Ugly Cry

Published on January 23, 2022January 23, 2022 by beatingcowdens4 Comments

I cried this weekend. Not just the tears down your face from a sad movie cry, but the gut-wrenching sobbing cry that leaves your head pounding and your eyes swollen shut. And, it wasn’t just once. It was at least three separate times, and the weekend isn’t over yet.

I wasn’t going to write about it. I mean nothing specifically terrible happened. As a matter of fact, I drove 130 miles each way to watch my girl swim this weekend, and to give a little love to my second best girl, Ella.

I could have stayed in those stands forever. It was the place I felt the most purpose, and a heart full of pride. She has swimming goals. But my mom goals for her have already been exceeded. There are kind teammates, friends who laugh together. There is a boyfriend, and a best friend, just attentive enough that I know they have her back, and Ella’s too. School is exactly as hard as it should be, and she landed comfortably on the Dean’s List, far exceeding my own first semester.

But the weekend wasn’t all there. And truth be told there are entire weeks that have to happen before the weekend.

I was in the middle of ugly cry three this afternoon when it crossed my mind it was time to write.

I started this blog almost ten years ago with the promise to myself, and to Meghan that I would, with reasonable privacy precautions in place, record a “real” story of life with Cowden Syndrome. At least, our real story. Over the last ten years, I have come to “know” too many amazing families that each deal with their own real story. I have laughed and cried and prayed over miles and continents and oceans with so many of them. There are not two of our stories that are the same. Yet, they all have value. And if ours is the story chronicled here, I deplete its value by hiding the fact that I ugly cry.

I have been repeatedly humbled by the number of people who reach out to me and thank me for telling our story. I often wonder why people even read. But I would be lying if I did not include these days. And I do not like to lie. As grandma used to say, “I haven’t the memory to be a good liar.”

The truth is this. Even ten years into this diagnosis, I get overwhelmed. It is overwhelming. Sometimes feeling like you are at the bottom of the mountain, all day every day is utterly exhausting. To constantly feel like you might be missing a scan, like you are behind on an appointment, planning a surgery, and cramming anything else into the cracks in between work and sleep can leave you burned out. I swear some days just picking up the phone to schedule something triggers PTSD. And for that, if you know, you just know. Because every office thinks they are your only office, and none of them seem to comprehend it is through your JOB that you have insurance.

Truth be told, it doesn’t all have to be Cowden things. Sometimes “regular people” things seem overly complicated and just generally hard. And when you mix together a rare, poorly understood disease and some “regular people” things, too well sometimes you just…ugly cry.

Regular readers know that I suffered a foot injury while teaching 3 years ago. And it has complicated my life in a “regular people” way, that if it was my only medical issue it could potentially be all-consuming. The return to in-person teaching this year has left my body feeling like I jumped off a steep cliff with no parachute. My body literally feels like it is in a free fall from the hours of standing upsetting my balance and causing pain up my leg, in the opposite knee, and in both hips. So, adding to the fact that the school day itself, double-masked and peeling hands from sanitizer, literally leaves me “stick a fork in me” done, I have restarted physical therapy, added a new orthopedist, been working through pain medications one at a time, and recently added acupuncture to the “keep me functional and sane” regimen.

Friday, the battle over this, most of which I will be deliberately vague about the extent of, took me to a whole new low. I am floundering. There is nothing much to say to me, so I have skillfully pulled back from most friends and family. I must press on at all costs. So I keep my head down and forge ahead. But Friday I found myself on the floor of my kitchen with two well-meaning dogs slobbering all the skin they could find while I simply lost it.

Then, I shook it off as best I could and planned and laminated new lessons like it is year one teaching, not year 25. Well, because essentially as an educator this is year one. Nothing is like it was before. Or, well, maybe it is still year zero. Either way, this whole toss it up in the air, and see where it lands system we have going here involves new plans. And new plans take time. And migraine medication.

I leave a tab open on my computer for everything I am contending with at the moment. Sometimes it freezes the system and I have to reboot. A metaphor? Probably.

