I count appointments, small wins, month to month, day by day, because thereās no line we cross or distinguishing number that says weāre ādoneā.
This was originally our 2nd last appt of the year (5 of 6) but on the long ride there – rheumatology called and booked me in on the 20th š
so much for a finish line
But here are some pretty big numbers I was reminded of todayā¦
While crying in disbelief with the nurses that saw me today, hand in hand we reminisced over all those numbers that led me here
Two 10+ hour surgeries
3 minutes flat lined
Over 900days straight of non stop treatments
11 months radio silence – canāt read write speak
12 weeks admitted on the palliative care floor
1 nurse to suspect the medication was the problem
November 2018 – I got my voice back
3 months painful rapid detox that saved my life
NYE 2019 – I wished to celebrate the new year in a gown, in a castle, in the arms of my husband, out of the hospital. Like many others, I got my wish. That was the first of the miracles, we danced the night away with swollen legs, a traumatized body and mind, and a grateful heart.
So much happened from there to here, like the time we sold our house liquidating our life savings and retirement to move me close to the hospital that saved me. Having just been told Iād had a year or less to live and not knowing if that still applied. Being too afraid to ask, life came alive. We figured if I wouldnāt make it to retirementā¦ we would enjoy it while Iām alive to do so. We simulated retirement living at 26 thinking Iād die, so I might as well die fabulously.
Through random Tuesday high tea and pedicures, spontaneous zoo visits, Monday amusement park adventures, spa days, a dream accessible building with a door man and secure feeling, access to all the physio I needed to learn to walk again. Daily swims, walks by the water, in awe and confusion of what would happen. 1 year and a lot of credit card debt later, I even got to swim with dolphins and be proposed to all over again. Life became a dream and a blur – but not in the way Iād been used to. We were just having so much fun not knowing, we embraced the craziness of it all – acting like the rest was nothing but a nightmare. We created our own reality, and in our world – dying wasnāt welcome
It was a fun distraction to just be reckless and not have a care in the world, but we had to face reality.
2019 was an entire year of rebuilding strength, my body and mind. Swimming, rehab, physio, walking, continuous small steps to make sense of something we still didnāt fully understand.
What caused me to almost die?
Yes I have a terminal illness, I have cancer, the tumors are angry adrenaline firing assholes. We get that. But that wasnāt it anymore, we kept being told it didnāt match the symptoms. I knew deep down there was something being missed. It wasnāt the cause of whatever this was
We knew the medication I was being given was shutting my body down, opioids specifically. The very medication I was being given every hour on the hour to try to relieve my pain.
The medication that took my breath away, made my skin peel off my body from the flushing, the medication that instead of relieving pain – caused more.
But why?
First, you canāt take opioid medications with the type of tumors I have – pheochromocytomas are actively secreting tumors. When given these meds, the pain medication creates a similar chemical response in the body. It makes an adrenaline storm
Second, but most importantly – I had an undiagnosed rare condition secondary to the cancer called mast cell activation syndrome or disorder. This explained it all. It put all the final pieces together.
I fought hard and long to figure it all out, with the endless care of my husband, and the guidance of a friend brave enough to speak up to let us know.
The last 2 years Iāve spent eliminating trigger foods from my diet, medications, fragrances, activities, etc. I have implemented numerous routines to heal my nervous system. I am in continuous healing mode, this is why. Iāve had to make peace with the anger, the guilt, the grief. I canāt live in anger that I suffered unnecessarily- I chose to heal.
So I could tell my story from an empowered place
When Iām asked, āwhat did you do different?ā or āwhat was the major contributing factor to your turn around?ā I wish there was one thing I could share to help othersā¦ but we are all different, and itās often not just one thing. Itās a string of events and multiple small efforts that add up to make big impacts.
Iāve done a lot of reflecting, trauma therapy, meditation, inner work, heart work, self growthā¦ and I keep asking āwhat saved meā
I realize now, it doesnāt matter.
I wanted a neatly tied box with a clear answer inside because Iām type A and need to be in control, I have to help others through my pain, it has to make sense. It canāt be for nothing. I canāt let this happen to anyone else.
But whether or not I have the exact answer, Iāve gotten a miracle. Iām here on this earth and my words help others every day. My experience helps others navigate their own much smoother because I have my voice back. My blog will always live as the words I desperately needed to hear when I was suffering. Itās not for nothing, itās so much bigger than I can ever realize.
My eyes are open and I see it every day in the comments, the messages, the questions, the stories of how you were diagnosed because of me. Through your time saved looking for your why, I can accept mine. All the times Iāve heard that ābecause of meā you have answers. āBecause of meā you were able to advocate for yourself and feel empowered, my why is loud and clear. The answers are there, in all of you.
I have and will continue to share what I know on a regular basis. All the info I learn, you learn.
