“Being given this gift is a rare insight not many get to have, until it’s too late to apply it. I have the pleasure of giving a glimpse to all of you now” pheo vs fabulous
Being palliatively treated was one of my biggest fears, because it meant I was dying. Everyone was speaking to me about my death, it was the hot topic of my 20s. A lonely place to be in.
If something is terrifying to you, it’s because it’s foreign. By getting to know our fears better, it will become less so.
My curiosity made my fear of death less foreign. I challenged the purpose of this care, whether it was to die or to help my pain and suffering while LIVING.
If used properly, it can be such a beautiful way of removing suffering allowing you to LIVE fully. I am privileged to have learned this
I realized then by sharing my life and my story as a young seemingly vibrant ‘full of life’ woman… it would make others challenge the ideology that surrounds death also. When someone else is confronted with the same fate, they will see that there’s more to death than just dying. You have to have lived in order to die.
I share my life to bring light to these topics that we see as dark. I share as a reminder to take notice of all the beautiful moments and let it inspire you. The way I hopefully inspired you.
Like everything in life there are stages, palliative care is full of people who are very much alive. like me.
You may be wondering why I’m talking about this. Well because I have this unique lens to offer my point of view. By no means do we have to be happy about dying, but we CAN be at peace with it.
Happiness and sadness have to coexist, happiness is a comparative emotion. Once you feel some level of pain and sadness, you can feel happiness and gratitude. Otherwise you’d not know when happiness is, we wouldn’t feel joy. We would feel… neutral, we wouldn’t feel the euphoria of relief and the multitude of emotions.
Light can’t exist without dark, happiness can’t exist without sadness, just like life and death. We can’t live unless we die. We can’t die unless we’ve lived.
THAT is what I mean when I say I’m terminal and thriving, staying fabulous, or fighting pretty. I am able to live through pain because it’s what has led me to my happiness. Living in peace with my body, illness, even death, has given me this gift to live with the purpose we ALL deserve.
I never ever want anyone to pity me, I want you to feel so empowered and fearless to apply this point of view to all aspects of your life. I have chosen to share my unique lens to comfort, to change, to challenge, to connect.
Even if you feel you can’t relate to what I share, we all have life in common. Know that you don’t have to face death in order to start truly living. We all have fears, we all want happiness, we all live and die.
Being given this gift is a rare insight not many get to have, until it’s too late to apply it. I have the pleasure of giving a glimpse to all of you now.
I can’t control how others view the world, happiness, death, or even how you view me. I do however hope that you feel the love in my intention.
In the blink of an eye, my life has changed so many times, for better and for worse. What I’ve shared with you today is the hardest thing I’ve ever had to learn. Yet it’s my most profound lesson, and I’m honoured to be here alive to share it with you.
I hope a little piece of what I put into the world finds it’s way to you. A mindset tip, a makeup hack, a cute outfit for a hospital day, ways to cope, a tip to advocate, a goofy video, how to fight pretty, or a super profound shift in spiritual awareness.
Whatever it may be, these are all the pieces that make us who we are, I hope it leads you to your own ‘fabulous’.
“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 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.
In this post I’m going to give you a road map of how I manage with pain with different techniques for severe flare ups AND daily prevention.
I’ve dealt with my fair share of pain, I remember living day to day at a pain scale of 12+ and couldn’t quite get it under control. I truly suffered for years and pain was my primary issue.
I remember not being able to stand because my feet were so sore, I couldn’t sit because my tailbone hurt so much, and I couldn’t comfortably lay down because my skin literally hurt to the touch. I was miserable. But there were things that we learned along the way that helped significantly, so I’m going to share them. But not before I explain WHY 👇🏼
Please always consult your team before making any changes. Integrating new techniques into your daily routine is okay, but removing something without your doctor’s knowledge can be dangerous.
If you didn’t already know, we heavily advocated for a diagnosis of mast cell disease this year. There was a lot of symptoms not adding up with my primary illness… and a lot of red flags over the years for MCAS.
Part of having mast cell disease is a chemical and medicationintolerance. Your body doesn’t like a lot of stuff. So the regular pain management approach that was being used for me at that time, was unknowingly making me worse. Much worse
When you have pheochromocytoma or metastatic disease, pain relief can already be tricky since there’s medications that can make the same hormone expression in our bodies as the tumors. Sometimes making us more symptomatic and in more pain.
If you mix mast cell disease into the equation, it’s a recipe for disaster.
So what did I do? Well first, we had to evaluate if I was on the right medications… or on the wrong ones!