One of those tabs was USPS tracking. I paid $16 to mail a letter, priority, certified, AND return receipt because I NEEDED a signature. The signature card arrived, with the number “C19” and no name. I can only hope that when I need it, someone can confirm the identity of “C19.”

Another tab is for our mail order pharmacy, my constant nemesis. One medication of Meghan’s which was canceled for no apparent reason on 12/23 took me through 4 phone calls to them and 4 to the doctor’s office before I finally emailed the doctor directly Thursday evening. This is a really cool hack Moms of chronically ill kids figure out. You eventually pick up on the email handle used at hospitals and you realize despite the use of “portals” where front-end staff screen your correspondence, most doctors get their own email. So, Friday morning he sent in a script himself. Except, it went into the wrong “pocket.” There are different areas for different types of scripts with different authorization processes. So, I regularly check all the “pockets” and there it was, in one where it was going to be denied. Again.

To make it even more interesting, when I had logged in originally I couldn’t see any of her meds. Or Felix’s. So I logged back into her own account, which she had authorized me to use, and which she had consented to merge with mine when she turned 18. When we started this on 12/23 there was plenty of medication. It is now dangerously low. I placed a call to the pharmacy. 97 minutes, and 4 representatives progressively up the food chain later, I had successfully gotten the medication transferred and expedited, but not yet processed. That will be a wait and see… And, the linking of the accounts, after being told it wasn’t possible, and essentially that I was nuts, the best I got was a “ticket” put into tech. I changed all the passwords to match so when I toggle three accounts I can move faster. When the final woman asked me to hold for a survey I said, hopefully for a recorded line, but simply because I had to get it out, “No, I can’t because I will not give me the opportunity to specify how many ways each of the 4 of you have been unable to help.”

You see I had already been on with them the day before over one of Felix’s medications which they told me was covered for 60 out of every 90 days. I still haven’t wrapped my head around a reason, other than cost. So, I found it cheap enough to buy, through Amazon Rx. Yep. That’s a thing. When Walmart called me, they wanted insurance information, because “this script is well over $1200.” When I gave her the Amazon RX code she actually gasped. $131. Should be in Tuesday. I will find the time to get to New Jersey to get it.

After the orthopedist. Because the acupuncturist said I should probably ask for an MRI of the right knee when she was treating my left foot… I was hoping the lidocaine patches would do the trick… not so much.

And the dentist is Wednesday. For a tooth I am sure I have cracked. Because grinding my teeth is just reality.

And physical therapy is Thursday. Just because.

Oh, and “you’ve got mail” just informed me FAFSA (hours of my life for no reason at all) is due again soon.

And, the driver safety course is expiring.

The notepad beside my computer reminds me to make time to call insurance to see if they can authorize Meghan’s MRI now, so I can schedule it for May at the facility adjacent to the hospital, not at all conveniently located on Long Island where the new Interventional Radiologist (who actually seems like a kind, decent human who will eventually need his own post) will have a go at the vascular malformation butting up against the nerve bundle in her thigh.

We’re overdue for dermatology. The one we had left, and I am in search, but time ticks by. I need a visit to the ENT for the fluid in my ear, the psoriasis in both ears, and the migraines that are relentless and likely sinus-based. She’s due for an abdominal sonogram and a colonoscopy. And, actually, so am I. But at least I have a GI in place for her. That’ll be early July, hopefully after she is healed from the IR procedure. There are times I wonder when she will get her first job. And other times I know that BEING her is a job most people would have quit. I can only hope her first employer understands when there is no job history.

On Sunday night I clean up my notes from a week’s worth of phone calls. I do my best to make a new list to stay on task for the week ahead. I try to keep myself honest in getting things scheduled, even when I know some will continue to balloon into bigger and seemingly insurmountable problems.