My miracle is our miracle
It doesnāt matter why, what matters is all the days and time and pain that delivered me to this very moment. Walking into the cancer centre today, using my voice to thank those who never gave up on me. Crying and laughing together in disbelief
I came and left holding the hand of the person who fought harder than anyone for me, who didnāt let anyone give up on me or say no, who kept me alive himself with a home breathing machine, doctor cupcakes himself. You were my voice when I didnāt have one, and you kept life ānormalā through all the chaos. You were my miracle all along
As always, I had no idea what would come out of my body when I began writing today. I thought Iād do a brief update and year end health summaryā¦
But for now, all I have to say is this:
I didnāt finish the year with all my questions answered. I still have new mystery symptoms, breast lumps, a thyroid cancer scare, pains and spasms. We still have a ways to go, an urgent mammogram ultrasound and CT to start the year.
If we hadnāt lived through what I just described, Iād be losing my shit having to wait that long.
Today when I filled my oncologist in on the breast lumps found and the urgent mammo request that hasnāt been followed up with – he arranged to have a scan first thing in January.
For now, I feel at peace with everything thatās led me here. I am calm, grateful, and feel in control.
I feel heard, loved, curious, powerful, and excited.
I could be upset about the new year starting with another test, another medical mystery, another scare. But I choose to trust Iāve done all that I can do, embracing the unknown.
I canāt think of a more powerful way to finish the year, stable, and leaning into this new found glory.
It took a while to get here, Thank you for believing and making space for me to heal against all odds. Letās finish the year strong, what do you say we do something really crazy?
Letās just be normal for a while, k? Iām not going anywhere, I promise. We can chill on the helicopters for a bit. Hereās to aā¦normal-ish year
Well, a fabulous normal! šš
Love you all, drop a question, tell your story, join me on Instagram and tiktok. Stay connected and most importantly stay fab
What is global NET CANCER DAY? What does the āNETā stand for?
NET cancer day is recognizing all āneuroendocrineā type tumors and cancers. Meaning the tumors arise from the neuroendocrine cells in the body. NE-T stands for neuroendocrine tumor and NE-c is neuroendocrine cancers.
This day brings us all together to push for change in the diagnostic process. It provides a global effort to inform patients of what symptoms to look out for.
The NET CANCER DAY campaign is to
KNOW THE SYMPTOMS.
PUSH FOR A DIAGNOSIS.
As someone whoās been touched by this disease since my teens, I can say from experience that these efforts have made a huge impact. As patients we provide the most intimate knowledge of these conditions. Itās us that the health care professionals learn from, through trials and medical journals, itās our experience that is providing up to date info.
But as everyday people, we are making CHANGE. By telling our stories, sharing what symptoms led to the diagnosis, types of imaging we had, challenges we faced with diagnosis, surgery, follow up, recurrence. It all helps others to better navigate their own unique NET CANCER experience.
I wanted to take a moment to recognize those who are navigating this complicated illness on the daily
The patients who are having to work so hard to know the symptoms, push for a diagnosis. Doing our own research, finding support groups, knowing whatās outdated information. Creating medical resumes to explain our complex needs. Learning how to advocate for yourself medically isnāt easy. Keeping our health care providers up to date. All while trying to fight the disease and live through insufferable symptoms. It can feel like the world is on our shoulders, but know thereās a herd of zebras ready to hold some of the weight – anytime.
The caregivers who are pushing on our behalf, hiding the fear by fighting for us. Advocating right alongside us. Telling their loved ones story, joining the groups, doing everything they can to learn how to support their zebra.
The physicians who are taking the time to make change, stay informed, look for the zebra š¦ the physicians who simply believe us
The nurses who hold our hands and are kind to us through long hospital stays. Taking the time to learn how to better care for our unique needs.
The specialists who treat us, who dedicate their life to improving diagnostic measures and overall care. We need more physicians like you!
The pheo para alliance for providing a safe landing space for pheochromocytoma and paraganglioma phamilies. Their mission to provide up to date information, create excellence centres, and make change within this community. Working with physicians around the world to provide better diagnostic measures and specialized care. Offering patients support through awareness, webinars, physician led discussions, patient led discussions, and just knowing there are other pheo para zebras out there.
The international neuroendocrine cancer alliance (INCA) for leading the charge on NET CANCER DAY. Providing up to date information for ALL types of neuroendocrine tumors and cancers. (NETs & NECs)
The neuroendocrine cancer awareness organization (NCAN) for the NET cancer community. Providing resources to patients and conferences to keep the community up to date. Fundraising and sharing the zebra stripes around the US
The carcinoid foundation for providing all types of resources and support for neuroendocrine patients. Their āfind a doctorā holds an international database of specialists needed for this disease based on area of expertise and location! example of Canadian specialists listed below šš»
On behalf of everyone touched by this disease, THANK YOU! THANK YOU! THANK YOU! Thank you to everyone for doing their part in creating change.
Iām still alive today with metastatic pheochromocytoma (a form of net cancer) because of awareness days just like this. This is how we make change within the rare community! This is why I will continue to tell my story and share any knowledge I know! š¦ WE ARE STRONGER TOGETHER! #zebrastrong
HIGHLIGHTS & INFOGRAPHICS
I am so proud of the information I have been able to create and share this year. I will include all of the projects and infographics for this yearās campaign so it can be revisited when needed!
