Surviving a Chronic Illness Life requires a lot of time and energy - it's a full time job.
I'm in my 40's, married to my bestie and soulmate for 25 years. We have 4 amazing kids who are now young adults. I'm an RN but no longer able to practice due to my health. Everyday I battle Chronic Migraine, Rheumatoid Arthritis, Sacroiliac/lower back issues, Depression & Anxiety.
For so long I felt so alone, and it nearly killed me. Connecting to the Chronically fabulous community saved my life and I would only hope no one else go through that loneliness and anguish.
This is not the life I expected, but it is My Beautiful Migraine... and everyday I strive to learn and love. Making art through graphics, words and photographs is something creative I can do in my suffering time in bed. It's therapeutic and gives My Beautiful Migraine "voice."
Thanks for reading! :D
Please read this one. It’s so important to understand the difference between EPISODIC and CHRONIC. In Migraine World, they are 2 totally different animals, even though the migraine part is shared. How does one slip from Episodic into Chronic? One of the most common reasons: INADEQUATE TREATMENT. Many people are or love an Episodic Migraineur… this advice can save them! 💜
And my life started to warp… to change. It couldn’t really be happening, could it? Keep going… keep “dancing” as fast as I can… I don’t have time for this – whatever this is. Throw back ibuprofen, ignore it, power through, your children/family/job/friends need you… smile, through back tylenol, one more step… just one more step… keep going… throw back ibuprofen. I’m fine. Because I have to be Fine!
Until… I’m quite sure I am not Fine.
Learn. Seek treatment. Research. Find others. Hunt medical professionals who listen, work with you, are knowledgeable, and understanding. It’s a lot of work. And youARE worth it. When one doctor doesn’t work… find another. If that one doesn’t work, find another. There are good ones out there.
Allow yourself to feel… to process, to grieve, to grow. Treat yourself as carefully and lovingly as you would your child. Advocate for yourself. And know… you are not alone. #youneedcommunity
Digesting the social unrest with the vicious and disgusting murder of Mr. George Floyd, the protests, the riots, and the ridiculous and rampant political hate. Everyone believes the same thing, but if you don’t say the ‘right’ words or wear/don’t wear a mask, you are screamed at for being a murderer and racist. There are about 20 idiots in America that are truly racist… but if the rest of us use the wrong wordage, we are screamed at, spit at, called horrible names. “Shut up. Listen. Fight for change. Ask for forgiveness for White Privilege. Don’t ask questions. It’s not about you – you don’t understand.”
So. Much. Hate.
I don’t recognize our country. We are broken. On fire. It’s so painful. And divided – when we need to be united.
I’m trying to learn the politically correct wordage. I’m listening. I am asking questions… that’s how I learn.
But I’m continually sending out my LOVE. No matter how much hate I get. I only have room for LOVE
I won’t sugarcoat… there are moments I begged for a bullet to the brain pan and many times a powerful crowbar strike to the side of my head; I couldn’t be strong anymore. It comes off like I’m kidding. I’m not kidding.
I’m fond of the statement: Tomorrow will be a better day and I have to believe it.
I have never expected the world to change to accommodate my disease, but having a COMMUNITY of support from advocates and other people living with Migraine Disease has made an immeasurable positive difference. I was so alone… and I’m not alone anymore.
Your body has the flu… your head is mimicking Krakatoa… you have stomach flu nausea and vomiting… the world is spinning… light and sound slice their knives into your eyes and ears… and you’re overwhelmed, completely overwhelmed with unspeakable sadness as you’re rendered useless to do the basic jobs you love: care for your family, work your career, enjoy you’re life.
Today I woke up at 08:30. My eyes just opened on their own – no alarm. My sacroiliac was troubling so I thought to take my medicine to get on top of the pain. I can just reach over to my mini pharma night table and grab my dose and sip of water. Settle back and let it work.
I climbed out of bed at about 09:15, disentangling myself from king-size heating pad cords. It’s Sunday, Mother’s Day. I don’t have anywhere to go, but I got out of bed anyway. Because I could. I felt “okay.” Internal body scans revealed most trouble areas were in check.
