āBeing given this gift is a rare insight not many get to have, until itās too late to apply it. I have the pleasure of giving a glimpse to all of you nowā 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, itās because itās 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 āfull of lifeā womanā¦ it would make others challenge the ideology that surrounds death also. When someone else is confronted with the same fate, they will see that thereās 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 Iām 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 youād not know when happiness is, we wouldnāt feel joy. We would feelā¦ neutral, we wouldnāt feel the euphoria of relief and the multitude of emotions.
Light canāt exist without dark, happiness canāt exist without sadness, just like life and death. We canāt live unless we die. We canāt die unless weāve lived.
THAT is what I mean when I say Iām terminal and thriving, staying fabulous, or fighting pretty. I am able to live through pain because itās 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 canāt relate to what I share, we all have life in common. Know that you donāt 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 itās too late to apply it. I have the pleasure of giving a glimpse to all of you now.
I canāt 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 Iāve shared with you today is the hardest thing Iāve ever had to learn. Yet itās my most profound lesson, and Iām honoured to be here alive to share it with you.
I hope a little piece of what I put into the world finds itās 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 āfabulousā.
āFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!ā ā Pheo VS Fabulous
I can call myself an expert by now, I would estimate in my short time on this earthā¦ Iāve had at least 70 scans. Probably more, but I donāt keep count.
All types of scans, CT with contrast, CT without contrast, MRI, PET scans, MIBG, Octreotide, bone density scans, Gallium 68, and thatās 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. Iām going to give you the best tips I have to be prepared. I find the best way to remove the fear, is to know whatās 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.
Yesterdayās scan was an MRI, not my favourite type of scan. But then again, they all have their woes.
A lot of people askā¦
āwhat is the best type of scan to get for a Pheochromocytoma?ā but hereās the thingā¦ 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 youāre eligible for future treatment?
See, thereās no one size fits all answer.
But since this isnāt going to be about all the different types of scans, I will focus on the one I had yesterday: the MRI
Iām normally a CT girl, not because itās the best, or because itās easier – quite the opposite. A CT is normally best for diagnostic imaging, itās less detailed than an MRI, but gets a good overall view of the body. But Iām 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 canāt 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 ājust an allergyā 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 Iām 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. Weāre 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 itās grown or perhaps shrunk, or if itās magically disappeared? A girl can dream.
Before I go into explaining what an imaging day looks like, and what to expect DURING an MRIā¦ 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 donāt even realize I have. I get very fixated on certain tasks, I get a bit scattered, foggy, yet I canāt settle down or rest. I feel the need to always be doing something, planning something, or helping someone else. Itās 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 whatās about to come. What this scan will mean to my future. My brain tries and tries to acknowledge both outcomes, but I donāt 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 canāt 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 letās be realā¦ I heard a lot of bad news. So it became a routine, Iād 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, itās 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 canāt live a life expecting misery and feel no hope and dream no dreams, because that wouldnāt be a very nice existence. So I reframe my mindset to feeling hopeful, manifesting healing, dreaming of whatās to come, and praying for another miracle.
I figure, no matter what the outcome, I will deal with that when the time comes. I canāt 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 āholding onto my fabulous is the one thing I can controlā and thatās still true.
Except I realized my āfabulousā is much more than just lipstick or hair. Itās who I am, itās everything that makes me, me!ā¦
So if I had one piece of advice to those of you who are experiencing scanxiety – itās to acknowledge the possibility of both outcomes, but put your focus on the one you want. Itās okay to quickly consider the alternative, but donāt 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 scanā¦ 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 canāt 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. Thatās 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 Iām writing about it. Iām putting it out into the universe
It
Will
Be
Okay
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 Iām happy it turned into something different, because I love sharing my heart with you. Letās be real, we donāt come to pheovsfabulous for the science šš
Letās 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 youāre going to want to be comfortable. I said comfortable, not boring. Thereās nothing boring about us, we need to feel cute! Look good feel good, am I right? Ladies AND gents!
Me, Gallium, and my āhospital bagā
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. Heās 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 couldnāt 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 youāre into.
4. Prep food and drinks for your trip, takeout is hard when youāre following a low tyramine/histamine diet and allergic to nuts. This is a fasting MRI, so youāre going to be hangry. I suggest bringing at least protein bar to devour the moment youāre done the scan. We bring a small cooler and prepare for the day. We didnāt used to do this and since we have, itās made such a difference.
5. Pillows, blanket, neck pillow. Anything thatās 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 donāt 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 donāt 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 youāre able to stay awake, as thereās work to do in there!
The MRI:
So now that weāre fully prepared, what should we expect for the MRI?
Our prayer ritual before the scan
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 canāt 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.
