I count appointments, small wins, month to month, day by day, because thereās no line we cross or distinguishing number that says weāre ādoneā.
This was originally our 2nd last appt of the year (5 of 6) but on the long ride there – rheumatology called and booked me in on the 20th š
so much for a finish line
But here are some pretty big numbers I was reminded of todayā¦
While crying in disbelief with the nurses that saw me today, hand in hand we reminisced over all those numbers that led me here
Two 10+ hour surgeries
3 minutes flat lined
Over 900days straight of non stop treatments
11 months radio silence – canāt read write speak
12 weeks admitted on the palliative care floor
1 nurse to suspect the medication was the problem
November 2018 – I got my voice back
3 months painful rapid detox that saved my life
NYE 2019 – I wished to celebrate the new year in a gown, in a castle, in the arms of my husband, out of the hospital. Like many others, I got my wish. That was the first of the miracles, we danced the night away with swollen legs, a traumatized body and mind, and a grateful heart.
So much happened from there to here, like the time we sold our house liquidating our life savings and retirement to move me close to the hospital that saved me. Having just been told Iād had a year or less to live and not knowing if that still applied. Being too afraid to ask, life came alive. We figured if I wouldnāt make it to retirementā¦ we would enjoy it while Iām alive to do so. We simulated retirement living at 26 thinking Iād die, so I might as well die fabulously.
Through random Tuesday high tea and pedicures, spontaneous zoo visits, Monday amusement park adventures, spa days, a dream accessible building with a door man and secure feeling, access to all the physio I needed to learn to walk again. Daily swims, walks by the water, in awe and confusion of what would happen. 1 year and a lot of credit card debt later, I even got to swim with dolphins and be proposed to all over again. Life became a dream and a blur – but not in the way Iād been used to. We were just having so much fun not knowing, we embraced the craziness of it all – acting like the rest was nothing but a nightmare. We created our own reality, and in our world – dying wasnāt welcome
It was a fun distraction to just be reckless and not have a care in the world, but we had to face reality.
2019 was an entire year of rebuilding strength, my body and mind. Swimming, rehab, physio, walking, continuous small steps to make sense of something we still didnāt fully understand.
What caused me to almost die?
Yes I have a terminal illness, I have cancer, the tumors are angry adrenaline firing assholes. We get that. But that wasnāt it anymore, we kept being told it didnāt match the symptoms. I knew deep down there was something being missed. It wasnāt the cause of whatever this was
We knew the medication I was being given was shutting my body down, opioids specifically. The very medication I was being given every hour on the hour to try to relieve my pain.
The medication that took my breath away, made my skin peel off my body from the flushing, the medication that instead of relieving pain – caused more.
But why?
First, you canāt take opioid medications with the type of tumors I have – pheochromocytomas are actively secreting tumors. When given these meds, the pain medication creates a similar chemical response in the body. It makes an adrenaline storm
Second, but most importantly – I had an undiagnosed rare condition secondary to the cancer called mast cell activation syndrome or disorder. This explained it all. It put all the final pieces together.
I fought hard and long to figure it all out, with the endless care of my husband, and the guidance of a friend brave enough to speak up to let us know.
The last 2 years Iāve spent eliminating trigger foods from my diet, medications, fragrances, activities, etc. I have implemented numerous routines to heal my nervous system. I am in continuous healing mode, this is why. Iāve had to make peace with the anger, the guilt, the grief. I canāt live in anger that I suffered unnecessarily- I chose to heal.
So I could tell my story from an empowered place
When Iām asked, āwhat did you do different?ā or āwhat was the major contributing factor to your turn around?ā I wish there was one thing I could share to help othersā¦ but we are all different, and itās often not just one thing. Itās a string of events and multiple small efforts that add up to make big impacts.
Iāve done a lot of reflecting, trauma therapy, meditation, inner work, heart work, self growthā¦ and I keep asking āwhat saved meā
I realize now, it doesnāt matter.
I wanted a neatly tied box with a clear answer inside because Iām type A and need to be in control, I have to help others through my pain, it has to make sense. It canāt be for nothing. I canāt let this happen to anyone else.
But whether or not I have the exact answer, Iāve gotten a miracle. Iām here on this earth and my words help others every day. My experience helps others navigate their own much smoother because I have my voice back. My blog will always live as the words I desperately needed to hear when I was suffering. Itās not for nothing, itās so much bigger than I can ever realize.
My eyes are open and I see it every day in the comments, the messages, the questions, the stories of how you were diagnosed because of me. Through your time saved looking for your why, I can accept mine. All the times Iāve heard that ābecause of meā you have answers. āBecause of meā you were able to advocate for yourself and feel empowered, my why is loud and clear. The answers are there, in all of you.
I have and will continue to share what I know on a regular basis. All the info I learn, you learn.
My miracle is our miracle
It doesnāt matter why, what matters is all the days and time and pain that delivered me to this very moment. Walking into the cancer centre today, using my voice to thank those who never gave up on me. Crying and laughing together in disbelief
I came and left holding the hand of the person who fought harder than anyone for me, who didnāt let anyone give up on me or say no, who kept me alive himself with a home breathing machine, doctor cupcakes himself. You were my voice when I didnāt have one, and you kept life ānormalā through all the chaos. You were my miracle all along
As always, I had no idea what would come out of my body when I began writing today. I thought Iād do a brief update and year end health summaryā¦
But for now, all I have to say is this:
I didnāt finish the year with all my questions answered. I still have new mystery symptoms, breast lumps, a thyroid cancer scare, pains and spasms. We still have a ways to go, an urgent mammogram ultrasound and CT to start the year.