This is a quick emergency reference guide of medications to avoid and that are better tolerated in most cases of mast cell disease. This is from the mast cell society.
So once I fully detoxed from the bad medications on the list, and began life saving treatment for MCAS, I could now begin my healing journey. It saved me, I could now begin to manage my pain.
All that being said, let’s get to pain management!
With such a restriction of traditional pain management, we had to start learning different forms from of relief. I was kind of forced to do so, and I’m actually thankful for that. I don’t think I would have believed how well integrative relief worked if I hadn’t tried it myself. I think that this is something every chronic pain sufferer should know either way.
Mind body connection:
I’m not going to get too scientific, but I was told when I had my very first surgery that the brain will imprint pain.
If the brain gets used to pain, it’s difficult to find relief. Which is why it’s important to understand the link between the mind body connection.
You can’t just say “okay I’ll be really positive and believe I’m not in pain and it’ll go away!” No, it’s much deeper than that.
The more pain we endure, it can make the brain can experience anxiety and depression. Which makes pain worse.
Which is what led me to managing pain in a way where I don’t just throw a pill at it.
I know, it was hard for me to wrap my mind around this too. We are made to believe that medications are the only way of pain relief. Especially in palliative care. But please don’t get me wrong, I’m NOT saying medications are bad, I’m just saying that it takes MORE to truly control pain. Also in my specific circumstances, I didn’t have a choice. With the restrictions on the list above, pain management isn’t easy.
Let’s talk about that sudden, unexpected, all encompassing type pain that makes you feel panic and pushes your body into overdrive. My list may seem extreme, but I promise the more prepared you are…. Quality of life improves significantly.
Through panic tears, squeezing headache, nausea and sharp belly jabs, it’s difficult to give the body the oxygen it needs to calm down. So there’s a few steps to a flare that I follow. Especially if chest pain is involved.
*if you’re alone, you will want to put aside an emergency pain flare setup. So things can be easily grabbed and accessed. If you’re with someone, they need to know how to respond and what measures to take. Either way, perhaps print the following information and keep it handy. I will also include a list of supplies at the end.
1. First, get to your safe place. For me, this is my bed. My bed offers me the most relief, and I can adjust to how I need to position myself.
2. Elevate your legs, I have an adjustable base, which allows me to put myself in zero gravity with 1 touch. This has been a life saver for me for many reasons, but not everyone has this. Keep some firm pillows or preferably a wedge nearby to quickly access if your bed is not adjustable. Putting your legs into what they call ‘zero gravity’ position means your legs are higher than your heart.
120° angle bend at the hips puts your body in the “zero stress zone”
Spinal vertebrae are decompressed and muscles are relaxed
Airway and nasal passages are opened up
Elevated legs reduce stress on the heart
Heart and stomach are slightly below the head and knees
I can literally go on and on about the benefits of zero gravity, which is why I have an adjustable bed. In a flare, it will open your airways, reduce the stress on your heart, and put you into a reduced stress zone for pain relief. This is scientifically proven.
3. Once you’re in your safe zone, your legs are elevated, you will begin to feel just a tiny bit more calm. I promise. Reducing the feeling of stress and panic to your body will already alter your pain receptors, allowing your body to be less tense, and begin to think more clearly.
4. Heat and Cold Therapy: In a flare state, most likely you will experience sweating, flushing, and added discomforts. Which brings me to my next point: heat and cold therapy.
Having a cooling band for your head will help relieve the inevitable headache you will experience, and it will also cool your body temperature. Cool therapy also can help with nerve pain. So having more than 1 cooking band is a good idea. You can even use a cold wash cloth. Whatever works for you.
Heat therapy is typically a heating pad, or some sort of heat relief. So again having it ready and easily accessible is important. I always have my heating pad rigged and ready to go inmy bed.Always plugged in! The more prepared you are, the smoother these flares become.
5. Massage: most of you are probably reading this and going “well I don’t have a personal masseuse!” 😂 and I get that. I promise, I got you!
IF you do have someone able to gently rub your body to relieve the tension the pain is creating, then do so. Not all types of pain allow us to be touched, but if it’s not the yucky skin pain, then go ahead with light massage.
If you’re a caregiver reading this, the power of a light touch is incredible. Even if it’s just to say “I’m here” without words. This is dependant on your partner or loved one, but I find it very helpful to have my head rubbed lightly during this event. It’s helpful for the body to go into a relaxed state, loosens the muscles, and can alleviate some of the tremors.