āMiranda?ā 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 wonāt take place until during the scan, so youāll 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.
(This is just a sample image to show the scanner)
The MRI is a big white tube, and yes, youāre 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 donāt 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 thatās 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 donāt 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. Donāt wait until the instructions are finished, this was really helpful to me so that we didnāt have to repeat the photos.
**Super important tip**
For me, I donāt want to feel like Iām in a tube. So I close my eyes before I go in. I never ever open them, that way I wonāt panic. Everyone is different with this, my husband likes to keep his eyes open and then close when heās ready. It depends if youāre claustrophobic.
Everyone will leave the room, and you will move into the machine. You will begin to hear the prompts almost right away, ātake a deep breath in, now hold your breathā 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 āguided meditationā 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.
This is our favourite daily meditation
About half way through the scan, the gadolinium will be injected electronically into your IV. Like any contrast, you will feel the āwarm feelingā. AKA you will feel like you just peed yourself. Itās not AS aggressive as the iodine contrast during CT, but you do feel it. This is normal, donāt panic! You didnāt 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! Youāll feel better quicker.
Although the physical part is overā¦ now the mental part is going to take its toll. Leading up to the scan, all that nervous energy you experienced, itās going to be the opposite now.
You will most likely be drained, exhausted, mentally and physically. Itās time to rest and recover. I slept a few hours the moment I got home, and Iāll be honest – experienced a lot of pain. Have your heating pad ready, and whatever you do to control your pain levels. As Iām writing this Iām 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 itās 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 itās time to rest, and do something that really brings you peace. For me, itās doing exactly this. Writing.
This is my therapy, helping others by sharing my experience.
In this post Iām going to give you a road map of how I manage with pain with different techniques for severe flare ups AND daily prevention.
Iāve dealt with my fair share of pain, I remember living day to day at a pain scale of 12+ and couldnāt 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 couldnāt sit because my tailbone hurt so much, and I couldnāt 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 Iām going to share them. But not before I explain WHY šš¼
Please always consult your team before making any changes. Integrating new techniques into your daily routine is okay, but removing something without your doctorās knowledge can be dangerous.
If you didnāt 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 illnessā¦ and a lot of red flags over the years for MCAS.
Part of having mast cell disease is a chemical and medicationintolerance. Your body doesnāt 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 thereās 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, itās a recipe for disaster.
So what did I do? Well first, we had to evaluate if I was on the right medicationsā¦ or on the wrong ones!
Emergency reference guide for mast cell patients
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, letās 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 Iām actually thankful for that. I donāt think I would have believed how well integrative relief worked if I hadnāt tried it myself. I think that this is something every chronic pain sufferer should know either way.
Mind body connection:
Iām 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, itās difficult to find relief. Which is why itās important to understand the link between the mind body connection.
You canāt just say āokay Iāll be really positive and believe Iām not in pain and itāll go away!ā No, itās 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 donāt 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 donāt get me wrong, Iām NOT saying medications are bad, Iām just saying that it takes MORE to truly control pain. Also in my specific circumstances, I didnāt have a choice. With the restrictions on the list above, pain management isnāt easy.
Pain flare:
Letās 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 areā¦. Quality of life improves significantly.
Through panic tears, squeezing headache, nausea and sharp belly jabs, itās difficult to give the body the oxygen it needs to calm down. So thereās a few steps to a flare that I follow. Especially if chest pain is involved.
*if youāre alone, you will want to put aside an emergency pain flare setup. So things can be easily grabbed and accessed. If youāre 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 āzero gravityā position means your legs are higher than your heart.
120Ā° angle bend at the hips puts your body in the āzero stress zoneā
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.
Leg wedge pillow example
3. Once youāre 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 āwell I donāt have a personal masseuse!ā š 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 itās not the yucky skin pain, then go ahead with light massage.
If youāre a caregiver reading this, the power of a light touch is incredible. Even if itās just to say āIām hereā 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. Itās 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 youāre 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 š
Heated massage mat
6. Guided Meditation or sound therapy: okay, Iāll 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, youāre much more likely to achieve a state of reduced panic if youāre able to practice mindfulness. And thatās 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. Iām sounding all fancy, but literally just search on YouTube āguided meditationsā. For this specific circumstance, I will link the one that helps me in a pain flare. Itās short, itās specific to pain, and itās 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.
āThe mindful movement: healing chronic pain 20 min guided meditationā
Sound therapy means that if youāre 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. Hereās an example of a pain frequency:
Search āpain relief frequencyā or āstress relief frequencyā or whatever form youāre looking for. Itās like spa music but is used as a healing method.
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 thatās my safe place. If Iām experiencing āthat typeā 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 Iām trying to calm my body.