š«BENIGN VS MALIGNANT š«
This is first and foremost one of the most common mistake I am still hearing when it comes to pheo and para tumors
Why is this information dangerous? When we hear benign we often sigh a breath of relief and think itās less serious than its counterpart: malignant
But itās not. The reason why they changed the wording when it comes to these tumours is because thereās no way of šÆ knowing if they are malignant under a microscope š¬
Because of this, many patients (including myself) have been told their initial tumor is BENIGN. Which leads to a false sense of security around recurrence, and misunderstanding when it comes to the need for lifelong follow up
It removes the risk and concern for recurrence, which is high by the way. And itās just outdated and simply put – wrong
If you are still hearing this term being used, call it out. Offer the up to date info to provide it to the physician for their records. If you see it being said at a healthcare centre, email them with this updated info.
NET PATIENTS, please ensure you have yearly follow ups. Including new labs and scans if you are symptomatic!
Fighting Pretty (a non profit supporting women through cancer) helped spread the word with this feature and a special mention in their newsletter. Since being the first rare cancer that joined the fighting pretty community, they created ZEBRA gloves of strength to help continue share awareness through empowering stories everywhere.
Fighting pretty wrote:
We stand with all of the beautiful Zebras within our community. š¦šŖ Join us in spreading awareness about NETs by sharing this post to your story and be sure to follow Miranda for more inspiring content! š
PHEOVSFABULOUS INFOGRAPHICS
For my complete pheo attack survival guide, click HERE
NET CANCER DAY LIVE 2022
We welcome you to watch the replay here. We shared about our own experience while offering tangible ways of supporting your loved one. All while embracing your new normal š¤
net cancer day graphics
Thatās a wrap for this year phriends. There was a lot of information shared in one day. I hope you are able to get some good self care in after all that!
Feel free to save and share any of the graphics here
I encourage you to send this blog to loved ones to keep them up to date, along with any other info that resonated with you.
I feel like I have so much to discuss since yesterdayās appointment, so here we go. NET CANCER DAY has really got me thinking a lot about how much responsibility falls on us as the patient. Iāve always known this, and I often discuss how the information I share relies on us (the patients) to advocate for themselves in an unbelievable way
Iāll be giving a bit of a health update, while sharing how I prioritize multiple symptoms and conditions
The difficulty of living with more than one health condition is having to navigate which is most urgent. This can be dangerous and counterintuitive for the overall picture and quality of life for someone with chronic disease.
I went to see my palliative care doctor, who is also my family physician. Those of you who know our past with palliative care has been rocky at best.
Anyway I like her, I trust her, and she was the only one we continued with for my local care.
There was a lot to go over, and so already that can be overwhelming for both of us.
I typically talk about my concerns in order of urgency. I also try not to be rushed and I do make an effort to lead with what Iād like to prioritize.
discussing multiple concernsā¦
Normally doctors appointments begin with going over whatās happened since last time. This ends up taking up the bulk of the time, leaving little room for whatās currently going on. Honestly I had too many new issues of concern to discuss so I quickly dived in, not leaving room for previous updates
First I had to address my breast health, she did a thorough exam and agreed with my self exam findings. She ordered a mammogram and marked it urgent. Good that itāll be quick, bad that itās considered urgent. I requested there be an ultrasound with it due to my age.
I wouldnāt have known to ask for ultrasound with it if not for so many #breastfriends sharing their stories. I always āfeel it on the firstā and that helped me to identify when something felt different.
I had brought up my concern at my last appt with a resident before seeing my specialist. I wasnāt laying down when she did her super quick āexamā and if I had relied on her āthereās nothingā I wouldnāt be having this investigated at all. You can see the importance of self advocacy in ALL medical situations. Following your gut instinct and pushing for answers is essential for your health
Young womenās breast health requires a different approach, and so ultrasound is recommended as a supportive measure. We talked about the possibility of a breast MRI as well, but are starting here. I am used to not reacting before something is actually real or concrete. Still a little scary tho!
With #netcancerday on my mind I informed her of the high rate of NETs that can be in other parts of the body such as the breasts (always an advocate!)
I will be referred to a dermatologist for some issues with the skin also. She suggested the use of antibiotics to try and relieve the recurring skin issue I have under my breast. I declined, as I reserve antibiotic use for EMERGENCY matters.
My medical resume came in handy at this appointment as she asked which medications I cannot take or am allergic to. Sometimes we think we donāt need these resources because itās a doctor we are used to or not a big deal. ALWAYS bring your medical resume. I was able to hand her the sheet of contraindicated meds with mast cell activation disorder. You can find that here
It was feeling like a lot already at this point, but there was still other matters to deal with. We discussed the progress or lack thereof with my painful twitching and spasms. My upcoming MRI for the brain to investigate further and how I didnāt vibe with the movement specialist š but I quickly veered back to the current unresolved issues at hand. Breast, lymph, feet. Like a mantra in my mind, making sure I didnāt forget what Iād come for
I asked about the possibility of lymphedema in my left arm, since itās never been brought up at a single appt for the last several years. She looked at both arms and immediately saw a difference in size. I pointed out how the skin sort of puckers inward and how itās always been very painful to do blood pressure on the left. She agreed with the strong possibility of lymphedema. I asked about the possibility that it can be impacting my abdomen as well since Iād had such an extensive de-bulk surgery. She said sheās never had a patient with it but itās a possibility
Iāll be referred to a local lymphedema clinic.
