Round and Round With Ridiculousness – Health Insurance Companies

August 3 2017:

“Those people at the insurance company are a fool’s behind.” -Lillian Darnell (I have no idea what a fool’s behind is, but in this case I’m guessing it’s not a good thing.)

Lillian’s craniosacral therapist left a message today that we need to cancel Lillian’s Monday appointment as Anthem Blue Cross has decided they will not pay for more sessions.

She’s ONLY been going for about 2 years now and looks forward to each monthly session for the relief it provides. It’s for pain management and they have been paying all this time (with disabled medicaid as back up).

Her amazing therapist only called as a courtesy so that we don’t incur a bill and to give her office time to dispute with Anthem. So grateful for her and the staff at the Northern Nevada Medical office.

As a side note, I had a lengthy conversation with a chromosome 18 dad at the conference who works for Blue Cross Blue Shield. I did not know there is a difference between Anthem and the Blue Cross for which he works. Anthem is for profit and Blue Cross Blue Shield is non-profit.

He wanted to help me so badly with an issue I gave up on with Anthem. Due to a mistake they overcharged me by $50 about 2 years ago. I tried for about a year to get the money back and eventually gave up. I have no patience in talking with the people who answer the phone.

They also have a flaw in their online system as I cannot register Lillian for an online account to pay her bill or find out which dentists take her insurance. One must be 18 years of age. Well, she’s not, but she has her own policy in her own name (grandfathered in since she already had the policy). No one seems to care about this glitch.

I am so thankful that we hardly ever go to the doctor and my heart aches for my C18 friends who go round and round on a consistent basis with insurance companies. Life is too fleeting and we should not have to worry and fuss with this … Sending so much love to all who have to go round and round for ridiculousness … xoxoxoxo

**Update** August 26, 2017:

Lillian’s craniosacral therapist had a peer review with someone from Anthem. It happened so fast I didn’t have time to get supportive documentation to her. She went round and round with them and they would only give her one more appointment with us. They said that Lillian is not getting better so these visits aren’t doing her any good ….

Next step is checking with the Research Center to see if there have been any research studies done regarding chronic pain and 18p- … Round and Round …

How Camilla Feels About It

**THROWBACK POST**

February 28 2013:

One of our sweet Chromosome 18 friends is doing a research project on Chromosome 18 affected individuals and their family for school and asked us to participate. Here’s my contribution … being interviewed regarding how it feels to be a parent to Lillian (who has 18p-)! Go Courtney MacMasters Go! Courtney is sibling to one of our C18 affected friends!

One Way I Listen to Life’s Messages

**THROWBACK POST**

February 10 2016:

The way events line up is so interesting. Yesterday morning I had coffee with Jules Holland and we were talking about living an unfiltered life and experiencing the rawness of life. Later in the day, I wrote an article to be submitted to an online website. An article influenced by our conversation.

I wrote it in the format of a letter …. A letter addressed to a meltdown. Dear Meltdown … Later last night Lillian had a huge meltdown. In the midst of it, I remembered what I had just written and remained calm. Had I not had coffee with Jules, talked about what we talked about, wrote the article when I wrote it, I may have handled the meltdown completely differently …. and not so calmly!! Love, love, love … xoxo

C18 Trip July 2016 #35

 

Can You Get Your Bathwater Ready

January 19 2017:

It’s one of those “Lillian miracle” posts again ….

Lillian and Camilla October 2016 Date Day 10.18.16 #8

Last night Lillian ran her own bathwater, turning the faucet on and off by herself (BIG deal!), readied the bathroom, pulling the heater out and plugging it in, and had a bath without calling me in to help with anything (BIG deal!!).

She did send a text in the beginning saying she couldn’t get the water to turn on …. yet, she figured it out before I even responded! At FIFTEEN years old! Hallelujah!! I was only needed for ONE task … getting her hair up. One day I will post that she is able to take care of that hair of hers!

When you take your shower or bath today, perhaps you may want to release all other thoughts and focus on the miracle happening in that moment. xoxo

Egyptian Eye and Rainbow of Emotions – Abstract Art by Lillian

November 27 2016:

Unique abstract art by Lillian …. Collage of her at the kids business fair last month. The “Egyptian Eye” and “Rainbow of Emotions” are her two amazing pieces.

A print of Rainbow of Emotions is on its way to Victoria Australia soon and a print of Egyptian Eye is on its way to Sparks, Nevada! Go Lillian! Please visit here if you’d like a print of your own!

egyptian-eye-4-29-15kids-business-fair-10-8-16-1 kids-business-fair-10-8-16-3rainbow-of-emotions-by-lillian-abstract-art-2015

Lillian’s Accomplishments and Goosebumps

Lillian & Camilla May 2016 Date Day #6

July 20 2016:

We shared with Lillian’s physical therapist on Wednesday, the 20th, the pictures of her using the stairs and also about one other achievement she met while on this trip. Jillian, her therapist, got goose bumps! This is good stuff!

