She’s walked through the fire and the storms while dancing in the rain …
Her life has been difficult and filled with excruciating pain …
She’s suffered many losses in such a short time yet she continues to believe that in the end… it will all be fine …
With such strength and undeniable belief she tells me her healing will come in God’s time …
It may not be here on earth but perhaps in heaven she will be pain free…
Her words are heavy on my heart and somewhat difficult to grasp, for me…
She’s my daughter, Keyera, and she suffers from sickle cell
It’s a genetic disorder that we know all too well:
Her story is a bit different than usual. She wasn’t properly diagnosed until the age of five. My husband and I worked different shifts so that one of us was always home with the kids. At 5, she started kindergarten and became ill after the weakened live intranasal flu vaccine was given. Initially, her pediatrician thought she had the flu in spite of the vaccination. She ran fever, she was fatigued, she had to be carried or she’d just sit in one spot. After 3 rounds of Rocephin (a strong antibiotic) injections and no improvement, her pediatrician, Dr. Allardice, admitted her to the hospital. She ran various tests. She asked about sickle cell, I told her that her cousin had it and my other daughter had the trait but as far as I knew, Keyera didn’t have the trait OR the disease. I was never notified by the health department or pediatrician’s office that I saw prior to Dr. Allardice.
My daughter’s health was rapidly declining. In my heart, I felt her slowly drifting away. It seemed as though she had developed pneumonia. Treatment was started and I begged and cried for God not to take my baby away.
When her test results came back, I was shocked and in disbelief. I had made sure Keyera had all of her immunizations and that she went to all of her well child visits. She had sickle cell anemia SS and it wasn’t pneumonia. She had acute chest syndrome. Sickle cells are shaped like a sickle so they don’t pass the veins and arteries like they should. Acute chest occurs when there is sickling in the pulmonary arteries and it can mimic pneumonia. Many patients with sickle cell have passed away due to acute chest, heart attack, or stroke.
We were fortunate that she was admitted and diagnosed. Her situation was dire. She is now 22 years old. She’s had both hips replaced due to AVN (avascular necrosis - lack of blood supply to the bone) caused by sickle cell. She suffers from medical PTSD due to being in the hospital so often at an early age. She’s lost friends and in 2020, her cousin, Makayla, with sickle cell passed away.
Her journey has been challenging and she’s often called resilient but truthfully, she is vulnerable and fragile at times. She just wasn’t given an easier course to take. She often gets upset when people tell her to be robust during a crisis. The thing about pain is that it demands to be felt, no matter how hard you try to ignore it. It makes its presence known.
Unfortunately, there is not a universal cure for sickle cell anemia at this time. Not everyone can find a match or are a good candidate for bone marrow transplants. Due to my daughter’s health issues, it’s not an option. She has less than a 50% chance of surviving a transplant.
My daughter depends on blood donors to have a decent quality of life. It requires 7-10 units of blood each month. If you want to be a hero and save lives, please donate blood.
Before the monthly exchanges, she was in the hospital at least twice a month. She was miserable and asked God on several occasions to let her fall asleep and not wake up. She still has challenges but she is enjoying life and spreading awareness.
When her cousin passed away and she got to say her farewell, she promised her with weeping eyes that she’d continue to fight and educate others. I encourage you to research sickle cell anemia. If you know or love someone with it, check in on them but remember though they may be resilient. They do get tired, though they seem strong, listen and support them when they say they’re exhausted or weak. When they say they hurt, believe them. Never tell them they don’t look sick, your intentions may be well meaning but not every illness is visible.
My heart cries as my soul weeps for all the sickle cell warriors that continue to suffer or have lost the fight …
Each day they try or tried to live the best life possible with all of their might …
Simple things that we take for granted can be such a heavy burden or test …
Their bodies tire easily and they must often take a break to simply rest …
My daughter has kept her promise to her cousin. She has done several informative interviews regarding sickle cell and continue to spread awareness. Giving blood is such a simple task but it has such a great impact on the quality of life for those that need it. It cannot be manufactured, please donate blood and help save lives.
Blog host's note: I know La Keisha because she is a nurse. She does not mention being a nurse in this piece, but I feel I must. As a nurse, we take care of other mothers' children when our own children are sick at home. We minister to other daughters' aging parents when our own aging parents need us. We comfort other wives' husbands when our own husbands miss us and wish they had more time with us. So just imagine the toll this has taken on my friend, my sister, my fellow nurse. She wouldn't trade it. We nurses wouldn't trade it, our calling. But being a nurse and a mother to a sick child deserves space in this world.
Other ideas for rainy days with kids include:
Please check out the work of my fellow hope*writers:
10 Things I Learned While Waiting On God by Sharla Hallett
The Ten Lepers - A Lesson in Thankfulness by Lisa Granger
Never Travel Without These Ten Things by Jessica Weaver
10 Ways to Turn Things Around by Ashley Olivine
When Emotional or Mental Pain Is a 10 by Dianne Vielhuber
How many events have you attended that you DID NOT want to attend?
How much self-care have you missed out on in your efforts to make OTHERS happy?
How much TIME have you wasted doing things you had no desire to do?
People-pleasing usually originates from old emotional wounds. Someone somewhere told you or showed you that you weren't good enough AS YOU ARE, so you started "performing" in ways to please those same people that hurt you. Those habits of pleasing others can bleed over into your romantic relationships, work friendships, family dynamics, and regular friendships.
When we people-please, we ignore our own boundaries. Until we do THE WORK (counseling usually), we people-pleasers usually don't even know what boundaries in relationships look like or feel like.
Since I'm a list-maker, let's look at some strategies to STOP pleasing once and for all!
Let's go into each strategy in a little more detail:
Being a people pleaser is exhausting.
It's like running a marathon every day but never receiving a medal, no cheering crowd, just you.
It's the unnoticed HARD work for others' gain. So yeah, it's not even like a marathon,
because at least in a marathon your body might reap some of the benefits.
Use the strategies listed above to start changing your people-pleasing behavior.
Comment below if you can relate to this or especially if you have "overcome"
some of your people-pleasing tendencies.
Here's to Healthy Boundaries and More NO's in Your Life!
Being a human is hard. We have all of these emotions and old hurts.
We have stories to share but fear prevents us from being vulnerable.
Sometimes we hurt people we truly LOVE.
We say things we didn't mean.
We behave like children.
I don't think that will ever change, even for those of us who try to be self-aware.
What can change, though, is the aftermath.
We can own our stuff.
And I mean OWN IT.
You were a witch to Sally at work for no reason- OWN IT.
