Julie Arduini's Blog, page 116
October 2, 2015
Invisible Illness Week 2015: Our Rare Treasure
This week I’ve been sharing different aspects of invisible illness as it regards to our family and those who have a diagnosis that is real, but perhaps not visible. My hope is we all take a look at how we approach situations like this and find ways to improve.
Today I want to share the best source I’ve found so far to describe one of the issues our daughter has. Although she was diagnosed with Albrights Hereditary Osteodystrophy a couple years ago, we weren’t told much. We knew we had to watch her calcium, Vitamin D and phosphorous levels to avoid seizures and help her joints.
It was a couple months ago I was floored, and honestly, devastated at times, when we learned more about AHO and how it affected our daughter. Talk about invisible—in a matter of months her bones fused so fast that I was given the news that at 12 years old and 4’8″, she was done growing. Talk of hormone injections were tabled because it wouldn’t help her grow. If we used them to stimulate menstruation as her bones measure her at 17 years, it would make her bones fuse faster. We have been told when this process starts naturally, her bones will continue to fuse.
It’s typical for me to run and research. I want to be armed and informed the best I can to advocate for her. I’ve learned that AHO is a rare disease, that less than 200,000 people in the US have it.
One thing I found was a video from a 2010 piece on 20/20 called, “What’s Wrong with Carter?” I found it very informative and was able to touch base with Carter’s mom and share notes. There is a lot there is similar, although I believe Carter has a chance at height that we might not have.
It’s obvious there is so much for the doctors to discover here. We’re learning as we go. And trusting God along the way.
If you’d like to watch the 20/20 piece, click here.

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October 1, 2015
Invisible Illness Week 2015: Don’t Talk to Us if You’re Going to Say…
This week I’ve shared pieces of our journey regarding invisible illness and our daughter. As I read through group pages on FB, friends with invisible illness, and our own experiences, there are certainly things people have said we wish they hadn’t.
I thought I would share some of those things so we can be thoughtful and not say it.
—You’re being too dramatic about…(symptoms, diagnosis, etc…)
—Do you think maybe you’re imagining things?
—Maybe you should trust God/sin less
—You aren’t sick, the doctors are making things up to line their pockets
—No one can be that tired
—You’re just lazy
—You’re just fat
—Just exercise. No pain, no gain, right?
—I don’t think it’s fair you get special considerations when the others who have no issues don’t.
—I wish I could miss school/work like you do
—You’re too young to have so many problems
—You don’t look like you’re trying very hard to improve

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September 30, 2015
Invisible Illness Week 2015: I Fight with Caffeine
In years past, I shared stories about my own journey with severe PCOS, infertility and hormonal imbalance. Those were tough days and I’m thankful most of that fight is over. (I had a total hysterectomy in 2008 that relieved 95% of my pain and hormonal issues.)
This week my sharing is for our daughter. I blogged about my quest on her behalf for answers, and the fight against ignorance. Today, I share some specific issues she faces on a daily or near daily basis that most people don’t see.
She is twelve now and her chart reads congenital hypothyroidism, Hashimotos and Albrights Hereditary Osteodystrophy. I believe the first two weave together from the Albrights, that diagnosis is so rare it is hard to find information on it.
What people see is a short-statured tween who is overweight with a round face and short fingers/joints compared to her peers. The diagnosis and the reality for us is there is a learning challenge for her. What comes easily for her friends, she has to work for.
And what makes it even harder is there are times she is absolutely exhausted.
I don’t mean I stayed up too late and I need a nap.
I mean she sleeps at least eight to ten hours a night and then will fall asleep on the commute home from school and take a two hour nap. And still go to bed at the same time.
For the doctors that ask for anywhere between 20 and 60 minutes of exercise every day from her, the school year is near impossible to get that from her. Last week she asked to take a walk after dark. This was so rare and I’d already taken a little walk and a bike ride, I threw on my sneakers and off we went. Tonight? She has a test tomorrow. She barely made it through dinner. She’s sleeping hard as I type. When I’m done here I have to wake her and urge her to give her all when I know she’s wiped out.