If we hadnāt lived through what I just described, Iād be losing my shit having to wait that long.
Today when I filled my oncologist in on the breast lumps found and the urgent mammo request that hasnāt been followed up with – he arranged to have a scan first thing in January.
For now, I feel at peace with everything thatās led me here. I am calm, grateful, and feel in control.
I feel heard, loved, curious, powerful, and excited.
I could be upset about the new year starting with another test, another medical mystery, another scare. But I choose to trust Iāve done all that I can do, embracing the unknown.
I canāt think of a more powerful way to finish the year, stable, and leaning into this new found glory.
It took a while to get here, Thank you for believing and making space for me to heal against all odds. Letās finish the year strong, what do you say we do something really crazy?
Letās just be normal for a while, k? Iām not going anywhere, I promise. We can chill on the helicopters for a bit. Hereās to aā¦normal-ish year
Well, a fabulous normal! šš
Love you all, drop a question, tell your story, join me on Instagram and tiktok. Stay connected and most importantly stay fab
I feel like I have so much to discuss since yesterdayās appointment, so here we go. NET CANCER DAY has really got me thinking a lot about how much responsibility falls on us as the patient. Iāve always known this, and I often discuss how the information I share relies on us (the patients) to advocate for themselves in an unbelievable way
Iāll be giving a bit of a health update, while sharing how I prioritize multiple symptoms and conditions
The difficulty of living with more than one health condition is having to navigate which is most urgent. This can be dangerous and counterintuitive for the overall picture and quality of life for someone with chronic disease.
I went to see my palliative care doctor, who is also my family physician. Those of you who know our past with palliative care has been rocky at best.
Anyway I like her, I trust her, and she was the only one we continued with for my local care.
There was a lot to go over, and so already that can be overwhelming for both of us.
I typically talk about my concerns in order of urgency. I also try not to be rushed and I do make an effort to lead with what Iād like to prioritize.
discussing multiple concernsā¦
Normally doctors appointments begin with going over whatās happened since last time. This ends up taking up the bulk of the time, leaving little room for whatās currently going on. Honestly I had too many new issues of concern to discuss so I quickly dived in, not leaving room for previous updates
First I had to address my breast health, she did a thorough exam and agreed with my self exam findings. She ordered a mammogram and marked it urgent. Good that itāll be quick, bad that itās considered urgent. I requested there be an ultrasound with it due to my age.
I wouldnāt have known to ask for ultrasound with it if not for so many #breastfriends sharing their stories. I always āfeel it on the firstā and that helped me to identify when something felt different.
I had brought up my concern at my last appt with a resident before seeing my specialist. I wasnāt laying down when she did her super quick āexamā and if I had relied on her āthereās nothingā I wouldnāt be having this investigated at all. You can see the importance of self advocacy in ALL medical situations. Following your gut instinct and pushing for answers is essential for your health
Young womenās breast health requires a different approach, and so ultrasound is recommended as a supportive measure. We talked about the possibility of a breast MRI as well, but are starting here. I am used to not reacting before something is actually real or concrete. Still a little scary tho!
With #netcancerday on my mind I informed her of the high rate of NETs that can be in other parts of the body such as the breasts (always an advocate!)
I will be referred to a dermatologist for some issues with the skin also. She suggested the use of antibiotics to try and relieve the recurring skin issue I have under my breast. I declined, as I reserve antibiotic use for EMERGENCY matters.
My medical resume came in handy at this appointment as she asked which medications I cannot take or am allergic to. Sometimes we think we donāt need these resources because itās a doctor we are used to or not a big deal. ALWAYS bring your medical resume. I was able to hand her the sheet of contraindicated meds with mast cell activation disorder. You can find that here
It was feeling like a lot already at this point, but there was still other matters to deal with. We discussed the progress or lack thereof with my painful twitching and spasms. My upcoming MRI for the brain to investigate further and how I didnāt vibe with the movement specialist š but I quickly veered back to the current unresolved issues at hand. Breast, lymph, feet. Like a mantra in my mind, making sure I didnāt forget what Iād come for
I asked about the possibility of lymphedema in my left arm, since itās never been brought up at a single appt for the last several years. She looked at both arms and immediately saw a difference in size. I pointed out how the skin sort of puckers inward and how itās always been very painful to do blood pressure on the left. She agreed with the strong possibility of lymphedema. I asked about the possibility that it can be impacting my abdomen as well since Iād had such an extensive de-bulk surgery. She said sheās never had a patient with it but itās a possibility
Iāll be referred to a local lymphedema clinic.
Last, I brought up my chronic foot pain. I explained that this one really has me worried and I donāt have any idea what it could be in relation to. Things like this are always a bit tricky because we have to ask if itās related to my existing conditions. I havenāt had any luck connecting the dots in the patient community. My endo tried a complex B vitamin to see if that would help, but Iām still having the issue.
First thing I am asked with each concern I address āhave you talked about this with your specialist?ā it happens every single time. Each doctor asks if Iāve talked about it with someone else.
I get frustrated because when Iām at my specialistsā¦ they need to focus on their specialty! So they often ask if I have a family doctor. With complex medical issues and multiple concerns, thereās a lot of ping pong as I like to call it. Which is why I often bring up the most urgent issues to each doctor. I then see whoās willing to help or what their opinion is. It allows me to get multiple opinions and saves everyone time
I do get a bit tired and upset when itās always me that has to find everything. I try to think back to a time the onus didnāt fall on me to find answers, I canāt recall a time that it wasnāt like this.
