google-site-verification=ZTYg11mvIYHNbEU2g5SxL9_QHKENf5J6gzQJmMAjvss
You're on a roadtrip. You're headed to the beach. You have 10 hours start to finish and it seems like it is taking FOREVER. You stop a few times for bathroom breaks and lunch. The travelers are getting cranky. They JUST WANT TO GET THERE. When will we get there? How much longer? And then you realize. We are over halfway there. At 47 with 2 gnarly autoimmune diseases, I'm probably well over halfway there. I rushed the beginning. I looked so closely towards the end goal that I forgot to enjoy all the scenery I passed. Or did I? So I slow it way down.
As much as I can. I watch each inning of my youngest boy on the mound or at bat or hovering just off third like it's the bottom of the 9th in the World Series. I sit patiently before the curtain rises at every one of my middle boy's performances. I have no where else to be. I am his mom, and I am watching him shine. And I dance at my oldest son's wedding. I laugh. I smile. And I remember what it was like to be twenty years old and in love, the whole universe at my feet. I sip my coffee with my husband on the rare occasion we are enjoying breakfast together. I look out over my back deck at the spring leaves, the blooms of each flower, the squirrels scurrying, and the birds in flight. Slow down, Mr. Squirrel. Not so fast, Mrs. Bird. What's the hurry? You see I just left Mr. Jones or Mrs. Smith and they remind me each day that the end is not always easy. The end can be lonely, painful, or both. The end can be joyous and abundant, but we have no guarantees. So I slow it down. This line between my eyes on my forehead is from my Granddaddy Taylor. He earned his and so did I. I am reminded of him each time I look at it and I remember his favorite line: "aren't you glad you got to see me?" 🥰 If I cover it up, needle it away with miniscule doses of botulism, does that mean life never happened? The tears I cried and the belly laughs I bellowed - weren't those worth these lines on my face? And here we are, old friends. Me and my impatience. Me and my ambition. Me and my PLANS. What a farce. What irony. What next? The sun will rise and the sun will set. I choose to embrace these next decades with a little LESS energy and a little more PRESENCE. I'm showing up this time. I'm all in. I want to love hard and laugh often. Will you join me?
0 Comments
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.
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. 💜 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. Monthly meal planning has taken me YEARS to develop. One thing to note is that there are 3 adults rotating the cooking in my family. My parents live 2 doors down from us and we decided many years ago that it was easier to feed 7 than 2 (for them) and that mom didn't mind cooking for 7 twice a week if it meant she and dad would be fed by us several nights per week. Some weeks that looks different. Since my husband and I both commute about an hour each way to our jobs, and he works night shift, my mom may have to cook 3 times some weeks. Kids' sports and school activities can also affect our cooking rotation. Let's look at monthly meal planning with a few good tips or rules to get you started:
Now let's look at each question in more detail:
Pro tip: track what you are currently eating for a week or two as you are mentally preparing yourself to begin this process. Just like "getting on a budget" - it is extremely helpful to see what you are currently eating as a family. If you are eating out 5 out of 7 nights, it is unfair to expect you will start cooking 5 out of 7 nights immediately. That is a recipe for disaster! Pun intended! Maybe try cooking 3 nights at first. START SMALL! Good luck and just remember: it doesn't have to be fancy, it just has to be planned.