So what do you do if you’re by yourself? Well you guys KNOW how much I love Amazon. (Hehehe)
Introducing the massage mat: it can even be heated! Which eliminates the use of a heating pad. So many of you have asked me if I know about a heating pad that hits all areas of the body, so I did my research, V 😉
6. Guided Meditation or sound therapy: okay, I’ll ask you to keep an open mind here. I know a lot of us hear the word meditate and think something entirely different than what it is. Meditation simply means your mind is focusing on a particular thought. Learning how to meditate is incredibly important because if we circle back to the first step, you’re much more likely to achieve a state of reduced panic if you’re able to practice mindfulness. And that’s what meditation is, practicing mindfulness. I had NO idea how to meditate, and honestly? I like to take the guess work out of it. Which is why I use a guided meditation practice. I’m sounding all fancy, but literally just search on YouTube ‘guided meditations’. For this specific circumstance, I will link the one that helps me in a pain flare. It’s short, it’s specific to pain, and it’s very good at calming me down and putting me to sleep. Sleep is the primary end goal in a flare. I will talk more about the benefits of meditation later.
*Once you are able to achieve this mindfulness, you can use this focusing technique during painful procedures, scans, and any situation where you need to disconnect.
Sound therapy means that if you’re unable to listen to someone speak like in a guided meditation, you can use sound healing instead. It operates on a frequency that can offer different forms of relief for your body. Here’s an example of a pain frequency:
7. This may seem obvious but keeping your flare up emergencymedications close to you in different parts of the house can make all the difference. I keep a mini medication kit beside my bed since that’s my safe place. If I’m experiencing ‘that type’ of headache, or anything flare related that can be calmed with medication treatment, I take it before doing anything else. That way it has time to sink in while I’m trying to calm my body.
If you haven’t already noticed, the primary goal of pain management during a flare is to calm the nerves, the nervous system, the mind, it’s all about the calm!
8. At this point we should have achieved a state of exhaustion, the pain should be dying down, but we have nothing left in our tank. So it’s time to sleep … sleep is the number 1 restorative factor in our overall health and actually helps with daily pain control. If you get a restorative night’s sleep, your body and cells regenerate and heal. If we reframe our brains and pretend like you’re going to pay 120$ for some special exclusive healing therapy, we might be more motivated to get our money’s worth!
So what we just went over was mainly considered pain relief type practices, because they’re meant to reduce pain NOW. But what I’ve learned I’m trying to manage my pain? It’s a full time job!
Daily healing takes time, dedication, education, it can be expensive, and can seem daunting to do on our own. But the way I’ve explained it, I’ve used a lot of selfhealing methods to try and remove some of that burden.
Pain management is the practice of constant self care and prevention techniques, it’s treating your body like the precious vessel that it is. It’s self care, it’s nutrition, it’s movement, it’s mindfulness, it’s everything we discussed above and much much more.
If you rolled your eyes at any one of those things, I get it. I really do. I am NOT saying “get some fresh air and do some yoga” and you’ll feel all better.
I am not minimizing pain nor am I saying it’s a one size fits all, I’ve been exposed to chronic pain all of my life in various forms. I’ve grown up witnessing my father suffer in chronic pain from a work accident. My sister having been hit by a car and in an extended coma when I was 12… I’ve seen pain. I am a 30 year old palliative woman, I GET PAIN. I promise I have the life credentials.
But what I am saying is that… the thing they don’t teach us in the pain clinics or when people are prescribed heavy narcotics, is that our brains play a powerful role in how we feel. The mind body connection is so important, and once understood and used correctly… can be life changing.
I’ve gotten angry at people for telling me to take a walk or get fresh air. Especially when I was physically unable to do those things a lot of the time. It won’t cure you, it won’t make it go away, but in combination with other daily habits can really help us toward managing our mental AND physical well being.
My husband showed me that no matter what your circumstances, you have to continue to do the things you love. The things that bring you enjoyment and calm. So hopefully I can be that person for you.
If I couldn’t leave bed, I’d get outside in my wheelchair. Feel the vitamin d in your face for a moment, breathe the fresh air. It’s just an important note to change your surroundings and not fall victim to your illness.
My daily management road map:
You’re going to see a trend here, the main goal for management is to manage your stress, your mood, your mental well being, your body’s inflammation levels, physical activity… but overall, the mind plays a major role in pain management strategies. Let me show you:
1. Nutrition: If your condition has any link to food triggers or intolerance, get to know them. Study them inside and out and start eliminating. Don’t wait, I’m telling you! I wish I had done this sooner. Start writing down what you eat and how you felt afterwards. I knew with pheo I couldn’t have foods high in tyramine, but I didn’t really understand the impact. I knew with MCAS I couldn’t have foods high in histamine. If you’re unsure of your condition, an elimination diet could be helpful. Then once you reintroduce the foods one by one, you will see what you react to.