A lot of it boils down to 2 things, when you are rare and medically complexā¦ we deal with order of urgency. Which means the less urgent matters gets swept aside until thereās time to deal with them. But thereās never time, so you have to eventually make it a priority. PAP tests, womenās health checks, and regular labs for vitamin and hormone deficiencies are often not done.
A lot of the sweeping aside ends up turning into bigger issues later on. It can become the things that impact our quality of life the greatest. Ignoring small issues adds up into big problems. It ends up being what creates other advanced issues due to lack of treatment or care early on.
For example, my endometriosis diagnosis had been put off until last year. It meant not doing regular PAP tests, because I am treated palliatively. I was asked verbatim āwould you really want to knowā¦?ā meaning: do I really want to know if thereās something else wrong?
Iād like the opportunity to deal with whatever is going on with my body. Putting my head in the sand saying āIām guess Iām dying so LALALLALā thatās an unhealthy and incorrect approach to palliative care or ANY care for that matter
By the time I got answers I had been suffering with unimaginable pain for over 10 years. Pain that was always blamed on the cancer. I was diagnosed with advanced stage 4 deep infiltrating endometriosis. It canāt be cured or surgically removed. I have to just live with it and try to manage the spread with hormone therapy AND pay out of pocket for uninsured pelvic floor therapy to manage pain. So you see, these ālesser issuesā can wind up being what impacts your life and pain levels greater than anything else
Quality of life improvement for me means taking care of root cause issues and treating what needs to be treated. We can live long lives with reduced pain
So this is where Iām at currently with just the appointment from yesterday. I wonāt know what my cancer is doing or not doing until later in the year – as those labs take a long time. I will have to get imaging in the new year so we wonāt have an up to date look into that until 2023 for now.
This is why I am prioritizing all these other concerns. While putting a focus on improving my baseline health. I put a constant effort into regulating my nervous system, managing stress levels, and doing daily healing practices of my own
I do what I can with whatās in my control, I realize I am doing a lot at once and itās time to be patient. So I can begin to see the results of all my efforts.
I got upset yesterday seeing that I am rapidly gaining weight with no cause again. This becomes an issue because itās happened many times with no answers as to why. Unexplained weight gain is often hormonal, but that doesnāt narrow it down for me. We know itās because of the excess stress hormones – but In 12 years no one has been able to identify which. Why it happens suddenly when it does, and so Iām determined to do it myself. With the next round of labs I will be able to see which level has increased.
I will also request to have my inflammatory levels checked, insulin and leptin resistance, hormone deficiency, food intolerance, and vitamin deficiencies. Any and all things that can be related to weight gain. I had requested (non specific) labs to be tested with her, but she refused on the basis that we need to have a specific reason we are looking for. Or else they can find issues we werenāt trying to find, which I just think is ridiculous. If you have an incidental finding it should be seen as positive. Itās not as if weāre looking for fun without any cause. So fun, right?!
In the meantime, I am reminding myself I am doing what I can. I am doing my best. I wish that someone had told me sooner in my journey to stop focusing on trying to control the things that are simply uncontrollableā¦
And put focus on what I can
For example: if my body is rapidly changing, creating more resistance by fighting back with restrictive eating and unhealthy movement is dangerous for me.
Instead: learn to love my body in all forms through self compassion and patience. Relieving the pressure and stress this causes until answers come, allowing me to be at peace and letting things just ā¦ be
The lesson I am taking away and am sharing with you is that self advocacy is a powerful tool. It can also be overwhelming, exhausting, and feel like a lot of responsibility.
There are times when we have to loosen our grip a little and let the universe, let god, let our bodies, let be.
We have to put a bit of trust into something other than ourselves. Thatās what hope allows for, faith, and mindful practice. Itās a delicate balance for our own good and emotional well being
I love hearing from you, you can connect with me:
For daily updates follow my Instagram account: pheovsfabulous
āBeing given this gift is a rare insight not many get to have, until itās too late to apply it. I have the pleasure of giving a glimpse to all of you nowā pheo vs fabulous
Being palliatively treated was one of my biggest fears, because it meant I was dying. Everyone was speaking to me about my death, it was the hot topic of my 20s. A lonely place to be in.
If something is terrifying to you, itās because itās foreign. By getting to know our fears better, it will become less so.
My curiosity made my fear of death less foreign. I challenged the purpose of this care, whether it was to die or to help my pain and suffering while LIVING.
If used properly, it can be such a beautiful way of removing suffering allowing you to LIVE fully. I am privileged to have learned this
I realized then by sharing my life and my story as a young seemingly vibrant āfull of lifeā womanā¦ it would make others challenge the ideology that surrounds death also. When someone else is confronted with the same fate, they will see that thereās more to death than just dying. You have to have lived in order to die.
I share my life to bring light to these topics that we see as dark. I share as a reminder to take notice of all the beautiful moments and let it inspire you. The way I hopefully inspired you.
Like everything in life there are stages, palliative care is full of people who are very much alive. like me.
You may be wondering why Iām talking about this. Well because I have this unique lens to offer my point of view. By no means do we have to be happy about dying, but we CAN be at peace with it.
Happiness and sadness have to coexist, happiness is a comparative emotion. Once you feel some level of pain and sadness, you can feel happiness and gratitude. Otherwise youād not know when happiness is, we wouldnāt feel joy. We would feelā¦ neutral, we wouldnāt feel the euphoria of relief and the multitude of emotions.