And because I was okay, I went into the kitchen and fed the dogs. And then, because I could, I cleaned up the kitchen: counters, dishes, appliances – everything was left the night before at the usual level of mess. It was my son’s job to clean up and he did – mostly. About 75% of the job is where my family helpers tend to tap out.
I was still okay, so I made coffee. I looked for a few things I’d need today because my other son and his wife are coming over later. I put them aside for them. And then I took a shower. Because I was “okay.”
My daughter came down to feed her cat. She was cheerful and happy to hear I felt okay but didn’t wish me a happy mother’s day. This did make me smile. Lol. It’s not a holiday my husband has put much effort into ever, so I just basically celebrate myself this day. And that’s alright… because everyday is Mother’s Day! And the relationships I have with my children are as sweet and fulfilling as I could ever dream. I love them with my whole heart… I love who they are – exactly who they are – right down to their annoying habits; I have no expectations on who they should be – I love them. I support them. I want them to find themselves and find their passion and happiness – to give and to receive. And they do not have to do anything but be themselves to overflow my happiness cup.
I’ve consciously (and with the help of years of therapy) decided to shed the baggage I carried for years because of my own mother’s inability to understand love and relationships and enjoy this holiday. To her, it was an annual nightmare of tremendous hopes dashed and expectations never ever met. And we were taught it was our celebration shortcomings that made her feel like shit on this day honoring Mothers. She could see other mothers happy and she wanted that. But she couldn’t figure out how to attain it. Never realizing the key was just gratitude. Not a parade, not a dinner or party, not a special gift, not a certain card… none of that could give her what she already had but could never see or feel.
And why should I carry her baggage? Good lord! I have my own luggage to shoulder and Mother’s Day disappointments is NOT one of them! No, thank you!
After my shower I got dressed… no need to lie down and rest in bed. I was okay… and I got myself a cup of coffee and wished myself a Happy Mother’s Day.
Happy Mother’s Day to me!
And to all the Mothers!
Before making up and drying my hair, I decided this “okay” is SO significant that I should check my logs to see when this has happened before.
• Sept 9 and 17, 2019 I also woke up feeling “okay.”
•Before that, it was May 20, 2019 that I woke up feeling “okay.”
That means I’ve had four days in a year waking up feeling “okay.”
That’s pretty significant. When I wake up feeling okay, it brings it home how BAD I feel almost everyday. Most days I cannot get out of bed until after noon. I cannot clean. Every move is a burden. I am literally too sick to function like a human being. I feel 84, not my spry 48 years. Yes, it’s a lot of pain. But it’s a lot of fatigue, lethargy, aching, brain fog, severe malaise, and more.
So I’m sipping my coffee, applying makeup and my feelings are ping-ponging. I’m so •ecstatic to be feeling okay… to have a modicum of actual energy and symptoms under control. I’m also so •validated: alllll those days… they aren’t something I’ve made-up, they aren’t my imagination, they aren’t related to a diet, a supplement or anything I can consciously change… that AWFULNESS is REAL. And that brings some relief to know I’m not crazy… or doing this to myself. Then, the other emotion I have is •sadness: so much SADNESS… 4 days feeling “okay” (please note that I definitely do not feel good – just “okay”)… 4 days in 365 days. How does anyone even conceive about that level of illness, when much of the time, I can pull off looking Normal?
I’m reminded of the great love story in Pirates of the Caribbean… Will Turner and Elizabeth Swan… they finally marry but Will is cursed to become the new mythical Davy Jones of the Sea. He can only come ashore and reunite with his love, Elizabeth a single day each decade.
Of course… that may be a little overdramatic in comparison. Lol. But as I’m applying eye shadow, I’m thinking of all the incredible things I could do with more “okay” days. I could organize and keep our house clean, read more books, and write more – of my novel, novellas, advocacy work, volunteer for the high school theatre department (they need a part time director), maybe even work a little as a nurse – a phone pediatric triage nurse or a substitute nurse for the schools? I could cook more, exercise more – oh I’d love to take a yoga class! Yoga is my shizzle! I could take the dogs for walks in our darling neighborhood – everyday!
I could garden – I was good with herbs, jasmine and roses. I could plan more events with friends. We could do a family game night every week! How awesome would that be?!