Understanding the role of nutrition is probably… one of the things that impacted my overall health the most.
Weight related pain caused me extreme joint pain, weakness, skin sores, inflammation, clothing discomfort. My conditions kept me gaining and incredibly inflamed, swollen, sore. Until we finally figured out what diet worked best. For me and my angry tumors, my broken mast cells, and my AI, the best lifestyle I can follow is: low carb, sugar free, low histamine and low tyramine life.
Anyone can benefit from eliminating processed foods and sugar, but it’s a personal choice and can be difficult when trying to manage everything else. Believe me, food is a great source of comfort for us. Hello, doctor CUPCAKES. But when I saw the difference in my pain and even my mood? I wish I had known sooner
If you don’t know where to begin, just stay in the fresh part of the grocery. Whole foods are vegetables, eggs, meats, and anything that isn’t processed or canned. I know this sucks, but eliminating alcohol completely is so important with this disease. There’s really no good alcohol and it will cause an immediate reaction.
2. We talked about meditation, so if you can, incorporate it into your daily lifestyle. Like I said, start slow, and easy. Open YouTube, type ‘guided meditations’ and choose one that speaks to your mood at the moment. Anxiety, stress, grounding, chakra balance, pain, overactive mind, sleep, self love, there’s a meditation for just about anything. Tips to incorporate it into your day: wake up and do a quick 5-10 gratitude session. Mid day when taking a nap, choose one that’s a little longer to rest to. Then when you go to bed, put one on for sleep. That’s 3 right there!
3. Daily mindfulness: because I’m often asked what my daily habits are and what is self healing… I use an app called aura, it curates coaching sessions, CBT therapy, breath work exercises, meditations, all specific to your needs. It’s a quick and beginner way to learn how to connect with yourself.
Try exploring some self healing books, some topics I recommend are: PTSD recovery, gratitude practice, mindset, anxiety control, and self care. If you’d like me to share my reading list let me know in the comments and I will dedicate a post to it.
If you’re new to practicing gratitude, order a 6-10$ gratitude journal on Amazon. This would be a good place to start. Acknowledging what we’re grateful for helps dig us out of a rut, it improves our way of thinking, and it allows us to see the good even when things are very bad. Law of attraction is real y’all!
If you’re asking yourself… what does this all have to do with pain? You’re not wrong for asking, most people connect pain relief with traditional practices and physical actions. But for management it’s important to be managing your mindset, mood, outlook, and coping strategies. It’s all linked in one way or another, but I can’t do more than offer you the guidance and assurance that it works for me. It’s up to you to make the decision to include what works for you.
Another way to practice mindfulness is to listen to music, get in a habit of putting on some headphones when doing any task. Listen to whatever speaks to your mood, anything to boost your happy hormones, am I right?!
4. Movement: okay this is a big one. It’s also hard when you’re unable to move much at all. I’ve been there as well. But movement is important for circulation, for inflammation, and pain relief!
Some things you can do if you’re sedentary: physio, physio, physio.
Think of when you just get surgery, the first thing they have you do is walk and sit. Think of it like that.
You can do physio in bed, you can do physio from a chair, and it doesn’t always have to be formal. I did my own physio for months with exercise sheets provided to me by the hospital. Ask your physician for some physio exercises, or look for your own and ask if it’s okay for you.
I also used to lift one pound weights in bed, just to move my arms around and not completely lose my muscle mass. We would do leg exercises while I was laying down, and I began slowly walking more and more.
Laughing, smiling, and bed dancing helps too.
If you’re moderate, you can incorporate movement by walking. What I like to do is give myself a daily steps goal, no I am not running a marathon so I won’t achieve 10,000 daily steps like most people, but I cried the day I hit 1000. Some days I would only get to 68 steps, so even if you increase that goal to 100, it ALL COUNTS! Now sometimes I can even get to 5000!
YouTube has a ton of free light impact workouts, physio routines, and light strength training. I love body by Amy, and I also really enjoy beach body on demand, they always include a modified version which I appreciate. I always do the super modified version!
If I’m walking – I’m dancing. I may look ridiculous, and I love it! I dance in the kitchen, I dance brushing my teeth, I dance doing my skincare. Any way to get some movement in and my blood flowing! Also, being silly helps you smile and helps others around you smile. And happy hormones offset angry hormones, well that’s what I tell myself anyway.