Light canāt exist without dark, happiness canāt exist without sadness, just like life and death. We canāt live unless we die. We canāt die unless weāve lived.
THAT is what I mean when I say Iām terminal and thriving, staying fabulous, or fighting pretty. I am able to live through pain because itās what has led me to my happiness. Living in peace with my body, illness, even death, has given me this gift to live with the purpose we ALL deserve.
I never ever want anyone to pity me, I want you to feel so empowered and fearless to apply this point of view to all aspects of your life. I have chosen to share my unique lens to comfort, to change, to challenge, to connect.
Even if you feel you canāt relate to what I share, we all have life in common. Know that you donāt have to face death in order to start truly living. We all have fears, we all want happiness, we all live and die.
Being given this gift is a rare insight not many get to have, until itās too late to apply it. I have the pleasure of giving a glimpse to all of you now.
I canāt control how others view the world, happiness, death, or even how you view me. I do however hope that you feel the love in my intention.
In the blink of an eye, my life has changed so many times, for better and for worse. What Iāve shared with you today is the hardest thing Iāve ever had to learn. Yet itās my most profound lesson, and Iām honoured to be here alive to share it with you.
I hope a little piece of what I put into the world finds itās way to you. A mindset tip, a makeup hack, a cute outfit for a hospital day, ways to cope, a tip to advocate, a goofy video, how to fight pretty, or a super profound shift in spiritual awareness.
Whatever it may be, these are all the pieces that make us who we are, I hope it leads you to your own āfabulousā.
āFabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it!ā ā Pheo VS Fabulous
Iām sure youāve heard this phrase, probably hundreds of times. Although it is great advice – what does it actually mean?!
Thereās a lot of different ways this phrase is interpreted, most of us associate it with rest. When your body is sending you cues to slow down or some time for self care. Thatās all true, but what about all the other important aspects of it?
Thereās a lot more to it than youād think. Most of us with chronic disease are in tune with whatās normal and whatās alarming.
āYour body will let you knowā
Most people when recalling a diagnosis story, theyāll tell you that golden advice. They will say āyour body will let you know, you just have to listen to itā so what does that really mean? What are we listening to or looking for? Do we run to the doctor each time we have a funny pain?
Well that depends, first, you need to get to know your body.
āno one knows your body better than youā
Not all of us are in tune with our bodies, especially if youāve never had a major health condition. We can brush off a lot of symptoms because weāre unsure of their importance. So Iām going to give you some tips and explain a bit more of what to be looking for
In order to get to know your body, you have to start listening to it. If you have a normal every day pain level of 2, take note of that. If youāre someone who has no pain at all, take note of that too. If youāre a woman, take note of what your breasts feel like, on and off your period. Get to know your smells, if you normally donāt have a perspiration smell or do. Do you often get headaches or is it unusual for you? Do your eyes twitch when youāre tired, or all the time? Is your skin very dry? Always or just sometimes? Howās your mental state? Are you a very anxious person or very calm? Always tired or full of energy?
These are just random examples, but you get the idea. We have to get a baseline idea of what our bodies normally do in order to know when itās giving us cues. Or in some cases, alarm bells.
Itās pretty normal for most people to have the odd symptom here and there, itās typically nothing to be alarmed about.
When I start to become more alert is when I experience a new symptom that Iāve never had before or havenāt had for a very long time. I take note, and I follow it to see if itās getting worse or becoming consistent.
I break down the urgency by persistent or consistent. If youāre experiencing the same symptom over and over again, thatās when your body is really trying to tell you something.
If Iām experiencing a symptom thatās worsening, thatās when Iām making a trip to the doctor.
Why is it important to listen to your body?
If not you, then who will?
Going back to when people are diagnosed, later when they recount their story, they remember certain cues or things that were off. They recall things their body was doing that perhaps didnāt seem like such a big deal at the time. I canāt tell you when something is urgent, because everyone is different. I can tell you to listen and try to judge with the best of your knowledge.
I can also tell you that if something impairs your daily life or capabilities, itās not to be ignored.
Iāll give you some examples of things I personally take note of and how I deal with them.
Symptoms
If my headaches become more frequent, I start to take note. Itās not for nothing, but it can be due to lack of sleep, or stress. If they become more frequent and severe, thatās when Iāll bring it up at my appointment.
Energy levels and fatigue: if Iām sleeping well, and doing all the right things – yet Iām still exhaustedā¦ Iāll take note of it.
Perspiration: if it changes or has a different smell, I take note of it. Hormones can change the way your body smells, so itās good to know the differences.
Abdominal pain: There can be so many different types of pain, I for one experience pain on a daily basis for numerous reasons. So I take note of the level, the location, and the frequency. Is it linked to an activity? A food? Is it the same pain? How would I label it?
Skin changes: I used to think this wasnāt a big deal. āMy skin is just dry because of winterā, or āI just have dry skinā. That may sometimes be the case, yes, but Iāve also had major skin changes to alert me of my thyroid changing, and my cortisol levels depleting. Many issues in our body lead to a hormone imbalance, so itās important to be aware of the trends.
Hair loss: itās normal to lose a few strands of hair in your brush, and in the shower. However when youāre losing clumps, getting bald spots, and it just falls out without brushing or washing, itās a cause for concern.
Brain fog: some of us can get a bit foggy when weāre overwhelmed or not sleeping enough. However, brain fog is also a major symptom of many illnesses. It can also be caused by medications. For me personally, I take note and try to link it to a specific cause so I can deal with it IF possible.