And then… I’m sad again… thinking of all I’m missing in my family’s life. Thinking of the mother my kids are missing, and the wife my husband is missing. They deserve so much more than I can give. I drag them down. Down to Davy Jones’ Locker.
I don’t like to lose my shiny optimism, but it is worth noting that just because I woke up “okay,” it doesn’t mean the reprieve will last all day. Although I do wonder if perhaps my Botox for Chronic Migraine (4/30) and my last Humira dose (5/8) are working and helping me out to “okay-ness?”
Days have a habit of turning on a dime or spiraling downward like tumbling a great long staircase. Tonight may be ice crowns, hot head, screaming piriformis and phenergan. There is no way of knowing – just frequent experience. So for now… I’ll just have my second cup of coffee at noon, make myself some breakfast and enjoy each moment of “okay.”
There are times in life when a simple thank you is just not enough.
I recieved my botox treatment for Chronic Migraine today… I’m only 17 days late, my regular neurologist is still closed… but friends and a different provider went above and beyond, assisting me to make this treatment happen.
Words of gratitude just fall short. I know tonight’s migraine will be from the grateful Ugly Cry. This world is full of so much kindness. Thank you all for your support and prayers. #ChronicMigraine #MigraineAwareness #SpeakYourMigraine #BotoxforChronicMigraine #CMA #ARMS #CMAware
In a world of COVID19, loss, loneliness, chaos, and uncertainty, there are angels among us. Don’t tell me it isn’t true because I have been touched by them. They’ve come into my life: friends who watched and cared for my 4 young children when I had to go to the ER, doctors who’ve held my hand when my baby was hurt, and friends who’ve arranged for another Practitioner to help me with #BotoxforChronicMigraine when my own Neurologist closed up their office and wouldn’t treat their patients in need.
Today I was 17 days late for Botox. In 9 years of treatment, I have never been even ONE day late. These treatments are too critical for me. And Botox is a cumulative treatment. Being late can set you back… like pedaling a bike uphill.
When I put out my open letter to my Neurologist on social media recently, explaining my predicament, heartbreak, and frustration about my botox cancellation, my friends took action. He’s a Pediatric Neurologist and his colleague (who performs botox treatments) and entire office continues to remain OPEN during quarantine. They believe the truth that their treatments and care are too essential. And they are willing to help other Neuro patients – even outside their practice. His wife contacted me with Dr Kate Labiner’s info… she alerted the doctor about my predicament. *cue tears of gratitude*
When I contacted Labiner’s office… they said they were happy to help and they would do everything they could to help me with insurance, payment and appointment times. They were unbelievably kind and gracious. *cue tears of thanks*
Note: I’m a cryer. Happy, sad, funny… I cry. But when faced with grace and goodness… I cry the ultimate Ugly Cry.
The office staff Jasmine and Amanda worked relentlessly on my case… which is difficult – they don’t see my insurance in their pediatric practice and switching the botox authorization from Austin Neurocare to their office was proving to take a LONG time. They didn’t want me waiting and suffering any longer than necessary. Nurse Mary from Austin Neurocare was good enough to fax my info to Child Neurology Consultants of Austin at least.
I opted to pay out of pocket for the visit and injections, for which they gave me a compassionate discount. Dr Labiner also used their samples of Dysport to enable me to get in as soon as possible.
I was emotional to say the least. Their kindness was overwhelming. Whenever I thanked them; they repeated it was their pleasure and they were happy, even thrilled, to help. *cue: tears of grace*
Dr Labiner was delightful… very knowledgeable about Chronic Migraine and we spoke about my history, as well as the CGRPs and overdiagnosis of MOH. Pretty sure she could tell she was talking with a Migraine Jedi. I was able to show her photos of my normal botox “map” and she was happy to follow them. She gave me ice packs and stress balls to squeeze and had me lay down on a pillowed exam table. It made me smile; it was adorable… she counted down before injecting and she asked me how I was doing every so often. I had read up on Dysport beforehand and I did find the injections a bit more uncomfortable (they are slightly deeper, higher concentration where a smaller amount is needed, as compared to botox. And apparently it renders results a little sooner as well.) but totally tolerable. It was one of the most pleasant doctor visits of my life. We talked about her clients… when I think of CHILDREN suffering from Chronic Migraine… my heart can’t take the sadness. *cue: tears of sympathy and heartbreak*
I told her my 20 year old son was an Episodic Migraineur and I would do all on my power to make positively SURE he never become chronic.
