I’m sure you’ve heard this phrase, probably hundreds of times. Although it is great advice – what does it actually mean?!
There’s a lot of different ways this phrase is interpreted, most of us associate it with rest. When your body is sending you cues to slow down or some time for self care. That’s all true, but what about all the other important aspects of it?
There’s a lot more to it than you’d think. Most of us with chronic disease are in tune with what’s normal and what’s alarming.
“Your body will let you know”
Most people when recalling a diagnosis story, they’ll tell you that golden advice. They will say “your body will let you know, you just have to listen to it” so what does that really mean? What are we listening to or looking for? Do we run to the doctor each time we have a funny pain?
Well that depends, first, you need to get to know your body.
“no one knows your body better than you”
Not all of us are in tune with our bodies, especially if you’ve never had a major health condition. We can brush off a lot of symptoms because we’re unsure of their importance. So I’m going to give you some tips and explain a bit more of what to be looking for
In order to get to know your body, you have to start listening to it. If you have a normal every day pain level of 2, take note of that. If you’re someone who has no pain at all, take note of that too. If you’re a woman, take note of what your breasts feel like, on and off your period. Get to know your smells, if you normally don’t have a perspiration smell or do. Do you often get headaches or is it unusual for you? Do your eyes twitch when you’re tired, or all the time? Is your skin very dry? Always or just sometimes? How’s your mental state? Are you a very anxious person or very calm? Always tired or full of energy?
These are just random examples, but you get the idea. We have to get a baseline idea of what our bodies normally do in order to know when it’s giving us cues. Or in some cases, alarm bells.
It’s pretty normal for most people to have the odd symptom here and there, it’s typically nothing to be alarmed about.
When I start to become more alert is when I experience a new symptom that I’ve never had before or haven’t had for a very long time. I take note, and I follow it to see if it’s getting worse or becoming consistent.
I break down the urgency by persistent or consistent. If you’re experiencing the same symptom over and over again, that’s when your body is really trying to tell you something.
If I’m experiencing a symptom that’s worsening, that’s when I’m making a trip to the doctor.
Why is it important to listen to your body?
If not you, then who will?
Going back to when people are diagnosed, later when they recount their story, they remember certain cues or things that were off. They recall things their body was doing that perhaps didn’t seem like such a big deal at the time. I can’t tell you when something is urgent, because everyone is different. I can tell you to listen and try to judge with the best of your knowledge.
I can also tell you that if something impairs your daily life or capabilities, it’s not to be ignored.
I’ll give you some examples of things I personally take note of and how I deal with them.
If my headaches become more frequent, I start to take note. It’s not for nothing, but it can be due to lack of sleep, or stress. If they become more frequent and severe, that’s when I’ll bring it up at my appointment.
Energy levels and fatigue: if I’m sleeping well, and doing all the right things – yet I’m still exhausted… I’ll take note of it.
Perspiration: if it changes or has a different smell, I take note of it. Hormones can change the way your body smells, so it’s good to know the differences.
Abdominal pain: There can be so many different types of pain, I for one experience pain on a daily basis for numerous reasons. So I take note of the level, the location, and the frequency. Is it linked to an activity? A food? Is it the same pain? How would I label it?
Skin changes: I used to think this wasn’t a big deal. “My skin is just dry because of winter”, or “I just have dry skin”. That may sometimes be the case, yes, but I’ve also had major skin changes to alert me of my thyroid changing, and my cortisol levels depleting. Many issues in our body lead to a hormone imbalance, so it’s important to be aware of the trends.
Hair loss: it’s normal to lose a few strands of hair in your brush, and in the shower. However when you’re losing clumps, getting bald spots, and it just falls out without brushing or washing, it’s a cause for concern.
Brain fog: some of us can get a bit foggy when we’re overwhelmed or not sleeping enough. However, brain fog is also a major symptom of many illnesses. It can also be caused by medications. For me personally, I take note and try to link it to a specific cause so I can deal with it IF possible.
Bloating: this can be a major issue for some of us, it can be something that needs to modified in your diet. That’s the first thing I try to take note of by trying to link it to a food intolerance. Next I will make note of the severity, does it happen after eating? Does it happen out of no where? Is it painful? Does anything help it?
Mood changes: first thing I ask myself is if it falls under my normal reaction or trends. I label the feeling, try to link it to something, and if not I ask myself if it’s related to lack of self care. If it’s really an irrational random reaction, I take note because it’s typically linked to something more important.
I could probably go on for a while with the types of symptoms I feel, but you get the picture. First take note of what it is, then try to keep an eye on the trends. Frequency, severity, and description. If you’re someone with a lot of different symptoms, it’s best to take note of the ones that stick around or are particularly painful.
Once you have your baseline of what’s ‘normal’ to you, you can then start listening for the alarm bells and cues.
Remember, often it IS a gentle reminder to take it easy, slow down, get some rest. However the only way to know is to be in tune with your body, that’s when you can begin to really listen to what it’s trying to tell you.
When I make note of all of these things, I generally try to make changes in my control to see if anything helps. If nothing changes or it becomes worse, I will talk to my doctor, get some labs done, and see what kind of plan we can come up with based on the results.
You can read how to best prepare for a doctor’s appointment here.
Sending love, unicorn magic, and a whole lot of fabulous your way 🤍✨
You may have heard this term before, maybe even more so recently. Maybe it’s happened to you, it’s not something new, but rather something that’s being acknowledged and talked about more.
So what is medical gaslighting?
(gaslighting) — the repeated denial of someone’s reality in an attempt to invalidate or dismiss them — is a form of emotional abuse.
(Medical) gaslighting happens when health-care professionals downplay or blow off symptoms you know you’re feeling and instead try to convince you they’re caused by something else—or even that you’re imagining them.
It can sometimes be tricky to identify when it’s happening, sometimes it’s a clear refusal to treat or acknowledge a patient’s symptoms. Sometimes they will acknowledge the symptoms but not want to treat you. However, it doesn’t 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 “well what did they say?” You may not be able to recount a time that they ever outright told you that you’re 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 I’m 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 doesn’t make me less positive or weaken our strength, it empowers us with the ability to move forward with our same positive outlook. I don’t 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 couldn’t speak, I’d instantly get emotional, and I would be filled with fear that I’d be dismissed and get sicker all over again. I wouldn’t want to repeat the events so I too would diminish the severity of my symptoms.
Why? before I knew what the term ‘medical gaslighting’ 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.
I’ve come a long way from that period, and I’ve used it to learn how to fiercely advocate for myself. To know what type of care I’m entitled to, and to know my rights when it comes to my health. Sometimes, it just takes ONE situation to make you feel like you’ve 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 can’t always wait to see your specialist or main doctor. Sometimes, we require emergency care…
My chest is heavy as I’m writing this, I didn’t realize how hard this was going to be. Regardless…
I’m 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 ‘pinched nerve’ 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 wasn’t 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 ‘story’ post to say I wasn’t 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 didn’t 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.
I sat there weighing my options:
Go only if it gets worse (potentially too late if it’s a precursor to a neurological event like a stroke or aneurysm) OR…
Go right now while I can still speak clearly for myself and don’t 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 can’t wait until tomorrow. It often takes multiple people and specialists to convince me to even go.
This was a time where I certainly couldn’t know the seriousness of the event myself. I also couldn’t risk going to sleep and waiting to see my doctor. My thought was: I’ll never forgive myself if I don’t go get checked and it gets worse before tomorrow. Put on your big girl pants and GO, Miranda.