You muttered a sly remark as you passed by your spouse this morning - OWN IT.
You snapped at your kid instead of answering his question- OWN IT.
You invalidated your friend's feelings (in any variety of ways) - OWN IT.
You left someone out of a group invite- OWN IT.
We CAN own our stuff and we SHOULD.
Owning it usually accompanies and precedes a well-meaning apology.
It is the best part of the apology - so please do not overlook the ownership.
Now, go own a few things that are calling your name, my dears.
July was busy, busy for us, so I only chose
5 favorites this month. Enjoy!
2. Taco Night- always a hit in our house and a quick prep and cleanup
3. Family beach trip- see my beach packing tips here!
4. Best foot forward- an awesome family TV show for tweens or even elementary school age
5. My work bag from Threaded Pear- I get compliments on it daily!
Easy to grab my phone, laptop, stethoscope, notepad out of this open & upright tote.
Isn't it crazy how people who were once part of your daily existence can just fade away?
We can literally spend 40+ hours per week with another human (lots of humans in most cases) for
YEARS or DECADES and with one twist of fate, all of that shared time and history can seem to float away.
Forgotten? Surely not.
Out of sight, out of mind? In this fast paced world, probably.
No bandwidth to maintain a "long-distance" relationship when that
relationship partner no longer parks in your shared parking lot?
I am not sure though.
Family members can live out of town or out of state and we keep up with them, don't we?
Or do we?
Do we actually put the effort in to maintain relationships these days?
Is all of our time spent "liking" and "commenting" on strangers from across the globe?
I'm the first to admit I spend more time singing duets with random strangers on Smule
than I do communicating with my out-of-state family members.
Does that mean I don't care about my extended family?
One could argue that our online friends are more organic than say, those we happen to share DNA
or an office with... I can see that point. But, what about shared history? The office mate and the DNA-sharer
have way more memories with me than the Randoms I have something-in-common-with online.
But is it quantity of memories or quality?
Just because we both attended a work cookout or a family wedding-
does that mean more than shared interests and values with someone
who doesn't "have to" spend time with us?
Ever had someone in your life for just a season?
The season ended for whatever reason: timing, location, circumstance.
You and the other person knew it was a season, so you felt some closure.
If you ever see that person again, awesome, what a pleasant surprise.
If you don't, no worries, all is well.
Perhaps we should all view each relationship we have as seasonal.
An at-will partnership. It can end at any time.
That way when our phone doesn't ding or our mailbox remains empty, we are not disappointed.
We will know and understand that these are just the ways of 2022.
No one attaches.
After all, there are millions of other shiny dots on the palm-sized demon calling each of our names.
Faces we may never see in person. Voices we may never hear in real-time.
Skin we may never touch. Meals we may never share.
But let us not forget, those "relationships" end too!
Accounts are hacked or closed. Real Life occasionally happens to our online friends
as well and they may not be available to us.
I guess I just get sad when I think about today's world for my kids.
How do they know what's real and what's not when it comes to friendship (or even family)?
There used to be something to be said for shared zip codes and shared uniforms.
Quantity of memories somehow added up to some quality of memories.
Now it's all a game of chance. Some people stick with us and most don't.
Loyalty? Loyalty seems to happen more for brands than it does for us as individuals.
And these are the rambling thoughts of a Midlife GenX woman raising sons
ranging from pre-puberty to engaged.
I want my kids to call and check on me when I am old.
I want them to have friends that would come help them in the middle of the night.
And today's ways of noncommittal BS (even amongst us grown folk) have me worried.
What are we modeling for these kids?
One day at a time.
I need to shout
and push and pull and rip and tear
but I can't do that, so I just sit here
I need a time out
I'm on the verge of eruption and I can't let it out
because adults aren't allowed to throw tantrums or pout
So what do adults do?
We medicate or we shop
We gossip or we party or we eat or we stop
We stop what we are doing, we freeze, we lounge
And rarely does anyone look up to notice we are down 😔
Because just like us, the ones that love us are just going through the motions
They work, they spouse, they parent, but dare they notion?!?
See adults, we aren't allowed to get loud or show passion
We must color in the lines
We must shape, form, and fashion
Our lives and our minds and our hearts and our souls
into everything They want from us
into everything we were Sold
Someone somewhere sold us a dream
and we bought it, full stop
That life would be perfect
That the elusive shoe would never drop
But it drops and it dropped
and we watch it hit the floor
So I beg of you, dear ones
let's permit an Uproar
Let us process our disappointment, our envy, and our fears
Stop telling me I'm not allowed to be angry or shed tears
I'm a woman, yes a woman, and you might hear me roar
and I hope that doesn't push you away from my door
because the rest of my house is full of love and joy
and I'm getting too old to let you tell me to avoid
all my truths, all my days that I've walked in these shoes
so sit down on my couch, love... and appreciate these hues
I'm the most beautiful colors - if you'll open your eyes
Love is loud, love is mobile, can you handle my ride?
To every other human
that is tired of
sitting on their hands,
I see you.
It's 3 o'clock on a Sunday
with laundry caught up and dishes done
There's a wedding now to plan
and a full household to run
There are 2 in a hormone surge
well 3 counting me
We have been rushing for so long
that we don't know what "still" means
There are reels and shorts
that lazily pass the time
and make the tweens laugh
while the husband and I just sigh
See we are in The Middle
Not the Beginning or the End
We have pill organizers and good socks
but we still eye the newest trends
And we don't have grandbabies to rock
Not yet, hopefully one day we will
There are 2 still in the nest here
So we can't yet seek every thrill
We have jobs that we enjoy
and hobbies we hope to do one day
But on this Sunday away from the ballpark
we aren't sure what keeps the itching at bay
It's an itch we can't scratch
It's a question about life and loss
We are thankful for every moment we have
but those uncertainties still come across
So to all my friends who are also in the middle
Let us lean on one another
We are husbands, wives, friends, and family
We are more than just father and mother
One day at a time.
One milestone, one crisis, one joy at a time.
Let us hold tightly to each other in This Middle.
The End will come no matter how we spend our days.
Please consider supporting my fellow Hope*Writers by reading their work:
The Resurrection and What it Means for Believers by Lisa Granger
Finding Meaning in Life … and Death by Dianne Vielhuber
The New Stage of Grief: Finding Meaning in Hardship by Ashley Olivine
I have been packing for the beach for over 20 years now.
I certainly was not as pack-savvy my first 5-10 trips as I am now.
