I feel like I have so much to discuss since yesterday’s appointment, so here we go. NET CANCER DAY has really got me thinking a lot about how much responsibility falls on us as the patient. I’ve always known this, and I often discuss how the information I share relies on us (the patients) to advocate for themselves in an unbelievable way
I’ll be giving a bit of a health update, while sharing how I prioritize multiple symptoms and conditions
The difficulty of living with more than one health condition is having to navigate which is most urgent. This can be dangerous and counterintuitive for the overall picture and quality of life for someone with chronic disease.
I went to see my palliative care doctor, who is also my family physician. Those of you who know our past with palliative care has been rocky at best.
Anyway I like her, I trust her, and she was the only one we continued with for my local care.
There was a lot to go over, and so already that can be overwhelming for both of us.
I typically talk about my concerns in order of urgency. I also try not to be rushed and I do make an effort to lead with what I’d like to prioritize.
discussing multiple concerns…
Normally doctors appointments begin with going over what’s happened since last time. This ends up taking up the bulk of the time, leaving little room for what’s currently going on. Honestly I had too many new issues of concern to discuss so I quickly dived in, not leaving room for previous updates
First I had to address my breast health, she did a thorough exam and agreed with my self exam findings. She ordered a mammogram and marked it urgent. Good that it’ll be quick, bad that it’s considered urgent. I requested there be an ultrasound with it due to my age.
I wouldn’t have known to ask for ultrasound with it if not for so many #breastfriends sharing their stories. I always ‘feel it on the first’ and that helped me to identify when something felt different.
I had brought up my concern at my last appt with a resident before seeing my specialist. I wasn’t laying down when she did her super quick ‘exam’ and if I had relied on her “there’s nothing” I wouldn’t be having this investigated at all. You can see the importance of self advocacy in ALL medical situations. Following your gut instinct and pushing for answers is essential for your health
Young women’s breast health requires a different approach, and so ultrasound is recommended as a supportive measure. We talked about the possibility of a breast MRI as well, but are starting here. I am used to not reacting before something is actually real or concrete. Still a little scary tho!
With #netcancerday on my mind I informed her of the high rate of NETs that can be in other parts of the body such as the breasts (always an advocate!)
I will be referred to a dermatologist for some issues with the skin also. She suggested the use of antibiotics to try and relieve the recurring skin issue I have under my breast. I declined, as I reserve antibiotic use for EMERGENCY matters.
My medical resume came in handy at this appointment as she asked which medications I cannot take or am allergic to. Sometimes we think we don’t need these resources because it’s a doctor we are used to or not a big deal. ALWAYS bring your medical resume. I was able to hand her the sheet of contraindicated meds with mast cell activation disorder. You can find that here
It was feeling like a lot already at this point, but there was still other matters to deal with. We discussed the progress or lack thereof with my painful twitching and spasms. My upcoming MRI for the brain to investigate further and how I didn’t vibe with the movement specialist 😂 but I quickly veered back to the current unresolved issues at hand. Breast, lymph, feet. Like a mantra in my mind, making sure I didn’t forget what I’d come for
I asked about the possibility of lymphedema in my left arm, since it’s never been brought up at a single appt for the last several years. She looked at both arms and immediately saw a difference in size. I pointed out how the skin sort of puckers inward and how it’s always been very painful to do blood pressure on the left. She agreed with the strong possibility of lymphedema. I asked about the possibility that it can be impacting my abdomen as well since I’d had such an extensive de-bulk surgery. She said she’s never had a patient with it but it’s a possibility
I’ll be referred to a local lymphedema clinic.
Last, I brought up my chronic foot pain. I explained that this one really has me worried and I don’t have any idea what it could be in relation to. Things like this are always a bit tricky because we have to ask if it’s related to my existing conditions. I haven’t had any luck connecting the dots in the patient community. My endo tried a complex B vitamin to see if that would help, but I’m still having the issue.
First thing I am asked with each concern I address “have you talked about this with your specialist?” it happens every single time. Each doctor asks if I’ve talked about it with someone else.
I get frustrated because when I’m at my specialists… they need to focus on their specialty! So they often ask if I have a family doctor. With complex medical issues and multiple concerns, there’s a lot of ping pong as I like to call it. Which is why I often bring up the most urgent issues to each doctor. I then see who’s willing to help or what their opinion is. It allows me to get multiple opinions and saves everyone time
I do get a bit tired and upset when it’s always me that has to find everything. I try to think back to a time the onus didn’t fall on me to find answers, I can’t recall a time that it wasn’t like this.
A lot of it boils down to 2 things, when you are rare and medically complex… we deal with order of urgency. Which means the less urgent matters gets swept aside until there’s time to deal with them. But there’s never time, so you have to eventually make it a priority. PAP tests, women’s health checks, and regular labs for vitamin and hormone deficiencies are often not done.
A lot of the sweeping aside ends up turning into bigger issues later on. It can become the things that impact our quality of life the greatest. Ignoring small issues adds up into big problems. It ends up being what creates other advanced issues due to lack of treatment or care early on.
For example, my endometriosis diagnosis had been put off until last year. It meant not doing regular PAP tests, because I am treated palliatively. I was asked verbatim “would you really want to know…?” meaning: do I really want to know if there’s something else wrong?
I’d like the opportunity to deal with whatever is going on with my body. Putting my head in the sand saying “I’m guess I’m dying so LALALLAL” that’s an unhealthy and incorrect approach to palliative care or ANY care for that matter
By the time I got answers I had been suffering with unimaginable pain for over 10 years. Pain that was always blamed on the cancer. I was diagnosed with advanced stage 4 deep infiltrating endometriosis. It can’t be cured or surgically removed. I have to just live with it and try to manage the spread with hormone therapy AND pay out of pocket for uninsured pelvic floor therapy to manage pain. So you see, these ‘lesser issues’ can wind up being what impacts your life and pain levels greater than anything else
Quality of life improvement for me means taking care of root cause issues and treating what needs to be treated. We can live long lives with reduced pain
So this is where I’m at currently with just the appointment from yesterday. I won’t know what my cancer is doing or not doing until later in the year – as those labs take a long time. I will have to get imaging in the new year so we won’t have an up to date look into that until 2023 for now.
