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
Iām sure youāve heard this phrase, probably hundreds of times. Although it is great advice – what does it actually mean?!
Thereās a lot of different ways this phrase is interpreted, most of us associate it with rest. When your body is sending you cues to slow down or some time for self care. Thatās all true, but what about all the other important aspects of it?
Thereās a lot more to it than youād think. Most of us with chronic disease are in tune with whatās normal and whatās alarming.
āYour body will let you knowā
Most people when recalling a diagnosis story, theyāll tell you that golden advice. They will say āyour body will let you know, you just have to listen to itā so what does that really mean? What are we listening to or looking for? Do we run to the doctor each time we have a funny pain?
Well that depends, first, you need to get to know your body.
āno one knows your body better than youā
Not all of us are in tune with our bodies, especially if youāve never had a major health condition. We can brush off a lot of symptoms because weāre unsure of their importance. So Iām going to give you some tips and explain a bit more of what to be looking for
In order to get to know your body, you have to start listening to it. If you have a normal every day pain level of 2, take note of that. If youāre someone who has no pain at all, take note of that too. If youāre a woman, take note of what your breasts feel like, on and off your period. Get to know your smells, if you normally donāt have a perspiration smell or do. Do you often get headaches or is it unusual for you? Do your eyes twitch when youāre tired, or all the time? Is your skin very dry? Always or just sometimes? Howās your mental state? Are you a very anxious person or very calm? Always tired or full of energy?
These are just random examples, but you get the idea. We have to get a baseline idea of what our bodies normally do in order to know when itās giving us cues. Or in some cases, alarm bells.
Itās pretty normal for most people to have the odd symptom here and there, itās typically nothing to be alarmed about.
When I start to become more alert is when I experience a new symptom that Iāve never had before or havenāt had for a very long time. I take note, and I follow it to see if itās getting worse or becoming consistent.
I break down the urgency by persistent or consistent. If youāre experiencing the same symptom over and over again, thatās when your body is really trying to tell you something.
If Iām experiencing a symptom thatās worsening, thatās when Iām making a trip to the doctor.
Why is it important to listen to your body?
If not you, then who will?
Going back to when people are diagnosed, later when they recount their story, they remember certain cues or things that were off. They recall things their body was doing that perhaps didnāt seem like such a big deal at the time. I canāt tell you when something is urgent, because everyone is different. I can tell you to listen and try to judge with the best of your knowledge.
I can also tell you that if something impairs your daily life or capabilities, itās not to be ignored.
Iāll give you some examples of things I personally take note of and how I deal with them.
Symptoms
If my headaches become more frequent, I start to take note. Itās not for nothing, but it can be due to lack of sleep, or stress. If they become more frequent and severe, thatās when Iāll bring it up at my appointment.
Energy levels and fatigue: if Iām sleeping well, and doing all the right things – yet Iām still exhaustedā¦ Iāll take note of it.
Perspiration: if it changes or has a different smell, I take note of it. Hormones can change the way your body smells, so itās good to know the differences.
Abdominal pain: There can be so many different types of pain, I for one experience pain on a daily basis for numerous reasons. So I take note of the level, the location, and the frequency. Is it linked to an activity? A food? Is it the same pain? How would I label it?
Skin changes: I used to think this wasnāt a big deal. āMy skin is just dry because of winterā, or āI just have dry skinā. That may sometimes be the case, yes, but Iāve also had major skin changes to alert me of my thyroid changing, and my cortisol levels depleting. Many issues in our body lead to a hormone imbalance, so itās important to be aware of the trends.
Hair loss: itās normal to lose a few strands of hair in your brush, and in the shower. However when youāre losing clumps, getting bald spots, and it just falls out without brushing or washing, itās a cause for concern.
Brain fog: some of us can get a bit foggy when weāre overwhelmed or not sleeping enough. However, brain fog is also a major symptom of many illnesses. It can also be caused by medications. For me personally, I take note and try to link it to a specific cause so I can deal with it IF possible.
Bloating: this can be a major issue for some of us, it can be something that needs to modified in your diet. Thatās the first thing I try to take note of by trying to link it to a food intolerance. Next I will make note of the severity, does it happen after eating? Does it happen out of no where? Is it painful? Does anything help it?
Mood changes: first thing I ask myself is if it falls under my normal reaction or trends. I label the feeling, try to link it to something, and if not I ask myself if itās related to lack of self care. If itās really an irrational random reaction, I take note because itās typically linked to something more important.
