Iāve been living with a body thatās stuck in fight or flight since my teens. Of course for the longest time I didnāt know how to control or manage it.
Then once I knew what I was dealing with, I was conditioned to believe that itās the nature of the disease. Basically take the medication and suck it up. In a way, this is true. Biochemically we will always be stuck in fight or flight, with the constant stream of adrenaline overflowing in our bloodstream.
But what about what we can control? Why doesnāt anyone tell us about that? Iāve accepted I canāt control all the elements of this disease, but letās talk about what we can impact. All the ways we can help to calm our systems down, slowly reconditioning our bodyās stress response. Which by the way helps with many different aspects of life, not just the grenades inside of us.
Learning more about the nervous system I believe has unknowingly kept me alive. Itās what has allowed me to combat the constant stream of stress with a balance of calm through my own daily practices. These practices I believe we should all be doing more of, with or without pheo para!
I know I will always need medication to manage the dangerous adrenaline levels that the tumors produce. Iām okay with that, but it doesnāt take your body out of fight or flight. It doesnāt calm the systemās stress response, because as humans we all experience stress. If you add in the residual impact of the adrenaline + Trauma + biochemical levels and you think – Iām doomed!
Luckily Iām a unicorn and we believe in endless hope, magic, and sparkly miracles.
You donāt have to have a crazy rare cancer to experience a fight or flight response. It can be triggered for so many reasons, the trick is being able to calm it down.
This isnāt something we learn at the doctor unfortunately, so take notes my friends!
Guided meditation. I wouldnāt make it through my most painful procedures. Fact: meditation/hypnosis used to be used as anaesthesia! Search on YouTube for free meditations specific to your mood and schedule. The mindful movement and Michael sealy are some of my personal favourites.
Deep breathing: too obvious? Most of us donāt mindfully breathe from the belly. Next time youāre feeling stressed, pause, take 3 deep breaths by inhaling through the nose expanding the belly and then exhaling by the mouth.
Noise + Light: if youāre feeling reactive or triggered, dim the lights, ask those around you to speak quietly or leave the room and go to a safe place. This is especially important in hospitals since health care workers are trained to speak loudly, and the lights are very harsh.
CBD: always check with your doctor first. Iāve had amazing success as of recent with CBD oils. I have tried both THC therapy and pure CBD, the THC aggravates my tumours + symptoms. CBD on its own alleviates and calms my system during the day and helps me sleep at night. Do your research for quality & safety! Sleep has been my biggest struggle over the years with all the residual adrenaline. However itās so essential for our healing, if you can find something that works for you itās such a blessing.
Zero gravity position: raising your legs above your heart. NASA puts astronauts in zero G before take-off to equalize their weight and ease the stress on their bodies as they are launched into space. Cool right?! They have special wedge pillows that offer this ability. Or you can prop your legs up against a wall, or build a pillow fort. Whatever works for you
Gentle movement, walking, light stretching, anything youāre able to do. I really love Thai chi videos to move along to and you can bring your phone or laptop anywhere outside to enjoy it in nature. I just discovered physio that is yoga centred and that made me very curious. Itās to help the body with movement while healing certain injuries. Iāll keep you posted if we try!
Red light therapy: only 10 mins to see incredible benefit for mood and anxiety. I recently invested in a home setup because I needed the access safely and consistently for what Iām looking for. Laying in the warm red light is calming in itself, but itās proven to have benefit for depression, anxiety, stress, and a whole lot of other things! Thereās plenty of clinics, spas, and salons that have red light therapy. There is also a wide range of options + sizes for home. This is the company I used.
Vagus nerve toning: a new device Iāve been trying/enjoying is called āsensateā. A necklace that uses is infrasonic technology to stimulate the vagus nerve. It vibrates against the sternum paired with calming sounds on an app through your phone. You choose how long you want your session to be and select the music and just enjoy. Itās scientifically proven to ātoneā the vagus nerve with continued use. I love when I find things like this and they actually work. Again, just the 5 mins of calm is beneficial BUT with built in deeper benefits. Absolutely phenomenal šš¼ @mysensate
Nutrition plays a role in everything. Iāve talked about this before and if you have pheo or para you probably follow a low tyramine diet. If youāre wondering what that is – the MAIN no noās would be fermented/pickled foods, processed foods, and soy. Having MCAS I canāt eat foods high in histamine either or else my system goes haywire. Being mindful + learning what triggers your bodyās stress/anxiety helps a lot!
H20, If you are dehydrated, your body is not functioning properly, and therefore may cause increased levels of stress. Ever notice your heart rate increases or feels like itās skipping beats when you donāt have enough water? There are many many tricks to stay hydrated, this isnāt something to skip on.
Vagus nerve toning + vitamin DGentle movement at home Red light therapy home setup CBD in various formsLow histamine foods Meditation + breath work Zero gravity position
Some added extras: different forms of healing therapy OR trauma coaching can be helpful with PTSD. Not everyone responds to talk therapy so this is an alternative approach. Post traumatic stress causes the body to be locked in fight or flight as well, so seeking the appropriate care for you can be helpful. I just began trauma coaching, using internal family systems or āparts workā as the main healing modality. Iāll update more on that later when Iāve had more time to work on this.
Supplements: I wonāt recommend anything specific but checking your full blood panel is so important. When you have a low nutrient level or something is off, it can cause you to feel run down which then makes your body stressed. Talk to your doctor about a FULL blood panel.
Self care practices you enjoy, Epsom salt baths, journaling, reading, etc. For me Iām writing this blog as we speak as a way to calm my own stress response.
These are my main healing practices at this moment, I use a combination of these to help normalize my baseline stress levels. I hope this helps you too. For my āattack survival guideā and more resources click my drop down menu on the home page.
Remember, through channeling our energy into the things we can control – we live an empowered life. We live with intention, and remove the lens of fear.
You can follow along with my social channels @pheovsfabulous
I love hearing from you, leave a comment + share this with your community if you found this helpful š¤š¦
You may be surprised to hear me say this, but sometimes itās not āself careā that we requireā¦
We just need CARE, period.
Let that sit for a second, how does it make you feel?
For me: it instantly took a weight off, I immediately had this pressure lift from my shoulders and chest. I allowed myself space to deserve something I didnāt feel worthy of, until now.
I hope as youāre reading this, you will find that same empowerment that you deserve.
I often talk about being in a state of overwhelm, and how to get out of it. We are led to believe we have no control over our bodies with this disease. In some ways thatās true, but sometimes the answer isnāt more doing. We are already SO reactive, we donāt always need to do more. We need to do less.
Let me explain
When youāve been THROUGH IT, or are still in the thick of it, sometimes just barely keeping your head above waterā¦ the word āself careā feels heavy. Itās one more thing we need to worry about when we have the weight of the world on our shoulders.
When you have been dismissed so many times, when you have to fight for every single answer you get, feeling like weāre doing all the work but still not getting anywhere. Itās exhausting. The last thing you want to hear is to do MORE work because youāre not caring for yourself properly.
Iām guilty of it, I say it all the time. Thereās a time and place for self care but itās not the only form of care needed. Which is why I want to reframe the conversation about what care looks like. Period.
Weāre expected to do a lot as humans, as women, as chronically ill, as cancer thrivers, survivors, when weāre at our limits of overwhelm the answer cannot always be self care.
We get misdiagnosed, or are navigating a diagnosis, we are called ācomplexā, we sometimes feel unworthy of care at all. Like itās too much to even consider asking for help because we wonāt be believed anyway. This all weighs heavily on our hearts, and this is why self care isnāt always the answer. We donāt need more work to do, we have already become fiercely independent and keep ourselves alive – we just need some kindness. The type of care weāve been looking for and not always receiving. Thatās the only self care I want to discuss.
The actual definition of care is: āthe provision of what is necessary for the health, welfare, maintenance, and protection of someone or somethingā
Care (no self implied) is just being kind, removing resistance, and allowing yourself to just listen to what your body is telling you. Care to me is learning to listen to my bodyās needs without jumping to āfix itā or adding any other form of duty.
Examples of care can be speaking kindly to yourself, having patient thoughts, listening inward. When your mind is racing, just noticing your thoughts instead of stop fighting them. Sitting with how youāre feeling but not jumping to a conclusion or solution right away.
Care can be shutting down the internal argument that comes from needing rest or not wanting to add āanother thingā to your plate. You can care for yourself by just letting it be. Iām sure you know what Iām talking about – that story you create in your mind about needing rest or doing all the things you āneedā to do. You could have let yourself rest with all the time you spent arguing with no one but you.
If youāre reading this, does it feel good to just know that we can just BE? We can just feel or grieve or NOT feel at allā¦
We also have the option to not process anything, we can simply sit with whatever it is.
For me, knowing thatās an option made me feel less overwhelmed already
Giving yourself another āto doā isnāt always helpful, listen to what YOUR needs are at this moment.
What is your heart saying?
Presence is powerful. Not planning on how to āfixā what youāre feeling, just allowing it to be
Self care: the practice of taking action to preserve or improve one’s own health.
Just knowing that NOT taking action is sometimes an option, made me feel more at ease. It also made it easier for me take action when needed. It cleared the path of resistance in order to tend to my needs in a different way.
When we give ourselves care with no strings attached, we are essentially just allowing ourselves to feel kindness. Giving ourselves grace, patience, and the attentiveness we would give a loved one.
No action necessary.
Follow along with my daily journey @pheovsfabulous
Congratulations! You’ve are having the ‘gold standard’ imaging with relation to pheochromocytomas and paragangliomas. The Gallium 68, I have had many of these scans, all the way from clinical trial phase to PRRT treatment.
I figured it’s time to lay it all out so that you know exactly what to expect. I will be focusing on a practical overview of your day. I don’t know about you but – I find it helpful and comforting to be prepared. As we all know, the best way to live with cancer is to focus on what we can control.
So first, what is a gallium 68 scan and why would one have this type of imaging in comparison to let’s say… a standard CT or MRI?
There are many different types of imaging, the reason for ordering one vs the other is typically based on WHY it’s being ordered. Is it diagnostic? Prognostic? Someone who’s seeking an initial diagnosis and someone who’s living with the disease and having follow up will have different requirements.
I’ll keep this as simple as possible and focus on the Gallium 68, it’s just in order to advocate for yourself – it’s good to know the basics behind this. Structural imaging like CT and MRI are used to view the structure of the tumors, whereas functional imaging (like PET and MIBG) are used to see metabolic activity.
I know I said I’d keep it simple, we’re getting there I promise – gallium is considered the gold standard BECAUSE it combines both structural and functional imaging! How? Well, they use a PET/CT scanning machine to combine both modalities. See, they inject you with a radioactive tracer which makes them able to measure the output of hormones that the pheo/paras are producing. Then at the end of the nuclear imaging, they do a traditional CT to see the structure as well. It’s the best of both worlds, IF you’re receptive.
Not all pheo/paras are Gallium receptive, that’s why there are different types of radioactive tracers. Some pheo/paras can be gallium receptive but MIBG negative, and vice versa. Then there are the lucky bunch like me, where the tumors light up on ALL the scans. Which offers more option for treatment. Still with me?
When in the diagnostic period before surgery, it’s important to do a combination of imaging to know which radioactive tracers you are receptive to and for them to gather as much data as they can. This can later be used for followup and for someone like me with recurrence, it can be used as treatment options.
Gallium 68: what to expect
You may be experiencing some scanxiety, or maybe just type A and wondering how to prepare. Is it more than 1 day? Do you have to go back more than once? Do you have to fast? You will be pleased to hear that out of all the nuclear medicine scans – this is one of the simplest.
There’s no special eating or drinking requirements (yay!) and you do not have to go more than 1 day. Everything is all done at once, unlike the MIBG which is multiple days. From start to finish, it’s approx 3 hours. The actual imaging portion is probably about 30-45mins depending on your tumor burden and if they need repeat imaging. The short answer is no, there’s no prep for this scan. But it’s not the same for everyone, so I’m going to give you the real deal. Letās walk through the day:
Is there side effects?
