Author Archives: Camilla

TLC Custom Portrait – Gift from a Friend

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**THROWBACK POST**

June 4 2022

I must show off this custom portrait of Team TLC, made and gifted to me by my friend Jessica.

Jessica and I met through a facebook writer’s group about 6 years ago. She lives in The Netherlands, and we met face to face in 2017 or 2018 when she came to visit her dad in California.

It’s been inspiring to watch her grow her artistic skills and making custom family and pet portraits. I’m so happy we’ve stayed connected and we’ll get to see each other face to face again this coming December when she comes for another visit.

Oh my gosh! This made my eyes sweat. Love that Jessica captured her creation process.

 

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A post shared by Jessica Araus (@jessaraus)

Camilla Update – Pernicious Anemia and Iron Deficiency Anemia

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August 17 2022

I’ve not been posting as much as I did in the past. I’ve not been writing, not keeping up with my favorite fb groups, and haven’t even been able to go for walks since June. I have been utterly drained and exhausted for the past few years, with it getting progressively worse.

For the past year and a half I’ve been traveling a path of lab visits, MRIs, CT Scans, ultrasounds, colonoscopy, endoscopy, an EKG, visits with the GI doctor, heart doctor, and now a hematologist. I’m thinking the (hopefully) last stop will be a neurologist.

About a year and a half ago I visited the doctor with a list of symptoms, and asked her to please help me figure out what the hell is going on. I knew I did not feel like myself, with a drastic change in my energy level. I had been feeling like this since mid 2019.

Pernicious anemia (a B12 deficiency) and iron deficiency anemia – that’s where I’ve landed, and I’m hoping when this is addressed it will address all of my symptoms. I do not like the hematologist, or where he practices, so I’m most likely going to seek a second opinion. Or at least a doctor who is interested in discussing the diagnosis with me and educating me. Once I find another doctor, this current place can pack it! 🤬🖕🤬

It’s looking like I will require monthly B12 injections for the rest of my life. I’ve been telling the doctors that I felt like I was dying, my legs felt like lead, with me consciously having to tell myself to move them when walking! It turns out when half your red blood cells are misshaped and messed up, you do feel like your dying!

I’ve been getting B12 injections all week, with an iron infusion coming tomorrow. I’m already feeling a little better, and just know by next week, I’ll be on my way to feeling like myself again. After this week, I’ll have weekly B12 injections, and then eventually monthly.

Definition from National Organization of Rare Diseases – Pernicious anemia is a rare blood disorder characterized by the inability of the body to properly utilize vitamin B12, which is essential for the development of red blood cells. Most cases result from the lack of the gastric protein known as intrinsic factor, without which vitamin B12 cannot be absorbed.

Thank you to an astute, compassionate GI Nurse Practitioner, and Cardiologist. The GI Nurse Practitioner is the one who ordered extensive labs to include many conditions. They both encouraged me to advocate for myself, encouraging me to stay on top of advocating until I made my way to the hematologist.

I’m sharing now to encourage anyone else in the midst of advocating for themselves. If something doesn’t feel right with your body, your health has drastically changed, find those specialists who HEAR you, and encourage you to stand your ground. I feel you, and I see you.

August 20 2022

Today was the first time in a very long time that I did not have to rest after having my shower. Yes! For the past couple of years, I had to sit down and rest for about 15 minutes as I was out of breath and light headed.

I’m finished with the daily B12 injections, and the iron infusion. Can I be Iron Woman now? On to weekly B12 injections next week.

A bit more about Pernicious Anemia from The Cleveland Clinic:

What is pernicious anemia?

Pernicious (per-nish-uhs) anemia, one of the causes of vitamin B12 deficiency, is an autoimmune condition that prevents your body from absorbing vitamin B12. Without adequate vitamin B12, you have fewer red blood cells carrying oxygen throughout your body. You can have pernicious anemia for several years before noticing changes in your body. Left untreated, pernicious anemia can cause serious medical issues, including irreversible damage to your nervous system. Healthcare providers treat pernicious anemia by prescribing vitamin B12 supplements.

August 25 2022

I am feeling so much better, with more energy than I’ve had in a very long time. I’ve danced every day this week, gone for a swim every day, and it is wonderful.

I’m still having issues with my GI; which is why I was seeing the GI to begin with. Hopefully we’ll get those sorted out soon. Whew!

Hallelujah!

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here. 

