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I’m flipping out!!!

So I have been dealing with chronic pain from myofacial syndrome, Sjögren’s, deteriorating spine, surgery on said spine, migraines, and various other stupid issues for the last 15-20 years. Now 4 wks ago I had a mini stroke. And had a ct for that. They said there was no bleed that they could see but were ordering a mri to look further. Today my Dr calls and wants to discuss the ct. she says I have a 1cm tumour in the frontal lobe. Since the stroke I have had headaches every day from 2pm ish into the night. Gone by morning. She says it all could be tied in together. I’m losing my mind now. There is so much that has been going one for last few years that was leading to this but I blew it off. What do I do now?????? #myofacial #TIA #MiniStroke #Tumor #sjogrens #Migraine #Cancer

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Ovarian Fibroma

I've just been diagnosed with an Ovarian Fibroma. I'm in alot of pain with it but my Dr won't give me anything stronger than tramadol. Anyway what is your experience with Ovarian fibroma and what treatment and investigations where done for you? I'd just like to know so I can prepare myself which will make me feel less anxious. I'm off to see the gynaecologist tommorow. #OvarianCyst #fibroma #Tumor #ovaries #HealthAnxiety #lump

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Prayers Please

This is my daughter’s dog. Today she has surgery to remove a tumor and see if she has cancer. If you will, please say a prayer for Lizzie. Thank you so much! Hugs ❤️ #ChronicMigraines #Migraines #OccipitalNeuralgia #neuralgia #ADHD #Fibromyalgia #Anxiety #Depression #CheckInWithMe #ChronicFatigueSyndrome #OnedayAtaTime #Tumor #Cancer

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The “Life Hack “ I learned in the ICU

I was in the most pain I had ever been in my life , high as a kite , in clinical , sterile , terrifying ICU .
When I learned the world continued to spin , even when I wasn’t really a part of it ,

And believe me , that is a heartbreaking , terrifying and eye opening thing to learn when you are 17 .

But heck . Getting half your liver removed will teach you a lot of things .

I remember after one night in particular, the roughest night I had ever had an honestly felt shocked I survived . I had this darkness come over me .
Like every good and happy thought about my life had completely vanished .

And I came to the conclusion that to stay sane . I would find one good thing in every day .

Even if it just was that “ The nurse had really cute hair “
Or “ I was in a bit less pain than yesterday “ or “. I only puked 5 times today instead of 10 “

And “ finding that good “ is a little tool I’ve used almost every day sense .

On my worst days. I’ll try to find the good . Even one ounce of good.
Whether it be a sunflower growing outside , a really yummy sandwich . the sunset , someone opening a door for me . or someone who has an insanely good laugh .
And I’ll hold onto that good like it’s a life preserver in the midst of a tsunami.

But this silly little “life hack “
Has taught me one thing .
That the quote is true that “ Where there is good , there is God”

HE is the one who paints the sky every night .
He made the field of flowers , he personally designed that sunflower growing across the road , and I bet he knew it would make me smile .

His love can be found in random unnecessary but amazing acts of kindness.

The purpose he gave us to “have joy “. Can even be found in a incredible laugh that lights up the room.

When I find myself complaining that “ life is hard “
Or “ God must not hear my prayers.because I’ve never gotten my miracle “

I forget that he gives us a million little miracles each and every day .
We just have to take the time to see them.

I don’t believe that happiness , true happiness is the result of “ everything going right”
But true happiness comes when your grateful to God for everything you have ❤️.

And believe me . This is something I am FAR from perfect at applying in my own life .
But as happiness seemed to be the theme of the talks at church today .

And with how hard the past couple of days have been .
It was just this beautiful little reminder of all the amazing things God has given me ❤️

#smileon🐷 #spoonie #faith #christianblogger #thechurchofjesuschristoflatterdaysaints #CVID #UCTD #Tumor #autoimmune

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Tumor burning pain?

I have a #Tumor on the side of my foot by my heel and under the ankle. I have surgery to remove it tomorrow, but last night it woke me out of a deep sleep with the most horrible #Burning #Pain #he . It felt like I was stung by a wasp and my whole foot and heel were effected. Has anyone else felt this?


My Vocal Chord Paralysis

When I was two years old a Tumor was found inside of my chest. It spanned from the base of my brain to my lungs and largely encompassed my airways, and trachea. Many surgeries were performed in order to remove the tumor and improve my breathing, which included a tracheostomy and vocal chord lateralization.

No fault directed towards the amazing doctors that have saved my life more times than I can count, but it was those procedures that caused my Vagus nerve to be permanently damaged, resulting in paralyzed vocal chords for the rest of my life. While I am so very grateful for having been given a chance to live a life at all, I will say that dealing with the after affects of these medical complications has certainly been a long and trying road.

Having to grow up with constant hospital visits, a voice that could only whisper, and a slew of scars across my body, was a rather hard concept for me to accustom to. The unusual nature of my voice made basic socializing difficult, and being a typical self conscious girl, it took years to accept the appearance of the deep red scars I was left with.

But with every comment and question and assumption of my voice I have had over the years, (everything from asking if I was mute, to being told I could not communicate properly with my future kids) there came a point when I finally came to accept the fact that not everyone Will understand. And that is ok. It really is.

After undergoing over 30 surgical procedures throughout childhood, I am currently 19 and have managed to be surgery-free for a full five years. Having these experiences has been a battle, one that I am still discovering how to fight each day, but I am simultaneously grateful for how strong the continuous fight has made me. It has given me an additional sense of empathy for others who struggle as well, and I always am able to count my blessings when I remember just how lucky I am to be as well as I am today.

I encourage all of you out there to remember that no matter what trials you may be faced with right now, your fight matters! Not only to you, but to every single person you encounter.
Let these grating experiences polish you, not tear you apart
Allow each and every scar, either surgical or unseen to the eye, to become part of you (because dang you deserve be proud of your fight! Every bit of it)

And wear each scar with pride, knowing that you are forever stronger than what has tried or will try to overcome you.

#VocalCordDysfunction #MentalHealth #Surgery #Scars #Tumor #Tracheostomy


The long wait #Headache #Hospital #Tumor ?

I'm in hospital at the moment. Was only supposed to go in for the weekend to see if the prof could break the terrible headaches I've been having for the past few months. He ordered a scan and found a scar in my brain and a mass. Yesterday more tests followed. Now I'm anxiously waiting for him to do his rounds to tell me what is going on. Spare a thought please?


Received some news that I don’t know how to handle.

Welp... looks like I have markers in my blood that usually only show up if your body has a tumour.
I’m hoping it’s a false positive. A scan is being scheduled to figure this out. Hoping for the best but it’s really hard not to prepare for the worst. #Fibromyalgia #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #Tumor