If you havenāt already noticed, the primary goal of pain management during a flare is to calm the nerves, the nervous system, the mind, itās 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 itās time to sleep ā¦ sleep is the number 1 restorative factor in our overall health and actually helps with daily pain control. If you get a restorative nightās sleep, your body and cells regenerate and heal. If we reframe our brains and pretend like youāre going to pay 120$ for some special exclusive healing therapy, we might be more motivated to get our moneyās worth!
So what we just went over was mainly considered pain relief type practices, because theyāre meant to reduce pain NOW. But what Iāve learned Iām trying to manage my pain? Itās 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 Iāve explained it, Iāve 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, itās treating your body like the precious vessel that it is. Itās self care, itās nutrition, itās movement, itās mindfulness, itās 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 āget some fresh air and do some yogaā and youāll feel all better.
I am not minimizing pain nor am I saying itās a one size fits all, Iāve been exposed to chronic pain all of my life in various forms. Iāve 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 12ā¦ Iāve 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 thatā¦ the thing they donāt 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 correctlyā¦ can be life changing.
Iāve 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 wonāt cure you, it wonāt 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 couldnāt leave bed, Iād get outside in my wheelchair. Feel the vitamin d in your face for a moment, breathe the fresh air. Itās just an important note to change your surroundings and not fall victim to your illness.
My daily management road map:
Youāre going to see a trend here, the main goal for management is to manage your stress, your mood, your mental well being, your bodyās inflammation levels, physical activityā¦ 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. Donāt wait, Iām 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 couldnāt have foods high in tyramine, but I didnāt really understand the impact. I knew with MCAS I couldnāt have foods high in histamine. If youāre 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 probablyā¦ 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 itās 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
These are foods that HELP lower histamine naturally
If you donāt know where to begin, just stay in the fresh part of the grocery. Whole foods are vegetables, eggs, meats, and anything that isnāt processed or canned. I know this sucks, but eliminating alcohol completely is so important with this disease. Thereās 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 āguided meditationsā and choose one that speaks to your mood at the moment. Anxiety, stress, grounding, chakra balance, pain, overactive mind, sleep, self love, thereās 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 thatās a little longer to rest to. Then when you go to bed, put one on for sleep. Thatās 3 right there!
3. Daily mindfulness: because Iām often asked what my daily habits are and what is self healingā¦ I use an app called aura, it curates coaching sessions, CBT therapy, breath work exercises, meditations, all specific to your needs. Itās 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 youād like me to share my reading list let me know in the comments and I will dedicate a post to it.
If youāre new to practicing gratitude, order a 6-10$ gratitude journal on Amazon. This would be a good place to start. Acknowledging what weāre 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 yāall!
If youāre asking yourselfā¦ what does this all have to do with pain? Youāre not wrong for asking, most people connect pain relief with traditional practices and physical actions. But for management itās important to be managing your mindset, mood, outlook, and coping strategies. Itās all linked in one way or another, but I canāt do more than offer you the guidance and assurance that it works for me. Itās 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. Itās also hard when youāre unable to move much at all. Iāve been there as well. But movement is important for circulation, for inflammation, and pain relief!
Some things you can do if youāre 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 doesnāt 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 itās 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 youāre 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 wonāt 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 Iām walking – Iām 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 thatās what I tell myself anyway.
This may sound taboo for some but ā¦ sex! Sex is not only movement, but itās a way for the brain to create natural endorphins. Making your body less stressed, happier, and reduces pain. Cool, right?! And remember, you donāt always need a partner for sex! Hint hint. Iāll leave you with that thought. In all seriousness, I know when weāre 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 itās 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. Iām 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 youāre doing it, itās 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 donāt just want to pass out from a flare or when weāre 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 areā¦
-Clean sheets and comfortable bedding (you canāt beat that āhotelā feelingā!) make every day like youāre 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, itās important to participate in a sleep study and be treated
-zero gravity position. Yes! You can sleep this way. Itās 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!
Beside me you will see my adjustable remote, my headphones, my emergency pill kit, and my gratitude journal. Proof I practice what I preach!
Please keep in mind that sleep includes rest, so although we will be meditating daily, and doing mindful practicesā¦ itās not sleeping. Our bodies need A LOT of rest, my nap time is 3pm sharp! Donāt 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 youāre 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 whatās helping or hurting. Itās 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 canāt stress this question enough, I saved it for last for a reason. Not because itās the least important, but because itās 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 weāre really lucky, the grocery store. So I canāt 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 thereās always a way to adapt to your previous passions. And also find new purpose! We donāt lose who we are because we become sick.
Remember when I said my husband taught me itās possible to do the things you enjoy when youāre sick? Well, itās sometimes difficult, and comes with extra planning and helpā¦ but itās do-able.