So that’s what I did, I grabbed my hospital ‘go bag’ and all of my supplies needed to speak for myself if I’m 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 we’ve done hundreds of time. Knowing that it can either go extremely well, or….. the opposite
My local emergency rooms have been experiencing extreme understaffing, and even close the emerg 3-4 times a week. Even before covid, I’ve 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 it’s 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 I’m the only one there. High five!
I was triaged right away, my husband who is my primary caregiver couldn’t 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, it’s 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 around… for my own safety I have to know that if I’d 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 I’m at higher risk of crisis. Since I can’t be treated with an epi-pen and there’s conflicting conditions, it’s 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 it’s 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 “I REALLY don’t care” and stormed out of the room. Leaving my husband and I to stand there and wonder… is this how the rest of the night will be?
He instantly reassured me “well, she’s just one person! The doctor will be nice” 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 “so she can’t speak for herself? You’re here because she can’t speak on her own? You’re here to speak on her behalf?”
Not that I need to defend this, but yes. My husband literally is there for when I can’t 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. It’s happened many many times, and it’s 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 it’s 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 it’s happened before, she replied by saying “so then we can do that for you. He doesn’t have to be here, if anything changes we are capable of knowing if you can’t speak. Or do you think we aren’t capable?”
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 haven’t even begun to speak about WHY I am there. I didn’t feel confident in the surroundings, if you put yourself in my shoes. I have a rare condition that’s 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 didn’t want to argue, so to avoid putting fuel on the fire, I calmly explained that I’m not questioning their capability. It’s just if I’m alone in a room, and it happens within seconds, in the event I’m unable to speak, logically I can’t ask for help. I can’t 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 wasn’t 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 “can I tell you why I’m here?” She threw down her clipboard and replied “I HOPE you know why you’re here, they woke me up in the middle of the night for this!”
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 didn’t 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 won’t 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 “so 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?!”(No where did I say I took anything for my headache) “okay so then your headache wasn’t bad enough to take a Tylenol AND it went away?”
No, I just don’t 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 I’ve had two previous strokes. Which is why we found it of urgency to come in and get this checked. We wouldn’t think of coming to the hospital unless it’s an EMERGENCY.
She didn’t seem to find it very concerning, instead she asked me “well why isn’t THAT in your chart then, if you’ve had a stroke, wouldn’t you include it in here?”
I was caught off guard and stunned, so he replied for me. “It happened before her adrenaline was controlled, before she was diagnosed” I always include my most current conditions, because a lot has happened and I can’t fit them all on one page, I don’t 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 ‘passed the exam’.
She then began to finally explain that they don’t do labs at night, she can’t take my blood, she can’t do a scan, they don’t 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 ‘emergency’. Okay, see ya!
But then ….“even if I DID do a scan, it won’t tell me anything because you’re not symptomatic anymore”
Me: “okay, so… if there’s nothing we can do, do I just go home?”
Doctor: “well, we can keep you to observe you to see if it happens again”
Me: “okay and if it does…, that’s when we would do tests and a scan?”
Doctor: “well maybe, MAYBE in the morning”
Me: “so if it DOES happen again, what would you do?”
Doctor: “well like I said we will just monitor you and see if it does”
(Still unclear as to what that will achieve if they’re unable to do blood work or imaging)
Doctor: “I mean you’re fine now, your neuro exam is fine, you’re not having the symptoms anymore”
Me: “okay so I can just go home then? If there’s nothing, I can monitor myself and go to a hospital if it changes?”
At this point she’s said I’m fine more than once, made me feel I’m there for nothing, that there’s nothing they can do at their facility to look further into it. It’s 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 “okay, well I’ll give you two some time to decide what YOU would like to do”
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 couldn’t 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 changed…
She returned into my room, me fully dressed, standing ready to leave. I thanked her for her time, and proceeded to explain I’d 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 ‘condition’. She began back peddling and referring to me as a stroke patient. (What?!) she never once mentioned the risk of stroke, even though that’s 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 wasn’t 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 ‘neurological’ event that brought me in can happen again and again until POW! ‘The big one’ 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: “so…. If I stayed, and you monitor me, and even if the ‘big one’ happens, what would you do?”
Doctor: “well we would still have to ambulate you to the other hospital that could treat you (an hour away where we live). But I still wouldn’t send my stroke patients there! If I had a choice, I’d send them to the civic” (by which she means a larger teaching hospital in a different province) but since it’s a different province, I can’t do that. So I’d have to send you to the other hospital”
Me: “okay… 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 bridge”
Doctor: “if you stay here we can monitor you and maybe do a scan in the morning, I see you’re allergic to ‘dye’ (meaning my life threatening allergy to iodine) but I mean if we need to do a CT under emergency we will ‘just do it’
Me: “ummm, you can’t just ‘do it’ when someone has a life threatening allergy to iodine. This is is one of the reasons I’m safer at home. If you were to administer iodine even by error, you can’t 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 nurse”
Out of curiosity, I then asked “what if I just went to the civic directly now and have them do the scan? Oh right, you said they wouldn’t see anything anyway right?”
*crickets* ugh.. ugh… well… not necessarily
Like, I’m 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 I’m walking out the door, that’s when we get berated about the danger of the situation? Suddenly I’m a ‘stroke patient’? Suddenly everything changes? No. I won’t be roped into this ping pong match. I won’t 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 who’s doing something wrong.
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, I’m 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 there’s something wrong. I will be safe
As we left the hospital, I again thanked them for their time. I gave grace and understanding that wasn’t 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 couldn’t 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?
I’m nice, I’m calm, I’m organized, I provide all of the facts, I am a great advocate, I have logic, I don’t 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 didn’t 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 I’m going to sleep.
We made a plan as to what we would do in the event of the ‘what if’s’. 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 couldn’t help but wonder what we would have done had my current condition been more unstable.
This isn’t the first time something like this has happened to us, and I’m certain it won’t 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 it’s most likely not the eye that was larger that’s 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 it’s normal for eyes to go larger, but it’s 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 it’s 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 aren’t comfortable doing
Never feel you don’t have the option to get a second opinion
Never feel that you aren’t entitled to leave and seek help elsewhere
If it’s unsafe to leave, but you aren’t 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 I’m 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 we’ve 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 aren’t feeling heard or safe, but can’t 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 it’s not just ‘in my head’. But if you don’t, share within a patient support group. Anywhere that you can get support and be reassured.
Above all, please don’t 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 I’m 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 what’s 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 I’ll 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, it’s my therapeutic release of letting it go and not giving it power over me. My illness isn’t 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, you’re reminded that it’s not your fault. You are deserving and worthy of kindness, patience, and answers.
I haven’t 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 didn’t know how to feel or how to express it to others.
Thank you for reading, for expressing concern, and for your support.
I can call myself an expert by now, I would estimate in my short time on this earth… I’ve had at least 70 scans. Probably more, but I don’t keep count.
All types of scans, CT with contrast, CT without contrast, MRI, PET scans, MIBG, Octreotide, bone density scans, Gallium 68, and that’s not including your average ultrasounds and x rays.
So, I will hold the title of expert level, I might as well get something out of it. I’m going to give you the best tips I have to be prepared. I find the best way to remove the fear, is to know what’s coming. So hopefully by me sharing what to expect, the things we can control, it will eliminate some of the anxiety leading up to it.
Yesterday’s scan was an MRI, not my favourite type of scan. But then again, they all have their woes.