We ended the visit with her making sure I knew that I could contact them for help, if needed.
I felt the migraine crashing my skull as we drove home. This is stress letdown. I took my medicine and fell asleep for a short nap (my head elevated). This is emotional exhaustion. This is days and days of uncertainty and anxiety. When I woke up we ate dinner and I cried. And cried. And cried some more. I cried for how grateful I am for this treatment. I cried for all the other Chronic Migraineurs suffering and indefinitely cancelled. I cried for the children who need Chronic Migraine treatment. I cried for my country (and a world) suffering during a fatal global pandemic with a virus that is absolutely devastating that we don’t really understand. And I cried for my anxiety, my mental tension and physical strain, for my stress letdown, and my nasty migraine.
I have my ice on, am in PJs, and go to sleep with a grateful heart.
I am a Covid ICU nurse in New York City, and yesterday, like many other days lately, I couldn’t fix my patient. Sure, that happens all the time in the ICU. It definitely wasn’t the first time. It certainly won’t be the last. What makes this patient noteworthy? A few things, actually. He was infected with Covid 19, and he will lose his battle with Covid 19. He is only 23 years old.
I was destroyed by his clinical course in a way that has only happened a few times in my nursing career. It wasn’t his presentation. I’ve seen that before. It wasn’t his complications. I’ve seen that too.
It was the grief. It was his parents. The grief I witnessed yesterday, was grief that I haven’t allowed myself to recognize since this runaway train got rolling here in early March. I could sense it. It was lingering in the periphery of my mind, but yesterday something in me gave way, and that grief rushed in.
I think I was struck by a lot of emotions and realities yesterday. Emotions that have been brewing for weeks, and realities that I have been stifling because I had to in order to do my job effectively. My therapist tells me weekly via facetime that it’s impossible to process trauma when the trauma is still occurring. It just keeps building.
I get home from work, take my trusty companion Apollo immediately out to pee, he’s been home for 14 hours at a time. I have to keep my dog walker safe. No one can come into my apartment.
I’ve already been very sick from my work exposure, and I’m heavily exposed every day that I work since I returned after being 72 hours afebrile, the new standard for healthcare workers. That was after a week of running a fever of 104 even with Tylenol around the clock, but thankfully without respiratory symptoms. I was lucky.
Like every other healthcare worker on the planet right now, I strip inside the door, throw all the scrubs in the wash, bleach wipe all of my every day carry supplies, shoes and work bag stay at the bottom of the stairs.
You see, there’s a descending level of Covid contamination as you ascend the stairs just inside my apartment door. Work bag and shoes stay at the bottom. Dog walking shoes next step up, then dog leash, then running shoes.
I dodge my excited and doofy German shepherd, who is bringing me every toy he has to play with, and I go and scald myself for 20 minutes in a hot shower. Washing off the germs, metaphorically washing off the weight of the day.
We play fetch after the shower. Once he’s tired, I lay on the floor with him, holding him tight, until I’m ready to get up and eat, but sometimes I just go straight to bed.
Quite honestly, I’m so tired of the death. With three days off from what has been two months of literal hell on earth as a Covid ICU nurse in NYC, I’m having an evening glass of wine, and munching on the twizzlers my dear aunt sent me from Upstate NY, while my dog is bouncing off the walls because I still don’t have the energy to run every day with him.
Is it the residual effects of the virus? Is it just general exhaustion from working three days in a row? Regardless, the thoughts are finally bleeding out of my mind and into a medium that I’m not sure could possibly convey the reality of this experience.
There’s been a significant change in how we approach the critically ill covid-infected patients on a number of different levels over the last two months. We’re learning about the virus. We’re following trends and patterns. We are researching as we are treating.
The reality is, the people who get sick later in this pandemic will have a better chance for survival. Yet, every day working feels like Groundhog Day. All of the patients have developed the same issues. This 23-year-old kid walked around for a week silently hypoxic and silently dying. By the time he got to us, it was already far too late.