Iāve 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.
Itās all of the above daily healing practices thatās 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, itās what gets us from one day to the next, and itās 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! Thatās why I share so much of my routines, my love for taking care of myself, because it brings me joy. And guess what? When weāre happy, weāre often experiencing a momentary release from the pain!
I personally love this, sharing. I love staying fabulous, and I love helping others. Thatās 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 husbandās smirk, his smile, my dogs, pink things, soft blankets, my bed, fresh flowers, things that sparkle, planners, journals, writing lists, being organized, and ā¦ well, just about anything else. Not in that particular order
Iām 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 thatās all folks, thatās my pain relief guide and management plan. You have aced the course! Now you just have to live it. I bet you werenāt 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 Iāve 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. Itās 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 couldnāt 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.
Iām 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, thereās no opportunity to heal, to take control back. To do something! Itās a strange dynamic, praying to be told youāre sick. Then the moment itās confirmed.. we will give anything to be told weāre āfineā again.
My first diagnosis came as a complete shock, I was 19, Iād 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 didnāt 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, itād been 4 years since my first Pheo, and Iād 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 ājustā 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?
Thereās 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… Iād 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. Itās been six years since my diagnosis, so thatās a lot of people.
Iām generally a very happy, positive, bubbly-type chatty person. I donāt like feeling so negatively for extended periods of time. Holding onto anger. But I also know now that itās important to acknowledge your feelings, so that you can work through them. Toxic positivity isnāt a better solution, being positive and hopeful needs to come from a place of true belief. That way the negative emotions donāt 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.. Iād be able to feel different. I didnāt know what emotion I was looking for, I just needed to get past anger. I didnāt realize that Iād be holding onto that toxic feeling for longer than Iād like to admit.
Itās similar to the process of grief, youāre 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. Itās 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 letās 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 werenāt shy about telling me so. You donāt 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 donāt have time? Iām terminal, I donāt have time to go through this long process.
Terminal illness isnāt 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.
Thatās 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? Thatās a beautiful feeling.
Channeling fear and anger into helping someone else? That is when those fragments become whole again.
But letās back up, Iām not saying everyone has to start a blog. What I am saying is that itās 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, itās important to let your story be heard. Even if itās just for you, this type of therapeutic action is something that for me, changed my life.
Iāve recommended different types of journals, diaries, gratitude practice, all different sorts of ways of expressing feelings to many people over the years: Iāve never heard someone say it didnāt help them in some small way.
Hereās 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 wonāt sugar coat it. To get to this point, itās a lot of work. Self discovery, trauma healing, mental health practices, growth. However, actually doing it? Meaning it?
Itās so unbelievably freeing.
I know I probably donāt need to remind anyone of this, but forgiveness is not for the other person. Itās for YOU. Itās so that youāre 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 donāt 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. Everyoneās time line is different, and thatās okay. Even if you decide, āno, I canāt possibly forgive someone who did this to meā
Thatās 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.
Iāve had a lot of people come to me and say āI could never do thatā. Iām with you, Iāve been there. I said that repeatedly in the beginning, then it shifted to āone day, I think Iāll be readyā 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. Thatās what being part of a community is. No matter what type of diagnosis youāre receiving, itās going to change your life. It doesnāt have to change you, the person you are inside.
Your āfabulousā…
āFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!ā ā Pheo VS Fabulous
Iād 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 whoās ābeatā cancer and is alive today.
A survivor is someone whoās been diagnosed, actively in treatment, in remission, and someone like me, whoās a mix of all of the above. Someone whoās surviving every day, never having the time where they can say itās in their past. But they can say –
ĖkansÉr/ ā 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 āquality of lifeā will hear this phrase from time to time. For someone like me, who is considered a āpalliative care patientā (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 youād 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, Iām a 30 year old with a rare form of terminal cancer called pheochromocytoma. Iāve 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 ābenignā 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 didnāt 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:
āPheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and Iāve 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 youāre battling an illness like pheochromocytoma cancer, thatās when I decided I wouldnāt let it take that away from me. Itās more than just looking a certain way, itās about BEING fabulous, strong, and positive when you have every reason not to beā
Youāre probably wondering, WHAT IS pheochromocytoma? Iāll try to keep it as simple as possible. Itās 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 bodyās āfight or flightā 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 āattacksā. Think: lion attack… with no lion? Essentially your tumor is attacking you with your own stinkinā 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 itās poison IN my body. Fun, right? I also donāt 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, Iāve had to learn a lot about the phrase, āquality of lifeā. Itās 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, ānormal livesāā¦right? Well, I kinda thought I could. I think we all do in some respects, and thatās normal. The difficulty is realizing where you need to adjust your expectations. I didnāt 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 āYouāre so strong!ā, donāt 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 āquality of lifeā thing everyone keeps talking about, seems like a very far away ideal at this point.
