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As of today, I have read 64 books in 2023. That is more than I have read in the past 3 years COMBINED (thanks to my new job and some life changes). While I have given over 20 five-star ratings and reviews, there are 10 books that are still following me around and dancing in my soul. I think about the characters or the story or the emotions they evoked and THAT is why I love to read. These 10 books have all taken up residence in my heart for 2023:
If you want to feel sad or reflective:
I hope these recommendations have come to you at the exact time you needed them. Please comment below if you have read any of these! I also review books regularly on TikTok and would love to connect with you there!
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When I was working in primary care, anxiety and depression were common diagnoses that patients were trying to manage, often by themselves. Patients didn't usually present with "depression" or "anxiety" but instead would come in complaining of fatigue, insomnia, lethargy, mood swings, weight changes, crying spells, palpitations, anger outbursts, or feelings of hopelessness or overwhelm. Knowing that anxiety and depression often present as behaviors, how can we support our loved ones who are facing mental health challenges?
How can we protect our own mental health while doing so? There are several steps we can take to support our loved ones while also protecting our own mental health. Using the mnemonic PARTICIPATE, let's learn more about what we can do.
I hope these concrete strategies allow you to feel more empowered when you engage with your friends and family members who are struggling with mental health issues. Perhaps you are the person who is struggling, and you can share this article with your loved ones. We simply do not know what we do not know. Effort and positive intentions are the beginning to valuable support. Godspeed. Bicycle lights, bicycle lights Riding with friends from the neighborhood after dark With the crisp spring air and the sounds of the night Getting that last lap in before bedtime My boys have those lights on their scooters and bikes And I wish they were around in my day But I recognize that feeling they give anyway It's a feeling we have all felt A Swagger; a JuJu A pep in our step and a smile from the rearview Remember being a kid? No worries, no stress No finances or relationships that need to be addressed I wish we, as adults, spent more time having fun and left more cleaning to wait more dishes undone If we all had bicycle lights and the feeling they give us We would dance more in the kitchen We would not be so serious We would tell those around us that we love them and that we need them We would sing and act silly Do you remember that freedom? Bicycle lights, bicycle lights Can I borrow you for a while? I need an hour of smiles and giggles I need the energy of a child I want the confidence of youth I ache for the ease of those years The innocence, the imagination Before all these doubts, hurts, and fears Let's go play in the neighborhood Until the street lights come on Let's soar on our bikes down a hill And remember where we came from On a recent poll with my readers, the results were not surprising:
The poll was not anonymous, and I know many of my readers. Several of the "way too much" respondents are married, have children, have jobs, are surrounded by people all the time, and YET... they feel alone. I can relate. Loneliness is harmful to your health. But how do we fix it? We've never been more "connected" in our lives? Or have we? I have found 10 ways to feel more connected in a digital world. These are not from some article or YouTube video. These are just what has worked for ME. I hope they work for you too:
I love interacting with my readers. For more of an inside look into my days, you can follow me on TikTok, Instagram, or Facebook. Please support my other hope*writers by reading their works based on the prompt word LONELY: Is God Lonely for You? By Sharla Hallett https://sharlahallett.com/is-god-lonely-for-you/ Loved vs. Lonely by Lisa Crowder https://lisacrowder.substack.com/p/5c456855-76dc-499f-90cd-6ffef071a3d3 Simple Is Better Lent - When Lonely is OK by Dianne Vielhuber https://simplewordsoffaith.com/2023/03/01/simple-is-better-lent-when-lonely-is-ok/ Open Letter to the Lonely Mom by Ashley Olivine https://www.ashleyolivine.com/lonely-mom/ Breaking the Stigma: Understanding and Talking About Loneliness by MelAnn https://lifesouvenirs.net/p/breaking-the-stigma Hijacked. Triggered. On Alert. On Edge. Uneasy. Icky. These are all words that describe how I feel when I am leaving my body as a result to some stimulus. And while I hate that my body has a physical response to certain triggers, my therapist has helped me realize that my body is doing its job. It is trying to keep me safe. It is sounding an alarm, and that is a good thing in the end. Whether you have been to therapy or not, you may recognize similar feelings and wonder how you can get back into your body and out of that fight, flight, or freeze response. Below I have listed some concrete ways to do so: 5 ways to get back into your body:
I hope these techniques have given you some concrete tools you can readily adapt the next time you are feeling a fight, flight, or freeze response. They have certainly helped me get back into my body. May you find more peace and belonging through my words. Please know that you are not alone. Godspeed.