Bloating: this can be a major issue for some of us, it can be something that needs to modified in your diet. Thatās the first thing I try to take note of by trying to link it to a food intolerance. Next I will make note of the severity, does it happen after eating? Does it happen out of no where? Is it painful? Does anything help it?
Mood changes: first thing I ask myself is if it falls under my normal reaction or trends. I label the feeling, try to link it to something, and if not I ask myself if itās related to lack of self care. If itās really an irrational random reaction, I take note because itās typically linked to something more important.
I could probably go on for a while with the types of symptoms I feel, but you get the picture. First take note of what it is, then try to keep an eye on the trends. Frequency, severity, and description. If youāre someone with a lot of different symptoms, itās best to take note of the ones that stick around or are particularly painful.
Once you have your baseline of whatās ānormalā to you, you can then start listening for the alarm bells and cues.
Remember, often it IS a gentle reminder to take it easy, slow down, get some rest. However the only way to know is to be in tune with your body, thatās when you can begin to really listen to what itās trying to tell you.
When I make note of all of these things, I generally try to make changes in my control to see if anything helps. If nothing changes or it becomes worse, I will talk to my doctor, get some labs done, and see what kind of plan we can come up with based on the results.
You can read how to best prepare for a doctorās appointment here.
Sending love, unicorn magic, and a whole lot of fabulous your way š¤āØ
In this post Iām going to give you a road map of how I manage with pain with different techniques for severe flare ups AND daily prevention.
Iāve dealt with my fair share of pain, I remember living day to day at a pain scale of 12+ and couldnāt quite get it under control. I truly suffered for years and pain was my primary issue.
I remember not being able to stand because my feet were so sore, I couldnāt sit because my tailbone hurt so much, and I couldnāt comfortably lay down because my skin literally hurt to the touch. I was miserable. But there were things that we learned along the way that helped significantly, so Iām going to share them. But not before I explain WHY šš¼
Please always consult your team before making any changes. Integrating new techniques into your daily routine is okay, but removing something without your doctorās knowledge can be dangerous.
If you didnāt already know, we heavily advocated for a diagnosis of mast cell disease this year. There was a lot of symptoms not adding up with my primary illnessā¦ and a lot of red flags over the years for MCAS.
Part of having mast cell disease is a chemical and medicationintolerance. Your body doesnāt like a lot of stuff. So the regular pain management approach that was being used for me at that time, was unknowingly making me worse. Much worse
When you have pheochromocytoma or metastatic disease, pain relief can already be tricky since thereās medications that can make the same hormone expression in our bodies as the tumors. Sometimes making us more symptomatic and in more pain.
If you mix mast cell disease into the equation, itās a recipe for disaster.
So what did I do? Well first, we had to evaluate if I was on the right medicationsā¦ or on the wrong ones!
Emergency reference guide for mast cell patients
This is a quick emergency reference guide of medications to avoid and that are better tolerated in most cases of mast cell disease. This is from the mast cell society.
So once I fully detoxed from the bad medications on the list, and began life saving treatment for MCAS, I could now begin my healing journey. It saved me, I could now begin to manage my pain.
All that being said, letās get to pain management!
With such a restriction of traditional pain management, we had to start learning different forms from of relief. I was kind of forced to do so, and Iām actually thankful for that. I donāt think I would have believed how well integrative relief worked if I hadnāt tried it myself. I think that this is something every chronic pain sufferer should know either way.
Mind body connection:
Iām not going to get too scientific, but I was told when I had my very first surgery that the brain will imprint pain.
If the brain gets used to pain, itās difficult to find relief. Which is why itās important to understand the link between the mind body connection.
You canāt just say āokay Iāll be really positive and believe Iām not in pain and itāll go away!ā No, itās much deeper than that.
The more pain we endure, it can make the brain can experience anxiety and depression. Which makes pain worse.
Which is what led me to managing pain in a way where I donāt just throw a pill at it.
I know, it was hard for me to wrap my mind around this too. We are made to believe that medications are the only way of pain relief. Especially in palliative care. But please donāt get me wrong, Iām NOT saying medications are bad, Iām just saying that it takes MORE to truly control pain. Also in my specific circumstances, I didnāt have a choice. With the restrictions on the list above, pain management isnāt easy.
Pain flare:
Letās talk about that sudden, unexpected, all encompassing type pain that makes you feel panic and pushes your body into overdrive. My list may seem extreme, but I promise the more prepared you areā¦. Quality of life improves significantly.
Through panic tears, squeezing headache, nausea and sharp belly jabs, itās difficult to give the body the oxygen it needs to calm down. So thereās a few steps to a flare that I follow. Especially if chest pain is involved.
*if youāre alone, you will want to put aside an emergency pain flare setup. So things can be easily grabbed and accessed. If youāre with someone, they need to know how to respond and what measures to take. Either way, perhaps print the following information and keep it handy. I will also include a list of supplies at the end.
1. First, get to your safe place. For me, this is my bed. My bed offers me the most relief, and I can adjust to how I need to position myself.
2. Elevate your legs, I have an adjustable base, which allows me to put myself in zero gravity with 1 touch. This has been a life saver for me for many reasons, but not everyone has this. Keep some firm pillows or preferably a wedge nearby to quickly access if your bed is not adjustable. Putting your legs into what they call āzero gravityā position means your legs are higher than your heart.