So there you have it! All my favorites from February 2022! I hope you find something you like or even just a reminder of something you need or would like to try out. That's why I post my favorites- they are fun and I like reading or watching other people's favorites. Feel free to leave comments below! I would love to hear from you! So here I am. 11:32 PM on a Friday night. Laundry is caught up. Dishes are done. I've been off work for 5 days for a knee surgery, and I'm wide awake. The house is fast asleep, but here I sit. Why is rest so difficult for me? I can't blame the pandemic, because this has been an issue for decades. I don't sit well. I don't laze well. I don't relax easily. I feel guilt when I am unproductive, and I'm not sure why that is. Oddly, I can usually relax on vacation. Sure, I bring a puzzle, books, journals, and planners to work on, but I can sprawl on a stranger's couch without hesitation. I can sleep late in a stranger's bed, and I can (sometimes) leave dishes in a stranger's sink. I love vacations where outings are limited and "doing nothing" and "not having a schedule" are the highlights. BUT I CANNOT SEEM TO DO THAT IN MY REAL LIFE AT HOME. Not a single person on planet Earth outside of my household would know if I had been a complete lump the past 5 days, but I would know. Am I judging myself? What is this all about? Busy-ness is a disease for sure. I am the first one to ask my patients if they are practicing any self-care or getting enough sleep. And I do practice some self-care and I really do want to be asleep right now. But my breathing is shallow. My pulse is approaching 90 and I'm seated. My mind feels scattered and my heart feels heavy. Yes, there are several things (and people) on my mind. There are unfinished projects floating around in my brain, and there are conversations I need to have. Writing is usually the best way to get all the "yuk" and "to-do's" off my mind, so I'm hovered over this laptop waiting for peace. Now I sit here, with this truth I long for the exhaustion that comes with youth For with each decade comes more woes My jaw won't relax My eyes won't close Perhaps I will run and jump and ride And dance in the kitchen and sit outside Can wind and sun and trees and breeze Steal my worries, my need to please? I see my children doze off with smiles Such hope and joy imaginations wild Come on, sweet girl it's still in you The hunt for knowledge, the quest for new Lay that body down dear girl, don't fight it anymore Put those thoughts to rest dear girl, stop that mental tug of war You are enough You've done enough My love is enough Today was enough This goes out to anyone anywhere who has watched the clock, felt the shallow breathing, or had feelings of guilt associated with REST. You are not alone.
Godspeed. When I sat down to do my YEARLY REVIEW at the end of 2021, I was literally drained. I was exhausted: mentally, physically, emotionally, and spiritually. I could barely even form a sentence in my head. As I started PLANNING MY YEAR AHEAD as I usually do each holiday season, I started to see just how many things were already on my calendar. I am not sure if I felt disbelief, disgust, or disenchantment. "That will be cancelled. That won't happen. I doubt we actually do that." After two years of cancelled, postponed, and rescheduled plans, I almost reached for a pencil instead of a pen. I am eternally optimistic, but I am TIRED. You know those days where you sit down in the evening and you feel like you've been to DisneyWorld with 2 toddlers and 2 strollers and a newborn? Those days where you are driving home from a busy day in family practice and you aren't even exactly sure what your own name is (much less a disease or dosage of medication)? I feel like we've all had TWO YEARS of those days. So I decided to just boycott goals altogether for 2022. I wasn't going to make goal(s) for Health, Finance, Education, Personal Growth, Career, Family, Marriage, Spirituality, Home, etc like I usually do every year. The thought of doing that after I wrote my GOAL SETTING post was just as insurmountable as climbing Mount Everest (for this girl who already battles a chronic lung disease). Choosing a word for the year? Meh. And usually I am ALL OVER THAT!. But the only words that have come to mind lately (that don't include mild profanity) are flexibility, change, resiliency, and stamina. And I realize all of those words are entrenched in what I have LEARNED FROM THIS PANDEMIC as a frontline family NP. So I haven't chosen a word just yet. And I'm not sure that I will choose one for 2022.