Have you ever put yourself into timeout as an adult? Either your behavior was less than stellar or your attitude needed an adjustment? You were snapping at the kids for no reason, huffy with your spouse, or just spewing frustration with each breath? If you were your parent, you would have probably sent you to your room to cool off. I have learned to do that for myself. I even announce it. "Guys, mommy needs a time out. I will be back in 5 minutes. Please allow me those 5 minutes to myself." I hope this is modeling to my boys that even adults have meltdowns and need a moment. Let's talk about how to take an adult time-out and what to do during your adult time-out. How to take an adult time-out:
What an adult time-out may look like:
I was talking to a close friend the other day about the parenting we received as GenX kids. I was comparing it to the parenting I try to dole out and joked "man, I hope I'm not messing my kids up." We proceeded to have a lengthy conversation in which we semi-concluded that our generation is all in therapy because emotions were not allowed or acknowledged. We had to figure it out on our own while our kids' generation seems to start going to therapy in middle school. All or nothing? Where is the balance? This isn't funny and it isn't lost on me. At some point, I do just want my kids to be kids. On the other hand, I want them to learn how to process their emotions instead of shoving their feelings inside. If anyone knows the answer to this, let me know!!! 😜 In the end, I think we are all doing the best we can with the time, energy, and knowledge we have. Just remember... adults can take a time-out too. I highly encourage it. Godspeed. I love interacting with my readers. If you try taking a time-out, I would love to hear the results! For more of an inside look into my days, you can follow me on TikTok, Instagram, or Facebook. Please support my other hope*writers by reading their works using the prompt word PAUSE: Pause in His Presence by Sharla Hallett https://sharlahallett.com/pause-in-his-presence/ Power of the Pause by Ashley Olivine https://www.ashleyolivine.com/power-of-the-pause/ Don’t Stress, Pause and Refresh Regina Marcazzo-Skarka https://wordpress.com/post/reginamarcazzoskarka.com/147 When Hitting Pause is What We Need by Dianne Vielhuber https://simplewordsoffaith.com/2023/02/01/letting-your-doing-and-being-collide/ The Pause that Creates by MelAnn https://lifesouvenirs.net/p/the-pause-that-creates I'm listening to Jodi Picoult and Jennifer Finney Boylan's "Mad Honey" and I have already had to pause the audio to record some quotes in the notes section of my phone. I do this with my favorite novels, and this one will stick with me for a while I am sure. Lily states, "It's inconceivable if you think about it. The complex ways people have come up with for being horrible to one another." And she is right. I'm reminded almost weekly as I parent tween children just how mean human beings can be and how easy it is for unkindness to spread. It can be quite contagious, and fighting it can be quite tricky. One of the famous quotes I try to implement into my daily life comes from United States radio host Bernard Meltzer. Bernard's words are: “Before you speak ask yourself if what you are going to say is true, is kind, is necessary, is helpful. If the answer is no, maybe what you are about to say should be left unsaid.”