120Ā° angle bend at the hips puts your body in the āzero stress zoneā
Spinal vertebrae are decompressed and muscles are relaxed
Airway and nasal passages are opened up
Elevated legs reduce stress on the heart
Heart and stomach are slightly below the head and knees
I can literally go on and on about the benefits of zero gravity, which is why I have an adjustable bed. In a flare, it will open your airways, reduce the stress on your heart, and put you into a reduced stress zone for pain relief. This is scientifically proven.
Leg wedge pillow example
3. Once youāre in your safe zone, your legs are elevated, you will begin to feel just a tiny bit more calm. I promise. Reducing the feeling of stress and panic to your body will already alter your pain receptors, allowing your body to be less tense, and begin to think more clearly.
4. Heat and Cold Therapy: In a flare state, most likely you will experience sweating, flushing, and added discomforts. Which brings me to my next point: heat and cold therapy.
Having a cooling band for your head will help relieve the inevitable headache you will experience, and it will also cool your body temperature. Cool therapy also can help with nerve pain. So having more than 1 cooking band is a good idea. You can even use a cold wash cloth. Whatever works for you.
Heat therapy is typically a heating pad, or some sort of heat relief. So again having it ready and easily accessible is important. I always have my heating pad rigged and ready to go inmy bed.Always plugged in! The more prepared you are, the smoother these flares become.
5. Massage: most of you are probably reading this and going āwell I donāt have a personal masseuse!ā š and I get that. I promise, I got you!
IF you do have someone able to gently rub your body to relieve the tension the pain is creating, then do so. Not all types of pain allow us to be touched, but if itās not the yucky skin pain, then go ahead with light massage.
If youāre a caregiver reading this, the power of a light touch is incredible. Even if itās just to say āIām hereā without words. This is dependant on your partner or loved one, but I find it very helpful to have my head rubbed lightly during this event. Itās helpful for the body to go into a relaxed state, loosens the muscles, and can alleviate some of the tremors.
So what do you do if youāre by yourself? Well you guys KNOW how much I love Amazon. (Hehehe)
Introducing the massage mat: it can even be heated! Which eliminates the use of a heating pad. So many of you have asked me if I know about a heating pad that hits all areas of the body, so I did my research, V š
Heated massage mat
6. Guided Meditation or sound therapy: okay, Iāll ask you to keep an open mind here. I know a lot of us hear the word meditate and think something entirely different than what it is. Meditation simply means your mind is focusing on a particular thought. Learning how to meditate is incredibly important because if we circle back to the first step, youāre much more likely to achieve a state of reduced panic if youāre able to practice mindfulness. And thatās what meditation is, practicing mindfulness. I had NO idea how to meditate, and honestly? I like to take the guess work out of it. Which is why I use a guided meditation practice. Iām sounding all fancy, but literally just search on YouTube āguided meditationsā. For this specific circumstance, I will link the one that helps me in a pain flare. Itās short, itās specific to pain, and itās very good at calming me down and putting me to sleep. Sleep is the primary end goal in a flare. I will talk more about the benefits of meditation later.
*Once you are able to achieve this mindfulness, you can use this focusing technique during painful procedures, scans, and any situation where you need to disconnect.
āThe mindful movement: healing chronic pain 20 min guided meditationā
Sound therapy means that if youāre unable to listen to someone speak like in a guided meditation, you can use sound healing instead. It operates on a frequency that can offer different forms of relief for your body. Hereās an example of a pain frequency:
Search āpain relief frequencyā or āstress relief frequencyā or whatever form youāre looking for. Itās like spa music but is used as a healing method.
7. This may seem obvious but keeping your flare up emergencymedications close to you in different parts of the house can make all the difference. I keep a mini medication kit beside my bed since thatās my safe place. If Iām experiencing āthat typeā of headache, or anything flare related that can be calmed with medication treatment, I take it before doing anything else. That way it has time to sink in while Iām trying to calm my body.
If you havenāt already noticed, the primary goal of pain management during a flare is to calm the nerves, the nervous system, the mind, itās all about the calm!
8. At this point we should have achieved a state of exhaustion, the pain should be dying down, but we have nothing left in our tank. So itās time to sleep ā¦ sleep is the number 1 restorative factor in our overall health and actually helps with daily pain control. If you get a restorative nightās sleep, your body and cells regenerate and heal. If we reframe our brains and pretend like youāre going to pay 120$ for some special exclusive healing therapy, we might be more motivated to get our moneyās worth!
So what we just went over was mainly considered pain relief type practices, because theyāre meant to reduce pain NOW. But what Iāve learned Iām trying to manage my pain? Itās a full time job!
Daily healing takes time, dedication, education, it can be expensive, and can seem daunting to do on our own. But the way Iāve explained it, Iāve used a lot of selfhealing methods to try and remove some of that burden.
Pain management is the practice of constant self care and prevention techniques, itās treating your body like the precious vessel that it is. Itās self care, itās nutrition, itās movement, itās mindfulness, itās everything we discussed above and much much more.
If you rolled your eyes at any one of those things, I get it. I really do. I am NOT saying āget some fresh air and do some yogaā and youāll feel all better.
I am not minimizing pain nor am I saying itās a one size fits all, Iāve been exposed to chronic pain all of my life in various forms. Iāve grown up witnessing my father suffer in chronic pain from a work accident. My sister having been hit by a car and in an extended coma when I was 12ā¦ Iāve seen pain. I am a 30 year old palliative woman, I GET PAIN. I promise I have the life credentials.
But what I am saying is thatā¦ the thing they donāt teach us in the pain clinics or when people are prescribed heavy narcotics, is that our brains play a powerful role in how we feel. The mind body connection is so important, and once understood and used correctlyā¦ can be life changing.