āHow am I supposed to have any sort of Quality of Life when this disease is doing nothing but take take take?ā
āI donāt even have a LIFE anymore, how am I supposed to have a āqualityā one?ā
āEverything I am doing is supposed to āprovide me with better quality of lifeā, but after every procedure Iām left feeling worse and can do less.ā
āHow am I not supposed to lose hope?ā
My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly ānormalā to being completely bed ridden for months and needing a wheelchair the rest of the time. THAT was the most surprising, and still isā¦ 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, itās 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 āsmallā and āsimpleā thingsā¦ 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.
Embracing change
Throughout most of my story, Iāve 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. Iāve experienced surgeries, clinical trials, treatment after treatment, finding the “best” doctors. Iāve been labelled palliative at 25 years old old, terminal, metastatic, aggressive, all the things you donāt want to hear. Iāve 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 Iād get through it.
But we did. Because cancer makes you ADAPT and OVERCOME.
I say āweā because my husband goes through all of this with me, from the very beginning. Since my first diagnosis, heās been by my side. Heās my voice when I donāt have one, and heās 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!? Iām only 25 years old, Iām not putting a hospital bed in my living room, that will never go with my decor!” (priorities, jeezeā¦).
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 Iām feeling well, I can drift off to sleep right in front of my fireplace.
Thatās what quality of life is. Those arenāt 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 rememberā¦ 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, thereās no right or wrong when it comes to your life. As long as youāre the one whoās smiling at the beginning and end of it!
The most incredible part of this story? Iām 30 now, and after going through all of that, supposedly having a year to live, Iām still here sharing, thriving, and learning more every day.
Iām no longer confined to a bed, I no longer live in constant fear, I have accepted that Iām 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 canāt wait to share it with all of you, and hopefully have you share with me. Iām so grateful to be part of an incredible community of fierce thrivers. I look forward to seeing YOUR light, smile, and beauty! š¤šš¼
If you had asked me six years ago what I was going to write in 2021 on rare disease day, Iād have told you I wouldnāt be here to share.
Iād have told you what they told me, I maybe have a year left.
Iām writing this to explain specifically the importance of rare disease awareness, not just a day, but every day of my life. Iāve 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.
Iāve 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 āitās too late, itās now terminalā. 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 wasnāt 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 wasnāt the fact that it was too rare to be considered, it just simply wasnāt 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 didnāt support what I was experiencing, so it couldnāt 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. Itās terminal. I was told Iād have 1-5 years to live max, ābased on the literature availableā. 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 didnāt 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 Iām 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.
Thatās the thing with awareness for rare disease, itās not just a cute buzz word. Itās life changing. The information we received from others was what kept me alive. Itās what allowed me to bring up my own suggestions, and avoid doing things I knew wouldnāt 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, Iām focusing on preventing it from getting to my stage in the first place. Where itās 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 canāt tell you how many times Iāve been asked…
āwell what do YOU normally do when this happens?ā
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 Iād hear ābecause of your blogā…..
Thatās the power of sharing, the impact of awareness.
It shouldnāt 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 āpheochromocytomaā, 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.
Pheo VS Fabulous š¤š¦
Sending you unicorn kisses, love, and pixie dustāØ
My husband and I often say āwe have cancerā. A cancer diagnosis affects everyone involved, your spouse, your kids, parents, your friends, anyone who is a pivotal part of your life.
Anytime weāre in the doctors office we catch ourselves saying āweā, and we will be greeted with odd looks. But thatās the thing, WE do have cancer. It hits home like a bomb, it shakes up all of our worlds. One is physically fighting the disease, the other is fighting in every other way on their behalf.
We fight for one another when the other is down, we are each otherās voice when we donāt have one, and we continue to carry the load whenever we need to for one another. Thatās a partnership. Thatās a family.
The first instinct that everyone wants to do is help, fix, and act. Everyone gets into a very adrenaline like state the first few months after diagnosis, just going through the motions, trying to hold it together. This is normal.
However, itās so important to be communicating. My husband and I in the beginning would hide our feelings a lot not to upset each other more. We didnāt even realize we were doing it.
He would be so overwhelmed with the fear of losing me, and Iād be overwhelmed with the thought of losing him. I hear a lot of people go through the same experience, but the issue is we often donāt communicate our fears to one another. This can be challenging for a lot of people.
We end up getting a bit edgy, holding in so many toxic emotions, we need an outlet. We HAVE to talk about it!
Itās important for it at least sometimes be with each other, that way everyone knows how sensitive to be with one another, how patient, and where your mindsets are at.
