Iâm sure youâve heard this phrase, probably hundreds of times. Although it is great advice – what does it actually mean?!
Thereâs 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. Thatâs all true, but what about all the other important aspects of it?
Thereâs a lot more to it than youâd think. Most of us with chronic disease are in tune with whatâs normal and whatâs alarming.
âYour body will let you knowâ
Most people when recalling a diagnosis story, theyâll tell you that golden advice. They will say âyour body will let you know, you just have to listen to itâ 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.
âno one knows your body better than youâ
Not all of us are in tune with our bodies, especially if youâve never had a major health condition. We can brush off a lot of symptoms because weâre unsure of their importance. So Iâm 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 youâre someone who has no pain at all, take note of that too. If youâre a woman, take note of what your breasts feel like, on and off your period. Get to know your smells, if you normally donât have a perspiration smell or do. Do you often get headaches or is it unusual for you? Do your eyes twitch when youâre tired, or all the time? Is your skin very dry? Always or just sometimes? Howâs 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 itâs giving us cues. Or in some cases, alarm bells.
Itâs pretty normal for most people to have the odd symptom here and there, itâs typically nothing to be alarmed about.
When I start to become more alert is when I experience a new symptom that Iâve never had before or havenât had for a very long time. I take note, and I follow it to see if itâs getting worse or becoming consistent.
I break down the urgency by persistent or consistent. If youâre experiencing the same symptom over and over again, thatâs when your body is really trying to tell you something.
If Iâm experiencing a symptom thatâs worsening, thatâs when Iâm 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 didnât seem like such a big deal at the time. I canât 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, itâs not to be ignored.
Iâll 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. Itâs not for nothing, but it can be due to lack of sleep, or stress. If they become more frequent and severe, thatâs when Iâll bring it up at my appointment.
Energy levels and fatigue: if Iâm sleeping well, and doing all the right things – yet Iâm still exhausted⌠Iâll 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 itâs 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 wasnât a big deal. âMy skin is just dry because of winterâ, or âI just have dry skinâ. That may sometimes be the case, yes, but Iâve 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 itâs important to be aware of the trends.
Hair loss: itâs normal to lose a few strands of hair in your brush, and in the shower. However when youâre losing clumps, getting bald spots, and it just falls out without brushing or washing, itâs a cause for concern.
Brain fog: some of us can get a bit foggy when weâre 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. Thatâs 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 itâs related to lack of self care. If itâs really an irrational random reaction, I take note because itâs 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 youâre someone with a lot of different symptoms, itâs best to take note of the ones that stick around or are particularly painful.
Once you have your baseline of whatâs ânormalâ 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, thatâs when you can begin to really listen to what itâs 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 doctorâs appointment here.
Sending love, unicorn magic, and a whole lot of fabulous your way đ¤â¨
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 didnât realize it at the time, but just by asking how to support her loved oneâŚ. 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 doesnât care if youâre healthy, it doesnât care about your age, if you eat well, or train 7 days a week. It happens at random, it isnât 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:
âI made a promise that day that this disease will never take my âfabulousâ which to me is who you are. Itâs your smile, your light, your laugh, beauty, sarcasm, humour, all of the little things that make us who we areâ
âPositively, 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, Iâve never experienced anything ânormalâ as a young adult shouldâ
âAs 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 doesnât 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 someoneâs dogs is hugeâ
âI 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 categoriesâ
âMy best advice is to know that, understand that, and learn how to support them in the different stages of the disease. Even the âafterâ, take the time to know how you can support them emotionally and not just act like itâs behind them. Thatâs often more damaging and hurtful than anything elseâ
âEveryone is different, and we all have different ways we like to be supported. Some donât want to be consider a âfighterâ, youâll notice I used the term thriver throughout this entire interview. Thatâs because I donât want to be fighting with something the rest of my lifeâ
âEmpower them with information, help be their advocate, and most of all⌠remember who they ARE! Help them not let cancer take away their âfabulousââ
You may have heard this term before, maybe even more so recently. Maybe itâs happened to you, itâs not something new, but rather something thatâs being acknowledged and talked about more.
So what is medical gaslighting?
(gaslighting) â the repeated denial of someoneâs reality in an attempt to invalidate or dismiss them â is a form of emotional abuse.
(Medical) gaslighting happens when health-care professionals downplay or blow off symptoms you know youâre feeling and instead try to convince you theyâre caused by something elseâor even that youâre imagining them.
It can sometimes be tricky to identify when itâs happening, sometimes itâs a clear refusal to treat or acknowledge a patientâs symptoms. Sometimes they will acknowledge the symptoms but not want to treat you. However, it doesnât 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 âwell what did they say?â You may not be able to recount a time that they ever outright told you that youâre 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 Iâm 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 doesnât make me less positive or weaken our strength, it empowers us with the ability to move forward with our same positive outlook. I donât 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 couldnât speak, Iâd instantly get emotional, and I would be filled with fear that Iâd be dismissed and get sicker all over again. I wouldnât want to repeat the events so I too would diminish the severity of my symptoms.
Why? before I knew what the term âmedical gaslightingâ 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.
Iâve come a long way from that period, and Iâve used it to learn how to fiercely advocate for myself. To know what type of care Iâm entitled to, and to know my rights when it comes to my health. Sometimes, it just takes ONE situation to make you feel like youâve 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 canât always wait to see your specialist or main doctor. Sometimes, we require emergency careâŚ
My chest is heavy as Iâm writing this, I didnât realize how hard this was going to be. RegardlessâŚ
Iâm 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 âpinched nerveâ 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 wasnât 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 âstoryâ post to say I wasnât 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 didnât 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 itâs a precursor to a neurological event like a stroke or aneurysm) ORâŚ
Go right now while I can still speak clearly for myself and donât 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 canât wait until tomorrow. It often takes multiple people and specialists to convince me to even go.
This was a time where I certainly couldnât know the seriousness of the event myself. I also couldnât risk going to sleep and waiting to see my doctor. My thought was: Iâll never forgive myself if I donât go get checked and it gets worse before tomorrow. Put on your big girl pants and GO, Miranda.
So thatâs what I did, I grabbed my hospital âgo bagâ and all of my supplies needed to speak for myself if Iâm 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 weâve done hundreds of time. Knowing that it can either go extremely well, orâŚ.. the opposite
My local emergency rooms have been experiencing extreme understaffing, and even close the emerg 3-4 times a week. Even before covid, Iâve 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 itâs 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 Iâm the only one there. High five!
Empty emergency room
I was triaged right away, my husband who is my primary caregiver couldnât 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, itâs 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 around⌠for my own safety I have to know that if Iâd 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 Iâm at higher risk of crisis. Since I canât be treated with an epi-pen and thereâs conflicting conditions, itâs 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 itâs 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 âI REALLY donât careâ and stormed out of the room. Leaving my husband and I to stand there and wonder⌠is this how the rest of the night will be?
He instantly reassured me âwell, sheâs just one person! The doctor will be niceâ 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 âso she canât speak for herself? Youâre here because she canât speak on her own? Youâre here to speak on her behalf?â
Not that I need to defend this, but yes. My husband literally is there for when I canât 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. Itâs happened many many times, and itâs 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 itâs 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 itâs happened before, she replied by saying âso then we can do that for you. He doesnât have to be here, if anything changes we are capable of knowing if you canât speak. Or do you think we arenât capable?â
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 havenât even begun to speak about WHY I am there. I didnât feel confident in the surroundings, if you put yourself in my shoes. I have a rare condition thatâs 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 didnât want to argue, so to avoid putting fuel on the fire, I calmly explained that Iâm not questioning their capability. Itâs just if Iâm alone in a room, and it happens within seconds, in the event Iâm unable to speak, logically I canât ask for help. I canât 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 wasnât 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 âcan I tell you why Iâm here?â She threw down her clipboard and replied âI HOPE you know why youâre here, they woke me up in the middle of the night for this!â
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 didnât 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 wonât 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 âso 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?!â(No where did I say I took anything for my headache) âokay so then your headache wasnât bad enough to take a Tylenol AND it went away?â
No, I just donât 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 Iâve had two previous strokes. Which is why we found it of urgency to come in and get this checked. We wouldnât think of coming to the hospital unless itâs an EMERGENCY.
She didnât seem to find it very concerning, instead she asked me âwell why isnât THAT in your chart then, if youâve had a stroke, wouldnât you include it in here?â
I was caught off guard and stunned, so he replied for me. âIt happened before her adrenaline was controlled, before she was diagnosedâ I always include my most current conditions, because a lot has happened and I canât fit them all on one page, I donât 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 âpassed the examâ.
