“Listen to your body”…?

Hello? Body? I’m listening! you did WHAAAAT?!

I’m sure you’ve heard this phrase, probably hundreds of times. Although it is great advice – what does it actually mean?!

There’s 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. That’s all true, but what about all the other important aspects of it?

There’s a lot more to it than you’d think. Most of us with chronic disease are in tune with what’s normal and what’s alarming.

Your body will let you know”

Most people when recalling a diagnosis story, they’ll tell you that golden advice. They will say “your body will let you know, you just have to listen to it” 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.

no one knows your body better than you”

Not all of us are in tune with our bodies, especially if you’ve never had a major health condition. We can brush off a lot of symptoms because we’re unsure of their importance. So I’m 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 you’re someone who has no pain at all, take note of that too. If you’re a woman, take note of what your breasts feel like, on and off your period. Get to know your smells, if you normally don’t have a perspiration smell or do. Do you often get headaches or is it unusual for you? Do your eyes twitch when you’re tired, or all the time? Is your skin very dry? Always or just sometimes? How’s 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 it’s giving us cues. Or in some cases, alarm bells.

It’s pretty normal for most people to have the odd symptom here and there, it’s typically nothing to be alarmed about.

When I start to become more alert is when I experience a new symptom that I’ve never had before or haven’t had for a very long time. I take note, and I follow it to see if it’s getting worse or becoming consistent.

I break down the urgency by persistent or consistent. If you’re experiencing the same symptom over and over again, that’s when your body is really trying to tell you something.

If I’m experiencing a symptom that’s worsening, that’s when I’m 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 didn’t seem like such a big deal at the time. I can’t 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, it’s not to be ignored.

I’ll 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. It’s not for nothing, but it can be due to lack of sleep, or stress. If they become more frequent and severe, that’s when I’ll bring it up at my appointment.

Energy levels and fatigue: if I’m sleeping well, and doing all the right things – yet I’m still exhausted… I’ll 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 it’s 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 wasn’t a big deal. “My skin is just dry because of winter”, or “I just have dry skin”. That may sometimes be the case, yes, but I’ve 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 it’s important to be aware of the trends.

Hair loss: it’s normal to lose a few strands of hair in your brush, and in the shower. However when you’re losing clumps, getting bald spots, and it just falls out without brushing or washing, it’s a cause for concern.

Brain fog: some of us can get a bit foggy when we’re 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. That’s 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 it’s related to lack of self care. If it’s really an irrational random reaction, I take note because it’s 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 you’re someone with a lot of different symptoms, it’s best to take note of the ones that stick around or are particularly painful.

Once you have your baseline of what’s ‘normal’ 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, that’s when you can begin to really listen to what it’s 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 doctor’s appointment here.

Sending love, unicorn magic, and a whole lot of fabulous your way 🤍✨

Pheo VS Fabulous

@pheovsfabulous

It’s too much.. and that’s okay

Somewhere along this path I created, pheo VS fabulous, I must have convinced myself that I had a responsibility to maintain this “fabulous” persona at all times.

I said at the very beginning, I would never lose my fabulous, this disease would never take that away from me. Well, it hasn’t, and it never will, but I also find myself incredibly reluctant to write when I need it most… when I’m tired of being strong, when I’m literally barely holding on.

I find myself grateful for a dear friend who reminded me of the most important fact I seem to have forgotten; I am sharing with the world one of the most personal, dark, painful, vulnerable, and trying times of my life. It would be insincere of me to say that I am this painfully positive robot at all times, and a slap in the face to every person who is struggling in private, but reading my very public journey.
This is not to say I have not shared my true feelings, struggled to find the words to express my unimaginable pain, and attempted to share on an emotional level what a toll this has taken on me in the last year.. I have been one hundred percent authentic, as I promised I would be when I started.
I just know that these past few weeks have been insurmountable, I have deliberately avoided sharing anything specifically because I knew I would not have the same “uplifting” message as normal. Well, that IS the point. Positivity is part of my heart, my soul, it is me, nothing changes that. I’ve realized it takes a lot more strength to share your weakness… 

I continue to posses this attitude…thinking, “this is what will get me through, we’re going to get through this, I just have to continue on like this”, and then you read the scientific facts like how pheochromocytoma cancer only impacts 1 in 4.3million people, and how if it’s gone to the liver like mine has those people have the worst chances of survival even though they only give five years in the first place, and despite my attitude, every time I go to the doctor, I’m told something else is wrong with me, this isn’t working properly, this body part has failed, this tumor around your heart is suspicious (wait what?! I have a tumor around my heart?!?!) this may be something more, but we will do more tests and come back to it (what does that mean?!) meanwhile my pain level yo-yos and tortures me and feels like a cruel joke on-top of everything else, and my hair is falling out, and my life is falling apart, or what little I have left. 

My mind does this lately, not to mention the worry I have for regular every day people things. I worry for my friends, my family, and other people’s problems. The moment I lose my compassion for others, well… let’s just say I don’t want to ever meet that person, because surely that’s not me. It’s exhausting, I’m tired.