This is why I am prioritizing all these other concerns. While putting a focus on improving my baseline health. I put a constant effort into regulating my nervous system, managing stress levels, and doing daily healing practices of my own
I do what I can with what’s in my control, I realize I am doing a lot at once and it’s time to be patient. So I can begin to see the results of all my efforts.
I got upset yesterday seeing that I am rapidly gaining weight with no cause again. This becomes an issue because it’s happened many times with no answers as to why. Unexplained weight gain is often hormonal, but that doesn’t narrow it down for me. We know it’s because of the excess stress hormones – but In 12 years no one has been able to identify which. Why it happens suddenly when it does, and so I’m determined to do it myself. With the next round of labs I will be able to see which level has increased.
I will also request to have my inflammatory levels checked, insulin and leptin resistance, hormone deficiency, food intolerance, and vitamin deficiencies. Any and all things that can be related to weight gain. I had requested (non specific) labs to be tested with her, but she refused on the basis that we need to have a specific reason we are looking for. Or else they can find issues we weren’t trying to find, which I just think is ridiculous. If you have an incidental finding it should be seen as positive. It’s not as if we’re looking for fun without any cause. So fun, right?!
In the meantime, I am reminding myself I am doing what I can. I am doing my best. I wish that someone had told me sooner in my journey to stop focusing on trying to control the things that are simply uncontrollable…
And put focus on what I can
For example: if my body is rapidly changing, creating more resistance by fighting back with restrictive eating and unhealthy movement is dangerous for me.
Instead: learn to love my body in all forms through self compassion and patience. Relieving the pressure and stress this causes until answers come, allowing me to be at peace and letting things just … be
The lesson I am taking away and am sharing with you is that self advocacy is a powerful tool. It can also be overwhelming, exhausting, and feel like a lot of responsibility.
There are times when we have to loosen our grip a little and let the universe, let god, let our bodies, let be.
We have to put a bit of trust into something other than ourselves. That’s what hope allows for, faith, and mindful practice. It’s a delicate balance for our own good and emotional well being
I love hearing from you, you can connect with me:
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In this post I’m going to give you a road map of how I manage with pain with different techniques for severe flare ups AND daily prevention.
I’ve dealt with my fair share of pain, I remember living day to day at a pain scale of 12+ and couldn’t quite get it under control. I truly suffered for years and pain was my primary issue.
I remember not being able to stand because my feet were so sore, I couldn’t sit because my tailbone hurt so much, and I couldn’t comfortably lay down because my skin literally hurt to the touch. I was miserable. But there were things that we learned along the way that helped significantly, so I’m going to share them. But not before I explain WHY 👇🏼
Please always consult your team before making any changes. Integrating new techniques into your daily routine is okay, but removing something without your doctor’s knowledge can be dangerous.
If you didn’t already know, we heavily advocated for a diagnosis of mast cell disease this year. There was a lot of symptoms not adding up with my primary illness… and a lot of red flags over the years for MCAS.
Part of having mast cell disease is a chemical and medicationintolerance. Your body doesn’t like a lot of stuff. So the regular pain management approach that was being used for me at that time, was unknowingly making me worse. Much worse
When you have pheochromocytoma or metastatic disease, pain relief can already be tricky since there’s medications that can make the same hormone expression in our bodies as the tumors. Sometimes making us more symptomatic and in more pain.
If you mix mast cell disease into the equation, it’s a recipe for disaster.
So what did I do? Well first, we had to evaluate if I was on the right medications… or on the wrong ones!
This is a quick emergency reference guide of medications to avoid and that are better tolerated in most cases of mast cell disease. This is from the mast cell society.
So once I fully detoxed from the bad medications on the list, and began life saving treatment for MCAS, I could now begin my healing journey. It saved me, I could now begin to manage my pain.
All that being said, let’s get to pain management!
With such a restriction of traditional pain management, we had to start learning different forms from of relief. I was kind of forced to do so, and I’m actually thankful for that. I don’t think I would have believed how well integrative relief worked if I hadn’t tried it myself. I think that this is something every chronic pain sufferer should know either way.
Mind body connection:
I’m not going to get too scientific, but I was told when I had my very first surgery that the brain will imprint pain.
If the brain gets used to pain, it’s difficult to find relief. Which is why it’s important to understand the link between the mind body connection.
You can’t just say “okay I’ll be really positive and believe I’m not in pain and it’ll go away!” No, it’s much deeper than that.
The more pain we endure, it can make the brain can experience anxiety and depression. Which makes pain worse.
Which is what led me to managing pain in a way where I don’t just throw a pill at it.
I know, it was hard for me to wrap my mind around this too. We are made to believe that medications are the only way of pain relief. Especially in palliative care. But please don’t get me wrong, I’m NOT saying medications are bad, I’m just saying that it takes MORE to truly control pain. Also in my specific circumstances, I didn’t have a choice. With the restrictions on the list above, pain management isn’t easy.
Let’s talk about that sudden, unexpected, all encompassing type pain that makes you feel panic and pushes your body into overdrive. My list may seem extreme, but I promise the more prepared you are…. Quality of life improves significantly.
Through panic tears, squeezing headache, nausea and sharp belly jabs, it’s difficult to give the body the oxygen it needs to calm down. So there’s a few steps to a flare that I follow. Especially if chest pain is involved.
*if you’re alone, you will want to put aside an emergency pain flare setup. So things can be easily grabbed and accessed. If you’re with someone, they need to know how to respond and what measures to take. Either way, perhaps print the following information and keep it handy. I will also include a list of supplies at the end.
1. First, get to your safe place. For me, this is my bed. My bed offers me the most relief, and I can adjust to how I need to position myself.
2. Elevate your legs, I have an adjustable base, which allows me to put myself in zero gravity with 1 touch. This has been a life saver for me for many reasons, but not everyone has this. Keep some firm pillows or preferably a wedge nearby to quickly access if your bed is not adjustable. Putting your legs into what they call ‘zero gravity’ position means your legs are higher than your heart.
120° angle bend at the hips puts your body in the “zero stress zone”
Spinal vertebrae are decompressed and muscles are relaxed
Airway and nasal passages are opened up
Elevated legs reduce stress on the heart
Heart and stomach are slightly below the head and knees
I can literally go on and on about the benefits of zero gravity, which is why I have an adjustable bed. In a flare, it will open your airways, reduce the stress on your heart, and put you into a reduced stress zone for pain relief. This is scientifically proven.