I could probably go on for a while with the types of symptoms I feel, but you get the picture. First take note of what it is, then try to keep an eye on the trends. Frequency, severity, and description. If youāre someone with a lot of different symptoms, itās best to take note of the ones that stick around or are particularly painful.
Once you have your baseline of whatās ānormalā to you, you can then start listening for the alarm bells and cues.
Remember, often it IS a gentle reminder to take it easy, slow down, get some rest. However the only way to know is to be in tune with your body, thatās when you can begin to really listen to what itās trying to tell you.
When I make note of all of these things, I generally try to make changes in my control to see if anything helps. If nothing changes or it becomes worse, I will talk to my doctor, get some labs done, and see what kind of plan we can come up with based on the results.
You can read how to best prepare for a doctorās appointment here.
Sending love, unicorn magic, and a whole lot of fabulous your way š¤āØ
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!
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
Iām no stranger to treatments and procedures, thatās the understatement of the century! However, getting something done because I WANT IT done, thatās a new concept as of late.
When youāre sick, your body becomes sort of …everyoneās. It doesnāt feel like your own anymore, a product of the medical field.
Well Iām taking my body back, and Iām loving it.
Pheo VS Fabulous was built around the statement of staying fabulous throughout it all, never losing my joy. Well I think Iāve taken that in stride, but it gets difficult. Itās about time I can take back some of my fab. So Iām doing that in every way possible. Physically and mentally.
Have you ever heard the expression, āI woke up like thisā?
When you have an illness, it takes a toll on you. It takes a huge mental toll, and that turns into a physical toll. We often just stop doing things for ourselves because everything is so damn hard. We do things out of convenience a lot, and stop doing things because theyāre enjoyable and we WANT to.
This may sound crazy, but any time I go into see the doctor, or am surprised by the fact that I have to go in an ambulance, I always think first … āhow do I look?ā I HATE looking sick. I feel like the moment my illness takes over my physical appearance, itās won. Iāve lost that one part I can control.
When I was SUPER sick, (bedridden) I did EVERYTHING possible to stay me. My hospital table was a makeup table, my slippers were cute, my pjs were always matching, I got my husband to do my hair. It was just important that I didnāt lose myself completely.
Now that Iām feeling better… I wanted to treat myself to a few things that could make this job a little easier in those times. When Iām too sick to do anything at all, but I still wanna wake up looking absolutely fabulous!
Operation lashes and brows commence!
I know I know, Iāll be the first one to admit… Iām a bit extra! š Iām okay with that. Not everyone is going to feel the same way as me about these things, but I guarantee you youād enjoy them just as much!
I would spend so much time filling in my brows with makeup, pomades, powders, gels, anything to make my brows look and feel great. Even if I didnāt do anything else to my face, I always did my brows. It was just a thing I had to do. It takes time though, and a lot of different products to achieve that perfect look. What we millennials would call the āInstagramā brow. Ha!
Once youāre done with the consultation, filling out the necessary medical forms, and having the actual procedure done.
I found it fairly painless, but again… this goes back to having done my research and making sure I went to a QUALITY place! I scoured their pictures on social media, read their website up and down, and looked for reviews to make sure I was getting the best of the best.
You lay down on a comfy bed, your lash/brow technician preps the area with numbing cream, (be sure to check what they use and be conscious of any allergies)! and then they start mapping out your new brows! My eyebrows were extremely sparse and uneven, so there was a lot of work to be done. When she first showed me what they were GOING to look like, I wanted to cry. I was so happy! So we went to work, and 2 hours later…. perfect brows šš¼
Just a side note, Katie was extremely gentle, professional, we talked so much glam, and I had the best time ever. It helps to be comfortable with the person youāre doing it with, so keep that in mind when youāre booking with a salon!
This is the first time I had to lay down for hours on end and actually have a fun result at the end instead of just a scan that showed my tumors, so I was pretty ecstatic!
Here is the first result:
So this was my first session, you can see I am red because of the procedure but they healed perfect and I love them so much! (I’m also extremely sensitive so this is normal) Your eyebrows will initially go a bit darker with oxidization, but that goes away after one week and they heal to the color your specialist custom makes for you. You have to go in once more after this a few weeks later for a touch up, it allows you to make any changes or go a bit more dramatic if you feel the need!
Mine is coming up soon, but I love my brows even as they are now. Iāll do a bit of work touching them up to darken them a bit, but other than that .. love!