These are my BEST TIPS for beach packing if you are driving to the beach.
see list of supplies I keep year-round
in my cabin / beach box ⬆️⬆️⬆️
Beach Food / Condo List:
Beach clothes / other necessities list:
What goes in our cooler(s) for the ride to the beach:
What we buy once we are there:
I'm typing this from Orange Beach.
I hope you found these lists inclusive and helpful.
May all your beach trips be smooth sailing. 🏖
These are just a few of my favorites lately- I hope you enjoy!
For more of what I love, follow me on Instagram! I post to my stories daily.
It's summer. In Georgia. So it's HOT.
And one thing I'm learning about these long, hot days is that being inside in the cool AC with a fan whirring in the background and nature showing off outside my window gives me both energy and rest simultaneously.
Yes, the kids are out of school.
Yes, there are lots of "mom, I'm bored" whines followed almost immediately by "mom, I'm hungry."
But there is something about summer that makes us all kids again, isn't there?
We stay up later than we should.
We eat popcorn for dinner if we want to eat popcorn for dinner.
We "don't have any homework" and most of us "don't have practice" and a messy house is expected with kids out of school.
Pools call our names and floating counts as exercise.
Ice cream outings beckon us to sidewalks in small towns.
A live band on a starlit night with a warm breeze gives me enough wattage to survive this Georgia heat and sink into my sheets at night both tired and invigorated.
We talk to our neighbors more. The same ones we see all year walking their dogs.
But it's summer. And summer gives us permission to interact even in this lonely digital world.
Movies are cast on campers and garage doors.
Glow sticks compete with fireflies and fireworks happen a few times each summer- all over the world.
Smores become dessert and even church seems more fun in the summer.
God must be showing off a little more with these summer rules and nature's beauty on display.
Books are suddenly important to moms and sometimes even dads.
And not books for the kids, books for US. We suddenly want to read... by the pool, at the lake, on the beach.
Clothing is thinner and shorter so even laundry is less cruel and mundane.
Work is necessary for most of us, but even WORK in the summer is better.
Frankly we are all in a better mood.
So I ask you to sit for a minute or two and consider all the things you LOVE about summer.
There is so much going on in the world this June of 2022, that I chose to focus on any summer, all summers, just summer for my reflection post.
Life has been heavy, but I need light.
We head to the beach in a few weeks and my children's' excitement is like a drug.
They giggle and ramble on about all the things we will do and how fun it will be.
And I join in!
Because I was 10 years old one time, without a bank account or work deadline or relationship issue to worry about.
I was 10 years old. Out of school. Staying up late. And catching fireflies after I rode my bike and jumped in the pool with my friends.
Allow yourself to be 10 years old today.
The world needs that right now.
After writing School Colors as I processed the Uvalde tragedy, I kept feeling and seeing the word BRAVE creep into my mind and body.
As with any tragedy, loss, or wonkiness we endure, I think people turn to comedy for some type of comfort or relief.
Pandemic comedians, where you at? (yes I used improper grammar and I liked it)...
Anywho, I've had a lot of ICKY after this most recent school shooting, and I have found myself SCROLLING more than usual- I guess as a form of searching for both relief and answers. 😞
Upon scrolling, I saw a meme of the 80's mustachioed dad tossing his bewildered 7 year old into the pool as his form of "swim lessons." Ha ha- so funny- so true (established 1976 right here), keep scrolling. Still smiling as my right thumb hovered over my phone, I felt a small nudge.
Kids who are brave.
Parents who allow kids to BE BRAVE.
Now I'm NOT thinking or talking about Uvalde, but I'm thinking and talking about the kids I see and know. The ones in my house. The ones in my neighborhood. The ones on my son's team. The ones in my son's acting group. The ones in their classes. My cousins' kids. My friends' kids. MY KIDS.
Last night I watched my youngest son do something SO BRAVE. It took so much courage to do what he did.
After his brave act, I asked him how he felt. He had mixed emotions (because his efforts were great but not PERFECT) and he was exhausted. I explained to him that what I loved the most about his endeavor was the COURAGE he displayed to even attempt his feat. Good, bad, perfect, terrible, wonderful, awful, whatever... he DID IT! And he did not give up. And he did not waiver. He believed in himself and he followed through without the
2022 SAFETY NET of PARENTS and SOCIETY.
But friends, are we the NET we think we are for these children?
Are we catching them when they fall or are we blocking the ladder to get to the scary top?
Are we so worried about their potential failure (and heaven forbid it being captured on social media) that we are keeping them from even DREAMING or BELIEVING or TRYING to reach for the stars?
Are we modeling GOING FOR IT and TRYING NEW THINGS or are we waiting on the sidelines watching reels of strangers going for it? Did we "see it on TikTok" or did we actually try it ourselves?
Are we letting them FAIL or are we making sure they SUCCEED at all costs?
Are we celebrating the lessons learned or only the medals won?
So I challenge you, Moms and Dads, Aunts and Uncles, Grannies and Nannies and Pappaws... talk to the children in your life about COURAGE and BRAVERY. Discuss success and failure at the supper table.
On the way to the "brave feat" last night, that same son asked me if some celebrity was a millionaire. My response: "I'm sure he is, but that doesn't mean he's happy. Ask that celebrity what matters to him, what he stands for, who he has helped in his life - that's a better question."
Give your dear ones a little wiggle room to make mistakes.
Let them have an original thought and better yet, AN OPINION.
Encourage them when they are frustrated, but please do not fix it all for them.
Allow them to clean up their own messes.
If I have learned anything in the past few weeks, it is that my children and the children in this world are BRAVE SOULS, braver than we will ever imagine. Let us unlock their courage and model resiliency after "failure."
Put your phone down.
Talk to the kids in your life.
Ask them what courage means to them.
SHOW THEM how to be brave.
I am still not okay after what happened in Uvalde, Texas.
I am okay with not being okay.
This post is not meant to belittle those events in any way.
I'm watching my children as they move through this.
I'm learning from them how to be brave.
School colors like black and gold
Marching bands with trombones
Or school colors like yellow and black
Lines of school buses
Bring excited August students back
School colors like green and white
Chalkboard and chalk
Now Chromebooks and a mic
School colors like Crayola in a pack
All the colors of the rainbow
Glue sticks, play-doh, and papers stacked
School colors like pink and purple
Little girls' hair bows and backpacks
On their devices playing IXL & now Wordle
School colors like navy and grey
Quarterbacks and point guards
Breaking records, making their way
School colors like off-white and beige
Tile floors and cement walls
Janitors mopping, cafeteria workers wave
School colors like baby blue and white
Pep rallies and pom poms
It's homecoming tonight!
