If you had asked me six years ago what I was going to write in 2021 on rare disease day, I’d have told you I wouldn’t be here to share.
I’d have told you what they told me, I maybe have a year left.
I’m writing this to explain specifically the importance of rare disease awareness, not just a day, but every day of my life. I’ve 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.
I’ve 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 “it’s too late, it’s now terminal”. 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 wasn’t 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 wasn’t the fact that it was too rare to be considered, it just simply wasn’t 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 didn’t support what I was experiencing, so it couldn’t 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. It’s terminal. I was told I’d have 1-5 years to live max, ‘based on the literature available’. 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 didn’t 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 I’m 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.
That’s the thing with awareness for rare disease, it’s not just a cute buzz word. It’s life changing. The information we received from others was what kept me alive. It’s what allowed me to bring up my own suggestions, and avoid doing things I knew wouldn’t 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, I’m focusing on preventing it from getting to my stage in the first place. Where it’s 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 can’t tell you how many times I’ve been asked…
“well what do YOU normally do when this happens?”
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 I’d hear “because of your blog”…..
That’s the power of sharing, the impact of awareness.
It shouldn’t 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 “pheochromocytoma”, 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.
35 things we wish you knew about having a rare cancer, chronic disease, or rare illness.
Here’s the thing, before I start… I want you to know that I’ve asked hundreds of patients fighting this disease and others to chime in on what we wish you knew. This post is not entirely from my perspective, but it’s all the things I feel.
It’s important to know that we all don’t fit into one neat little box. We all have our own perspectives and things that bother us and things we wish you knew.
This is my effort to put as many of these together and help as many of our friends, family, and support systems understand where we’re coming from living with this disease.
It’s hard enough to live with cancer, chronic illness, or rare disease, but it’s even harder to not be understood.
We know we’re complicated, but we didn’t ask to be this way.
I sincerely hope that this brings you a level of comfort knowing that there are ways of communicating with your loved ones, if you just take the time to understand. Having a rare disease requires knowledge, patience, and a lot of understanding.
You may not always have the right thing to say, but it’s best to just ask.
So, here goes nothing.
1. I wish you knew that I’m in pain every.single.day, even when I don’t show it. It’s always there. Imagine waking up every single morning and every part of you hurting… with no hope of it going away, and every movement you make, it just gets worse throughout the day.
2. I wish you knew that I hate answering “how I’m doing”. I feel like you don’t want a long winded answer, but that’s often all I’ve got. So I’ll often tell you “I’m fine, or okay” just to answer. I wish you’d ask something specific so that I can be honest.
3. I wish you knew I don’t feel “brave or strong”. I didn’t have a choice to wake up with cancer or any co-morbidities. I’m not brave because I have cancer, I’m not strong because I have cancer, I was forced into this life.
4. I wish you knew I felt uncomfortable when you say I’m an inspiration because I have cancer. If I’ve done something to deserve it, and it’s well intentioned, I appreciate it. Actually, I appreciate it regardless. But I just wish it wasn’t such an automatic response to having cancer. Having cancer doesn’t get to all of a sudden make you not a shitty person if you are one 😂 it doesn’t immediately make you an inspiration. At least, we don’t feel that way.
5. I wish you wouldn’t say you’re sorry when I tell you I have cancer. I don’t know how to respond and it makes me uncomfortable. It’s like we’re forced to say “it’s okay”, but… it’s not okay. Please try and be sensitive to speaking to someone with an illness, it’s uncomfortable for all involved but it doesn’t have to be. You can be sorry, it sucks, but maybe ask us more about our disease, open up a dialogue to understand us better. We appreciate that more than being felt sorry for.
6. I wish you knew that not all pheochromocytoma is cancerous, but even when it’s “benign” it’s just as dangerous and often can turn into cancer. The C word is what scares people, but it should be the P word that frightens you more. Pheochromocytoma is the disease we fight. Benign, malignant, it doesn’t matter. It’s one of the scariest diseases out there.
7. I wish people would understand that just because I had surgery to remove the pheochromocytoma tumor, they often do and will come back. We’re never really “done” or cancer free. If it is cancer, we live with it for life. It’s a terminal illness. Despite all the treatments and surgeries we get, it’s a way of managing the disease, not curing it.