Lashes…
Now, Iām a person that actually enjoys wearing false lashes in my spare time. Haha! But itās so much work and money. Doing false lashes when you can barely sit to do your makeup in the first place… itās a bit much.
So when I heard I could have lashes that were voluminous and beautiful ALL the time, I had to have this. Never glueing on a falsie again? Sold.
Iām sure youāve heard of this, thereās all different sorts of eyelash extensions you can get. āNatural, hybrid, volume, super volumeā
Well I wanted EXTRA volume. Go big or go home!
I went back to my technician and told her I wanted to be ultra glam, all the time. Hit me up with the biggest lashes youāve got!
This is the first time Iāve been able to feel well enough to partake in these adventures, so I might as well go all out! āŗļø
(And looking like Iāve done a face of makeup without actually lifting a finger… yeah, tempting!!!)
So I took the plunge.
Appointment time: 2 hours
Each lash is masterfully added to your own ONE BY ONE, by hand. Itās actually pretty crazy when you think about it. Iāve never seen such patience and precision. Of course, there are differences everywhere you go, but this was my experience.
I was pretty tired by the end of it, but it was worth it. Katie was also excellent at allowing me to have a break if I needed it, and overall I just felt super comfortable.
This is the end result! Again, my eyes are a bit red because of having them closed for so long so you tear up a bit, but I assure you theyāre fab fab fab! Perfection.
I will link the website of where I got mine done, www.dollylashlounge.com so you can read yourself through the procedures and services list. I thought it would be more fun to hear it from me š
I told you guys Iād bring you along on my journey, and this is part of it.
Right now Iām all about taking back my fab. Thank you dolly lash for helping me do that.
And thank YOU GUYS for following along with all my crazy but fun ideas! I hope Iāve inspired you to do something fun and kind for yourself, because letās face it… we all need a bit of love now and again. Why not let it be from you? #selflove
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.
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.
We think they own them, we signed them over the moment we agreed to save our selves from the disease that’s killing us every day, see how that works?
Cancer: you get to kill me.
Doctors: you get to save me by any means necessary
Me: I TECHNICALLY have a say… but…
Believe me, there is ALWAYS a but
If you start saying no to things, how can they save you by any means necessary?
Anyone can go on from the outside and say there’s always a choice etc etc, and yes there absolutely is. We always have choices, mine often look something like this:
your veins aren’t working for the 189th time in your life, let’s rush you off to a secret room after after having poked you 7 times – and we will surprise you with a procedure you swore you would NEVER.EVER.EVER do Again – (text here) Ā IĀ wrote about in previous times to GREAT lengths because it caused you such trauma the last therapy during MIBGĀ (and out of all the things you’ve had done.. that’s saying a lot), just the mention of it is traumatic.Ā
My words aren’t coming out, no one is listening to me. What good would it do anyways? It’s now my only alternative to receive the treatment I’m here for.Ā
Ever wonder why the term cancer sucks is so popular? Why so many people want to say fuck cancer? ….
this is why.Ā
It’s because of situations like this, when you are no longer a person, when you no longer have a say in your own body in order to save yourself..because you know that you’re damned if you do and you’re damned if you don’t.Ā
Part 1: 05/23/2017 – PRRT treatment prep
jugular insertionĀ
But I’m tired now
I’ll leave you with something good, as I always do… I was greeted with my Doctor cupcakes (my husband), after some kisses š, and pain control, I was ready to start my treatment in a little less agony.
(My clinical trial doctor) is amazing, and does everything to administer the treatment in a comfortable fashion.
The treatment itself was a bit improved VS the last few times.
More on that later once I’m not so traumatized from the morning, and tired & in pain.
There are two things this disease has made me become an expert with:
learning how to be okay with never leaving your little comfy space (or rather being confined to it).Ā
or
constantly leaving that comfort zone you’ve been confined to for the purpose of being EVERYTHING but comfortable.Ā
Luckily I’ve acquired the most important lesson of my own, & that was to stay fabulous no matter what. Have YOU guys figured out the meaning of ‘Staying Fabulous’ yet?
This past year my health has declined significantly despite doing the most treatments packed into one time frame ever.Ā
With that said, my wardrobe mostly consists of comfy pyjamas, my hair is done by my husband (bless his heart). Speaking of hair, let’s be real… I can’t even wash my own hair, there I go again painting a whole different picture for you guys. I have care almost every day, and a lot of things I’m unable to do. Fabulous means SO many different things, but I still haven’t lost my fabulous, even if I’ve lost my ability to do all of these things by myself.