This isn’t talked about a lot, because it’s said there are no side effects or reactions when it comes to the radioactive tracer. However, there are many patients who are sensitive to any type of chemicals without it being considered an allergy. You may not go into anaphylaxis like an iodine allergy, but if you have MCAS/MCAD, your body can have a reaction. It’s also possible you can have a mast cell response but not be diagnosed, like me for the last several years. Keep reading, I’ll show you how to be as prepared as you can.
Expect the Unexpected:
If you’re someone who typically has reactions to meds or procedures, this would be a good time to discuss with your doctors taking some benadryl in advance and afterward. If you’re on steroids to manage your AI, it may be a good time to do a small updose to prep for the stress your body may endure. If you have mast cell disease, you definitely want to prep as you would for any procedure. Do as you normally would, follow your protocols.
Practical advice for meds would be to have a portable medication case with some anti nausea meds, ativan, heartburn med, an anti-inflammatory, and any medications you may have to up-dose with *I had to take an anti nausea, heartburn, and anti-inflammatory afterward*
I linked above how to prep for an MIBG scan if you have a known iodine allergy, I think it’s important to know how to prepare for ANY procedure or imaging with rare disease. Which is why I created my own ‘medical resume‘ and linked the emergency protocols for mast cells, adrenal insufficiency, and showed how to create your own. You can find it here. Feel free to share it because it can truly be life saving in certain situations – think of it as your voice when you don’t have one
How to use a medical resume:
ALWAYS show your medical resume to anyone who’s in charge of your care. It doesn’t matter if you think “oh I won’t need it, I’m just here for a simple test”. From experience, it’s normally the simplest of tests or medications that have precipitated my worst reactions and emergencies.
I bring it up calmly and mention that it’s never happened to where I’ve needed major intervention. I then explain the importance of understanding the possibility of a crisis event. I highlight where I cannot be given epinephrine because of my pheos, and I show the necessary protocols.
examples of where I’ve used my medical resume recently:
Getting vaccinated, I show it to whoever is administering the medicine
Emergency: triage nurse, ER nurse, radiology, etc
All forms of imaging where I’m receiving an injection
Let’s walk through the day:
My appt was at 12:30pm, we arrived at the nuclear imaging dept and checked in. They will ask you to change into the lovely blue gown right away and await your name to be called.
Someone from the nuclear imaging dept will come to get you, where they will bring you into a room to do your weight, height, and insert your IV. It’s at this point they will do a questionnaire about your allergies, medications you take, previous surgeries and treatments, it’s pretty detailed right down to your mensuration cycle. This is the perfect opportunity to show off your medical resume! Since it has a detailed view of all their questions they will ask. Then you can casually segway into the protocols. Easy!
It’s time to go into the radioactive haven, this is a room with comfy reclining chairs where you will get your injection. They keep the radioactive materials here, this is where you will spend most of your time. They will wrap you like a burrito with freshly warmed blankies, it’s really quite wonderful. I bring ‘gallium’ my little scan mascot. As well as my ‘hospital bag’ which is filled with goodies I’d need like my kindle, hand cream, headphones, phone charger, gum, water, etc.
Once you’re settled and the radioactive tracer has arrived, (yes, it gets shipped in specifically for YOU) they prepare the injection, flush your IV, and now administer your medicine. I’m not saying this will happen to everyone with pheo/para, but… my tumors react IMMEDIATELY as the product is injected
I get a tight, hot, squeezing pain in the middle of my chest around my sternum. The reason I mention this is because the first times it happened, I thought I was dying and it made me incredibly anxious. Now that I know it will happen, I am prepared to deep breathe through it and always have a guided meditation ready to help calm my body.
It passes pretty quickly, I’d say within 3-4 minutes. They will bring you the barium liquid to drink with some water at this point. You will have to do this more than once. Barium is a contrast agent that will help them visualize the gastrointestinal tract. It’s yucky and can taste like orange or poison berries. I was pleasantly surprised to see that my hospital updated their formula! Not only did it taste good, but I only had to drink 2 small shooters of it. Hopefully this is the case for you!
Once the barium prep is done, you will be told to empty your bladder at this point and go get scanned! This is a funny detail but it surprised me the first time too. The bathroom in the radioactive unit has a big lead door, just like all the rooms. However they often have it disabled so you can’t shut the bathroom door. They have this portable rolling door that blocks anyone from seeing you, but it’s still a peculiar setup and made me uncomfortable the first time. The discomfort has passed and I still manage to do pre-scan bathroom dance parties just fine.
the roll away bathroom door
The Scan
Unfortunately I don’t have photos of the imaging room, because it’s quick to go in and lay down right away. They will lay you down on the narrow table, and then slide a foam support underneath your legs (make sure you ask if they don’t). They will secure your arms so that you’re not fighting to stay still and comfortable the whole time. There’s no special breathing exercises or loud noises with a gallium scan. It’s really quite relaxing and I sleep most of it. You just can’t move of course. I’d recommend closing your eyes right away, I keep them closed. However this type of imaging is very open, it’s not claustrophobic like an MRI. You could actually have someone in the room with you pre-covid days. They just have to leave the last 2 mins because of the CT scan they perform at the end.
And that’s it! They will remove your IV, and you can do your victory walk/dance. I was too tired to do a dance, so I managed a rocky walk out of the hospital. This is the end of the imaging portion but it’s not the end of your feeling like crap (lol) for lack of a better word.
Aftercare
When we think of after-care we think bubble baths and rest, and yes that may be some of it depending on how you feel. However it’s important to be prepared for your body’s mood swings, pain management, and a plan to recover over the next 2-3 days. These radioactive tracers they inject into us find their way to our tumors, so despite them saying we won’t react… our tumors are still filled with a substance that makes them more activated. That’s not accounting for our mast cell response either, so you may have to follow with the appropriate medication response as well. You may feel inflammation in your lymph nodes, a tightness in your neck, tension and muscle spasms may increase, and pain in the abdomen. This is how my body responds anyway, so it’s more important than ever to flush it out by hydrating hydrating hydrating some more. You may want to do some journaling, netflix binging, or anything that allows you to get that sh*t out. I’m personally writing this blog to do just that – and to help all my zebra friends, but you know whatevs.
I like to finish my day with some comfort food, but I’ll warn you – if you eat something with tyramine or histamine, don’t say I didn’t warn you. It’s not the time in my opinion to make matters worse, so if you can eat something comforting but not tumor aggravating – I’d highly recommend lol.
Don’t be like me and hulk out by throwing your quesadilla, swear crying, and then have to switch pants with your husband to get relief from the belly pain. I have now prepared you for most unexpected events. I wish you an uneventful and pain free scan!
You totally got this my zebra friend, you are prepared now and just have one job: stay fabulous!
Follow along with my social media for daily content @pheovsfabulous
This information is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in-depth knowledge of your medical history and current situation.
I’ve come to a few realizations throughout the pandemic, as we all have. I had been living in isolation for years prior. Nothing had really changed – except me. I had changed, there was a shift, and I was beginning to see progress. We were guarded but hopeful – seeing changes that had never taken place before. Improvements that didn’t seem possible.
My days changed what seemed like overnight, a typical day for me was singing non sensical songs from my living room hospital bed to my husband. Him buying me makeup to cheer me up that I was too tired to use. Smiling through the pain so that my husband wouldn’t worry so much. Dreaming of when things would change.
My most exciting moment in a day was which injection will hurt less. A really wild day was being able to get in the bathtub. You get the picture, so when we saw I was making major progress – we wanted to actually enjoy it.
Not so fast, hello covid. Worldwide pandemic, really?
I didn’t feel my complaints were valid, with all that was going on in the world – I wasn’t going to whine that I couldn’t use my new found freedom to walk in the mall. People were losing family members, so I didn’t feel right complaining that mine wouldn’t be able to see me walk for the first time in years. Everyone was feeling loneliness, so who was I to be upset about my friends not seeing this new version of me? The friends who stuck by my side even when I couldn’t open my eyes long enough to say hello. The friends who never knew if Iād suddenly start painfully thrashing in my bed, on full display. The ones who would see a shell of my former self one moment, and a rare glimpse of my fabulous the next. I wanted them to see my bright eyes, full of vitality, I wanted everyone to see this Miranda 2.0
I wanted people to be around me without feeling fear of when my attacks would come crashing into our visit. I wanted my loved ones to be at ease in my presence, not constantly on guard – in fear of me.
Even though I wanted to be celebrated and seen, I’d have to be okay with experiencing it myself for now. Just me and my husband, getting to know the new me, the new āweā. The new found freedom would be used to bake my husband’s favourite cookies, my bright eyes looking at him full of vitality. Him looking back at me with such awe and admiration. I used my new legs to take peaceful walks, what a feeling. I found such gratitude in every moment that I could see, speak, and move on my own.
During this time, I didn’t just heal physically – I was forced to take a look deep inside. I didn’t know I was healing, I was still so cautiously optimistic. I began reading again, something I hadn’t been able to do for years. I started to read for enjoyment, and then switched to personal development. I listened to podcasts, I learned everything I could about fight or flight and how it impacts the body long term. I wanted to know myself, why I am the way I am.
I craved control and just wanted to fix myself. I tried to āfixā myself everyday. I needed healing, not fixing.
I eliminated foods I wasn’t willing to eliminate before, changed my lifestyle, I meditated every day. This was the first time in my life with cancer that I had a break from treatment. I wanted to eliminate the fear of uncertainty, I craved that breath of relief. I didn’t know what I was searching for, but all along it was a feeling of ease. I didn’t know that was possible for me, after all, this cancer is incurable.
Every day, as I began healing physically – walked an extra few steps, swam further in the pool, stopped relying on my wheelchair, took the seat off the toilet, as my legs became stronger, my mind became clearer…
But my emotional health was getting rocky, my emotions were up and down. I was feeling triggered often, I knew I needed help with my trauma response.
I knew my past journey would eventually take a toll, not many people get so close to death and live to tell the tale. It’s not all sunshine, rainbows, and gratitude.
It’s moments of paralyzing post traumatic stress, it’s wondering āwhymeā, it’s guilt, and it’s anger. PTSD comes in all forms, rushing back at any given moment, and it’s not always a vivid flash back. It can be a smell which leads to an irritation without knowing why. It can be sweating which reminds me of the feeling of my hot skin not being able to leave my bed, which leads to a sadness, or just numb. The ‘why me’ phase is accompanied by the sadness and grief for all those who didn’t have the same turn around as you. The guilt is being the one who did. Anger is why the F did it ever get this bad? Anger for being misdiagnosed so many damn times, not once, not twice, not 3 times, countless times.
Why did I have to suffer so badly to find reprieve? Why was I not seen SO many times? Why was I not heard? How can I prevent this from happening again and again? I did everything right. There must be something more. WHY!?
Acceptance, healing.
I share to heal, I share to help others navigate their own pain, I share to live out my purpose. I share to surrender all of these feelings to a higher power. I can’t carry them with me, no one should. I smile because I am here, to give you a glimpse into my highs and lows. As I called it, the good, the bad, and the fab.
When I began writing this, it was to speak about my realization. As I’ve been doing a bit more, safe visits, walks, social stimulation – I’m unable to handle as much as I thought. With all of that private inner healing, all of my physical accolades I saw, I craved the day where I could show it off.
I was hit with a swift reminder that I am still very limited. I have limitations I didn’t even know of, and thanks to all of my learning, I now know why. Things I used to just push through and think were my ānormalā, I now know the importance of listening to and respecting. I now know how to honour my body. I know the mechanics behind the overstimulation, the symptoms I experience with sounds, my triggers, and how to respond.
So as much as I felt frustrated, my ego loudly saying “we worked this hard only to have the same outcome?!” I had to ground myself and remind how far I’ve come. Which is what led me to the blog I first shared at the beginning of this post. If you missed it, you can read it here.