My mind is tired, I recently said to myself that I really wanted to go on a vacation, I wanted to go to the happiest place on earth, Disney World. I had it all planned, how I would be able to go in a wheelchair and no one would be able to say I can’t go because I had all of their objections handled in advance, and I had the best trip planned and I was so excited. I’m still wishing, and dreaming, and hoping. The more news I get, and the way everything is progressing, I don’t think it will happen in the time line I wanted it to , maybe one day… but not in December for Christmas. No one is too old for Disney World, and I’ve never been, so christmas time would have been magical, and less busy (lol) I wanted to be able to go before radiation, as a way of resetting my mind and body before it goes through another trauma, because that’s what this is, a trauma. Every experience your body has to endure, it’s traumatic, and you need to prepare mentally and physically. I’m at a point where I need something to just be on my side, as much as I can find something great in everyday, I can pick and choose every little moment and find a special something, I really would just like something to come to me and show its-self at face value and reward me for being so patient and positive.

So there it is, I’ve given a basic summary of all of the horrible things that have been floating around in my mind in the past few days. I wouldn’t be fabulous if I left it at that though…you didn’t think I would let you have this one, did you pheo? 😉

Today I said to myself, “No matter how hard it is, I don’t care how nauseous I am, how much I hurt, and how weak I feel, I am getting up, and getting ready, I am going to have a fabulous day… and do something I’ve wanted to do and also been dreading for days now!” 

Hours later, many breaks, help from Serge, encouragement from both my puppies (lol), I was ready to go for my favorite lunch, and go shop for…..wigs!!! 

I didn’t want this shopping trip to be a depressing, poor me, crying experiencing. I am happy to report that I was successful in finding many beautiful styles, I overindulged as usual, true to form I shopped as I normally would.. exhausted myself and got way too excited, and couldn’t be happier. 

I suppose all of my stories DO still have a happy ending ❤ 🙂

Pheo VS Fabulous

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Continuing to find beauty in every day… Smiling through every bit of pain!

#mirandastrong

I turned twenty five

A day to celebrate magic

A night to let go of all fear

Your birthday has come, and you’re still here 

You’re so full of love, your sparkle is bright, how can we forever encapture this night?

With every obstacle faced, we now can revel in the win of this fight

Never over, never far, but not out of reach… when your Fabulous is on guard 

I turned twenty five, and it was just as sweet as I imagined it would be. Getting older is an indescribable gift, it is recognition for all of the hard work that goes into treating me.

My birthday gifts were filled with adorable home decor items, unbelievably soft robes, the pinkest of pink pillows to help me travel to and from my appointments, sexy ‘houndstooth’ gloves to keep my little hands warm and fashionable, Ralph Lauren towels to wrap myself in after a nice hot bath, an apple TV so I can watch all my favorite shows from the comfort of my bed, you see the trend? Fabulous pink, purple, and soft comforting items.. anything that brings warm and comfort to my life.

The gift that I was most grateful for? The unusual amount of energy, stamina, and excitement I could carry through all evening.. to enjoy this beyond amazing evening my family prepared for me.

Being around more than a couple people at a time when you’re ill is extremely difficult, but my family knows how to keep things comfortable, even my seven year old nephew became the ‘miranda police’ and would deliver citations when people were speaking too loud, or too close to me, it was the most adorable thing I have ever seen.

My mother made my favorite feast, homemade chinese food, which my bestfriend and I ate twice (no judgement on your birthday) and that’s what a birthday should be. Eating too much, laughing uncontrollably, making memories with family that I will hold so dear in my heart forever.

Happy Birthday, to everyone who is living moment to moment, keep sharing your fabulous, I know I will!

My Memories – 25!

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My 'lucky elephant' from my 7 year old nephew, he is a heart breaker

My ‘lucky elephant’ from my 7 year old nephew, he is a heart breaker

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Half of the fam who braved the cold

Half of the fam who braved the cold

I can't take a picture with my sister without making her laugh uncontrollably, and I wouldn't have it any other way

I can’t take a picture with my sister without making her laugh uncontrollably, and I wouldn’t have it any other way

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FEAST! Mother's homemade chinese food <3

FEAST! Mother’s homemade chinese food ❤

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Squad goals

Squad goals

My amazing mother, who will do anything for her daughter to get me through this time, she is mama soldier

My amazing mother, who will do anything for her daughter to get me through this time, she is mama soldier

My bestfriend, and my dad, we always need one picture that isn't 'pretty'

My bestfriend, and my dad, we always need one picture that isn’t ‘pretty’

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The cake that exceeded perfection... <3

The cake that exceeded perfection… ❤

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My bestfriend

My best friend in the whole world

My strength

My strength, my love, my fabulous! ❤

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Remember, there is something good in EVERY day. You just need to open your heart and find what that good is, and share it with the world!

“Fabulous is your light, your smile, your energy, your posivitity, your willfulmess, your vitality, passion, excitement, stubbornness, beauty, laugh, and how you share it!” – Pheo VS Fabulous