Just Do Your Job

Published on March 25, 2018March 25, 2018 by beatingcowdensLeave a comment

I guess as I think about the last few weeks, so often the thought comes to mind that if people would just do their job, thoroughly and with accuracy and pride, many problems could be avoided.

This weekend I compiled a 5 page letter, and a 20 page PDF and Emailed it to the CEO and director of operations of the local hospital that I feel could have done a far better job handling my February 21 vascular surgery. It took a little time to get it out, and it was frustrating, but simultaneously cathartic.

Early in the healing process my sage daughter said, “Mom, you’d never let anyone treat my body like that. Why is it OK to treat yours that way?”

It isn’t my dear. And I know she’s always watching.

I took my notes all through the week before and after the surgery, and then I rested to see if I could get it out of my system. It lingered. So, yesterday, off it went. I told them I’d like the name of who they handed my case off to, by the close of business on Friday 3/30. There’s a post it on my desk. To be continued.

Just Do Your Job.

When I finished that letter, I wrote one to my health insurance carrier. We are fortunate enough to have two, but keeping things straight can get confusing.

Meghan met a new neurologist in December of 2017. When we went to the appointment there was no one to collect a co-pay. I figured they would bill it. Then, I forgot. The news of the finding of a “lesion” was enough to jar me out of my normal routine.

Sometime in January I received an “Explanation of Benefits” and a $35 check from my insurance carrier. This is not uncommon, as often I have co-pays refunded once an office receives the co-insurance payment.

A February MRI and neuro follow-up gave news of in fact TWO 1cm lesions, and some swelling. All of which will need to be watched. I got a bit distracted.

The check sat, with several other checks until March 8th, when I deposited them into an ATM. That was a Thursday. On March 11, I logged onto my online banking to see that the check had a “Stop Payment” and in addition to having the $35 deducted, I was charged a $12 fee.

Furious was an understatement, as I am meticulous about my banking.

Just Do Your Job.

On Monday the 12th I received a letter from Chase Bank explaining their end of the explanation of my fees. My insurance carrier told me that the doctor contacted them on February 15 to ask them to stop payment on the $35 as I had never paid the co-pay.

The doctor never billed me, just reached right to the insurance company. They later admitted never billing me. No apology. The insurance company never reached out to me. Never told me the check had been stopped. I didn’t go to the bank with the check until 3 weeks later.

Within 72 hours my bank had notified me online and by mail. My insurance company had no explanation as to why they never afforded me the same courtesy. My bank actually DID their job.

When I took it to a supervisor over the $12 fee, and my embarrassment, and my annoyance at the number of hours this was taking from my life, she offered me the standard PO Box to send my complaint.

I asked her to do better and she told me to fax the receipt of deduction to her. She said she’d expedite it. It’s been 10 business days. The formal complaint letter is written and mailed.

Just Do Your Job.

Then, there is the doctor who refuses to figure out mail order. My insurance has denied payment of the drug until it goes to mail order. Thank goodness it’s affordable. I’m paying it while simultaneously working out getting him to mail order it.

Just Do Your Job.

Tomorrow, I will make a few calls on our newest denial. I suspect it will take a few weeks to sort out, but I will win this appeal. Because, no one in an office is going to tell my that my daughter has “recovered,… and no further improvement …. is expected.” Nope. Not working for me.

Apparently they weren’t at the swim meet last weekend. The meet that her PTSD might have kept her from without a hard push, but the meet where she DESTROYED all her best times. At that meet I had proof that further improvement IS EXPECTED. Because it is happening.

Just Do Your Job.

That swim meet last weekend was 6 hard months in the making. There has been so much work in place dealing with her PTSD, her anxiety and her panic attacks. She had to make sacrifices and step away from her commitment to a local theater program. I didn’t give her much choice, even though I knew I was probably taking one opportunity at theater from her to give her another at swimming. Parenting is about making tough choices. She’ll be at all the rest of the theater practices. She had to KNOW she could get through this meet.

This event is just exhausting. She has a love/hate battle with it. Sometimes she even catches the “2Fly Flu”

The improvement from entry to finals just shows how much she needed to be there and get this out of her system. She’s got more progress in her.

It’s been a goal to go under a minute for over a year. She crushed it.