Iāve gotten angry at people for telling me to take a walk or get fresh air. Especially when I was physically unable to do those things a lot of the time. It wonāt cure you, it wonāt make it go away, but in combination with other daily habits can really help us toward managing our mental AND physical well being.
My husband showed me that no matter what your circumstances, you have to continue to do the things you love. The things that bring you enjoyment and calm. So hopefully I can be that person for you.
If I couldnāt leave bed, Iād get outside in my wheelchair. Feel the vitamin d in your face for a moment, breathe the fresh air. Itās just an important note to change your surroundings and not fall victim to your illness.
My daily management road map:
Youāre going to see a trend here, the main goal for management is to manage your stress, your mood, your mental well being, your bodyās inflammation levels, physical activityā¦ but overall, the mind plays a major role in pain management strategies. Let me show you:
1. Nutrition: If your condition has any link to food triggers or intolerance, get to know them. Study them inside and out and start eliminating. Donāt wait, Iām telling you! I wish I had done this sooner. Start writing down what you eat and how you felt afterwards. I knew with pheo I couldnāt have foods high in tyramine, but I didnāt really understand the impact. I knew with MCAS I couldnāt have foods high in histamine. If youāre unsure of your condition, an elimination diet could be helpful. Then once you reintroduce the foods one by one, you will see what you react to.
Understanding the role of nutrition is probablyā¦ one of the things that impacted my overall health the most.
Weight related pain caused me extreme joint pain, weakness, skin sores, inflammation, clothing discomfort. My conditions kept me gaining and incredibly inflamed, swollen, sore. Until we finally figured out what diet worked best. For me and my angry tumors, my broken mast cells, and my AI, the best lifestyle I can follow is: low carb, sugar free, low histamine and low tyramine life.
Anyone can benefit from eliminating processed foods and sugar, but itās a personal choice and can be difficult when trying to manage everything else. Believe me, food is a great source of comfort for us. Hello, doctor CUPCAKES. But when I saw the difference in my pain and even my mood? I wish I had known sooner
These are foods that HELP lower histamine naturally
If you donāt know where to begin, just stay in the fresh part of the grocery. Whole foods are vegetables, eggs, meats, and anything that isnāt processed or canned. I know this sucks, but eliminating alcohol completely is so important with this disease. Thereās really no good alcohol and it will cause an immediate reaction.
2. We talked about meditation, so if you can, incorporate it into your daily lifestyle. Like I said, start slow, and easy. Open YouTube, type āguided meditationsā and choose one that speaks to your mood at the moment. Anxiety, stress, grounding, chakra balance, pain, overactive mind, sleep, self love, thereās a meditation for just about anything. Tips to incorporate it into your day: wake up and do a quick 5-10 gratitude session. Mid day when taking a nap, choose one thatās a little longer to rest to. Then when you go to bed, put one on for sleep. Thatās 3 right there!
3. Daily mindfulness: because Iām often asked what my daily habits are and what is self healingā¦ I use an app called aura, it curates coaching sessions, CBT therapy, breath work exercises, meditations, all specific to your needs. Itās a quick and beginner way to learn how to connect with yourself.
Try exploring some self healing books, some topics I recommend are: PTSD recovery, gratitude practice, mindset, anxiety control, and self care. If youād like me to share my reading list let me know in the comments and I will dedicate a post to it.
If youāre new to practicing gratitude, order a 6-10$ gratitude journal on Amazon. This would be a good place to start. Acknowledging what weāre grateful for helps dig us out of a rut, it improves our way of thinking, and it allows us to see the good even when things are very bad. Law of attraction is real yāall!
If youāre asking yourselfā¦ what does this all have to do with pain? Youāre not wrong for asking, most people connect pain relief with traditional practices and physical actions. But for management itās important to be managing your mindset, mood, outlook, and coping strategies. Itās all linked in one way or another, but I canāt do more than offer you the guidance and assurance that it works for me. Itās up to you to make the decision to include what works for you.
Another way to practice mindfulness is to listen to music, get in a habit of putting on some headphones when doing any task. Listen to whatever speaks to your mood, anything to boost your happy hormones, am I right?!
4. Movement: okay this is a big one. Itās also hard when youāre unable to move much at all. Iāve been there as well. But movement is important for circulation, for inflammation, and pain relief!
Some things you can do if youāre sedentary: physio, physio, physio.
Think of when you just get surgery, the first thing they have you do is walk and sit. Think of it like that.
You can do physio in bed, you can do physio from a chair, and it doesnāt always have to be formal. I did my own physio for months with exercise sheets provided to me by the hospital. Ask your physician for some physio exercises, or look for your own and ask if itās okay for you.
I also used to lift one pound weights in bed, just to move my arms around and not completely lose my muscle mass. We would do leg exercises while I was laying down, and I began slowly walking more and more.
Laughing, smiling, and bed dancing helps too.
If youāre moderate, you can incorporate movement by walking. What I like to do is give myself a daily steps goal, no I am not running a marathon so I wonāt achieve 10,000 daily steps like most people, but I cried the day I hit 1000. Some days I would only get to 68 steps, so even if you increase that goal to 100, it ALL COUNTS! Now sometimes I can even get to 5000!
YouTube has a ton of free light impact workouts, physio routines, and light strength training. I love body by Amy, and I also really enjoy beach body on demand, they always include a modified version which I appreciate. I always do the super modified version!