Iām not running a marathon anytime soon but I made it to the water without the help of my wheelchair today and I havenāt done anything ācrazyā like that in a long time!
The reason why I wanted to share this is because weāre far too hard on ourselves and we donāt celebrate the small stuff. Iāve come such a long way and I donāt ever recognize some major milestones even though they may seem like small ones. Itās about time we realize things like this may not come around again. So celebrate EVERYTHING!
Although I shared this a couple of years ago, my words resonate with me more than ever today. So rather than focus on what didn’t happen, or the things I couldn’t do, or can’t do, I’m going to re-focus on the things I can. I’m going to focus on the fact that I GET to do all of these things, it’s give and take.
Leaving my safe space means I will have to be over-prepared, and yes I will feel it afterward. My body will go in a flare if I eat something it doesn’t like, I can flare when there’s too much excitement, too many voices, or just a smell that I can’t tolerate. I will be in pain when doing anything out of my norm.
Before, all of the same things would have happened… but I’d have no idea WHY or what to do in response. Now I’m aware, and able.
I’m so proud of how far I’ve come. I didn’t have to do any of the work I’ve done to help myself, but I chose to. Just as I choose to wake up every day and feel so happy. Just as I choose to to be my own best advocate. I choose to thrive. I am grateful, for knowing my limits and for those around me who care enough to get to know them as well.
When I look back and read some of my previous blog posts, like this one – I can’t help but smile. As I write this with warm happy tears on my cheek, I’m smiling. I smile as I remember all of the trauma I’ve endured, but chose to be happy anyway. I smile when I remember how badly I wanted others to feel less alone when I myself felt so lonely. I smile because I wrote my blog to share my story as a comfort for those who are experiencing similar circumstances, yet here I am being reminded of how far I’ve come
On Jan 3rd, 2019 I wrote “I have a long road ahead of me, but as long as I keep smiling, Iām sure my fabulous can get through anything”
My words act as a reminder to me today, and more than ever – I am hoping the same for you
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
I was recently interviewed by a lovely young woman named Audrey. She has a beautiful blog about different forms of self care, personal growth, and healing. Through our shared interest in self care and sharing, we connected instantly.
When she shared with me a bit of why she wanted to have a perspective from a cancer thriver, I connected with her even more.
Her mum has cancer, and she wanted to be able to learn as much as she could to support her the best way possible. Her mission to learn and share was something I resonated with greatly, and so I offered any advice I could based on my years of living through almost every stage of this disease.
Audrey didnāt realize it at the time, but just by asking how to support her loved oneā¦. She had already done the most important step!
The interview touches on a bit of my story and history, and leads into ways I recommend supporting a loved one with an illness. I will link the full interview here
Another amazing thriver was also interviewed, two different stories, but we all share one thing in common. Cancer doesnāt care if youāre healthy, it doesnāt care about your age, if you eat well, or train 7 days a week. It happens at random, it isnāt something we can control.
Sometimes the best we can do is just navigate this life the best we can, and offer advice for others how they can support their loved ones.
Some of my favourite quotes from the interview:
āI made a promise that day that this disease will never take my āfabulousā which to me is who you are. Itās your smile, your light, your laugh, beauty, sarcasm, humour, all of the little things that make us who we areā
āPositively, this disease in my opinion brought me my husband. We began dating during my first diagnosis at 19, and it showed me what unconditional love looks like. Negatively, Iāve never experienced anything ānormalā as a young adult shouldā
āAs far as practicality goes, try and think of all the things that you take care of in a day. Then think of how that might be difficult for someone fighting cancer. Brainstorm what you think could be helpful, it doesnāt have to be a big thing. It can be such a small gesture but to us it can change our entire mindset. Even offering to walk someoneās dogs is hugeā
āI like to break it down in a way where I consider emotional support, physical support, and financial. Ask yourself how you can help a friend or loved one in those categoriesā
āMy best advice is to know that, understand that, and learn how to support them in the different stages of the disease. Even the āafterā, take the time to know how you can support them emotionally and not just act like itās behind them. Thatās often more damaging and hurtful than anything elseā
āEveryone is different, and we all have different ways we like to be supported. Some donāt want to be consider a āfighterā, youāll notice I used the term thriver throughout this entire interview. Thatās because I donāt want to be fighting with something the rest of my lifeā
āEmpower them with information, help be their advocate, and most of allā¦ remember who they ARE! Help them not let cancer take away their āfabulousāā
You may have heard this term before, maybe even more so recently. Maybe itās happened to you, itās not something new, but rather something thatās being acknowledged and talked about more.
So what is medical gaslighting?
(gaslighting) ā the repeated denial of someoneās reality in an attempt to invalidate or dismiss them ā is a form of emotional abuse.
(Medical) gaslighting happens when health-care professionals downplay or blow off symptoms you know youāre feeling and instead try to convince you theyāre caused by something elseāor even that youāre imagining them.
It can sometimes be tricky to identify when itās happening, sometimes itās a clear refusal to treat or acknowledge a patientās symptoms. Sometimes they will acknowledge the symptoms but not want to treat you. However, it doesnāt always happen through words. Some examples of non verbal can happen through: prolonged silence, a condescending sigh, sarcasm, a tone of disbelief or disapproval. None of which will be noted in your medical file, only imprinted on your heart and in your mind. When replaying the events, and asked āwell what did they say?ā You may not be able to recount a time that they ever outright told you that youāre over-exaggerating, only you will have felt the dismissal through those non verbal communications. You will leave with no answers, more questions than when you began.
After this happens to us, we often leave questioning our own reality regarding our condition, which can lead us to not wanting to talk about the severity our symptoms anymore, or at all. Leading to a prolonged diagnosis, and danger to our ongoing health.
Which leads me to why Iām speaking out about it. Most of you know me for being an advocate for rare cancer, and more so, always having a positive outlook or spin on tough situations.
Talking about a tough situation doesnāt make me less positive or weaken our strength, it empowers us with the ability to move forward with our same positive outlook. I donāt want any one situation to disable my ability to speak for myself, advocate for myself, or cripple me with fear. For quite some time, this was the case. The moment I sensed it was happening to me, I would just freeze. I couldnāt speak, Iād instantly get emotional, and I would be filled with fear that Iād be dismissed and get sicker all over again. I wouldnāt want to repeat the events so I too would diminish the severity of my symptoms.
Why? before I knew what the term āmedical gaslightingā meant, before I even heard of it, it happened to me for years unknowingly. My clear symptoms being blown off as anxiety by my specialist is what led me to receiving an incurable advanced stage diagnosis of metastatic pheochromocytoma.
Iāve come a long way from that period, and Iāve used it to learn how to fiercely advocate for myself. To know what type of care Iām entitled to, and to know my rights when it comes to my health. Sometimes, it just takes ONE situation to make you feel like youāve gone backwards. By sharing, this is me taking the step to go forwards and hopefully empower you to feel the same.
I just want to be clear, my current team of doctors and specialists are I-N-C-R-E-D-I-B-L-E. The problem is, during an emergency, you canāt always wait to see your specialist or main doctor. Sometimes, we require emergency careā¦
My chest is heavy as Iām writing this, I didnāt realize how hard this was going to be. Regardlessā¦
Iām going to share about what happened a couple of nights ago when we had to go to emergency.
I was having a great day, I felt better than I had in a long time. I was relaxed and going to work on a DIY wreath. I suddenly felt a āpinched nerveā type feeling in the right side of my neck. So I decided to just relax for the night and watch a show. I got extremely weak and felt overcome. Then a sudden headache hit me. I wasnāt sure if I was going into some type of flare, so I took the necessary medications when that happens. Still no change, so I went to pick up my phone and record a āstoryā post to say I wasnāt feeling well. When suddenly I noticed that my eye looked strange. One looked enlarged and had a weird glare, my pupil was misshaped, my eyes didnāt match! I was sure it was the video, so I took a photo. I had never experienced this before, I asked my husband to look and he confirmed one pupil was much larger than the other. I went in the bright light of the bathroom, both pupils returned to a smaller size. I stepped back out into the dim lit living room to re-check, and they then went two different sizes again. Then they just stayed like that. Of course I knew this could be a number of things, but since I had no history of it happening, a sudden change like this is worrisome.
One pupil larger than the other
I sat there weighing my options:
Go only if it gets worse (potentially too late if itās a precursor to a neurological event like a stroke or aneurysm) ORā¦
Go right now while I can still speak clearly for myself and donāt require emergent complex care
When I go to emergency, like most chronic disease patients, it has to be for something BIG. Something that I have no power to treat myself, something that canāt wait until tomorrow. It often takes multiple people and specialists to convince me to even go.
This was a time where I certainly couldnāt know the seriousness of the event myself. I also couldnāt risk going to sleep and waiting to see my doctor. My thought was: Iāll never forgive myself if I donāt go get checked and it gets worse before tomorrow. Put on your big girl pants and GO, Miranda.
So thatās what I did, I grabbed my hospital āgo bagā and all of my supplies needed to speak for myself if Iām unable. My medical ID bracelet, medical resume which outlines my conditions, allergies, and life saving emergency room protocols in the event I go into crisis. We began mechanically preparing for something weāve done hundreds of time. Knowing that it can either go extremely well, orā¦.. the opposite
My local emergency rooms have been experiencing extreme understaffing, and even close the emerg 3-4 times a week. Even before covid, Iāve not had the best experiences. So we made the decision to drive 1 hour from home to a hospital that I had never been. A blank slate, I felt good about it, and knew it would not be filled with people and covid cases since itās a very rural hospital.
We arrived to an empty parking lot, an empty waiting room, not a soul in sight. At first we thought this was a good thing, no worries of getting sick or having to be isolated. Low wait times, and all of the care directed towards me since Iām the only one there. High five!
Empty emergency room
I was triaged right away, my husband who is my primary caregiver couldnāt be with me due to covid. So I explained everything that had happened in detail, and added that I have a very rare cancer with some secondary conditions. All information is relevant when visiting emergency, itās not up to me to decide what they need to get a clear picture. So I give them the basic facts needed for this visit and let them ask the rest.
I was immediately called, to where I was met by a nurse who immediately told me to go into the exam room. I asked if she had been informed of my emergency protocols that the triage nurse took copy of, *if I am going to have to be alone in a room without supervision in a hospital with no one aroundā¦ for my own safety I have to know that if Iād go into crisis, they know how to respond properly. This is something I have to bring up any time I will be alone, or when Iām at higher risk of crisis. Since I canāt be treated with an epi-pen and thereās conflicting conditions, itās not something I can choose to leave out.
She responded with sarcasm that No, she was not informed in the 30 seconds it took to call my name.
I laughed and replied that I get it, my bad! I then proceeded to explain WHY itās necessary for all of us to be on the same page and that my protocols are designed for emergency room settings by my specialists to outline how to treat my specific case IF any of the following happen.
She cut me off mid sentence and said āI REALLY donāt careā and stormed out of the room. Leaving my husband and I to stand there and wonderā¦ is this how the rest of the night will be?
He instantly reassured me āwell, sheās just one person! The doctor will be niceā and I was just grateful that he could be there to be the one to respond IF anything should change with my health. He has all of my injections and medications with him at all times, and knows better than anyone the signs of when to use them.
The doctor came in without introducing herself, and began the norm of asking about why I was there. I started with my eyes, being the main reason I had come in. And then followed with the precipitating symptoms that made the eye issue more worrisome, the neck and head pain. I began having trouble explaining myself, so my husband added the time of when it all began to help me out. She abruptly looks at my husband and says āso she canāt speak for herself? Youāre here because she canāt speak on her own? Youāre here to speak on her behalf?ā
Not that I need to defend this, but yes. My husband literally is there for when I canāt speak for myself. Stress makes it sometimes impossible for me to get a clear speech, I can be fine one moment and then unable to speak or think clearly the next. Itās happened many many times, and itās the most terrifying thing to happen to a person. Especially when surrounded by strangers.
