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"It's okay" I cooed in the dimly lit room "You are here and that's what matters" I offered as I swallowed the doom "Mom is gone" I announced if announce is the word It was a whisper. But it was final. I don't think they even heard... "It's a boy!" the doctor claimed and he held the baby up like a prize The mom cried and so did I because miracles still dampen my eyes Between the first day and the last day of each of our patients' lives Is a Thursday and a Monday and days our lives will intertwine Some days we are helping you and comforting or mending or teaching Other days we are sweating and saving and praying, begging, and reaching We don't control it, this fine line between your first day and your last But we often witness it, we hold space for it and we get etched in each others' paths Do I ignore it? Forget it? Pretend I didn't see it... or feel it or hear it or bow down and plead it? I don't think so, I just can't so, I let the tears fall when I can and we get up, lace our shoes up, and act undefeated It's an honor, a privilege, a duty dear friends but it's hard and it's long and some days barely end And no one asks us how we're doing, because we do the healing But I'm a mama, and a daughter, and a person with feelings. So at night, in the dark, when the beeps and alarms are gone Maybe next to our loved ones or maybe quiet and alone We cry and we replay and we wish and we sorrow As we heal our own boo-boos and do it all again tomorrow Author's note:
We don't forget. We saw it. We felt it. You were seen. And you were here. And we were with you.
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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. Godspeed.
At the end of the day. At the end of my life. When I'm old and gray. When I'm free from strife. I will smile every time I remember your face. And no one can take that from us. Godspeed. 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. photo credit: Oluwaseyi Johnson Was it luck that the young mother of three bumped her head on the bed post and came in to see me? She was picking up a toy that had fallen into the abyss between the bed and the wall but I felt we better not miss an internal bleed in her brain those are rare but not good so I ordered the CT scan and we both went back to mothering our brood When the phone rang that night I can't remember if I dropped the phone It's a brain tumor, and it's big Can you call her at home? Was it luck when the car struck her from behind? Plastic and metal shredded and busted near the yellow line Her head hurt, her neck hurt to the doctor she went And the MRI that was supposed to check bones instead showed a hint of the cancerous tumor that was showing no signs it was in her thyroid, she had no symptoms God was definitely on time Was it luck when she came to tell me she was in pain? Her abdomen was cramping, her bowel movements had changed As the dutiful NP, I pulled up her old scans Has anyone ever mentioned your lungs to you ma'am? My lungs, why would they? My lungs are fine well it says on here that there's an issue - do you mind if I order a CT scan of them just to be safe? God was nudging me, directing me, showing me the way Pulmonary fibrosis? what in the world is that? Well, sweetheart, it's serious, sit down, we need to chat Unfortunately it's the same way my own disease often ends Here's my number, you can call me, I actually do understand Was it luck when she looked at me with frustration and contempt? Ma'am I'm sorry I just met you, let me see if I can help You can't help me she thought, they've already run all the tests God tapped my shoulder, I looked a little deeper, there was one thing left I'm sure it's nothing, but let's check this one last thing It's an ultrasound, I know you're frustrated, but let's do it, okay? Okay, she said, and I wasn't sure she would actually do it But days later the phone rang, there's an issue, there's fluid The young colleague who sent her to me called me for advice What do I order next? What do you think it is? I'm not sure what to try. So I made my suggestions and prayed I was wrong. Come on Lord, let's let this young patient just move along. But He couldn't and she couldn't and my colleague and I cried Another cancer, a bad one, it's not fair, it's not right Was it luck that I've found some of these things at the craziest times? Or was it God this whole time leading me with His light? I'm no saint, I'm a sinner, I get fired up, I have faults, I get loud But when I slow down and I pray and I look up to those clouds I can feel Him, sometimes it's so strong I just weep Like right now as I type this, and all those nights I've lost sleep These are a mere few of the miracles I have watched unfold in my tiny little town with my regular little folks Are we special? am I special? I don't claim any of it as mine It's His, I'm a vessel, I'm a sparrow, I'm a scribe Dear Lord, there have been so many times I have seen You. Why me? Am I doing it right? I sure do try, but I need You. When the going gets tough, and my stethoscope seems too much My alarm goes off again, and I feel Your gentle nudge You'll tell me when it's time. When my service is up. It wasn't luck, God. It's been You. Knowing that is enough. Amen. Author's note: Age and any identifying factors have been changed due to federal privacy laws. Please help support my fellow hope*writers by visiting their pieces using the prompt work LUCK:
You are Not Lucky You are Blessed by Lisa Granger https://lisamarcelina.net/you-are-not-lucky-you-are-blessed/ Luck by Dianne Vielhuber https://simplewordsoffaith.com/wp-admin/post.php?post=10672&action=edit What Does Luck Have to Do With It? By Lori Shoaf https://www.lorishoaf.com/inspiringstories/what-does-luck-have-to-do-with-it Luck of an Evacuee by Ashley Olivine https://ashleyolivine.com/luck-of-an-evacuee/ He sat down, head in hands, downward glance She looked up, tears in eyes, uneven stance I walked in, low on sleep, high on caffeine They walked by, on the street, young love, just teens He stood up, paper in hand, PowerPoint prepared She fell down, learning to walk, not nervous, not scared I walked in again, ready to listen, ready to care Do I absorb it, do I deflect it... do I share? The first one has a heavy load, family stuff, he's overwhelmed The second one feels trapped, but she's 83, where would she go? The third one is me, with my own load and I'm trying to figure it out Do I carry their burdens or give them back? I was never told... The fourth one is the big boss and the fifth one was once us While the overwhelmed man and the trapped senior unfurl It's good to remember that someone somewhere is in charge and someone somewhere is just a happy little girl The teens are just teens and I remember how that used to feel The butterflies, the headrush, the lovesongs, the thrill While I dance between empathy and boundary and pharmacy Someone somewhere is getting married or at a funeral or in the hospital nursery And so I sit here replaying today's events and my children's faces and my own dreams Do I let the man's troubles and the woman's sorrow fall off of me? Am I a sponge? A shield? Sand through a sieve? Where do I put it? How do I move it? What do I need? Dear Therapist once asked me "how do you feel? what are you feeling?" and I just stared. I ask that question, Madame. How do you dare! She brought out the preschool book and reminded me the names: anger, sadness, anxious, scared, and my favorite- SHAME! So I ask you, my brothers, my sisters, my friends Where do we put it? How do we move it? Where does it end? We are connected. Are we a puzzle? Passing ships on the same sea? I am you and you are me and we are thee. What is the answer? I need the code. I need the key. I will take today. You take tomorrow. Let's give her next week. He can do the dark nights. They can do the long fights. Let's share the joy and spread out the misery. Next time you see him. Next time you see her. Next time you see me. Remember the pleasantries are just a mask atop the real things. The real beauty of the patient-provider relationship is the back and forth. Never stop sharing with us. It's why we got into medicine. But if you love us or if you live with us and we are quiet or distant... We are simply trying to figure out where to put it. Godspeed.
Before deciding if you love me or hate me, let's look at each of these in a little more detail. If you are reading this and you don't work in healthcare, I encourage you to close your eyes. Imagine driving to work where patients are very sick and you are responsible for their health. Imagine being extremely exhausted - mentally, physically, and emotionally. Imagine having the same conversations day in and day out. Imagine wearing a mask and face shield all day every day AND if you work in certain healthcare settings, full plastic gowns (sweaty and HOT) with even more restrictive masks (n95). Think about having heart-wrenching conversations about death and dying with families and patients that you have come to love over many years. Consider praying on your drive in and your drive home because you've worked in healthcare since you were 19 years old, but you've never seen anything as dark and dangerous, cold and pointless, savage and destructive as THIS. Imagine that you, like everyone else, have also been unable to see loved ones, travel, send your kids to school without a mask, and that you- like everyone else- have your own political and religious beliefs but you cannot mention those since ALL eyes and ears are on you. Now imagine doing that every single day for 20 months in a row.