She then began to finally explain that they donât do labs at night, she canât take my blood, she canât do a scan, they donât 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 âemergencyâ. Okay, see ya!
But then âŚ.âeven if I DID do a scan, it wonât tell me anything because youâre not symptomatic anymoreâ
Me: âokay, so⌠if thereâs nothing we can do, do I just go home?â
Doctor: âwell, we can keep you to observe you to see if it happens againâ
Me: âokay and if it doesâŚ, thatâs when we would do tests and a scan?â
Doctor: âwell maybe, MAYBE in the morningâ
Me: âso if it DOES happen again, what would you do?â
Doctor: âwell like I said we will just monitor you and see if it doesâ
(Still unclear as to what that will achieve if theyâre unable to do blood work or imaging)
Doctor: âI mean youâre fine now, your neuro exam is fine, youâre not having the symptoms anymoreâ
Me: âokay so I can just go home then? If thereâs nothing, I can monitor myself and go to a hospital if it changes?â
At this point sheâs said Iâm fine more than once, made me feel Iâm there for nothing, that thereâs nothing they can do at their facility to look further into it. Itâs 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 âokay, well Iâll give you two some time to decide what YOU would like to doâ
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 couldnât 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 changedâŚ
She returned into my room, me fully dressed, standing ready to leave. I thanked her for her time, and proceeded to explain Iâd 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 âconditionâ. She began back peddling and referring to me as a stroke patient. (What?!) she never once mentioned the risk of stroke, even though thatâs 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 wasnât 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 âneurologicalâ event that brought me in can happen again and again until POW! âThe big oneâ 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: âsoâŚ. If I stayed, and you monitor me, and even if the âbig oneâ happens, what would you do?â
Doctor: âwell we would still have to ambulate you to the other hospital that could treat you (an hour away where we live). But I still wouldnât send my stroke patients there! If I had a choice, Iâd send them to the civicâ (by which she means a larger teaching hospital in a different province) but since itâs a different province, I canât do that. So Iâd have to send you to the other hospitalâ
Me: âokay⌠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 bridgeâ
Doctor: âif you stay here we can monitor you and maybe do a scan in the morning, I see youâre allergic to âdyeâ (meaning my life threatening allergy to iodine) but I mean if we need to do a CT under emergency we will âjust do itâ
Me: âummm, you canât just âdo itâ when someone has a life threatening allergy to iodine. This is is one of the reasons Iâm safer at home. If you were to administer iodine even by error, you canât 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 nurseâ
Out of curiosity, I then asked âwhat if I just went to the civic directly now and have them do the scan? Oh right, you said they wouldnât see anything anyway right?â
*crickets* ugh.. ugh⌠well⌠not necessarily
Like, Iâm 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 Iâm walking out the door, thatâs when we get berated about the danger of the situation? Suddenly Iâm a âstroke patientâ? Suddenly everything changes? No. I wonât be roped into this ping pong match. I wonât 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 whoâs doing something wrong.
The aftermathâŚ
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, Iâm 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 thereâs something wrong. I will be safe
As we left the hospital, I again thanked them for their time. I gave grace and understanding that wasnât 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 couldnât 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?
Iâm nice, Iâm calm, Iâm organized, I provide all of the facts, I am a great advocate, I have logic, I donât 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 didnât 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 Iâm going to sleep.
We made a plan as to what we would do in the event of the âwhat ifâsâ. 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 couldnât help but wonder what we would have done had my current condition been more unstable.
This isnât the first time something like this has happened to us, and Iâm certain it wonât 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 itâs most likely not the eye that was larger thatâs 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 itâs normal for eyes to go larger, but itâs 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 itâs 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 arenât comfortable doing
Never feel you donât have the option to get a second opinion
Never feel that you arenât entitled to leave and seek help elsewhere
If itâs unsafe to leave, but you arenât 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 Iâm 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 weâve 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 arenât feeling heard or safe, but canât 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 itâs not just âin my headâ. But if you donât, share within a patient support group. Anywhere that you can get support and be reassured.
Above all, please donât 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 Iâm 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 whatâs 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 Iâll 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, itâs my therapeutic release of letting it go and not giving it power over me. My illness isnât 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, youâre reminded that itâs not your fault. You are deserving and worthy of kindness, patience, and answers.
I havenât 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 didnât 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 earth⌠Iâve had at least 70 scans. Probably more, but I donât keep count.
All types of scans, CT with contrast, CT without contrast, MRI, PET scans, MIBG, Octreotide, bone density scans, Gallium 68, and thatâs 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. Iâm going to give you the best tips I have to be prepared. I find the best way to remove the fear, is to know whatâs 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.
Yesterdayâs scan was an MRI, not my favourite type of scan. But then again, they all have their woes.
A lot of people askâŚ
âwhat is the best type of scan to get for a Pheochromocytoma?â but hereâs the thing⌠it is so specific to your case.
Specific to the timing, is it diagnostic OR prognostic? Is it a follow up after surgery? Is it to see the tumor size or is it to see the tumor activity? Is it to see if youâre eligible for future treatment?
See, thereâs no one size fits all answer.
But since this isnât going to be about all the different types of scans, I will focus on the one I had yesterday: the MRI
Iâm normally a CT girl, not because itâs the best, or because itâs easier – quite the opposite. A CT is normally best for diagnostic imaging, itâs less detailed than an MRI, but gets a good overall view of the body. But Iâm 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 canât 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 âjust an allergyâ 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 Iâm 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. Weâre 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 itâs grown or perhaps shrunk, or if itâs magically disappeared? A girl can dream.
Before I go into explaining what an imaging day looks like, and what to expect DURING an MRI⌠I want to talk about what the before, leading up to it.
In the weeks leading up to my scan, I get a nervous energy that I donât even realize I have. I get very fixated on certain tasks, I get a bit scattered, foggy, yet I canât settle down or rest. I feel the need to always be doing something, planning something, or helping someone else. Itâs 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 whatâs about to come. What this scan will mean to my future. My brain tries and tries to acknowledge both outcomes, but I donât 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 canât 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 letâs be real⌠I heard a lot of bad news. So it became a routine, Iâd 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, itâs 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 canât live a life expecting misery and feel no hope and dream no dreams, because that wouldnât be a very nice existence. So I reframe my mindset to feeling hopeful, manifesting healing, dreaming of whatâs to come, and praying for another miracle.
I figure, no matter what the outcome, I will deal with that when the time comes. I canât 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 âholding onto my fabulous is the one thing I can controlâ and thatâs still true.
Except I realized my âfabulousâ is much more than just lipstick or hair. Itâs who I am, itâs everything that makes me, me!âŚ
So if I had one piece of advice to those of you who are experiencing scanxiety – itâs to acknowledge the possibility of both outcomes, but put your focus on the one you want. Itâs okay to quickly consider the alternative, but donât allow it consume you. Ask for prayer, ask for love, good energy, ask for support. Do what you need to do to feel hopeful.
Set your intention on the good, and in the days leading up to your scan⌠live your life as normal. Go about your day, clean your house, exercise, bake, talk to your friends and family, make homemade pizzas with your kids, shop till you drop. Do whatever makes you feel good, and most of all, normal.
I canât 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. Thatâs 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 Iâm writing about it. Iâm 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 Iâm happy it turned into something different, because I love sharing my heart with you. Letâs be real, we donât come to pheovsfabulous for the science đđ
Letâs 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 youâre going to want to be comfortable. I said comfortable, not boring. Thereâs nothing boring about us, we need to feel cute! Look good feel good, am I right? Ladies AND gents!
Me, Gallium, and my âhospital bagâ
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. Heâs 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 couldnât 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 youâre into.
4. Prep food and drinks for your trip, takeout is hard when youâre following a low tyramine/histamine diet and allergic to nuts. This is a fasting MRI, so youâre going to be hangry. I suggest bringing at least protein bar to devour the moment youâre done the scan. We bring a small cooler and prepare for the day. We didnât used to do this and since we have, itâs made such a difference.
5. Pillows, blanket, neck pillow. Anything thatâs 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 donât 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 donât 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 youâre able to stay awake, as thereâs work to do in there!
The MRI:
So now that weâre 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 canât 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.
âMiranda?â 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 wonât take place until during the scan, so youâll 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, youâre 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 donât 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 thatâs 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 donât 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. Donât wait until the instructions are finished, this was really helpful to me so that we didnât have to repeat the photos.
**Super important tip**
For me, I donât want to feel like Iâm in a tube. So I close my eyes before I go in. I never ever open them, that way I wonât panic. Everyone is different with this, my husband likes to keep his eyes open and then close when heâs ready. It depends if youâre claustrophobic.