I then spoke for myself, answering to why he is there. Explaining what I tried to explain to the nurse. I was preparing for the chance that if I had to be kept for observation, they would understand the severity in which my health can change. From one second to the next, which is why itās essential for everyone treating me to read and understand the protocols. IF anything were to happen, it needs to be decided within seconds. Those seconds are what will make the difference between life and death.
Rather than asking me more about it or if itās happened before, she replied by saying āso then we can do that for you. He doesnāt have to be here, if anything changes we are capable of knowing if you canāt speak. Or do you think we arenāt capable?ā
I could already know by the clipped tone, sarcasm, and tension in the room that I was no longer comfortable. This is the very beginnings of my exam, and we havenāt even begun to speak about WHY I am there. I didnāt feel confident in the surroundings, if you put yourself in my shoes. I have a rare condition thatās already often misunderstood, and require a basic level of understanding in order to be safe. If this level is not met, I am not being left in the care of people who are responsible for my life.
I didnāt want to argue, so to avoid putting fuel on the fire, I calmly explained that Iām not questioning their capability. Itās just if Iām alone in a room, and it happens within seconds, in the event Iām unable to speak, logically I canāt ask for help. I canāt call for assistance, so yes, my husband IS in fact there to speak for me in the event that I cannot.
What happened next is what truly caught me off guard and I knew I wasnāt going to be able to stay there should I absolutely need to.
I wanted to get back to the point of why I came to emergency, and have a proper exam for my eyes. So I redirected the conversation and said ācan I tell you why Iām here?ā She threw down her clipboard and replied āI HOPE you know why youāre here, they woke me up in the middle of the night for this!ā
In that moment, I lost all hope for a decent exchange. I was made to feel that I was inconveniencing everyone, that my issue clearly didnāt warrant an emergency. I pushed through my inner voice telling me to just leave, and reminded myself that if I leave without so much as an opinion I will be right where I started. I will have to re-do this at another emerg, and I have a right to proper care. I reminded myself of what I preach, and decided I wonāt let this stop me from what I came to do. Ask for help, receive care from the people who are there for that very reason.
At this point she began a basic neuro exam, repeating the questions about what brought me in. Each time she repeated her question, it was said in a more condescending way. (Non verbal cues) she began mixing the order of what I had told her. The neck pain, followed by the sudden headache, and then the pupil dilated. I corrected the order, to which she replied āso you had a headache and you took a Tylenol and it got all better? You took an Advil? A Tylenol? A motrin? What did you take?!ā(No where did I say I took anything for my headache) āokay so then your headache wasnāt bad enough to take a Tylenol AND it went away?ā
No, I just donāt typically take TYLENOL for my type of headaches. I take a steroid or an antihistamine depending on what type of headache I think it is. This exchange continued on for a bit, the accusatory tone, the trip me up questioning. All of which I endured to get a proper response about why I had come.
My husband patiently waited to interject and let her know that Iāve had two previous strokes. Which is why we found it of urgency to come in and get this checked. We wouldnāt think of coming to the hospital unless itās an EMERGENCY.
She didnāt seem to find it very concerning, instead she asked me āwell why isnāt THAT in your chart then, if youāve had a stroke, wouldnāt you include it in here?ā
I was caught off guard and stunned, so he replied for me. āIt happened before her adrenaline was controlled, before she was diagnosedā I always include my most current conditions, because a lot has happened and I canāt fit them all on one page, I donāt think I could fit them in one book let alone a page.
I went along with the touch your nose then my finger game, walked a straight line, and āpassed the examā.
She then began to finally explain that they donāt do labs at night, she canāt take my blood, she canāt do a scan, they donāt do anything in the night hours. They are there for emergencies only. A-ha, finally. The confirmation that I am not by their standard an āemergencyā. Okay, see ya!
But then ā¦.āeven if I DID do a scan, it wonāt tell me anything because youāre not symptomatic anymoreā
Me: āokay, soā¦ if thereās nothing we can do, do I just go home?ā
Doctor: āwell, we can keep you to observe you to see if it happens againā
Me: āokay and if it doesā¦, thatās when we would do tests and a scan?ā
Doctor: āwell maybe, MAYBE in the morningā
Me: āso if it DOES happen again, what would you do?ā
Doctor: āwell like I said we will just monitor you and see if it doesā
(Still unclear as to what that will achieve if theyāre unable to do blood work or imaging)
Doctor: āI mean youāre fine now, your neuro exam is fine, youāre not having the symptoms anymoreā
Me: āokay so I can just go home then? If thereās nothing, I can monitor myself and go to a hospital if it changes?ā
At this point sheās said Iām fine more than once, made me feel Iām there for nothing, that thereās nothing they can do at their facility to look further into it. Itās not a guarantee that they will do anything further even when they ARE able to. So the logical conclusion is that I go home and wait for something more to happen and seek care IF it does. If not, see one of my doctors in regular clinic hours.
The doctor then says āokay, well Iāll give you two some time to decide what YOU would like to doā
My husband and I are sitting there looking at each other with the same thought, why are WE (the patient) being told to decide what should happen? Is it to not be liable if something does in fact happen tonight? Either way, at this point you couldnāt have paid me to stay in their care. So I got dressed, and we firmly decided to go home and sort out another plan of action if we could make it through the next 4-5 hours till the doctors open up.
When things changedā¦
She returned into my room, me fully dressed, standing ready to leave. I thanked her for her time, and proceeded to explain Iād feel safer being at home and will go to a bigger hospital if the symptoms return.
She was completely stunned, which surprised us, now her whole demeanour changed, her mindset, her outlook on my current āconditionā. She began back peddling and referring to me as a stroke patient. (What?!) she never once mentioned the risk of stroke, even though thatās EXACTLY why I came in the first place.
The entire time I had been there, I was made to question why I was there. That I wasnāt an emergency, not even a brief talk about what could have caused it. The entire exchange was bizarre, and downplayed to the point where of course it made more sense for me to go home and seek an alternate opinion.
The very same doctor then began to speak with more urgency about how I can be fine at this moment, but the same āneurologicalā event that brought me in can happen again and again until POW! āThe big oneā happens. Referring to mini strokes and then a large stroke. To which maybe it will be too late to go to the hospital.
Stunned, confused, and curious, I asked: āsoā¦. If I stayed, and you monitor me, and even if the ābig oneā happens, what would you do?ā
Doctor: āwell we would still have to ambulate you to the other hospital that could treat you (an hour away where we live). But I still wouldnāt send my stroke patients there! If I had a choice, Iād send them to the civicā (by which she means a larger teaching hospital in a different province) but since itās a different province, I canāt do that. So Iād have to send you to the other hospitalā
Me: āokayā¦ well, our home is much closer to that hospital compared to here. We are just minutes away VS the hour it would take for you to get me there. So for me it still makes more sense to be home, and that way we can make a choice depending on the severity whether we ambulate there or jump in the car to the civic across the bridgeā
Doctor: āif you stay here we can monitor you and maybe do a scan in the morning, I see youāre allergic to ādyeā (meaning my life threatening allergy to iodine) but I mean if we need to do a CT under emergency we will ājust do itā
Me: āummm, you canāt just ādo itā when someone has a life threatening allergy to iodine. This is is one of the reasons Iām safer at home. If you were to administer iodine even by error, you canāt give me an epi pen when I go into anaphylaxis. THIS is what I tried to explain in the protocols earlier, to you AND your nurseā
Out of curiosity, I then asked āwhat if I just went to the civic directly now and have them do the scan? Oh right, you said they wouldnāt see anything anyway right?ā
*crickets* ugh.. ughā¦ wellā¦ not necessarily
Like, Iām sorry, but why scare me now? I had been here for an explanation or a severity level of how worried I should be the entire time. To which I was made to question why I was even there and scolded for waking you up. But only when Iām walking out the door, thatās when we get berated about the danger of the situation? Suddenly Iām a āstroke patientā? Suddenly everything changes? No. I wonāt be roped into this ping pong match. I wonāt continue these mind games. I am standing my ground, and I am leaving. I am getting far away, and I will not be made to feel that I AM the one whoās doing something wrong.
The aftermathā¦
Everything about this entire experience was wrong, and the one thing I do have the control over is where I go and when. Right now, Iām going to where I am safe. Home. Within closer proximity to hospitals should I need to go. I will be under the care and supervision of my husband who knows my vitals and cues of when thereās something wrong. I will be safe
As we left the hospital, I again thanked them for their time. I gave grace and understanding that wasnāt deserved, I allowed more room impatience due to the pandemic. I wanted to start and finish by being kind regardless of how I was treated in return. Still, I couldnāt help but leave feeling more confused and scared then when I first came.
That confusion was followed by anger, and outrage. WHY did this happen again?
Iām nice, Iām calm, Iām organized, I provide all of the facts, I am a great advocate, I have logic, I donāt quote google, I awaited every opportunity to be examined and so badly wanted to be given the clear or some type of explanation as to what had happened to me. Instead I was made to feel my symptoms were nothing at first, it was downplayed, dismissed, and then confused even further when suddenly it became a big scary thing. It made no sense
I arrived home, and within 20 minutes, and in the dim light, my pupils became different sizes again. I wondered to myself, why didnāt she do my eye test in different lighting based on what I told her? I was so exhausted at this point, I took another photo, and decided Iām going to sleep.
We made a plan as to what we would do in the event of the āwhat ifāsā. My husband stayed up all night doing checks, and we made it to morning.
I was so exhausted yesterday, just mentally exhausted from the whole experience. I slept until 8:30pm last night. I was proud that I stood my ground and left, but couldnāt help but wonder what we would have done had my current condition been more unstable.
This isnāt the first time something like this has happened to us, and Iām certain it wonāt be the last. Yesterday my husband spent the morning and afternoon contacting every doctor I have to get their opinion on how to proceed. Who to get help from, etc.
Most of the answers pointed towards neuro. So we arranged an emergency appt with my neuro, and we just spoke on the phone. I explained the situation, he congratulated us for knowing so much. For doing the right things at home, for documenting how the eyes respond in different lights, for being able to tell the story with such a good recount. All of which led him to ordering an MRI of my neck and head right on the phone, focusing on the artery in my neck. (The pinched nerve I felt at first) after discussing, he quickly realized itās most likely not the eye that was larger thatās the issue, but maybe the eye that is smaller: based on the clues I gave about both eyes constricting while in bright light, but then one going larger in the dim light. He said itās normal for eyes to go larger, but itās NOT normal for one to constrict. So the opposite eye may be the issue, the one that stayed small. See?! Doctor/patient team work at its finest.
I wish I had a clear explanation as to what you can do in the event that this happens, but itās very situational. One major thing I want to make clear:
Never feel pressured to stay somewhere that you are not comfortable.
Never feel you have to do anything you arenāt comfortable doing
Never feel you donāt have the option to get a second opinion
Never feel that you arenāt entitled to leave and seek help elsewhere
If itās unsafe to leave, but you arenāt comfortable in the care where you are, you can request a medi transfer to another hospital who has the means to treat you.
The reason Iām sharing this is to let you know that it can happen, and you have every right to feel outrage. We have a right to proper care, and not be made to feel as if weāve done something wrong when seeking medical attention
Emergency situations are a bit more tricky depending on the severity of your condition, but as I said, IF you arenāt feeling heard or safe, but canāt leave that hospital, please reach out to the patient advocacy number for that hospital and get help.
I was fortunate in THIS situation to be able to speak for myself, to have someone I trust with me to validate what happened. To confirm itās not just āin my headā. But if you donāt, share within a patient support group. Anywhere that you can get support and be reassured.
Above all, please donāt let this prevent you from seeking medical attention when needed. I was so hesitant to go to the hospital a couple nights ago, and all of my fears were confirmed despite how prepared I was, despite how kind I was. But Iām not letting that stop me from getting the care that I require to keep me safe and THRIVING.
I have no answers just yet about why my pupils did this, and whatās going on. But I now have leads, we have made progress, and will eventually get answers. Through our own advocacy efforts and reaching out to the patient community with similar conditions, someone was even able to suggest a syndrome that made sense to my neuro. THAT condition is now being investigated, all because of sharing and asking questions. Using technology!