I also remind myself that Hurt People Hurt People. Dear Therapist has helped me envision an angry or venomous adult's wounded inner child, but that still doesn't make their words or behavior any easier to swallow. So I go back to what I can control: my thoughts, my environment (somewhat), the people I choose to spend time with, how I treat others, my behavior, my attitude, my choices, and my boundaries. Today's post was just a quick reminder to Be Kind and that Kindness Matters. We never know the difference one smile can make in another person's life. Godspeed. I had no idea what body armoring was until I met my current therapist. I had been doing it FOR YEARS, but I would just call it "stress" or "tension." Once she named it for me, it made total sense. I was putting on a suit of armor to protect against emotional warfare. If you are reading this post, you have probably been doing this for years yourself. You are not alone, and you CAN get that armor off, my friend. It just takes TIME and WORK, and in my experience, some really good therapy. This post is an intentionally short post just to introduce you to the topic and allow you some time and space to research further. I am not a licensed therapist, so I tread lightly on giving mental health advice, BUT I do want to spread information that has helped me and may also help you. Godspeed. Laundry. Dishes. Kids' practices and rehearsals. Groceries. Oh, and don't forget the HOA. Where is the romance, right? Forget romance, where is the deeper connection? When is the last time he asked me about my dreams or my fears? Umm, when is the last time I asked him about anything other than a scheduling conflict or a honey-do checklist. When is the last time we touched each other out of sheer desire and not some scheduled meeting of 2 busy adults? When is the last time we laughed or cried together? Am I the only one who feels alone more than I ever thought I would as a married person? Truth is, NO. I am not alone in feeling alone! I know this based on the countless conversations I have had with my patients over the years. Marital disconnection literally sends people into their primary care provider's office with symptoms of depression, fatigue, anxiety, and sometimes even physical symptoms (nausea, rapid heart rate, the list goes on). You know how our kids nag us on weekends "mom, mom, mom- watch me do this. Look at this. I want to show you this." Well, the truth is that we want the same thing from our spouse and they want it from us. We just don't know how to express that need. So we pout. We give the silent treatment. We build an invisible wall to avoid rejection. And it is killing us. So How DO We Fix It? One exercise my husband and I use is the FANOS method for couples communication. It only takes a few minutes each day and it has been paramount in improving our daily conversations and overall understanding of each other. The way it works is that one partner goes through their FANOS while the other listens and does not comment. No fixing or feedback. Just active listening. Then it's the other partner's turn. There is a 24 hour rule on comments. Very important to honor the 24 hour rule. The acronym is as follows:
Feelings: use an emotion word and tell your partner how you are feeling. Give a brief synopsis as to why you are feeling that way. Acknowledgements: use this time to thank your partner for something he or she has done or is doing. This can be something you appreciate about them or an actual task. Needs: Let your partner know something you need from them. THIS ONE is the one the other partner often wants to give feedback on or fix, BUT no commentary for 24 hours. Ownership: Use this time to admit your screwups. Take ownership for that snarky comment or huffy attitude. This one has been so good for us! Struggles / sobriety: Let your partner know about something you are working on either for yourself or in the relationship. This is so good for accountability and vulnerability in the relationship. Quick caveat: the Needs section is the stickiest one for us. We have found that we don't want to list the same need over and over and make the other partner feel inadequate, so sometimes we list a need outside of the relationship. That may not be the proper way to FANOS, but it has worked for us and kept some pressure off. I hope this technique gives you a starting point for your relationship to head towards communication and understanding. Feeling seen and heard is imperative for a relationship's success. Not every day is going to be perfect. There WILL be bumps in the road. But having a partner that you trust to show up for you and at least TRY to hold space for you as you process difficult emotions is what matters most. Godspeed. Note the leaves clinging to the window. Thank God for slower days that allow me to notice and pay attention. Those leaves inspired this post. When I think about all the concepts and ideas I have clung to for my 46 years, I feel muddled inside. Everything happens for a reason. I don’t know about that. Some days I see God and the universe working and others I don’t. I’m just being honest here. Hurt people hurt people. I do believe this one. ☝️ But how do I maintain my self-worth and boundaries while being in the presence of those who don’t know how to get out of their own misery? This one is tough and affects most of us on a regular basis. True love. Soulmates. The jury is still out for me. People treat you how you teach them to treat you. I’m 50/50 on this one. I can hold my boundaries and even lower my expectations when needed and some folks will still be jerks. See #2 above. It will all work out. I’m 80/20 on this