Last, I brought up my chronic foot pain. I explained that this one really has me worried and I donāt have any idea what it could be in relation to. Things like this are always a bit tricky because we have to ask if itās related to my existing conditions. I havenāt had any luck connecting the dots in the patient community. My endo tried a complex B vitamin to see if that would help, but Iām still having the issue.
First thing I am asked with each concern I address āhave you talked about this with your specialist?ā it happens every single time. Each doctor asks if Iāve talked about it with someone else.
I get frustrated because when Iām at my specialistsā¦ they need to focus on their specialty! So they often ask if I have a family doctor. With complex medical issues and multiple concerns, thereās a lot of ping pong as I like to call it. Which is why I often bring up the most urgent issues to each doctor. I then see whoās willing to help or what their opinion is. It allows me to get multiple opinions and saves everyone time
I do get a bit tired and upset when itās always me that has to find everything. I try to think back to a time the onus didnāt fall on me to find answers, I canāt recall a time that it wasnāt like this.
A lot of it boils down to 2 things, when you are rare and medically complexā¦ we deal with order of urgency. Which means the less urgent matters gets swept aside until thereās time to deal with them. But thereās never time, so you have to eventually make it a priority. PAP tests, womenās health checks, and regular labs for vitamin and hormone deficiencies are often not done.
A lot of the sweeping aside ends up turning into bigger issues later on. It can become the things that impact our quality of life the greatest. Ignoring small issues adds up into big problems. It ends up being what creates other advanced issues due to lack of treatment or care early on.
For example, my endometriosis diagnosis had been put off until last year. It meant not doing regular PAP tests, because I am treated palliatively. I was asked verbatim āwould you really want to knowā¦?ā meaning: do I really want to know if thereās something else wrong?
Iād like the opportunity to deal with whatever is going on with my body. Putting my head in the sand saying āIām guess Iām dying so LALALLALā thatās an unhealthy and incorrect approach to palliative care or ANY care for that matter
By the time I got answers I had been suffering with unimaginable pain for over 10 years. Pain that was always blamed on the cancer. I was diagnosed with advanced stage 4 deep infiltrating endometriosis. It canāt be cured or surgically removed. I have to just live with it and try to manage the spread with hormone therapy AND pay out of pocket for uninsured pelvic floor therapy to manage pain. So you see, these ālesser issuesā can wind up being what impacts your life and pain levels greater than anything else
Quality of life improvement for me means taking care of root cause issues and treating what needs to be treated. We can live long lives with reduced pain
So this is where Iām at currently with just the appointment from yesterday. I wonāt know what my cancer is doing or not doing until later in the year – as those labs take a long time. I will have to get imaging in the new year so we wonāt have an up to date look into that until 2023 for now.
This is why I am prioritizing all these other concerns. While putting a focus on improving my baseline health. I put a constant effort into regulating my nervous system, managing stress levels, and doing daily healing practices of my own
I do what I can with whatās in my control, I realize I am doing a lot at once and itās time to be patient. So I can begin to see the results of all my efforts.
I got upset yesterday seeing that I am rapidly gaining weight with no cause again. This becomes an issue because itās happened many times with no answers as to why. Unexplained weight gain is often hormonal, but that doesnāt narrow it down for me. We know itās because of the excess stress hormones – but In 12 years no one has been able to identify which. Why it happens suddenly when it does, and so Iām determined to do it myself. With the next round of labs I will be able to see which level has increased.
I will also request to have my inflammatory levels checked, insulin and leptin resistance, hormone deficiency, food intolerance, and vitamin deficiencies. Any and all things that can be related to weight gain. I had requested (non specific) labs to be tested with her, but she refused on the basis that we need to have a specific reason we are looking for. Or else they can find issues we werenāt trying to find, which I just think is ridiculous. If you have an incidental finding it should be seen as positive. Itās not as if weāre looking for fun without any cause. So fun, right?!
In the meantime, I am reminding myself I am doing what I can. I am doing my best. I wish that someone had told me sooner in my journey to stop focusing on trying to control the things that are simply uncontrollableā¦
And put focus on what I can
For example: if my body is rapidly changing, creating more resistance by fighting back with restrictive eating and unhealthy movement is dangerous for me.
Instead: learn to love my body in all forms through self compassion and patience. Relieving the pressure and stress this causes until answers come, allowing me to be at peace and letting things just ā¦ be
The lesson I am taking away and am sharing with you is that self advocacy is a powerful tool. It can also be overwhelming, exhausting, and feel like a lot of responsibility.
There are times when we have to loosen our grip a little and let the universe, let god, let our bodies, let be.
We have to put a bit of trust into something other than ourselves. Thatās what hope allows for, faith, and mindful practice. Itās a delicate balance for our own good and emotional well being
I love hearing from you, you can connect with me:
For daily updates follow my Instagram account: pheovsfabulous
You may have heard this term before, maybe even more so recently. Maybe itās happened to you, itās not something new, but rather something thatās being acknowledged and talked about more.
So what is medical gaslighting?
(gaslighting) ā the repeated denial of someoneās reality in an attempt to invalidate or dismiss them ā is a form of emotional abuse.