I imagine Iāll have to do a lot of tests that will uncover nothing, some that will eliminate a cause, and eventually one that will uncover it. I however will not stop until I have an answer.
By sharing this, itās my therapeutic release of letting it go and not giving it power over me. My illness isnāt going away, so I need to be confident and able to speak when I can for myself.
I hope in some small way if something similar has happened to you, youāre reminded that itās not your fault. You are deserving and worthy of kindness, patience, and answers.
I havenāt shared since, because I needed time to rest and recover. In the interim I was able to get closer to answers and strongly advocate despite having this happen as a big hiccup.
I always say, we are stronger together. Sharing is often beneficial, and can give a voice to something you have experienced and didnāt know how to feel or how to express it to others.
Thank you for reading, for expressing concern, and for your support.
I can call myself an expert by now, I would estimate in my short time on this earthā¦ Iāve had at least 70 scans. Probably more, but I donāt keep count.
All types of scans, CT with contrast, CT without contrast, MRI, PET scans, MIBG, Octreotide, bone density scans, Gallium 68, and thatās not including your average ultrasounds and x rays.
So, I will hold the title of expert level, I might as well get something out of it. Iām going to give you the best tips I have to be prepared. I find the best way to remove the fear, is to know whatās coming. So hopefully by me sharing what to expect, the things we can control, it will eliminate some of the anxiety leading up to it.
Yesterdayās scan was an MRI, not my favourite type of scan. But then again, they all have their woes.
A lot of people askā¦
āwhat is the best type of scan to get for a Pheochromocytoma?ā but hereās the thingā¦ it is so specific to your case.
Specific to the timing, is it diagnostic OR prognostic? Is it a follow up after surgery? Is it to see the tumor size or is it to see the tumor activity? Is it to see if youāre eligible for future treatment?
See, thereās no one size fits all answer.
But since this isnāt going to be about all the different types of scans, I will focus on the one I had yesterday: the MRI
Iām normally a CT girl, not because itās the best, or because itās easier – quite the opposite. A CT is normally best for diagnostic imaging, itās less detailed than an MRI, but gets a good overall view of the body. But Iām deathly allergic to iodine, which is the injectable solution used to light up your insides. So when I do a CT, I have to go through an exhausting allergy prep in order to safely get imaging. I canāt help but giggle, having a rare cancer that requires constant imaging but being allergic to the process. Awesome.
Salt in the wound, am I right?
So because earlier this year we discovered the link between my pheo and mast cell disease, making it no longer ājust an allergyā but a life threatening anaphylactic condition, we switched to MRI.
Still with me?
MRI also requires an injectable solution, called gadolinium. But the chances of having a reaction to it are very low. I still prep, and Iām cautious, and I still feel the aftermath of it in my body for a couple of days. But nothing life threatening, phew.
An MRI is a more detailed image, so as previously mentioned, for me it makes sense as we already know I have cancer. Weāre not looking for it, or diagnosing it, we want to see all the gory details. We want to see detailed imagery if it has metastasized further, if itās grown or perhaps shrunk, or if itās magically disappeared? A girl can dream.
Before I go into explaining what an imaging day looks like, and what to expect DURING an MRIā¦ I want to talk about what the before, leading up to it.
In the weeks leading up to my scan, I get a nervous energy that I donāt even realize I have. I get very fixated on certain tasks, I get a bit scattered, foggy, yet I canāt settle down or rest. I feel the need to always be doing something, planning something, or helping someone else. Itās my way of not focusing on what is about to happen.
In the days leading up to my scan, I allow myself to realize the impact of whatās about to come. What this scan will mean to my future. My brain tries and tries to acknowledge both outcomes, but I donāt allow that.
I refocus my mindset to the impact of hearing the good news, I only focus on the good news. This may seem like blind hope, but to me, why focus on the things we canāt change?
Until there IS a problem, why create one?
I used to always go in with the attitude of expecting the worse but hoping for the best. It was a way of protecting myself and not having my world shattered if I heard bad news, and letās be realā¦ I heard a lot of bad news. So it became a routine, Iād go in, do my scan, and deep down knee what was to come.
Only in the last few months did that start to change, my life has changed. Well, my quality of life I should say.
Feeling hope to this magnitude, itās a tricky thing. As previously mentioned, hope can be the hardest thing to have. In fear of it being ripped away, which has happened to me quite a few times.
But I canāt live a life expecting misery and feel no hope and dream no dreams, because that wouldnāt be a very nice existence. So I reframe my mindset to feeling hopeful, manifesting healing, dreaming of whatās to come, and praying for another miracle.
I figure, no matter what the outcome, I will deal with that when the time comes. I canāt control the outcome, but I can control my feelings leading up to it. A-ha! See?
With cancer, or any chronic illness really, we often feel so helpless. Not in control of our own bodies, our minds, our future. So I like to be in control of anything I can. In my mission statement I wrote āholding onto my fabulous is the one thing I can controlā and thatās still true.
Except I realized my āfabulousā is much more than just lipstick or hair. Itās who I am, itās everything that makes me, me!ā¦
So if I had one piece of advice to those of you who are experiencing scanxiety – itās to acknowledge the possibility of both outcomes, but put your focus on the one you want. Itās okay to quickly consider the alternative, but donāt allow it consume you. Ask for prayer, ask for love, good energy, ask for support. Do what you need to do to feel hopeful.
Set your intention on the good, and in the days leading up to your scanā¦ live your life as normal. Go about your day, clean your house, exercise, bake, talk to your friends and family, make homemade pizzas with your kids, shop till you drop. Do whatever makes you feel good, and most of all, normal.
I canāt tell you just how many sugar free cookies I baked, and how many celebratory outfits I ordered. Yes, celebratory. BecauseI fully intend to be celebrating the outcome. Thatās the intention I set, and every day leading up to the scan, I meditated about it, I sang about it, I cried about it.
And now Iām writing about it. Iām putting it out into the universe
It
Will
Be
Okay
When I began writing this blog today, I wanted to explain the process of an MRI to take a bit of the unknown out of it for others. But Iām happy it turned into something different, because I love sharing my heart with you. Letās be real, we donāt come to pheovsfabulous for the science šš
Letās walk through what the day looks like, and some practical tips to prepare!
Confidence comes from being prepared
First step, we drive 3 hours to get imaging, so youāre going to want to be comfortable. I said comfortable, not boring. Thereās nothing boring about us, we need to feel cute! Look good feel good, am I right? Ladies AND gents!
Me, Gallium, and my āhospital bagā
1. Choose your outfit, and make it a good one. Something that makes you feel like you can take on anything. An outfit that makes you feel POWER, and confident!
2. Prepare your hospital bag, yes, you need this! Even if your hospital is close by, you need to have certain essentials to get you through the day. Since my hospital is out of town, I always bring a small bag of toiletries just INCASE anything unexpected were to happen.
Medications, maybe a book, a good luck charm, lipgloss, you know, the essentials. I always bring my fighting pretty gloves for strength, and a stuffed animal for comfort. This time, I brought gallium. Heās my scanner buddy. More importantly, your medical resume. This is your road map for emergency protocols, allergies, history. I show you how to create that here. If ever you were to have a reaction or go into crisis and couldnāt speak, this is going to be their guide.
3. Create a playlist that pumps you up, gives you happy vibes, and passes the time. You can even listen to an encouraging podcast or whatever youāre into.
4. Prep food and drinks for your trip, takeout is hard when youāre following a low tyramine/histamine diet and allergic to nuts. This is a fasting MRI, so youāre going to be hangry. I suggest bringing at least protein bar to devour the moment youāre done the scan. We bring a small cooler and prepare for the day. We didnāt used to do this and since we have, itās made such a difference.
5. Pillows, blanket, neck pillow. Anything thatās going to make your road smoother. If you experience chronic pain, sitting in the car for long periods can be tough. I always have a neck pillow in the car as a minimum.
6. Bring slippers! You will have to completely strip down and get into that sexy blue gown, and you donāt want to have to shuffle around in the hospital paper booties too. So bring a pair of slippers to walk around in until your scan.
7. If you wear a wig, you will have to remove it during the scan. (Magnets) I like to bring a bandana or some sort of head covering to be comfortable before and during the imaging. I sometimes sweat quite a bit in reaction to the loud noises and vibrations, and I donāt like coming out with my hair drenched. So I cover my natural hair with a bandana and it helps absorb some of the perspiration.
8. Speaking of noises and vibrations, this is something that bothers quite a few of us. You may want to speak to your doctor about taking something to relieve the anxiety or claustrophobia. Just make sure youāre able to stay awake, as thereās work to do in there!
The MRI:
So now that weāre fully prepared, what should we expect for the MRI?
Our prayer ritual before the scan
You will check in, wait a little in the waiting room, I was allowed to be accompanied by my husband as he is my caregiver. With my conditions, I can need life saving care at any time. I canāt go wandering around alone. If your condition requires special attention or sudden medication, tell them this at the door so that your caregiver can be present up until the actual scan.
āMiranda?ā Your name will be called, and you will be escorted into the injection area. The hospital I went to was lovely and had a private bed to wait in. I appreciate these details with being in so much pain and fighting to keep my eyes open.
The gadolinium injection wonāt take place until during the scan, so youāll need an IV placed. (Hydrate a lot before!) so that your veins will be ready.
The technician will insert the IV, and you will be asked to wait a bit until your turn to be scanned.
You will again be escorted into another room, this time where the MRI scanner lives.
(This is just a sample image to show the scanner)
The MRI is a big white tube, and yes, youāre going in head first. This is why I like to know what to expect, it makes you less nervous when prepared. You will lay on the hard narrow table, there will be a blanket underneath, and if they donāt have a leg wedge set up, ask for one! Thank me later. You will want that elevation to take pressure off your back, the scan will most likely last at least 20 mins, mine was about 30.
They will place a large plastic contraption over the area thatās being scanned, for me, that was my abdomen. This device will be what captures the images, and they will gently secure you to the table with some straps so you donāt have to be worried about positioning.
Before sending you into the MRI, they will place some headphones on you. This will allow the technician to speak to you throughout the test, and you will also hear a voice prompt you when to breathe and when to hold your breath.
My technician was super kind and explained to me to listen to the voice as soon as she says to breathe in, GO. Donāt wait until the instructions are finished, this was really helpful to me so that we didnāt have to repeat the photos.
**Super important tip**
For me, I donāt want to feel like Iām in a tube. So I close my eyes before I go in. I never ever open them, that way I wonāt panic. Everyone is different with this, my husband likes to keep his eyes open and then close when heās ready. It depends if youāre claustrophobic.
Everyone will leave the room, and you will move into the machine. You will begin to hear the prompts almost right away, ātake a deep breath in, now hold your breathā and you will have to hold for about 30 seconds. (I counted)
How do you stay calm during the scan
I practice guided meditations every day, and I learned breath work to calm my nervous system periodically throughout the day. This can all be done through YouTube, type āguided meditationā and you will see a whole bunch of meditation types. Ranging from stress relief, sleep aids, ptsd healing, etc. Doing this on a daily basis allows me to stay calm during ongoing stressful circumstances. During the scan your mind will be used to travelling to your happy place, while still listening to the breathing instructions.
This is our favourite daily meditation
About half way through the scan, the gadolinium will be injected electronically into your IV. Like any contrast, you will feel the āwarm feelingā. AKA you will feel like you just peed yourself. Itās not AS aggressive as the iodine contrast during CT, but you do feel it. This is normal, donāt panic! You didnāt pee! I promise.
The hard part is over, kind of. You will be guided back into the injection room to have your IV removed, and you can be on your way. Go take care of your hanger, eat that protein bar, and drink LOTS of water to flush your kidneys of the dye. And I mean lots! Youāll feel better quicker.
Although the physical part is overā¦ now the mental part is going to take its toll. Leading up to the scan, all that nervous energy you experienced, itās going to be the opposite now.