one. Yes the sun WILL rise tomorrow. Yes the world WILL keep spinning. I have (mostly) grown from all my life experiences, but I’m not sure if it always works out. I see injustice. I see inequality. I am not sure that always works out. Take the high road. I don’t know. Sometimes change needs a low road as a catalyst. Maybe relationships need real moments with raw conversations to truly grow. If we all took the high road at all times, would it even be a high road anymore? The truth will set you free. Usually. Almost always. But as a holder of many secrets (job hazard), I have seen situations where the truth might hold one hostage and cause immeasurable suffering for years to come. Say what you mean and mean what you say. I love this one. In theory. But with my silver tongue and deep emotions have come words I did not really mean in times of hurt or anger. I think this is a great ideal, a lofty goal. But when we mess up, apologize- and sooner rather than later. A quick imperfect apology generally means more than a well-stated overdue one. What about you? What have you clung to? What feels true and what feels forced when you consider the building blocks for your social or moral compass? Better yet, what feels fake? What makes you squirm when you say it out loud to another human? If you squirm, stop saying it. Stop believing it. Our truths can evolve. Our truths don’t have to match those of our parents or our spouse. Our truths are our own. Here’s to both of us building our own houses of morality and ideology. And leaving room for repairs. Godspeed. I love a good puzzle! I don't want 1000 pieces, 500 is plenty for me. I don't want it all to be the same color either. I want lots of colors and a scene or image that brings me joy or peace. Give me a cheesy movie, some warm pajamas, a cup of coffee or hot tea, and a day off work, and I can sit at a puzzle table for hours. I love it even more when I'm sitting next to friends or family or if we each peck at the puzzle over a few days. Collaboration at its best! I love the fact that we can all be looking at the exact same pieces and patterns, but one person can "figure it out" when it has been right there in front of us the entire time. I also love that there are no electronics involved! Much like life, a puzzle teaches us that there are many ways to look at things. Patience is key. And teamwork makes the dream work. All the cliches really "fit" into working a jigsaw puzzle. ☀️
This particular puzzle was SO hard to finish! All those Star Wars uniforms tended to blend together. The kids started it with us but towards the end, my dad and I were the only ones pushing through to the finish line. Working puzzles with my dad hasbecome a favorite pastime for both of us. We can chat, or work in silence. That time with him has been a gift. Do you enjoy working puzzles? What does it do for you? I can't wait to hear all about your puzzle motivations in the comments below. I love interacting with my readers. For more of an inside look into my days, you can follow me on TikTok, Instagram, or Facebook. 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! Godspeed. Apologies. Hurt feelings. Regret. 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. Carry on. Time Out Time Out I need to shout and push and pull and rip and tear but I can't do that, so I just sit here Time Out Time Out 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. Godspeed. Please consider supporting my fellow Hope*Writers by reading their work: The Resurrection and What it Means for Believers by Lisa Granger https://lisamarcelina.net/the-resurrection-and-what-it-means-for-believers/ Finding Meaning in Life … and Death by Dianne Vielhuber https://simplewordsoffaith.com/2021/05/14/my-most-important-3-ring-binder/ The New Stage of Grief: Finding Meaning in Hardship by Ashley Olivine https://www.ashleyolivine.com/the-new-stage-of-grief/ Honors Day 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 1 2 3 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. Honors Day 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, still-trying-to-figure-it-out 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. Godspeed. 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. 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. Disconnected. Cast out. Overlooked. Unwanted. Unnecessary. Unimportant. Small. Invisible. Rejected. 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. Godspeed. 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. Godspeed. 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. 💜 photo credit: www.gretchenrubin.com Gretchen Rubin is an author, podcaster, mom, wife, lifelong learner whom began her career as a lawyer. I have read 4 of her books and saw her at a live event in Atlanta in 2019. I listen to her podcast when I can, and I love her curiosity about life, community, relationships, and self. Gretchen developed a framework from which she thinks people are motivated and then named the 4 tendencies based upon said motivations. Gretchen's 4 Tendencies are:
More about each of the 4 Tendencies:
I asked my parents, spouse, and oldest child to take the quiz so that I can better understand what motivates them. Knowing the tendency of someone you love has made a difference in my life. If that person is not easily motivated by external forces, then I may realize that my actions may not affect their efforts whatsoever. If the ARE motivated by external sources, I take that into consideration before asking them to do something. Jan 30, 2021- Feb 3, 2021 Red, painful eyes start with painful vision and light sensitivity (UVEITIS). Feb 3, 2020-Feb 8, 2020 Tiny dots of a rash begin on my neck- they don't itch, burn, or hurt at this point. I call my dermatologist to schedule a biopsy, assuming this must be related to my sarcoidosis. Feb 3-March 8, 2021 Rash kept getting bigger and more painful. Not responding to topical Rx creams. Went for 2nd biopsy on March 8th, the day I started my 30-day medical leave. Focused on walking, sleeping, hydrating, and eating clean. Also journaling and resting. March 8-April 8, 2021 Off work. Tried the AIP Diet. No gluten, no dairy, no sugar. Derm and Rheum also put heads together to double my Methotrexate dose. The diet was difficult but my joints and skin "felt" better even though my skin still needed lots of help! April 8- August 8, 2021 Back at work. Still working covid. Boys off for the summer during some of that time. Started Humira in May 2021 and stopped Methotrexate. Skin would wax and wane, but I would say it eventually cleared by early to mid-August. Joints feel much better on Humira. Energy level too. September 2021 Had my 2nd episode of uveitis. That responded quickly to Prednisone eye drops. Skin pretty clear, but under more stress with some work and family stuff. Delta variant of covid is ravaging my patient population and friends. Evidence of proteinuria again so will follow-up with my nephrologist (that's more sarc-related, less psoriasis-related). Still on Humira. Echo and PFT's slightly worse than last year, but lung & spleen CT's show that the Humira is controlling my sarcoidosis. March 2022 I have had at least 2 more episodes of uveitis since the last update. Skin stays mostly clear with the occasional flare in the anterior portion (front) of my neck. I wrote this piece for all of my fellow Psoriasis Warriors who are walking this painful, lonely road. It is SO HARD. One can think they are not a vain person, but when your LARGEST ORGAN (your skin) is literally on fire with inflammation, it's hard to "hide" from vanity, comparison, self-loathing, and frustration. If you love someone with psoriasis, please share this with them and with others who love them. I hope it brings someone comfort to know they are not alone and that there are those people who will love us no matter what. Dear God, show me the way I am on this road Lord Do I exit or do I stay? I was once a little girl Learning the Apostle's Creed and the Lord’s Prayer Now I am a grown woman And I have seen far too much despair I have healed some I have broken some Bodies and hearts and souls And as I travel down this road Lord I reach desperately for your hand to hold There are nights I feel so lonely I know you are there but I can’t find you There is an emptiness that can control me I try to fight it but it obscures you There is beauty in the absence Sometimes I see it and sometimes I feel it A tree that has shed its leaves A body beyond Earth's healing A notebook blank and waiting for a pen A shared glance between strangers where love will soon begin A happy baby waiting for his first tooth A hopeful high school senior full of ambition and youth My Mammaw’s vase waiting for its perfect bouquet My middle schooler’s energy as he starts every single day Do I notice the widow alone on the bench? Do I dwell on her grief - Do I absorb her heart-wrench? Or do I peek in the bird’s nest that comes every spring? And await its perfect eggs Soon baby birds with tiny wings There is beauty in the absence God For even sorrow and loss is proof of love I will travel the road you paved for me Gently nudge me in those quiet corners Lord Help me remember I am enough Amen. In my 24 years of nursing / NP work, I have seen countless cardiac events either in action or the ramifications of such events. On a personal note, three of my four grandparents had strokes. I lost my paternal grandfather when I was only 4 and he was 55 due to a massive stroke. My paternal grandmother had stents in cardiac and non-cardiac arteries as well as "open heart surgery" CABG (coronary artery bypass graft). I have been affected by heart disease on a personal and a professional level, and I want to help patients understand the true risk of death and debility associated with cardiac events. Here are the top 10 reasons I refer patients to the cardiologist:
Let's talk a little more about each of these 10 conditions and how a patient may actually present to my office with these symptoms.
I have had patients in their thirties suffer from strokes and heart attacks. I have seen heart failure, cardiac arrhythmias, and high blood pressure in patients from childhood, young adulthood, and beyond. I doubt there is anyone in America who does not personally know someone who has been affected by heart disease. In honor of America's Go Red for Women Month (every February), I encourage you to schedule your wellness exam with your primary care provider and to start paying more attention to your heart rate, blood pressure, water intake, weight changes, and dietary choices. Your heart matters to me! Godspeed. I have a beefy cardiology post that was supposed to drop today, but I don't wanna. I've started it, and it's important, but it's way too serious after coming off a glorious restful vacation. Instead, I thought I would share all the random thoughts that have been filling up and overflowing from my overworked brain. Maybe you can relate. Maybe not. Either way, you might find these entertaining.
Anywho, it's Saturday- the sun in shining - and if you're exhausted parenting toddlers right now, just enjoy the Duplos and Play-Doh. Starbucks and Xbox await! Entitlement and minimal communication are just chillin' - they'll come soon enough! Godspeed moms and dads. How did our parents survive us? 🥰 |