First pneumonia, then Acute Respiratory Distress Syndrome (ARDS), essentially lung failure. Then kidney failure from global hypoxia and the medications we were giving in the beginning, desperately trying to find something that works. Then learning that it doesn’t work, it’s doing more harm than good in the critical care Covid population.
Dialysis for the kidneys. They are so sick that your normal three-times weekly dialysis schedule is too harsh on their body. They’re too unstable. So, we, the ICU nurses, run the dialysis slowly and continuously.
They are all obstructing their bowels from the ever-changing array of medications, as we ran out of some medications completely during our surge. We had to substitute alternatives, narcotics, sedatives, and paralytics, medications we’re heavily sedating and treating their pain with, in an effort to help them tolerate barbaric ventilator settings.
Barbaric ventilator settings while lying them on their bellies because their lungs are so damaged that we have to flip them onto their bellies in an effort to perfuse the functioning lung tissue and ventilate the damaged lung tissue.
Lungs that are perfused with blood that doesn’t even have adequate oxygen carrying capacity because of how this virus attacks.
Blood that clots. And bleeds. And clots. And bleeds. Everything in their bodies is deranged. Treat the clots with continuous anticoagulation. Stop the anticoagulation when they bleed.
GI bleeds, brain bleeds, pulmonary emboli, strokes. The brain bleeds will likely die. The GI bleeds get blood transfusions and interventions.
Restart the anticoagulation when they clot their continuous or intermittent dialysis filters, rendering them unusable, because we’re trying not to let them die slowly from renal failure. We are constantly making impossible treatment decisions in the critical care pandemic population.
A lot of people have asked me what it’s like here. I truly don’t have adequate descriptors in my vocabulary, try as I might, so I’ll defer to the metaphor of fire.
We are attempting to put out one fire, while three more are cropping up. Then we find out a week or two later that we unknowingly threw gasoline on one fire, because there’s still so much we don’t know about this virus.
Then suddenly there’s no water to fight the fire with. We’re running around holding ice cubes in an effort to put out an inferno. Oh yeah, and the entire time you’ve been in this burning building, you barely have what you need to protect yourself.
The protection you’re using, the guidelines governing that protection, evolved with the surge. One-time use N95? That’s the prior standard, and after what we’ve been through, that’s honestly hysterical. As we were surging here, the CDC revised their guidelines, because the PPE shortage was so critical.
Use anything, they said. Use whatever you have for as long as you can, and improvise what you don’t have.
As we’re discussing medication and viral research, starting clinical trials, talking treatment options in morning rounds for your patient with the team of doctors and clinical pharmacists, suddenly, surprise! Your patient developed a mucous plug in his breathing tube.
Yes, that vital, precious tube that’s connected to the ventilator that’s breathing for them. It’s completely plugged. Blocked. No oxygen or carbon dioxide in or out. It’s a critical emergency.
Even with nebulizer treatments, once we finally had the closed-delivery systems we needed to administer these medications and keep ourselves safe, they’re still plugging. We cannot even routinely suction unless we absolutely have to because suctioning steals all of the positive pressure that’s keeping them alive from the ventilator circuit. One routine suction pass down the breathing tube could kill someone, or leave their body and vital organs hypoxic for hours after.
Well, now they’re plugged. We are then faced with a choice. Both choices place the respiratory therapists, nurses, and doctors at extremely high risk for aerosolized exposure.
We could exchange the breathing tube, but that could take too long, the patient may die in the 2-3 minutes we need to assemble the supplies and manpower needed, and it’s one of the highest-risk procedures for our providers that we could possibly carry out.
Or we could use the clamps that have been the best addition to my every day carry nursing arsenal. You yell for help, you’re alone in the room. Your friends and coworkers, respiratory therapists, doctors, are all rushing to get their PPE on and get into the room to help.
You move around the room cluttered with machines and life sustaining therapies to set up what you need to stave off death. You move deliberately, and you move FAST. The patient is decompensating in the now-familiar and coordinated effort to intervene.
Attach the ambu bag to wall oxygen. Turn it all the way up. Where’s the PEEP valve? God, someone go grab me the PEEP valve off the ambu bag in room 11 next door. We ran out of those a month ago, too. It’s all covid anyway, all of it is covid. Risk cross-contamination or risk imminent death for your patient, risk extreme viral load exposure for you and your coworkers, and most certain death for your patient if you intervene without a PEEP valve.