You will most likely be drained, exhausted, mentally and physically. Itās time to rest and recover. I slept a few hours the moment I got home, and Iāll be honest – experienced a lot of pain. Have your heating pad ready, and whatever you do to control your pain levels. As Iām writing this Iām still pretty stiff. For me, the noise and vibrations of the machine makes my body tense up. Leaving me feeling like I did an extreme an workout when the whole day is done.
Speaking only from my personal experience, once the scan is done, I feel too drained to worry about the results. I did enough of that leading up to it, now itās time to just be and let be.
Worrying will not change the results, but it will make you feel like crap. As we all know, stress is the worst thing for our bodies with this disease.
So now itās time to rest, and do something that really brings you peace. For me, itās doing exactly this. Writing.
This is my therapy, helping others by sharing my experience.
In this post Iām going to give you a road map of how I manage with pain with different techniques for severe flare ups AND daily prevention.
Iāve dealt with my fair share of pain, I remember living day to day at a pain scale of 12+ and couldnāt quite get it under control. I truly suffered for years and pain was my primary issue.
I remember not being able to stand because my feet were so sore, I couldnāt sit because my tailbone hurt so much, and I couldnāt comfortably lay down because my skin literally hurt to the touch. I was miserable. But there were things that we learned along the way that helped significantly, so Iām going to share them. But not before I explain WHY šš¼
Please always consult your team before making any changes. Integrating new techniques into your daily routine is okay, but removing something without your doctorās knowledge can be dangerous.
If you didnāt already know, we heavily advocated for a diagnosis of mast cell disease this year. There was a lot of symptoms not adding up with my primary illnessā¦ and a lot of red flags over the years for MCAS.
Part of having mast cell disease is a chemical and medicationintolerance. Your body doesnāt like a lot of stuff. So the regular pain management approach that was being used for me at that time, was unknowingly making me worse. Much worse
When you have pheochromocytoma or metastatic disease, pain relief can already be tricky since thereās medications that can make the same hormone expression in our bodies as the tumors. Sometimes making us more symptomatic and in more pain.
If you mix mast cell disease into the equation, itās a recipe for disaster.
So what did I do? Well first, we had to evaluate if I was on the right medicationsā¦ or on the wrong ones!
Emergency reference guide for mast cell patients
This is a quick emergency reference guide of medications to avoid and that are better tolerated in most cases of mast cell disease. This is from the mast cell society.
So once I fully detoxed from the bad medications on the list, and began life saving treatment for MCAS, I could now begin my healing journey. It saved me, I could now begin to manage my pain.
All that being said, letās get to pain management!
With such a restriction of traditional pain management, we had to start learning different forms from of relief. I was kind of forced to do so, and Iām actually thankful for that. I donāt think I would have believed how well integrative relief worked if I hadnāt tried it myself. I think that this is something every chronic pain sufferer should know either way.
Mind body connection:
Iām not going to get too scientific, but I was told when I had my very first surgery that the brain will imprint pain.
If the brain gets used to pain, itās difficult to find relief. Which is why itās important to understand the link between the mind body connection.
You canāt just say āokay Iāll be really positive and believe Iām not in pain and itāll go away!ā No, itās much deeper than that.
The more pain we endure, it can make the brain can experience anxiety and depression. Which makes pain worse.
Which is what led me to managing pain in a way where I donāt just throw a pill at it.
I know, it was hard for me to wrap my mind around this too. We are made to believe that medications are the only way of pain relief. Especially in palliative care. But please donāt get me wrong, Iām NOT saying medications are bad, Iām just saying that it takes MORE to truly control pain. Also in my specific circumstances, I didnāt have a choice. With the restrictions on the list above, pain management isnāt easy.
Pain flare:
Letās talk about that sudden, unexpected, all encompassing type pain that makes you feel panic and pushes your body into overdrive. My list may seem extreme, but I promise the more prepared you areā¦. Quality of life improves significantly.
Through panic tears, squeezing headache, nausea and sharp belly jabs, itās difficult to give the body the oxygen it needs to calm down. So thereās a few steps to a flare that I follow. Especially if chest pain is involved.
*if youāre alone, you will want to put aside an emergency pain flare setup. So things can be easily grabbed and accessed. If youāre with someone, they need to know how to respond and what measures to take. Either way, perhaps print the following information and keep it handy. I will also include a list of supplies at the end.
1. First, get to your safe place. For me, this is my bed. My bed offers me the most relief, and I can adjust to how I need to position myself.
2. Elevate your legs, I have an adjustable base, which allows me to put myself in zero gravity with 1 touch. This has been a life saver for me for many reasons, but not everyone has this. Keep some firm pillows or preferably a wedge nearby to quickly access if your bed is not adjustable. Putting your legs into what they call āzero gravityā position means your legs are higher than your heart.
120Ā° angle bend at the hips puts your body in the āzero stress zoneā
Spinal vertebrae are decompressed and muscles are relaxed
Airway and nasal passages are opened up
Elevated legs reduce stress on the heart
Heart and stomach are slightly below the head and knees
I can literally go on and on about the benefits of zero gravity, which is why I have an adjustable bed. In a flare, it will open your airways, reduce the stress on your heart, and put you into a reduced stress zone for pain relief. This is scientifically proven.
Leg wedge pillow example
3. Once youāre in your safe zone, your legs are elevated, you will begin to feel just a tiny bit more calm. I promise. Reducing the feeling of stress and panic to your body will already alter your pain receptors, allowing your body to be less tense, and begin to think more clearly.
4. Heat and Cold Therapy: In a flare state, most likely you will experience sweating, flushing, and added discomforts. Which brings me to my next point: heat and cold therapy.
Having a cooling band for your head will help relieve the inevitable headache you will experience, and it will also cool your body temperature. Cool therapy also can help with nerve pain. So having more than 1 cooking band is a good idea. You can even use a cold wash cloth. Whatever works for you.
Heat therapy is typically a heating pad, or some sort of heat relief. So again having it ready and easily accessible is important. I always have my heating pad rigged and ready to go inmy bed.Always plugged in! The more prepared you are, the smoother these flares become.
5. Massage: most of you are probably reading this and going āwell I donāt have a personal masseuse!ā š and I get that. I promise, I got you!
IF you do have someone able to gently rub your body to relieve the tension the pain is creating, then do so. Not all types of pain allow us to be touched, but if itās not the yucky skin pain, then go ahead with light massage.
If youāre a caregiver reading this, the power of a light touch is incredible. Even if itās just to say āIām hereā without words. This is dependant on your partner or loved one, but I find it very helpful to have my head rubbed lightly during this event. Itās helpful for the body to go into a relaxed state, loosens the muscles, and can alleviate some of the tremors.
So what do you do if youāre by yourself? Well you guys KNOW how much I love Amazon. (Hehehe)
Introducing the massage mat: it can even be heated! Which eliminates the use of a heating pad. So many of you have asked me if I know about a heating pad that hits all areas of the body, so I did my research, V š
Heated massage mat
6. Guided Meditation or sound therapy: okay, Iāll ask you to keep an open mind here. I know a lot of us hear the word meditate and think something entirely different than what it is. Meditation simply means your mind is focusing on a particular thought. Learning how to meditate is incredibly important because if we circle back to the first step, youāre much more likely to achieve a state of reduced panic if youāre able to practice mindfulness. And thatās what meditation is, practicing mindfulness. I had NO idea how to meditate, and honestly? I like to take the guess work out of it. Which is why I use a guided meditation practice. Iām sounding all fancy, but literally just search on YouTube āguided meditationsā. For this specific circumstance, I will link the one that helps me in a pain flare. Itās short, itās specific to pain, and itās very good at calming me down and putting me to sleep. Sleep is the primary end goal in a flare. I will talk more about the benefits of meditation later.
*Once you are able to achieve this mindfulness, you can use this focusing technique during painful procedures, scans, and any situation where you need to disconnect.
āThe mindful movement: healing chronic pain 20 min guided meditationā
Sound therapy means that if youāre unable to listen to someone speak like in a guided meditation, you can use sound healing instead. It operates on a frequency that can offer different forms of relief for your body. Hereās an example of a pain frequency:
Search āpain relief frequencyā or āstress relief frequencyā or whatever form youāre looking for. Itās like spa music but is used as a healing method.
7. This may seem obvious but keeping your flare up emergencymedications close to you in different parts of the house can make all the difference. I keep a mini medication kit beside my bed since thatās my safe place. If Iām experiencing āthat typeā of headache, or anything flare related that can be calmed with medication treatment, I take it before doing anything else. That way it has time to sink in while Iām trying to calm my body.
If you havenāt already noticed, the primary goal of pain management during a flare is to calm the nerves, the nervous system, the mind, itās all about the calm!
8. At this point we should have achieved a state of exhaustion, the pain should be dying down, but we have nothing left in our tank. So itās time to sleep ā¦ sleep is the number 1 restorative factor in our overall health and actually helps with daily pain control. If you get a restorative nightās sleep, your body and cells regenerate and heal. If we reframe our brains and pretend like youāre going to pay 120$ for some special exclusive healing therapy, we might be more motivated to get our moneyās worth!
So what we just went over was mainly considered pain relief type practices, because theyāre meant to reduce pain NOW. But what Iāve learned Iām trying to manage my pain? Itās a full time job!
Daily healing takes time, dedication, education, it can be expensive, and can seem daunting to do on our own. But the way Iāve explained it, Iāve used a lot of selfhealing methods to try and remove some of that burden.
Pain management is the practice of constant self care and prevention techniques, itās treating your body like the precious vessel that it is. Itās self care, itās nutrition, itās movement, itās mindfulness, itās everything we discussed above and much much more.
If you rolled your eyes at any one of those things, I get it. I really do. I am NOT saying āget some fresh air and do some yogaā and youāll feel all better.
I am not minimizing pain nor am I saying itās a one size fits all, Iāve been exposed to chronic pain all of my life in various forms. Iāve grown up witnessing my father suffer in chronic pain from a work accident. My sister having been hit by a car and in an extended coma when I was 12ā¦ Iāve seen pain. I am a 30 year old palliative woman, I GET PAIN. I promise I have the life credentials.
But what I am saying is thatā¦ the thing they donāt teach us in the pain clinics or when people are prescribed heavy narcotics, is that our brains play a powerful role in how we feel. The mind body connection is so important, and once understood and used correctlyā¦ can be life changing.
Iāve gotten angry at people for telling me to take a walk or get fresh air. Especially when I was physically unable to do those things a lot of the time. It wonāt cure you, it wonāt make it go away, but in combination with other daily habits can really help us toward managing our mental AND physical well being.
My husband showed me that no matter what your circumstances, you have to continue to do the things you love. The things that bring you enjoyment and calm. So hopefully I can be that person for you.
If I couldnāt leave bed, Iād get outside in my wheelchair. Feel the vitamin d in your face for a moment, breathe the fresh air. Itās just an important note to change your surroundings and not fall victim to your illness.
My daily management road map:
Youāre going to see a trend here, the main goal for management is to manage your stress, your mood, your mental well being, your bodyās inflammation levels, physical activityā¦ but overall, the mind plays a major role in pain management strategies. Let me show you:
1. Nutrition: If your condition has any link to food triggers or intolerance, get to know them. Study them inside and out and start eliminating. Donāt wait, Iām telling you! I wish I had done this sooner. Start writing down what you eat and how you felt afterwards. I knew with pheo I couldnāt have foods high in tyramine, but I didnāt really understand the impact. I knew with MCAS I couldnāt have foods high in histamine. If youāre unsure of your condition, an elimination diet could be helpful. Then once you reintroduce the foods one by one, you will see what you react to.
Understanding the role of nutrition is probablyā¦ one of the things that impacted my overall health the most.
Weight related pain caused me extreme joint pain, weakness, skin sores, inflammation, clothing discomfort. My conditions kept me gaining and incredibly inflamed, swollen, sore. Until we finally figured out what diet worked best. For me and my angry tumors, my broken mast cells, and my AI, the best lifestyle I can follow is: low carb, sugar free, low histamine and low tyramine life.