Everyone will leave the room, and you will move into the machine. You will begin to hear the prompts almost right away, âtake a deep breath in, now hold your breathâ 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 âguided meditationâ 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 âwarm feelingâ. AKA you will feel like you just peed yourself. Itâs not AS aggressive as the iodine contrast during CT, but you do feel it. This is normal, donât panic! You didnât 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! Youâll feel better quicker.
Although the physical part is over⌠now the mental part is going to take its toll. Leading up to the scan, all that nervous energy you experienced, itâs going to be the opposite now.
You will most likely be drained, exhausted, mentally and physically. Itâs time to rest and recover. I slept a few hours the moment I got home, and Iâll be honest – experienced a lot of pain. Have your heating pad ready, and whatever you do to control your pain levels. As Iâm writing this Iâm 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 itâs 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 itâs time to rest, and do something that really brings you peace. For me, itâs doing exactly this. Writing.
This is my therapy, helping others by sharing my experience.
In this post Iâm going to give you a road map of how I manage with pain with different techniques for severe flare ups AND daily prevention.
Iâve dealt with my fair share of pain, I remember living day to day at a pain scale of 12+ and couldnât 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 couldnât sit because my tailbone hurt so much, and I couldnât 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 Iâm going to share them. But not before I explain WHY đđź
Please always consult your team before making any changes. Integrating new techniques into your daily routine is okay, but removing something without your doctorâs knowledge can be dangerous.
If you didnât already know, we heavily advocated for a diagnosis of mast cell disease this year. There was a lot of symptoms not adding up with my primary illness⌠and a lot of red flags over the years for MCAS.
Part of having mast cell disease is a chemical and medicationintolerance. Your body doesnât 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 thereâs 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, itâs a recipe for disaster.
So what did I do? Well first, we had to evaluate if I was on the right medications⌠or on the wrong ones!
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, letâs 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 Iâm actually thankful for that. I donât think I would have believed how well integrative relief worked if I hadnât tried it myself. I think that this is something every chronic pain sufferer should know either way.
Mind body connection:
Iâm 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, itâs difficult to find relief. Which is why itâs important to understand the link between the mind body connection.
You canât just say âokay Iâll be really positive and believe Iâm not in pain and itâll go away!â No, itâs 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 donât 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 donât get me wrong, Iâm NOT saying medications are bad, Iâm just saying that it takes MORE to truly control pain. Also in my specific circumstances, I didnât have a choice. With the restrictions on the list above, pain management isnât easy.
Pain flare:
Letâs 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 areâŚ. Quality of life improves significantly.
Through panic tears, squeezing headache, nausea and sharp belly jabs, itâs difficult to give the body the oxygen it needs to calm down. So thereâs a few steps to a flare that I follow. Especially if chest pain is involved.
*if youâre alone, you will want to put aside an emergency pain flare setup. So things can be easily grabbed and accessed. If youâre 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 âzero gravityâ position means your legs are higher than your heart.
120° angle bend at the hips puts your body in the âzero stress zoneâ
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 youâre 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 âwell I donât have a personal masseuse!â đ 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 itâs not the yucky skin pain, then go ahead with light massage.
If youâre a caregiver reading this, the power of a light touch is incredible. Even if itâs just to say âIâm hereâ 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. Itâs 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 youâre 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 đ
Heated massage mat
6. Guided Meditation or sound therapy: okay, Iâll 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, youâre much more likely to achieve a state of reduced panic if youâre able to practice mindfulness. And thatâs 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. Iâm sounding all fancy, but literally just search on YouTube âguided meditationsâ. For this specific circumstance, I will link the one that helps me in a pain flare. Itâs short, itâs specific to pain, and itâs 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.
âThe mindful movement: healing chronic pain 20 min guided meditationâ
Sound therapy means that if youâre 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. Hereâs an example of a pain frequency:
Search âpain relief frequencyâ or âstress relief frequencyâ or whatever form youâre looking for. Itâs 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 thatâs my safe place. If Iâm experiencing âthat typeâ 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 Iâm trying to calm my body.
If you havenât already noticed, the primary goal of pain management during a flare is to calm the nerves, the nervous system, the mind, itâs 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 itâs time to sleep ⌠sleep is the number 1 restorative factor in our overall health and actually helps with daily pain control. If you get a restorative nightâs sleep, your body and cells regenerate and heal. If we reframe our brains and pretend like youâre going to pay 120$ for some special exclusive healing therapy, we might be more motivated to get our moneyâs worth!
So what we just went over was mainly considered pain relief type practices, because theyâre meant to reduce pain NOW. But what Iâve learned Iâm trying to manage my pain? Itâs 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 Iâve explained it, Iâve 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, itâs treating your body like the precious vessel that it is. Itâs self care, itâs nutrition, itâs movement, itâs mindfulness, itâs 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 âget some fresh air and do some yogaâ and youâll feel all better.
I am not minimizing pain nor am I saying itâs a one size fits all, Iâve been exposed to chronic pain all of my life in various forms. Iâve grown up witnessing my father suffer in chronic pain from a work accident. My sister having been hit by a car and in an extended coma when I was 12⌠Iâve seen pain. I am a 30 year old palliative woman, I GET PAIN. I promise I have the life credentials.
But what I am saying is that⌠the thing they donât teach us in the pain clinics or when people are prescribed heavy narcotics, is that our brains play a powerful role in how we feel. The mind body connection is so important, and once understood and used correctly⌠can be life changing.
Iâve 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 wonât cure you, it wonât 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 couldnât leave bed, Iâd get outside in my wheelchair. Feel the vitamin d in your face for a moment, breathe the fresh air. Itâs just an important note to change your surroundings and not fall victim to your illness.
My daily management road map:
Youâre going to see a trend here, the main goal for management is to manage your stress, your mood, your mental well being, your bodyâs inflammation levels, physical activity⌠but overall, the mind plays a major role in pain management strategies. Let me show you:
1. Nutrition: If your condition has any link to food triggers or intolerance, get to know them. Study them inside and out and start eliminating. Donât wait, Iâm 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 couldnât have foods high in tyramine, but I didnât really understand the impact. I knew with MCAS I couldnât have foods high in histamine. If youâre unsure of your condition, an elimination diet could be helpful. Then once you reintroduce the foods one by one, you will see what you react to.
Understanding the role of nutrition is probably⌠one of the things that impacted my overall health the most.
Weight related pain caused me extreme joint pain, weakness, skin sores, inflammation, clothing discomfort. My conditions kept me gaining and incredibly inflamed, swollen, sore. Until we finally figured out what diet worked best. For me and my angry tumors, my broken mast cells, and my AI, the best lifestyle I can follow is: low carb, sugar free, low histamine and low tyramine life.
Anyone can benefit from eliminating processed foods and sugar, but itâs 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 donât know where to begin, just stay in the fresh part of the grocery. Whole foods are vegetables, eggs, meats, and anything that isnât processed or canned. I know this sucks, but eliminating alcohol completely is so important with this disease. Thereâs 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 âguided meditationsâ and choose one that speaks to your mood at the moment. Anxiety, stress, grounding, chakra balance, pain, overactive mind, sleep, self love, thereâs 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 thatâs a little longer to rest to. Then when you go to bed, put one on for sleep. Thatâs 3 right there!
3. Daily mindfulness: because Iâm often asked what my daily habits are and what is self healing⌠I use an app called aura, it curates coaching sessions, CBT therapy, breath work exercises, meditations, all specific to your needs. Itâs 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 youâd like me to share my reading list let me know in the comments and I will dedicate a post to it.
If youâre new to practicing gratitude, order a 6-10$ gratitude journal on Amazon. This would be a good place to start. Acknowledging what weâre 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 yâall!
If youâre asking yourself⌠what does this all have to do with pain? Youâre not wrong for asking, most people connect pain relief with traditional practices and physical actions. But for management itâs important to be managing your mindset, mood, outlook, and coping strategies. Itâs all linked in one way or another, but I canât do more than offer you the guidance and assurance that it works for me. Itâs 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. Itâs also hard when youâre unable to move much at all. Iâve been there as well. But movement is important for circulation, for inflammation, and pain relief!
Some things you can do if youâre 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 doesnât 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 itâs 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 youâre 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 wonât 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 Iâm walking – Iâm 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 thatâs what I tell myself anyway.