And what I'm finding is that wearing ACTUAL CLOTHES (no scrubs, no standard mom "leggings and a tee" uniform) makes me feel better. It makes me feel better about myself, my life, my marriage, my work, and my day. I never thought I would be typing this, but it's TRUE. I choose healthier foods and move more when my pants have a zipper and a button. 👖 I try to have healthier emotional reactions when I don't look like I just rolled out of bed. 🧘♀️ I am reminded of my passion for medicine when I am dressed the professional part. 👩⚕️ I am even nicer to my husband when I like my reflection in the mirror. 👩❤️👨 I feel better about spending all the money I have spent on clothes now that I am actually wearing them. 😜 So there you have it. I set one goal for 2022. It is simple and it used to be automatic. What happened to the girl who loved shoes and purses and dressing up? Where did she go? Who and what took her from me? I feel her trying to emerge again. She is ready for this new year. She has no idea what's going to happen and no control over any of it. But she is showing up. And she looks and feels AMAZING. 👗 *** most of the time
*** except on Mondays *** or on days when her kids are off the chain *** but she is trying ☀️ How on earth is it already time for 2022? Where did 2021 go? I'm not sure, BUT, I am ready for 2022. 2021 was messy and ugly in many ways. On a personal level, it was unkind to my health. I received a new diagnosis of psoriasis in March and had to miss an entire month of work while my body was adjusting to new medications and my skin was trying to heal. October revealed an unexpected opportunistic infection (since I'm immunocompromised) that required strong antibiotics and made me feel pretty lousy. Since November 1, I have been hobbling around on painful swollen knees and am facing unexpected knee surgery. Pity party? Nah, not my style. Swallowing it all? That's my go-to. When I think about my health and how unfair it is that I've tried to take care of my body my whole life and I'm still getting the short end of the health stick, I can get pretty low. Then I think of all my patients who have it "worse." And I swallow it. I shove it down. I brush it off. But is that healthy? NOOOOOOOOOOOOOOOOOOO. So I'm learning to acknowledge my own feelings. I'm sad that my body is not behaving. I'm angry in some ways. I'm frustrated for sure. I'm still thankful that I can work for right now. I am beyond grateful for my parents who live 2 doors down and help me daily. I'm tired. I'm realizing I have X amount of energy each day and my family needs the bulk of it. If my job takes most of it then I'm robbing my family of my best self. Filing for disability has been on my mind more in the past 9 months than it ever has during this 5 year sarcoidosis journey. So what next? New year, new adventures, new planner, new goals, new.... what else is new now that I'm 45? I have a lot of old. Old hurts. Old unmet needs. Old furniture. Old clothes. Old shame. Old junk in my kitchen drawers. Old relationship issues that deserve a conversation. An old van that has chipping paint but it's paid for and gets us to ball tournaments. I think the reflex for all of us is to replace the old with the new and that will make it all better. New clothes. The newest kitchen gadget. New furniture or decor, ON TREND, my dear! A shiny new SUV that costs more than most people's annual salary and gets 12 mpg. But boy does it look good and that's what counts, right? I'm no longer trying to replace the old just by reflex. It's harder to keep it and try to keep it running. Purging the clothes and kids' toys is definitely good, but when we throw out things that still work but aren't "good enough" for whatever standards, what does that say about us? Who and what have you thrown away and replaced with newer and easier? (ouch)... I'm falling apart health-wise in a lot of ways, but I "still work." Will my family or employer throw me out? Will my friends forget about me if I'm not as active and fun as I used to be? Where does that leave me? As an Enneagram 3 (Performer, Success Driven), I've been gut-punched this year by my body's betrayal. But God must be telling me something. I know He has a plan. I have to trust and slow down and just be. NOT. MY. STRONG. SUIT. Perhaps 2021 leaves you feeling like I do. Maybe you lost someone you loved. Maybe you were also betrayed by either your body or someone you trusted. Maybe you felt out of control all year like I did? Maybe you spent too many hours googling vaccines and viruses and death tolls like most of the world. Maybe you feel all the "junk" you've shoved down and swallowed for however long starting to surface and want to be named and noticed. I feel