A lot of people ask…
“what is the best type of scan to get for a Pheochromocytoma?” but here’s the thing… it is so specific to your case.
Specific to the timing, is it diagnostic OR prognostic? Is it a follow up after surgery? Is it to see the tumor size or is it to see the tumor activity? Is it to see if you’re eligible for future treatment?
See, there’s no one size fits all answer.
But since this isn’t going to be about all the different types of scans, I will focus on the one I had yesterday: the MRI
I’m normally a CT girl, not because it’s the best, or because it’s easier – quite the opposite. A CT is normally best for diagnostic imaging, it’s less detailed than an MRI, but gets a good overall view of the body. But I’m deathly allergic to iodine, which is the injectable solution used to light up your insides. So when I do a CT, I have to go through an exhausting allergy prep in order to safely get imaging. I can’t help but giggle, having a rare cancer that requires constant imaging but being allergic to the process. Awesome.
Salt in the wound, am I right?
So because earlier this year we discovered the link between my pheo and mast cell disease, making it no longer ‘just an allergy’ but a life threatening anaphylactic condition, we switched to MRI.
Still with me?
MRI also requires an injectable solution, called gadolinium. But the chances of having a reaction to it are very low. I still prep, and I’m cautious, and I still feel the aftermath of it in my body for a couple of days. But nothing life threatening, phew.
An MRI is a more detailed image, so as previously mentioned, for me it makes sense as we already know I have cancer. We’re not looking for it, or diagnosing it, we want to see all the gory details. We want to see detailed imagery if it has metastasized further, if it’s grown or perhaps shrunk, or if it’s magically disappeared? A girl can dream.
Before I go into explaining what an imaging day looks like, and what to expect DURING an MRI… I want to talk about what the before, leading up to it.
In the weeks leading up to my scan, I get a nervous energy that I don’t even realize I have. I get very fixated on certain tasks, I get a bit scattered, foggy, yet I can’t settle down or rest. I feel the need to always be doing something, planning something, or helping someone else. It’s my way of not focusing on what is about to happen.
In the days leading up to my scan, I allow myself to realize the impact of what’s about to come. What this scan will mean to my future. My brain tries and tries to acknowledge both outcomes, but I don’t allow that.
I refocus my mindset to the impact of hearing the good news, I only focus on the good news. This may seem like blind hope, but to me, why focus on the things we can’t change?
Until there IS a problem, why create one?
I used to always go in with the attitude of expecting the worse but hoping for the best. It was a way of protecting myself and not having my world shattered if I heard bad news, and let’s be real… I heard a lot of bad news. So it became a routine, I’d go in, do my scan, and deep down knee what was to come.
Only in the last few months did that start to change, my life has changed. Well, my quality of life I should say.
Feeling hope to this magnitude, it’s a tricky thing. As previously mentioned, hope can be the hardest thing to have. In fear of it being ripped away, which has happened to me quite a few times.
But I can’t live a life expecting misery and feel no hope and dream no dreams, because that wouldn’t be a very nice existence. So I reframe my mindset to feeling hopeful, manifesting healing, dreaming of what’s to come, and praying for another miracle.
I figure, no matter what the outcome, I will deal with that when the time comes. I can’t control the outcome, but I can control my feelings leading up to it. A-ha! See?
With cancer, or any chronic illness really, we often feel so helpless. Not in control of our own bodies, our minds, our future. So I like to be in control of anything I can. In my mission statement I wrote ‘holding onto my fabulous is the one thing I can control’ and that’s still true.
Except I realized my ‘fabulous’ is much more than just lipstick or hair. It’s who I am, it’s everything that makes me, me!…
So if I had one piece of advice to those of you who are experiencing scanxiety – it’s to acknowledge the possibility of both outcomes, but put your focus on the one you want. It’s okay to quickly consider the alternative, but don’t allow it consume you. Ask for prayer, ask for love, good energy, ask for support. Do what you need to do to feel hopeful.
Set your intention on the good, and in the days leading up to your scan… live your life as normal. Go about your day, clean your house, exercise, bake, talk to your friends and family, make homemade pizzas with your kids, shop till you drop. Do whatever makes you feel good, and most of all, normal.
I can’t tell you just how many sugar free cookies I baked, and how many celebratory outfits I ordered. Yes, celebratory. BecauseI fully intend to be celebrating the outcome. That’s the intention I set, and every day leading up to the scan, I meditated about it, I sang about it, I cried about it.
And now I’m writing about it. I’m putting it out into the universe
When I began writing this blog today, I wanted to explain the process of an MRI to take a bit of the unknown out of it for others. But I’m happy it turned into something different, because I love sharing my heart with you. Let’s be real, we don’t come to pheovsfabulous for the science 😉😂
Let’s walk through what the day looks like, and some practical tips to prepare!
Confidence comes from being prepared
First step, we drive 3 hours to get imaging, so you’re going to want to be comfortable. I said comfortable, not boring. There’s nothing boring about us, we need to feel cute! Look good feel good, am I right? Ladies AND gents!
1. Choose your outfit, and make it a good one. Something that makes you feel like you can take on anything. An outfit that makes you feel POWER, and confident!
2. Prepare your hospital bag, yes, you need this! Even if your hospital is close by, you need to have certain essentials to get you through the day. Since my hospital is out of town, I always bring a small bag of toiletries just INCASE anything unexpected were to happen.
Medications, maybe a book, a good luck charm, lipgloss, you know, the essentials. I always bring my fighting pretty gloves for strength, and a stuffed animal for comfort. This time, I brought gallium. He’s my scanner buddy. More importantly, your medical resume. This is your road map for emergency protocols, allergies, history. I show you how to create that here. If ever you were to have a reaction or go into crisis and couldn’t speak, this is going to be their guide.
3. Create a playlist that pumps you up, gives you happy vibes, and passes the time. You can even listen to an encouraging podcast or whatever you’re into.
4. Prep food and drinks for your trip, takeout is hard when you’re following a low tyramine/histamine diet and allergic to nuts. This is a fasting MRI, so you’re going to be hangry. I suggest bringing at least protein bar to devour the moment you’re done the scan. We bring a small cooler and prepare for the day. We didn’t used to do this and since we have, it’s made such a difference.
5. Pillows, blanket, neck pillow. Anything that’s going to make your road smoother. If you experience chronic pain, sitting in the car for long periods can be tough. I always have a neck pillow in the car as a minimum.
6. Bring slippers! You will have to completely strip down and get into that sexy blue gown, and you don’t want to have to shuffle around in the hospital paper booties too. So bring a pair of slippers to walk around in until your scan.
7. If you wear a wig, you will have to remove it during the scan. (Magnets) I like to bring a bandana or some sort of head covering to be comfortable before and during the imaging. I sometimes sweat quite a bit in reaction to the loud noises and vibrations, and I don’t like coming out with my hair drenched. So I cover my natural hair with a bandana and it helps absorb some of the perspiration.
8. Speaking of noises and vibrations, this is something that bothers quite a few of us. You may want to speak to your doctor about taking something to relieve the anxiety or claustrophobia. Just make sure you’re able to stay awake, as there’s work to do in there!
So now that we’re fully prepared, what should we expect for the MRI?
You will check in, wait a little in the waiting room, I was allowed to be accompanied by my husband as he is my caregiver. With my conditions, I can need life saving care at any time. I can’t go wandering around alone. If your condition requires special attention or sudden medication, tell them this at the door so that your caregiver can be present up until the actual scan.