YES!! There’s another one that was accomplished. It’s a personal and private achievement … Just know, she did it! Took 14 and a half years, yet she did it!!! Wahooooo!! We are happy to share with any other C18 parents (or other special needs parents) … Just comment here or message me. YAY, WAHOO, and Let’s celebrate!! xoxo

I double checked with Lillian’s PT for the accurate names of what she’s been working on with Lillian for the past year … Straight from her: We have been working on integrating Fear Paralysis Reflex, Moro Reflex, Galant Reflex and Tonic Labyrinthine Reflex and Body Mapping. … xoxo

The 2016 Chromosome 18 Conference: Riverfront Walk With Lillian

(This is part five of The 2016 C18 Conference Journey. Go here for part one.)

July 13 2016:

Wonderful, warm, and beautiful walk with Lillian yesterday. Blessed that she, too, loves our time in nature. Looking, listening, and discovering. xoxo

The 2016 Chromosome 18 Journey Begins

July 6 2016:

Rosey got a bath today to get ready for our trip!! Going through the car wash is so fun!

If it feels right we would appreciate love, good juju, prayers for our car, Rosey, and our journey. Rosey is 15 years old and we need her to take care of us and get us there and back safely and smoothly. Oceans of gratitude!! xoxo

Rosey Getting Car Wash July 6 2016

July 8 2016:

Whew!!! We made it somewhere!!! Team TLC is in Surprise, Arizona! We left Reno at 7:00 this morning and at 9:00 tonight we came upon Surprise. We said, “yes, we’ll take it!”

Sorry for our silence. I do not pay for data so we are not online again until we have wifi. Onward to Texas tomorrow. Does anyone know a good stopping overnight point between Tucson and San Antonio via I-10?

July 8 2016:

Surprise, Arizona to El Paso, Texas … We made it to Texas! We’ll be in San Antonio tomorrow late afternoon. Amazing rock formations in Arizona and New Mexico. We will come back when it’s not so hot!!

Lillian and I don’t do well in this high heat! Rosey was even getting too hot! This is a ton of responsibilities for one adult and I am learning so much! Yet, I have so much fun traveling with them. They are such wonderful teachers of living in the moment. My heart swells to overflowing with love …. xoxo

I am writing like the wind before I get this tired mind and body into bed and be ready for one more day of driving tomorrow. I am compelled. I have just got to document some of what we are experiencing and talking about.

Thomas had such amazing thoughts to share yesterday and Lillian also yesterday morning before she got a tummy ache. Although we are having a ball and laughing tons and enjoying this beautiful land as we drive by it; this has not all been fun and easy, and it was my goal to have this trip be a learning experience for me of not knowing, not planning, and just going. That’s certainly not for everyone.

Yet, I felt this was important for me. It’s a huge step out of my comfort zone. One step closer to trusting myself, trusting internal messages, and letting go of how it’s supposed to be done. I’ve never driven this far alone … Much less alone with Thomas and Lillian. Plus driving this far in a 15 year old car. Skating through this trip on less than a shoe string budget and letting go of worry that the string will hold tight …

I’m having moments when I’m so tired I’m shaking and wondering what in the hell I’m doing ….. Yet, I know. I may not know on the surface right now; but deep down, I know why I do what I do. And then we share these amazing moments together with wonderful comments from Thomas and Lillian and moments full of so much love that further each one of us. Moments where I’m so hot and exhausted, I have visions of taking an ice bath! Definitely some amazing growth for all of us happening! WOW! xoxoxo

July 9 2016:

El Paso to San Antonio! We made it about 5:30 this afternoon! Been a whirlwind since.

There is so much unexpected loving-kindness flowing my and our way … WOW!!

I just drove Team TLC 1700 miles … I did it! Now. Where’s my bed?

 (Go here for part two of the 2016 Chromosome 18 Conference Journey.)

Can I Have A Multi-Pass

June 2012:

Most of you know that Lillian has a speech impairment … My day is filled with constantly telling her I don’t know what she’s saying ….

Sometimes I choose to make us both laugh and repeat back what I heard her say …. Tonight what I heard … “Can I have a multi-pass?” What she actually said, “Time has gone fast.” We both got a good ole laugh outta that one!! Told her I was out of multi-passes!! ♥ ♥ ♥

Blessings,

Team TLC
See It. Share It. BE IT … Spread Love Everywhere You Go!

Did you know Camilla wrote a book? It’s titled “D iz for Different – One Woman’s Journey to Acceptance” and you can read more about it here.

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