that with you. 2022 can be a renewal for us, my friends. I'm going to intentionally name what's working, what's not working, what is worth repair, and what really needs to be purged from my life. This goes for relationships, time spent, health choices, what I consume digitally and physically, items in my home and closet, and my thought life. I'm going to check myself when I just want to replace the old for that quick dopamine hit. I'm going to try to sit in the uncomfortable and define what's causing it. I can't keep running 90 mph. 2022 is for slowing down. It is for evaluation. It is for growing up, finally. Godspeed. I see it every year. It starts around the first week of November and it lasts through the middle of January. The holiday blues. As I’ve gotten older, I’ve actually slowed down enough to think about trends in my practice. Sure there is an actual diagnosis of seasonal affective disorder, but this is different. This is deeper. This is hard. And here’s how I see it every day for two months straight in my exam rooms: Me: Hey Mrs. Jones - it is so good to see you. I know we had to zoom for our last visit. What’s new in your life? Are you ready for Christmas? Do you have to cook for Thanksgiving? Are y’all going anywhere? Mrs Jones: oh you know, I will be cooking for the family for Thanksgiving. And the children and the grandchildren may stop by for Christmas. No... I don’t go anywhere. I’m ready as I’ll ever be. Blank stare. Obvious reflection. Anyway how are your boys? Are they ready for Christmas? Do you have to cook for Thanksgiving? Me: oh yes I will be making my Mammaw’s dressing, sweet potato casserole from an old Birmingham recipe from one of my mother’s friend’s mothers, my layered salad that a nurse I used to work with taught me how to make. Gosh that was over 25 years ago now. Blank stare. Obvious reflection. Daddy will fry the turkey and my husband will fix the ham and a peanut butter pie. Mama will make the deviled eggs and the Waldorf salad. I will make my mother-in-law‘s corn bean casserole and some homemade mashed potatoes. Of course we will have rolls and cranberry sauce. Another blank stare. I haven’t seen my mother-in-law in over five years. The boys? Oh yes, they are more than ready for Christmas. We got them a matchbox Advent calendar they can’t wait to get started on. They’re growing up so fast. Blank stare. Obvious reflection. The oldest will be home from the Air Force. He and his girlfriend will be together the whole time I’m sure. I smile. But I’m nearly in tears. What is going on? And we sit for a moment. Two women born of different decades and sometimes different skin colors who have lived two very different lives at the outsider’s glance, but are so alike on the inside that it’s haunting. Her daughter is sitting beside her. They look and act so much alike it makes me smile from the inside out. I’m sure that’s what people say when they see me with my mother. I don’t have a daughter. Will my boys take care of me? Alright, get it together Amy. We finish out our actual medical visit and say our go-to goodbyes: Happy Holidays. Y’all be safe. Call me if you need me. And now, after ALL these years, I often hear “you know I love you.” And I believe it’s true. It’s not forced. It’s been earned. Is it against the rules? No, not my rules it’s not. Truth be told, I love her too. Maybe because I see myself in her and I’m cheering for myself in my old age. I’m giving myself a head start and saving myself a seat. I’ve practiced in Kentucky and in Georgia. I worked in a nursing home for six years and then made rounds as a nurse practitioner in that very same nursing home. I’m an old soul myself so I think I draw my elderly patients in and they stick. I stick to them too, and I think they know it. I’ve had so many Mrs. Jones over my 17 years. I’ve had Mr. Jones and Little Johnny Jones or Little Sally Jones as well, but I am so connected to Mrs. Jones that I can almost finish her sentence. Now I’m driving home and this 2 Lane Highway surrounded by trees and cows and horses makes me feel like I could be in any of the four states I’ve lived. It’s familiar and so are these thoughts. I’m a little girl in my childhood home with my brother and my parents and we just came home from candlelight Christmas Eve service and mama made lasagna. I haven’t really been hurt yet. I don’t know what it feels like to love somebody besides my family. I feel safe and secure and like I can do anything in this world. How did Mrs. Jones feel at this age? How did you feel at 10 years old? Now I’m driving home from Tuscaloosa with Delta Zeta on my back windshield. My finals are over. I get to see my boyfriend. I’m taking pre-med classes as well as a full