8. I wish people understood how many triggers there are with this disease. My tumors literally hate everything. My skin feels like it’s on fire within 30 seconds of sun exposure. I can’t take a hot shower without having an “attack”. I can’t walk far or fast without provoking an attack. I can’t get too excited. I can’t get stressed. I can’t blow dry my hair without being soaked in sweat. I sometimes can’t do the dishes without provoking an attack. It can be something big like exercising or something small like getting dressed, but it can and will happen without any notice. There are certain foods we can’t eat because it’s a trigger. Loud noises. The list goes on, it may be helpful when we tell you this that you do a bit of research yourself to understand us more and what we go through. Maybe start here.
9. I wish you would look up my disease every once and a while before exhausting me. I’m happy to talk about my disease, I’m happy to explain it, but I don’t want to have to repeat myself 1000 times because you refuse to do the research. If you care, you should want to know more.
10. I wish you understood that my cancer is different than other cancers. These tumors are different than any other tumor. They are adrenaline secreting tumors. I wish you understood what impact adrenaline has on the body. It’s debilitating, it’s dangerous, it’s lethal, and can be deadly. People hear “we produce too much adrenaline” and picture a scene from an action movie. No, it’s not fun. We don’t have superpowers, and it doesn’t give us more strength. It’s the opposite. Read here about what having an attack of adrenaline is like.
11. I wish you understood that even if I look perfectly well in photos or even in real life, you should see my insides! It takes many hours to look “normal”. We do it to take the pressure off of ourselves and you, but it doesn’t mean we’re even close to being ok. Many people do this with chronic illnesses, so that they can feel more like themselves. It doesn’t make them any less sick, in pain, or uncomfortable.
12. I wish you knew how uncomfortable I am when you say “well I hope they fix you soon” or “you’ll feel better tomorrow”. These comments can sometimes be belittling to our disease because they can’t “fix” us. We won’t feel better tomorrow. We will never be normal. These are just facts, it’s not negativity. If you don’t know what to say to someone with this disease, try to pick up on their feelings, responding with “wow that must be rough on you” or acknowledging our pain isn’t a bad thing. It doesn’t always have to be cheery sunshines.
13. I wish people wouldn’t say “I lost the battle to cancer” or anything along those lines. Cancer didn’t win. Everyone dies. When someone dies of a heart attack, they don’t say “the heart attack won”. Fighting cancer isn’t a choice and shouldn’t be summed up to determine our strength or how well we fought it.
14. I wish you understood that getting a good nights rest or going out to get some fresh air isn’t an option for me sometimes. Yes these things feel good and I hope I can do them more often, but it’s not going to magically make me better. Please understand that this disease is more complicated than even the doctors understand, so no amount of nutrition, exercise, fresh air, will sort us out.
15. I wish you knew how much I just want to live a normal life again.
16. I wish you knew how different I feel and out of place I am.
17. I wish you knew that it will never be normal again.
18. I wish you knew the fear I feel even after the disease is removed, we have to wait in fear as it comes back one day.
19. I wish you wouldn’t avoid me because you feel uncomfortable talking to me. There are so many resources to be able to talk to a friend with a chronic illness, cancer, or any disease. A true friend will never be disappointed in what you said, but we will help you better understand it. We’d rather you learn with us rather than cut us off completely.
20. I wish you knew how much I appreciate when you say “no matter what happens, we will get through this”
21. I wish you knew how much I appreciate when you say “I’ll always be there for you, no matter what happens” and live up to that.
22. I wish that if it’s too hard for you to be there for me, you’d explain it. If you’ve lost someone with cancer and it’s hard on you to relive it, I wish you’d say that. We often blame ourselves when we lose friends gradually and never know why. We beat ourselves up about what we did wrong. We’re incredibly lonely. It’d be nice to have an explanation or try to talk things out, even if it’s difficult.
23. I wish people knew how many comorbidities this disease causes. High blood pressure, heart failure, adrenal insufficiency, chronic pain, kidney disease, bone disease.