I usually wrap up my posts with some heart-swelling, tear-jerking, or funny concluding thoughts. I try to connect us as humans, mothers, fathers, daughters, sons, sisters, brothers, neighbors, and friends. I find a way to touch you, soften you, move you even if it’s only for a moment. I don’t know how to do that with this post. I’m tired. I’m sad. I’m frustrated. I’m still hopeful. I still believe. I guess I will end by asking all of us to consider the division we have all felt over the past 2 years. Consider the lost lives and energy we have all spent to prove we are right. And hug your family. Hug your loved ones. And look your “enemy” in the eye before you judge their choices. We really are all the same. Imperfect. Scared. And trying to stay alive. 🌎 Taking multiple medications multiple times per day can be overwhelming at best. Remembering to take them, remembering to refill them with the pharmacy, remembering to contact the provider if you run low, and remembering to purchase or pick them up can be stressful, time-consuming, and somewhat depressing. I hate filling my 2 pill boxes each month (one for morning, one for evening). It is a reminder that I am living with a chronic illness and that my body has "failed me." My rheumatologist told me 5 years ago at the onset of my sarcoidosis diagnosis, "Amy, my goal is for us to get your treatment regimen in line to the point that you only think about having an illness when you see me every few months and when you take your medication. Otherwise, I want you to feel so good that you don't even think about it." I did not know then how important those words would be to me five years later. I have FINALLY recruited my husband to help me fill these PITA boxes (they are- I spill meds every month and lose count without fail). Now we turn on Ted Lasso or Bloodline and he fills one while I fill the other. It is depressing to accept that my body depends on the very THING I shell out every single day in my profession. I can truly empathize with my patients who say "but I don't want to be reliant on a pill." A few times I have shown them a picture of my med boxes, and sometimes it has provided comfort. One patient asked "oh my goodness- what is wrong with you?" so I decided I might share a little less. Vulnerability is hard. My best advice is to have a system for managing your medications if you have a chronic illness.
I just had a funny thought as I sipped my coffee. I wish I had read this article 19 years ago in my first few weeks of NP school. I wonder if I would have kept going to class? Probably... knowing me. I'm always trying to prove somebody wrong. Alright, alright, I'm about to let you all in on a BIG secret! Those who love me, and especially those who live with me know all of these truths, but I bet many of you are about to lose all your enamor for your health care provider. I am going to tell you about the daily life of a family nurse practitioner working in primary care. In essence, my day can be broken down into a few "sessions" or time periods.
Let me laugh with another sip of coffee real quick before I proceed.
Going back to my original "dreams" of working as an NP, did any of it come true?
Check out these posts from my fellow Hope*Writers for our monthly writing challenge. This month's theme was "daily": Oh, I Try by Jessica Weaver www.rootedunrooted.com/blog/oh-i-try Kids Sleep Meditation: 6 Daily Practice Dos and Don’ts by Ashley Olivine louvaria.com/kids-sleep-meditation/ Lessons from Daily Bread by Dianne Vielhuber simplewordsoffaith.com/2021/09/01/lessons-from-daily-bread/ Daily Conversations with God by Sharla Hallett www.sharlahallett.com/daily-conversations-with-god/ As a family nurse practitioner, I see moms, dads, grandparents, and kids every day in my office. One of the most common questions I encounter with my pediatric patients comes from frustrated, defeated parents or grandparents. HOW CAN I GET MY CHILD TO EAT VEGETABLES? Here is the tried-and-true method I've used with my own children to get them to eat vegetables (and other healthy foods):
Let's discuss each tip in more detail. There are some things you need to know before you begin.
If you are reading this article thinking that I am judging you, I am not by any means. I think all mothers and fathers are doing the best they can when they can where they are in life. You decided that you want to work on Johnny's diet, and you looked for help. I decided I could not lie to you and give you what you wanted to read. You need the truth! These tips have worked in my house and in HUNDREDS of homes of my patients throughout my career. Good luck Mom or Dad! You can do this!!! I am cheering for you! I'm waving broccoli and carrots at you from Georgia!
