Difficult To Work With

Published on June 29, 2019June 29, 2019 by beatingcowdens4 Comments

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.”

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.

Through God’s Grace alone we remain…

#beatingcowdens

No Excuses. No Apologies.

Published on September 30, 2018October 1, 2018 by beatingcowdens2 Comments

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 7^th 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

#beatingcowdens

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 jfrg.pten@gmail.com

Double Edged Sword

Published on August 24, 2018August 24, 2018 by beatingcowdens2 Comments

I remember as a young girl, and even a teenager, having the phone pretty much attached to my ear all the time. I remember being so excited when we got a cord long enough for me to bring the phone into my room. I remember calling people, and being so frustrated at busy signals. I don’t remember much of what I talked about for all those hours, but I liked it.

When I went to college, I went with an electronic typewriter with a 4 line display. It was state of the art. In my dorm there were computers in the common area and people were just beginning to really Email. There were no cell phones. We knocked on each other’s doors and spread word through friends when we were getting together.

It’s now been 23 years since I graduated from college. I’m coming to understand the generations before me. Perhaps some of the discontent with things changing was a foreboding sense of where it was leading.

I don’t go far without a cell phone in hand. I “google” like it is my full-time job. I’d rather text than call, and I am guilty of putting only the “perfect” images on my social media accounts. I “keep in touch” through photos of friends children. Some of these children are teenagers now. Many of them I have never even met.

I wish “Happy Birthday” on Facebook after it reminds me, and rarely send a card. I delude myself into feeling “in touch” when really we’ve lost all track of each other.

I’m watching a generation grow that thinks its acceptable to post all kinds of photos of themselves, inevitably trying to look older than they are, in a forum where nothing is truly private at all.

I’m not saying we had it all correct by any means. I was guilty as the next of trying to impress “popular” kids, or to fit in. There were mean kids. There were those who isolated. We passed notes. But, we didn’t post our comings and goings for the world to see. I was blissfully unaware of who went where, unless I was there. If we took photos it was the real deal. There were no filters.

The internet, and the social media craze that has followed is the proverbial “double-edged sword”.

Living with, and having a child with, a rare genetic disorder means I have to do most of our research here. Most doctors lack the time, the knowledge, or the desire, to entertain my instincts. I may not be a doctor, but I am an expert on Meghan. I have been able to learn through trusted medical journals and intelligent internet connections, more than I would have ever been able to learn 25 or 30 years ago.

Meghan has had medical problems since day 1, and I have had the privilege of advocating for her since then. I have “met” parents through online support groups, and have soaked up their advice like a dry sponge. Parents go out of their way to help other parents, and it is a community like no other. Without the internet I would have been traveling this journey largely alone.

There were multiple diagnoses before the PTEN Hamartoma Tumor Syndrome (Cowden’s Syndrome) diagnosis in 2011. And, truth be told, I suspect there are still a few more coming our way. During each step of the journey I have been able to connect with medical professionals and parents in ways that leave me forever grateful.

I am skilled at dealing with the insurance companies, the mail order pharmacy, and the collection agencies. I am on-line so often, printing medical explanations of benefits, or fighting for treatment courses that I know are necessary.

I have become well versed in the laws surrounding Individualized Education Plans, (IEPs) and have secured necessary accommodations for an honor student battling PTSD largely from the fallout of a rare genetic disorder.

We fund raise for the PTEN Foundation, in hopes of one day soon allowing a patient powered registry that can lead us to treatment, and maybe even a cure.

All of this is possible through social media and the internet.

These are the same forums that allow people to think they are “in touch” without ever hearing each other speak. These are the same forums that allow teens and adults alike to think it is ok to be insufferable or mean because they don’t have to look the other person in the eye while they do it. It is these same forums that claim to bring us all together, that are causing what I fear is irreparable social damage. A generation of children who aspire to impossible ideals and feel they are not good enough, are growing up. They have the world at their fingertips. Will they have the skills to access it through human interaction?

I don’t know what it is like to live anyone else’s life. Maybe there are similarities, or maybe my views are odd. I blog to give an honest account of life in this house, with these challenges, because I too have found comfort in knowing I am not alone. At least theoretically.

I am always busy. Sometimes I don’t choose it, and sometimes I choose it without realizing it. I am so used to being in motion, not having a full agenda is confusing. It is also very very rare. My only speeds are “go” and “off”.

Chronic illness can easily run your life. When every ounce of strength must be used to create the illusion of normalcy, there is not much time to be “normal”. When you can not predict the health crises that exist daily, or the new ones that crop up at a moment’s notice, it is hard to make plans to do much.

We are a family of 3. My child is an only child. She has all the benefits, and all the downfalls of that status. We have extended family. I have friends. Long time friends. Old friends. I know I could rely on them if it became time to wave the white flag. But they are busy too. And our time will come in a few short years when our children are off on their own.

My child does not have a built-in network. My child has PTSD, and incredible anxiety. She can sometimes have an abrasive personality. But, she has more integrity and compassion in her than just about any other human I know. You can’t pick any of that up off her Instagram. Or her SnapChat. To really know her you’d have to talk to her. The old-fashioned way.

That very network that has allowed me to learn so much, to do so much, and to help so much, has also caused harm. For both of us.

For me, it represents the easy way out. Aside from a few support groups, I know people will tire quickly of hearing the same story over and over. So, it is easy to click “like,” post a few comments, and have at least a visual in my head of what’s going on. But, it also leaves me with feelings of inadequacy. Why can’t I get us to the beach? Why can’t I plan day trips with actual humans without fear of having to cancel?