24. I wish our doctors would actually SEE the patient in front of them. Understand that we are different. When I get my blood pressure taken and it’s in the “perfect zone” but for ME it’s actually considered high because of the amount of medication I’m on to lower it. Listen! When we tell you what the Pheo does to our bodies and what an attack is, listen! Learn from us. Know that we’re a different breed of disease. Take us seriously, we often know more than the medical staff. Just because we appear to be okay, and don’t fit in your medical mold you’ve created, doesn’t mean we’re not sick! This would prevent a lot of misdiagnosed patients, and speed up the diagnostic process if you’d just LISTEN to us.
25. I wish that you knew behind my smile, there’s so much pain. I’m exhausted, I still have to go on everyday and live my life despite this illness. But I’m tired. Not just take a nap tired, but physically and mentally exhausted from living with something that’s trying to kill me everyday.
26. I wish you knew what living in “constant fight or flight” meant. Never being able to shut off. Always having adrenaline pumping through your veins.
27. I wish you understood that your anxiety is not the same as what my anxiety from this disease feels like. I’m not talking about normal anxiety that anyone can get, I’m talking about chemically induced anxiety panic that is caused by an overflow of hormones in my body. It’s like anxiety on steroids mixed in with impending doom and a dash of dread.
28. I wish you knew how much this disease alters the trajectory of our lives. We can’t plan, we have to live minute to minute. We’re often told were lucky because it’s a slow growing illness and so even if we die, we’ll have plenty of time. Excuse me?!!! The level of ignorance here is just inexcusable.
29. I wish you’d understand that under all of the things I’ve talked about today, I’m still the same person! I’m still here. Treat me that way. I still have hopes, dreams, I still like the same jokes, I still have the same interests. I am not my cancer. I don’t want you to only treat me like I’m “normal” when I look “normal”. I want to be treated normal even when I’m at my sickest, especially when I’m at my sickest!
30. I wish you wouldn’t ask “how are you?” But “is there anything I can do for you?
31. I wish you knew that even after taking 20 different medications, I don’t feel better. They allow me to get up and semi function, but they’re not a cure.
32. I wish you understood there isn’t a cure.
33. I wish you understood that I can’t control my anger or emotions. It’s not me, it’s literally my tumors deciding what mood I’ll be in at that particular moment.
34. I wish I didn’t have to talk about any of this.
35. I wish I never heard the word pheochromocytoma.
I hope this helped get a glimpse into our world, and I hope you can use this as a resource with your friends and family when you want them to understand more.
If there’s anything I missed, or anything YOU want to ask, please leave a comment down below and I’ll do my best. Don’t forget to share
Doesn’t mean I’m terminally ill, confused? I was too.
I still might be, but I think it’s time someone explained what it is to have a terminal rare disease.
With rare disease day approaching, I’d like to do my part in educating about this rare terminal illness I LIVE with everyday.
When I received my grim diagnosis of metastatic pheochromocytoma, it followed with “you have 1-5 years to live”. I was sentenced to death, and given a time frame to live my life. It’s haunted me ever since. It’s shaped how I perceive my world and how I went about living in it.
It didn’t have to be this way…
Delivering a diagnosis should be one of the most sensitive topics there ever is in a career. It should explain the illness you’re facing, and explain how to live with it.
Just because I’m terminally ill doesn’t mean I have to die…
It can take years upon years to die, a terminal illness means you will EVENTUALLY die of that illness, but no one should be signing your death certificate.
Just because I’m terminally ill doesn’t change the standard of care, I want to live. I deserve every treatment, every intervention, every respect that someone else with a chronic condition or just a condition gets.
I’m still living, and should be treated that way.
Just because I’m terminally ill, shouldn’t mean I’m given palliative care to help me die.
It means I should be given palliative care options to help me live, to extend my life, to improve my quality of life.
Just because I’m terminally ill, doesn’t mean I don’t have a beautiful life ahead of me.
It just looks and feels different than yours, but it’s still worth living.
When I was given my grim diagnosis, it’s all I could think about. Everyday, dying. My time was ticking. My rights were being taken away as a normal patient.