Throughout my career, I have had to deliver hard news to my patients. I have had to deliver even worse news to their families. It is the LEAST favorite part of my job, but I have found some comfort knowing I am delivering the news with compassion and empathy. I usually know the patient and family very well, and I think that means a lot. These suggestions may be helpful when faced with a difficult diagnosis.
Let's look at each suggestion in detail:
I am in a unique position in that I have both delivered and received hard news. At the age of 40, when my youngest son was 4, I was told I probably have lymphoma AND multiple sclerosis over the phone by a nurse. I was told to get an appointment with an oncologist and a neurologist as soon as possible. Many blood tests, imaging tests, and biopsies later, I was finally told that "you don't have cancer! And I don't think you have MS but I'm not sure. What you do have is a lifelong incurable autoimmune disease that can attack any organ and can be difficult to treat. And by the way, nobody has really heard of it and even us doctors have to google it when we see it on a chart."
So maybe those weren't his exact words, but it was close. And there will be a lot more to that story to come in my posts. I wish someone had used tip #3 with me when delivering my news. Pros:
Cons:
I have worked as a family nurse practitioner since 2004. As with any career in medicine, I have had peaks and valleys. Burnout and frustration countered by personal reward and gratitude. Humility for sure. In nursing school, I liked every rotation. I wanted to do "all of it." My faculty advised me to go into med-surg. I guess my love for "all of it" carried into my choice to primarily stay in family practice. I have done some moonlighting in GI and Pediatrics. GI was interesting, a challenge, and a break from a full family practice panel of patients. Pediatrics was fun, repetitive, and just a different pace. I think any career in medicine comes down to a few things:
In the words of Thoreau "It's not what you look at that matters. It's what you see."
How to have an effective office visit with your provider: There are some tried and true ways to have a productive, meaningful visit with your medical provider. As a patient with a chronic illness AND a family nurse practitioner, I have the inside track.
If you need more frequent office visits, ask for them. Your provider is PAID to see you. Your insurance is billed for those visits where as most providers do not bill for phone calls or portal messages. If you end up needing them before your designated 3 or 6 month follow-up and you have more than 1-2 simple questions, PLEASE schedule an office visit. As a provider with complicated patients of my own, I would much rather have that patient in the office with me to have a discussion than to do multiple back-and-forths over the portal. It’s better patient care. AND my time is used wisely in my employer’s mindset. Medicine is a business. Although so many of us really do care!!! Healing people is wonderful. It’s challenging and rewarding and exhausting and sad and scary and exciting and mundane. It’s refills and phone calls and charts and labs. It’s insurance authorizations and having the same conversations with the same patients over and over and over again.
But it’s also seeing progress and growth and determination. It’s witnessing families come together and sometimes fall apart. It’s being a steady presence in the lives of what starts as strangers and ends as friends. Can we be friends? Am I your friend? I like you. I’m cheering for you. I want you to do well! I think of you and I pray for you. I laugh and I cry with you. I love seeing your pictures of your babies and your successes. My heart hurts when you hurt. Where are the boundaries? I don’t want you to have my cell number, but I want you to tell me when you need me. How does that work? What are the rules and who makes them? I don’t want to think of you as just a name or a number. I am invested in you and you in me. Working in a small town feels like home. It’s likely that I know your mom, your neighbor, your hairdresser, and your child’s teacher. I wouldn’t want it any other way. At the end of our time together, I want you to smile when you think of me. I will always smile when I think of you. Even if you didn’t heed my advice. Even if you missed too many appointments. Especially then, because you made me work harder. I want you to know I looked forward to walking in your room and seeing you just as you are, whatever you were going through. I am thankful you put your trust in me. I know you made me laugh at least once. I saw you, all of you. I think you saw me too and I’m okay with that. |