nursing load, but I’ve been hurt by now. I’ve been disappointed and lied to by some people I trusted. But it’s the holidays you see, and I still feel like I’ve got a handle on things. I wonder what Mrs. Jones was doing at 20 years old? Had you been hurt by then? Oh wow. I didn’t really see this coming. Or did I? I’m sitting alone in my first marital home. Half my furniture is gone. Someone I love deeply told me I don't really need a Christmas tree this year because "it's just you." Am I not enough for a tree? Who am I by myself anyway? I’m driving to Georgia for Christmas. I don’t think I’ve ever been this sad in my life. I wonder what Mrs. Jones was doing when she was 30 years old? Was her heart broken like mine? Was yours? Gather around now. It’s time to eat. My baby boy is four years old and can’t seem to stop smiling. God gave him to me for sure. The first one I carried is six and almost as smart as I am. The one I didn’t carry but I’ve fed and loved now for seven years is sitting right next to me. Is he thinking about his mama? Will he ever see her again? Tiny pieces of my heart crumble for him. I just started taking prednisone for an incurable autoimmune disease I had to look up on the Internet. Lord have mercy and I really do mean "please Lord have some mercy." I’m only about 3 1/2 weeks into a lifelong diagnosis and I don’t know what the future holds. I’m scared. I’m sad. Merry Christmas y’all. It’s the holidays, right? I wonder how old Mrs. Jones was when she first questioned her mortality? How old were you? Were you 40 years old like me with a child in pre-K, one in first grade, and one silently falling apart right in front of you? You see that’s what the holiday blues are. They are every heartbreak and broken promise. They are all the fears and all the lost relationships. They are that empty seat at the table. The phone that barely rings. They are the one that got away and the one that stayed too long. They are your mother, your father, and your children. They are every husband you’ve ever had. How can they not be? We can’t erase our memories. I don’t have a cure for the holiday blues. I think they’re part of life. Mrs. Jones might tell me they get better with each decade or she might tell me they grow and take up more space than we should allow. I’m scared to ask her. None of us even talk about it really. We just say Merry Christmas, Happy Holidays, y’all be safe. So this is my letter to you at age 45. Some heartaches of mine have healed and some are still there. I don’t think we should only remember the good times because that’s not what made us. It’s certainly not what made me today sitting right here baring my soul and giving you the permission to bare yours. Acknowledge the things that built you. Godspeed. This goes out to every Mrs. Jones that has ever allowed me to know her. She is me and I am her. And I thank God for that. A popular book in the field of marriage and relationships is Gary Chapman's The Five Love Languages. In his book, Dr. Chapman discusses the five core languages used to give and receive love. Knowing your love language and that of your partner is quite beneficial as you navigate various scenarios and frustrations throughout your relationship. I will link the quiz below. The 5 Love Languages according to Dr. Chapman are:
Originally written in 2004, the book has now sold over 6 million copies. I read it when it was originally released, and I read it again when I remarried. I knew the importance of speaking the same love language (or at least being aware of my partner's love language) . I think it is helpful to know your close friends' love language and the language of your children or other close family members. If you are not familiar with the concept, I will use this brief example: Amy (acts of service, physical touch): " I am so tired. Ugghh I have so much to do. I don't know how I'm going to get it all done." Husband thinking to himself (words of affirmation, quality time): Amy is so tired. She should go to bed. Maybe if I keep encouraging her to go to bed, she will. Amy thinking to herself: If he would fold this laundry, then maybe I could go to bed. But instead he's just telling me I should go to bed. Husband thinking to himself: Why is she folding that laundry when she is so tired? If I offer to fold the laundry, she may lash out at me since she's so tired, and (needing words of affirmation) that would ruin the night, so I will just stay with her (quality time) and gently encourage her to go to bed. Amy fuming at this point (acts of service, physical touch): If he's not going to fold the laundry, he could at least rub my back. Then maybe I could relax enough to go to bed. But husband doesn't rub my back because