This may sound taboo for some but ⌠sex! Sex is not only movement, but itâs a way for the brain to create natural endorphins. Making your body less stressed, happier, and reduces pain. Cool, right?! And remember, you donât always need a partner for sex! Hint hint. Iâll leave you with that thought. In all seriousness, I know when weâre 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 itâs 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. Iâm 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 youâre doing it, itâs 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 donât just want to pass out from a flare or when weâre 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 areâŚ
-Clean sheets and comfortable bedding (you canât beat that âhotelâ feelingâ!) make every day like youâre 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, itâs important to participate in a sleep study and be treated
-zero gravity position. Yes! You can sleep this way. Itâs 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 practices⌠itâs not sleeping. Our bodies need A LOT of rest, my nap time is 3pm sharp! Donât 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 youâre 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 whatâs helping or hurting. Itâs 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 canât stress this question enough, I saved it for last for a reason. Not because itâs the least important, but because itâs 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 weâre really lucky, the grocery store. So I canât 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 thereâs always a way to adapt to your previous passions. And also find new purpose! We donât lose who we are because we become sick.
Remember when I said my husband taught me itâs possible to do the things you enjoy when youâre sick? Well, itâs sometimes difficult, and comes with extra planning and help⌠but itâs do-able.
Iâve 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.
Itâs all of the above daily healing practices thatâs 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, itâs what gets us from one day to the next, and itâs 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! Thatâs why I share so much of my routines, my love for taking care of myself, because it brings me joy. And guess what? When weâre happy, weâre often experiencing a momentary release from the pain!
I personally love this, sharing. I love staying fabulous, and I love helping others. Thatâs 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 husbandâs smirk, his smile, my dogs, pink things, soft blankets, my bed, fresh flowers, things that sparkle, planners, journals, writing lists, being organized, and ⌠well, just about anything else. Not in that particular order
Iâm 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 thatâs all folks, thatâs my pain relief guide and management plan. You have aced the course! Now you just have to live it. I bet you werenât 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 Iâve 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 way⌠Iâve come to realize that preparing for an appointment is kind of like getting ready for a date.
A bad doctorâs appointment is like a bad date, you get all ready, you prepare what youâre going to say and how youâd like to appear. You quietly whisper to yourself âI think this is itâ Only for it last all of 2 minutes and be left unsatisfied and sometimes confused đ
Okay, now that Iâve gotten your attention: letâs get you in charge of your next date. Sorry, your next appointment!
Weâve 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 itâs a phone appointment so your phone finally rings. You have a mix of nerves and excitement that youâre finally going to get answersâŚ
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 âokay so everything looks great here! Any questionsâ
âUhhh.. ugh.. uhhhhhâŚâ
âOkay then! No questions. Well have a great day!â
âWhat just happened?!â
Youâre 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.
Iâm 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 question⌠this will set the tone for the entire appointment
âWhat do I want to get out of this appointment?â
Seems simple enough, right? Notalways. Sometimes you donât actually know, maybe youâre trying to get a diagnosis, maybe youâre trying to improve current symptoms, perhaps youâre just doing a follow-up. But until you know exactly what youâre looking to get out of that particular appointment, you canât know how to prepare. We need a clear goal, and a game plan.
So once youâve answered that question, write it down. Write down your goal, and focus on it.
Next, Iâve personally prepared for many many appointments⌠OVER prepared, only to be thrown a curve ball I wasnât prepared for.
So before I share my tips, know this: there will ALWAYS be surprises in life! We canât be prepared for everything. I will howeverinclude tips for the unexpected.
So you have your goal in mind, now youâre going to envision how the appointment might go. Iâll give you an example. My husband just had an appointment today, heâs quite nervous when it comes to his own health. He canât communicate as well when heâs 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.
â˘If they show something, what will you want to ask in that moment?
â˘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 wouldnât 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 weâre looking for (wouldnât that be lovely?) but itâs not always the case. So weâre going to prepare ourselves for all outcomes, and learn how to ASK for what we need.
With all that being said, letâs begin!
Hereâs 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 itâs helpful if you are meeting a doctor for the first time. Itâs 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. Theyâre going to ask all of these questions, so rather than using your mental energy on these menial questions, letâs save our strength for the important stuff! Itâs 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 whatâs 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 wonât explain every symptom Iâve 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 isnât always necessary, but it doesnât 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 itâs not. This is self advocacy 101. I canât tell you how many times Iâve been the one to request or modify my tests or treatment plans. Iâm so used to it now, itâs just normal to me! đ
-If you have research youâd 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 isnât possible, make it clear, potentially highlight the portion that supports your point.
-Practical info: bring someone with you! Itâs 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 youâd 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.
-Donât be shy to take notes during the appointment, itâs 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 youâre unable to properly respond in that moment⌠ask for a follow up appointment. You can also request a way to get in contact, via email.
âMay 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?â
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 youâve absorbed the new information.
Iâll give you an example of something that requires follow up: when youâre given a new medication. I like to take the time to find out if itâs safe for me to take with my rare conditions. It happens more than I care to admit that itâs 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 mind⌠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 itâs âall in your headâ, âyouâre fineâ, âyouâre just anxiousâ
I can give you the road map of how to be prepared, but itâs only helpful if both parties are willing to cooperate, respect one another, and communicate well. If you donât find youâre making progress even after doing all of the aboveâŚ
It may be time to consider getting a second opinion đ¤
Remember, you are in control of your health. You are the one whoâs needing answers. No one will fight harder for you than yourself. Donât 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! đŚđ¤
PHEO VS FABULOUS
đđźđ¸đ˛
If youâd like to keep up with my day to day, my social information is:
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. Itâs 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 couldnât 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.
Iâm 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, thereâs no opportunity to heal, to take control back. To do something! Itâs a strange dynamic, praying to be told youâre sick. Then the moment itâs confirmed.. we will give anything to be told weâre âfineâ again.
My first diagnosis came as a complete shock, I was 19, Iâd 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 didnât 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, itâd been 4 years since my first Pheo, and Iâd 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 âjustâ 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?
Thereâs 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… Iâd 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. Itâs been six years since my diagnosis, so thatâs a lot of people.
Iâm generally a very happy, positive, bubbly-type chatty person. I donât like feeling so negatively for extended periods of time. Holding onto anger. But I also know now that itâs important to acknowledge your feelings, so that you can work through them. Toxic positivity isnât a better solution, being positive and hopeful needs to come from a place of true belief. That way the negative emotions donât 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.. Iâd be able to feel different. I didnât know what emotion I was looking for, I just needed to get past anger. I didnât realize that Iâd be holding onto that toxic feeling for longer than Iâd like to admit.
Itâs similar to the process of grief, youâre 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. Itâs 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 letâs 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 werenât shy about telling me so. You donât 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 donât have time? Iâm terminal, I donât have time to go through this long process.
Terminal illness isnât 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.
Thatâs 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? Thatâs a beautiful feeling.
Channeling fear and anger into helping someone else? That is when those fragments become whole again.
But letâs back up, Iâm not saying everyone has to start a blog. What I am saying is that itâs 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, itâs important to let your story be heard. Even if itâs just for you, this type of therapeutic action is something that for me, changed my life.
Iâve recommended different types of journals, diaries, gratitude practice, all different sorts of ways of expressing feelings to many people over the years: Iâve never heard someone say it didnât help them in some small way.
Hereâs 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 wonât sugar coat it. To get to this point, itâs a lot of work. Self discovery, trauma healing, mental health practices, growth. However, actually doing it? Meaning it?
Itâs so unbelievably freeing.
I know I probably donât need to remind anyone of this, but forgiveness is not for the other person. Itâs for YOU. Itâs so that youâre 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 donât 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. Everyoneâs time line is different, and thatâs okay. Even if you decide, âno, I canât possibly forgive someone who did this to meâ
Thatâs 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.
Iâve had a lot of people come to me and say âI could never do thatâ. Iâm with you, Iâve been there. I said that repeatedly in the beginning, then it shifted to âone day, I think Iâll be readyâ 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. Thatâs what being part of a community is. No matter what type of diagnosis youâre receiving, itâs going to change your life. It doesnât have to change you, the person you are inside.
Your âfabulousâ…
âFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!â â Pheo VS Fabulous
Iâd 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 whoâs âbeatâ cancer and is alive today.
A survivor is someone whoâs been diagnosed, actively in treatment, in remission, and someone like me, whoâs a mix of all of the above. Someone whoâs surviving every day, never having the time where they can say itâs in their past. But they can say –
âHarmonious self regulation is the bodyâs natural state, stress pulls you into another state, of heightened biological responses that triggers a flow of hormones, increased heart rate, stimulate the hyper-vigilance of the senses, and many other linked reactions. But these are all temporary, they are emergency responses onlyâ.
Letâs talk about this đđť I read this last night in one of my @chopra novels.