On Sunday night I also reflect. And that is where I take the time to forgive myself for the ugly cries. I ground myself in the knowledge that even though so many have it so much worse, the parallel truth is that my pain, and my being overwhelmed is equally valid. No more, no less. And I am entitled to my time to yell and scream and carry on.

On Sunday night I pick myself up, dust myself off, and remember that I am loved. And then I make sure I allow an hour of TV with two doggies and the man who loves me unconditionally, ugly cries and all.

We remain #beatingcowdens – one day at a time.

Overwhelmed

Published on December 17, 2015December 17, 2015 by beatingcowdens4 Comments

Someone tried to steal my credit card today. Online purchase of almost $1000. We are pros at this. Text alert. Call to Chase. Charge suspended. Crisis averted. We are pros at being hacked. One day I’ll figure out why. Right now I don’t have time. I’ll be busy calling E-Zpass, and all the other automatic charges on our only real credit card. Whatever. I have to laugh. Cause if I don’t I might cry. And that would cause a headache and be counter-productive.

I have serious attention issues. Probably because everything I touch seems to morph into a few more things to address. More phone calls, more emails, more papers, more appointments.

My life is not that bad. Truly. I know I’m in good company. Chaos abounds and if you don’t appreciate some of it, you’ll regret missing it. But, the thought that someone would want to BE me makes me laugh a bit. Or maybe they just think I’d be too busy to notice…

Yesterday Meghan was scheduled for a biopsy at 3:30 PM. That is a rotten time for any surgical procedure. It involves a full day of fasting, anxiety and the like. We arrived at 2:30 and got checked in. Then we waited. And at 6PM when I finally walked with her to the OR she was dizzy and light headed from nerves and a day of not eating. Hours delayed. Cause, why not?

It sucks that my 12-year-old knows what a biopsy is. It really, super sucks that she has had so many. It’s helpful that they’ve all been negative so far, but the notion that “luck” will run out at some point looms. She knows all about pathology and wonders if it will be back before Christmas. I am often struck by the notion that all of this is unfair. But, I have always hated the people, young and old, that whine about things that are “not fair.” The struggle not to become THAT person is real.

I write to bring back my focus. I write to get the thoughts swirling around in my head back into good order. I write because it makes it less awkward for the people who actually want to hear about our lives, but don’t know what to say. Some days the task of organizing these thoughts is much easier than others.

We are at a point that our lives are overwhelming. I don’t just mean busy, like in a typical, school, activities, homework, sports, etc. kind of overwhelming. I mean they are overwhelming in the medical sense. We are past the point where we can even really talk to most people about what’s going on. I get to kid around a little when I talk about needing my spleen tumors scanned again, or my implant lifted, but it’s hard to share the true tears of frustration I feel that I will have to do that with a new surgeon because mine sold her practice and is now out of network. I keep the tears I cried about that tucked away.

In fairness, what do you say when you are discussing the umpteenth medical procedure of your 12-year-old, when most adults you know have only had one or two surgeries or procedures in their lives?

How could I expect someone to even respond?

How do you explain that we have “operating room routines?”

What can you say to soothe the lonely pain of recovery. Again?

Nothing silences a conversation faster than a discussion about the uterine biopsy of your 12-year-old daughter.

Nothing silences her cell phone faster than trying to just share a little of that enormity.

Truth is, we know. We know we are loved. We know we are thought of, and virtually hugged, and prayed for. We know.

But, when so much of your life is swallowed up in medical procedures that you really can’t talk about – it gets lonely.

She’ll need another day on the couch. To recover fully. Her Dad will stay home tomorrow. They will watch some TV, and talk without speaking. They are good at it.

And Monday, she’ll head back to school, awkwardly searching for the fine line of politely ignoring the enormity of her life, and sharing just a little with those who are brave enough to ask.

Please don’t take any of this the wrong way. We appreciate the love, and texts, and Facebook messages, and Emails. We love all of you. And we are sure we’ve missed some key things in your lives too.