“Miranda?” Your name will be called, and you will be escorted into the injection area. The hospital I went to was lovely and had a private bed to wait in. I appreciate these details with being in so much pain and fighting to keep my eyes open.
The gadolinium injection won’t take place until during the scan, so you’ll need an IV placed. (Hydrate a lot before!) so that your veins will be ready.
The technician will insert the IV, and you will be asked to wait a bit until your turn to be scanned.
You will again be escorted into another room, this time where the MRI scanner lives.
The MRI is a big white tube, and yes, you’re going in head first. This is why I like to know what to expect, it makes you less nervous when prepared. You will lay on the hard narrow table, there will be a blanket underneath, and if they don’t have a leg wedge set up, ask for one! Thank me later. You will want that elevation to take pressure off your back, the scan will most likely last at least 20 mins, mine was about 30.
They will place a large plastic contraption over the area that’s being scanned, for me, that was my abdomen. This device will be what captures the images, and they will gently secure you to the table with some straps so you don’t have to be worried about positioning.
Before sending you into the MRI, they will place some headphones on you. This will allow the technician to speak to you throughout the test, and you will also hear a voice prompt you when to breathe and when to hold your breath.
My technician was super kind and explained to me to listen to the voice as soon as she says to breathe in, GO. Don’t wait until the instructions are finished, this was really helpful to me so that we didn’t have to repeat the photos.
**Super important tip**
For me, I don’t want to feel like I’m in a tube. So I close my eyes before I go in. I never ever open them, that way I won’t panic. Everyone is different with this, my husband likes to keep his eyes open and then close when he’s ready. It depends if you’re claustrophobic.
Everyone will leave the room, and you will move into the machine. You will begin to hear the prompts almost right away, “take a deep breath in, now hold your breath” and you will have to hold for about 30 seconds. (I counted)
How do you stay calm during the scan
I practice guided meditations every day, and I learned breath work to calm my nervous system periodically throughout the day. This can all be done through YouTube, type ‘guided meditation’ and you will see a whole bunch of meditation types. Ranging from stress relief, sleep aids, ptsd healing, etc. Doing this on a daily basis allows me to stay calm during ongoing stressful circumstances. During the scan your mind will be used to travelling to your happy place, while still listening to the breathing instructions.
About half way through the scan, the gadolinium will be injected electronically into your IV. Like any contrast, you will feel the ‘warm feeling’. AKA you will feel like you just peed yourself. It’s not AS aggressive as the iodine contrast during CT, but you do feel it. This is normal, don’t panic! You didn’t pee! I promise.
The hard part is over, kind of. You will be guided back into the injection room to have your IV removed, and you can be on your way. Go take care of your hanger, eat that protein bar, and drink LOTS of water to flush your kidneys of the dye. And I mean lots! You’ll feel better quicker.
Although the physical part is over… now the mental part is going to take its toll. Leading up to the scan, all that nervous energy you experienced, it’s going to be the opposite now.
You will most likely be drained, exhausted, mentally and physically. It’s time to rest and recover. I slept a few hours the moment I got home, and I’ll be honest – experienced a lot of pain. Have your heating pad ready, and whatever you do to control your pain levels. As I’m writing this I’m still pretty stiff. For me, the noise and vibrations of the machine makes my body tense up. Leaving me feeling like I did an extreme an workout when the whole day is done.
Speaking only from my personal experience, once the scan is done, I feel too drained to worry about the results. I did enough of that leading up to it, now it’s time to just be and let be.
Worrying will not change the results, but it will make you feel like crap. As we all know, stress is the worst thing for our bodies with this disease.
So now it’s time to rest, and do something that really brings you peace. For me, it’s doing exactly this. Writing.
This is my therapy, helping others by sharing my experience.
Someone recently asked me how I deal with the anger that comes with being dismissed for so long with rare disease.
So you just got your diagnosis. It’s hard to know how to feel, right? Thankful that you have answers? Angry that countless times you were told it was in your head? That you couldn’t POSSIBLY have that, only to have EXACTLY that..
Pheochromocytoma/paraganglioma are considered a very rare disease. The diagnostic process is a bit different for rare disease patients, and it comes with a different set of emotions when the diagnosis is finally delivered.
I’m going to talk a little bit about how I personally cope with the emotions that come from diagnosis, and what I do with the anger that comes along with it.
Of course no one wants to be sick, but with the untreated symptoms wreaking havoc on your body… honestly, by that time we are often praying for a diagnosis. Without a diagnosis, there’s no opportunity to heal, to take control back. To do something! It’s a strange dynamic, praying to be told you’re sick. Then the moment it’s confirmed.. we will give anything to be told we’re ‘fine’ again.
My first diagnosis came as a complete shock, I was 19, I’d understandably never heard of pheochromocytoma before. I never actually thought I had a 1 in a million tumor, not once did that run through my mind. I just thought I was just having sporadic attacks that made me feel like I was going to die every day. I was also relieved. I was relieved that I didn’t have to argue anymore, to prove myself to anyone. I was finally going to be able to take control over my body, and get treated. Or so I thought…
My second diagnosis was different, it’d been 4 years since my first Pheo, and I’d never been symptom free. I still dealt with the daily attacks from the adrenaline, and was being told that I was fine all over again. It was like I was stuck in a time warp that would repeat itself every day for years. I was continuously being convinced that I was ‘just’ anxious, that my blood pressure machine was wrong, my blood sugar is probably just low, etc. I heard it all. I still hear these things every day from people around the world.
My second diagnosis was a different experience, because I knew I had the disease, I knew exactly what it was, I just needed the proof. And then by the time I got proof, it was considered terminal. I was now terminally ill at 24 years old. Tough pill to swallow. How am I supposed to feel this time?
There’s no right or wrong feeling. The first time- I felt shock and then the fear of uncertainty quickly set in.
What will my future look like? Will I be able to go back to work? Will I have a normal love life? Will I always be in pain? Am I going to constantly have to be worried about it coming back? Am I going to be treated differently? Do I want to be treated differently? Am I different?
The second time- all I felt was numb, and then anger set in. I was so angry. My husband was angry. We were outraged that this could be able to happen, only… I’d find out later that it happens more than I think
I think I can confidently say I hear at least 1 person per DAY that is going through this. With this specific disease. This incredibly rare disease. It’s been six years since my diagnosis, so that’s a lot of people.
I’m generally a very happy, positive, bubbly-type chatty person. I don’t like feeling so negatively for extended periods of time. Holding onto anger. But I also know now that it’s important to acknowledge your feelings, so that you can work through them. Toxic positivity isn’t a better solution, being positive and hopeful needs to come from a place of true belief. That way the negative emotions don’t become pent up little balls of anger that burst at any given random time.
I initially channeled my anger into taking my control back, my plan? Getting a new medical team. One that would hear me, and be specialized. I needed a miracle team. I felt like if I could regain a sense of control.. I’d be able to feel different. I didn’t know what emotion I was looking for, I just needed to get past anger. I didn’t realize that I’d be holding onto that toxic feeling for longer than I’d like to admit.
It’s similar to the process of grief, you’re grieving your old life, your sense of normalcy, your old self. The ability to do mundane tasks, to relate to others in your circle, in your age group, the feeling of not knowing the importance and impact of living. It’s a hard dynamic for me because I was always so young, and I felt cheated out of a lot of opportunities I KNEW I would be amazing at. We all have things to grieve, it needs to be done.