When I choose to do my makeup it takes me sometimes close to 5 hours or more, but I don’t mind because it’s every couple of months or so – and it makes me SO happy! Despite what I share in photos, we create a picture to make others happy as well.
What matters is the love, the laughter, the same outlook I’ve promised to have from the beginning hasn’t changed.
My message is being delivered with the same sparkle (most days) Ā āŗļøāØ because that’s what PHEO VS FABULOUS is all about.
Regardless of everything that we have been going through to make it here, we’re here, and we feel just as grateful as ever.
When we were challenged, we leaned on each other for the support we so badly needed.
We felt so blessed for the support we constantly receive.
It isn’t in me to give up, the only thing to do now is move forward. To unfortunately just keep receiving another treatment and see what’s next.
What IS next you ask?Ā
Remember option 1 or 2? Well, today is # 2. Actually this week is a bit of both… except today is …
leaving the spot I’m most comfortable in. (You know, normally I’m confined to my house)
AND, this week is being confined to a space … but unfortunately not the space I’m most comfortable in, quite the opposite actually – I wouldn’t call the hospital or a radiation room my comfort zone. š„ā ļø
BUT that’s the life of being terminally ill š· treatments, clinical trials, being radioactive, a girls gotta do what a girls gotta do! āš¼š„šøš»
After all that jazz I will be laying in the big spaceship scans later in the week… pretending I’m getting a facial in my Dream bungalow house in the trees that has NO stairs, one of those swim spa pools where my poor body can float all year round, and a little all year round sunroom for my puppies & me to relax when I’m feeling down Ā š” sounds wonderful right? My mind is escaping there already.Ā
Dreaming, dreaming, dreaming āØāØāØ
Ok, time to glow friends šš½š
Tuesday is the actual day for treatment, PS š„ā¢ļø In case you guys forgot what treatment it is, it’s the PRRTĀ clinical trial Ā – this will be my fourth round.
(Which also happens to be serge and my 7 year anniversary š, which also happens to somehow ALWAYS be spent in the hospital šŖš)
After having said all I have to say in my last Post, gotten that off my chest… everything I’ve been feeling over the past few days…
we are here. At the hospital that will give me my third round of my clinical trial – PRRTĀ
We travelled yesterday several hours into the night to eventually arrive to the hospital that will eventually administer the experimental liquids that maybe or maybe will not help me diminish some of this pain I’ve been feeling. Maybe it will do nothing. Perhaps it will make me worse. I don’t know.
What I do know is that I was absolutely terrified the last few days, thinking about just driving here and adding to my state of pain, and then actually having to endure treatment?! HA!
of course then having to even consider the next few months…. ugh, my worsening body, and the NEXT round. I just can’t.
I’m not one to cry but it hurts so much lately, kidney stones, complications, the attacks, everything seems to compile at once and just want to break you down.
ššš„š·š
Well I am broken, but I’m still going to take whatever pieces of me are left and fight this awful cancer and get this TreatmentĀ done, that’s why they call it ROUND 3 – they’re throwing me in the ring with some help…Ā well i always win. I always win. I always win.Ā
šš¼šš¼
To my person,
my eyes reflect the longing for the moments we should have had together and will never see, but love for the time spent together everyday, yet I feel such pain when you cherish the simplicity in our mundane routine, and even more pain when I know that you feel everything I feel.
I love you more than words can ever share, and I wish to go with you as many places as we were ever intended to go, with me in a state where I can enjoy it – this can’t be it. This pain cannot be it.
But if it is… my gift to you is that you were the only one who truly saw what this disease did to me throughout this whole time. The relentless pain of this 24/7 psychological and physical warfare, you’re my number one first. Before anything else, you’re the one who I fight for and dig deep to find my last smile for each time, because you’re the one who’s always there making me laugh.
So if it ends up that this it, things don’t go our way and I’m still in so much pain – just know that I will dig deep and find my smile for you baby.
like you say… we’re going through something so beautiful, when do you ever get to experience this?
šāØšš¼
To my beautiful wife,
We have done allot…
But I had so much more I would of loved to do. Just spending time with you is allready a gift. And one day we will do lots. So let’s go get you in to shape. Quebec here we come. I am bringing you my most precious diamond it’s a bit of a diamond in the rough health wise so please polish it up verry well so I can take her all around the world and show how priceless she is.