It’s hard to discern what she can handle and what’s too much, so we adopted the attitude that we’re always going to do our best. I know if the gym teacher told her to forget about wellness, have a seat, she’d do it. But we expect her to try even if she is the slowest kid on the team.
To keep her moving forward, it takes energy for me. Most of the time I’m up for it, but there are times I’m tired or have other projects calling for me as well. That’s why I have my coffee most mornings. I refuse to let her coast through life because she has a chart filled with medical jargon. At the same time, I’m ready to advocate toward anyone thinking she is milking her exhaustion. Trust me.
One thing I hear from people with Hashimotos or other thyroid issues is that when they tell people they are tired, the compassion isn’t there. Usually resentment is what they are met with. Hopefully these posts this week are raising invisible illness awareness for us all.

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September 29, 2015
Invisible Illness Week 2015: I Fight Against Ignorance
I’ve told this story before, but I think it explains invisible illness so well that I think it’s worth repeating. Hopefully you take away the lesson that when you look at a person, you probably aren’t getting the entire picture.
Our daughter was three years old and just starting to stabilize from chronic conditions. Her breathing was so difficult back then that she was on steroids for over a year. She’d been so sick her first year she had been almost vegetable-like. Her thyroid was off. She didn’t have one doctor, she had four, plus three therapists, a nutritionist, and one early intervention advocate.
And, right.
Me.
We were at the local grocery store. My eight year old was walking along the cart and our three year old was in the child seat, laughing and oblivious at what was to come. A woman, who at the time looked to be in her seventies, grabbed my wrist. She said,
“You are killing that child.”
I knew exactly where this trip was going.
Our daughter, then, and even now, as her diagnoses multiply, is obese.
“I am a nurse, and I’m telling you, you’re killing this child. You are giving her diabetes.”
While she is arguing, I try to interfere. “You only see a small part of the puzzle.”
Another thing I tried to say: “She has a team of doctors.”
Then there was, “We are working on her together.”
The woman would not stop and a crowd started to gather. Over and over she reminded me she was a nurse, and that my child was fat because of me. It didn’t matter how many times I told her there were several health issues in place that we were working on.
Finally, I’d had enough.
“M’am? Do you know Jesus? Because the way you’re treating me, I’m inclined to think you don’t. Let me tell you, I do know Him. And when I was pregnant with this miracle, He promised me she would be an overcomer. And I stand on that promise. Good day.”
I shook my hand to rid of her grip and got out of there as fast as I could.
That experience rocked me so hard I still tear up from anger when I dwell on it. Okay, like right now.
What that “nurse” failed to consider was my eight year old. We got home and he asked me if his sister was going to die. Because what that seventy-something “nurse” didn’t know was when his sister was three months old, she was prescribed the wrong dose of a medicine she never should have been prescribed. Her pulse was gray when we arrived at the hospital and we were told by other “great” nurses that we’d probably be planning a funeral, not taking her home. So to hear “die-abetes,” imagine what was going through his young mind.
That’s ignorance—to judge a situation and have the audacity to grab a stranger and go off on it. Yes, I still look up when I hear a crying child that won’t settle, but these days I wonder if they are on the autism spectrum or having a bad day or both and instead of thinking about a bratty family, I pray for them. Because I’ve been there.
One of the doctors on her team not long after that episode saw my two kids together, very drastic in weight, and asked if people say things. I started to cry and nodded. He told me I have to let it slide, that people are rude and don’t understand what we do. He explained that he has twins. One is very healthy and the other has issues that again, at face value are only part of the puzzle. They were at the mall and he walked away to get a pretzel. When he returned, his wife was crying. Someone went up to her, looked at the twins, and saw the second twin in a stroller when he was old enough to be walking by the stranger’s standards. The stranger looked the mom in the eye and asked, “What? Did you drop it on its head?”
I cry every time I think about ignorance like this. And then I get so angry. Invisible illness has so many facets to it. How dare we claim to know everything with a glance at a stranger?