Just because I’m terminally ill, doesn’t mean I should sign a DNR to get treatment
Yes, this is illegal. But it didn’t stop the hospitals around me from withdrawing treatment, and making me too scared to call an ambulance when in an emergency because I thought they’d kill me.
Just because I’m terminally ill, shouldn’t mean I had to move three hours away to be close to a hospital who gets this.
It’s so important to have proper, quality, care. Doctors who understand what a terminal illness is, that are willing and excited to treat your rare disease with the respect it deserves. Ready to give you the respect you deserve.
Just because I’m terminally ill doesn’t mean I should have no dignity…
When I was “dying”, I lost my dignity last. I held onto it for quite some time, but eventually it went away. It was the hardest thing to lose, it shouldn’t have happened, but it did. It didn’t have to be this way.
I don’t consider myself dying anymore, I consider myself someone who’s living with a terminal illness.
I consider myself someone who will eventually succumb to this disease, but not for a very long time.
I consider myself someone who’s fought hard and long enough to share this information with you all.
I consider myself someone who can help change the way terminal illness is perceived.
If you receive that grim diagnosis, please, please, don’t give up. There ARE treatments that work.
There IS a way to be stable.
Quality of life CAN be different.
You need support, in all forms, you need palliative care, (proper care), you need a team of doctors who listen and respect you. Most of all.. you need hope. That’s what this gives you, your hope to hold onto and never let go.
I’m no stranger to treatments and procedures, that’s the understatement of the century! However, getting something done because I WANT IT done, that’s a new concept as of late.
When you’re sick, your body becomes sort of …everyone’s. It doesn’t feel like your own anymore, a product of the medical field.
Well I’m taking my body back, and I’m loving it.
Pheo VS Fabulous was built around the statement of staying fabulous throughout it all, never losing my joy. Well I think I’ve taken that in stride, but it gets difficult. It’s about time I can take back some of my fab. So I’m doing that in every way possible. Physically and mentally.
Have you ever heard the expression, “I woke up like this”?
When you have an illness, it takes a toll on you. It takes a huge mental toll, and that turns into a physical toll. We often just stop doing things for ourselves because everything is so damn hard. We do things out of convenience a lot, and stop doing things because they’re enjoyable and we WANT to.
This may sound crazy, but any time I go into see the doctor, or am surprised by the fact that I have to go in an ambulance, I always think first … “how do I look?” I HATE looking sick. I feel like the moment my illness takes over my physical appearance, it’s won. I’ve lost that one part I can control.
When I was SUPER sick, (bedridden) I did EVERYTHING possible to stay me. My hospital table was a makeup table, my slippers were cute, my pjs were always matching, I got my husband to do my hair. It was just important that I didn’t lose myself completely.
Now that I’m feeling better… I wanted to treat myself to a few things that could make this job a little easier in those times. When I’m too sick to do anything at all, but I still wanna wake up looking absolutely fabulous!
Operation lashes and brows commence!
I know I know, I’ll be the first one to admit… I’m a bit extra! 😂 I’m okay with that. Not everyone is going to feel the same way as me about these things, but I guarantee you you’d enjoy them just as much!
So first, I started with something practical. My eyebrows. The defining feature of the face. I was always extremely intimidated by eyebrow procedures because … let’s be honest, someone semi permanently changing the look of your face? Scary! That’s why you have to do your homework, and know what you want. I’d heard of microblading, a procedure where they take a hand tool and semi permanently tattoo your eyebrows in a natural way to give you the illusion of perfect brows at all times. However, it wasn’t until I’d discovered dolly lash lounge, and started researching other ways of achieving this apparent greatness, that I’d heard of ombré brows.
I would spend so much time filling in my brows with makeup, pomades, powders, gels, anything to make my brows look and feel great. Even if I didn’t do anything else to my face, I always did my brows. It was just a thing I had to do. It takes time though, and a lot of different products to achieve that perfect look. What we millennials would call the “Instagram” brow. Ha!