(Medical) gaslighting happens when health-care professionals downplay or blow off symptoms you know youāre feeling and instead try to convince you theyāre caused by something elseāor even that youāre imagining them.
It can sometimes be tricky to identify when itās happening, sometimes itās a clear refusal to treat or acknowledge a patientās symptoms. Sometimes they will acknowledge the symptoms but not want to treat you. However, it doesnāt always happen through words. Some examples of non verbal can happen through: prolonged silence, a condescending sigh, sarcasm, a tone of disbelief or disapproval. None of which will be noted in your medical file, only imprinted on your heart and in your mind. When replaying the events, and asked āwell what did they say?ā You may not be able to recount a time that they ever outright told you that youāre over-exaggerating, only you will have felt the dismissal through those non verbal communications. You will leave with no answers, more questions than when you began.
After this happens to us, we often leave questioning our own reality regarding our condition, which can lead us to not wanting to talk about the severity our symptoms anymore, or at all. Leading to a prolonged diagnosis, and danger to our ongoing health.
Which leads me to why Iām speaking out about it. Most of you know me for being an advocate for rare cancer, and more so, always having a positive outlook or spin on tough situations.
Talking about a tough situation doesnāt make me less positive or weaken our strength, it empowers us with the ability to move forward with our same positive outlook. I donāt want any one situation to disable my ability to speak for myself, advocate for myself, or cripple me with fear. For quite some time, this was the case. The moment I sensed it was happening to me, I would just freeze. I couldnāt speak, Iād instantly get emotional, and I would be filled with fear that Iād be dismissed and get sicker all over again. I wouldnāt want to repeat the events so I too would diminish the severity of my symptoms.
Why? before I knew what the term āmedical gaslightingā meant, before I even heard of it, it happened to me for years unknowingly. My clear symptoms being blown off as anxiety by my specialist is what led me to receiving an incurable advanced stage diagnosis of metastatic pheochromocytoma.
Iāve come a long way from that period, and Iāve used it to learn how to fiercely advocate for myself. To know what type of care Iām entitled to, and to know my rights when it comes to my health. Sometimes, it just takes ONE situation to make you feel like youāve gone backwards. By sharing, this is me taking the step to go forwards and hopefully empower you to feel the same.
I just want to be clear, my current team of doctors and specialists are I-N-C-R-E-D-I-B-L-E. The problem is, during an emergency, you canāt always wait to see your specialist or main doctor. Sometimes, we require emergency careā¦
My chest is heavy as Iām writing this, I didnāt realize how hard this was going to be. Regardlessā¦
Iām going to share about what happened a couple of nights ago when we had to go to emergency.
I was having a great day, I felt better than I had in a long time. I was relaxed and going to work on a DIY wreath. I suddenly felt a āpinched nerveā type feeling in the right side of my neck. So I decided to just relax for the night and watch a show. I got extremely weak and felt overcome. Then a sudden headache hit me. I wasnāt sure if I was going into some type of flare, so I took the necessary medications when that happens. Still no change, so I went to pick up my phone and record a āstoryā post to say I wasnāt feeling well. When suddenly I noticed that my eye looked strange. One looked enlarged and had a weird glare, my pupil was misshaped, my eyes didnāt match! I was sure it was the video, so I took a photo. I had never experienced this before, I asked my husband to look and he confirmed one pupil was much larger than the other. I went in the bright light of the bathroom, both pupils returned to a smaller size. I stepped back out into the dim lit living room to re-check, and they then went two different sizes again. Then they just stayed like that. Of course I knew this could be a number of things, but since I had no history of it happening, a sudden change like this is worrisome.
One pupil larger than the other
I sat there weighing my options:
Go only if it gets worse (potentially too late if itās a precursor to a neurological event like a stroke or aneurysm) ORā¦
Go right now while I can still speak clearly for myself and donāt require emergent complex care
When I go to emergency, like most chronic disease patients, it has to be for something BIG. Something that I have no power to treat myself, something that canāt wait until tomorrow. It often takes multiple people and specialists to convince me to even go.
This was a time where I certainly couldnāt know the seriousness of the event myself. I also couldnāt risk going to sleep and waiting to see my doctor. My thought was: Iāll never forgive myself if I donāt go get checked and it gets worse before tomorrow. Put on your big girl pants and GO, Miranda.
So thatās what I did, I grabbed my hospital āgo bagā and all of my supplies needed to speak for myself if Iām unable. My medical ID bracelet, medical resume which outlines my conditions, allergies, and life saving emergency room protocols in the event I go into crisis. We began mechanically preparing for something weāve done hundreds of time. Knowing that it can either go extremely well, orā¦.. the opposite
My local emergency rooms have been experiencing extreme understaffing, and even close the emerg 3-4 times a week. Even before covid, Iāve not had the best experiences. So we made the decision to drive 1 hour from home to a hospital that I had never been. A blank slate, I felt good about it, and knew it would not be filled with people and covid cases since itās a very rural hospital.
We arrived to an empty parking lot, an empty waiting room, not a soul in sight. At first we thought this was a good thing, no worries of getting sick or having to be isolated. Low wait times, and all of the care directed towards me since Iām the only one there. High five!