This may sound taboo for some but … sex! Sex is not only movement, but it’s a way for the brain to create natural endorphins. Making your body less stressed, happier, and reduces pain. Cool, right?! And remember, you don’t always need a partner for sex! Hint hint. I’ll leave you with that thought. In all seriousness, I know when we’re feeling blah and in pain the last thing you want to do is have sex. Sex can be painful for a lot of us, but it is good to keep pleasure in mind because it’s a natural way of creating pain relief and improved mood. Swearsies!
Good old walking, but make it enjoyable. Go somewhere nice, go to the water, the beach, the woods. Switch it up, let it be good for the mind and the body at the same time.
Last but not least, I try as much as I can to incorporate movement by doing everyday house tasks. I’m not able to do a lot, but unloading the dishwasher or preparing a meal can really change the way you feel about yourself. It makes me feel accomplished and it reduces my stress levels. And if you dance while you’re doing it, it’s a double movement bonus!
5. Sleep: we talked about sleep, but we have to make it a habit in order for it to be helpful and restorative. We don’t just want to pass out from a flare or when we’re delirious. (This was me for many years) once I got the proper treatment for all of my illnesses, my sleep improved. The night terrors went away, and the adrenaline panic jumps stopped.
Some things we can do to improve our sleep habits are…
-Clean sheets and comfortable bedding (you can’t beat that ‘hotel’ feeling’!) make every day like you’re on vacation in your own home
-Going to bed 1 hour earlier per night. (I have a sleep alarm on my phone that tells me when to wind down)
-meditate to go to sleep, or listen to a sleep story, or even just put on some calming sounds, I promise it works!
-if you experience sleep apnea or breathing issues, it’s important to participate in a sleep study and be treated
-zero gravity position. Yes! You can sleep this way. It’s not just for flares. Having a slight elevation opens your air ways, increases circulation, and takes pressure points off your back. It also helps with acid reflux sufferers. All of which wake us up frequently. Try it, thank me later!
Please keep in mind that sleep includes rest, so although we will be meditating daily, and doing mindful practices… it’s not sleeping. Our bodies need A LOT of rest, my nap time is 3pm sharp! Don’t ever feel guilt for sleeping, for resting, but I recommend really resting and not just watching tv or scrolling on your phone. Our bodies need time to restore, and yes nightly sleep is vital for this. But so is daily rest!
Especially if you’re feeling down or a depression creeping in, your body may require more resting time than normal. You will know when, just listen to the cues your body gives you.
6. Daily tracking: get used to writing things down. Download a diary app (orange diary, or diarium) or get yourself a notebook. The more you write down your symptoms, your triggers, your moods, your patterns, your activities, the more you will see what’s helping or hurting. It’s also helpful for your medical team and YOU! Think back to your last appt, Were you struggling to describe the type of pain when you were reliving it to the doctor? This is why tracking it is important, in real time. It gets to be a habit and it can be what literally saves your life.
7. What brings you joy? You guys, I can’t stress this question enough, I saved it for last for a reason. Not because it’s the least important, but because it’s the MOST important. Living with life altering illnesses can be all encompassing, most of us only go out when we see our doctors. Or for treatment, and if we’re really lucky, the grocery store. So I can’t stress this enough, what do you LOVE doing? What makes you happy?
I understand you may not be able to zip line or bunjee jump, but there’s always a way to adapt to your previous passions. And also find new purpose! We don’t lose who we are because we become sick.
Remember when I said my husband taught me it’s possible to do the things you enjoy when you’re sick? Well, it’s sometimes difficult, and comes with extra planning and help… but it’s do-able.
I’ve also found that the simplicity in life has brought me great joy compared to before, I can appreciate just about any moment or see something beautiful.
It’s all of the above daily healing practices that’s helped me with this. But we all hold the ability to see things in this way.
However we HAVE to do things that bring us happiness, it’s what gets us from one day to the next, and it’s what helps us release our minds temporarily from the pain.
Self care is a huge part of my happiness, all of the above is self care. Self care is dedicating time to YOU and your healing. So I am prescribing a big fat dose of SELF CARE to you! That’s why I share so much of my routines, my love for taking care of myself, because it brings me joy. And guess what? When we’re happy, we’re often experiencing a momentary release from the pain!
I personally love this, sharing. I love staying fabulous, and I love helping others. That’s what brings me joy.