The thing is with the instinct to act, is that weāre always wanting to jump into motion the moment our loved one is suffering. We want to find a solution, fix their problem. We try to control all the things we can control.
Meanwhile feeling completely helpless, and out of control.
Itās a vicious cycle.
Even after all this time fighting this disease, and knowing itās better to just listen to someoneās fears and thoughts… whenever my husband is having a tough time or not feeling well, I STILL have the instinct to react and try to mend my his heart, his body, or his mind. I think itās just in our nature.
So I can only imagine how he feels with me. He has way more restraint than I do though! š¤
Thatās the thing, once we understand that we will ALWAYS have that immediate urge to fix… but first, we must listen! Truly listen. Let the other person talk whenever theyāre ready, only when theyāre ready. Offer for them to talk about whatās bothering them, ask them..
ādo you want to talk about it?ā Donāt push too much or ask too many questions. Just be a sounding board. Also, giving a choice is very empowering.
When the person has truly gotten everything off of their chest, in time… we can start introducing helpful solutions, small acts of care, and things that help, but not necessarily FIX… just alleviate some of the pain or pressure theyāre holding onto.
This can be by simple things. Like massage, meditating together, taking a walk in the fresh air, setting a time each week to have vent and have an open communication session, anything that works for your rhythm in your household.
Itās so important to remember that when someone is sick, we are ALL feeling it in different ways. Add on the pressure of the pandemic…. and oooo boy, it really is a life altering and uncertain time.
When supporting one another, try to think:
āhow would I want someone to respond to ME right now?ā
āWhat would make me feel better in this situation?ā
āWhat kind of support would I appreciate after sharing what I just shared?ā
If we are mindful of this, we can offer better support to our partner or family. Anyone who is involved.
If youāre trying to support a friend or a family member (not your partner or someone in the household), the same rules apply. You should consider everyone involved.
So if youād like to reach out and help, try to make suggestions that take a bit of pressure of everyone.
Whether that be a kind gesture like offering to bring groceries, drive them to an appointment to give the care giver a break, or simply send them a little thoughtful note, letter, book, maybe an uplifting journal, anything to just brighten their day. As we all know, most of us have more bad days than good.. so chances are, you will completely change their day or week with one small gesture of help or kindness.
I will share more soon on how to support a loved one with cancer, but for now I just found it important to remind us all…
WE have cancer.
We ALL need support.
We all need to come together.
WE will get through this!
Comment down below if this was helpful to you š¤šš¼
Doesnāt mean Iām terminally ill, confused? I was too.
I still might be, but I think itās time someone explained what it is to have a terminal rare disease.
With rare disease day approaching, Iād 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 āyou have 1-5 years to liveā. I was sentenced to death, and given a time frame to live my life. Itās haunted me ever since. Itās shaped how I perceive my world and how I went about living in it.
It didnāt 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 youāre facing, and explain how to live with it.
Just because Iām terminally ill doesnāt 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 Iām terminally ill doesnāt 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.
Iām still living, and should be treated that way.
Just because Iām terminally ill, shouldnāt mean Iām 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 Iām terminally ill, doesnāt mean I donāt have a beautiful life ahead of me.
It just looks and feels different than yours, but itās still worth living.
When I was given my grim diagnosis, itās all I could think about. Everyday, dying. My time was ticking. My rights were being taken away as a normal patient.
Just because Iām terminally ill, doesnāt mean I should sign a DNR to get treatment
Yes, this is illegal. But it didnāt stop the hospitals around me from withdrawing treatment, and making me too scared to call an ambulance when in an emergency because I thought theyād kill me.
Just because Iām terminally ill, shouldnāt mean I had to move three hours away to be close to a hospital who gets this.
Itās 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 Iām terminally ill doesnāt mean I should have no dignity…
When I was ādyingā, 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 shouldnāt have happened, but it did. It didnāt have to be this way.
I donāt consider myself dying anymore, I consider myself someone whoās 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 whoās 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, donāt 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. Thatās what this gives you, your hope to hold onto and never let go.
Support comes in all forms when you receive a diagnosis, but as you become sicker and the āold youā 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. Thereās 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 thereās no more communication. Everyone just went away...
You canāt help but blame yourself,
if I wasnāt this sick, Iād still have friends.
If I was healthy and could have a normal conversation about monotonous things, I wouldnāt push people away.
If only I could be healthy and not intimidate people who are unsure how to approach this new āsickā me.
If only I wasnāt 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 Iām 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 Iād understand, but Iām the very same person.
This is the first time Iāve ever expressed how much it hurts.
How at my sickest Iāve never been so alone.
When someone says, āyou must have a lot of people around you!ā And you just donāt know how to respond.