So let’s talk more about how I regained that control. 48 hours after my diagnosis, I had arranged to see a new specialist, a whole new team. I knew I needed the best, I was 24 and given a poor prognosis. Honestly? I was dying, and they weren’t shy about telling me so. You don’t mess around when it comes to your health, you do anything and everything to change your circumstances.
Securing this new team… it made me feel I had purpose, that I was capable, I felt proud. These emotions are a lot better than anger, am I right?
As I rebuilt trust with these new doctors, fragments of anger would slowly chip away. My fear of not being heard, was slowly diminishing. Time. It takes time.
But what if we don’t have time? I’m terminal, I don’t have time to go through this long process.
Terminal illness isn’t a ticking time clock, it FEELS like that at the beginning… believe me. But I am here to remind you, eventually, with this precious time, your mindset changes.
I decided I needed an outlet for the fear, anger, and acceptance I so badly needed.
That’s when I started my blog, as a way of channeling these feelings into something good. Something with purpose. I wanted to know my experience meant something. I wanted my diagnosis to be an example for health care practitioners around the world. I wanted my story to be told to EVERY single pheochromocytoma patient.
I wanted my words to live on forever knowing they were making a difference.
Channeling your fear and anger into helping yourself? That’s a beautiful feeling.
Channeling fear and anger into helping someone else? That is when those fragments become whole again.
But let’s back up, I’m not saying everyone has to start a blog. What I am saying is that it’s important to get your feelings OUT, write them down somehow. Whether that be a journal, a support group, a diary, or a video blog. Even if you just talk to your camera and never share it! Whatever you feel comfortable with, it’s important to let your story be heard. Even if it’s just for you, this type of therapeutic action is something that for me, changed my life.
I’ve recommended different types of journals, diaries, gratitude practice, all different sorts of ways of expressing feelings to many people over the years: I’ve never heard someone say it didn’t help them in some small way.
Here’s the hard part: forgiveness. Eventually, down the road… I forgave everyone who I was still holding onto anger towards. This is NOT an easy step, I won’t sugar coat it. To get to this point, it’s a lot of work. Self discovery, trauma healing, mental health practices, growth. However, actually doing it? Meaning it?
It’s so unbelievably freeing.
I know I probably don’t need to remind anyone of this, but forgiveness is not for the other person. It’s for YOU. It’s so that you’re not suffering with those toxic feelings all your life, those fragments that are making you feel broken, while they are out in the world not even giving it a thought. You don’t have to personally forgive them, you do it however you want to. Whatever makes you feel safe.
It can be through prayer, you can again write it down, or just sit alone with yourself and say it aloud. You can role play with someone you trust.
I personally did just that, all of the ways. I had a lot to get off my chest, a lot of years of trauma and forgiveness. I only recently got to this step, after 6 years. Everyone’s time line is different, and that’s okay. Even if you decide, “no, I can’t possibly forgive someone who did this to me”
That’s okay too.
This is YOUR healing process, and you do with it what you decide. I can only let you know what I did, and what helped me. Made me feel whole again.
I’ve had a lot of people come to me and say “I could never do that”. I’m with you, I’ve been there. I said that repeatedly in the beginning, then it shifted to “one day, I think I’ll be ready” and then one day, I knew I was
So as you can see, it takes time, no one situation is a one size fits all. However we are all still very similar, and much closer than you think. That’s what being part of a community is. No matter what type of diagnosis you’re receiving, it’s going to change your life. It doesn’t have to change you, the person you are inside.
“Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!” – Pheo VS Fabulous
I’d like to send out a personal acknowledgement to everyone surviving and thriving today. Being national cancer survivors day, I thought this would be the perfect time to share this incredibly important article.
When people hear cancer survivor, they think past tense, someone who’s ‘beat’ cancer and is alive today.
A survivor is someone who’s been diagnosed, actively in treatment, in remission, and someone like me, who’s a mix of all of the above. Someone who’s surviving every day, never having the time where they can say it’s in their past. But they can say –
ˈkansər/ – disease; causing the body and mind to adapt, overcome, and embrace change.
Quality of Life:
What do these three seemingly simple words mean to you?
Someone who is living with a permanent illness which will impact their ‘quality of life’ will hear this phrase from time to time. For someone like me, who is considered a ‘palliative care patient’ (which is a polite way of saying my disease will eventually kill me) this term gets thrown around a lot. But do we ever stop to think about what it truly means? Being 30 and terminally ill, I have to think about often.
I used to just see it as a phrase. I actually used to see many things as just phrases, words put together to fill silences in sterile rooms to allow for some sort of relief from the inevitable uncomfortable points of cancer. That is, until you live them and you are intimate with each word. You get to know what each one will mean to you; you get to appreciate what kind of quality you’d like to live, and start to live it. I am going to share my perception of these words, and hopefully they will not just be words to you either.
Before I do that, let me introduce myself. My name is Miranda, I’m a 30 year old with a rare form of terminal cancer called pheochromocytoma. I’ve been living with this disease in some way or another since I was about 17-18, and officially diagnosed at 19. After my initial surgery to remove a large ‘benign’ tumor, I was misdiagnosed with anxiety for 4 years, which led to my eventual terminal cancer diagnosis.
I vowed two things in that moment: one being that I would do everything in my power to prevent this from happening to someone else by sharing my story and learning how to advocate further for rare diseases. I didn’t realize where this vow would take me, eventually filling a large gap for a rare disease that should have never had the opportunity to be terminal. And two, I vowed that cancer would never take my FABULOUS.
I wrote this mission statement when I first started my blog:
“Pheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and I’ve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when you’re battling an illness like pheochromocytoma cancer, that’s when I decided I wouldn’t let it take that away from me. It’s more than just looking a certain way, it’s about BEING fabulous, strong, and positive when you have every reason not to be”
You’re probably wondering, WHAT IS pheochromocytoma? I’ll try to keep it as simple as possible. It’s essentially a tumor or tumor(s) that secrete or produce adrenaline. Adrenaline and noradrenaline are hormones that we actually need to function as the trigger for your body’s ‘fight or flight’ response. These hormones prompt higher blood pressure, a faster heart rate and a boost in other body systems that allow you to react quickly with a burst of energy. *Think, lion attack!* A pheochromocytoma ultimately makes you overdose at any given time on these hormones, without warning, which we pheo people like to call ‘attacks’. Think: lion attack… with no lion? Essentially your tumor is attacking you with your own stinkin’ adrenaline! This causes your body to suddenly react with high blood pressure, increased heart rate and palpitations, and a whole lot of other deadly symptoms. I say deadly because if uncontrolled or untreated, these attacks are life threatening. So not only do I have cancer, but I have a cancer that tries to kill me multiple times a day with it’s poison IN my body. Fun, right? I also don’t just have one, I have metastatic disease and have anywhere from 30+ at any given time. (This is reduced greatly!)
Being so young and considered terminal, I’ve had to learn a lot about the phrase, ‘quality of life’. It’s meant to bring a sense of comfort, a sign that no matter what the cancer is going to take from you, we are going to do our best to keep you comfortable while all of these changes take place, and most importantly, just keep you who you are.
We cannot simply continue to live our pre-cancer, ‘normal lives’…right? Well, I kinda thought I could. I think we all do in some respects, and that’s normal. The difficulty is realizing where you need to adjust your expectations. I didn’t say give up there, did I? Time to ADAPT.
So here comes the hard part, once YOU start to change, no one but you can prepare you for this. The next time you hear “You’re so strong!”, don’t shy away from it. Think about what it means to them, what it means to you, and how you have truly earned it. So, you start changing, and this ‘quality of life’ thing everyone keeps talking about, seems like a very far away ideal at this point.