I also love unicorns, Starbucks, writing, SHOPPING, Christmas, birthdays, chalet getaways, sunsets, selfies, massages, movie nights with friends, cooking, pedicures, manicures, skincare, makeup, my husband’s smirk, his smile, my dogs, pink things, soft blankets, my bed, fresh flowers, things that sparkle, planners, journals, writing lists, being organized, and … well, just about anything else. Not in that particular order
I’m not hard to please. My point is, think of what makes you happy. Do at least one thing per day that gives you that feeling.
So that’s all folks, that’s my pain relief guide and management plan. You have aced the course! Now you just have to live it. I bet you weren’t expecting what you just read, but living it is the best part!
I always say the best feeling in the world is having something to look forward to. Well I hope I’ve created that feeling for you, planning all the ways you will incorporate these into your life to successfully manage pain!
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.
35 things we wish you knew about having a rare cancer, chronic disease, or rare illness.
Here’s the thing, before I start… I want you to know that I’ve asked hundreds of patients fighting this disease and others to chime in on what we wish you knew. This post is not entirely from my perspective, but it’s all the things I feel.
It’s important to know that we all don’t fit into one neat little box. We all have our own perspectives and things that bother us and things we wish you knew.
This is my effort to put as many of these together and help as many of our friends, family, and support systems understand where we’re coming from living with this disease.
It’s hard enough to live with cancer, chronic illness, or rare disease, but it’s even harder to not be understood.
We know we’re complicated, but we didn’t ask to be this way.
I sincerely hope that this brings you a level of comfort knowing that there are ways of communicating with your loved ones, if you just take the time to understand. Having a rare disease requires knowledge, patience, and a lot of understanding.
You may not always have the right thing to say, but it’s best to just ask.
So, here goes nothing.
1. I wish you knew that I’m in pain every.single.day, even when I don’t show it. It’s always there. Imagine waking up every single morning and every part of you hurting… with no hope of it going away, and every movement you make, it just gets worse throughout the day.
2. I wish you knew that I hate answering “how I’m doing”. I feel like you don’t want a long winded answer, but that’s often all I’ve got. So I’ll often tell you “I’m fine, or okay” just to answer. I wish you’d ask something specific so that I can be honest.
3. I wish you knew I don’t feel “brave or strong”. I didn’t have a choice to wake up with cancer or any co-morbidities. I’m not brave because I have cancer, I’m not strong because I have cancer, I was forced into this life.
4. I wish you knew I felt uncomfortable when you say I’m an inspiration because I have cancer. If I’ve done something to deserve it, and it’s well intentioned, I appreciate it. Actually, I appreciate it regardless. But I just wish it wasn’t such an automatic response to having cancer. Having cancer doesn’t get to all of a sudden make you not a shitty person if you are one 😂 it doesn’t immediately make you an inspiration. At least, we don’t feel that way.
5. I wish you wouldn’t say you’re sorry when I tell you I have cancer. I don’t know how to respond and it makes me uncomfortable. It’s like we’re forced to say “it’s okay”, but… it’s not okay. Please try and be sensitive to speaking to someone with an illness, it’s uncomfortable for all involved but it doesn’t have to be. You can be sorry, it sucks, but maybe ask us more about our disease, open up a dialogue to understand us better. We appreciate that more than being felt sorry for.
6. I wish you knew that not all pheochromocytoma is cancerous, but even when it’s “benign” it’s just as dangerous and often can turn into cancer. The C word is what scares people, but it should be the P word that frightens you more. Pheochromocytoma is the disease we fight. Benign, malignant, it doesn’t matter. It’s one of the scariest diseases out there.
7. I wish people would understand that just because I had surgery to remove the pheochromocytoma tumor, they often do and will come back. We’re never really “done” or cancer free. If it is cancer, we live with it for life. It’s a terminal illness. Despite all the treatments and surgeries we get, it’s a way of managing the disease, not curing it.
8. I wish people understood how many triggers there are with this disease. My tumors literally hate everything. My skin feels like it’s on fire within 30 seconds of sun exposure. I can’t take a hot shower without having an “attack”. I can’t walk far or fast without provoking an attack. I can’t get too excited. I can’t get stressed. I can’t blow dry my hair without being soaked in sweat. I sometimes can’t do the dishes without provoking an attack. It can be something big like exercising or something small like getting dressed, but it can and will happen without any notice. There are certain foods we can’t eat because it’s a trigger. Loud noises. The list goes on, it may be helpful when we tell you this that you do a bit of research yourself to understand us more and what we go through. Maybe start here.
9. I wish you would look up my disease every once and a while before exhausting me. I’m happy to talk about my disease, I’m happy to explain it, but I don’t want to have to repeat myself 1000 times because you refuse to do the research. If you care, you should want to know more.