But as a society, we do.
God, forgive us.

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September 28, 2015
Invisible Illness Week 2015: I Fight for Answers
It’s a weird place to be in. My fight isn’t my own, it’s for our daughter. And part of why I fight is so that she can blend in and enjoy many things that come naturally for her peers. My fight is invisible to her for the most part, but I thought it was time to make our journey visible to you.
I fight for answers.
When our daughter received an abnormal newborn screening and we were told to re test in case of a false positive, I went that same day. And I waited for answers for three weeks. I called the office to learn the receptionist had the results all along and never called. She gave the results, not knowing how to read them. She told us it was a false positive. She read the wrong category, she gave the adult levels, not newborn. She also didn’t bother to send a prescription from her inbox to the pharmacy that would have given our child thyroid medication. Because of this, we were told to prepare for mental retardation. She missed eight weeks of needed medication. I fought for answers and change.
Through the years I’ve fought for doctor appointments for thyroid issues and asthma. I fought an ER when we sat 12 hours watching nurses and aides flirt with each other while our baby was struggling to breathe and throwing up. My letter to the president of the hospital was used until the hospital closed to train nurses on proper patient treatment as I had a blow by blow description of all we faced as a family—everything but treatment.
I’ve fought for therapies and services.
For an IEP to be implemented.
For insurance to cover appointments, prescriptions, lab work, and therapies.
For teachers who didn’t think special need kids should get special services because the other kids weren’t signaled out, why should they?
I’ve fought for lab work and new information. I’ve fought for updates.
And here we are. She’s now 12. The asthma is almost a memory. Her congenital hypoythroidism is the tip of the iceberg, we’re learning. A couple years ago we learned she has Albrights Hereditary Osteodystrophy. This year it was confirmed she has Hashimotos. She is in a regular classroom with an IEP. She participated in our church’s Fun Arts competition where she sang, danced, entered a photo. She was part of the school’s musical with song and dance steps despite her challenge to memorize. She has friends over and also goes to sleepovers, although I worry about medicines and how her sluggish system will affect her during the night.
I’ll share specifics in another post about her diagnoses but I fight so for as long as possible, our child won’t have to.
The consequences have been steep, honestly. I believe I went into early menopause in part due to the stress we had those first few years. It is lonely. This is a fight my husband doesn’t want to be involved in. We made it through the worst experience when she nearly lost her life at 3 months old. Anything else that isn’t life or death, I can’t blame him. But she needs the labs, the IEP, appointments, prescriptions, advocacy. It falls on me. This year has been challenging as she is understanding more about what doctor appointments are about and what others say around her. It only puts more fight in me.
I fight for answers. I fight for our daughter. And I’ll fight after this week of awareness is over. That’s what moms do.

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When Obedience is Hard by Jennifer Slattery
Julie’s note:
Please welcome author Jennifer Slattery and her post, When Obedience is Hard.
He was a simple fisherman by trade. He worked long hours late into the night. Each day as he prepared his nets and pushed out into deeper water, one thought occupied his mind:
How many fish will I catch today.
In other words, what will the state of my finances be come morning.
We’ve been there, right? Living paycheck to paycheck, our thoughts so completely consumed by the day-to-day, plain survival, nothing else penetrates our radar.
Until one day, our nets are filled to overflowing. What do we do? Stockpile? Start canning?
Or leave it all–our biggest dreams come true, for an even bigger dream–a God-sized dream. One that will affect not only our today and tomorrow, but our eternity, and perhaps even the eternity of countless others.
This was the choice a man named Simon wrestled with some 2,000 years earlier.
Here’s the scene. Simon was beat. He’d worked all night long and had nothing to show for it. Nothing. Nada. Zilch. His hands were probably sore from pulling in water-drenched nets, although not as sore as he’d like them to be, seeing how his nets were empty when he pulled them in.
So here he is, tired and maybe even a bit defeated. Ready to go home. A crowd gathers, and amidst the crowd stands a man. The man approaches, an immense crowd behind him, and asks to borrow Simon’s boat.