3. Once you’re in your safe zone, your legs are elevated, you will begin to feel just a tiny bit more calm. I promise. Reducing the feeling of stress and panic to your body will already alter your pain receptors, allowing your body to be less tense, and begin to think more clearly.
4. Heat and Cold Therapy: In a flare state, most likely you will experience sweating, flushing, and added discomforts. Which brings me to my next point: heat and cold therapy.
Having a cooling band for your head will help relieve the inevitable headache you will experience, and it will also cool your body temperature. Cool therapy also can help with nerve pain. So having more than 1 cooking band is a good idea. You can even use a cold wash cloth. Whatever works for you.
Heat therapy is typically a heating pad, or some sort of heat relief. So again having it ready and easily accessible is important. I always have my heating pad rigged and ready to go inmy bed.Always plugged in! The more prepared you are, the smoother these flares become.
5. Massage: most of you are probably reading this and going “well I don’t have a personal masseuse!” 😂 and I get that. I promise, I got you!
IF you do have someone able to gently rub your body to relieve the tension the pain is creating, then do so. Not all types of pain allow us to be touched, but if it’s not the yucky skin pain, then go ahead with light massage.
If you’re a caregiver reading this, the power of a light touch is incredible. Even if it’s just to say “I’m here” without words. This is dependant on your partner or loved one, but I find it very helpful to have my head rubbed lightly during this event. It’s helpful for the body to go into a relaxed state, loosens the muscles, and can alleviate some of the tremors.
So what do you do if you’re by yourself? Well you guys KNOW how much I love Amazon. (Hehehe)
Introducing the massage mat: it can even be heated! Which eliminates the use of a heating pad. So many of you have asked me if I know about a heating pad that hits all areas of the body, so I did my research, V 😉
6. Guided Meditation or sound therapy: okay, I’ll ask you to keep an open mind here. I know a lot of us hear the word meditate and think something entirely different than what it is. Meditation simply means your mind is focusing on a particular thought. Learning how to meditate is incredibly important because if we circle back to the first step, you’re much more likely to achieve a state of reduced panic if you’re able to practice mindfulness. And that’s what meditation is, practicing mindfulness. I had NO idea how to meditate, and honestly? I like to take the guess work out of it. Which is why I use a guided meditation practice. I’m sounding all fancy, but literally just search on YouTube ‘guided meditations’. For this specific circumstance, I will link the one that helps me in a pain flare. It’s short, it’s specific to pain, and it’s very good at calming me down and putting me to sleep. Sleep is the primary end goal in a flare. I will talk more about the benefits of meditation later.
*Once you are able to achieve this mindfulness, you can use this focusing technique during painful procedures, scans, and any situation where you need to disconnect.
Sound therapy means that if you’re unable to listen to someone speak like in a guided meditation, you can use sound healing instead. It operates on a frequency that can offer different forms of relief for your body. Here’s an example of a pain frequency:
7. This may seem obvious but keeping your flare up emergencymedications close to you in different parts of the house can make all the difference. I keep a mini medication kit beside my bed since that’s my safe place. If I’m experiencing ‘that type’ of headache, or anything flare related that can be calmed with medication treatment, I take it before doing anything else. That way it has time to sink in while I’m trying to calm my body.
If you haven’t already noticed, the primary goal of pain management during a flare is to calm the nerves, the nervous system, the mind, it’s all about the calm!
8. At this point we should have achieved a state of exhaustion, the pain should be dying down, but we have nothing left in our tank. So it’s time to sleep … sleep is the number 1 restorative factor in our overall health and actually helps with daily pain control. If you get a restorative night’s sleep, your body and cells regenerate and heal. If we reframe our brains and pretend like you’re going to pay 120$ for some special exclusive healing therapy, we might be more motivated to get our money’s worth!
So what we just went over was mainly considered pain relief type practices, because they’re meant to reduce pain NOW. But what I’ve learned I’m trying to manage my pain? It’s a full time job!
Daily healing takes time, dedication, education, it can be expensive, and can seem daunting to do on our own. But the way I’ve explained it, I’ve used a lot of selfhealing methods to try and remove some of that burden.
Pain management is the practice of constant self care and prevention techniques, it’s treating your body like the precious vessel that it is. It’s self care, it’s nutrition, it’s movement, it’s mindfulness, it’s everything we discussed above and much much more.
If you rolled your eyes at any one of those things, I get it. I really do. I am NOT saying “get some fresh air and do some yoga” and you’ll feel all better.
I am not minimizing pain nor am I saying it’s a one size fits all, I’ve been exposed to chronic pain all of my life in various forms. I’ve grown up witnessing my father suffer in chronic pain from a work accident. My sister having been hit by a car and in an extended coma when I was 12… I’ve seen pain. I am a 30 year old palliative woman, I GET PAIN. I promise I have the life credentials.
But what I am saying is that… the thing they don’t teach us in the pain clinics or when people are prescribed heavy narcotics, is that our brains play a powerful role in how we feel. The mind body connection is so important, and once understood and used correctly… can be life changing.
I’ve gotten angry at people for telling me to take a walk or get fresh air. Especially when I was physically unable to do those things a lot of the time. It won’t cure you, it won’t make it go away, but in combination with other daily habits can really help us toward managing our mental AND physical well being.
My husband showed me that no matter what your circumstances, you have to continue to do the things you love. The things that bring you enjoyment and calm. So hopefully I can be that person for you.
If I couldn’t leave bed, I’d get outside in my wheelchair. Feel the vitamin d in your face for a moment, breathe the fresh air. It’s just an important note to change your surroundings and not fall victim to your illness.
My daily management road map:
You’re going to see a trend here, the main goal for management is to manage your stress, your mood, your mental well being, your body’s inflammation levels, physical activity… but overall, the mind plays a major role in pain management strategies. Let me show you:
1. Nutrition: If your condition has any link to food triggers or intolerance, get to know them. Study them inside and out and start eliminating. Don’t wait, I’m telling you! I wish I had done this sooner. Start writing down what you eat and how you felt afterwards. I knew with pheo I couldn’t have foods high in tyramine, but I didn’t really understand the impact. I knew with MCAS I couldn’t have foods high in histamine. If you’re unsure of your condition, an elimination diet could be helpful. Then once you reintroduce the foods one by one, you will see what you react to.
Understanding the role of nutrition is probably… one of the things that impacted my overall health the most.