10. I wish you understood that my cancer is different than other cancers. These tumors are different than any other tumor. They are adrenaline secreting tumors. I wish you understood what impact adrenaline has on the body. It’s debilitating, it’s dangerous, it’s lethal, and can be deadly. People hear “we produce too much adrenaline” and picture a scene from an action movie. No, it’s not fun. We don’t have superpowers, and it doesn’t give us more strength. It’s the opposite. Read here about what having an attack of adrenaline is like.
11. I wish you understood that even if I look perfectly well in photos or even in real life, you should see my insides! It takes many hours to look “normal”. We do it to take the pressure off of ourselves and you, but it doesn’t mean we’re even close to being ok. Many people do this with chronic illnesses, so that they can feel more like themselves. It doesn’t make them any less sick, in pain, or uncomfortable.
12. I wish you knew how uncomfortable I am when you say “well I hope they fix you soon” or “you’ll feel better tomorrow”. These comments can sometimes be belittling to our disease because they can’t “fix” us. We won’t feel better tomorrow. We will never be normal. These are just facts, it’s not negativity. If you don’t know what to say to someone with this disease, try to pick up on their feelings, responding with “wow that must be rough on you” or acknowledging our pain isn’t a bad thing. It doesn’t always have to be cheery sunshines.
13. I wish people wouldn’t say “I lost the battle to cancer” or anything along those lines. Cancer didn’t win. Everyone dies. When someone dies of a heart attack, they don’t say “the heart attack won”. Fighting cancer isn’t a choice and shouldn’t be summed up to determine our strength or how well we fought it.
14. I wish you understood that getting a good nights rest or going out to get some fresh air isn’t an option for me sometimes. Yes these things feel good and I hope I can do them more often, but it’s not going to magically make me better. Please understand that this disease is more complicated than even the doctors understand, so no amount of nutrition, exercise, fresh air, will sort us out.
15. I wish you knew how much I just want to live a normal life again.
16. I wish you knew how different I feel and out of place I am.
17. I wish you knew that it will never be normal again.
18. I wish you knew the fear I feel even after the disease is removed, we have to wait in fear as it comes back one day.
19. I wish you wouldn’t avoid me because you feel uncomfortable talking to me. There are so many resources to be able to talk to a friend with a chronic illness, cancer, or any disease. A true friend will never be disappointed in what you said, but we will help you better understand it. We’d rather you learn with us rather than cut us off completely.
20. I wish you knew how much I appreciate when you say “no matter what happens, we will get through this”
21. I wish you knew how much I appreciate when you say “I’ll always be there for you, no matter what happens” and live up to that.
22. I wish that if it’s too hard for you to be there for me, you’d explain it. If you’ve lost someone with cancer and it’s hard on you to relive it, I wish you’d say that. We often blame ourselves when we lose friends gradually and never know why. We beat ourselves up about what we did wrong. We’re incredibly lonely. It’d be nice to have an explanation or try to talk things out, even if it’s difficult.
23. I wish people knew how many comorbidities this disease causes. High blood pressure, heart failure, adrenal insufficiency, chronic pain, kidney disease, bone disease.
24. I wish our doctors would actually SEE the patient in front of them. Understand that we are different. When I get my blood pressure taken and it’s in the “perfect zone” but for ME it’s actually considered high because of the amount of medication I’m on to lower it. Listen! When we tell you what the Pheo does to our bodies and what an attack is, listen! Learn from us. Know that we’re a different breed of disease. Take us seriously, we often know more than the medical staff. Just because we appear to be okay, and don’t fit in your medical mold you’ve created, doesn’t mean we’re not sick! This would prevent a lot of misdiagnosed patients, and speed up the diagnostic process if you’d just LISTEN to us.
25. I wish that you knew behind my smile, there’s so much pain. I’m exhausted, I still have to go on everyday and live my life despite this illness. But I’m tired. Not just take a nap tired, but physically and mentally exhausted from living with something that’s trying to kill me everyday.
26. I wish you knew what living in “constant fight or flight” meant. Never being able to shut off. Always having adrenaline pumping through your veins.
27. I wish you understood that your anxiety is not the same as what my anxiety from this disease feels like. I’m not talking about normal anxiety that anyone can get, I’m talking about chemically induced anxiety panic that is caused by an overflow of hormones in my body. It’s like anxiety on steroids mixed in with impending doom and a dash of dread.