Empty emergency room
I was triaged right away, my husband who is my primary caregiver couldnāt be with me due to covid. So I explained everything that had happened in detail, and added that I have a very rare cancer with some secondary conditions. All information is relevant when visiting emergency, itās not up to me to decide what they need to get a clear picture. So I give them the basic facts needed for this visit and let them ask the rest.
I was immediately called, to where I was met by a nurse who immediately told me to go into the exam room. I asked if she had been informed of my emergency protocols that the triage nurse took copy of, *if I am going to have to be alone in a room without supervision in a hospital with no one aroundā¦ for my own safety I have to know that if Iād go into crisis, they know how to respond properly. This is something I have to bring up any time I will be alone, or when Iām at higher risk of crisis. Since I canāt be treated with an epi-pen and thereās conflicting conditions, itās not something I can choose to leave out.
She responded with sarcasm that No, she was not informed in the 30 seconds it took to call my name.
I laughed and replied that I get it, my bad! I then proceeded to explain WHY itās necessary for all of us to be on the same page and that my protocols are designed for emergency room settings by my specialists to outline how to treat my specific case IF any of the following happen.
She cut me off mid sentence and said āI REALLY donāt careā and stormed out of the room. Leaving my husband and I to stand there and wonderā¦ is this how the rest of the night will be?
He instantly reassured me āwell, sheās just one person! The doctor will be niceā and I was just grateful that he could be there to be the one to respond IF anything should change with my health. He has all of my injections and medications with him at all times, and knows better than anyone the signs of when to use them.
The doctor came in without introducing herself, and began the norm of asking about why I was there. I started with my eyes, being the main reason I had come in. And then followed with the precipitating symptoms that made the eye issue more worrisome, the neck and head pain. I began having trouble explaining myself, so my husband added the time of when it all began to help me out. She abruptly looks at my husband and says āso she canāt speak for herself? Youāre here because she canāt speak on her own? Youāre here to speak on her behalf?ā
Not that I need to defend this, but yes. My husband literally is there for when I canāt speak for myself. Stress makes it sometimes impossible for me to get a clear speech, I can be fine one moment and then unable to speak or think clearly the next. Itās happened many many times, and itās the most terrifying thing to happen to a person. Especially when surrounded by strangers.
I then spoke for myself, answering to why he is there. Explaining what I tried to explain to the nurse. I was preparing for the chance that if I had to be kept for observation, they would understand the severity in which my health can change. From one second to the next, which is why itās essential for everyone treating me to read and understand the protocols. IF anything were to happen, it needs to be decided within seconds. Those seconds are what will make the difference between life and death.
Rather than asking me more about it or if itās happened before, she replied by saying āso then we can do that for you. He doesnāt have to be here, if anything changes we are capable of knowing if you canāt speak. Or do you think we arenāt capable?ā
I could already know by the clipped tone, sarcasm, and tension in the room that I was no longer comfortable. This is the very beginnings of my exam, and we havenāt even begun to speak about WHY I am there. I didnāt feel confident in the surroundings, if you put yourself in my shoes. I have a rare condition thatās already often misunderstood, and require a basic level of understanding in order to be safe. If this level is not met, I am not being left in the care of people who are responsible for my life.
I didnāt want to argue, so to avoid putting fuel on the fire, I calmly explained that Iām not questioning their capability. Itās just if Iām alone in a room, and it happens within seconds, in the event Iām unable to speak, logically I canāt ask for help. I canāt call for assistance, so yes, my husband IS in fact there to speak for me in the event that I cannot.
What happened next is what truly caught me off guard and I knew I wasnāt going to be able to stay there should I absolutely need to.
I wanted to get back to the point of why I came to emergency, and have a proper exam for my eyes. So I redirected the conversation and said ācan I tell you why Iām here?ā She threw down her clipboard and replied āI HOPE you know why youāre here, they woke me up in the middle of the night for this!ā
In that moment, I lost all hope for a decent exchange. I was made to feel that I was inconveniencing everyone, that my issue clearly didnāt warrant an emergency. I pushed through my inner voice telling me to just leave, and reminded myself that if I leave without so much as an opinion I will be right where I started. I will have to re-do this at another emerg, and I have a right to proper care. I reminded myself of what I preach, and decided I wonāt let this stop me from what I came to do. Ask for help, receive care from the people who are there for that very reason.
At this point she began a basic neuro exam, repeating the questions about what brought me in. Each time she repeated her question, it was said in a more condescending way. (Non verbal cues) she began mixing the order of what I had told her. The neck pain, followed by the sudden headache, and then the pupil dilated. I corrected the order, to which she replied āso you had a headache and you took a Tylenol and it got all better? You took an Advil? A Tylenol? A motrin? What did you take?!ā(No where did I say I took anything for my headache) āokay so then your headache wasnāt bad enough to take a Tylenol AND it went away?ā
No, I just donāt typically take TYLENOL for my type of headaches. I take a steroid or an antihistamine depending on what type of headache I think it is. This exchange continued on for a bit, the accusatory tone, the trip me up questioning. All of which I endured to get a proper response about why I had come.