Weight related pain caused me extreme joint pain, weakness, skin sores, inflammation, clothing discomfort. My conditions kept me gaining and incredibly inflamed, swollen, sore. Until we finally figured out what diet worked best. For me and my angry tumors, my broken mast cells, and my AI, the best lifestyle I can follow is: low carb, sugar free, low histamine and low tyramine life.
Anyone can benefit from eliminating processed foods and sugar, but it’s a personal choice and can be difficult when trying to manage everything else. Believe me, food is a great source of comfort for us. Hello, doctor CUPCAKES. But when I saw the difference in my pain and even my mood? I wish I had known sooner
If you don’t know where to begin, just stay in the fresh part of the grocery. Whole foods are vegetables, eggs, meats, and anything that isn’t processed or canned. I know this sucks, but eliminating alcohol completely is so important with this disease. There’s really no good alcohol and it will cause an immediate reaction.
2. We talked about meditation, so if you can, incorporate it into your daily lifestyle. Like I said, start slow, and easy. Open YouTube, type ‘guided meditations’ and choose one that speaks to your mood at the moment. Anxiety, stress, grounding, chakra balance, pain, overactive mind, sleep, self love, there’s a meditation for just about anything. Tips to incorporate it into your day: wake up and do a quick 5-10 gratitude session. Mid day when taking a nap, choose one that’s a little longer to rest to. Then when you go to bed, put one on for sleep. That’s 3 right there!
3. Daily mindfulness: because I’m often asked what my daily habits are and what is self healing… I use an app called aura, it curates coaching sessions, CBT therapy, breath work exercises, meditations, all specific to your needs. It’s a quick and beginner way to learn how to connect with yourself.
Try exploring some self healing books, some topics I recommend are: PTSD recovery, gratitude practice, mindset, anxiety control, and self care. If you’d like me to share my reading list let me know in the comments and I will dedicate a post to it.
If you’re new to practicing gratitude, order a 6-10$ gratitude journal on Amazon. This would be a good place to start. Acknowledging what we’re grateful for helps dig us out of a rut, it improves our way of thinking, and it allows us to see the good even when things are very bad. Law of attraction is real y’all!
If you’re asking yourself… what does this all have to do with pain? You’re not wrong for asking, most people connect pain relief with traditional practices and physical actions. But for management it’s important to be managing your mindset, mood, outlook, and coping strategies. It’s all linked in one way or another, but I can’t do more than offer you the guidance and assurance that it works for me. It’s up to you to make the decision to include what works for you.
Another way to practice mindfulness is to listen to music, get in a habit of putting on some headphones when doing any task. Listen to whatever speaks to your mood, anything to boost your happy hormones, am I right?!
4. Movement: okay this is a big one. It’s also hard when you’re unable to move much at all. I’ve been there as well. But movement is important for circulation, for inflammation, and pain relief!
Some things you can do if you’re sedentary: physio, physio, physio.
Think of when you just get surgery, the first thing they have you do is walk and sit. Think of it like that.
You can do physio in bed, you can do physio from a chair, and it doesn’t always have to be formal. I did my own physio for months with exercise sheets provided to me by the hospital. Ask your physician for some physio exercises, or look for your own and ask if it’s okay for you.
I also used to lift one pound weights in bed, just to move my arms around and not completely lose my muscle mass. We would do leg exercises while I was laying down, and I began slowly walking more and more.
Laughing, smiling, and bed dancing helps too.
If you’re moderate, you can incorporate movement by walking. What I like to do is give myself a daily steps goal, no I am not running a marathon so I won’t achieve 10,000 daily steps like most people, but I cried the day I hit 1000. Some days I would only get to 68 steps, so even if you increase that goal to 100, it ALL COUNTS! Now sometimes I can even get to 5000!
YouTube has a ton of free light impact workouts, physio routines, and light strength training. I love body by Amy, and I also really enjoy beach body on demand, they always include a modified version which I appreciate. I always do the super modified version!
If I’m walking – I’m dancing. I may look ridiculous, and I love it! I dance in the kitchen, I dance brushing my teeth, I dance doing my skincare. Any way to get some movement in and my blood flowing! Also, being silly helps you smile and helps others around you smile. And happy hormones offset angry hormones, well that’s what I tell myself anyway.
This may sound taboo for some but … sex! Sex is not only movement, but it’s a way for the brain to create natural endorphins. Making your body less stressed, happier, and reduces pain. Cool, right?! And remember, you don’t always need a partner for sex! Hint hint. I’ll leave you with that thought. In all seriousness, I know when we’re feeling blah and in pain the last thing you want to do is have sex. Sex can be painful for a lot of us, but it is good to keep pleasure in mind because it’s a natural way of creating pain relief and improved mood. Swearsies!
Good old walking, but make it enjoyable. Go somewhere nice, go to the water, the beach, the woods. Switch it up, let it be good for the mind and the body at the same time.
Last but not least, I try as much as I can to incorporate movement by doing everyday house tasks. I’m not able to do a lot, but unloading the dishwasher or preparing a meal can really change the way you feel about yourself. It makes me feel accomplished and it reduces my stress levels. And if you dance while you’re doing it, it’s a double movement bonus!
5. Sleep: we talked about sleep, but we have to make it a habit in order for it to be helpful and restorative. We don’t just want to pass out from a flare or when we’re delirious. (This was me for many years) once I got the proper treatment for all of my illnesses, my sleep improved. The night terrors went away, and the adrenaline panic jumps stopped.
Some things we can do to improve our sleep habits are…
-Clean sheets and comfortable bedding (you can’t beat that ‘hotel’ feeling’!) make every day like you’re on vacation in your own home
-Going to bed 1 hour earlier per night. (I have a sleep alarm on my phone that tells me when to wind down)
-meditate to go to sleep, or listen to a sleep story, or even just put on some calming sounds, I promise it works!
-if you experience sleep apnea or breathing issues, it’s important to participate in a sleep study and be treated
-zero gravity position. Yes! You can sleep this way. It’s not just for flares. Having a slight elevation opens your air ways, increases circulation, and takes pressure points off your back. It also helps with acid reflux sufferers. All of which wake us up frequently. Try it, thank me later!
Please keep in mind that sleep includes rest, so although we will be meditating daily, and doing mindful practices… it’s not sleeping. Our bodies need A LOT of rest, my nap time is 3pm sharp! Don’t ever feel guilt for sleeping, for resting, but I recommend really resting and not just watching tv or scrolling on your phone. Our bodies need time to restore, and yes nightly sleep is vital for this. But so is daily rest!