28. I wish you knew how much this disease alters the trajectory of our lives. We can’t plan, we have to live minute to minute. We’re often told were lucky because it’s a slow growing illness and so even if we die, we’ll have plenty of time. Excuse me?!!! The level of ignorance here is just inexcusable.
29. I wish you’d understand that under all of the things I’ve talked about today, I’m still the same person! I’m still here. Treat me that way. I still have hopes, dreams, I still like the same jokes, I still have the same interests. I am not my cancer. I don’t want you to only treat me like I’m “normal” when I look “normal”. I want to be treated normal even when I’m at my sickest, especially when I’m at my sickest!
30. I wish you wouldn’t ask “how are you?” But “is there anything I can do for you?
31. I wish you knew that even after taking 20 different medications, I don’t feel better. They allow me to get up and semi function, but they’re not a cure.
32. I wish you understood there isn’t a cure.
33. I wish you understood that I can’t control my anger or emotions. It’s not me, it’s literally my tumors deciding what mood I’ll be in at that particular moment.
34. I wish I didn’t have to talk about any of this.
35. I wish I never heard the word pheochromocytoma.
I hope this helped get a glimpse into our world, and I hope you can use this as a resource with your friends and family when you want them to understand more.
If there’s anything I missed, or anything YOU want to ask, please leave a comment down below and I’ll do my best. Don’t forget to share
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.
If you have been in the “rare disease” world with us, you may wonder what the reference is to the zebra.
When you hear hoofbeats, we are trained to think horses, not zebras … 🦓
This means that in a world full of thinkers where the first answer is always to rule out the “obvious” answers first, us “rare” zebras often get misdiagnosed because it’s just too bizarre or too complex to possibly be real. Right? Wrong. We are real, we are rare, but we’re there.
NOW, imagine living in a world where you’ve only JUST started to find ways of settling in becoming a zebra, but now….. you’ve become even more confusing that even that doesn’t fit – Shall we say….. exhausted? Now you must be a unicorn 🦄
As much as I LOVE unicorns, it’s not something I wish to be health wise. However, we don’t always get what we wish for…
Or else I wouldn’t be a continuous medical mystery. A zebra, a unicorn, stomping my hooves as loudly as I can to no avail… A very complicated, extremely complex little unicorn. So desperate to be figured out but constantly misheard, misunderstood, and continuously misdiagnosed.
I was able to begin discussing this journey when I began to regain my mental stamina a few days ago here, thanks to my amazing specialists who are working towards figuring out what I am now referring to as my puzzle 🧩
With so many pieces (symptoms), and crisis’ happening – it’s proved difficult to sort out another compounding diagnosis when already living with such a rare disease.
Does that excuse make it okay for our hooves to be ignored? No. It clouds what is potentially a more potent and dangerous lurking enemy. So, what does one do? Well I’m not going to lie. It’s been a hell of a ride, it’s been isolating, I’ve felt ways I can’t begin or want to describe right now, but what I’m here to say right NOW is that we are still fighting.
I’ve said it now and I’ll say it again, if you don’t fight for yourself… who’s going to fight for you?
It’s the unfortunate truth.
This is your life. It’s yours to save.
We have come to realize this through a series of challenges I’d prefer to have not had to endure, but change is the only constant … so we are now looking ahead to the journey we are choosing to see as a positive one. Because that’s how you get through this, often we talk about ‘fighting it’ but we don’t talk about how to beat it.
We have to, because to us we see it as an opportunity FOR change, for answers. We just want answers. No matter what they are. Going back to basics and feeling helpless is certainly not the answer.
Going backwards when you have already been robbed of the ability to move forwards is one of the most helpless feelings to have in the world.
We are coming on 3 weeks in the hospital, with the help of my incredible team I am functioning at a much more tolerable level so far – so that I can actually do plenty of testing in order to get these answers. This journey is tough, but we are fighting our hearts out. I hope you will be alongside with us, because I have a feeling we might just need that little extra bit of prayer and pixie dust
Remember that gold standard Gallium-68 super amazing impossible-to-get fancy scan I got in order to get accepted to this clinical trial a while back? Well…
My amazing husband Doctor cupcakes was able to get me in AGAIN directly from the hospital on a day pass to get that super amazing scan today. What would normally take 4-6 weeks, took 48 hours, so a huge huge huge thank you to everyone in Sherbrooke, QC. You guys truly were my angels and we are so grateful for everything you did for my situation. Thank you for understanding and extreme considerations 😭😷
My heart is so full of gratitude, and I wanted to take this opportunity to share that.
Here’s a little glimpse of our radioactive day pass mission, a day in the life of a hospitalized unicorn 🦄 😂