he wants the words of affirmation and reassurance to do so and the spiral continues. Neither spouse did anything WRONG, but remembering each other's love language might have made for a much more pleasant evening. Pleasant evenings bleed into smooth mornings and so forth. This example is just one of many. It can apply to family, friends, coworkers. You may be trying to show appreciation with a gift or money but they WANT / NEED to hear you say why you appreciate them. They may be doing all the little chores and acts of service to get your attention, but you WANT / NEED them to stop running around and spend the afternoon with you without any distractions. It really is fascinating once you know the love language of your partner or best friends. You can spend an entire afternoon dissecting why one situation went south based on love language miscommunication alone. But back to PHYSICAL TOUCH, I think this love language is often overlooked and misunderstood. For obvious reasons, it's viewed with caution, and while that is good... it is also robbing us of a basic human need. With the surge of technology and virtual everything, many of us go days or weeks without touching another human, particularly these last 2 years. Throughout my career, I have used touch as a means to reassure and connect with my patients. Since I received touch as a child and infant in a safe, healthy environment, I have been able to give touch easily. I know that is not true for everyone I encounter, and I acknowledge that. Here are some ways I have used touch in my practice:
Here are some ways I have used touch in my home with my children:
My challenge to you, wherever you are, however old you are, whatever childhood you had, whatever love language you prefer, however many times you've been hurt, is to THINK about physical touch in the setting of a newborn baby. I have linked an article below touting the science behind touch and neurological growth and development. If you're old enough to find this article, then you have been a child yourself. You may have children or be involved in a child's life. We all know that a crying baby or toddler is often soothed by the touch of a loved one or caregiver. Animals are the same way. I dare say, adults are ALSO the same way. If you love someone (your child, your partner, your mother, your close friend), touch them. HUG them. Incorporate safe and healthy touch into your daily routine. We have grown generations of adults now who are not used to being touched. Those untouched adults are now having more untouched children. Those untouched children are looking for affection in ways that a simple "cuddle session" (what we call it at our house) may have averted. It saddens me when I shake a teenager's limp and nervous hand or attempt an appropriate side-hug with someone and am greeted with surfboard-stiff awkwardness. I see the physical and emotional effects of the untouched in my office each week, and it breaks my heart. Pat Harris was my first grade teacher. She had a Hug-Me-Spot right by the door to her classroom. No student could enter her room in the morning or leave her room in the afternoon without hugging Miss Harris on the Hug-Me-Spot. This world needs a Hug-Me-Spot. This world needs an army of Miss Harrises. The rules and restrictions have created a generation of kids that don't know what touch is actually appropriate, and adults that are too glued to their phones to use their hands to rub their child's back or snuggle on the couch. These touch-starved kids marry each other and are LONELY and starving for affection that was never modeled for them. And here we are. I challenge you to touch someone today. And tomorrow. And the next day. Hug. Cuddle. Kiss your partner. Squeeze your child. Hold hands. Make touch a part of your day every day. We may really change the world. 🌎 Let's try it. ☀️ Godspeed.
I do want you to listen to the podcast, because I think there are some big pearls in this interview, but here are a few highlights:
Find out who is in your circle:
Plan as much as you can ahead of time:
Final pro tips: -Keep a medical binder of all your paperwork -Have a designated inbox for all incoming papers (follow The Planning Woman for more on this) -Apply for intermittent FMLA with your employer -My personal pro tip: PET THERAPY! 🐶🐱 Charlie the Dachshund makes everything better!
When a patient presents with hair loss, I obtain a thorough history:
I then perform a thorough physical exam and order the following tests:
That may not “answer” your question but I hope it helps you know what a clinician will be looking for with this presentation of hair loss. 🩺👩⚕️ Personally, I have dealt with hair loss from taking Methotrexate for my sarcoidosis.