Simon could’ve said no. He could’ve gone home. To bed, grabbing a few hours sleep before starting the monotony over again the next day, hoping maybe tomorrow would be better and he’d actually catch some fish.
But he didn’t. He let the man onto the boat, then, when asked, pushed back out into the water. The very water he’d failed in but a moment before.
And there he sat, maybe for an hour, maybe six. The Bible doesn’t tell us, and I suspect it doesn’t really matter as I believe the hardest moment was when Simon pushed back out. That moment when he chose to serve another rather than himself, not knowing what might come out of it. Other than a few more hours of lost sleep.
The man talks, and Simon waits. Then, when the talking is done, the man looks Simon in the eye and says, “Go out where it is deeper, and let down your nets to catch some fish.”
In other words, “Go back to where you failed and try again.”
“Master,” Simon replied, “We worked hard all last night and didn’t catch a thing.”
Here, I envision Simon letting out a defeated, slumped-shoulders sigh, then he says, “But if you say so, I’ll let the nets down again.”
What would you have said? We know the end of the story. Simon obeys and lets down his nets, finding them bulging with fish when brought back in again.
But Simon didn’t know this. He knew one thing–this man called Jesus, the One who claimed to be from God, the One who heals the sick and feeds the hungry, told Simon to “push out in deeper water” and let his nets down again. Because regardless the outcome, he knew this time would be different, because this time, God went with him.
Where are you? Are you standing at the water’s edge, with one eye on obedience and the other on “what makes sense”? What’s holding you back? Past failures? Wrong motives? Insecurities or fears?
Push out into deeper water, my friend! You’ll find Jesus is already there, waiting for you, and whatever He has planned is so much better than anything else you’ve ever tried to do on your own.
Jennifer Slattery writes soul-stirring fiction for New Hope Publishers, a publishing house passionate about bringing God’s healing grace and truth to the hopeless. She also writes for Crosswalk.com, Internet Café Devotions, and the group blog, Faith-filled Friends. When not writing, Jennifer loves going on mall dates with her adult daughter and coffee dates with her hilariously fun husband.
Visit with Jennifer online at JenniferSlatteryLivesOutLoud.com and connect with her on Facebook at http://www.facebook.com/JenSlatte
Abandoned by her husband for another woman, Tammy Kuhn, an organ procurement coordinator often finds herself in tense and bitter moments. After an altercation with a doctor, she is fighting to keep her job and her sanity when one late night she encounters her old flame Nick. She walks right into his moment of facing an unthinkable tragedy. Because they both have learned to find eternal purposes in every event and encounter, it doesn’t take long to discover that their lives are intertwined but the ICU is no place for romance….or is it? Could this be where life begins again?
Intertwined, part of New Hope Publisher’s contemporary fiction line, is a great reminder of how God can turn our greatest tragedies and failures into beautiful acts of love and grace. Readers will fall in love with the realistic characters and enjoy the combination of depth, heart-felt emotion and humor that makes Jennifer’s novels so appealing. Readers will be inspired to find God in every moment and encounter in their own lives!
Buy it:
Amazon: http://www.amazon.com/Intertwined-Jennifer-Slattery/dp/1596694432/ref=asap_bc?ie=UTF8
B&N: http://www.barnesandnoble.com/w/intertwined-jennifer-slattery/1121268293?ean=9781596694439

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September 27, 2015
COTT: Pick Your Favorite Read
Clash of the Titles presents four new
end-of-summer reads!
Peruse the images, read the
blurbs,
then vote on your favorite in the
survey.
I know which one is my
favorite.
Enjoy, dear readers!
[image error]
Children of When by Jennifer Redmile
To fulfill a prophecy, Raff, Leah, and Belle must find and reunite three
missing pieces of an ancient amulet, and in the process learn to control
and use their newly discovered unique Gifts. Dark forces conspire to
prevent the resurrection of the Amulet, and the journey becomes one of
survival…turning fourteen was NOT supposed to be this hard!