School colors like silver and black
TURN THE LIGHT OFF!!!! BE QUIET!!!!
HE'S GOT A GUN!!!! DON'T LOOK BACK!!!!
DON'T MOVE- JUST BREATHE
NO NOISE - WE NEED
TO STAY QUIET, SO QUIET
COUNT 1, 2, 3
DON'T CRY, IT'S OKAY
YOU WANT YOUR MOMMY
SWEETIE JUST STAY
VERY STILL, SO VERY STILL
I AM NOT SURE IF HE WILL
COME TO OUR ROOM
POW POW POW
SCREAM SCREAM SCREAM
NOW NOW NOW
IT'S SO FAST, SO VERY FAST
IT'S SO LOUD, SO VERY LOUD
yet so quiet
and so lonely
am I frightened
or just zoning
out or am I in?
is it over? did we win?
and school colors
for blood shed
for those who died
for the marks on our souls
don't look back
School Colors, School Colors
I don't trust you anymore.
I am hiding behind a bookshelf with America's children on the floor.
comes every May
and with it comes some pain
Pain for those who watch from afar
Pain for those who were never the star
and sometimes, a feeling unnamed
This feeling of reeling from dealing with life
and school and kids and daily strife
There's work and marriage and laundry and dishes
and unfulfilled goals, broken promises, forgotten wishes
And all of a sudden we are all 16 again
full of both awkwardness & confidence
with our acne and our hormones
watching the principal hold the microphone
And we wait for our names to be called
and the teacher didn't call it
they didn't pick me
Pick me or my kid? What's going on in my head?
Am I rejected for their rejection?
Is this about me instead?
Oh Honors Day, dread Honors Day
I love you when you call my name
I hate you when forget about me
Wasn't I good enough? Don't you see?
The joke is on us friends
for life is its own Honors Day
Your boss, your friend group
they always pick who they want to stay
We want to belong
we want to matter
to feel seen and heard
But what I have just realized
What I have finally learned
Is that I throw my own Honors Day
EVERY DAY for myself
for my kids, for my spouse
WE are the trophy, WE are the shelf
I won plenty of ribbons
and plaques and awards
But they're somewhere in a box
And now my family is my sword
to keep fighting this fight we call life every day
so when your lovely looks up to you disappointed from Honors Day
just tell them, no SHOW them, about the true trophies in life
Like kindness and empathy and perseverance. Hold that baby tight.
Look right in their eyes and tell them YOU are their shelf.
And no matter how good someone measures them to be, they are HELD.
Don't push your sweet lovelies to climb to the top.
Let them be who they will be. Let them stop if they need to stop.
comes every May
and with it comes some pain
just let it go on and do its thing.
Don't let it determine the gain.
Brought to you by a trophy-winning, plaque-possessing,
16 year old stuck in a midlife body.
Honors Day is just another day.
Your sweet babies are the TROPHY.
Please be a kind and loving SHELF.
Southland in the Springtime- that's a song by the Indigo Girls
in case you didn't know- check it out 🎶
Now I challenge you.
Think of what you love about spring.
Write it down or note it in your head.
And give thanks.
On our first day and our last day, we are all the same.
If you have a pet of any kind, you know the joy that pets bring into our lives. While they do come with a certain level of commitment and work, they offer benefits that far outweigh what they require of us.
Now that I am six years into my primary chronic illness, sarcoidosis, I feel like
I can discuss pet therapy with conviction.
Prior to becoming "sick," I always had a pet - from childhood on. It wasn't really until I became ill, however,
that I realized what my dogs had done for my mental health.
My physical health has also improved thanks to being a pet-owner.
Here are 10 ways owning a pet can help you with your chronic illness:
Charlie the Dachshund is always there for me. He will wait on me wherever I go and follow me no matter what.
He needs my help to get his food, water, and to let him outside.
It feels good to be needed by someone or something that doesn't really expect much in return,
ESPECIALLY with a chronic illness. I can be sick, tired, or both in front of him and not feel self-conscious.
I can tell him all my thoughts and fears, and he won't judge me. I can even moan out loud in pain or cry at
my medical misfortune and he doesn't flinch.
Instead, he meets me with loving kindness and is a steady force of calm in my daily life.
Friends, Family, and Coworkers can all form extremely close bonds.
Statistics show that we spend more hours at work with coworkers than with our own family members.
If we are lucky, we find certain individuals that vibe with us. We may share common interests or common talents. We may have a similar sense of humor or taste in music. It's kismet and it's beautiful when that happens.
But years pass. Life marches on and with that comes love, loss, and change.
Some of us grow and some of us remain stagnant. Some minds open and some minds close.
I'm sure you have felt it. You're having lunch with someone from one of those 3 groups (family, friend, or coworker), and you run out of things to say. Your common interests and similar values seem further apart. In the worst cases, this person sitting across from you is your spouse or partner.
Perhaps you are the one who is growing or perhaps you are the one stuck in your ways.
Invariably, one of you is going to be growing in a different direction than the other person.
Just because you grow in different directions doesn't mean you have to grow apart.
It can mean that, however, if you are not careful.
Having worked in healthcare for decades, I have learned how important it is to meet people where they are.
If you love someone, you can meet them where they are without expecting or pushing them to change.
My oldest, bestest friend once commented "it takes all kinds."
It wasn't a grand statement or momentous event when those words tumbled out of her mouth.
I must have said something judgy, and she course-corrected me.
How lovely would it be if we embraced each day and each relationship with that same framework?
I cannot recall the moment in which she said those words, but I have never forgotten them.
IT TAKES ALL KINDS.
How boring and monotonous would life be if we were all the same?
As polarized as our country has been of late, imagine us all agreeing on everything?
Where would the passion lie? What would spark change?
What would we learn?
So today, as I begin another day of onboarding for my new day job,
I sit with a smile on my face and love in my heart.
I have learned the most from those that challenged me.
I have grown the most being surrounded by those that questioned me.
I have loved the most by offering compassion and empathy
to those that may not even like me.
The next time you catch yourself thinking "we are just too different.
I've changed (or she's / he's changed)."
Pause. Take a deep breath.
Silently name all the reasons you loved them initially and why you still care for them today.
Who are you to say you are too different?
What can you learn from them?
What can they teach you about yourself?
It takes all kinds.
Have you ever been picked last for a team or a project?
Have you ever been sitting at the END of a table and no one really acknowledged your presence during the lively, laugh-out-loud dinner that everyone else seemed to be having?