It started coming out in clumps in the shower and then in my brush. I soon had very patchy areas of hair loss all over my scalp. My hairdresser advised me to stop applying heat to my hair when possible, to wash my hair less frequently, to avoid ponytail holders when possible, and to avoid any hair color or harsh chemicals. I usually got some blonde highlights in the spring put in my naturally red hair, but I went without those for 4 years while I was on Methotrexate. My rheumatologist increased my Folic Acid dose from 1 mg to 2 mg daily, and I ordered Biotin off Amazon Subscribe and Save. I took the Biotin daily to help with hair growth. I am finally off Methotrexate and on Humira and am seeing hair growth again. Losing my hair was very emotional for me. My bright red hair has defined me for so long. I now knew what all of my patients struggling with hair loss from chemo or other medical reasons were feeling, and boy was it a wake up call. My heart goes out to anyone struggling with hair loss. Much love to you and I hope this helps.
Bonus question: what can I do to help? I feel so helpless!
***as always, consult your PCP for your healthcare. I’m trying to raise awareness. Let’s not bicker and judge over vaccine status. Let’s educate ourselves and let’s come together to get out of this public health crisis!!!***
This is a great question and one I have seen asked many times on many platforms.
I have 2 autoimmune diseases (sarcoidosis and psoriasis) and take Humira. Prior to Humira, I was on Methotrexate. I took my first Pfizer dose in December 2020, second in January 2021, and I received my third in Aug 2021 since I qualify for the third dose now. I read the pfizer trial and the data is phenomenal. I had zero side effects all 3x other than a sore arm. That is my patient experience. As a primary care provider, I manage a panel of about 1800–2k patients. I’ve had ZERO deaths or serious side effects from the vaccine in my panel. I have had 2 deaths (age 78 with lung disease, age 49 and healthy), over 225 infections, countless hospitalizations - some requiring ventilation, and I am seeing long-term effects from COVID: stroke, pulmonary embolus, neuropathy, still haven’t regained taste / smell, palpitations & arrhythmias, chronic fatigue, chronic brain fog, and lung damage. I think the vaccine is being “pushed” because I know I can’t keep up with the volume of sick patients I’ve seen in the past 18 months. I know every ICU in my state is now on diversion. I know we as healthcare workers are leaving the field due to burnout. I’ve never seen anything like it and I’ve been a nurse 23 years, an NP for 17 of those. ***Always consult your PCP for your healthcare. I trust and believe in the vaccine, but I do not think it should be mandatory. Let us not bicker over vaccine choices, but let us come together and try to get out of this public health crisis!*** What can I do at home for Covid? 1. Zoom with your provider 2. Walk around as much as you can- covid causes blood clots 3. Lay on your belly when you’re resting, not necessarily when asleep. We are proning Covid patients (placing them on their belly) even when they are on the ventilator to help move mucus / fluid and drain the lungs. 4. Hot steamy showers. Even if you don’t feel good enough to shower, sit in your smallest bathroom with the steam running to help open up the lungs. If you feel lightheaded though, stop. 5. Hydrate hydrate hydrate - covid is an inflammatory virus and hydration is key! 6. Monitor your pulse and oxygen levels as I mentioned yesterday. 7. What has fallen out of favor / lacked statistical backup and/or caused harm: ivermectin, oral steroids prior to hospitalization, hydroxychloroquine (Plaquenil), unnecessary antibiotics 8. Mucinex, zinc, Vit C, Vit D, Singulair (it’s Rx though) are all in the grey zone- I don’t think they’ll hurt you but they may not keep you out of the hospital. 9. Finish out your quarantine please and thank you. 10. Chest percussion- look it up on YouTube How do I know if it’s Delta? 1. Big testing centers are batch testing swabs for variants and extrapolating that data to identify geographic variant trends. Your local urgentcare is not. 2. Whatever the variant, we treat based on symptom severity and delta may look good on you and horrible on Sally. Alpha (the original variant) may have put me in the hospital but barely slowed Steve down. 3. I equate it to flu A and B which are always swabbed and tested together each year. Every year I hear “oh Flu B is way worse than A. I’m so sorry you have B.” Etc etc etc when patients’ flu courses can vary regardless of the strain. 