When you are 24/7/365 fighting a chronic illness, and in this case a rare disease, no value can be placed on physical strength, actual and perceived. You see there is never a moment when you are not waiting for the other shoe to drop, right on your head. So the need to be physically strong, is a NEED, not a luxury.

I sit here now, Sunday evening again, and I think of all the things I would have liked to do this weekend. I think longingly about how nice it would be, to be in Alabama at the PHTS Patient Symposium, and if not that, then to get a manicure, to catch up with old friends, or even to stop and read a book. But, I know that is not meant to be. Not right now.

For now, at this point my life, weekends are about putting out the fires that creep into the world all week. It is about uncovering the “in box” and fighting the fights that will get my daughter and myself the care we need and deserve.

I like to think it won’t always be this hard. But, if I’m honest I suspect it will be.

The trick is going to come in my figuring out how to keep it from swallowing me up. There is always going to be a fire, a battle, an appointment, or a medical drama. ALWAYS.

This weekend, I had dinner with my husband. I took a walk, AND I went to one store for fun. It’s not much, but it’s a start. It’s a process.

The battles rage on.

Vigilance is required. This journey is not for the faint of heart.

But we are establishing support from afar. We are finding each other.

As one of my groups says #WeAreCowdenStrong

And we, in this house, remain

#beatingcowdens

Recovery – phase 3 = HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Published on February 15, 2014February 15, 2014 by beatingcowdens5 Comments

At the end of the day… quite literally if you go by our arrival time last night… I guess all that really matters is that your little girl went through the surgery successfully and you get to arrive home, as a family to sleep in your own bed.

That’s why I refrained from saying too much in the midst of my Mamma Bear Rage last night.

Because sometimes you need to sleep, and think carefully before you type.

The surgery went smoothly. The surgeon did a fine job, and so did his team. It was not their fault we were delayed by hours. Someone else’s baby needed their attention. And I can respect that. He followed up personally, listened to Meghan, was cautious but not paranoid. His attention is to the surgical incision. The follow up care needs to be guided by endocrinology.

Meghan’s largest discomfort, aside from the sliced neck muscles, appears to come from the “durabond” glue used to hold the incision together. Things on her skin – even band-aids annoy her. This is making it feel extra tight (doing its job,) and is making breathing and eating uncomfortable.

But we traveled to the hospital with our gluten, dairy, soy free cooler, and she was progressing on pretzels and our ginger ale, mixed in with a little “Ever Roast Chicken Breast.” By the early afternoon she looked better. The surgeon said to watch her till 5. A fair number considering she didn’t hit recovery until 7 PM the night before. If she was still good at 5 PM he would clear her to go.

And then there was endocrinology. Perhaps spearheaded by the fact that Meghan’s endocrinologist is on vacation for all of January and February, or maybe just a poor information sharing structure, things fell apart at endocrinology.

When the thyroid comes out there is always the risk of surgical damage to the 4 small parathyroid glands that help regulate thyroid function. That being said, even when they aren’t damaged, they are often traumatized for a bit. Low blood calcium is OK for a few hours, but not a few days. Like everything else, the body needs all things working together for smooth operation. Originally it was explained to us, that it was not uncommon for the calcium to dip after surgery then recover. They had to just see if it tanked out. The decisions for her post op supplementation would be made based on these blood results.

So, she had blood drawn at midnight after surgery. Then there was the draw at 1 AM for blood sugar. Then there was a draw at noon. Later in the afternoon one of the doctors/residents spoke as if Meghan had received a dose of calcium (2 pills and a liquid) prior to the blood draw. I insisted that was not the case. Then we were told the blood had to be redrawn at 6 PM and would be read at 7PM so discharge orders could be accurate.

Well, at 6:45 when I hunted someone down for the blood draw, again I thought it odd that the calcium – that was supposed to be there before the noon draw, showed up 30 minutes AFTER the 6:45 draw. I waited until 8PM and started hunting down results. I was told that the ionized calcium had dropped from 4.8 to 4.3. I picked up my copy to show them the midnight draw was at 4.8 and the noon draw was at 4.3, Apparently the 6PM draw held at 4.3 There were two other tests, and I wanted the numbers.

Run around. Run around. Run around. Finally after much work and some heated conversations we got the numbers from the other 6:45 tests. The calcium held their own, indicating a drop off to be unlikely.