My husband patiently waited to interject and let her know that Iāve had two previous strokes. Which is why we found it of urgency to come in and get this checked. We wouldnāt think of coming to the hospital unless itās an EMERGENCY.
She didnāt seem to find it very concerning, instead she asked me āwell why isnāt THAT in your chart then, if youāve had a stroke, wouldnāt you include it in here?ā
I was caught off guard and stunned, so he replied for me. āIt happened before her adrenaline was controlled, before she was diagnosedā I always include my most current conditions, because a lot has happened and I canāt fit them all on one page, I donāt think I could fit them in one book let alone a page.
I went along with the touch your nose then my finger game, walked a straight line, and āpassed the examā.
She then began to finally explain that they donāt do labs at night, she canāt take my blood, she canāt do a scan, they donāt do anything in the night hours. They are there for emergencies only. A-ha, finally. The confirmation that I am not by their standard an āemergencyā. Okay, see ya!
But then ā¦.āeven if I DID do a scan, it wonāt tell me anything because youāre not symptomatic anymoreā
Me: āokay, soā¦ if thereās nothing we can do, do I just go home?ā
Doctor: āwell, we can keep you to observe you to see if it happens againā
Me: āokay and if it doesā¦, thatās when we would do tests and a scan?ā
Doctor: āwell maybe, MAYBE in the morningā
Me: āso if it DOES happen again, what would you do?ā
Doctor: āwell like I said we will just monitor you and see if it doesā
(Still unclear as to what that will achieve if theyāre unable to do blood work or imaging)
Doctor: āI mean youāre fine now, your neuro exam is fine, youāre not having the symptoms anymoreā
Me: āokay so I can just go home then? If thereās nothing, I can monitor myself and go to a hospital if it changes?ā
At this point sheās said Iām fine more than once, made me feel Iām there for nothing, that thereās nothing they can do at their facility to look further into it. Itās not a guarantee that they will do anything further even when they ARE able to. So the logical conclusion is that I go home and wait for something more to happen and seek care IF it does. If not, see one of my doctors in regular clinic hours.
The doctor then says āokay, well Iāll give you two some time to decide what YOU would like to doā
My husband and I are sitting there looking at each other with the same thought, why are WE (the patient) being told to decide what should happen? Is it to not be liable if something does in fact happen tonight? Either way, at this point you couldnāt have paid me to stay in their care. So I got dressed, and we firmly decided to go home and sort out another plan of action if we could make it through the next 4-5 hours till the doctors open up.
When things changedā¦
She returned into my room, me fully dressed, standing ready to leave. I thanked her for her time, and proceeded to explain Iād feel safer being at home and will go to a bigger hospital if the symptoms return.
She was completely stunned, which surprised us, now her whole demeanour changed, her mindset, her outlook on my current āconditionā. She began back peddling and referring to me as a stroke patient. (What?!) she never once mentioned the risk of stroke, even though thatās EXACTLY why I came in the first place.
The entire time I had been there, I was made to question why I was there. That I wasnāt an emergency, not even a brief talk about what could have caused it. The entire exchange was bizarre, and downplayed to the point where of course it made more sense for me to go home and seek an alternate opinion.
The very same doctor then began to speak with more urgency about how I can be fine at this moment, but the same āneurologicalā event that brought me in can happen again and again until POW! āThe big oneā happens. Referring to mini strokes and then a large stroke. To which maybe it will be too late to go to the hospital.
Stunned, confused, and curious, I asked: āsoā¦. If I stayed, and you monitor me, and even if the ābig oneā happens, what would you do?ā
Doctor: āwell we would still have to ambulate you to the other hospital that could treat you (an hour away where we live). But I still wouldnāt send my stroke patients there! If I had a choice, Iād send them to the civicā (by which she means a larger teaching hospital in a different province) but since itās a different province, I canāt do that. So Iād have to send you to the other hospitalā
Me: āokayā¦ well, our home is much closer to that hospital compared to here. We are just minutes away VS the hour it would take for you to get me there. So for me it still makes more sense to be home, and that way we can make a choice depending on the severity whether we ambulate there or jump in the car to the civic across the bridgeā
Doctor: āif you stay here we can monitor you and maybe do a scan in the morning, I see youāre allergic to ādyeā (meaning my life threatening allergy to iodine) but I mean if we need to do a CT under emergency we will ājust do itā
Me: āummm, you canāt just ādo itā when someone has a life threatening allergy to iodine. This is is one of the reasons Iām safer at home. If you were to administer iodine even by error, you canāt give me an epi pen when I go into anaphylaxis. THIS is what I tried to explain in the protocols earlier, to you AND your nurseā
Out of curiosity, I then asked āwhat if I just went to the civic directly now and have them do the scan? Oh right, you said they wouldnāt see anything anyway right?ā
*crickets* ugh.. ughā¦ wellā¦ not necessarily
Like, Iām sorry, but why scare me now? I had been here for an explanation or a severity level of how worried I should be the entire time. To which I was made to question why I was even there and scolded for waking you up. But only when Iām walking out the door, thatās when we get berated about the danger of the situation? Suddenly Iām a āstroke patientā? Suddenly everything changes? No. I wonāt be roped into this ping pong match. I wonāt continue these mind games. I am standing my ground, and I am leaving. I am getting far away, and I will not be made to feel that I AM the one whoās doing something wrong.