How I donāt 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 Iāll never be normal.
So it shall remain…
What I will say is Iāve learned a few things while these relationships have come and gone.
Itās not your fault, even though it may feel like it is, stop blaming yourself.
Often people want to be there, they just donāt know how.
Itās exhausting trying to make others feel comfortable around you, focus on yourself being comfortable and the rest will follow.
Itās 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 donāt want the sugar coated answer, be honest with your friends.
Your best friends donāt mind changing plans, or understand when you canāt make it because youāre not feeling up to it suddenly.
Your best friends will make an effort to make YOU comfortable in this new changing circumstance, theyāll 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.
Donāt feel bad for making the decision to cut out toxic relationships, even though you might feel like you canāt afford to lose anyone else, itās not worth putting yourself through hell to have āfriendsā.
Donāt 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 … š¦
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 š¦
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.
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.Ā
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 thatās how you get through this, often we talk about āfighting itā but we donāt talk about how to beat it.Ā
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
šāØš
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 šš·
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 š¦ š
Pheo VS Fabulous šØ Coming to you live from the comforts of her 15×25 hospital suite š„
Itās incredible when the mental fog begins to clear just a touch and youāre able to begin to make the smallest of revelations.
Such as, did I just type a sentence?
Or spell revelation without going into one of my “coma like states”?
Or the bigger ones…like, it truly has been exactly a year since I fell off the planet. But did you guys really think it was by choice š ?!
Warning: things may get a bit sassy while my brain function is working, I’m not letting this opportunity waste ā ļø
Do you think I would devote my entire personal life to opening up about this disease and then suddenly withdraw that responsibility unless it was for the fact that I was too sick myself? …
I made a promise, a vow if you will, and I HAVE every intention of keeping it: to not let this cancer take my āFabulousā
….Then, what good is it if thereās no one to share it with? PheoVSFab was started for others like me, and others like me seeking guidance for the ones who SO desperately need it. My greatest devastation over the last year has been losing the ability to communicate, not knowing why, and being so confused all the time that I didnāt know how or where to even begin.
Yes, thatās right, updating a status, sending a text message, menial tasks sent me into a š full ācrisisā mode. Eventually leaving it impossible to do just about anything. Depressing much?
Youāre telling me.
I’m just beginning to talk about menial tasks that have to do with blogging, but that was my direct connection with the outside world, also my outlet. I’m not even skimming the surface on how it’s felt to lose further mobility, forget the days of bathing yourself, most recently even the bathroom became a hot date between my husband and I, sometimes even breathing was a chore. When you can no longer sit on your couch, or touch your legs at ALL because you’re in so much pain, when your facial “flushing” is so bad that you feel you’re in an actual oven because your skin literally comes off like an inside out sunburn š„µ , you start to question WTF IS HAPPENING TO ME!
This isn’t Just MY disease anymore.
This can’t be happening.
This can’t be happening.
This can’t be happening.
This disease, my already very weak body, and what will be known as incredibly sneaky symptoms are responsible for yet another impossibly long road to a complicated diagnosis.
But before I get into any of that..
I just want to share one very important thing, without support we are nothing, and over the years Iāve come to have such a massive family throughout the PHEO VS FAB network. YOU guys have kept us alive, and full of hope.
It has killed me every day to not be able to actively participate in helping others. Without being able to do this, I had never felt so isolated. This isnāt me.
I would never distance myself like this by choice.
So, if you DO know someone whoās sick, do everything you can to adapt to them, with them, and for them. Even if it seems they donāt want to, or canāt, they do. They maybe canāt tell you, like literally physically cannot tell you, but they need you. Everybody needs someone. No one can do this alone.
Most importantly, never ever ever ever, give up hope. No matter how bad it gets. Hope is one of the scariest things to have – but itās the only thing worth holding onto, and when everyone & everything else is gone, it will be the only thing you have left.
Hope is something no one can take away from you. Not even cancer.
This disease can change your sight, your mental capacity, your ability to walk, it can put you into so much pain you can no longer move, it will even change who you are as a human being via a shit load of foreign hormones everyday that donāt belong, but it canāt change deep down who you are in your soul. Who I will always be is fabulous – Broken, scarred, bruised, but fab AF and ready to say F you to whatever this new chapter is going to be.
Thatās the thing when you come after a fighter, eventually they WILL find a way to fight back.
Although we are still very early days and don’t have answers just yet — the fact that I am finally in my “super hospital” surrounded by my angels, being taken care of by my specialists, being HEARD, contributing, they’ve already given me the ability to write this blog post.
Iāve been in the hospital now (2018/11/30) for 2 weeks and we are slowly on a road to a very complex and delicate recovery, yet also a diagnosis progress.