Have you ever been cut off during a conversation when someone "cooler or prettier or funnier or more magnetic" stepped into the mix?
What if you vote a certain way but you're surrounded by others who vote differently? You want them to love you for you, but are you having to hide part of yourself in order to belong?
What if you have a different opinion but keep it to yourself in fear of others' reactions?
What if you don't even feel like you belong in your own home? Isn't home supposed to be your safe space?
So, again, I think we have all experienced this feeling.
Source: Brene Brown's Atlas of the Heart
Since we all know we can't control the thoughts or actions of others, let's focus on what WE can do the next time we feel this way.
Here are 10 ways you can (and I do these myself) try to reach the feeling of BELONGING again:
Now let us review. Somebody somewhere made you feel
left out, unwanted, or overlooked.
You start to list all the reasons you are just that: unwanted and overlooked.
Then you REMEMBER these tips to get back to belonging
and you pull at least one of them out.
Consider it a secret weapon. Use it.
Allow yourself to feel both ways - both the ickiness of unbelonging and
the comfort of true connection once you have found your way back.
Teach someone else you love how to do this the next time
they call you searching for validation.
And hey. Just so you know, I would pick you.
How are you?
Good, how are you?
Fine, today was busy.
Yeah, me too. Ready for some downtime. Did you go by the drugstore?
I did (even though he could have). Did you run the dishwasher?
I did (even though she could have). What's going on this weekend?
A Saturday-Sunday tournament and I really need to get some of my charts done. (He didn't ask if I wanted to do anything as a couple. I guess he doesn't care).
(She is always working- she never even mentioned anything I might want or need). Okay- sounds good.
We both have needs, but we are not making them known.
We both have resentment, but we speak like polite coworkers.
The conversations are transactional and not RELATIONAL.
We are co-parenting and room-mating - but where is the love?
Unfortunately, as the years passed and the kids got older, we seemed to have fewer transactional conversations.
Homework wasn't AS MUCH of a chore. Snacks were often handled by the kids independently.
Routines were established and roles were pretty defined (though unspoken) in the home.
In ways, this meant less bickering and smoother mornings and evenings, but were we connected?
OR were we just 2 lonely adults passing in the hallway - each longing for a real connection but not knowing where to start?
We have both been married before, so we both know the pain of divorce. We vowed to make this marriage work, but was it working? Was it tolerable or was it phenomenal?
I have been going to THE BEST counselor on the planet for about 18 months now, and I asked her for a few suggestions. Regardless of each person's love language, she made clear that time and non-sexual touch are both very necessary for meaningful connection. Since I work days and my husband works nights, we don't have a TON of time together - and very rarely is it without children. We both commute so that takes away even more of our precious time. The kids are busy year-round it seems, so where was I supposed to carve out both TIME and TOUCH?
I decided that we needed ONE HOUR per day to talk, sit close to each other, and just be together. I named it the POWER HOUR and I told the kids this was Mom and Dad's time together and it should not be interrupted unless there is an emergency. They heard "screen time" and were all for it. I decided kids' screen time is worth the investment in our marriage.
I claimed 7-8 pm to be our ONE HOUR per day to sit on the couch together - touching!- to watch TV, chat, whatever. I am not gonna lie, 9 times out of 10 my feet and legs are in his lap and he's using my massage gun on my calves while I scratch his non-massage-gun-holding arm and hand. He likes scratches, I like massages. The point is, though, that we are touching and there is no pressure surrounding the touch. All adults everywhere know what I mean by that.
He has to leave for work by 8 pm, so once he leaves I call the kids back into the living room and we finish out our family time before bed. If he's off that night then we may continue past 8 pm. The rules are simple: he needs to be showered and ready for work by 7 not 8 so I can have that hour with him. I need to ignore work and personal messages during that precious hour so that I can give him my undivided attention. Sometimes there is a late practice or rehearsal and our POWER HOUR is skipped or delayed, but it is a daily priority now. We both look forward to that time together, and the kids are still alive.
It is so much easier to hash out a BIG issue when you are sitting next to your spouse touching them instead of over the phone or (worse) text. If you are both relaxed and physically touching each other, it is harder to become defensive or to go into attack mode. A quick squeeze of the arm or hand can reassure your partner that you are, in fact, on the same team. Close eye contact can remind your spouse that you love them and that you each have the same end goals.
You may read this and be thanking the heavens that you've never felt disconnected from your spouse. Having worked with married patients for years, I would venture to guess you'd be in the minority. I know most of us have felt like our marriages have become mundane or on auto-pilot at various times. It doesn't necessarily take a marriage retreat or some crazy new "trick" to get your marriage back on track. For us, it just took a shared couch, one hour per day, and our hands. It took putting the phone down. It took managing our time to preserve that one hour per day. It took biting our tongues when we wanted to be snappy and waiting until we were together to have that hard conversation.
My life isn't perfect nor is my marriage. My house isn't perfect.
My kids are not perfect. I am far from perfect.
But, I am trying. He is trying. We are trying.
Effort is attractive and kindness matters.
Just like a plant first emerges from the soil,
I feel that burst of energy after my labor and my toil
I have prepared this new beginning that was written in the stars.
Will I miss my sweet darlings? Will they always be in my heart?
Of course they will for that is who God made me to be.
A person who loves and stays committed to thee. ❤️
But I am so very excited to plant new seeds.
To bear new crop, to have more reach.
Will I miss my old garden and all my farming friends?
Of course, but this is just a new plot of land.
Some bare acres await me and all my ideas.
How exciting to lead, to lift others, to calm fears.
The doubters might think "yeah she is in for a treat."
But the treat is in the soil, the gardeners, and the seeds. 🌱
I am not the treat.
I am simply the sun, ☀️
the rain, and one of the tools to help the garden run.
I am not all of that of course.
I am no fool to this game.
But to be on the team and be invited to play! 🥳
Is the best feeling in the world to be appreciated, to feel heard.
The anticipation explodes inside me.
No longer a noun, I can be a verb!
Some tears will be shed over the last garden I built.
I will see you all again.
This flower just had to leave before she wilt. 🌸
The following post is one mom's experience with autism. One family's experience. This author and I
both understand that autism exists on a spectrum and this is just one example of the spectrum.
What do I want you to know about autism? Since I am neuro-typical, I can only give you a mother’s perspective. So, last night, I asked my 15-year-old with autism what they want people to understand about autism. After a moment’s thought, they had two things to tell others.
First, in their typical blunt manner, C said, “Autism is a spectrum, it doesn’t always look like a little 6-year-old boy who can’t control himself.”