ššš
but you already knew that – I just had to grab your attention
The number one complaint you will hear from patients who suffered from being misdiagnosedĀ or being undiagnosed is that nobody listened to them
Why?
Because they were “too rare”Ā
These are the people who then had to hear these words, the diagnosis that shattered their entire world… Just much too late for it to count …
“There’s no cure, we can only manage the symptoms and pain ”
“With the limited information we have.. People live for about 1-5 years”Ā
“it’s 1 in 5 million once it spreads, I’ve never seen it personally, you’re very rare!”Ā
It’s Rare Disease Day
I thought that I would offer a different perspective – one that could explain what this day means better than anyone, and why it’s so important to share this message.
Today is rare diseaseĀ day, they call them zebras.Ā
Zebras are the last diseasesĀ that doctors look for. The obvious ones are called Horses, those are the ones the Doctors are used too. So they get to cure those on time.
I have a Zebra at home so it’s the one the doctors didn’t catch in time. She is my beautiful wife 26 years old she is what we call paleative.
My wish is that the doctors would of listened when she was telling them that her illness was back and did proper testing instead of blaming it on anxiety, it would of been treatable she would of had 1 thumor instead of 16 impossible to treat.
So please doctors I beg you to listen to your Zebras when they say they know their illness is back and don’t look at the ‘Horse’ if they are Zebras. Continue on treating them like Zebras.
If you have a Zebra in your family fight for them don’t let the doctors see them as Horses.
I’m very happy of how I’ve taken care of you since you were diagnosed butt I really regret the way I did not react before. If I would of known better it would of been different. I know it’s not just my fault but I still carry with me a lot of blame, I always think if I had known more back then I would have fought harder for you, if I just would have known there were more tests, I trusted in them and I shouldn’t have. I would have never taken no for an answer, we just didn’t know what more to do. We didn’t know what to research for, we didn’t know we had to. And I’m so Sorry babyšŖ
Now we are doing everything we didn’t know how to do back then, and it’s helping others. I’m so proud of you. You will help so many other people not feel the way we did that day. I love you so much!!
Thank you for reading!!!
This is what it’s all about, to hopefully help rare diseases like mine (pheochromocytoma) cancer become less of an unknown disease to all involved. Eventually making these misdiagnoses, and undiagnosed patients less of a problem.
Help us become less rare.
Help keep sharing the information.Ā
Every day I struggle through my pain to write any little detail so that there will finally be information available – any information available to others about this rare disease. Explain what it is to participate in treatments, procedures, and rare trials real time…I patiently repeat myself as I explain what pheochromocytoma is over and over again to anyone and everyone.
All I ask is that you share my message further, just SHARE!
I have one common goal in mind… help make this disease less painful for the next person. Make this disease less of a struggle for the next family, less of a mystery for the next patient, more information available to the next medical team, and hopefully…
Whatever they can do to give us with more time, and better quality of life.
I know there’s no cure, but it would beĀ really nice to not suffer so much while we’re waiting.
There’s one single day forĀ thousands of rare diseases to become less rare and get the awareness, funding, and exposure they are looking for – all crammed into one 24 hour period. Why is that?Ā
Are we less important than someone who has a different disease? Am I dying any differently?Ā
This is why I need your help, today and everyday… but ESPECIALLY today, let’s make today count for all of us zebras.
Let’s make our February 28th 2017 Rare Disease Day worth it!
Trying to figure out how we will pack all of my comforts into a couple of bags, and how we will leave behind everything important to me in my life.
Secretly wondering in the back of my mind… Will I return?
Catching glimpses at one another, knowing we’re thinking the same thing. Instead, distracting ourselves by packing those couple of bags… hating that it’s ‘that’ time again.Ā
It’s been a really tough couple of months, since the first treatment.
Specifically the last couple of weeks have been especially hard. I don’t know why, and we have not been able to figure it out. Going into treatment in this condition? Not the most comforting feeling, I’ve never went into a treatment feeling physically inadequate, this will be a first. I’ve never went into a procedure with a mystery looming over me, wondering…
“What’s wrong with me?”
“Why do I feel like this?”
It’s different.Ā
We’re close to leaving now, I can hear Serge packing the last few things in the truck, the dogs nervous feet scampering around, so many hours ahead of us to go…
Treatment will be administered on Tuesday, and then all of the protocols will be followed the rest of the week, scans, scans, and more extremely long and painfully still scans. Putting us leaving around Saturday a week later.