The aftermathā¦
Everything about this entire experience was wrong, and the one thing I do have the control over is where I go and when. Right now, Iām going to where I am safe. Home. Within closer proximity to hospitals should I need to go. I will be under the care and supervision of my husband who knows my vitals and cues of when thereās something wrong. I will be safe
As we left the hospital, I again thanked them for their time. I gave grace and understanding that wasnāt deserved, I allowed more room impatience due to the pandemic. I wanted to start and finish by being kind regardless of how I was treated in return. Still, I couldnāt help but leave feeling more confused and scared then when I first came.
That confusion was followed by anger, and outrage. WHY did this happen again?
Iām nice, Iām calm, Iām organized, I provide all of the facts, I am a great advocate, I have logic, I donāt quote google, I awaited every opportunity to be examined and so badly wanted to be given the clear or some type of explanation as to what had happened to me. Instead I was made to feel my symptoms were nothing at first, it was downplayed, dismissed, and then confused even further when suddenly it became a big scary thing. It made no sense
I arrived home, and within 20 minutes, and in the dim light, my pupils became different sizes again. I wondered to myself, why didnāt she do my eye test in different lighting based on what I told her? I was so exhausted at this point, I took another photo, and decided Iām going to sleep.
We made a plan as to what we would do in the event of the āwhat ifāsā. My husband stayed up all night doing checks, and we made it to morning.
I was so exhausted yesterday, just mentally exhausted from the whole experience. I slept until 8:30pm last night. I was proud that I stood my ground and left, but couldnāt help but wonder what we would have done had my current condition been more unstable.
This isnāt the first time something like this has happened to us, and Iām certain it wonāt be the last. Yesterday my husband spent the morning and afternoon contacting every doctor I have to get their opinion on how to proceed. Who to get help from, etc.
Most of the answers pointed towards neuro. So we arranged an emergency appt with my neuro, and we just spoke on the phone. I explained the situation, he congratulated us for knowing so much. For doing the right things at home, for documenting how the eyes respond in different lights, for being able to tell the story with such a good recount. All of which led him to ordering an MRI of my neck and head right on the phone, focusing on the artery in my neck. (The pinched nerve I felt at first) after discussing, he quickly realized itās most likely not the eye that was larger thatās the issue, but maybe the eye that is smaller: based on the clues I gave about both eyes constricting while in bright light, but then one going larger in the dim light. He said itās normal for eyes to go larger, but itās NOT normal for one to constrict. So the opposite eye may be the issue, the one that stayed small. See?! Doctor/patient team work at its finest.
I wish I had a clear explanation as to what you can do in the event that this happens, but itās very situational. One major thing I want to make clear:
Never feel pressured to stay somewhere that you are not comfortable.
Never feel you have to do anything you arenāt comfortable doing
Never feel you donāt have the option to get a second opinion
Never feel that you arenāt entitled to leave and seek help elsewhere
If itās unsafe to leave, but you arenāt comfortable in the care where you are, you can request a medi transfer to another hospital who has the means to treat you.
The reason Iām sharing this is to let you know that it can happen, and you have every right to feel outrage. We have a right to proper care, and not be made to feel as if weāve done something wrong when seeking medical attention
Emergency situations are a bit more tricky depending on the severity of your condition, but as I said, IF you arenāt feeling heard or safe, but canāt leave that hospital, please reach out to the patient advocacy number for that hospital and get help.
I was fortunate in THIS situation to be able to speak for myself, to have someone I trust with me to validate what happened. To confirm itās not just āin my headā. But if you donāt, share within a patient support group. Anywhere that you can get support and be reassured.
Above all, please donāt let this prevent you from seeking medical attention when needed. I was so hesitant to go to the hospital a couple nights ago, and all of my fears were confirmed despite how prepared I was, despite how kind I was. But Iām not letting that stop me from getting the care that I require to keep me safe and THRIVING.
I have no answers just yet about why my pupils did this, and whatās going on. But I now have leads, we have made progress, and will eventually get answers. Through our own advocacy efforts and reaching out to the patient community with similar conditions, someone was even able to suggest a syndrome that made sense to my neuro. THAT condition is now being investigated, all because of sharing and asking questions. Using technology!
I imagine Iāll have to do a lot of tests that will uncover nothing, some that will eliminate a cause, and eventually one that will uncover it. I however will not stop until I have an answer.
By sharing this, itās my therapeutic release of letting it go and not giving it power over me. My illness isnāt going away, so I need to be confident and able to speak when I can for myself.
I hope in some small way if something similar has happened to you, youāre reminded that itās not your fault. You are deserving and worthy of kindness, patience, and answers.
I havenāt shared since, because I needed time to rest and recover. In the interim I was able to get closer to answers and strongly advocate despite having this happen as a big hiccup.
I always say, we are stronger together. Sharing is often beneficial, and can give a voice to something you have experienced and didnāt know how to feel or how to express it to others.
Thank you for reading, for expressing concern, and for your support.
Pheo vs Fabulous 