~~~~
[image error]
Privileged by J. M. Downey
Katie Morris never imagined she might meet the son of the nation’s leaders
or that he would strive to capture her heart with his promises of a
happily-ever-after. However, a dark nature lurks inside her prince, which
clashes with his charm. Will Katie be able to hang on to her fairy tale
when the man she loves turns into the man she fears?
~~~~
[image error]
Midnight on the Mississippi by Mary Ellis
As a newly-minted PI and a New Orleans stockbroker encounter sophisticated
shell games, blackmail, and death threats, danger swirls around them like
the mysterious dark water of the bayou. Only their reliance on faith and
fearless determination give them hope they will live to see another
day.
~~~~
[image error]
Unexpected Family by Jill KremererWhen Tom Sheffield finds out he has a four-year-old daughter, he struggles
to forgive his ex-wife, Stephanie. But as the three of them spend time
together, Tom realizes he was also to blame for their failed marriage, and
he’ll do things differently…if Stephanie will give him a second
chance.
Create your own user feedback survey

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September 26, 2015
Sabbath Sunday: When You Lose Your Way
Last month I shared that I had to take a detour and although inconvenient, without it I never would have found a beautiful lake at sunset.
The detour is now done and a new bridge constructed. Guess what?
Because I haven’t driven this route in months, I forgot my way.
I had to really focus to remember what lane I needed and how to get to my destination.
Then it hit me.
This year my God-given theme is revive. I learned how burned out I was and took steps to recapture my time with Him and find that revival for me.
I’d let so much of life, even good things like serving, dictate what I was going to do and when. I pushed away devotional time in favor of getting more done. It didn’t take long before I was cranky, tempted and just plain tired. When I tried to fix things myself, I was lost.
I forgot my way.
With the new bridge, there were signs that helped me find my way. Directions to guide me to my destination.
So it is with my life.
Here are steps I’ve taken so I don’t get lost:
Daily reading plan on my Bible app. Takes minutes, effects are for a lifetime.
Bible studies with the Women’s Bible Café.
Verse Mapping. I looked up how to do this on Google and pretty much follow their advice.
Verse Art. I’m a terrible artist, but I try to take a word or phrase and on the margin and make that stand out with some kind of lettering or color.
Have you forgotten your way? Ask God to show you His directions to find your way back. He is faithful.
Julie Arduini image, Western Reserve Rd., Rte 164 bridge.

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Saturday Confession: My Relationship? It’s Complicated
If you’re on Facebook, you’ve seen the relationship status choice: It’s complicated.
Yeah, that’s me.
Not my marriage, but me.
And Jesus.
What makes it so frustrating is Jesus isn’t feeling any complications. He knows.
And I’m really having a hard time with that.
There are things I know about me that I finally receive.
I’m an intercessor. I’m called to stand in the gap and pray.
I’m a scribe. When He tells me to write, I do. I write what He tells me to write. Every time.
I’m a vessel of surrender. When He asks me to do something, I’m on it. What used to take years to obey is now down to days. There is such freedom in that. But it is a lonely, crushing road.
I believe God. He gifted me a mountain moving faith. If He’s asked me to believe for it, I do. Because, He is.
But I’m still human and within the above come complications. Whether it’s one of the above, I’m an introvert, it’s a Julie Arduini thing, I don’t know but I’m stuck in the cycle of I enjoy being alone and yet the loneliness of life at times is so harsh I wonder at times if I can stand under it a second longer. This year has been particularly tough.
Then there’s the prayer life. There are some prayers that are 20 years old and they are not only not answered, they are worse. I get people and their free will play a part but where is He in this? The fallout are death to promises and I fear death itself. How do I raise my hands in worship when I can’t come to terms with this?
There’s the mixture of the two. The loneliness of prayer. I used to long to be invited to a dance—any social event that featured the very people who remembered my number when it came to prayer. Then I realized I probably would stand in a corner and wish I were home. Now I wish people reached out and asked if they could pray for me or if I had any needs. There is a very, very small group that has done that this year and they have no idea how lifesaving that was to me at a critical time. But the ache and pain of people who ignore me until they have a prayer request, honestly, what can I do but go to the Source for this?