This is what I know for now, I am still gathering information for my longer informative post about PRRT. I figured since I’m doing the second round maybe it’s best I wait. Also, I just haven’t felt well enough to write anything remotely informative šš¤ that requires brain power = brain shut down= eyes go bye bye.
Okay, time for me to get dressed, and that includes putting my smile on. It’s time for a ROAD TRIP!!! š
canĀ·cer
ĖkansÉr/ – disease; causing the body and mind to adapt, overcome, and embrace change.
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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.
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?
I used to just see it as 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.
Until you live them, you are intimate with each word, and you get to know what each one will mean to youā¦ 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.
This phrase, āquality of lifeā, itās meant to bring a sense of comfort, a level of respect,
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 importantlyā¦
just keep you who you are.
Thereās the first problem:expectations. If we donāt adjust our own expectations and EXPECT this disease to change us, this will be the first disappointment, the very first of many tears, and the beginning of the harsh reality which is called life with cancer.
We cannot simply continue to live our pre-cancer, pre-adrenal insufficiency, post surgery, post treatment, etc etc, the exact same way we did beforeā¦ right?
Well, I kinda did. I think we all do in some respects, and thatās normal.
The difficulty is realizing where you can no longer do so,
and where you need to adjust your expectations.
I didnāt say give up there, did I? …
Time toĀ ADAPT
So here comes the hard part, once you start to changeā¦ no one but you can prepare you for this.
The next time you hear āYouāre so strong!ā, donāt shy away from it when someone admires your strength. 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
I donāt even have a life anymore, so how am I supposed to have a āqualityā oneā¦?
Everything I am doing is supposed to ‘provide me with better quality of life’, but after procedure I’m left feeling worse and can do less…
How am I not supposed to lose hope?
FAST FORWARD a few monthsā¦Ā
My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly ‘normal’ to being completely bed ridden for months and needing a wheelchair the rest of the time. THAT was the most surprising, and still is…
OVERCOME
Did I tell you how wonderful it feels to simply be a little more kind to yourself?Ā
After all… how am I supposed to have any sort of life if I am not going to accept the fact that my life is different? 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.Ā
The fact that I have woken up each day with a smile, and gone to bed each night the same wayā¦
ADAPTINGĀ to each new circumstance, OVERCOMINGĀ each new situation.
Most importantly, understanding that even the smallest victories are worth celebrating, simple joys are to be found and appreciated everyday, because these āsmallā and āsimpleā things to someone elseā¦ probably mean the world to you.
Remember, although your life is differentā¦ itās YOUR life, and these are the things that make the quality of your living.
Embracing Change …
Throughout most of my story, I’ve chosen to share personal aspects of my life to help others come to the same realizations and places I am, but hopefully not have to suffer quite as much to get there.
Just in the last two months, having another treatment to control my disease has confined me to my upstairs floor, iāve suffered the worst pain so far this disease has given me. Itās made me question my quality of life, since being palliative, Iām supposed to be as comfortable as possible, and enjoy my quality of life. Instead Iāve been writhing in pain, stuck in a bed, unable to leave the upstairs floor of my house, lonely, defeated.
It made me questionā¦ āNow how will we get through this one?ā
And we did.
Becauseā¦
Cancer makes youā¦ ADAPT, OVERCOME.
Months ago, my perception of having home care and setting up a bedroom on my bottom floor?
My response would have been: ARE YOU NUTS? Iām not doing that! Why would I do that!?
Now!? I’m only 25 years old, I’m not putting a hospital bed in my living room, that will never go with my decor! (priorities, jeeze)…
I can now see out a window, I have LIFE fluttering around me, I can see my husband cooking in the kitchen,Ā I can see my dogs run around the house, I could go and choose a very pink blanket for my new bed (ha!) I can actually walk to the kitchen and serve myself a drink or snack when I’m feeling well,
I was able to have a christmas tree, I can drift off to sleep right in front of my fire-place,
watch the snow fall down…Ā
That smile? It was fading slightly for the first time when I was confined upstairs for all those days,Ā it was still thereā¦ but it just wasnāt quite as bright.
Thatās what quality of life is
Those arenāt just words, This is MYĀ life
And this smile? It’s brighter than ever now…
You too will be able to adapt to your new changing situation, overcome your new challenges, and embrace the changes as they come. You just have to remember… your new life is exactly that, a new life. You must explore the beauty it has to show, the joy it has to give, and the blessings it has to offer.
Just remember, 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 š
Pheo vs Fabulous 