Yes, you heard me. A diagnosis. What? Donāt you already have 17 diseases some may ask?
*insert laughter attempt here*
I thought I had enough as well.
WELL Apparently not.
This is what Iāve been getting at.
Some may be thinking, how come no one helped sooner?
WELCOME TO THE DANGERS OF BEING RARE
I have never been sent home so many times to die in my life.
That part was a little depressing.
One year, a lot of Dejavu, endless suffering pain, new fun attacks and a long- but -urgent -semi -coherent drive to Montreal in the end of it all ā”ļø …..
Thanks to MY own personal doctor cupcakes. My Superman. Who I think hasnāt slept in the last year in order to keep me alive and also smiling every day despite the screaming in between.
If youāre going through something similar, whether youāre in early stages of diagnosis, newly diagnosed, or like me, being diagnosed again, and again, and AGAIN.. remember this one thing – no matter how difficult, or how unexpected, eventually… things WILL come together, and when they do, only YOU have the ability to decide what you make of the rest of your story.
Through my suffering Iāve been able to reach out into so many peopleās hearts and lives:
Through my pain Iāve been able to see humanity like you wouldn’t believe. Through all of the trial and tortures Iāve been able to treasure other peopleās proper diagnosis and the removal of suffering.
Through the tears Iāve laughed harder than Iāve cried, and seen more beauty in darkness than I can ever describe. There is so much in the world that is to be discovered through these miracles, we just have to be mindful.
Instead of running around for last minute gifts, decorating the tree, attending fabulous parties…
The tradition we have manufactured the last three years is driving through snow storms hours away, telling each other everything will be okay, waiting for treatments that will dominate the rest of our year to come… and hoping the magic of Christmas will just somehow make everything better.
Each year I watch the first snow and it’s my symbol of hope…
I imagine that snow falling on me and just washing away everything I’ve been through in the previous year, starting anew.
Each year I wait for Christmas to allow those new beginnings; a new chance for me to heal, be in less pain, for my husband to suffer a little less.
…Back to reality
Like clockwork, my cancer always progresses to its worst state in the months following up to the end of the year, until I can’t take it anymore, and we are forced to take action. Most likely because I’ve done treatment all year long, and it’s my body’s way of saying enough is enough … or hey, why did we stop?
Either way
All of the tests, pain, investigations, right before Christmas.
“Do I really have to travel now? we’re days away!”
“We also need to know what’s wrong with you, and we’re not taking any chances, your condition has been too bad lately”
“I know. It’s just so frustrating how this happens every year”
True. I’ve felt awful as of late. Actually, Awful can’t sum up how I’ve felt.
This year is a little different…
I’ve done a year of (P.R.R.T) treatment that’s made my cancer worse.
This IS the time to go and figure out what to do, where to go from here, there could be NO options for me, but I simply don’t believe in that š«š
…There’s so many quotes out there
“Create your own happiness”
“Be your own sunshine”…
Well, I say Create your own Fabulous.
There’s ALWAYS something else, the question that always remains… are YOU willing to fight?
The answer is always yes.
The days leading up to my appointment…
I made a choice; my body had been fighting me hard, new chest pains, breathing trouble, my tumors alternating between pain crisis and adrenaline outbursts every hour.
….I was done
Which led me to my choice, do I abandon who I am, use the one opportunity I have to leave my house in weeks and go out looking as shitty as I FEEL?
Why should my outside match my insides?
Do I say F you Pheo and try and feel like my normal self as much as I know how? As much as every part of my body is telling me I can’t, what’s the point, just go like you are, it doesn’t matter.
The ‘normal’ me that brightens up those cold white walls, the me that regardless of the dark cold stormy weather, I bring that sunshine, the me that laughs off anything because I’m ready for everything?!
Cancer is still going to be there despite the way I look, but it makes me FEEL a heck of a lot better when I don’t look like I have cancer š
So the next time you’re dreading those cold white walls surrounding you, you’re anxious for that inevitable news, you don’t want to get that scan…
Don’t take that extra hour of sleep
put on that darker shade of lipstick
curl your hair
throw on a bit of mascara
gurrrl contour and bake that face if you feel up to it
Go all out! šāØš
I didn’t forget about my guys!
Give yourself a nice shave
wear that new dress shirt you were saving
gel your hair
put on a light (hospital friendly) cologne š
Do whatever it is that makes YOU have a bit of extra confidence & less sicky feeling šš·ā¤ļø
Most importantly, remember….
āFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!ā ā Pheo VS Fabulous
Are you guys following my new FACEBOOK and INSTAGRAM?! šš¼šāØšā”ļøš¤ FB: Link ā”ļøšø Insta: Link @mirandasimard
Pheo vs Fabulous 