It actually hit me pretty hard. Although this is scientifically true, for someone who suffers with my disease, this response is NO longer a emergency response. It can happen anytime. Without warning â ď¸
On a normal day, I agree with that statement. To my core. I practice gratitude, inner self healing, I meditate, I let go of toxic feelings, i detox my life often of stress. So with that said…
Imagine your body being able to cause this stress response to ignite⌠WITHOUT the presence of a threat, or any type of apparent stress đ¤Ż
Pheochromocytoma tumors produce those stress hormones, the very ones heâs talking about.
Igniting the bodyâs natural response state to stress, except⌠Iâm stuck in that state, all the time. My neurologist recently described it as being chased by a wooly mammoth, the fear and stress response ignites (fight or flight) and then followed by saying âbut for you, the chasing never ends. Youâre always being chased, and your body can never restâ
We donât get the option. We donât have that basic human function to decide if we are happy or not đ our body decides for us.
I know some of you may not get this, you may be thinking âyou just need to do more inner work to find your true happinessâ. Itâs a normal response to something people canât possibly understand, which is why Iâm doing my best to explain it.
What Iâm getting at is that this is a physiological time bomb we carry around that decides chemically how weâre going to feel for a certain period of time. Itâs an actual sudden, rapid, release of stress hormones that put your body into a state of fight or flight.
That can manifest differently for some. If someoneâs untreated and undiagnosed, theyâll feel it normally as if theyâre suddenly going to die. Itâs not just an emotional response, itâs a physical reactive state where your blood pressure elevates, your heart rate suddenly increases, and that comes with symptoms like sudden brain squeezing headaches, shaking, intense nausea or vomiting, it truly is a physical assault from your own body.
For most, they have to adapt to it for a few months and then they get surgery. But me, weâre friends for life. Weâre in this till the end, me and Pheo. Pheo and I
Since Iâve done countless treatments, and am well managed with medications, I donât experience that type of physical intensity that often anymore. However, the emotional stress response is very friggin real.
I donât want to complicate this too much, but I also have comorbidities that create the same hormonal imbalance and sudden stress responses. Adrenal insufficiency, and mast cell activation syndrome. Iâm basically a little bomb of chemical reactions đ
So I thought itâd be a good time to just kind of touch on this subject since I donât talk about it very often.
Iâll use yesterday as an example, I rested all day, felt amazing, better than I had in quite some time, was so happy. I felt like my resting efforts were paying off. I had no stress surrounding my body. My husband and I had a much needed movie and rest day, the vibe was just perfect.
Around 10pm⌠it felt like a RAGE I bomb was igniting inside of me. It just hit me like a ton of bricks. I was scraping an avocado and suddenly felt like I was going to throw it at the wall. Get this, I was making avocado brownies. BROWNIES guys. If thereâs ever a time to feel happy and at peace… itâs when making brownies
For those of you reading this that donât have the disease, Imagine your worst PMS outburst youâve ever had, and multiply that 1000x – no warning, no control. Just a massive chemical response. And for men, just imagine your most reactive moment, any cause, and Multiply THAT, but keep in mind you have no control over it.
The panic, the anger, the rage, these are all stress hormones. And they come without permission or cause đ
Thatâs my best way to explain what living with pheochromocytoma feels like, and it only gets messier with comorbidities that create similar stress responses.
Last night, even after ten+ years of living with this disease, I was still surprised at the intensity of what I felt. It made no sense. Especially because it wasnât accompanied by the physical response I normally experience. It was purely emotional. To me, thereâs nothing worse than feeling out of control of my body.
I did everything right, and my body still betrayed me. It also feels like Iâm a broken record when I say âitâs not me, itâs my body! I canât control it!â
It FEELS like a load of BS, even I sometimes challenge whether or not thatâs true and I have the damn disease. So I canât imagine how hard it is for the people who love us that are in the war path when this happens. Thatâs the part I hate the most. Iâd give anything to be able to control myself at least when it comes to the people I love, Iâm sure anyone reading this knows the feeling Iâm talking about. The guilt you feel the moment you snap at your loved one about something that makes no sense. Brownies guys. I had an explosive response to making brownies. If it was just me and the brownies, I could have taken it, itâs when you react badly to your loved one. Itâs wounding in a way I canât quite explain. The heavy guilt that comes with it, especially as you utter the words âI canât control itâ …
Even if they know, they understand, and they love you regardless, it doesnât erase the feeling that I have when this happens. My husband is the most understanding person in my universe, he never takes offence, and he certainly doesnât make it worse. But … that doesnât change MY guilt, rational or not, it still sits heavy in my heart
Iâd do anything to be able to control my feelings, sometimes Iâd prefer the physical response rather than this irrational emotional eruption. Because then itâs just me that has to feel the wrath of my cancer when itâs physical. But then I remind myself, thatâs not true either. Your loved one still very much feels it.
And thatâs the worst part for me.
Pheo VS Fabulous
Whatâs your biggest struggle when it comes to living with this disease?
ËkansÉr/ â disease; causing the body and mind to adapt, overcome, and embrace change.
Quality of Life:
What do these three seemingly simple words mean to you?
Someone who is living with a permanent illness which will impact their âquality of lifeâ will hear this phrase from time to time. For someone like me, who is considered a âpalliative care patientâ (which is a polite way of saying my disease will eventually kill me) this term gets thrown around a lot. But do we ever stop to think about what it truly means? Being 30 and terminally ill, I have to think about often.
I used to just see it as a phrase. I actually used to see many things as just phrases, words put together to fill silences in sterile rooms to allow for some sort of relief from the inevitable uncomfortable points of cancer. That is, until you live them and you are intimate with each word. You get to know what each one will mean to you; you get to appreciate what kind of quality youâd like to live, and start to live it. I am going to share my perception of these words, and hopefully they will not just be words to you either.
Before I do that, let me introduce myself. My name is Miranda, Iâm a 30 year old with a rare form of terminal cancer called pheochromocytoma. Iâve been living with this disease in some way or another since I was about 17-18, and officially diagnosed at 19. After my initial surgery to remove a large âbenignâ tumor, I was misdiagnosed with anxiety for 4 years, which led to my eventual terminal cancer diagnosis.
I vowed two things in that moment: one being that I would do everything in my power to prevent this from happening to someone else by sharing my story and learning how to advocate further for rare diseases. I didnât realize where this vow would take me, eventually filling a large gap for a rare disease that should have never had the opportunity to be terminal. And two, I vowed that cancer would never take my FABULOUS.
I wrote this mission statement when I first started my blog:
âPheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and Iâve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when youâre battling an illness like pheochromocytoma cancer, thatâs when I decided I wouldnât let it take that away from me. Itâs more than just looking a certain way, itâs about BEING fabulous, strong, and positive when you have every reason not to beâ
Youâre probably wondering, WHAT IS pheochromocytoma? Iâll try to keep it as simple as possible. Itâs essentially a tumor or tumor(s) that secrete or produce adrenaline. Adrenaline and noradrenaline are hormones that we actually need to function as the trigger for your bodyâs âfight or flightâ response. These hormones prompt higher blood pressure, a faster heart rate and a boost in other body systems that allow you to react quickly with a burst of energy. *Think, lion attack!* A pheochromocytoma ultimately makes you overdose at any given time on these hormones, without warning, which we pheo people like to call âattacksâ. Think: lion attack… with no lion? Essentially your tumor is attacking you with your own stinkinâ adrenaline! This causes your body to suddenly react with high blood pressure, increased heart rate and palpitations, and a whole lot of other deadly symptoms. I say deadly because if uncontrolled or untreated, these attacks are life threatening. So not only do I have cancer, but I have a cancer that tries to kill me multiple times a day with itâs poison IN my body. Fun, right? I also donât just have one, I have metastatic disease and have anywhere from 30+ at any given time. (This is reduced greatly!)
Being so young and considered terminal, Iâve had to learn a lot about the phrase, âquality of lifeâ. Itâs meant to bring a sense of comfort, a sign that no matter what the cancer is going to take from you, we are going to do our best to keep you comfortable while all of these changes take place, and most importantly, just keep you who you are.
We cannot simply continue to live our pre-cancer, ânormal livesââŚright? Well, I kinda thought I could. I think we all do in some respects, and thatâs normal. The difficulty is realizing where you need to adjust your expectations. I didnât say give up there, did I? Time to ADAPT.
So here comes the hard part, once YOU start to change, no one but you can prepare you for this. The next time you hear âYouâre so strong!â, donât shy away from it. Think about what it means to them, what it means to you, and how you have truly earned it. So, you start changing, and this âquality of lifeâ thing everyone keeps talking about, seems like a very far away ideal at this point.