4. Anecdotally, my zoom covid visits with this wave seem different than in 2020. Less fevers. Less complaints of crippling headaches. Less loss of taste and smell. More dizziness & confusion (likely from low oxygen levels). Similar diarrhea complaints. Worse shortness of breath and chest tightness. Way more trips to the hospital and ICU. . My only vent-survivor told me all of a sudden they just Could Not Breathe. I should add this person is under 40 years old and is (or was) healthy. 5. Speaking of strains, did you know the Gardasil vaccine protects against 9 strains of HPV? Did you know Prevnar13 protects against (you guessed it) 13 strains of pneumonia? Strains have been around forever as have vaccines yet sudden interest persists. Just educating- no judgment on vaccine choices. I’m too tired. How many times can a child under age 12 have Covid? Will they develop immunity? Great question. I’ve seen twice so far and I expect more. Their bodies should be developing antibodies but no children have volunteered for my quantitative antibody study yet. Stay tuned. How soon should I get my vaccine after I have Covid? I’m recommending one month not 90 days IF you’re truly feeling better. Ask your PCP as they know your health situation. If I’m + today, symptoms resolve in 2 weeks, and then I’m + in 4 weeks, is it a reinfection or residual positive from original infection? I would ask if you ever had a negative test. If you did, maybe it is a re-infection but if you did not, I know we saw some folks stay + for 6 weeks or more in 2020. ***as always, consult your PCP for your healthcare. I’m trying to raise awareness. Let’s not bicker and judge over vaccine status. Let’s educate ourselves and let’s come together to get out of this public health crisis!!!***
Here are 10 easy ways to support someone with a chronic illness:
I have been living with a chronic illness for 5 years now. My family and friends have been a huge source of support. Even as they've tried to love me, I've witnessed their looks of "what can I do?" or "what should I say?". Most chronic illnesses are unique and involve multiple appointments with various specialists, countless medications, and years of simply managing one's health. These concrete examples can really help your loved one and make them feel important.
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!!! Early morning in a hotel room in Birmingham, AL and it’s already scorching outside. The boys are asleep, but I’m still basking in the glory of seeing an old friend last night. We picked up as if we were just sitting next to each other in AP English, but in reality, it has been TEN years since I’ve seen her face and hugged her tightly.
With social media, one can “feel” like we know what’s going on in each other’s lives, but nothing replaces uninterrupted conversation and rehashing old memories. When you’re 45 and you see someone who knew you at 11 in that awkward braces-for-her, round-thick-glasses-for-me phase, any ego or feeling of adultness goes out the window. We saw each other’s hearts get broken and dreams get lived out. I twirled a flag in a band she led onto the field, and she had to witness all my annoying academic dominance in high school. Can you believe she actually apologized for something she said that was cruel to me 30 years ago? She is one of the most beautiful loving souls I have ever known! Her faith and love for God has always brought me to her like a moth to a flame; she has been a safe space for me to express my faith. Why do we all hold onto old garbage? I do it too! We all do. This time our conversation covered motherhood, marriage, aging parents, losing parents, our nursing careers, and each of our unwanted entrances into the world of rheumatology. Just like in high school, we laughed and smiled about our daily quest to do the best we can and survive the icky parts of relationships, parenting, and work. Both a little wiser, and me definitely a lot humbler (her too, I’m sure), it was refreshing to be REAL for a few hours with my friend who saw me with 2” high bangs and overalls with one strap unbuttoned. You can’t lie to a friend who has seen all that. |