I thought this was a great point. Our autism story isn’t typical. My kid, born in a female body, wasn’t diagnosed until last year, when they were 14. (For the purposes of this post, I’m using gender neutral pronouns and the letter C for their name.) They’ve struggled with a number of things for years: reading was hard, paying attention in school was a disaster, building and maintaining relationships with “normal” peers was super challenging. The autism diagnosis was a sigh of relief for all of us. Finally, we had a name that encompassed a wide variety of things: social skills that were getting harder to manage in middle school, sensory issues that seemed to becoming more intense, and a hyper-fixation on a growing, rotating range of topics. Autism was not a negative diagnosis for us. It was an answer and in it, I found hope.
It took years for me to start thinking about autism for my kid. To me, autism looked like one of two things: it was either the young boy whose autism made them unpredictable, a person with special needs, or it was the savant, again a boy, who could tell you everything you needed to know about his particular fascination. In fact, it was C who came to me and said, “Mom, I think I have autism.” In the next breath and typical fashion, “I’ve been doing some research.”
My sweet kid, from the moment they were born, was never typical. They were happy and silly and the third born. They could be laughing one minute and asleep on your lap the next. C was cuddly and tender one moment, but at the next moment, trying some stunt that would make a mom’s heart stutter with nerves. They could listen to me read to them for long hours or play a silly made up game all afternoon, but could never concentrate long enough to finish math problems.
We got an ADHD diagnosis when C was quite young. (That’s another thing C would want you to know: often Autism is misdiagnosed in females as ADHD because Autism presents differently in girls and practitioners don’t think females have autism.) And in that moment, an ADHD diagnosis was a tool—it gave our family a framework for understanding that our kid’s brain worked differently. We could accommodate their learning and home life to best suit their needs. C is smart, funny, talented, creative, and silly. Their diagnosis forced me, as a mom, to reframe the negative lens through which this is seen. I wasn’t going to let them think their ADHD was an affliction. Instead, ADHD was their superpower—they saw the world differently than I did. It’s just that the world isn’t really made for kids whose brains aren’t like everyone else’s.
Everything fell apart in Middle School. Well, Middle school and a pandemic and online learning and adolescence. It was the perfect storm of horrible-ness. It has been a rocky couple of years for my kid (and me) as we’ve discovered the autism diagnosis and struggled mightily with mental health. (One more thing C would say, because they think of things at random times unrelated to anything else, is that because autism is diagnosed so late in girls, most girls with autism struggle with depression, anxiety and a sense of “who am I?” and “why can’t I be like everyone else?” An earlier diagnosis could help relieve some of that angst.)
This is the first time I’ve ever put this story down in words. It feels rather momentous to do so. Yet, when I tell people in my orbit that C has autism, some are surprised, but for most, who know us, it just rolls off their back. “Huh,” they say and move on to something else. Because for them, as well as us, it’s just a way to define the way my kid is, the way they move and think and interact with the world. And someday, this culture will understand what a gift a brain like that is. I am convinced that someday C is going to change the world.
Oh, and C wants everyone to know something else about autism: “Mom, make sure you say that moms who have kids with autism aren’t superheroes. They’re just moms. Like you.”
C makes me laugh so hard I can’t breathe. They will share their saved memes with me for 30 minutes just to get some parental attention and then later lock themselves in their room and not want to talk to anyone. They challenge the way I think and expand my view of what success looks like in the world and teach me a gazillion things I never thought I would have to know.
While I wish the world was an easier place for my sweet one, I would never, in a million years, change this part of who they are.
And that is what I want you to know about autism.
Sammy Beuker is a wife, mom, Youth Worker, friend, and writer who lives in Grand Rapids, Michigan. When she isn’t
managing her complicated family life, she works with teenagers at her local church. You can find her and her newsletter at sammybeuker.com where you can follow along on her journey to publication or on IG @sammyanne_b
where she posts about her life, writing, books, food, family, faith and her golden retriever, Monty.
Thank you Sammy (and C!!!) for sharing your words with my readers.
Thank you for having the courage to tell your story.
This touched me! ❤️
-Amy at Taylored Intent
If you are a mother, you know the feeling. You're at work instead of field day.
You're at one child's band
performance while the other child has an academic bowl meet.
You missed that baseball practice
out of sheer exhaustion and that's the one where he hit it over the fence.
"Mom, can you pick me up car rider? Can you check me out early
like all my friends? When are you going to be off work again?
Mom, why are you on your laptop so much?
Mom, are you listening?"
Some of those innocent but real questions can cut me like a knife,
leaving me gutted and riddled with GUILT.
Mom Guilt. It's a thing.
And I think we should talk about it.
AND we certainly do not help ourselves as a gender or a community. Not only do our KIDS make us feel guilty, our fellow moms can inadvertently or purposefully trigger shame and guilt at any given moment. Pam made homemade Christmas cookies for the entire class while we can barely pack lunches each day. Trisha made Halloween goodie bags with a punny handmade tag using her Cricut. Allison sewed personalized pencil pouches for the
entire third grade while we are struggling to sign each kid's agenda every night.
Then there's social media. Be sure to only buy non-GMO Organic foods. Is your car seat in the top 3 for safety?
How often is your child brushing their teeth? Gluten is the devil. ADHD is real - oh wait, no it's not -
you're just a lazy parent. Discipline your kids. Don't discipline them, let them find their own way.
All babies should cry it out. Babies who cry it out have attachment issues and end up
in therapy before age 30. Limit that screen time.
Make sure they play outside, but you must watch them outside
AND still get all your paid-work done and maintain a spotless house with home-cooked meals.
Cloth diapers. Breastfeeding. Well, if you work then store-bought baby food might be okay-
but only if you work now. And don't forget to recycle.
Make it stop.
When my boys were 2, 4, and 12, I walked into my CEO's office and said "I quit. Other women are raising my children and I quit." I didn't have another job lined up. Fortunately, I had some savings, but that was mainly because I was working SO HARD and barely had my head above water that I never had time to shop or vacation (ie spend money). I was justifying myself to a man (my CEO) whose wife did not work and I "knew" he was coming home to beautifully home-cooked meals, a clean house, freshly washed and ironed clothes, and a wife who probably still had energy for sex instead of one who was collapsing into bed every night. OR SO I THOUGHT.
He kindly and calmly asked me to take a deep breath, sit down, and reconsider. What about part time or PRN (the medical term for as needed)? Did I want to lose my 6-7 years of tenure with the company? Did I always want to stay home or did I just need a break? Did I still enjoy being a nurse practitioner?
