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.
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