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Latest News: Celebrate with a Love Train – I Did It!

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(Photo of me at Washoe Lake – 2016)

June 25 2022

I just paid off the last of the debt incurred during the 8 years of financial struggling we went through. 🎉🎉 The financial struggles finally came to an end in the beginning of 2020.

I look back at myself during those times, living with heaviness like a storm cloud that never dissipates, with awe and appreciation for how I managed.

It all began in 2006, with a separation, followed by divorce in 2007. Absolutely everything was in my name, as the person I married had poor credit. I had excellent credit. I paid for things as long as I could, using all savings, all retirement money, giving my car back to the bank, until I had to file for bankruptcy in 2009.


(Photos of us having a “going away” party for the car)

With poor credit, I could not get approved for any type of credit. We lived off of what money I earned, Lillian’s SSI, and about $300 in child support. Then when I finally was approved for credit, we lived off of credit, paying the minimum each month, just to borrow from it again the next day or so. It was an incredibly draining time, emotionally and physically.

My way of dealing with much of our experiences during that time was to make everything an adventure. For my sanity, I had to do this. Living as a family of 3 in a 1 bedroom, 1 bath 800 square foot place for a little over 4 years began as an adventure, ending with feeling like a caged bird set free. Not having enough money to pay for food, rent, utilities, with a constant thought stream of “How am I going to pay for this?” is exhausting.

Having this experience, along with being a parent to Thomas and Lillian, has been absolutely life changing. The Before Camilla was a judgmental, stuck-up, non-empathetic, it’s-your-own-fault-you’re-in-this-mess, take-care-of-it-yourself person. I mean, I was still a nice person, but I cringe at some of those old beliefs. Life took me by the hand and said, here, have these experiences and see if you feel the same.

This melted the hard shell surrounding my heart, causing it to expand with empathy, love, and understanding for my fellow humans. I wish I could have gotten to this place without having to have had the harsh experiences. Yet, for some, this is what it takes.

I do not share this for sympathy. I share as that’s what I do. I share so that you can celebrate with me. Celebrate for yourself, too. Celebrate your own resilience with me as I celebrate mine.

I hadn’t intended for this to be so long! Once I get going, I can’t stop! May we all shed the hard shell surrounding the heart. 🥰🥰🥰

I don’t know how I would have made it without the help of my Mom and Frank, my Daddy, and many loving friends. Thank you all so very much!!

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here. 

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

 

A Truly Wonderful Adventure – Where Would You Fly Review

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Oh wow! What a wonderful world Lillian transported me to. What a beautiful soul she is!
I loved the beauty, the innocence, the depth and the magic of Lillian Darnell’s writing. This was truly a wonderful adventure into her amazing world and I enjoyed reading every story and every quote. Such beautiful quotes that really touched my heart. – Jennifer Jansen

For more information about Where Would You Fly, go here …

http://www.WhereWouldYouFly.com

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here. 

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Get to Know Me: Bizarre Happenings in Nevada

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I’m a member of an author/book reader facebook group, and the admins ask great questions. I decided to turn some of the questions into a “get to know me” series. I would also love to hear your answers to the questions posed in the series. Thanks Helen for asking such fun questions!

What happens in your country/town/area regularly that people in most countries would find strange or bizarre?

I don’t support or condone it, but there’s a yearly Camel Race in Virginia City.
Nevada is also the home of Burning Man; which I’m sure some think is strange and bizarre. I’ve never been as I’m not into suffocating in the dry heat of the desert, with being devoured by the sand on top of it. We do get the benefit of receiving some amazing art pieces that are put on display throughout Reno, after the event.

What about you?

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here. 

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Throwback Post: Reblog: Ninety Minutes of Pure Bliss With New Additions

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May 21 2021

Have you ever had your face, jaw, and ears massaged? I highly recommend it. Home from 90 minutes of pure bliss by way of a massage. I shall now melt into the kitchen to make dinner. I’d rather melt into a hot shower and soak, followed by melting into the couch. But that will have to wait until after dinner.

…. And scalp, and fingers, and toes, and butt …. That was such a glorious massage ….

June 3 2021

Lillian and I are just back from a walk. We found a ping pong table! I love ping pong! It’s been years since I’ve played. Bocce ball court is finished, too. And I took a photo of the chess table that Thomas and I discovered Tuesday night.