The truth was, I did not know the answers to his questions. I had ZERO plans, which goes against my basic core (search "plan" on this blog and you'll quickly see I plan everything). I had not asked myself if I enjoyed my work because I barely knew what day it was. I felt pulled in every direction by every person in my life and I was dreaming of ways to "get off the treadmill." My husband's lawn business was booming, and I was quickly running out of bandwidth to help him with that as well as my other demands at home and work. I felt like I was choking, but I wasn't sure WHAT was choking me the most. I just knew in my SOUL that I had to make a change.
I prayed about it. I took a few days to write it all out - not my feelings - I had not found a therapist yet. 👀 Who had time for therapy? BUT, I did somehow remember some of my high school and college skills for decision making and scribbled down ALL the reasons that quitting my job would make me happier overnight. In the end, I heeded my younger-than-me CEO's advice and worked PRN the first year and part-time the second year before returning full-time when my youngest started pre-K. Since I am not independently wealthy, I did eventually have to bring home some more bacon.
So, then what happened? Was my life immediately better once I was home more?
Did the MOM GUILT end over night?
Was I making beautifully home-cooked meals, providing freshly washed and ironed clothes,
maintaining a perfectly clean house, and bursting with energy for sex every night
since I no longer "worked" every day?
Turns out, the joke was on me. Not really a joke though my friends. It's the truth.
My 4 year old was in Pre-K, but my 2 year old was suddenly out of daycare.
My 12 year old was in honors classes in middle school and I found myself juggling
potty training, phonics, and puberty. 3 P's that should never go together. 😜
I was waking almost as early as I had been when I commuted to my demanding NP job.
I was feeding kids, washing clothes, and picking up toys all day it seemed.
I was helping with homework instead of paying my babysitter to do that.
I was making brownies for the PTO instead of money for retirement.
I was just as tired, but it was more of a physical tired than a mental exhaustion.
I was able to go to the gym regularly, and THAT was amazing.
Our gym had childcare, so I would tell the boys if they wanted a
"nice mommy and not a mean mommy"
then we would be going to the gym, thank you very much.
I DID have more downtime. I laughed regularly. For the first time in YEARS.
I WAS able to take and pickup my kids from school.
I had never before and never since had that luxury.
The pure joy of seeing my boys' faces when I picked them up each day
was worth the frequent melt-downs when I had to wake the 2 year old
to go pick up the 4 year old. (How do we do these things and no one discusses it?)
I learned lyrics to Disney movies instead of new treatment guidelines for diabetes.
I never took the kids to school in my pajamas, but I suddenly realized why so many women did.
I dropped ALL judgment of other mothers, because I was IN THE TRENCHES.
I missed adult conversation. I missed feeling important- there - I said it.
I lost my temper, and I raised my voice on occasion.
Sadly... and this really does make me sad... I simply had not been around
my babies enough HOURS of the day to really, really lose my patience with them.
Not until I was home. Cutting coupons. Cutting Play-doh with tiny plastic scissors.
And realizing that THIS was the real work. THIS was the important work.
And so I sit here tonight with tears in my eyes.
One launched and doing well.
One in middle school with puberty and insecurity competing for his time.
One who still lets me hug him in front of his friends.
And I don't know much more than I did 8 years ago when I walked in my boss's office overwhelmed and undone.
I'm still in awe of and in love with those 3 beautiful minds and faces that call me Mom.
But guilt? Will I wallow in guilt when I reflect over my presence in their lives?
Maybe on a bad day. Maybe for a minute or two when I have a "mom fail."
BUT I BEG OF YOU. OF ALL OF US. TO MAKE IT STOP.
WE ARE WARRIORS IN OUR OWN RIGHT.
WE KISS THE BOO-BOOS AND SCARE AWAY THE MONSTERS.
WE QUIZ THE SIGHT WORDS AND TIE THE LACES.
WE FEED THEM SOMETHING SEVERAL TIMES A DAY, AND WE ENSURE THEY ARE CLOTHED.
WE ARE DOING THE BEST WE CAN.
WE ARE FLAWED BUT PHENOMENAL.
WE ARE IMPERFECT BUT IRREPLACEABLE.
WE ARE MOTHERS.
LET US UNITE AND HOLD SPACE FOR ONE ANOTHER.
There is nothing worse than having a fight or flight response. It can last for hours once the adrenaline and cortisol dump into the bloodstream. It is bad enough when you have that response and you know what caused it, but imagine having that response without knowing what caused it. That can feel defeating and depleting.
Since I have had too many panic attacks to count over the years, I have started to identify ways and places I feel safe. If I am able to get to one of these places, I can sometimes head off a panic attack or restore a calm mood. I hope you can start to identify your safe places and safe activities.
For ME, my top 7 are:
I created a Power Hour with my husband 1-2 years ago. This hour from 7-8 pm is sacred and did not happen until at least 10 years into my marriage. There were lots of reasons we were not connecting regularly, but one of them was some strained family dynamics. I created this time and location so that we could start to connect regularly and so that other family members would respect that time we both needed so desperately.
Naming what you need is so important. Deciding what will happen and when it will happen is
paramount for consistency and expectations in a relationship.
As I have said many times, I am not a licensed therapist.
When I found my AMAZING current therapist, one of the very first things she
guided me to ask myself regularly was "do I feel safe?".
I barely had time to stretch for 5 minutes a day, so how was I going to remember
to ask myself if I feel safe? What in the world was she talking about?
I soon realized that the simple, brief, piercing question "do I feel safe?"
would become a huge turning point for healing in my life.
Do I feel safe in this friendship?
Do I feel safe in this marriage?
Do I feel safe at work?
Do I feel safe with just me, myself, and I?
And if I don't feel safe, can I ask those that love me for what I need?
Are there some strategies we could implement that would help me to feel safe?
Do I need to close spend more time with those people and in those places
that help me feel safe? Will that help me navigate the unavoidable
situations where I do not feel safe?
And most importantly, if I start to feel unsafe (which can sometimes lead
to a panic attack), HOW can I get back to safety both
mentally and physically? She freed up my LIFE when she explained
that I don't have to "fix" whatever is making me feel unsafe.
I just have to learn how to regulate my own body and get
back to a place of calm and centeredness.
Wow. Mic Drop.
I don't have to fix it!
I can't fix it!
This is one of those posts I encourage you to read a few times and perhaps grab
a pen and paper. Jot down the places and people who make you feel icky.
Write down the people and places that make you feel GOOD.
