ve cried. Yet still there are more questions than answers.
I have a feeling that’s pretty much how it will be.
This is life
Don’t you sometimes just want to hit the delete button?
We were going through vacation photos and I was struck by how easy it was to eliminate images that we found unflattering. We were able to simply click a button – and they were gone, for no one else to ever see. Eventually our only memories of the trip would be reliant on the images that remained, so in some ways it was almost like those unflattering moments never happened. Right?
I love my social media accounts. I do. But sometimes I scroll through feeling a bit down, inadequate and lonely. Everyone looks so happy. Everyone is surrounded by friends. Everyone’s house is clean. Everyone is taking wonderful vacations. Everyone is resting in their pool on a weekday afternoon…
Then I realize I do the same thing. No one wants to see a picture of my unmade bed, my tears of frustration, or the times when the family doesn’t really like each other too much. No one wants to hear videos of me bickering with insurance companies, or dealing with the day-to-day realities. No one wants to know how often some type of issue simply keeps us house bound.
I started this summer as I do every summer, full of hopeful anticipation that it would bring health, and rest, and time to read, and do lots of nothing. And, like most of the summers before, that is not at all how it turned out.
I could insert a photo of my unread books, or closets that never got cleaned out, or the files that never got shredded. I could flash you a shot of my EZ Pass statement, for the countless trips to the doctor… you get the idea.
As we journey through this world of rare disease, and chronic illness together, I use this blog to keep my perspective straight. Yet, some days it’s hard not to feel like the plate is just a little too full. And somehow, some way…
This summer Cowden’s Syndrome took a run at us- hard. The knee has been, and continues to be a work in progress. The isolation it causes is hard to describe. The sinus infection caused chaos because the medications wrecked a sensitive stomach. The knee medicines added fuel to the fire. Renegade hormones took their toll too. We are still deep in this journey to figure out PTSD and its manifestations, and ramifications, and where we all fit in. Cowden’s Syndrome has done some damage.
Yet, despite all the things we want to delete from the summer, there were some beautiful, simple, and just fun times. There were friends that visited. There were connections with dear old friends, and some new ones too. There was a fun birthday party – something we have not had in YEARS! And, there was Disney… still magical.
With all this on my mind as I went through the vacation pictures, I opted to save some that in previous years I might have deleted.
It was late one night and Meghan wanted to go back to the Magic Kingdom. I took her back myself. We made our way up main street and headed to “Dumbo” the first ride she ever rode in Disney – 10 years ago. We waited on line, and rode our elephant side by side.
I’ve never been so pleased to take a “selfie” in my life.
Then we used a Fast Pass for the Seven Dwarfs Mine Train. Three years ago I didn’t even ride roller coasters. Now, I’m so used to the ones in Disney I don’t give them a second thought. As we headed over the first hill the sky lit up with the fireworks display over the castle. We were in awe. I think it will probably be one of my most magical Disney memories ever. This picture, although not flattering, captures that moment so well.
There were many moments this summer I wanted to “delete.” But, then there were others.
So in an effort to give you a little more “real” and a little less “facebook fancy” I decided to keep these. And, I even decided I like them.
Because life is not pretty. Sometimes its downright nasty and ugly. Most of life is not us in our best clothes, and hair. Most of life is sweats and sneakers… that are hopefully clean and matching. And if we delete all of that, and spend all of our time looking for the perfect, well, I think we’ll miss some magical moments.
Cowden’s Syndrome is not going away. Plans are going to get messed up and changed at inconvenient times. There are going to be lots of housebound days full of isolation and loneliness.
But, as I go through my camera roll, I am going to concentrate on deleting less. I am not going to judge a picture by a random perfection scale. I’m going to judge it by the magic within.
And with this girl, I will learn every single day. I am just so lucky to be her mom, and I won’t delete any of it simply because it’s hard.
We remain forever
“…There is no mountain you can’t face
There is no giant you can’t take
All of your tears were not a waste
You’re one step away…” Danny Gokey
We listen to a good deal of Contemporary Christian music. There are other tastes among us, but often, especially in the car – we listen to this. It’s been a few years since we’ve had a church where we all felt comfortable and at home, although we possess strong, deeply rooted faith. This music helps keep us focused when things can otherwise seem blurry.
This particular song surfaced a few weeks ago. Meghan was battling to make a comeback from knee surgery 7, and seven was NOT a lucky number.
When you’ve been through the operating room 18 times and it’s still a week before your 14th birthday – you can call yourself somewhat of a professional at recovery.
We left the hospital with our list of directions. We went to the surgical follow-up. We scheduled PT. We even held an extra week before restarting swim. There were crutches for a very long time – used responsibly. So, when she had done everything right, and her body decided to push back – hard, she was understandably angry and very frustrated.
No one really had a solid explanation for the fluid that overtook that knee almost 5 weeks post operatively. But, there never really is a solid explanation. I’d like to say we’re used to it. But, I don’t like to lie.
There were more crutches, and more PT with the BEST PT in the whole wide world. (We LOVE Dr. Jill – because she works on the WHOLE kid. She gets that they are more than the body part giving them trouble. I know of NONE quite like her.) There was increase in strength and range of motion. There was a return to (half) swim practices.
There has been diligent icing after swim. There has been stretching and strengthening because, quite frankly, she WANTS to feel better.
We joked around during the month of June, how nice it would be if we could make July a “doctor- free” month. We longingly imagine the same scenario every year. What if summer could be time to relax? What if we could take day trips? What if we could come and go, and rejuvenate?
I just counted 20 medical appointments between us over the last 31 days. There are 2 more tomorrow.
Chronic illness is a real drag at any age. When it happens to a child or a teen it makes everything that is already hard about growing up – even more of a challenge.
When you are in an almost constant state of recovery, you can find yourself tired. Fighting so hard just to get back to where you were can make you feel like a hamster stuck in a wheel.
Chronic illness, constant pain, surgical recovery, ongoing surveillance, and all the other “fun” things that accompany Cowden’s Syndrome – or any other “it’s sticking around FOREVER” illness can leave you wiped out.
It’s hard to build relationships, friendships, or even a social group when you aren’t able to do so many of the things people take for granted every day. There are days you quite simply run out of “spoons.”
But, in life there are more times than not that we have choices. I try to model for my daughter, but so often she models for me. You can choose to sit alone. You can choose to let pain, fear, anxiety and frustration take hold. You can choose to be sad. You can choose to be mad. Or you can realize that life is hard. Everyone’s life is hard. Life is also full of blessings.
When you realize that this is your life, and you decide you’re going to make the best of it- that’s when you dig in. You climb up that mountain, one step at a time…
I admire many things about my daughter. She is not perfect – neither am I. But in her soul, there is a “Never Give Up” attitude that permeates all things. There is a constant quest for equity and justice, not just for her, but for all she interfaces with. There is a compassionate need to help others. There is a desire to be successful in spite of her circumstances – not because of them.
She always says she loves to swim because regardless – she has to meet the same time standards as everyone else. Somehow it makes each comeback a little sweeter.
No one else would likely know, or realize, or remember. But, we know.
First year on the high school team. The season starts right after school. She’ll be ready.
That’s why we will always remain
“…There is no mountain you can’t face
There is no giant you can’t take
All of your tears were not a waste
You’re one step away…” Danny Gokey
This video is worth your time…