Especially if you’re feeling down or a depression creeping in, your body may require more resting time than normal. You will know when, just listen to the cues your body gives you.
6. Daily tracking: get used to writing things down. Download a diary app (orange diary, or diarium) or get yourself a notebook. The more you write down your symptoms, your triggers, your moods, your patterns, your activities, the more you will see what’s helping or hurting. It’s also helpful for your medical team and YOU! Think back to your last appt, Were you struggling to describe the type of pain when you were reliving it to the doctor? This is why tracking it is important, in real time. It gets to be a habit and it can be what literally saves your life.
7. What brings you joy? You guys, I can’t stress this question enough, I saved it for last for a reason. Not because it’s the least important, but because it’s the MOST important. Living with life altering illnesses can be all encompassing, most of us only go out when we see our doctors. Or for treatment, and if we’re really lucky, the grocery store. So I can’t stress this enough, what do you LOVE doing? What makes you happy?
I understand you may not be able to zip line or bunjee jump, but there’s always a way to adapt to your previous passions. And also find new purpose! We don’t lose who we are because we become sick.
Remember when I said my husband taught me it’s possible to do the things you enjoy when you’re sick? Well, it’s sometimes difficult, and comes with extra planning and help… but it’s do-able.
I’ve also found that the simplicity in life has brought me great joy compared to before, I can appreciate just about any moment or see something beautiful.
It’s all of the above daily healing practices that’s helped me with this. But we all hold the ability to see things in this way.
However we HAVE to do things that bring us happiness, it’s what gets us from one day to the next, and it’s what helps us release our minds temporarily from the pain.
Self care is a huge part of my happiness, all of the above is self care. Self care is dedicating time to YOU and your healing. So I am prescribing a big fat dose of SELF CARE to you! That’s why I share so much of my routines, my love for taking care of myself, because it brings me joy. And guess what? When we’re happy, we’re often experiencing a momentary release from the pain!
I personally love this, sharing. I love staying fabulous, and I love helping others. That’s what brings me joy.
I also love unicorns, Starbucks, writing, SHOPPING, Christmas, birthdays, chalet getaways, sunsets, selfies, massages, movie nights with friends, cooking, pedicures, manicures, skincare, makeup, my husband’s smirk, his smile, my dogs, pink things, soft blankets, my bed, fresh flowers, things that sparkle, planners, journals, writing lists, being organized, and … well, just about anything else. Not in that particular order
I’m not hard to please. My point is, think of what makes you happy. Do at least one thing per day that gives you that feeling.
So that’s all folks, that’s my pain relief guide and management plan. You have aced the course! Now you just have to live it. I bet you weren’t expecting what you just read, but living it is the best part!
I always say the best feeling in the world is having something to look forward to. Well I hope I’ve created that feeling for you, planning all the ways you will incorporate these into your life to successfully manage pain!
Someone recently asked me how I deal with the anger that comes with being dismissed for so long with rare disease.
So you just got your diagnosis. It’s hard to know how to feel, right? Thankful that you have answers? Angry that countless times you were told it was in your head? That you couldn’t POSSIBLY have that, only to have EXACTLY that..
Pheochromocytoma/paraganglioma are considered a very rare disease. The diagnostic process is a bit different for rare disease patients, and it comes with a different set of emotions when the diagnosis is finally delivered.
I’m going to talk a little bit about how I personally cope with the emotions that come from diagnosis, and what I do with the anger that comes along with it.
Of course no one wants to be sick, but with the untreated symptoms wreaking havoc on your body… honestly, by that time we are often praying for a diagnosis. Without a diagnosis, there’s no opportunity to heal, to take control back. To do something! It’s a strange dynamic, praying to be told you’re sick. Then the moment it’s confirmed.. we will give anything to be told we’re ‘fine’ again.
My first diagnosis came as a complete shock, I was 19, I’d understandably never heard of pheochromocytoma before. I never actually thought I had a 1 in a million tumor, not once did that run through my mind. I just thought I was just having sporadic attacks that made me feel like I was going to die every day. I was also relieved. I was relieved that I didn’t have to argue anymore, to prove myself to anyone. I was finally going to be able to take control over my body, and get treated. Or so I thought…
My second diagnosis was different, it’d been 4 years since my first Pheo, and I’d never been symptom free. I still dealt with the daily attacks from the adrenaline, and was being told that I was fine all over again. It was like I was stuck in a time warp that would repeat itself every day for years. I was continuously being convinced that I was ‘just’ anxious, that my blood pressure machine was wrong, my blood sugar is probably just low, etc. I heard it all. I still hear these things every day from people around the world.
My second diagnosis was a different experience, because I knew I had the disease, I knew exactly what it was, I just needed the proof. And then by the time I got proof, it was considered terminal. I was now terminally ill at 24 years old. Tough pill to swallow. How am I supposed to feel this time?
There’s no right or wrong feeling. The first time- I felt shock and then the fear of uncertainty quickly set in.
What will my future look like? Will I be able to go back to work? Will I have a normal love life? Will I always be in pain? Am I going to constantly have to be worried about it coming back? Am I going to be treated differently? Do I want to be treated differently? Am I different?
The second time- all I felt was numb, and then anger set in. I was so angry. My husband was angry. We were outraged that this could be able to happen, only… I’d find out later that it happens more than I think
I think I can confidently say I hear at least 1 person per DAY that is going through this. With this specific disease. This incredibly rare disease. It’s been six years since my diagnosis, so that’s a lot of people.
I’m generally a very happy, positive, bubbly-type chatty person. I don’t like feeling so negatively for extended periods of time. Holding onto anger. But I also know now that it’s important to acknowledge your feelings, so that you can work through them. Toxic positivity isn’t a better solution, being positive and hopeful needs to come from a place of true belief. That way the negative emotions don’t become pent up little balls of anger that burst at any given random time.
I initially channeled my anger into taking my control back, my plan? Getting a new medical team. One that would hear me, and be specialized. I needed a miracle team. I felt like if I could regain a sense of control.. I’d be able to feel different. I didn’t know what emotion I was looking for, I just needed to get past anger. I didn’t realize that I’d be holding onto that toxic feeling for longer than I’d like to admit.