And try to stop focusing on fixing the first list. You can't fix it.
Focus on spending more time in and around the second list.
And find your seven ways and places to feel safe.
In 2016, at the age of 40, I received a sarcoidosis diagnosis that rocked my entire world. My kids were 4, 6, and 14 at the time. I was at the pinnacle of my NP career, and I was coming off a 2 year "break" from full-time work. From 2014-2016 I was working 2 or 3 days a week and was able to spend more time with my family. I was also able to go to the gym regularly and prepare healthy meals. I felt like my health was also better than it had been in the past 7 years.
My sarcoidosis symptoms started abruptly in September and were very noticeable. I would walk to my car that was parked on a hill after work and be extremely short of breath (think huffing and puffing as if I had just sprinted 100 yards). I would go to the gym and feel completely wiped out after 20 minutes of my workout when normally my full hour workout left me energized and not depleted. I would walk out of an exam room and forget the name of a medication or stop mid-sentence when trying to give my nurse a verbal order. I also felt very dizzy and lightheaded and was not sure what was causing all of my symptoms.
I decided to go see my colleagues in cardiology once I realized my blood pressure was dropping. My blood pressure was dropping as low as 80s/50s. I was also having numbness and tingling in both arms and hands and my hands were turning blue. I thought there had to be some type of blockage or blood flow issue. Ultrasound evaluation of my carotid arteries and upper extremities were normal. EKG, basic labs, and chest x-ray were normal. My echocardiogram (heart ultrasound) was the first test that came back abnormal. It showed an elevated pressure reading between my heart and lungs (pulmonary hypertension). My providers were not really sure what would be causing that because I was "so healthy."
I plugged along from early September to late September before seeking a second opinion. My symptoms were progressing and persistent, and I knew something was not right with my body. My fatigue was worsening to the point I would count down the hours until I could get into bed. My shortness of breath was limiting my daily activities and I was beginning to cough every time I ate or talked for more than a few minutes. I also had an episode while driving where the left side of my face went numb and my breathing became very shallow and irregular. That sent me straight to my second opinion! That second provider ordered a chest CT and a brain MRI which were performed on a Thursday morning.
That following Monday in early October, I was at work for a 12-hour day. I received a phone call mid-morning from a nurse in my second opinion provider's office. The nurse said "you have brain lesions and you need to see a neurologist to rule out MS (multiple sclerosis). You also have enlarged lymph nodes throughout your chest and you need to see an oncologist to rule out lymphoma." As you can imagine, I was in shock and called my manager to tell her I needed to leave for the day and to go speak to my husband and my parents. Did I mention my youngest child was 4 years old?
Fast forward to a bronchoscopy mid-October with lymph node and lung needle biopsy as well as a trip to a neurologist which resulted in EEG and extensive lab testing. My neurologist ordered more MRIs and tried to ease my fears of MS (though he could not totally rule MS out). My pulmonologist was unable to get a conclusive diagnosis from the bronchoscopy and recommended a mediastinoscopy which would involve drilling through my sternum (breastbone) to remove lymph node tissue for biopsy. I told him that I felt a large lymph node above my left clavicle and we opted to have that node excised for pathology instead of the mediastinoscopy.
That left supraclavicular node excision was done the last week in November under general anesthesia at the hospital since it was so close to my carotid artery and jugular vein. That node biopsy was negative for lymphoma and positive for non-caseating granulomas (the definitive diagnosis for sarcoidosis). I was started on 60 mg of Prednisone per day that would be tapered over 6-12 months and referred to a rheumatologist.
After starting high dose Prednisone in December of 2016, I was placed on weekly Methotrexate injections which (who knew at the time?) would last another 4 years. The only reason I stopped Methotrexate is because I later developed psoriasis (for that story, click here). I was finally able to wean off prednisone late May 2017 though the side effects lingered at least another 6 months. I plan to write an entire post on surviving long-term prednisone, but I will leave it at that for now.
2017 seemed somewhat stable throughout the end of that year, but the next 3-4 years had their own hiccups. Over those next 3-4 years I found out that the sarcoidosis was affecting my esophagus. 3 EGDs in 6 months and tons of other GI testing led to the conclusion that my esophagus has no peristalsis ("squeeze'). The only thing helping my food reach my stomach is gravity. This makes eating challenging, especially talking while eating (cough, choke). I also found out I had sarcoidosis spleen lesions, ocular involvement, and another fun lung condition called bronchiectasis. For the esophageal involvement, I take 2 pills per day for life. For the bronchiectasis, I take one pill twice a day for life. See how I organize my meds here.
I have also been tested and monitored for small fiber neuropathy. The MS surveillance continues. My neuropathy is currently of unknown etiology, but my neurologist does think sarcoid plays a role. I was also sent to endocrinology at one point to check for adrenal insufficiency after steroids since my blood sugar and blood pressure still bottom out at times. Another hiccup involved an overnight hospital stay and a kidney biopsy (ouch by the way) after I noticed my urine was foamy like dishwashing liquid (that is abnormal and a sign of protein in your urine- tell your provider if you ever see this). I'm on another daily pill to help protect my kidneys for that confirmed renal sarcoidosis.
Every year I see a rheumatologist, general cardiologist, pulmonary hypertension cardiologist, pulmonologist, gastroenterologist, neurologist, ophthalmologist, dermatologist, nephrologist, and my PCP and Gyn. I now see a counselor regularly to help me process all that I juggle. I have mandatory quarterly labs, an annual heart ultrasound, CT's and MRI's every year, breathing tests every year, and whatever else comes up. Gone are the days of a routine wellness visit or not meeting my deductible. Gone are the days of only taking a multivitamin. I sleep with oxygen mainly for the pulmonary hypertension, and I'm okay with that. It was my little secret until now.
Right now, my sarcoidosis seems fairly well-controlled with Humira. When I met my rheumatologist in 2016, he told me he hoped he could get me into remission within 2 years. That was 5 and a half years ago. I haven't given up hope and I will continue to fight this fight as long as I can.💜
Below, I have included two great visual aids to raise awareness for our family and friends. The mental health effects of sarcoidosis are widespread and often overlooked by our clinicians. Sometimes just "being there" is all we need from our loved ones. 💜
I hope this post has raised your awareness of sarcoidosis whether you are a patient, loved one, or healthcare professional. As I told a friend after she learned of my chronic illness, "My entire life changed after being
diagnosed with sarcoidosis, but I didn't stop living." I hope this offers hope to anyone who is
newly diagnosed or any sarcoidosis patient struggling right now. I see you. 💜