“How am I supposed to have any sort of Quality of Life when this disease is doing nothing but take take take?”
“I don’t even have a LIFE anymore, how am I supposed to have a ‘quality’ one?”
“Everything I am doing is supposed to ‘provide me with better quality of life’, but after every procedure I’m left feeling worse and can do less.”
“How am I not supposed to lose hope?”
My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly ‘normal’ to being completely bed ridden for months and needing a wheelchair the rest of the time. THAT was the most surprising, and still is… the uncertainty and element of surprise.
Did I tell you how wonderful it feels to simply be a little more kind to yourself?
Change is constant, and I need to be willing to accept that although my life is very different, it’s mine. The fact that I wake up every day is a beautiful thing. Understanding that even the smallest victories are worth celebrating, simple joys are to be found and appreciated every day, because these ‘small’ and ‘simple’ things… probably mean the world to you. I now go through life dreaming that everyone could see it through my eyes. Living with cancer has shown me what a gift life is, the complexity of it all becomes so simple.
Throughout most of my story, I’ve chosen to share personal aspects of my life to help others come to the same realizations and places I have, but hopefully avoid a lot of suffering along the way. I’ve experienced surgeries, clinical trials, treatment after treatment, finding the “best” doctors. I’ve been labelled palliative at 25 years old old, terminal, metastatic, aggressive, all the things you don’t want to hear. I’ve been confined to a bed, a wheelchair, and at times lost my sense of independence. I lost my voice, my ability to share, and my hope. I never thought I’d get through it.
But we did. Because cancer makes you ADAPT and OVERCOME.
I say ‘we’ because my husband goes through all of this with me, from the very beginning. Since my first diagnosis, he’s been by my side. He’s my voice when I don’t have one, and he’s my biggest supporter when I do. He is my caregiver, my everything. And our loved ones go through this journey just as much as we do.
I want to share with you a glimpse of what my life looked like a few years ago, when I thought I only had a year to live, what led me HERE today.
When they first introduced the idea to set up a bed in my living room to improve my quality of life, I thought, “now!? I’m only 25 years old, I’m not putting a hospital bed in my living room, that will never go with my decor!” (priorities, jeeze…).
Remember those simple joys? Small victories? Well THIS was the greatest joy, a godsend, a MASSIVE victory! I could see out a window, have LIFE fluttering around me, I can see my husband cooking in the kitchen, I can see my dogs run around the house, I could go and choose a very pink blanket for my new bed (ha!). I can actually walk to the kitchen and serve myself a drink or snack when I’m feeling well, I can drift off to sleep right in front of my fireplace.
That’s what quality of life is. Those aren’t just words, This is MYlife.
You too will be able to adapt to your new changing situation, overcome your new challenges, and embrace the changes as they come. You just have to remember… your new life is exactly that, a new life. You must explore the beauty it has to show, the joy it has to give, and the blessings it has to offer. Just remember, there’s no right or wrong when it comes to your life. As long as you’re the one who’s smiling at the beginning and end of it!
The most incredible part of this story? I’m 30 now, and after going through all of that, supposedly having a year to live, I’m still here sharing, thriving, and learning more every day.
I’m no longer confined to a bed, I no longer live in constant fear, I have accepted that I’m living with cancer. THRIVING with terminal cancer. I have continued to adapt and overcome and change my circumstances through hard work and advocacy. My quality of life now is a direct result of the information and research we have put into figuring out how to improve my treatments and symptom management, always taking the chance, and fighting so so so pretty.
I have learned how to forgive but not forget in order to continue to help others with this cancer, help them not only live but hopefully thrive. The best part? I never once lost my fabulous.
Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it! I can’t wait to share it with all of you, and hopefully have you share with me. I’m so grateful to be part of an incredible community of fierce thrivers. I look forward to seeing YOUR light, smile, and beauty! 🤍🙏🏼
If you had asked me six years ago what I was going to write in 2021 on rare disease day, I’d have told you I wouldn’t be here to share.
I’d have told you what they told me, I maybe have a year left.
I’m writing this to explain specifically the importance of rare disease awareness, not just a day, but every day of my life. I’ve dedicated every ounce of energy I have into sharing my journey, the ups, the downs, the discoveries. In hopes that someone would learn something from my experience.
I’ve always been a dreamer, but this was much bigger. Before I even really understood the impact of awareness, I truly believed that if I shared enough… I could make a difference. The type of difference that could prevent someone from hearing the words “it’s too late, it’s now terminal”. Like we did.
I believed deep in my soul that if I shared enough, I would finally be heard. Someone who needed it would hear me, fate would allow them to gain the knowledge they needed to push for a diagnosis.
I wasn’t even considering the fact that my experience could potentially better inform healthcare workers, and trickle down… creating a knowledge that would never be heard unless experienced by people like me living with the disease.
My first pheochromocytoma was missed because of a lack of knowledge about the disease, it wasn’t the fact that it was too rare to be considered, it just simply wasn’t thought of at all.
My second was different, the knowledge was there, but it was considered too rare to come back. It was overlooked because of the odds. The literature didn’t support what I was experiencing, so it couldn’t possibly be that.
Four years after my first one, I was finally diagnosed with a recurrence. It was misdiagnosed for too long, it spread all over. It’s terminal. I was told I’d have 1-5 years to live max, ‘based on the literature available’. The literature, the incredibly vague and unreliable literature. So little to reference and gain the knowledge needed to empower the patient or even the doctor.
This is when we realized it would become vital to my outcome for us to learn for ourselves. We had to take control of my situation, we had to look for the most knowledgeable doctor to treat me.
We didn’t want to accept my odds. So we started down a new path of self advocacy, learning, and sharing.
I started my blog, documented every treatment, feeling, reaction, change, anything.
I figured, if I’m going to die, I want to leave behind the gift of information. I wanted to re-write the literature. There was such a gap of information at that time, I wanted to help fill a small part of it.
As I shared, I started to connect with more and more people. I was learning more every day. So I kept sharing what I learned.
This new wealth of information would impact my treatment decisions, my ability to strongly advocate for myself, and be part of all decisions regarding my health.
That’s the thing with awareness for rare disease, it’s not just a cute buzz word. It’s life changing. The information we received from others was what kept me alive. It’s what allowed me to bring up my own suggestions, and avoid doing things I knew wouldn’t work for my situation.
Each new step of my journey, I would share with others, and the cycle would continue. The wealth of information and knowledge keeps growing, and we keep changing outcomes. We keep improving quality of life, and we help healthcare professionals better understand us. Leading to proper care and diagnosis.
Of course I can dream so big that if we become less rare… it can lead to a cure. And yes, it can. One day.
But for right now, I’m focusing on preventing it from getting to my stage in the first place. Where it’s incurable. If we can share enough, if we can continue to become less rare, it will be diagnosed earlier and able to be treated.
For those of us who are past that stage, like me, becoming less rare means proper treatment protocols, better treatment options, symptom management, improved quality of life, and the knowledge to be treated effectively in emergency situations. I can’t tell you how many times I’ve been asked…
“well what do YOU normally do when this happens?”
The knowledge we share will continue to educate all parties involved, making situations like this happen far less often.
I actually never dreamed of a day where I’d hear “because of your blog”…..
That’s the power of sharing, the impact of awareness.
It shouldn’t fall entirely on the patient, but our experiences are how we all continue to learn.
I am still here today because of knowledge, because of awareness. Plain and simple.