Anyone can benefit from eliminating processed foods and sugar, but itās a personal choice and can be difficult when trying to manage everything else. Believe me, food is a great source of comfort for us. Hello, doctor CUPCAKES. But when I saw the difference in my pain and even my mood? I wish I had known sooner
These are foods that HELP lower histamine naturally
If you donāt know where to begin, just stay in the fresh part of the grocery. Whole foods are vegetables, eggs, meats, and anything that isnāt processed or canned. I know this sucks, but eliminating alcohol completely is so important with this disease. Thereās really no good alcohol and it will cause an immediate reaction.
2. We talked about meditation, so if you can, incorporate it into your daily lifestyle. Like I said, start slow, and easy. Open YouTube, type āguided meditationsā and choose one that speaks to your mood at the moment. Anxiety, stress, grounding, chakra balance, pain, overactive mind, sleep, self love, thereās a meditation for just about anything. Tips to incorporate it into your day: wake up and do a quick 5-10 gratitude session. Mid day when taking a nap, choose one thatās a little longer to rest to. Then when you go to bed, put one on for sleep. Thatās 3 right there!
3. Daily mindfulness: because Iām often asked what my daily habits are and what is self healingā¦ I use an app called aura, it curates coaching sessions, CBT therapy, breath work exercises, meditations, all specific to your needs. Itās a quick and beginner way to learn how to connect with yourself.
Try exploring some self healing books, some topics I recommend are: PTSD recovery, gratitude practice, mindset, anxiety control, and self care. If youād like me to share my reading list let me know in the comments and I will dedicate a post to it.
If youāre new to practicing gratitude, order a 6-10$ gratitude journal on Amazon. This would be a good place to start. Acknowledging what weāre grateful for helps dig us out of a rut, it improves our way of thinking, and it allows us to see the good even when things are very bad. Law of attraction is real yāall!
If youāre asking yourselfā¦ what does this all have to do with pain? Youāre not wrong for asking, most people connect pain relief with traditional practices and physical actions. But for management itās important to be managing your mindset, mood, outlook, and coping strategies. Itās all linked in one way or another, but I canāt do more than offer you the guidance and assurance that it works for me. Itās up to you to make the decision to include what works for you.
Another way to practice mindfulness is to listen to music, get in a habit of putting on some headphones when doing any task. Listen to whatever speaks to your mood, anything to boost your happy hormones, am I right?!
4. Movement: okay this is a big one. Itās also hard when youāre unable to move much at all. Iāve been there as well. But movement is important for circulation, for inflammation, and pain relief!
Some things you can do if youāre sedentary: physio, physio, physio.
Think of when you just get surgery, the first thing they have you do is walk and sit. Think of it like that.
You can do physio in bed, you can do physio from a chair, and it doesnāt always have to be formal. I did my own physio for months with exercise sheets provided to me by the hospital. Ask your physician for some physio exercises, or look for your own and ask if itās okay for you.
I also used to lift one pound weights in bed, just to move my arms around and not completely lose my muscle mass. We would do leg exercises while I was laying down, and I began slowly walking more and more.
Laughing, smiling, and bed dancing helps too.
If youāre moderate, you can incorporate movement by walking. What I like to do is give myself a daily steps goal, no I am not running a marathon so I wonāt achieve 10,000 daily steps like most people, but I cried the day I hit 1000. Some days I would only get to 68 steps, so even if you increase that goal to 100, it ALL COUNTS! Now sometimes I can even get to 5000!
YouTube has a ton of free light impact workouts, physio routines, and light strength training. I love body by Amy, and I also really enjoy beach body on demand, they always include a modified version which I appreciate. I always do the super modified version!
If Iām walking – Iām dancing. I may look ridiculous, and I love it! I dance in the kitchen, I dance brushing my teeth, I dance doing my skincare. Any way to get some movement in and my blood flowing! Also, being silly helps you smile and helps others around you smile. And happy hormones offset angry hormones, well thatās what I tell myself anyway.
This may sound taboo for some but ā¦ sex! Sex is not only movement, but itās a way for the brain to create natural endorphins. Making your body less stressed, happier, and reduces pain. Cool, right?! And remember, you donāt always need a partner for sex! Hint hint. Iāll leave you with that thought. In all seriousness, I know when weāre feeling blah and in pain the last thing you want to do is have sex. Sex can be painful for a lot of us, but it is good to keep pleasure in mind because itās a natural way of creating pain relief and improved mood. Swearsies!
Good old walking, but make it enjoyable. Go somewhere nice, go to the water, the beach, the woods. Switch it up, let it be good for the mind and the body at the same time.
Last but not least, I try as much as I can to incorporate movement by doing everyday house tasks. Iām not able to do a lot, but unloading the dishwasher or preparing a meal can really change the way you feel about yourself. It makes me feel accomplished and it reduces my stress levels. And if you dance while youāre doing it, itās a double movement bonus!
5. Sleep: we talked about sleep, but we have to make it a habit in order for it to be helpful and restorative. We donāt just want to pass out from a flare or when weāre delirious. (This was me for many years) once I got the proper treatment for all of my illnesses, my sleep improved. The night terrors went away, and the adrenaline panic jumps stopped.
Some things we can do to improve our sleep habits areā¦
-Clean sheets and comfortable bedding (you canāt beat that āhotelā feelingā!) make every day like youāre on vacation in your own home
-Going to bed 1 hour earlier per night. (I have a sleep alarm on my phone that tells me when to wind down)
-meditate to go to sleep, or listen to a sleep story, or even just put on some calming sounds, I promise it works!
-if you experience sleep apnea or breathing issues, itās important to participate in a sleep study and be treated
-zero gravity position. Yes! You can sleep this way. Itās not just for flares. Having a slight elevation opens your air ways, increases circulation, and takes pressure points off your back. It also helps with acid reflux sufferers. All of which wake us up frequently. Try it, thank me later!
Beside me you will see my adjustable remote, my headphones, my emergency pill kit, and my gratitude journal. Proof I practice what I preach!
Please keep in mind that sleep includes rest, so although we will be meditating daily, and doing mindful practicesā¦ itās not sleeping. Our bodies need A LOT of rest, my nap time is 3pm sharp! Donāt ever feel guilt for sleeping, for resting, but I recommend really resting and not just watching tv or scrolling on your phone. Our bodies need time to restore, and yes nightly sleep is vital for this. But so is daily rest!
Especially if youāre feeling down or a depression creeping in, your body may require more resting time than normal. You will know when, just listen to the cues your body gives you.
6. Daily tracking: get used to writing things down. Download a diary app (orange diary, or diarium) or get yourself a notebook. The more you write down your symptoms, your triggers, your moods, your patterns, your activities, the more you will see whatās helping or hurting. Itās also helpful for your medical team and YOU! Think back to your last appt, Were you struggling to describe the type of pain when you were reliving it to the doctor? This is why tracking it is important, in real time. It gets to be a habit and it can be what literally saves your life.
7. What brings you joy? You guys, I canāt stress this question enough, I saved it for last for a reason. Not because itās the least important, but because itās the MOST important. Living with life altering illnesses can be all encompassing, most of us only go out when we see our doctors. Or for treatment, and if weāre really lucky, the grocery store. So I canāt stress this enough, what do you LOVE doing? What makes you happy?
I understand you may not be able to zip line or bunjee jump, but thereās always a way to adapt to your previous passions. And also find new purpose! We donāt lose who we are because we become sick.
Remember when I said my husband taught me itās possible to do the things you enjoy when youāre sick? Well, itās sometimes difficult, and comes with extra planning and helpā¦ but itās do-able.
Iāve also found that the simplicity in life has brought me great joy compared to before, I can appreciate just about any moment or see something beautiful.
Itās all of the above daily healing practices thatās helped me with this. But we all hold the ability to see things in this way.
However we HAVE to do things that bring us happiness, itās what gets us from one day to the next, and itās what helps us release our minds temporarily from the pain.
Self care is a huge part of my happiness, all of the above is self care. Self care is dedicating time to YOU and your healing. So I am prescribing a big fat dose of SELF CARE to you! Thatās why I share so much of my routines, my love for taking care of myself, because it brings me joy. And guess what? When weāre happy, weāre often experiencing a momentary release from the pain!
I personally love this, sharing. I love staying fabulous, and I love helping others. Thatās what brings me joy.
I also love unicorns, Starbucks, writing, SHOPPING, Christmas, birthdays, chalet getaways, sunsets, selfies, massages, movie nights with friends, cooking, pedicures, manicures, skincare, makeup, my husbandās smirk, his smile, my dogs, pink things, soft blankets, my bed, fresh flowers, things that sparkle, planners, journals, writing lists, being organized, and ā¦ well, just about anything else. Not in that particular order
Iām not hard to please. My point is, think of what makes you happy. Do at least one thing per day that gives you that feeling.
So thatās all folks, thatās my pain relief guide and management plan. You have aced the course! Now you just have to live it. I bet you werenāt expecting what you just read, but living it is the best part!
I always say the best feeling in the world is having something to look forward to. Well I hope Iāve created that feeling for you, planning all the ways you will incorporate these into your life to successfully manage pain!
Okay this may sound weird, but in a strange and funny wayā¦ Iāve come to realize that preparing for an appointment is kind of like getting ready for a date.
A bad doctorās appointment is like a bad date, you get all ready, you prepare what youāre going to say and how youād like to appear. You quietly whisper to yourself āI think this is itā Only for it last all of 2 minutes and be left unsatisfied and sometimes confused š
Okay, now that Iāve gotten your attention: letās get you in charge of your next date. Sorry, your next appointment!
Weāve all been there, preparing for weeks for something that we feel could be life changing. We show up, we wait, and finally your name is called. Or perhaps itās a phone appointment so your phone finally rings. You have a mix of nerves and excitement that youāre finally going to get answersā¦
The doctor quickly skims through your results, does the standard checklist of what he/she sets out to do with each patient, it abruptly finishes with āokay so everything looks great here! Any questionsā
āUhhh.. ugh.. uhhhhhā¦ā
āOkay then! No questions. Well have a great day!ā
āWhat just happened?!ā
Youāre left sitting there confused, upset, discouraged, and often blaming yourself for not speaking up, not having been able to voice your concerns or ask your questions you spent weeks preparing.
Iām going to share with you ALL of my best tips and tricks to make your appointment as efficient as possible. Giving you the confidence to take charge of your next rendezvous!
Before I dive in, Before YOU even begin to prepare for the appointment. I need you to ask yourself the following questionā¦ this will set the tone for the entire appointment
āWhat do I want to get out of this appointment?ā
Seems simple enough, right? Notalways. Sometimes you donāt actually know, maybe youāre trying to get a diagnosis, maybe youāre trying to improve current symptoms, perhaps youāre just doing a follow-up. But until you know exactly what youāre looking to get out of that particular appointment, you canāt know how to prepare. We need a clear goal, and a game plan.
So once youāve answered that question, write it down. Write down your goal, and focus on it.
Next, Iāve personally prepared for many many appointmentsā¦ OVER prepared, only to be thrown a curve ball I wasnāt prepared for.
So before I share my tips, know this: there will ALWAYS be surprises in life! We canāt be prepared for everything. I will howeverinclude tips for the unexpected.
So you have your goal in mind, now youāre going to envision how the appointment might go. Iāll give you an example. My husband just had an appointment today, heās quite nervous when it comes to his own health. He canāt communicate as well when heās nervous, like anyone. He was awaiting test results. So I began by asking him what he wanted to get out of this appointment, and then I told him to consider the options: Your results will either show something, or show nothing.
ā¢If they show something, what will you want to ask in that moment?
ā¢If they show nothing, what would you like that doctor to do for you to help you with your current symptoms?
Had we not prepared for circumstance A and B, we wouldnāt have been prepared to ask for further testing, or perhaps a referral to a specialist regarding the symptoms.