âHow am I supposed to have any sort of Quality of Life when this disease is doing nothing but take take take?â
âI donât even have a LIFE anymore, how am I supposed to have a âqualityâ one?â
âEverything I am doing is supposed to âprovide me with better quality of lifeâ, but after every procedure Iâm left feeling worse and can do less.â
âHow am I not supposed to lose hope?â
My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly ânormalâ to being completely bed ridden for months and needing a wheelchair the rest of the time. THAT was the most surprising, and still is⌠the uncertainty and element of surprise.
Did I tell you how wonderful it feels to simply be a little more kind to yourself?
Change is constant, and I need to be willing to accept that although my life is very different, itâs mine. The fact that I wake up every day is a beautiful thing. Understanding that even the smallest victories are worth celebrating, simple joys are to be found and appreciated every day, because these âsmallâ and âsimpleâ things⌠probably mean the world to you. I now go through life dreaming that everyone could see it through my eyes. Living with cancer has shown me what a gift life is, the complexity of it all becomes so simple.
Embracing change
Throughout most of my story, Iâve chosen to share personal aspects of my life to help others come to the same realizations and places I have, but hopefully avoid a lot of suffering along the way. Iâve experienced surgeries, clinical trials, treatment after treatment, finding the “best” doctors. Iâve been labelled palliative at 25 years old old, terminal, metastatic, aggressive, all the things you donât want to hear. Iâve been confined to a bed, a wheelchair, and at times lost my sense of independence. I lost my voice, my ability to share, and my hope. I never thought Iâd get through it.
But we did. Because cancer makes you ADAPT and OVERCOME.
I say âweâ because my husband goes through all of this with me, from the very beginning. Since my first diagnosis, heâs been by my side. Heâs my voice when I donât have one, and heâs my biggest supporter when I do. He is my caregiver, my everything. And our loved ones go through this journey just as much as we do.
I want to share with you a glimpse of what my life looked like a few years ago, when I thought I only had a year to live, what led me HERE today.
When they first introduced the idea to set up a bed in my living room to improve my quality of life, I thought, “now!? Iâm only 25 years old, Iâm not putting a hospital bed in my living room, that will never go with my decor!” (priorities, jeezeâŚ).
Remember those simple joys? Small victories? Well THIS was the greatest joy, a godsend, a MASSIVE victory! I could see out a window, have LIFE fluttering around me, I can see my husband cooking in the kitchen, I can see my dogs run around the house, I could go and choose a very pink blanket for my new bed (ha!). I can actually walk to the kitchen and serve myself a drink or snack when Iâm feeling well, I can drift off to sleep right in front of my fireplace.
Thatâs what quality of life is. Those arenât just words, This is MYlife.
You too will be able to adapt to your new changing situation, overcome your new challenges, and embrace the changes as they come. You just have to remember⌠your new life is exactly that, a new life. You must explore the beauty it has to show, the joy it has to give, and the blessings it has to offer. Just remember, thereâs no right or wrong when it comes to your life. As long as youâre the one whoâs smiling at the beginning and end of it!
The most incredible part of this story? Iâm 30 now, and after going through all of that, supposedly having a year to live, Iâm still here sharing, thriving, and learning more every day.
Iâm no longer confined to a bed, I no longer live in constant fear, I have accepted that Iâm living with cancer. THRIVING with terminal cancer. I have continued to adapt and overcome and change my circumstances through hard work and advocacy. My quality of life now is a direct result of the information and research we have put into figuring out how to improve my treatments and symptom management, always taking the chance, and fighting so so so pretty.
I have learned how to forgive but not forget in order to continue to help others with this cancer, help them not only live but hopefully thrive. The best part? I never once lost my fabulous.
Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it! I canât wait to share it with all of you, and hopefully have you share with me. Iâm so grateful to be part of an incredible community of fierce thrivers. I look forward to seeing YOUR light, smile, and beauty! đ¤đđź
Iâm feeling very inspired lately, my urge to make a difference is strong.
I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else.
I know I canât save the world, I know I canât prevent every terminal diagnosis, misdiagnosis, and suffering.
Thatâs not going to stop me from trying.
Thereâs a number of things Iâve learned over the past year or so, my brain is more awake. Iâve come to realize there are so many important aspects of healing, and improving quality of life.
The issue started with the moment I was diagnosed with terminal illness, it was like my life became less important. That my life was no longer going to be about living, but dying.
I donât accept this view, this is why Iâm challenging the way terminal illness is viewed. Even by ourselves.
The purpose of this post was to share some specific points of my treatment and management journey, so that maybe someone whoâs living with metastatic pheochromocytoma or similar, can maybe take something from my experience. As we know, thereâs no cure. Only symptom management.
But as I write, itâs become more powerful than just a bullet point list of things that have helped me.
Treatment isnât a one size fits all, nor can it happen overnight.
Iâve suffered, Iâve triumphed, Iâve lost hope, regained hope, fought for my life, and continue to keep living. Really living. Iâve accepted that Iâll never ring a bell that tells the world âIâm cured!â
So Iâm going to share with you a recap of my treatment journey, and then Iâm going to expand into what Iâve learned about healing and improving my overall quality of life.
Feel free to get lost in the highlighted linked words and read detailed past experiences
Keep reading, it gets good.
October 2014– diagnosed with terminal metastatic pheochromocytoma after being misdiagnosed with anxiety for 4 years
November 2014– changed doctors and formed an entire medical team specializing in rare neuroendocrine tumors
I didnât know why, but I felt that overwhelming urge to share. To document. I wanted my misdiagnosis to have purpose. I wanted to be heard. I wanted it to matter.
April 2015– started my blog, sharing my experience, channeling my anger into helping others.
May 2015- first treatment effort: had a massive surgery to de-bulk the amount of disease
(I had over 50 tumors at this time)
November 2015- started losing my hair, no known reason at the time other than stress on the body, started to see more physical impact of the disease
Exactly one year later after my terminal diagnosis, I received another life changing diagnosis.
My remaining adrenal died. I was now going to be reliant on steroids to live for the remainder of my life. I was now adrenal insufficient.
Atleast this explained the hair loss and not being able to keep my eyes open for more than 30 seconds at a time. Problem solved.
Not quite… but more on that later
January 2016- happy new year! Just kidding, time for my introduction to specialized radiotherapy. This is not radiation, this is direct radioactive poison into your blood stream.
Things would move quickly now, my symptoms were out of control. They needed to intervene, and quickly. But thereâs a lot of prep to do for a serious procedure like this safely.
Within the first 20 days of January:
Bone marrow transplant: This was one of the most uncomfortable things I did, as far as pain. Who knew Iâd have to go through several procedures just to get ONE treatment? Itâs a stem cell transfer where you donate your bone marrow to yourself in case of failure after radiotherapy treatment. Itâs quite genius actually. I highly recommend doing this, because if your marrow fails, you need to find a transplant match. In my case, it was just waiting for me on ice in a special vault. Cool, right?
pharmaceutical blockade: preparing my body for the extreme dose of poison. Trying to get my vitals to a low level so that when my tumors explode adrenaline during treatment, I wonât die.
Complications: my thyroid stopped working. More medication for life. But atleast I wonât keep suffering from all those weird unexplained symptoms, right? Wrong, my adrenal insufficiency would continuously be an issue with all of the stress on my body, I could never get enough cortisol. I was burning it too quickly, my body was too stressed from all of the prep, I hadnât even done the treatment yet.
Well now that Iâm ready for MIBG, itâs time to administer the treatment.
January 20th: 3:30pm-5:30pm I became a medical experiment, a spectacle. One of the first to undergo such a treatment at the hospital for this disease. A scary, and confusing time for everyone involved. You can read about my experience here
All better. Just kidding, I actually felt a lot worse. I was in so much pain, and I couldnât get my attacks under control. The MIBG treatment actually set off my tumors more, so I was suffering greatly. I was praying every day for a moment of reprieve. I thought Iâd never see a good day again. I didnât know what it felt like to be normal anymore. I just knew pain.
March 2016– âI donât know what to do next…â this is not something you want to hear from your highly specialized doctor. But even the best doctors become perplexed when it comes to such a rare disease. Especially when itâs not cooperating. At all. It was just getting worse. It would be a bit of time before Iâd get the official round of data compiled to know whether or not it had worked. Letâs stay hopeful
May 2016- it had kind of made a difference, but the results were âdisappointingâ. Great. Now what do we do? More tests of course.
June 2016– test month. Sooo many tests. So much travel. We are exhausted đ˘
July 2016- it canât get worse? Can it? Until it did. Chemo is being discussed. No no no, chemo is the last option. Thatâs what I was told in the beginning and it never left my mind. âChemo is only something we do when thereâs nothing left, itâs not a very effective option for this type of cancerâ. So why are we doing it now?! Itâs not the end. Iâll keep fighting. I promise! Iâll do anything.