Ombré shading is a procedure using a machine vs by hand, and it’s semi permanent up to a year or more. It gives you the illusion that you’ve masterfully filled in your brows to perfection, except it’s always done! It looks extremely natural, depending on how dramatic you go, and it’s amazing to wake up to all the time.
Appointment time: 2-2 1/2hours
Once you’re done with the consultation, filling out the necessary medical forms, and having the actual procedure done.
I found it fairly painless, but again… this goes back to having done my research and making sure I went to a QUALITY place! I scoured their pictures on social media, read their website up and down, and looked for reviews to make sure I was getting the best of the best.
You lay down on a comfy bed, your lash/brow technician preps the area with numbing cream, (be sure to check what they use and be conscious of any allergies)! and then they start mapping out your new brows! My eyebrows were extremely sparse and uneven, so there was a lot of work to be done. When she first showed me what they were GOING to look like, I wanted to cry. I was so happy! So we went to work, and 2 hours later…. perfect brows 👌🏼
Just a side note, Katie was extremely gentle, professional, we talked so much glam, and I had the best time ever. It helps to be comfortable with the person you’re doing it with, so keep that in mind when you’re booking with a salon!
This is the first time I had to lay down for hours on end and actually have a fun result at the end instead of just a scan that showed my tumors, so I was pretty ecstatic!
Here is the first result:
So this was my first session, you can see I am red because of the procedure but they healed perfect and I love them so much! (I’m also extremely sensitive so this is normal) Your eyebrows will initially go a bit darker with oxidization, but that goes away after one week and they heal to the color your specialist custom makes for you. You have to go in once more after this a few weeks later for a touch up, it allows you to make any changes or go a bit more dramatic if you feel the need!
Mine is coming up soon, but I love my brows even as they are now. I’ll do a bit of work touching them up to darken them a bit, but other than that .. love!
Lashes…
Now, I’m a person that actually enjoys wearing false lashes in my spare time. Haha! But it’s so much work and money. Doing false lashes when you can barely sit to do your makeup in the first place… it’s a bit much.
So when I heard I could have lashes that were voluminous and beautiful ALL the time, I had to have this. Never glueing on a falsie again? Sold.
I’m sure you’ve heard of this, there’s all different sorts of eyelash extensions you can get. “Natural, hybrid, volume, super volume”
Well I wanted EXTRA volume. Go big or go home!
I went back to my technician and told her I wanted to be ultra glam, all the time. Hit me up with the biggest lashes you’ve got!
This is the first time I’ve been able to feel well enough to partake in these adventures, so I might as well go all out! ☺️
(And looking like I’ve done a face of makeup without actually lifting a finger… yeah, tempting!!!)
So I took the plunge.
Appointment time: 2 hours
Each lash is masterfully added to your own ONE BY ONE, by hand. It’s actually pretty crazy when you think about it. I’ve never seen such patience and precision. Of course, there are differences everywhere you go, but this was my experience.
I was pretty tired by the end of it, but it was worth it. Katie was also excellent at allowing me to have a break if I needed it, and overall I just felt super comfortable.
This is the end result! Again, my eyes are a bit red because of having them closed for so long so you tear up a bit, but I assure you they’re fab fab fab! Perfection.
I will link the website of where I got mine done, www.dollylashlounge.com so you can read yourself through the procedures and services list. I thought it would be more fun to hear it from me 😂
I told you guys I’d bring you along on my journey, and this is part of it.
Right now I’m all about taking back my fab. Thank you dolly lash for helping me do that.
And thank YOU GUYS for following along with all my crazy but fun ideas! I hope I’ve inspired you to do something fun and kind for yourself, because let’s face it… we all need a bit of love now and again. Why not let it be from you? #selflove
Support comes in all forms when you receive a diagnosis, but as you become sicker and the “old you” starts fading away, so do your relationships.
So many people want to be there for you when you first receive your diagnosis, but as you become sicker, when it all becomes real, it seems you start losing people one by one. There’s nothing worse than having to grieve your old self, plus have to mourn each relationship lost as you go.
One day you wake up, and all of a sudden you feel like you have no one left.
‘Hanging out’ and visits turn into text messages, the text messages turn into the occasional Facebook chat, and then even those just stop abruptly. Until there’s no more communication. Everyone just went away...