Often we will be expecting that one appointment to give us all the answers weāre looking for (wouldnāt that be lovely?) but itās not always the case. So weāre going to prepare ourselves for all outcomes, and learn how to ASK for what we need.
With all that being said, letās begin!
Hereās your roadmap:
-To avoid a quick encounter: when scheduling the appointment, ask for extra time to discuss your concerns.
-Prepare your medical resume. I show you how to do that here. I know, sounds intense. But itās helpful if you are meeting a doctor for the first time. Itās a basic overview that you can hand to the doctor when going over your medication list, allergies, known medical conditions, recent testing, etc. I bring mine everywhere with me. Theyāre going to ask all of these questions, so rather than using your mental energy on these menial questions, letās save our strength for the important stuff! Itās also saved my life on multiple occasions. Just make sure to keep it updated!
-List of current symptoms. Okay, this can be tricky. If you have a lot of symptoms, we can sometimes uncomfortable sharing all of them. Just try to keep it relevant and in order of importance. I try to focus on whatās new and debilitating. If the doctor finds it relevant to their diagnosis, they will ask further questions and uncover what may be helpful to them. Unless asked, I wonāt explain every symptom Iāve ever experienced with my multiple health issues.
-List of questions. Going back to the first question I asked you, tailor your questions to your goal. Remember though, prepare questions for the different outcomes. Plan A and B.
-Tests & Treatments: If your goal is to get a diagnosis, you may consider researching beforehand what tests are needed. (This isnāt always necessary, but it doesnāt hurt) That way you can ask for the tests you want, and the doctor can add whatever they think is necessary. This may sound unusual, but itās not. This is self advocacy 101. I canāt tell you how many times Iāve been the one to request or modify my tests or treatment plans. Iām so used to it now, itās just normal to me! š
-If you have research youād like to bring to your appointment, if possible, I like to send it in advance. That way the doctor has the opportunity to review it before our appointment. If this isnāt possible, make it clear, potentially highlight the portion that supports your point.
-Practical info: bring someone with you! Itās so important to have a second set of ears in the room. You will be overwhelmed and your mind will often be focused on the next question youād like to ask rather than fully listening to the doctor. So having that support there with you will help guide the appointment. As well as help you fill in the blanks after. If you absolutely cannot have someone come with you, record the appointment on your phone for later review.
-Donāt be shy to take notes during the appointment, itās important for you to leave feeling informed. You want to avoid confusion, or not feeling heard. It will help with further research and self advocacy in preparation for the next appointment!
-Always allow yourself 30 seconds to respond. Take pause, and if youāre unable to properly respond in that momentā¦ ask for a follow up appointment. You can also request a way to get in contact, via email.
āMay I have a way of getting in contact once I absorb this information? I may have questions and may need to get in touch. Is it better to contact your email directly, or go through your office reception?ā
This will give you the time to consult a partner, a friend, a support group, or even just do your own research before jumping to a response. Inevitably, you will probably have more questions after youāve absorbed the new information.
Iāll give you an example of something that requires follow up: when youāre given a new medication. I like to take the time to find out if itās safe for me to take with my rare conditions. It happens more than I care to admit that itās contraindicated, and I decide not to take it and discuss alternative options.
This is also common for me with scan results, when something completely new and unexpected is discovered.
This is a overview for how to be as prepared as you can for your appointment, but keep in mindā¦ different circumstances can call for more extreme measures.
These circumstances can include:
Going undiagnosed for long periods of time can create discouragement, hopelessness, frustration.
Not feeling heard by your doctor despite all of your preparations, or being told itās āall in your headā, āyouāre fineā, āyouāre just anxiousā
I can give you the road map of how to be prepared, but itās only helpful if both parties are willing to cooperate, respect one another, and communicate well. If you donāt find youāre making progress even after doing all of the aboveā¦
It may be time to consider getting a second opinion š¤
Remember, you are in control of your health. You are the one whoās needing answers. No one will fight harder for you than yourself. Donāt be shy to ask, to request, to question, to challenge.
I hope this roadmap gives you the confidence you need to look forward to your next appointment!
I find the more prepared I am, the less scanxiety I have, the more calm I am approaching the appt, and I feel more in control over my emotions and feel confident in my purpose. I hope you will too!
Leave me a comment of how it goes, I love hearing from you
Stay fabulous my friends! š¦š¤
PHEO VS FABULOUS
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Someone recently asked me how I deal with the anger that comes with being dismissed for so long with rare disease.
So you just got your diagnosis. Itās hard to know how to feel, right? Thankful that you have answers? Angry that countless times you were told it was in your head? That you couldnāt POSSIBLY have that, only to have EXACTLY that..
Pheochromocytoma/paraganglioma are considered a very rare disease. The diagnostic process is a bit different for rare disease patients, and it comes with a different set of emotions when the diagnosis is finally delivered.
Iām going to talk a little bit about how I personally cope with the emotions that come from diagnosis, and what I do with the anger that comes along with it.
Of course no one wants to be sick, but with the untreated symptoms wreaking havoc on your body… honestly, by that time we are often praying for a diagnosis. Without a diagnosis, thereās no opportunity to heal, to take control back. To do something! Itās a strange dynamic, praying to be told youāre sick. Then the moment itās confirmed.. we will give anything to be told weāre āfineā again.
My first diagnosis came as a complete shock, I was 19, Iād understandably never heard of pheochromocytoma before. I never actually thought I had a 1 in a million tumor, not once did that run through my mind. I just thought I was just having sporadic attacks that made me feel like I was going to die every day. I was also relieved. I was relieved that I didnāt have to argue anymore, to prove myself to anyone. I was finally going to be able to take control over my body, and get treated. Or so I thought…
My second diagnosis was different, itād been 4 years since my first Pheo, and Iād never been symptom free. I still dealt with the daily attacks from the adrenaline, and was being told that I was fine all over again. It was like I was stuck in a time warp that would repeat itself every day for years. I was continuously being convinced that I was ājustā anxious, that my blood pressure machine was wrong, my blood sugar is probably just low, etc. I heard it all. I still hear these things every day from people around the world.
My second diagnosis was a different experience, because I knew I had the disease, I knew exactly what it was, I just needed the proof. And then by the time I got proof, it was considered terminal. I was now terminally ill at 24 years old. Tough pill to swallow. How am I supposed to feel this time?
Thereās no right or wrong feeling. The first time- I felt shock and then the fear of uncertainty quickly set in.
What will my future look like? Will I be able to go back to work? Will I have a normal love life? Will I always be in pain? Am I going to constantly have to be worried about it coming back? Am I going to be treated differently? Do I want to be treated differently? Am I different?
The second time- all I felt was numb, and then anger set in. I was so angry. My husband was angry. We were outraged that this could be able to happen, only… Iād find out later that it happens more than I think
I think I can confidently say I hear at least 1 person per DAY that is going through this. With this specific disease. This incredibly rare disease. Itās been six years since my diagnosis, so thatās a lot of people.
Iām generally a very happy, positive, bubbly-type chatty person. I donāt like feeling so negatively for extended periods of time. Holding onto anger. But I also know now that itās important to acknowledge your feelings, so that you can work through them. Toxic positivity isnāt a better solution, being positive and hopeful needs to come from a place of true belief. That way the negative emotions donāt become pent up little balls of anger that burst at any given random time.
I initially channeled my anger into taking my control back, my plan? Getting a new medical team. One that would hear me, and be specialized. I needed a miracle team. I felt like if I could regain a sense of control.. Iād be able to feel different. I didnāt know what emotion I was looking for, I just needed to get past anger. I didnāt realize that Iād be holding onto that toxic feeling for longer than Iād like to admit.
Itās similar to the process of grief, youāre grieving your old life, your sense of normalcy, your old self. The ability to do mundane tasks, to relate to others in your circle, in your age group, the feeling of not knowing the importance and impact of living. Itās a hard dynamic for me because I was always so young, and I felt cheated out of a lot of opportunities I KNEW I would be amazing at. We all have things to grieve, it needs to be done.
So letās talk more about how I regained that control. 48 hours after my diagnosis, I had arranged to see a new specialist, a whole new team. I knew I needed the best, I was 24 and given a poor prognosis. Honestly? I was dying, and they werenāt shy about telling me so. You donāt mess around when it comes to your health, you do anything and everything to change your circumstances.
Securing this new team… it made me feel I had purpose, that I was capable, I felt proud. These emotions are a lot better than anger, am I right?
As I rebuilt trust with these new doctors, fragments of anger would slowly chip away. My fear of not being heard, was slowly diminishing. Time. It takes time.
But what if we donāt have time? Iām terminal, I donāt have time to go through this long process.
Terminal illness isnāt a ticking time clock, it FEELS like that at the beginning… believe me. But I am here to remind you, eventually, with this precious time, your mindset changes.
I decided I needed an outlet for the fear, anger, and acceptance I so badly needed.
Thatās when I started my blog, as a way of channeling these feelings into something good. Something with purpose. I wanted to know my experience meant something. I wanted my diagnosis to be an example for health care practitioners around the world. I wanted my story to be told to EVERY single pheochromocytoma patient.
I wanted my words to live on forever knowing they were making a difference.
Channeling your fear and anger into helping yourself? Thatās a beautiful feeling.
Channeling fear and anger into helping someone else? That is when those fragments become whole again.
But letās back up, Iām not saying everyone has to start a blog. What I am saying is that itās important to get your feelings OUT, write them down somehow. Whether that be a journal, a support group, a diary, or a video blog. Even if you just talk to your camera and never share it! Whatever you feel comfortable with, itās important to let your story be heard. Even if itās just for you, this type of therapeutic action is something that for me, changed my life.
Iāve recommended different types of journals, diaries, gratitude practice, all different sorts of ways of expressing feelings to many people over the years: Iāve never heard someone say it didnāt help them in some small way.
Hereās the hard part: forgiveness. Eventually, down the road… I forgave everyone who I was still holding onto anger towards. This is NOT an easy step, I wonāt sugar coat it. To get to this point, itās a lot of work. Self discovery, trauma healing, mental health practices, growth. However, actually doing it? Meaning it?
Itās so unbelievably freeing.
I know I probably donāt need to remind anyone of this, but forgiveness is not for the other person. Itās for YOU. Itās so that youāre not suffering with those toxic feelings all your life, those fragments that are making you feel broken, while they are out in the world not even giving it a thought. You donāt have to personally forgive them, you do it however you want to. Whatever makes you feel safe.
It can be through prayer, you can again write it down, or just sit alone with yourself and say it aloud. You can role play with someone you trust.
I personally did just that, all of the ways. I had a lot to get off my chest, a lot of years of trauma and forgiveness. I only recently got to this step, after 6 years. Everyoneās time line is different, and thatās okay. Even if you decide, āno, I canāt possibly forgive someone who did this to meā
Thatās okay too.
This is YOUR healing process, and you do with it what you decide. I can only let you know what I did, and what helped me. Made me feel whole again.
Iāve had a lot of people come to me and say āI could never do thatā. Iām with you, Iāve been there. I said that repeatedly in the beginning, then it shifted to āone day, I think Iāll be readyā and then one day, I knew I was
So as you can see, it takes time, no one situation is a one size fits all. However we are all still very similar, and much closer than you think. Thatās what being part of a community is. No matter what type of diagnosis youāre receiving, itās going to change your life. It doesnāt have to change you, the person you are inside.
Your āfabulousā…
āFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!ā ā Pheo VS Fabulous
Iād like to send out a personal acknowledgement to everyone surviving and thriving today. Being national cancer survivors day, I thought this would be the perfect time to share this incredibly important article.
When people hear cancer survivor, they think past tense, someone whoās ābeatā cancer and is alive today.
A survivor is someone whoās been diagnosed, actively in treatment, in remission, and someone like me, whoās a mix of all of the above. Someone whoās surviving every day, never having the time where they can say itās in their past. But they can say –
Pheo vs Fabulous 