It’s similar to the process of grief, you’re grieving your old life, your sense of normalcy, your old self. The ability to do mundane tasks, to relate to others in your circle, in your age group, the feeling of not knowing the importance and impact of living. It’s a hard dynamic for me because I was always so young, and I felt cheated out of a lot of opportunities I KNEW I would be amazing at. We all have things to grieve, it needs to be done.
So let’s talk more about how I regained that control. 48 hours after my diagnosis, I had arranged to see a new specialist, a whole new team. I knew I needed the best, I was 24 and given a poor prognosis. Honestly? I was dying, and they weren’t shy about telling me so. You don’t mess around when it comes to your health, you do anything and everything to change your circumstances.
Securing this new team… it made me feel I had purpose, that I was capable, I felt proud. These emotions are a lot better than anger, am I right?
As I rebuilt trust with these new doctors, fragments of anger would slowly chip away. My fear of not being heard, was slowly diminishing. Time. It takes time.
But what if we don’t have time? I’m terminal, I don’t have time to go through this long process.
Terminal illness isn’t a ticking time clock, it FEELS like that at the beginning… believe me. But I am here to remind you, eventually, with this precious time, your mindset changes.
I decided I needed an outlet for the fear, anger, and acceptance I so badly needed.
That’s when I started my blog, as a way of channeling these feelings into something good. Something with purpose. I wanted to know my experience meant something. I wanted my diagnosis to be an example for health care practitioners around the world. I wanted my story to be told to EVERY single pheochromocytoma patient.
I wanted my words to live on forever knowing they were making a difference.
Channeling your fear and anger into helping yourself? That’s a beautiful feeling.
Channeling fear and anger into helping someone else? That is when those fragments become whole again.
But let’s back up, I’m not saying everyone has to start a blog. What I am saying is that it’s important to get your feelings OUT, write them down somehow. Whether that be a journal, a support group, a diary, or a video blog. Even if you just talk to your camera and never share it! Whatever you feel comfortable with, it’s important to let your story be heard. Even if it’s just for you, this type of therapeutic action is something that for me, changed my life.
I’ve recommended different types of journals, diaries, gratitude practice, all different sorts of ways of expressing feelings to many people over the years: I’ve never heard someone say it didn’t help them in some small way.
Here’s the hard part: forgiveness. Eventually, down the road… I forgave everyone who I was still holding onto anger towards. This is NOT an easy step, I won’t sugar coat it. To get to this point, it’s a lot of work. Self discovery, trauma healing, mental health practices, growth. However, actually doing it? Meaning it?
It’s so unbelievably freeing.
I know I probably don’t need to remind anyone of this, but forgiveness is not for the other person. It’s for YOU. It’s so that you’re not suffering with those toxic feelings all your life, those fragments that are making you feel broken, while they are out in the world not even giving it a thought. You don’t have to personally forgive them, you do it however you want to. Whatever makes you feel safe.
It can be through prayer, you can again write it down, or just sit alone with yourself and say it aloud. You can role play with someone you trust.
I personally did just that, all of the ways. I had a lot to get off my chest, a lot of years of trauma and forgiveness. I only recently got to this step, after 6 years. Everyone’s time line is different, and that’s okay. Even if you decide, “no, I can’t possibly forgive someone who did this to me”
That’s okay too.
This is YOUR healing process, and you do with it what you decide. I can only let you know what I did, and what helped me. Made me feel whole again.
I’ve had a lot of people come to me and say “I could never do that”. I’m with you, I’ve been there. I said that repeatedly in the beginning, then it shifted to “one day, I think I’ll be ready” and then one day, I knew I was
So as you can see, it takes time, no one situation is a one size fits all. However we are all still very similar, and much closer than you think. That’s what being part of a community is. No matter what type of diagnosis you’re receiving, it’s going to change your life. It doesn’t have to change you, the person you are inside.
“Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!” – Pheo VS Fabulous
I’d like to send out a personal acknowledgement to everyone surviving and thriving today. Being national cancer survivors day, I thought this would be the perfect time to share this incredibly important article.
When people hear cancer survivor, they think past tense, someone who’s ‘beat’ cancer and is alive today.
A survivor is someone who’s been diagnosed, actively in treatment, in remission, and someone like me, who’s a mix of all of the above. Someone who’s surviving every day, never having the time where they can say it’s in their past. But they can say –
35 things we wish you knew about having a rare cancer, chronic disease, or rare illness.
Here’s the thing, before I start… I want you to know that I’ve asked hundreds of patients fighting this disease and others to chime in on what we wish you knew. This post is not entirely from my perspective, but it’s all the things I feel.
It’s important to know that we all don’t fit into one neat little box. We all have our own perspectives and things that bother us and things we wish you knew.
This is my effort to put as many of these together and help as many of our friends, family, and support systems understand where we’re coming from living with this disease.
It’s hard enough to live with cancer, chronic illness, or rare disease, but it’s even harder to not be understood.
We know we’re complicated, but we didn’t ask to be this way.
I sincerely hope that this brings you a level of comfort knowing that there are ways of communicating with your loved ones, if you just take the time to understand. Having a rare disease requires knowledge, patience, and a lot of understanding.
You may not always have the right thing to say, but it’s best to just ask.
So, here goes nothing.
1. I wish you knew that I’m in pain every.single.day, even when I don’t show it. It’s always there. Imagine waking up every single morning and every part of you hurting… with no hope of it going away, and every movement you make, it just gets worse throughout the day.
2. I wish you knew that I hate answering “how I’m doing”. I feel like you don’t want a long winded answer, but that’s often all I’ve got. So I’ll often tell you “I’m fine, or okay” just to answer. I wish you’d ask something specific so that I can be honest.
3. I wish you knew I don’t feel “brave or strong”. I didn’t have a choice to wake up with cancer or any co-morbidities. I’m not brave because I have cancer, I’m not strong because I have cancer, I was forced into this life.
4. I wish you knew I felt uncomfortable when you say I’m an inspiration because I have cancer. If I’ve done something to deserve it, and it’s well intentioned, I appreciate it. Actually, I appreciate it regardless. But I just wish it wasn’t such an automatic response to having cancer. Having cancer doesn’t get to all of a sudden make you not a shitty person if you are one 😂 it doesn’t immediately make you an inspiration. At least, we don’t feel that way.
