Blog · June 8, 2014

Desperately Seeking Zen

I must admit, this past week it was hard to try to be my usual ‘Zen’ I try so hard to be.

Nicky’s g-tube supplies failed to show up a few days before we usually run out, and with 3 days of ‘food’ left, I called, only to find out that, for the umpteenth time, the company that supplies us with these vital products changed. It’s never, ever a good thing. Actually this time, the company didn’t technically ‘changed’, they merged with another one, and they claimed they Faxed the referral to the Medical Group/Insurance on May 21st and they were still ‘waiting’ for a response. They also stated that they do not send anything automatically, and that from now on I have to ‘call’.

Oh no. Not this again. I honestly hate to ‘call’. I never know ‘when’ to call. I can’t call too soon, they have rules I have to follow, they usually tell me I can only call a week before I run out, but if they have to get new referrals and I call only a week before I run out it’s “too late”, it’s a nightmare.  My heart sank. I KNOW how I get when things go crazy and I feel everything is out of my control. I have a tendency to ‘blow up’. It took everything in me to hold it down… keep calm, cool and collected. In the past I used to let them have it, but that, I found out later, would only result in my day being ruined, not being able to sleep at night and be mean to my family. It wasn’t worth it for anyone concerned.


Nicky and Connor Playing in the sprinklers

Instead, I sighed at the lady. “You know” I told her, “I’ve been dealing with this, every single month for the past 14 years. I am so tired of playing this game, this game with my son’s life that needs to be toyed with every new supplier with all their new regulations”. To myself I thought… “In the business of caring… wasn’t that a slogan insurance companies had at one time? HA!” Internally I further thought to myself: “If anyone else tells me we have the ‘best’ healthcare in the world I am going to kick all their teeth out’. But I kept calm somehow and I told her:”These are not optional things. I can’t just ‘wait a week’ or ‘whenever you guys get around to it’. These are ‘life or death’ supplies. Why are you or the insurance feel these items are optional and not a necessity?”. All she could muster to reply to me was ‘sorry’, not very convincing either, and she further told me she could do nothing for me. I hung up on her. It’s not worth my sanity. I went outside and played with my boys while they had fun in the sprinklers. I took the BS completely off my mind. Not an easy thing, mind you, but I didn’t want my day to be ruined. I chose to let it go.

On Friday morning I called again. ‘Still no approval’ she stated. I wasn’t going to get off the phone this time so easily. “You have to tell me what to do, this is unacceptable”. She connected me to the medical group, who they claim was at fault for failing to approve (or deny) and I left an urgent message on the voicemail of my son’s Doctor. In no uncertain terms I told her that I didn’t need someone to call me back tomorrow, this was priority, ASAP stuff. I’ve learned a long time ago that if I don’t put ‘Emergency’ on my voice, nobody is even going to call me back. A few hours later she called me, told me that they never received any FAX or phone calls from the new supplier, but that she put Brenda on the case (my contact at the Medical Group in charge of the referrals) and that she (Brenda) will make sure it will be all taken care of, because anything that comes through for Nicky she always gives it priority.

Well, that’s nice to know. It put a smile on my face. This gal, Brenda and I, go way back. I’ve had many screaming matches with her over the phone, mostly because I felt she was not doing her job. It wouldn’t be unusual for her to tell me that *I* had to to make all these calls to expedite things. After making phone call after phone call one day years ago and finding out nobody had ever received any FAXES or calls or anything and that my call was the first anyone had ever heard of the problem I blew up. THESE PEOPLE ARE PLAYING WITH MY SON’S LIFE!!

Here’s my question of the day… Why in 2014 are we still using FAX MACHINES???????

inner-peaceSo, long story short… in the past, this would have ruined my entire weekend. I remember leaving horrible, tearful messages with the my ‘case-worker’ at Aetna a decade ago, begging her to approve Nicky’s bandages and she would never even called me back. Ever. I would call her every day and I am shocked I never had a heart attack or a stroke now thinking about it.
I will not likely get any new supplies until sometime next week (surely they will take their sweet time while we’re completely out), so I went to the store to get some ‘boost’ (not exactly as good as Nutren 2.0 but nobody around here sells Nutren 2.0) and thankfully a few months ago I was able to get a hold of several hundreds kangaroo bags that a mom who no longer needed them sent to me for the price of her shipping them to me.

I’ve talked about this issue before on a previous blog, but I always find it so insulting how the g-tube supplies have to be re-approved every month.As if Nicky all of a sudden would be able to eat normal? With EB, and especially RDEB, there is no going back. The condition does not improve with age. It’s considered a degenerative condition, which means it gets worse with age. Yet somehow, every month the insurance has to make sure Nicky still has EB and he still needs it. It’s so insulting and ignorant it’s hard to digest. After 14 years of Nicky having his g-tube you would think I would have gotten used to it, but all I learned is to keep my Zen, to DESPERATELY keep my peace to me, to breathe. Breathe, Silvia, Breathe.

In the next couple of days I want to write a much happier blog… I promise this will be a good one. Today though, I don’t feel like talking happy. Nicky’s EB friend Ian, who had just turned 16 last month died yesterday and I am still in a state of shock. I don’t think I will ever get used to hear of yet another child with the same diagnose as my son passes away, wether that is at 6 months or 35 years. These patients suffer immensely all their life, and their life is never what we think life is or ought to be. They can never run or swim or do normal things without an immense degree of pain. It’s just incomprehensible to me how this horrid disorder exists and it completely changes our view of life in ways we never knew we needed to know nor learn.

My thoughts are with Ian’s mom Delicia and her family. I will be lighting a candle for her tonight.

Love and Light,