In full transparency, my attitude hasn’t been perfect. There are more times than not, especially this month, where I felt entitled. Because I did A, I deserve B. Well, that’s not true. There are so, so, so many things that are on hold in and around me. Picture a roller coaster taking those baby steps to the top. When does the fun part come? When do the answers and release come? That’s where my thoughts are at.
The good news is I fight this out for a bit and I’ll settle down and in time I’ll look back and see what He saw all along. I’ll confess my attitude and He’ll pat me on the shoulder and we’ll move forward together like we always do. The loneliness part, that I don’t know how that’s going to work.
For now, this is Saturday Confession and here I am telling you, it’s complicated.

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September 23, 2015
Why is Loneliness So Hard to Talk About by Cherie Burbach
Why Is Loneliness So Hard to Talk About?
In writing about relationships for over a decade now I’ve noticed a few things that continually stand out: people wanting more friends in their life, people wanting to understand what makes that friend of theirs tick, and people trying not to look too desperate for friends.
I think all of these things are related and pretty universal. People want friends but they are afraid to be too vocal about it. They have a hard time admitting that sometimes (or more than sometimes) they’re lonely. That’s a shame, because I think people who understand what’s missing in their life and have a desire to change it are brave and should be applauded. But we don’t usually do that as a society.
I have a lot of great friends in my life but at one point I went through a period of time when I was very lonely. My husband traveled for work, some of my closest friends moved, and suddenly I just found myself without the particular types of friendships I most desired. And that’s the key with loneliness. It isn’t necessarily about having lots of friends, it’s about having the close connection you crave.
I write about relationships and I’m pretty comfortable admitting things, so I told a family member that I was struggling with loneliness. And you know what she did? Snorted some snotty response about how she wished she had time for loneliness! She was too busy to be lonely!
I was busy, too. Being lonely doesn’t mean you don’t have enough to do. And that’s when it hit me, that there are people who experience loneliness and aren’t as comfortable talking about it as I am, and this is the type of response we (their closest friends and family) give them. Some snarky response that is meant to make them feel worse than they already do.
So when I wrote this book, I wanted it to be for people who might just want a few new friends (maybe the ones you have just aren’t giving you the types of connection you want right now) or those that need to meet a few people. Maybe they are feeling lonely right now. Maybe they just aren’t totally happy with the state of their relationships right now.
100 Simple Ways to Have More Friends is a handbook of sorts, with “meeting people” tips interspersed with “nurturing your friendship” type tips. It’s a book you can go back to occasionally or one you can read right through and try out the various suggestions as you absorb them. Friendships are fluid and even when you have long time friends that have been in your life forever, you might still need a few more who get you. It’s as simple as that.
In 1 Peter 5:7 we read “Cast all your anxiety on him because he cares for you.” I want people to know they are never alone, even in the dark, lonely times. Even when the rest of the people in your life don’t get where you’re coming from. He is always there keeping us company and encouraging us. He puts the right people and situations in front of us to help us through.
The more friends you have, the more you’ll have the right people in your life to give you the support and connection you desire. Having more friends means you’ll consistently connect with new people and also keep the good friends you already have. If your friendships don’t seem to stick, you’ll be making friends and losing them quickly. The key to having more friends is increasing the number of people you meet on a regular basis and holding on to the great pals you already have.
This book contains one hundred suggestions on how to make new friends and also strengthen the friendships you already have. The tips are varied, with suggestions on how to meet new people interspersed with ideas for nurturing your new and existing friendships. To purchase, click here.
Cherie Burbach is a poet, mixed media artist, and freelance writer. She’s penned 17 books and has written for About.com, NBC/Universal, Match.com, Christianity Today, and more. Whether it’s writing articles or creating art, all of Cherie’s work centers on relationships and faith. She includes book pages, music sheets, and other fabulous random things in her art to create something that celebrates a hopeful message. Visit her website for more info, cherieburbach.com.

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