For her, it is a constant reminder of a “normal” life that she doesn’t have. Whether it’s pain, medical appointments, food allergies, or anxiety, there is an isolation inherent in this world of chronic illness.

She speaks of the “Sword of Damocles” with regularity. The history channel gives this explanation History Channel- Sword of Damocles (Go ahead, and click the link. It’s a worthwhile read.) This analogy explains a life hard to comprehend, and impossible to describe.

The internet probably saved us. Social media brought me to some of the smartest parents, living variations of our life.

Social media altered the scope of human relations with consequences we will see for generations.

The irony of it all perhaps is that this message reaches you through the double-edged sword of the internet.

I’m interested in hearing your comments.

We remain

#beatingcowdens

With all it’s “side effects”

One day at a time…

Thinking outside the box

Published on March 22, 2013 by beatingcowdens4 Comments

And so began the week that was.

A “simple” annual review – not so much. But that’s OK. Mamma Bear remained calm. I am most strategic that way.

I am however exhausted, and facing another battle.

It was a bit of a struggle to keep the chin up this week, as I often felt like her:

But, I didn’t act like her. Not even once. (Well once I cried – but I got yanked past it.) And that’s about all of that story I can share here, for now.

But these last few ~~weeks~~ months, have left me with a lot of questions.

See, there is this constant battle to do what is right, or what I perceive to be right, as I advocate for Meghan, and for my family. But inevitably, because I am so introspective – I am left with a ton of questions at every fork in the road.

Last week when we took her to 4 doctors and an ER about her shoulder, I ended up being told I went to the wrong ER – that we didn’t belong there. But it is a cancer center, she is already a thyroid patient there, and my child grows things. While we are blessed that none have been cancer yet – I am not of the “wait and see mentality.” But, still I paused and wondered if I had done something wrong.

In the end, the rheumatologist gave her a muscle relaxant. We began rehabilitative PT and I am seeing progress. The shoulder and neck remain wickedly sensitive – but she has back almost full range of motion.

Still we watch the lump behind her shoulder blade, in hopes it continues to decrease in size and doesn’t turn out to be the “soft tissue tumor” we were advised to look out for.

Really – no one has even a bit of a clue. And it is often just downright exhausting.

Physical Therapy this week was refreshing. At least I deal with professionals who have made themselves aware of Meghan’s needs and focus with a goal of eliminating, or severely managing, her pain. Thank God we found them.

Because of them, Meghan will swim in her meet tomorrow. No freestyle – it hurts the neck. But that was OK with her.

Backstroke seems by far to be her favorite. I love watching her swim. She seems so at peace.

It gives me a time to break from all the questions. The wondering. The worry.

It is easy to doubt yourself sometimes when so many things are changing at once. Whether you are precipitating the change, or reacting to it out of necessity, when there is so much at once I think it is normal to wonder.

We are not super difficult to get along with. Yet we go through doctors like a toddler goes through shoes. We have very few close friends – confidants to be trusted. Those who will be honest and open minded. We spend a lot of time alone. We get along really well – thank goodness.

I think what we look for is doctors, friends, associates, people who can practice:

I just wish there were more. No one really fits in a box. And that’s not just us, and our “rare disease.” Everyone is unique, and special. Everyone needs to be looked at with a fresh pair of eyes. Everyone needs to be viewed through the perspective of the other person. Only when we start to look at things through someone else’s point of view do we solve anything.

It is the outside the box thinkers that solve IEP problems, medical problems, friendship concerns, desires to make the world better…

Daring to think outside the box is risky. It is hard. It is necessary.

Especially in this season of “test prep” where I have seen this scenario one too many times…

Mine, yours, all of them – they are individuals. They have specific needs. We should never be discouraged when advocating for them and their needs.

In many cases – we are their only voice. We MUST think outside the box for them.

Mamma Bear

Published on March 17, 2013March 17, 2013 by beatingcowdensLeave a comment

Tomorrow is Meghan’s annual review for her IEP meeting.

It should have been an easy meeting. Continuation of PT and the paraprofessional until her triennial next year.

The Cowden’s Syndrome clearly warrants PT. We already have 2 sessions a week outside, and THEY want her to receive additional services inside the school.

She hurts, (by her own words)

https://beatingcowdens.com/2013/03/03/moving-backwards/ (This is a link to a speech she gave in school)

all the time. Some days she is just able to make the best of it.

Last week we lost 2 days of school (and work.) We saw 5 doctors, including an ER in those 2 days because of severe pain and virtual immobility in the left shoulder. No obvious trauma. Just the life of a 9 year old with Cowden’s Syndrome.

Cowden’s Syndrome can often be accompanied by hypermobile joints, making injury during daily activities much easier.

Cowden’s Syndrome is also a condition of over exaggeration by every body part. The smallest injury warrants a full, and sometimes incapacitating inflammatory reaction.

We manage a lot of things with Celebrex. But it is not a miracle drug.

We can not keep her in a bubble. She is 9 and wants to run and play.

But, that doesn’t mean her PT needs “don’t affect school function.” They do affect it – in so many ways.

So that is my job tomorrow. To get my point across. To speak for my girl.

Mamma bear is almost ready…

To protect baby bear… She WILL get what she NEEDS!

#beatingcowdens

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.

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 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.

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.

#beatingcowdens

#beatingcowdens

Meghan had 2 D&C procedures during 7^th 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.