You clamp the breathing tube, tight. The respiratory therapist shuts off the ventilator, because that side of the circuit can aerosolize and spray virus too if you leave it blasting air after you disconnect. Open the circuit. Respiratory therapy attaches the ambu bag. You unclamp. Bag, bag, bag. Clear the plug. The patient’s oxygen saturation is 23%. Their heart rate is slowing. Their blood pressure is tanking. Max all your drips, then watch and wait while this patient takes 3 hours to recover to a measly oxygen saturation of 82%, the best you’ll get from them all shift. These patients have no pulmonary reserve.
All of our choices to intervene in this situation risk our own health and safety. In the beginning we were more cautious with ourselves. We don’t want to get sick. We don’t want to be a patient in our own ICU. We’ve cared for our own staff in our ICUs. We don’t want to die. Now? I’ve already been sick. I am so, so tired of the constant death that is the ICU, that personally, I will do anything as long as I have my weeks old N95 and face shield on, just to keep someone alive.
I’ve realized that for many of these patients in the ICU, it won’t matter what I do. It won’t matter how hard I work, though I’ll still work like a crazy person all day, aggressively advocate for my patients in the same way.
My coworkers will go without meals, even though they’re being donated and delivered by people who love and support you. Generous people are helping to keep local restaurants afloat. We can always take the meal home for dinner, or I can devour a slice of pizza as I walk out to my truck parked on the pier, a walk I look forward to every day, because it gives me about eight minutes of silence. To process. To reflect.
I’ll chug a Gatorade when I start feeling lightheaded and I’m seeing stars, immediately after I just pushed an amp of bicarb on a patient and I know I have at least five minutes of a stable blood pressure to step out of the unit, take off my mask and actually breathe.
Every dedicated staff member is working tirelessly to help. The now-closed dental clinic staff has been trained to work in the respiratory lab to run our arterial blood gases, so that the absolutely incredible respiratory therapists who we so desperately need can take care of the patients with us.
Nurses in procedural areas that were closed have been repurposed to work as runners. To run for supplies while the primary nurse is in an isolation room trying to stabilize a patient without the supplies they need, runners to run for blood transfusions.
Physical therapists, occupational therapists, speech and language pathologists being repurposed to be part of the proning teams that helps the nurses turn patients onto their backs and bellies amidst a tangled web of critical lines and tubes, where one small error could mean death for the patient, and exposure for all staff.
Anesthesiologists and residents are managing airways and lines when carrying out these massive patient position changes. Surgical residents are all over the hospital just to put in the critical invasive lines we need in all of our patients.
The travel nurses who rushed into this burning building to help us are easing a healthcare system. The first travel nurse I met came all the way from Texas. Others terminated their steady employment to enlist with a travel agency to help us. Every day there are more travelers arriving.
A nurse from LA came to me after she found out I was part of the home staff, in my home unit, where this all first started in my hospital what feels like a lifetime ago, and said, “I came here for you. For all of the nurses. Because I couldn’t imagine working the way you guys were working for how long you were working like that”. During our surge and peak in the ICU, we were 1:3 ratios with three patients who normally would be a 1:1 assignment. And they were all trying to die at the same time. We were having to choose which patients we were rushing to because we couldn’t help them all at the same time.
The overhead pages for emergencies throughout the hospital rang out and echoed endlessly. Every minute, another rapid response call. Another anesthesia page for an intubation. Another cardiopulmonary arrest. A hospital bursting at the seams with death. Refrigerated trailers being filled.
First it was our normal white body bags. Then orange disaster bags. Then blue tarp bags. We ran out of those too. Now, black bags.
The heartbreakingly unique part of this pandemic, is that these patients are so alone. We are here, but they are suffering alone, with no familiar face or voice. They are dying alone, surrounded by strangers crying into their own masks, trying not to let our precious N95 get wet, trying not to touch our faces with contaminated hands.
Their families are home, waiting for the phone call with their daily update. Some of their loved ones are also sick and quarantined at home.