Originally we were told she had to stay overnight for a 1 AM and 7 AM blood draw. Then we were told that since the labs were drawn with NO supplementation. ( I brought THAT to their attention) and she still did OK, that NO blood draws were ordered for one week. NOTHING overnight.

Now it was after 10.

The day nurse, who was grossly overworked, and contrite and apologetic had missed the order for the calcium. At least I was able to respect that she apologized right to my daughter for muddying up the entire process and raising her anxiety.

The resident – 1st year who left because I was asking too many questions, and declared himself “off duty,” is the miniature version of why our medical system fails us.

The passing of the buck that took place around the endocrinology department – disgusting.

And this is the clean version.

Facilities. Doctors. People. Can rest on reputations previously earned. And then one feeds into another and that reputation carries them – sometimes too far.

We have been there, and done that. And we are far from done. So loyalty lies in individual treatment and care by individual doctors and nurses. There is no one perfect facility. There is no one perfect place. Not even in Manhattan.

We gathered our things quickly.

We were in the car at 10:45PM.

My wise daughter asked what the lesson learned.

I said,”Trust your Mom.”

My husband said, “Educate yourself. Advocate for yourself.”

I guess we are both right.

The ride home was tough. Painful. You use your neck for an awful lot of things.

But we got home in time to give her a well deserved Valentine’s Day Gift

She certainly is our Hero. And as we travel down the road to recovery again – a road she is exceptionally good at – I hope she remembers both lessons from the car ride last night. Especially the one to “Trust your Mother.” For now I can be the advocate. She has to find some time to be the kid.

Valentine's Day 2004 - our first hospital stay. — Valentine’s Day 2004 – our first hospital stay.

Valentine's Day 10 years later... — Valentine’s Day 10 years later…

One year…

Published on July 20, 2012 by beatingcowdensLeave a comment

One year…

It just sounds better than 6 months. It feels better too.

“Six months” says, we are still a bit concerned.

A year says, “You got this. I’ll just check back and make sure it’s all good.”

One year from now I will visit the plastic surgeon. She will check on my fake boobs, and make sure they are still doing exactly what they are supposed to do. (Which near as I can figure is stay still.)

Next month I visit the breast surgeon. Hoping to get “one year” from her too.

Eventually my life and Meghan’s will be in some type of maintenance cycle. We still have some time before we get there, and there will always be doctor’s appointments – but for now it’s a big win.

The cancer is long gone.

I heal pretty well. Especially on the outside.

Cowden’s Syndrome is good for something.

Falling Stitches, and other Hysterectomy Recovery Issues

Published on June 1, 2012 by beatingcowdensLeave a comment

WARNING, some of this text may be a bit graphic, and might be better reserved for those recovering from a hysterectomy!

Enough with the bleeding already. That’s it. I am done. Over it. I had my hysterectomy 2 weeks and 2 days ago. I didn’t know headed in that I was headed for 4 to 6 weeks of bleeding. I thought this was supposed to make the bleeding STOP!

I guess if I had stopped long enough to think about it, I would have realized that the removal of a few things inside of me makes it necessary to stitch up a few other things, and as they heal it’s not unusual for them to bleed.

BUT, what is with the stitches? (No not that STITCH! You know what I mean!)

Stitched up Stitch (Photo credit: amesis)

Really it is easier to heal mentally from an external surgery than an internal one. At least from the mastectomy I could watch the wounds close. I could be sure I wasn’t doing too much. I watched the bruising fade. I knew I was getting better.

Now, just when I think this bleeding is letting up, (and it’s not all THAT heavy, but just REALLY annoying) a stitch falls out of me, I begin to cramp, and on go the faucets again.

The doctor said the stitches are coming out a bit too early, but apparently they don’t care, because they are coming fast and furious. Apparently my body seems to understand me when I say that stitches belong outside, not in.

What I want to know is why every time I think all is calm, there is this surge of blood. Enough to scare the heart out of me. Then, just like that it stops.

It seems to be taunting me. Daring me to switch to the lighter pad, but I won’t do it. Not yet.

I have cramps today. The kind I would equate with sore boobs, and a craving for chocolate while I wait for my period. Except, I don’t have any boobs – at least not ones that will be sore, and I won’t be getting my period ever again.

So what is with these cramps?

I am convinced stitches belong on the outside, where you can keep an eye on them. I told them my body doesn’t like dissolvable stitches. I guess I have to sit tight and wait while it cleans them out.

At least I am a professional at healing.