It’s just, well, the reality of this Cowden’s Syndrome, the enormity of the 5 surgeries in a bit over a year, the gut wrenching notion that it won’t quit – ever, the frustrating planning of two scans and a doctor’s appointment already eating up the next “vacation,” the waiting for the pathology report for the polyps that just don’t belong in the uterus of a 12-year-old, well, honestly… It’s just overwhelming.

I think that’s the word that describes my thoughts best. Overwhelmed.

Now that I’ve got that organized, I’ll get back to the business of

BEATINGCOWDENS!

Overwhelmed

Published on July 4, 2013July 4, 2013 by beatingcowdens1 Comment

Yep. Totally and completely overwhelmed.

I know I am not the only one. But I think sometimes the first step is admitting it.

Maybe it was overzealous to try to synchronize mine and Meghan’s 6 month follow-up appointments to coincide with the first 2 weeks in July and the February break.

My initial attempt scheduled 12 doctors , plus one MRI and one sonogram between June 27th and July 16th, (for both of us combined.)

It has mushroomed to include a Pituitary Stimulation Test and another ultrasound, 2 more MRIs yet to be scheduled, a possible muscle biopsy – pending a conversation between 2 specialists, a full day of work for me one day next week, Physical therapy 1-2x a week as we can fit it, 3 nights a week of swim practice, and 2 dentist appointments (that I PRAY don’t need follow-up!)

So, I waffle in between resenting the loss of my summer, and being grateful that I have July to get all this done.

The entire month of June I salivated for July. I couldn’t wait for schedule free days. Now I am frantically overtaxing my shredder as I organize all the tasks I label for “summer,” during the year. The July calendar makes me nauseous. Literally.

I mean we might have gotten bored eventually, but we have barely been near the pool. I say bring on the boredom.

Most of our appointments are in Manhattan. That can be a 45 minute trip or a 2.5 hour trip – depending on… well, the humidity? day of the week? air pressure? There is ABSOLUTELY no predicting.

We could take the bus. But that often involves the need for the subway, which I won’t do with Meghan, and lots of walking, which honestly she can’t do. So, we drive, fill the car with gas, head over a bridge and through a tunnel to a carefully pre-selected parking garage.

And, since there is no predicting, there is always a meal to pack. Never want to be caught off guard with a hungry Gluten, Dairy, Soy allergic kid.

Sometimes we are on time. Sometimes we are late. Always we wait, and wait.

Meghan is the most well-behaved child. I don’t lie because there is no need. I am sure she was a gift to me – while we can at times butt heads, her personality allows her to pack a book, her iPad, or something, and sit. For hours and hours. I couldn’t pull this off if she was any other way.

But, I don’t know if I would have a choice. There is no traveling to Manhattan at 4 pm, on a school night. It just can’t be for either of us. So we do what we must.

Today, before 8AM she was in the park, running the “fun run” of a local race that has been dedicated to our “Angel Meghan” for over 20 years. She ran for a quarter-mile – 2 and a half minutes, came in a close 2nd, and has been nursing her knees ever since.

I am in the basement, shredding, and writing while I wait for my overworked shredder to cool. Trying to get a few things off the “to do” list.

My head is constantly going – processing new information learned this week. Thinking. Asking. Wondering. Worrying.

Today is a good day. Daddy is home. The ultimate distraction for her.

We had a long talk this morning, me and my girl. I tried to push her to reach out to some friends. To go and be carefree like she should be. Even if its only for a while. Everyone has something we reminded each other.

I still can’t shake my need for order. I don’t need a psychiatrist to tell me my obsession with a clean house is tied to the inability to control much else in my life.

Cowden’s Syndrome – our curse, and our blessing. Sucking away hours that should be spent on the beach or in camp. Forcing a little love to grow up way too fast. Torn between my guilt that this mutation came from me, and my gratitude that she saved my life.

I lost my driver’s license today. Just the license. It fell out of my pocket. For $17.50 I ordered a new one on-line. Here’s to hoping that whoever tries to be me has a strong stomach, and a decent amount of stamina. They don’t know what they are up against.