If Iām walking – Iām dancing. I may look ridiculous, and I love it! I dance in the kitchen, I dance brushing my teeth, I dance doing my skincare. Any way to get some movement in and my blood flowing! Also, being silly helps you smile and helps others around you smile. And happy hormones offset angry hormones, well thatās what I tell myself anyway.
This may sound taboo for some but ā¦ sex! Sex is not only movement, but itās a way for the brain to create natural endorphins. Making your body less stressed, happier, and reduces pain. Cool, right?! And remember, you donāt always need a partner for sex! Hint hint. Iāll leave you with that thought. In all seriousness, I know when weāre feeling blah and in pain the last thing you want to do is have sex. Sex can be painful for a lot of us, but it is good to keep pleasure in mind because itās a natural way of creating pain relief and improved mood. Swearsies!
Good old walking, but make it enjoyable. Go somewhere nice, go to the water, the beach, the woods. Switch it up, let it be good for the mind and the body at the same time.
Last but not least, I try as much as I can to incorporate movement by doing everyday house tasks. Iām not able to do a lot, but unloading the dishwasher or preparing a meal can really change the way you feel about yourself. It makes me feel accomplished and it reduces my stress levels. And if you dance while youāre doing it, itās a double movement bonus!
5. Sleep: we talked about sleep, but we have to make it a habit in order for it to be helpful and restorative. We donāt just want to pass out from a flare or when weāre delirious. (This was me for many years) once I got the proper treatment for all of my illnesses, my sleep improved. The night terrors went away, and the adrenaline panic jumps stopped.
Some things we can do to improve our sleep habits areā¦
-Clean sheets and comfortable bedding (you canāt beat that āhotelā feelingā!) make every day like youāre on vacation in your own home
-Going to bed 1 hour earlier per night. (I have a sleep alarm on my phone that tells me when to wind down)
-meditate to go to sleep, or listen to a sleep story, or even just put on some calming sounds, I promise it works!
-if you experience sleep apnea or breathing issues, itās important to participate in a sleep study and be treated
-zero gravity position. Yes! You can sleep this way. Itās not just for flares. Having a slight elevation opens your air ways, increases circulation, and takes pressure points off your back. It also helps with acid reflux sufferers. All of which wake us up frequently. Try it, thank me later!
Beside me you will see my adjustable remote, my headphones, my emergency pill kit, and my gratitude journal. Proof I practice what I preach!
Please keep in mind that sleep includes rest, so although we will be meditating daily, and doing mindful practicesā¦ itās not sleeping. Our bodies need A LOT of rest, my nap time is 3pm sharp! Donāt ever feel guilt for sleeping, for resting, but I recommend really resting and not just watching tv or scrolling on your phone. Our bodies need time to restore, and yes nightly sleep is vital for this. But so is daily rest!
Especially if youāre feeling down or a depression creeping in, your body may require more resting time than normal. You will know when, just listen to the cues your body gives you.
6. Daily tracking: get used to writing things down. Download a diary app (orange diary, or diarium) or get yourself a notebook. The more you write down your symptoms, your triggers, your moods, your patterns, your activities, the more you will see whatās helping or hurting. Itās also helpful for your medical team and YOU! Think back to your last appt, Were you struggling to describe the type of pain when you were reliving it to the doctor? This is why tracking it is important, in real time. It gets to be a habit and it can be what literally saves your life.
7. What brings you joy? You guys, I canāt stress this question enough, I saved it for last for a reason. Not because itās the least important, but because itās the MOST important. Living with life altering illnesses can be all encompassing, most of us only go out when we see our doctors. Or for treatment, and if weāre really lucky, the grocery store. So I canāt stress this enough, what do you LOVE doing? What makes you happy?
I understand you may not be able to zip line or bunjee jump, but thereās always a way to adapt to your previous passions. And also find new purpose! We donāt lose who we are because we become sick.
Remember when I said my husband taught me itās possible to do the things you enjoy when youāre sick? Well, itās sometimes difficult, and comes with extra planning and helpā¦ but itās do-able.
Iāve also found that the simplicity in life has brought me great joy compared to before, I can appreciate just about any moment or see something beautiful.
Itās all of the above daily healing practices thatās helped me with this. But we all hold the ability to see things in this way.
However we HAVE to do things that bring us happiness, itās what gets us from one day to the next, and itās what helps us release our minds temporarily from the pain.
Self care is a huge part of my happiness, all of the above is self care. Self care is dedicating time to YOU and your healing. So I am prescribing a big fat dose of SELF CARE to you! Thatās why I share so much of my routines, my love for taking care of myself, because it brings me joy. And guess what? When weāre happy, weāre often experiencing a momentary release from the pain!
I personally love this, sharing. I love staying fabulous, and I love helping others. Thatās what brings me joy.
I also love unicorns, Starbucks, writing, SHOPPING, Christmas, birthdays, chalet getaways, sunsets, selfies, massages, movie nights with friends, cooking, pedicures, manicures, skincare, makeup, my husbandās smirk, his smile, my dogs, pink things, soft blankets, my bed, fresh flowers, things that sparkle, planners, journals, writing lists, being organized, and ā¦ well, just about anything else. Not in that particular order
Iām not hard to please. My point is, think of what makes you happy. Do at least one thing per day that gives you that feeling.
So thatās all folks, thatās my pain relief guide and management plan. You have aced the course! Now you just have to live it. I bet you werenāt expecting what you just read, but living it is the best part!
I always say the best feeling in the world is having something to look forward to. Well I hope Iāve created that feeling for you, planning all the ways you will incorporate these into your life to successfully manage pain!
Pheo vs Fabulous 