Can you even IMAGINE? Your husband or wife, mother or father. Sibling. Your child. You drop your loved one off at the emergency department entrance, and you never, ever see them alive again.
Families are home, getting phone calls every day that they’re getting worse. Or maybe they’re getting better. Unfortunately, the ICU in what has quickly become the global epicenter for this pandemic is not a happy place. We are mostly purgatory where I work, so this snapshot may be more morbid than most.
These people are saying goodbye to their loved ones, while they’re still walking and talking, and then maybe a week or two later, they’re just gone. It’s like they disappeared into thin air.
That level of grief is absolutely astounding to me, and that’s coming from a person who knows grief. I was there at the bedside, I held my young husband’s hand when I watched his heart stop beating. I was there. That grief changes you immeasurably.
But this grief? This pandemic grief? It’s inconceivable. These families will suffer horribly, every day for the rest of their lives. They might not even be able to bury their loved one. God, if they can’t afford a funeral with an economic shut-down, their loved one will be buried in a mass grave on Hart Island with thousands of others like them. What grave will they have to visit on birthdays and holidays?
Yesterday, I was preparing for a bedside endoscopy procedure to secure a catastrophic GI bleed in this 23-year-old patient.
It was a bleed that required a massive transfusion protocol where the blood bank releases coolers of uncrossmatched O negative blood in an emergency, an overhead page that, ironically, I heard as I was getting into the elevator to head to the fourth floor for my shift yesterday morning; a massive transfusion protocol that I found out I would own as a primary nurse, as I desperately squeezed liters of IV fluids into this patient until we got the cooler full of blood products, and then pumped this patient full of units of blood until we could intervene with endoscopy.
Before the procedure, I stopped everything I was doing that wasn’t life-sustaining. I stopped gathering supplies to start and assist with the procedure.
I told the doctors that I would not do a required “time-out” procedure until I got my phone out, and I facetimed this kid’s mom because I didn’t think he would survive the bedside procedure.
She cried. She wailed. She begged her son to open his eyes, to breathe. She begged me to help her. Ayudame. Ayudame. She begged me to help him. She sang to him. She told him he was strong. She told him how much she loved him. I listened to her heart breaking in real time while she talked to her son, while she saw his swollen face, her baby boy, dying before her eyes through a phone.
Later in the day, after the procedure, his mom and dad came to the hospital. He survived the securement of the bleed, but he was still getting worse no matter what we did. He’s going to die. And against policy, we fought to get them up to see their son.
We found them masks and gowns that we’re still rationing in the hospital, and we let his parents see him, hold him. We let them be with their son.
Like every other nurse would do in the ICU here, I bounced around the room, moving mom from one side of the bed to the other and back again, so I could do what I needed to do, setting up my continuous dialysis machine, with the ONE filter that supply sent up for my use to initiate dialysis therapy. This spaceship-like machine, finicky as all hell, and I had one shot to prime this machine successfully to start dialysis therapy to try to slowly correct the metabolic acidosis that was just ONE of the problems that was killing him as his systolic blood pressure lingered in the 70s, despite maxing all of my blood pressure mediations.
Continuous dialysis started. You press start and hold your breath. You’re not removing any fluid, just filtering the blood, but even the tiniest of fluid shifts in this patient could kill him. But you have no choice.
His vital signs started to look concerning. I could feel the dread in the pit of my stomach, this was going south very quickly. Another nurse and the patient’s father had to physically drag this mother out of the room so we could fill the room with the brains and eyes and hands that would keep this boy alive for another hour.
She wailed in the hallway. Nurses in the next unit down the hall heard her cries through two sets of closed fire doors. We worked furiously to stabilize him for the next four hours.
Twenty minutes before the end of my shift last night, I sat with the attending physician and the parents in a quiet and deserted family waiting room outside the unit. I told his mother that no matter what I do, I cannot fix this. I have maximized everything I have, every tool and medicine at my disposal to save her son. I can’t save her son.
The doctor explained that no matter what we do, his body is failing him. No matter what we do, her son will die. They realized that no matter how hard they pray, no matter how much they want to tear down walls, no matter how many times his mother begs and pleads, “take me instead, I would rather die myself than lose my son”, we cannot save him.