Go here to read more …

Ninety Minutes of Pure Bliss With New Additions

 

Celebrating the 52nd Birthday – Camilla Downs

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On February 26, 2022 I turned 52 years old. I seem to be behind in many non-urgent tasks these days. My body decided to get my attention once I hit 50, along with being extremely exhausted. I’ve had my hands full addressing some health issues, along with addressing urgent or deadline intense matters for Thomas and Lillian.

We had a low-key, mild celebration. The Romano Duo and my brother came to our place, with Frank kicking things off by making me a couple of virgin bloody marys. We had lunch together, opened gifts, and then enjoyed a vegan, strawberry rhubarb pie.

We also celebrated a win for Lillian. She has pretty much conquered her fear of cats, so we lit a candle for her to blow out in celebration. There’s something to be said for exposure therapy. It absolutely worked magic when Thomas finally convinced me to allow him to adopt a cat. Chad Basil the First came into our lives in December 2021 for Thomas to care for and have as emotional support. Lillian has slowly warmed up to him, at about the same pace as Basil has taken to open up to us.

It’s been all I can do to keep up with these matters, with my precious walks growing less frequent. I’m hopeful that I’ll be able to resume the frequency soon. For a while now, I’ve not been posting as much on social media as I have in the past. I’ve also not written anything for a couple of years. I’ve been, and am, numb and exhausted. I am in the midst of addressing the health issues, with hopes that this helps to lift my spirits.

I have just completed four weeks of physical therapy for my neck, with four more to go. This being an initial step before having an MRI. I’m seeing a GI doctor to address gut issues. I’ve done a SIBO test, and am awaiting the results. I’ve had a full gut ultrasound which indicated a dilated (enlarged) bile duct. I’m now scheduled for an MRI of my pancreas, gallbladder, and all ducts to determine the cause of the dilated bile duct. I’m also scheduled for a colonoscopy and endoscopy in May. The colonoscopy is just routine as I’ve never had one. But the GI doctor added the endoscopy to see if we can determine the cause of some additional pain and discomfort. Additionally, I’m scheduled with a cardiologist to have an echocardiogram performed.

We continue to have many beautiful and exciting events and wins come into our life, too. I’ve posted about those as they happen. I’ve always been one to keep the unlovely moments of life to myself until I’ve had time to process it and/or I’ve determined the solution. This is the Way (for me). I love The Mandalorian, by the way!

Team TLC is looking forward to attending the Chromosome 18 Family Conference this summer in San Antonio, after it has been held virtually the past two years. Our future is bright, with many lovely moments, trips, and celebrations on the horizon. The time I currently find myself seems to be a grease-the-wheel, fill my cup moment as we prepare for the exciting times that await us.

I share with all of you, as that’s who I am, and who you know me to be. This is my path, to be authentic, vulnerable, and to let others know they are not alone. xoxo

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here. 

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Throwback Post: Reblog: Lillian and Camilla May 2021 Date Day

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May 25 2021

Lillian and Camilla May 2021 Date Day

It was a momentous date day. First time for Lillian to go inside of anyplace in just over a year. She was excited. Clothes shopping for our first stop.

    

Part 2 through I lost count, as we made so many stops, I’m delirious.

Fries and lemonade at Noble Pie Parlor. Then to pick up dessert. Watermelon macaroon for Lillian, ginger rose dark chocolate for me.

Barnes & Noble, Michaels, and stopping to gaze at the full moon on the way home. (Psst …. I do not like shopping. Drains every inch of energy out of me. I shall crawl into bed, and pass out shortly.)

To see more …

Lillian and Camilla May 2021 Date Day

Throwback Post: Reblog: Building a Computer – Assistant to Thomas Darnell

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Building a Computer – Assistant to Thomas Darnell - featured image

May 18 2021

For the past 5 months I’ve been buying parts from a list that Thomas created, 2-3 every month. Finally bought the remaining components last week, with the monitor arriving yesterday.

For the past day and a half I’ve been “Assistant to Thomas Darnell” as he built it. It is all finished now! Didn’t have “helping build a computer” on my 2021 Bingo card.

“It’s like a LEGO set with tiny, delicate parts.” – he says as he’s putting it together …

I’m so happy for Thomas. His computer has barely been limping along for the past 6 months.

   

To see more, go here …

Building a Computer – Assistant to Thomas Darnell

Throwback Post: Insurance and Medicaid Madness

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**THROWBACK POST**

April 2021


(Photo from Pexels)

It’s been an intense week of advocating, buffered with attending two Zoom poetry readings, getting my first vaccine shot, and April date day with Lillian. The poetry readings were great fun, and our date day was beautiful!