5. I wish you wouldn’t say you’re sorry when I tell you I have cancer. I don’t know how to respond and it makes me uncomfortable. It’s like we’re forced to say “it’s okay”, but… it’s not okay. Please try and be sensitive to speaking to someone with an illness, it’s uncomfortable for all involved but it doesn’t have to be. You can be sorry, it sucks, but maybe ask us more about our disease, open up a dialogue to understand us better. We appreciate that more than being felt sorry for.
6. I wish you knew that not all pheochromocytoma is cancerous, but even when it’s “benign” it’s just as dangerous and often can turn into cancer. The C word is what scares people, but it should be the P word that frightens you more. Pheochromocytoma is the disease we fight. Benign, malignant, it doesn’t matter. It’s one of the scariest diseases out there.
7. I wish people would understand that just because I had surgery to remove the pheochromocytoma tumor, they often do and will come back. We’re never really “done” or cancer free. If it is cancer, we live with it for life. It’s a terminal illness. Despite all the treatments and surgeries we get, it’s a way of managing the disease, not curing it.
8. I wish people understood how many triggers there are with this disease. My tumors literally hate everything. My skin feels like it’s on fire within 30 seconds of sun exposure. I can’t take a hot shower without having an “attack”. I can’t walk far or fast without provoking an attack. I can’t get too excited. I can’t get stressed. I can’t blow dry my hair without being soaked in sweat. I sometimes can’t do the dishes without provoking an attack. It can be something big like exercising or something small like getting dressed, but it can and will happen without any notice. There are certain foods we can’t eat because it’s a trigger. Loud noises. The list goes on, it may be helpful when we tell you this that you do a bit of research yourself to understand us more and what we go through. Maybe start here.
9. I wish you would look up my disease every once and a while before exhausting me. I’m happy to talk about my disease, I’m happy to explain it, but I don’t want to have to repeat myself 1000 times because you refuse to do the research. If you care, you should want to know more.
10. I wish you understood that my cancer is different than other cancers. These tumors are different than any other tumor. They are adrenaline secreting tumors. I wish you understood what impact adrenaline has on the body. It’s debilitating, it’s dangerous, it’s lethal, and can be deadly. People hear “we produce too much adrenaline” and picture a scene from an action movie. No, it’s not fun. We don’t have superpowers, and it doesn’t give us more strength. It’s the opposite. Read here about what having an attack of adrenaline is like.
11. I wish you understood that even if I look perfectly well in photos or even in real life, you should see my insides! It takes many hours to look “normal”. We do it to take the pressure off of ourselves and you, but it doesn’t mean we’re even close to being ok. Many people do this with chronic illnesses, so that they can feel more like themselves. It doesn’t make them any less sick, in pain, or uncomfortable.
12. I wish you knew how uncomfortable I am when you say “well I hope they fix you soon” or “you’ll feel better tomorrow”. These comments can sometimes be belittling to our disease because they can’t “fix” us. We won’t feel better tomorrow. We will never be normal. These are just facts, it’s not negativity. If you don’t know what to say to someone with this disease, try to pick up on their feelings, responding with “wow that must be rough on you” or acknowledging our pain isn’t a bad thing. It doesn’t always have to be cheery sunshines.
13. I wish people wouldn’t say “I lost the battle to cancer” or anything along those lines. Cancer didn’t win. Everyone dies. When someone dies of a heart attack, they don’t say “the heart attack won”. Fighting cancer isn’t a choice and shouldn’t be summed up to determine our strength or how well we fought it.
14. I wish you understood that getting a good nights rest or going out to get some fresh air isn’t an option for me sometimes. Yes these things feel good and I hope I can do them more often, but it’s not going to magically make me better. Please understand that this disease is more complicated than even the doctors understand, so no amount of nutrition, exercise, fresh air, will sort us out.
15. I wish you knew how much I just want to live a normal life again.
16. I wish you knew how different I feel and out of place I am.
17. I wish you knew that it will never be normal again.
18. I wish you knew the fear I feel even after the disease is removed, we have to wait in fear as it comes back one day.
19. I wish you wouldn’t avoid me because you feel uncomfortable talking to me. There are so many resources to be able to talk to a friend with a chronic illness, cancer, or any disease. A true friend will never be disappointed in what you said, but we will help you better understand it. We’d rather you learn with us rather than cut us off completely.
20. I wish you knew how much I appreciate when you say “no matter what happens, we will get through this”
21. I wish you knew how much I appreciate when you say “I’ll always be there for you, no matter what happens” and live up to that.
22. I wish that if it’s too hard for you to be there for me, you’d explain it. If you’ve lost someone with cancer and it’s hard on you to relive it, I wish you’d say that. We often blame ourselves when we lose friends gradually and never know why. We beat ourselves up about what we did wrong. We’re incredibly lonely. It’d be nice to have an explanation or try to talk things out, even if it’s difficult.
23. I wish people knew how many comorbidities this disease causes. High blood pressure, heart failure, adrenal insufficiency, chronic pain, kidney disease, bone disease.
24. I wish our doctors would actually SEE the patient in front of them. Understand that we are different. When I get my blood pressure taken and it’s in the “perfect zone” but for ME it’s actually considered high because of the amount of medication I’m on to lower it. Listen! When we tell you what the Pheo does to our bodies and what an attack is, listen! Learn from us. Know that we’re a different breed of disease. Take us seriously, we often know more than the medical staff. Just because we appear to be okay, and don’t fit in your medical mold you’ve created, doesn’t mean we’re not sick! This would prevent a lot of misdiagnosed patients, and speed up the diagnostic process if you’d just LISTEN to us.
25. I wish that you knew behind my smile, there’s so much pain. I’m exhausted, I still have to go on everyday and live my life despite this illness. But I’m tired. Not just take a nap tired, but physically and mentally exhausted from living with something that’s trying to kill me everyday.
26. I wish you knew what living in “constant fight or flight” meant. Never being able to shut off. Always having adrenaline pumping through your veins.
27. I wish you understood that your anxiety is not the same as what my anxiety from this disease feels like. I’m not talking about normal anxiety that anyone can get, I’m talking about chemically induced anxiety panic that is caused by an overflow of hormones in my body. It’s like anxiety on steroids mixed in with impending doom and a dash of dread.
28. I wish you knew how much this disease alters the trajectory of our lives. We can’t plan, we have to live minute to minute. We’re often told were lucky because it’s a slow growing illness and so even if we die, we’ll have plenty of time. Excuse me?!!! The level of ignorance here is just inexcusable.