Too bad, itâs time to introduce another team member: an oncologist.
July 27 2016- the oncologist. I actually really liked him, I still do. Heâs an essential part of my team. Every mind is better than one. But I didnât agree with his ideas at the time. I did NOT want to chemo, I did however that day learn about immunotherapy, TK inhibitor therapies, and so much more.
August 2016: new plan. I want PRRT. I heard about it from a support group, yes thatâs right. A potential radiotherapy experimental treatment I was betting my future on, I heard from another thriver. See the importance of sharing? So we pushed heavily for this treatment, but it was still in clinical trial phase, oh boy. Iâd need to meet a lot of requirements, only 50 people were being accepted.. only 4 places in the world were doing it.. ok my odds arenât looking great.
You havenât met doctor cupcakes.
Within 24 hours I was accepted into the testing for the clinical trial. My husband is a miracle worker, or he just really loves me. This is only part 1, a highly specialized scan that can look at the tumors at a cellular level. This was considered the gold standard. I wanted it, I needed it. I was getting it!
Hereâs the thing with the scan, itâs not like a regular CT scan or MRI. These types of scans are specific to neuroendocrine tumors like mine. It wonât pick up a regular cancer. It also requires your tumors to be receptive. Still following me?
In order for your tumors to light up on the scan, a gallium scan is designed to be highly sensitive to somatostatin receptors. If your tumors donât have this, they wonât light up. And you canât get the PRRT treatment.
Lucky for me… my tumors lit up like a Christmas tree.
Accepted!
Isnât it weird you can be excited to see an abundance of tumors on a scan? This disease is weird.
Iâm getting tired, so please read about my PRRT experience here. In one year I did 3 super high doses of radiotherapy, different treatments entirely, and so many tests your head would literally spin.
January 2017- I still needed 2 more rounds of PRRT. It was so hard on me. It seemed like I had every side effect possible. My experience wasnât going as smoothly as others. I kept wondering đ why do I always have it so much worse? Am I weaker? Do I just complain more? No, it canât be. This is too much.
Fast forward âŠ
I had completed the 2 more rounds of PRRT. I had such high hopes. It was getting more difficult to live, to function, stairs were impossible, I was living in the main room of my house, in a hospital bed. My life was very different now.
We sold our home, I moved into my dream condo. No stairs, open concept, cozy, peaceful view, everything I ever wanted to be comfortable and continue to find a way to live with this disease. You have to find ways to adapt. This was ours.
November 2017- I spent my first night on my new condo, I slept beside my husband for the first time in months. Since the bedroom was accessible now.
I received a phone call, unknown caller. I always know thatâs bad news. Itâs the hospital.
âCan no longer participate in the clinical trial…â
âTumors not responding…â
âPalliative care…â
âJust keep her comfortableâ
This is what I remember. Iâm sure there was a lot more to it. But what I took from it, Iâm dying. Iâm being told this is the end of my road over the phone. Thereâs no more hope. I politely asked my husband and my mom to give me some time to myself. I locked myself in my room. This seemed like another moment I should document. I felt I should grieve privately, but my heart was telling me I should share my raw feelings and reaction. I thought of all the other people who had been in this situation, and I felt that urge to share again. It was bigger than me. So I filmed my initial thoughts.
Palliative– I went down a very confusing road, it all seemed to blur together. The only time I got out was to go to hospital appts. I could barely make it to the bathroom alone. My home care team always wanted to talk about âmy wishesâ. My wish is to live, for as long as possible. My wish is to not talk about dying. But thatâs apparently not an appropriate wish when youâre palliative.
Unbelievable things started happening.. I started to realize what it really was like the moment your status changes to âpalliativeâ
Youâre seen differently. You no longer get the same options. Your life becomes about dying. When to die. How to die. Where to die.
It was when I was kicked out of my local hospital for refusing to sign a DNR (do not resuscitate) that I realized… Iâm in trouble. This is no joke. I need to get better, I need to show them! Iâm still here, Iâm not dying, I have so much life in me, please listen!
My husband and I started to feel very overwhelmed and for the first time… unsafe. Unsettled. We no longer felt protected. Nothing made sense. He would keep me alive with breathing machines we bought ourself, to treat my pneumonia at home.
We clung to each other, we held onto our last shreds of hope, we would lay down in my twin sized hospital bed that made its way back into my living room. We would hold each other so damn tight, as if Iâd disappear if he let go, the tears falling on one another, reminding us that Iâm still alive. Iâm still here. You can feel me. My heart is beating against yours, my tears are warm, only he could see it.
Everyone else was giving up on me.
The trauma we went through during this period… itâs indescribable. So much happened. Iâm not going to go into it, you can choose to look further into my blog, but this post isnât for that.
My pain was out of control, despite âkeeping me comfortableâ, home care was unable to get my pain under control. My medications kept increasing, the pain would get worse.
Any time we would call for advise, theyâd say to give more medication. Get me out of pain. The cycle would repeat, and Iâd be in more pain.
What is happening? Is this what dying feels like? Youâre just in a constant state of pain? I thought it was supposed to be comfortable.
Maybe I wasnât ready to die
I will quote myself from a previous blog entry:
âAs my limbs become so weak I can no longer walk around, touch becomes unbearable, my speech is becoming more strained, my brain becoming mush. The pain is excruciating. My doses become even more frequentâ
âSo tired. So so tiredâ
âAs my breath becomes more and more painful, more shallow, harder to gasp for air, my skin begins to heat up so much that it starts to fall off. Why is this happening? It has to be the cancer. Time for more medicationâ
âMiranda is having a lot of breathing troubles, what do I do??â
âSheâs unable to walk or and can barely form a sentence, sheâs passing out ALL the time, canât keep her eyes open! What do I do??â
More medication.
November 2018- if we werenât going to get the proper help locally, it was time to get me to my super doctors. The ones who kept me alive before all of this palliative care nonsense. If my husband had to carry me on his shoulders to the car, he would have. Luckily I had a wheelchair. We drove to Montreal, I was admitted immediately. No one could figure out why I was so damn sick. Why I was in so much pain. How could I be on so much pain controlling medication, but be suffering THIS much? I was a medical mystery, sometimes a zebra is a unicorn.
Every.single.day was a guessing game, whatâs wrong with Miranda?
I will quote myself again from a previous blog post …
âThe one thing I knew so far: every nurse, doctor, and specialist could not believe how much pain medication I was taking. Some didnât even want to administer it. I was getting worried, itâs the one thing that gives me relief, why are they so against it?â
âMy nurse, we will call her Angel, she outright said to Serge that the medication is whatâs causing all of my pain. She said that some people react differently to opioids, and that not everything meant to help you is going to. Sometimes it can be the problem, and you can have a reverse effect. Just like that, mind blownâ
âBut it canât be that. I have cancer, itâs whatâs causing my pain. Iâm dying. They told me. All my doctors told me. Thatâs what everyone has been saying for years now, take more medication to be comfortableâ
I was so angry at Nurse Angel, what did she know? Medication, bullshit
Fast forward two months in the hospital đĽ
It was my medication, kind of. What no one knew at this time was that I had suspected mast cell disease. Even as Iâm writing this I am not officially diagnosed but being actively treated.
Since the very beginning, the unknown sensitivity to treatment, to chemicals, my amplified side effects, my heightened symptoms, the unexplained pain, the inability to breathe, the declining unexplained health… it all makes sense suddenly
My master cells were being attacked by the disease, causing them to be broken. High levels of mast cells mediators were being released into my system, similar to my tumors, bursting chemicals into my system that make you flare up into extreme reactions.
The pain medication was making everything worse, since it was making the mast cell flares worse and more frequent. It was just a vicious cycle that wouldnât end.
Until we fought like hell for answers. Until we demanded that I wouldnât die like this. Until we changed the narrative. We saved my life. You can read about that part here
The funny part? I wouldnât have known about mast cell disease had it not been for another patient/friend/advocate. I was too sick and confused to understand it at the time. So I didnât push for answers.
I accepted that it was the medication causing it, and I moved on.
It would be an incredibly long road of healing, it still is.
Healing – we moved away, we moved to the city that saved me. We wanted to be close to the hospital that saved my life. We wanted to feel safe. So we left our friends and family, took our life savings, and we moved to what I imagined would be my âretirement homeâ. I still thought I was going to die soon, but I was happy to do it in peace. Without pain. With a clear mind.
But thatâs not what happened is it?
I started walking to the elevator, using my legs, my muscles had completely died at this point. So I walked little steps every day. I finally made it to the door of my building. Then outside to the street. Then around the block. Then down to the water.