Read on if you’re interested in some venting about insurance and advocating. Otherwise, hope you’re having a GREAT Saturday!

What I would like to know …

Why provide medicaid to folks if barely anyone takes it? (Also, looking at why they don’t take it, very poor reimbursement as opposed to other insurance, way too many hoops to jump through, many of them being repetitive, and need to have a staff of 2 or 3 completely dedicated to dealing with medicaid.)

Why forbid people who have this worthless insurance from getting their own insurance, which I quality for, but the insurance agent cannot proceed (due to us having this worthless insurance), as she and I will get fined?

Why forbid people who have this worthless insurance from self-paying providers who don’t take this worthless insurance? (I have a specialist who is seeing me for free because I cannot pay her as she risks going against the rules, and I risk losing this worthless insurance. I was willing to pay her, but she cannot accept it. She is signing up to take this worthless insurance, but it is going to take a FULL YEAR to process.)

I just received a dermatologist referral for Thomas. We live in Reno. This referral is for Las Vegas, EIGHT hours south of here. I had already found someone here, but it was going to be a hassle with two appointments required. However, since the place in Vegas offers tele-health, we will go ahead with them. I’ll keep the other appointment for now, as we see how the Vegas place goes. (March 2022 Update: By the time I called to schedule for his third follow-up they had discontinued tele-health visits. So we just had to wing it with the knowing how to proceed.)

Also from Thomas’s and (used to be) Lillian’s pediatrician’s office: Referrals to places I do not want to use. I’ve been doing this for 19 years, I can pretty much tell if something is going to be a good fit. I spend weeks emailing and calling specialists, therapists, and doctors to find someone who takes the worthless insurance and who doesn’t have a two year waiting period.

Also, learning two weeks ago that Lillian’s pediatrician will no longer be her doctor. In the middle of a pandemic. I’ve got to find a new doctor, skilled at working with special needs folks, and once finding this person, educate them about Lillian. In the middle of a pandemic. Why couldn’t the office have sent something reminding me that Lillian’s time there was coming to an end? Why won’t they help us transition?

Remember in December when I was searching for a therapist and a psychologist (for Autism and IQ testing) for Thomas? Thomas has had two sessions with the therapist I found, and he likes her (had to wait two months for an opening.) This person is not where his doctor’s office was referring us. I found her on my own by calling and emailing folks from a google search. He has the Autism screening in August with another person I found – not where the pediatrician’s office referred us. I found her on my own).

I had put Thomas on another waiting list for both of these items. I phoned there yesterday to see if Lillian could take his slots on the waiting list, as these need addressed with her also. Success! (Actually, the person I spoke with in December is no longer there, and failed to put Thomas on the list. I spoke with the office manager and she added Lillian where Thomas would have been on the list.) Updated Note: Before Lillian left her pediatrician, they referred us to a neuropsychologist in Las Vegas. This is a 4 day appointment! Just nuts!

Thank you to my contact at the Nevada Governor’s Council on Developmental Disabilities for letting me share these frustrations with her, passing contact information to me, and just being there for me to vent, at times feeling sorry for myself.

Thank you to her also as I needed to know how I can get Lillian vaccinated without her wearing a mask. We are talking about someone who has an intellectual disability who you cannot reason with, who is not rational about the importance of mask wearing. Thomas and I have worn masks this entire time, and have not gone inside anyplace, other than the grocery store, and to pick up to-go food from restaurants. Lillian has not been inside a place for over a year and a half. Lillian’s “not” pediatrician’s office was no help, and SRC (Sierra Regional Center) was no help. I now have a name and contact number for when Lillian is ready.

I’ve joined a local special needs parenting facebook group in order to share and get feedback. Just did that Friday, and am taking the weekend off from advocating! Back at it next week.

March 2022 Update: Nearly a year later. Thomas and Lillian have both had a neuropsychological evaluation. I’m scheduled for an evaluation in October 2022 with the same person who did Thomas’s evaluation. I’m now searching for a pediatric psychiatrist that takes Medicaid (oh, joy!!).

We gave up on a local dermatologist for Thomas, and will revisit in the future if need be. Lillian has a new doctor that I found on my own, without going through Medicaid. I switched to her, also. Thomas may switch to her, too. 

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here. 

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.