29. I wish you’d understand that under all of the things I’ve talked about today, I’m still the same person! I’m still here. Treat me that way. I still have hopes, dreams, I still like the same jokes, I still have the same interests. I am not my cancer. I don’t want you to only treat me like I’m “normal” when I look “normal”. I want to be treated normal even when I’m at my sickest, especially when I’m at my sickest!
30. I wish you wouldn’t ask “how are you?” But “is there anything I can do for you?
31. I wish you knew that even after taking 20 different medications, I don’t feel better. They allow me to get up and semi function, but they’re not a cure.
32. I wish you understood there isn’t a cure.
33. I wish you understood that I can’t control my anger or emotions. It’s not me, it’s literally my tumors deciding what mood I’ll be in at that particular moment.
34. I wish I didn’t have to talk about any of this.
35. I wish I never heard the word pheochromocytoma.
I hope this helped get a glimpse into our world, and I hope you can use this as a resource with your friends and family when you want them to understand more.
If there’s anything I missed, or anything YOU want to ask, please leave a comment down below and I’ll do my best. Don’t forget to share
Five years ago I was told I had 1-5 years to live. I sat in a white office with the same diabetes posters and bland medical facts I had looked at several times, and contemplated how angry I was. Angry because had I not been so ‘rare’, something might be different. Perhaps someone might have listened to me, instead of blaming my symptoms on anxiety. This was the worst day of my life.
If someone had just listened to me while I complained of symptoms for years, I would not be sitting here listening to how I had 18 tumors that metastasized all over my organs, and were now killing me at an aggressive rate.
I left the office that day SO angry, but that anger turned into determination. The fiercest determination I could have ever felt, I was not going to die because I wasn’t heard.
I would be heard.
For the last five years, I’ve been heard. I may have suffered along the way, I may have had to do every form of treatment possible, but I’ve been heard.
Not accepting my fate was one of the best decisions I could have made, even after countless disappointments and setbacks, despite being told again and again mountains of bad news, I didn’t give up.
We didn’t give up.
I have news …
Today I sat in a white office, waiting to see my oncologist to hear an update of my cancer progression. For the first time in the last five years, I held onto the hope I felt countless times, and waited for news.
It’s always bad news …
Not this time.
Today, for the first time since my diagnosis, I was told I was stable.
There’s no cure for the cancer I have, not at this stage. I was given palliative care, and supposed to await death. I was sent away to die at 24 years old.
I didn’t accept that, I fought. Hard.
Now I’m stable!!! DO YOU KNOW WHAT THIS MEANS?
Stable means that for now I don’t have to continue treatment, I can take a break. Stable means I don’t have to go do any more scans for 6 whole months, 6 months! Stable means I can be in less pain, it means less attacks.
It means hope...
I’m writing this with tears in my eyes, because when I started this journey I just wanted to make a difference in as many peoples lives possible. To prevent suffering like mine. Today I feel that I can finally GIVE hope, the hope I’ve been clinging to so hard for the last few years.
Many of you have followed my journey from the beginning, clinging onto that hope just as hard. I’m finally able to tell you that I have good news, and it feels incredible.
If you’re reading this and you’re going through treatment, if you’re in pain, if you’re suffering, if you’ve just received your diagnosis, wherever you are in your journey… just know that I’ve been there.
Now I’m here.
It’s an amazing thing.
My life will never be normal, and I’m certainly not cured, but this is the first time I can say that I’m able to breathe a little. I don’t have to plan my life around what treatment is next, wondering if it will work, or what side effects it will have. I can just live. For now, I can breathe again.
If you’d like to see more of my journey, and learn about what treatments I’ve done… take a look around my blog. My most recent treatment plan was PRRT, although scary, it definitely made a difference in my condition.
Not giving up saved my life, being heard by the best of doctors for this condition… changed everything.
Never, ever, give up.
Hope is the hardest thing to have, but it’s worth it.
Pheo VS Fabulous 🚨 Coming to you live from the comforts of her 15×25 hospital suite 🏥
It’s incredible when the mental fog begins to clear just a touch and you’re 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 😐 ?!
Warning: things may get a bit sassy while my brain function is working, I’m not letting this opportunity waste ⚠️
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 “Fabulous”
….Then, what good is it if there’s 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 didn’t know how or where to even begin.
Yes, that’s right, updating a status, sending a text message, menial tasks sent me into a 🆕 full “crisis” mode. Eventually leaving it impossible to do just about anything. Depressing much?
You’re 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 🥵 , 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 I’ve 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 isn’t me.
I would never distance myself like this by choice.
So, if you DO know someone who’s sick, do everything you can to adapt to them, with them, and for them. Even if it seems they don’t want to, or can’t, they do. They maybe can’t 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 it’s 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 don’t belong, but it can’t 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.
That’s 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.
I’ve 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? Don’t 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 I’ve 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 ➡️ …..
…. We are now safe in the Montreal hospital, where they are amazing, and actually treat their patients 🧩
Thanks to MY own personal doctor cupcakes. My Superman. Who I think hasn’t slept in the last year in order to keep me alive and also smiling every day despite the screaming in between.
If you’re going through something similar, whether you’re 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 I’ve been able to reach out into so many people’s hearts and lives:
Through my pain I’ve been able to see humanity like you wouldn’t believe. Through all of the trial and tortures I’ve been able to treasure other people’s proper diagnosis and the removal of suffering.
Through the tears I’ve laughed harder than I’ve 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.
How do you tell the ones you love… something you can’t begin to explain yourself”
I moved into my dream home 22 days ago
Twenty two days of contemplation and careful thought of how I was going to share this, or whether or not I would. I’ve always said I would share the good, the bad, and the fab.
I thought I would have so much to celebrate with my move, my clinical trial finishing… so many triumphs.
…But Cancer doesn’t work that way.
I couldn’t write this.
I want you to see what we live through in between treatments, not just during, I want you to see the hope, the pain… the before, middle, the after.
This is why Pheo VS Fabulous exists.
Please watch the full video 🎥
Pheo VS Fabulous has reached so many people around the world, my dream is it will continue to do so. 🌎 Please keep sharing, keep following, each time you do it’s one more person who is diagnosed sooner, or who finds hope 💫
I never want anyone to have to feel what I feel – Pheo vs Fabulous