Each new mind that hears the word “pheochromocytoma”, has the ability to share that with someone else, and so on. You can never know how this will impact the person hearing it.
So keep sharing while you can.
I know I will.
The most suffering I ever experienced was not being able to use my voice. Not having the ability to share.
I hope you will help me continue to share my message, my story, my journey, my experience, and my dream.
Doesn’t mean I’m terminally ill, confused? I was too.
I still might be, but I think it’s time someone explained what it is to have a terminal rare disease.
With rare disease day approaching, I’d like to do my part in educating about this rare terminal illness I LIVE with everyday.
When I received my grim diagnosis of metastatic pheochromocytoma, it followed with “you have 1-5 years to live”. I was sentenced to death, and given a time frame to live my life. It’s haunted me ever since. It’s shaped how I perceive my world and how I went about living in it.
It didn’t have to be this way…
Delivering a diagnosis should be one of the most sensitive topics there ever is in a career. It should explain the illness you’re facing, and explain how to live with it.
Just because I’m terminally ill doesn’t mean I have to die…
It can take years upon years to die, a terminal illness means you will EVENTUALLY die of that illness, but no one should be signing your death certificate.
Just because I’m terminally ill doesn’t change the standard of care, I want to live. I deserve every treatment, every intervention, every respect that someone else with a chronic condition or just a condition gets.
I’m still living, and should be treated that way.
Just because I’m terminally ill, shouldn’t mean I’m given palliative care to help me die.
It means I should be given palliative care options to help me live, to extend my life, to improve my quality of life.
Just because I’m terminally ill, doesn’t mean I don’t have a beautiful life ahead of me.
It just looks and feels different than yours, but it’s still worth living.
When I was given my grim diagnosis, it’s all I could think about. Everyday, dying. My time was ticking. My rights were being taken away as a normal patient.
Just because I’m terminally ill, doesn’t mean I should sign a DNR to get treatment
Yes, this is illegal. But it didn’t stop the hospitals around me from withdrawing treatment, and making me too scared to call an ambulance when in an emergency because I thought they’d kill me.
Just because I’m terminally ill, shouldn’t mean I had to move three hours away to be close to a hospital who gets this.
It’s so important to have proper, quality, care. Doctors who understand what a terminal illness is, that are willing and excited to treat your rare disease with the respect it deserves. Ready to give you the respect you deserve.
Just because I’m terminally ill doesn’t mean I should have no dignity…
When I was “dying”, I lost my dignity last. I held onto it for quite some time, but eventually it went away. It was the hardest thing to lose, it shouldn’t have happened, but it did. It didn’t have to be this way.
I don’t consider myself dying anymore, I consider myself someone who’s living with a terminal illness.
I consider myself someone who will eventually succumb to this disease, but not for a very long time.
I consider myself someone who’s fought hard and long enough to share this information with you all.
I consider myself someone who can help change the way terminal illness is perceived.
If you receive that grim diagnosis, please, please, don’t give up. There ARE treatments that work.
There IS a way to be stable.
Quality of life CAN be different.
You need support, in all forms, you need palliative care, (proper care), you need a team of doctors who listen and respect you. Most of all.. you need hope. That’s what this gives you, your hope to hold onto and never let go.
I’m no stranger to treatments and procedures, that’s the understatement of the century! However, getting something done because I WANT IT done, that’s a new concept as of late.
When you’re sick, your body becomes sort of …everyone’s. It doesn’t feel like your own anymore, a product of the medical field.
Well I’m taking my body back, and I’m loving it.
Pheo VS Fabulous was built around the statement of staying fabulous throughout it all, never losing my joy. Well I think I’ve taken that in stride, but it gets difficult. It’s about time I can take back some of my fab. So I’m doing that in every way possible. Physically and mentally.
Have you ever heard the expression, “I woke up like this”?
When you have an illness, it takes a toll on you. It takes a huge mental toll, and that turns into a physical toll. We often just stop doing things for ourselves because everything is so damn hard. We do things out of convenience a lot, and stop doing things because they’re enjoyable and we WANT to.
This may sound crazy, but any time I go into see the doctor, or am surprised by the fact that I have to go in an ambulance, I always think first … “how do I look?” I HATE looking sick. I feel like the moment my illness takes over my physical appearance, it’s won. I’ve lost that one part I can control.
When I was SUPER sick, (bedridden) I did EVERYTHING possible to stay me. My hospital table was a makeup table, my slippers were cute, my pjs were always matching, I got my husband to do my hair. It was just important that I didn’t lose myself completely.
Now that I’m feeling better… I wanted to treat myself to a few things that could make this job a little easier in those times. When I’m too sick to do anything at all, but I still wanna wake up looking absolutely fabulous!
Operation lashes and brows commence!
I know I know, I’ll be the first one to admit… I’m a bit extra! 😂 I’m okay with that. Not everyone is going to feel the same way as me about these things, but I guarantee you you’d enjoy them just as much!
So first, I started with something practical. My eyebrows. The defining feature of the face. I was always extremely intimidated by eyebrow procedures because … let’s be honest, someone semi permanently changing the look of your face? Scary! That’s why you have to do your homework, and know what you want. I’d heard of microblading, a procedure where they take a hand tool and semi permanently tattoo your eyebrows in a natural way to give you the illusion of perfect brows at all times. However, it wasn’t until I’d discovered dolly lash lounge, and started researching other ways of achieving this apparent greatness, that I’d heard of ombré brows.
I would spend so much time filling in my brows with makeup, pomades, powders, gels, anything to make my brows look and feel great. Even if I didn’t do anything else to my face, I always did my brows. It was just a thing I had to do. It takes time though, and a lot of different products to achieve that perfect look. What we millennials would call the “Instagram” brow. Ha!
Ombré shading is a procedure using a machine vs by hand, and it’s semi permanent up to a year or more. It gives you the illusion that you’ve masterfully filled in your brows to perfection, except it’s always done! It looks extremely natural, depending on how dramatic you go, and it’s amazing to wake up to all the time.
Appointment time: 2-2 1/2hours
Once you’re done with the consultation, filling out the necessary medical forms, and having the actual procedure done.
I found it fairly painless, but again… this goes back to having done my research and making sure I went to a QUALITY place! I scoured their pictures on social media, read their website up and down, and looked for reviews to make sure I was getting the best of the best.
You lay down on a comfy bed, your lash/brow technician preps the area with numbing cream, (be sure to check what they use and be conscious of any allergies)! and then they start mapping out your new brows! My eyebrows were extremely sparse and uneven, so there was a lot of work to be done. When she first showed me what they were GOING to look like, I wanted to cry. I was so happy! So we went to work, and 2 hours later…. perfect brows 👌🏼
Just a side note, Katie was extremely gentle, professional, we talked so much glam, and I had the best time ever. It helps to be comfortable with the person you’re doing it with, so keep that in mind when you’re booking with a salon!
This is the first time I had to lay down for hours on end and actually have a fun result at the end instead of just a scan that showed my tumors, so I was pretty ecstatic!
Here is the first result:
So this was my first session, you can see I am red because of the procedure but they healed perfect and I love them so much! (I’m also extremely sensitive so this is normal) Your eyebrows will initially go a bit darker with oxidization, but that goes away after one week and they heal to the color your specialist custom makes for you. You have to go in once more after this a few weeks later for a touch up, it allows you to make any changes or go a bit more dramatic if you feel the need!
Mine is coming up soon, but I love my brows even as they are now. I’ll do a bit of work touching them up to darken them a bit, but other than that .. love!