You can’t help but blame yourself,
if I wasn’t this sick, I’d still have friends.
If I was healthy and could have a normal conversation about monotonous things, I wouldn’t push people away.
If only I could be healthy and not intimidate people who are unsure how to approach this new “sick” me.
If only I wasn’t intimidated by them thinking about me being sick, and could fill in the awkward silences.
…If only I could erase all the sad eyes, the weakened expressions, and not have people who once respected me feel sorry for me.
This is the worst part, the pity.
If only these people knew that I’m the exact same person, the same person who was their friend for all those years. The same family member, the very same.
People change regardless of being ill, but it seems being ill puts a wedge in between the healthy and the sick. The unknown is often just too much. If I changed because I became an asshole I’d understand, but I’m the very same person.
This is the first time I’ve ever expressed how much it hurts.
How at my sickest I’ve never been so alone.
When someone says, “you must have a lot of people around you!” And you just don’t know how to respond.
How I don’t want to come off as ungrateful or selfish because there are some amazing people who have come into my life despite me being sick.
But those relationships lost still weigh heavily on my heart, and I wish I could have every single one back. Back to normal.
But I’ll never be normal.
So it shall remain…
What I will say is I’ve learned a few things while these relationships have come and gone.
It’s not your fault, even though it may feel like it is, stop blaming yourself.
Often people want to be there, they just don’t know how.
It’s exhausting trying to make others feel comfortable around you, focus on yourself being comfortable and the rest will follow.
It’s not your job to put everyone else at ease, if they are your friend, they will try to find a way to understand your new situation.
People who are truly your friend, WANT to know how you are. They don’t want the sugar coated answer, be honest with your friends.
Your best friends don’t mind changing plans, or understand when you can’t make it because you’re not feeling up to it suddenly.
Your best friends will make an effort to make YOU comfortable in this new changing circumstance, they’ll go out of their way to make sure you have a place to lay down in their home if you get tired, or have a fan handy for when you get too warm etc.
The people you lost were probably not meant to be close to you in the first place.
Don’t feel bad for making the decision to cut out toxic relationships, even though you might feel like you can’t afford to lose anyone else, it’s not worth putting yourself through hell to have “friends”.
Don’t take for granted the people who did stay around, know that they love you so much, and cherish them every day.
If ever there were a time to watch the news, tonight is the night. I will be on CTV news tonight at 6 with Emily Campbell discussing one of my most difficult events that happened to us so far.
It’s been a hard day, please support and tune in to see another part of what we as the terminally ill go through.
Once it’s aired , as it’s net cancer November… SHARE! Please share the story everywhere possible!!!
It will be my first time seeing it at 6 too, so I’ll be with all of you, hopefully you’ll be with me too ❤️🙏🏼
If you asked me two months ago where I was going to be today, my answer would be very different than right now.
I’m a positive person, but when you can’t walk or talk … there’s a point where positivity and realism needs to be used with caution. Which is why we dream, and dream, and dream some more. Which is what I did.
They say a dream is a wish your heart makes, well my heart did a lot of wishing for me…. but it came true ❤️
When I was admitted into the hospital unable to speak or walk, with so much pain, little to no mental function, and almost none of myself left…. if you asked me where I’d be in two months, I wouldn’t have guessed how I got my wish, and how I’m able to write about it with all of the people I care about so much.
….But here I am, doing just that.
Isn’t it beautiful?
Not giving up?
Hope
What is it I always go on about?
I’ll never let this disease take my ‘Fabulous’, well it took a lot of pieces of me this time, but I still hung onto my fab so tight… the year leading up to this was hard. The hardest year so far, but I can honestly say that we didn’t once let that stop us from smiling, no matter how awful it got. That’s what got us through.
I can also say that I smiled through just about everything.
You have to.
Because for better or worse this disease isn’t going anywhere, so you have to make a decision. Live with it, or fight against it. Eventually people can lose a fight, but I can keep finding ways of living with cancer. Makes sense huh?
I think I’ve figured out this nasty little turd, shhhhhh!