My body was healing, it was slowly recovering from all of the trauma. I was reconnecting with myself. We were finally able to take a breath.
Remember that moment when I started writing this, when I said I never thought Iâd have a moment of reprieve? Well I did. I finally experienced it that day I made it to the water.
My mind was next, I was healing physically, but now I needed to heal mentally. We both did. We had gone through so much, how do you come back from that?
I was unable to share for quite some time during this period, I lost my ability to share my story.
The minute I got my voice back, I started sharing slowly, cautiously. I didnât know what to say. I didnât understand it myself.
I didnât understand how this could happen to me. How something could go so wrong. How I could be so close to death… but be so alive. I could have died because of a lack of knowledge.
I donât like to blame, itâs not healthy for my mental well being. The lack of knowledge that exists is not a fault of anyone, itâs a flaw in our medical system that exists because of the rareness of this disease. Itâs not fair, but itâs real.
Why do I share? Because itâs going to educate whoever reads this.
Itâs going to push boundaries of the rules we are supposed to follow. We are supposed to be good patients and accept our fate.
Well Iâm reclaiming my power, Iâm slowly every day working on myself mentally and physically.
Iâm doing things that bring me joy, Iâm sharing things that make others aware, Iâm connecting with who Iâve always been, Iâm learning why I started this blog in the first place.
It wasnât a choice, it was my purpose, it was a promise.
I promised I wouldnât let this cancer take my fabulous, âFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!â â
What youâre about to read is the very first statement I made when I started this blog. The blog that changed my life and so many others.
âThis is my very first post, my first time writing a blog, and my first time speaking freely about my personal journey with pheochromocytoma cancerâŚ. and staying fabulous while doing it!
Pheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and Iâve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when youâre battling an illness like pheochromocytoma cancer, thatâs when I decided I wouldnât let it that away from me. Itâs more than just looking a certain way, itâs about BEING fabulous, strong, and positive when you have every reason not to be.
The danger of something being so rare is that it goes undetected, unrecognized, and is one of the most misdiagnosed conditions. Leaving many of us undiagnosed, and looking for answers.
If youâre reading this, you might still be looking for someâŚ
My goal is through sharing my vulnerabilities with all of you, finding the courage to share something so painfully personal, someone else may have less of a challenge in the future of being diagnosed, treated, and living with this disease, #pheochromocytoma â or any other âneuroendocrine cancers. #netcancer #raredisease
The idea is that the more I share, the more information there will be available for a disease where this is so much lacking. Every procedure, every test, every treatment I will suffer through â I will continue to share my experiences so that others donât have to keep grasping for answers like I did.
Although there is so much to cover⌠first off, pheo-chromo-cy-whatta?! We will get there darlings, I just want to sayâŚ
This blog is meant for awareness:
Awareness for a disease that only a handful of people in this massive universe know about, probably only because they were diagnosedâ
Isnât that incredible? I told you, it was my purpose. Before I even knew what was I was talking about, why I was saying it, and what it would mean. I knew.
NOW – Iâm finally in a place where I feel things are improved and better controlled. I have good days, I never thought Iâd say that.
I think the most important aspect is treating comorbidity, if you have other illnesses going on, and theyâre not being treated as effectively or focused on as much as the main cancer, the issue is it exhausts the nervous system and keeps triggering the Pheo episodes. Everything from the adrenals, the thyroid, mast cells, anything that can be impacted, make sure itâs being properly treated. Even my endometriosis finally being diagnosed and treated has helped, because it took so much pain and stress off my body. Pheo is so triggered by stress, so the more stress we can eliminate from our bodies physically, the better quality of life we will have.
I started this blog post wanted to share a bullet point list of what has helped me, my meds, my treatments, but I think my heart needed to share, and my soul needed to be emptied of everything Iâve been holding onto.
I started this entry by saying I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else. So now Iâve shared everything I possibly can to do that. Even after Iâm gone, my story and my information will remain available forever.
I will continue to share, every experience, every new piece of the puzzle, but most of all… Iâll continue to share why I have hope.
We canât heal until we are treated, so hopefully this will help you begin your journey for better treatment. I truly hope you will be able to feel that moment of reprieve I described.
I still have bad days, but more importantly… I have goood days!
I still have attacks almost every day, and mast cell flares, but I live with hope, happiness, faith, love, and I control what I can. I no longer live in fear, I am in control, I decide.
I live with a new mindset, I see clearly, I live purposefully, and I remember who I am.
More importantly, I want to help you do the same. Thatâs my purpose.
The rest is out of my hands, the rest i cope with. The rest I made peace with.
My terminal cancer and I live in peace with one another.
If you had asked me six years ago what I was going to write in 2021 on rare disease day, Iâd have told you I wouldnât be here to share.
Iâd have told you what they told me, I maybe have a year left.
Iâm writing this to explain specifically the importance of rare disease awareness, not just a day, but every day of my life. Iâve dedicated every ounce of energy I have into sharing my journey, the ups, the downs, the discoveries. In hopes that someone would learn something from my experience.
Iâve always been a dreamer, but this was much bigger. Before I even really understood the impact of awareness, I truly believed that if I shared enough… I could make a difference. The type of difference that could prevent someone from hearing the words âitâs too late, itâs now terminalâ. Like we did.
I believed deep in my soul that if I shared enough, I would finally be heard. Someone who needed it would hear me, fate would allow them to gain the knowledge they needed to push for a diagnosis.
I wasnât even considering the fact that my experience could potentially better inform healthcare workers, and trickle down… creating a knowledge that would never be heard unless experienced by people like me living with the disease.
My first pheochromocytoma was missed because of a lack of knowledge about the disease, it wasnât the fact that it was too rare to be considered, it just simply wasnât thought of at all.
My second was different, the knowledge was there, but it was considered too rare to come back. It was overlooked because of the odds. The literature didnât support what I was experiencing, so it couldnât possibly be that.
Four years after my first one, I was finally diagnosed with a recurrence. It was misdiagnosed for too long, it spread all over. Itâs terminal. I was told Iâd have 1-5 years to live max, âbased on the literature availableâ. The literature, the incredibly vague and unreliable literature. So little to reference and gain the knowledge needed to empower the patient or even the doctor.
This is when we realized it would become vital to my outcome for us to learn for ourselves. We had to take control of my situation, we had to look for the most knowledgeable doctor to treat me.
We didnât want to accept my odds. So we started down a new path of self advocacy, learning, and sharing.
I started my blog, documented every treatment, feeling, reaction, change, anything.
I figured, if Iâm going to die, I want to leave behind the gift of information. I wanted to re-write the literature. There was such a gap of information at that time, I wanted to help fill a small part of it.
As I shared, I started to connect with more and more people. I was learning more every day. So I kept sharing what I learned.
This new wealth of information would impact my treatment decisions, my ability to strongly advocate for myself, and be part of all decisions regarding my health.
Thatâs the thing with awareness for rare disease, itâs not just a cute buzz word. Itâs life changing. The information we received from others was what kept me alive. Itâs what allowed me to bring up my own suggestions, and avoid doing things I knew wouldnât work for my situation.
Each new step of my journey, I would share with others, and the cycle would continue. The wealth of information and knowledge keeps growing, and we keep changing outcomes. We keep improving quality of life, and we help healthcare professionals better understand us. Leading to proper care and diagnosis.
Of course I can dream so big that if we become less rare… it can lead to a cure. And yes, it can. One day.
But for right now, Iâm focusing on preventing it from getting to my stage in the first place. Where itâs incurable. If we can share enough, if we can continue to become less rare, it will be diagnosed earlier and able to be treated.
For those of us who are past that stage, like me, becoming less rare means proper treatment protocols, better treatment options, symptom management, improved quality of life, and the knowledge to be treated effectively in emergency situations. I canât tell you how many times Iâve been asked…
âwell what do YOU normally do when this happens?â
The knowledge we share will continue to educate all parties involved, making situations like this happen far less often.
I actually never dreamed of a day where Iâd hear âbecause of your blogâ…..
Thatâs the power of sharing, the impact of awareness.
It shouldnât fall entirely on the patient, but our experiences are how we all continue to learn.
I am still here today because of knowledge, because of awareness. Plain and simple.
Each new mind that hears the word âpheochromocytomaâ, has the ability to share that with someone else, and so on. You can never know how this will impact the person hearing it.
So keep sharing while you can.
I know I will.
The most suffering I ever experienced was not being able to use my voice. Not having the ability to share.
I hope you will help me continue to share my message, my story, my journey, my experience, and my dream.
Pheo VS Fabulous đ¤đŚ
Sending you unicorn kisses, love, and pixie dustâ¨
Pheo vs Fabulous 