Now, I’m a person that actually enjoys wearing false lashes in my spare time. Haha! But it’s so much work and money. Doing false lashes when you can barely sit to do your makeup in the first place… it’s a bit much.
So when I heard I could have lashes that were voluminous and beautiful ALL the time, I had to have this. Never glueing on a falsie again? Sold.
I’m sure you’ve heard of this, there’s all different sorts of eyelash extensions you can get. “Natural, hybrid, volume, super volume”
Well I wanted EXTRA volume. Go big or go home!
I went back to my technician and told her I wanted to be ultra glam, all the time. Hit me up with the biggest lashes you’ve got!
This is the first time I’ve been able to feel well enough to partake in these adventures, so I might as well go all out! ☺️
(And looking like I’ve done a face of makeup without actually lifting a finger… yeah, tempting!!!)
So I took the plunge.
Appointment time: 2 hours
Each lash is masterfully added to your own ONE BY ONE, by hand. It’s actually pretty crazy when you think about it. I’ve never seen such patience and precision. Of course, there are differences everywhere you go, but this was my experience.
I was pretty tired by the end of it, but it was worth it. Katie was also excellent at allowing me to have a break if I needed it, and overall I just felt super comfortable.
This is the end result! Again, my eyes are a bit red because of having them closed for so long so you tear up a bit, but I assure you they’re fab fab fab! Perfection.
I will link the website of where I got mine done, www.dollylashlounge.com so you can read yourself through the procedures and services list. I thought it would be more fun to hear it from me 😂
I told you guys I’d bring you along on my journey, and this is part of it.
Right now I’m all about taking back my fab. Thank you dolly lash for helping me do that.
And thank YOU GUYS for following along with all my crazy but fun ideas! I hope I’ve inspired you to do something fun and kind for yourself, because let’s face it… we all need a bit of love now and again. Why not let it be from you? #selflove
Support comes in all forms when you receive a diagnosis, but as you become sicker and the “old you” starts fading away, so do your relationships.
So many people want to be there for you when you first receive your diagnosis, but as you become sicker, when it all becomes real, it seems you start losing people one by one. There’s nothing worse than having to grieve your old self, plus have to mourn each relationship lost as you go.
One day you wake up, and all of a sudden you feel like you have no one left.
‘Hanging out’ and visits turn into text messages, the text messages turn into the occasional Facebook chat, and then even those just stop abruptly. Until there’s no more communication. Everyone just went away...
You can’t help but blame yourself,
if I wasn’t this sick, I’d still have friends.
If I was healthy and could have a normal conversation about monotonous things, I wouldn’t push people away.
If only I could be healthy and not intimidate people who are unsure how to approach this new “sick” me.
If only I wasn’t intimidated by them thinking about me being sick, and could fill in the awkward silences.
…If only I could erase all the sad eyes, the weakened expressions, and not have people who once respected me feel sorry for me.
This is the worst part, the pity.
If only these people knew that I’m the exact same person, the same person who was their friend for all those years. The same family member, the very same.
People change regardless of being ill, but it seems being ill puts a wedge in between the healthy and the sick. The unknown is often just too much. If I changed because I became an asshole I’d understand, but I’m the very same person.
This is the first time I’ve ever expressed how much it hurts.
How at my sickest I’ve never been so alone.
When someone says, “you must have a lot of people around you!” And you just don’t know how to respond.
How I don’t want to come off as ungrateful or selfish because there are some amazing people who have come into my life despite me being sick.
But those relationships lost still weigh heavily on my heart, and I wish I could have every single one back. Back to normal.
But I’ll never be normal.
So it shall remain…
What I will say is I’ve learned a few things while these relationships have come and gone.
It’s not your fault, even though it may feel like it is, stop blaming yourself.
Often people want to be there, they just don’t know how.
It’s exhausting trying to make others feel comfortable around you, focus on yourself being comfortable and the rest will follow.
It’s not your job to put everyone else at ease, if they are your friend, they will try to find a way to understand your new situation.
People who are truly your friend, WANT to know how you are. They don’t want the sugar coated answer, be honest with your friends.
Your best friends don’t mind changing plans, or understand when you can’t make it because you’re not feeling up to it suddenly.
Your best friends will make an effort to make YOU comfortable in this new changing circumstance, they’ll go out of their way to make sure you have a place to lay down in their home if you get tired, or have a fan handy for when you get too warm etc.
The people you lost were probably not meant to be close to you in the first place.
Don’t feel bad for making the decision to cut out toxic relationships, even though you might feel like you can’t afford to lose anyone else, it’s not worth putting yourself through hell to have “friends”.
Don’t take for granted the people who did stay around, know that they love you so much, and cherish them every day.
Five years ago I was told I had 1-5 years to live. I sat in a white office with the same diabetes posters and bland medical facts I had looked at several times, and contemplated how angry I was. Angry because had I not been so ‘rare’, something might be different. Perhaps someone might have listened to me, instead of blaming my symptoms on anxiety. This was the worst day of my life.
If someone had just listened to me while I complained of symptoms for years, I would not be sitting here listening to how I had 18 tumors that metastasized all over my organs, and were now killing me at an aggressive rate.
I left the office that day SO angry, but that anger turned into determination. The fiercest determination I could have ever felt, I was not going to die because I wasn’t heard.
I would be heard.
For the last five years, I’ve been heard. I may have suffered along the way, I may have had to do every form of treatment possible, but I’ve been heard.
Not accepting my fate was one of the best decisions I could have made, even after countless disappointments and setbacks, despite being told again and again mountains of bad news, I didn’t give up.
We didn’t give up.
I have news …
Today I sat in a white office, waiting to see my oncologist to hear an update of my cancer progression. For the first time in the last five years, I held onto the hope I felt countless times, and waited for news.
It’s always bad news …
Not this time.
Today, for the first time since my diagnosis, I was told I was stable.
There’s no cure for the cancer I have, not at this stage. I was given palliative care, and supposed to await death. I was sent away to die at 24 years old.
I didn’t accept that, I fought. Hard.
Now I’m stable!!! DO YOU KNOW WHAT THIS MEANS?
Stable means that for now I don’t have to continue treatment, I can take a break. Stable means I don’t have to go do any more scans for 6 whole months, 6 months! Stable means I can be in less pain, it means less attacks.
It means hope...
I’m writing this with tears in my eyes, because when I started this journey I just wanted to make a difference in as many peoples lives possible. To prevent suffering like mine. Today I feel that I can finally GIVE hope, the hope I’ve been clinging to so hard for the last few years.
Many of you have followed my journey from the beginning, clinging onto that hope just as hard. I’m finally able to tell you that I have good news, and it feels incredible.
If you’re reading this and you’re going through treatment, if you’re in pain, if you’re suffering, if you’ve just received your diagnosis, wherever you are in your journey… just know that I’ve been there.
Now I’m here.
It’s an amazing thing.
My life will never be normal, and I’m certainly not cured, but this is the first time I can say that I’m able to breathe a little. I don’t have to plan my life around what treatment is next, wondering if it will work, or what side effects it will have. I can just live. For now, I can breathe again.
If you’d like to see more of my journey, and learn about what treatments I’ve done… take a look around my blog. My most recent treatment plan was PRRT, although scary, it definitely made a difference in my condition.
Not giving up saved my life, being heard by the best of doctors for this condition… changed everything.
Never, ever, give up.
Hope is the hardest thing to have, but it’s worth it.