I truly wanted to update everyone and tell you that for right now I’m feeling much better all things considered, I’m not running a marathon anytime soon but I made it to the water without the help of my wheelchair today and I haven’t done anything ‘crazy’ like that in a long time! 😂
The reason why I wanted to share this is because we’re far too hard on ourselves and we don’t celebrate the small stuff. I’ve come such a long way and I don’t ever recognize some major milestones even though they may seem like small ones. It’s about time we realize things like this may not come around again. So celebrate EVERYTHING!
And don’t forget that beautiful smile 😀!
I just wanted to share a bit of good news, I’m feeling MUCH better. I don’t know where I’ll be in the coming months, but as for right now…. I’ll take it. I have a long road ahead of me, but as long as I keep smiling, I’m sure my fabulous can get through anything.
If you have been in the “rare disease” world with us, you may wonder what the reference is to the zebra.
When you hear hoofbeats, we are trained to think horses, not zebras … 🦓
This means that in a world full of thinkers where the first answer is always to rule out the “obvious” answers first, us “rare” zebras often get misdiagnosed because it’s just too bizarre or too complex to possibly be real. Right? Wrong. We are real, we are rare, but we’re there.
NOW, imagine living in a world where you’ve only JUST started to find ways of settling in becoming a zebra, but now….. you’ve become even more confusing that even that doesn’t fit – Shall we say….. exhausted? Now you must be a unicorn 🦄
As much as I LOVE unicorns, it’s not something I wish to be health wise. However, we don’t always get what we wish for…
Or else I wouldn’t be a continuous medical mystery. A zebra, a unicorn, stomping my hooves as loudly as I can to no avail… A very complicated, extremely complex little unicorn. So desperate to be figured out but constantly misheard, misunderstood, and continuously misdiagnosed.
I was able to begin discussing this journey when I began to regain my mental stamina a few days ago here, thanks to my amazing specialists who are working towards figuring out what I am now referring to as my puzzle 🧩
With so many pieces (symptoms), and crisis’ happening – it’s proved difficult to sort out another compounding diagnosis when already living with such a rare disease.
Does that excuse make it okay for our hooves to be ignored? No. It clouds what is potentially a more potent and dangerous lurking enemy. So, what does one do? Well I’m not going to lie. It’s been a hell of a ride, it’s been isolating, I’ve felt ways I can’t begin or want to describe right now, but what I’m here to say right NOW is that we are still fighting.
I’ve said it now and I’ll say it again, if you don’t fight for yourself… who’s going to fight for you?
It’s the unfortunate truth.
This is your life. It’s yours to save.
We have come to realize this through a series of challenges I’d prefer to have not had to endure, but change is the only constant … so we are now looking ahead to the journey we are choosing to see as a positive one. Because that’s how you get through this, often we talk about ‘fighting it’ but we don’t talk about how to beat it.
We have to, because to us we see it as an opportunity FOR change, for answers. We just want answers. No matter what they are. Going back to basics and feeling helpless is certainly not the answer.
Going backwards when you have already been robbed of the ability to move forwards is one of the most helpless feelings to have in the world.
We are coming on 3 weeks in the hospital, with the help of my incredible team I am functioning at a much more tolerable level so far – so that I can actually do plenty of testing in order to get these answers. This journey is tough, but we are fighting our hearts out. I hope you will be alongside with us, because I have a feeling we might just need that little extra bit of prayer and pixie dust
🌎✨🌈
Remember that gold standard Gallium-68 super amazing impossible-to-get fancy scan I got in order to get accepted to this clinical trial a while back? Well…
My amazing husband Doctor cupcakes was able to get me in AGAIN directly from the hospital on a day pass to get that super amazing scan today. What would normally take 4-6 weeks, took 48 hours, so a huge huge huge thank you to everyone in Sherbrooke, QC. You guys truly were my angels and we are so grateful for everything you did for my situation. Thank you for understanding and extreme considerations 😭😷
My heart is so full of gratitude, and I wanted to take this opportunity to share that.
Here’s a little glimpse of our radioactive day pass mission, a day in the life of a hospitalized unicorn 🦄 😂