We stayed while she screamed. We stayed until she finally let go of her vice grip on my hands, her body trembling uncontrollably, as she dissolved into her grief, in the arms of her husband.
This is ONE patient. One patient, in one ICU, in one hospital, in one city, in one country, on a planet being ravaged by a virus.
This is the tiniest, devastating snapshot of one patient and one family and their unimaginable grief. Yet, the weight is enormous.
The world should feel that weight too. Because this grief, this heartbreak is everywhere in many forms. Every person on this planet is grieving the loss of something.
Whether that’s freedom or autonomy sacrificed for the greater good. Whether that’s a paycheck or a business, or their livelihood, or maybe they’re grieving the loss of a loved one while still fighting to earn a paycheck, or waiting for government financial relief that they don’t know for certain will come. Maybe they’re a high school senior who will never get to have the graduation they dreamed of. Maybe they’re a college senior, who won’t get to have their senior game they so looked forward to. Maybe they’re afraid that the government is encroaching on their constitutional rights. Maybe it’s their first pregnancy, and it’s nothing like they imagined because of the terrifying world surrounding them.
Or maybe they lost a loved one, maybe someone they love is sick, and they can’t go see them, because there are no visitors allowed and they’re an essential worker. Maybe all they can see of someone they love is a random facetime call in the middle of the day from an area code and a number they don’t know.
Everyone is grieving. We’ve heard plenty of the public’s grief.
I don’t blame anyone for how they’re coping with that grief, even if it frustrates the ever-living hell out of me as I drown in death every day at work. It’s all valid. Everyone’s grief is different, but it doesn’t change the discomfort, the despair on various levels. We are at the bottom of Maslow’s hierarchy of needs. Basic survival, physiological and safety needs. I’ve been here before. I know this feeling. How we survive is how we survive.
Now that I’ve had the time to reflect and write, now that I’ve let the walls down in my mind to let the grief flood in, now that I’ve seen this grief for what feels like the thousandth time since the first week of March as a nurse in a Covid ICU in New York City, it’s time you heard our side. This is devastating. This is our reality. This is our grief.
Sunday night migraine… 13 days late on #BotoxforChronicMigraine because of COVID19 Shutdown and my neuro’s decision to close the office. 13 days ago at my telemed appointment, my neuro said she’d write me a script for the new migraine abortive med Ubrelvy. It’s still stalled at Austin Neurocare for prior auth and has been for over a week. 🙄 I’m starting down the familiar emotional road of feeling ABANDONED by my neurologist. #abandonedpatient This is an uncomfortable and upsetting feeling.
Never in 9 years of Botox have I even been ONE day late for injections. Botox is cumulative. So there’s a nagging question… with all these delays in treatment, will botox require a few treatments “to catch up” to therapeutic levels? I vacillate between moderate pain and symptoms to desperate despair to embarrassment to glimmers of hopefulness to runaway anxiety to resolve to horrific levels of pain and symptoms where my head is on fire, my teeth are brittle and raw nerves and my jaw feels like steel that might snap. I’m not really “myself.” Just a very solid shadow hanging on by fingertips.
My husband and I just had an interesting exchange tonight…
Me: I was in so much pain before, crying and moaning. Marc: when was this? Me: After dinner. Just about an hour ago. I was laying here in bed in so much misery, rocking, goaning, crying, not wanting to go on, but now the medicine is helping a bit. Did you not HEAR me? You are right there next to the bed! Marc: (scoffs) Oh… I thought you were just moaning in pain… like you used to do when you were in labor.
Me: 😶 Me: Yes… well I’m glad we cleared that up. Sorry again.
(Like I used to do in labor!? Childbirth labor, as in the most PAINFUL experience in the world? And that didn’t alert you that I might be in incredible pain? Or trigger something inside you… like, Idk, an emotion of concern… or care? Just… wow. Okay. Nice.)
If I just died here tonight… it wouldn’t be a bad thing. Migraine at a 5-6 but my jaw and teeth… omg, they are so brittle and in so much clench pain. My head is a thousand degrees. And my sacroiliac is having a tantrum. This is a day I break my own rule and ask… WHY. Why. Why. Why. Why. T storms tomorrow. My roots grow deep here in bed. Love to all❤