PseudomyxomaPeritonei

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    The Christmas Tree

    I never used to get fevers or vomit. Even with a ruptured #appendix & #SepticShock my temperature was normal?
    Now I'm afraid this is the end everytime I reach for the thermometer.
    I've survived the above mentioned ruptured appendix, #cholestectomy , blocked & 3 bouts of #Sepsis. My go time symptoms are vomiting & fever.
    With all the abdominal trauma, I have #Gastroparesis or literally a broken gut. I must be mindful of what I eat & do enemas to have a BM.
    I spent Xmas 2013 in the hospital. I vividly remember being visited by my Dr. Jan 1, 2014 at 10AM to be told I had #PseudomyxomaPeritonei. I had #Cancer. Then the hospital team recanted their diagnosis & I've been recovering ever since.
    But I haven't recovered. I know after all my body has been through I should just feel lucky to be alive, but I'm not 1 to "exist". I want to LIVE!
    Even in the depths of #Depression, my will to die was actually I don't want to live like this anymore.
    So, now I sit with thermometer near by, no energy, no appetite, relentless pain in upper right quadrant that radiates to my back knowing my body is pristine until it's not, just waiting for the beast to show itself once more.
    I haven't put up a Christmas Tree since 2014 because that year, the tree was a Valentine's Tree, St. Patrick's Tree...I got it down before Easter though.
    I put up the tree this year to move past the traumas, to say I am the healthiest I've been in a long time, to say I am thankful for my life & to say not this year. But I can't erase the brink of death from my memory & so here I sit & wait...
    Thanks for reading!
    #MedicalPtsd #Fever
    #Fear #Depression #Anxiety

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    See full photo

    The Christmas Tree

    I never used to get fevers or vomit. Even with a ruptured #appendix & #SepticShock my temperature was normal?
    Now I'm afraid this is the end everytime I reach for the thermometer.
    I've survived the above mentioned ruptured appendix, #cholestectomy , blocked & 3 bouts of #Sepsis. My go time symptoms are vomiting & fever.
    With all the abdominal trauma, I have #Gastroparesis or literally a broken gut. I must be mindful of what I eat & do enemas to have a BM.
    I spent Xmas 2013 in the hospital. I vividly remember being visited by my Dr. Jan 1, 2014 at 10AM to be told I had #PseudomyxomaPeritonei. I had #Cancer. Then the hospital team recanted their diagnosis & I've been recovering ever since.
    But I haven't recovered. I know after all my body has been through I should just feel lucky to be alive, but I'm not 1 to "exist". I want to LIVE!
    Even in the depths of #Depression, my will to die was actually I don't want to live like this anymore.
    So, now I sit with thermometer near by, no energy, no appetite, relentless pain in upper right quadrant that radiates to my back knowing my body is pristine until it's not, just waiting for the beast to show itself once more.
    I haven't put up a Christmas Tree since 2014 because that year, the tree was a Valentine's Tree, St. Patrick's Tree...I got it down before Easter though.
    I put up the tree this year to move past the traumas, to say I am the healthiest I've been in a long time, to say I am thankful for my life & to say not this year. But I can't erase the brink of death from my memory & so here I sit & wait...
    Thanks for reading!
    #MedicalPtsd #Fever
    #Fear #Depression #Anxiety

    1 comment
    Post

    I used to be so strong

    I used to be so strong!

    I could marvel at my tenacity & ability to achieve big things for a small town girl. It was no big deal to leave my family for the big city, interview managers, call venues for gigs, call up the Winnipeg Jets & ask to sing the anthem, move to Vancouver by myself because it was the last time I hoped to be a party of 1. I met the love of my life in YVR & we will celebrate our 12 year anniversary on Jan 10/19. He was attracted to my independence & fearlessness. Now I rarely leave my home without him.

    So what happened? LIFE!

    My brother died, we got engaged, bought our 1st home, planned a wedding, moved, & got married in 6 months. This caused me to seek help for #Depression & #Anxiety.

    Being open about mental illness lead to bullying from coworkers who nicknamed me “Rollercoaster”. I was fired without cause NYE ‘08, but was too fragile to pursue a human rights complaint. Then my husband was fired 5 days later. So, we both took whatever jobs we could in order to stay afloat.

    We both had jobs we loved & felt like we were winning again & then my appendix ruptured. I was so scared of being fired, I went to work for 5 days until I passed out from septic shock. Even ashen grey & with an acute abdomen, the ER could not figure out what was wrong with me. My temperature & blood counts were fine? The triage nurse that checked me in was leaving & saw me still sitting there. She found the Doctor & I was in surgery a ½ hour later. That was followed by 10 days in the hospital because my darn bowels would not wake up.

    I tried going back to work, but between the “IBS”, that’s what the Doctors called my gastro issues, & migraines I’ve always had, my work attendance was poor at best. We were also at an ER weekly bc I was SCREAMING in pain. Doctors began to avoid us, a Nurse actually asked me not to come back anymore. They just couldn’t help me. I had to quit my job when I was hospitalized for 6 days for #Migraine treatment.

    So with me not working, we started liquidating our savings & sold 1 of our cars, but we got to keep our house.

    But, the next organ to go was my Gallbladder. This was supposed to fix all my Gastro issues. It just made things worse & our rotating hospital ER visits continued. I would make a point of putting on nice clothes & have my business husband stay with me as I had been made to feel like I had no credibility on my own.

    We fought so hard, but we could no longer catch our tails. We were paying this to pay for that then using that money to pay for… We had to sell our house. It sold & we moved into a basement suite. Defeated but rich in love!

    When Western Medicine turns on you, you try other things. We tried massage, chiropractor, acupuncture, colonics, & settled on Naturopathy. I was getting a Myers Cocktail,

    https://balancenaturalhealthclinic.ca/blog/2013/the-myers-cocktail-a-boost-for-mood-energy-and-immunity

    & instantly started having seizures. Then I started vomiting & was moaning in pain. We went to our local hospital & found I had sludge in my common bile duct. My liver enzymes were through the roof & I wasn’t even a weekend warrior anymore.

    So, I got to be the last ERCP before the Xmas shut down. I was in a large makeshift room with 20 other patients. I had 3 IVs going, so I put on red lipstick on December 25th because I’m festive like that. Visitors of patients bullied me? Well you can’t be that sick if you can put on your make-up! Grinches!

    I went home on December 28th, but I woke up so weak I couldn’t get out of bed. My husband came home & took me back to the hospital. This time I was septic again, but they couldn’t figure out why. So I underwent a barrage of tests. I had a CT on NYE. The 1 of 3 Gastroenterologists still talking to me was called in at 10AM New Year’s Day to tell me I had #PseudomyxomaPeritonei,

    https://www.cancerresearchuk.org/about-#Cancer/pseudomyxoma-peritonei/about

    a very rare cancer that spreads mucus throughout your peritoneal cavity. It is not detectable in blood or lymph & is usually found by accident.

    Just when I get my mind around having such an invasive cancer, it was immediately taken off the table. I was being treated by the student team & the Gastroenterologist that did my ERCP. The hospital staff blamed the students for the wrong diagnosis. I was then removed from a room & put up again in the hallway. I told the nurse this was my 3rd hallway. She laughed & told me I could write a review on the best one?

    I don’t know why medical staff seem to dislike me. I’m polite, try not to be demanding but if you question anything or get caught reading your chart, you’re treated POORLY. How dare I look for answers that no one was capable of giving me.

    This was a really rough 18 day hospital stay, but at least I did a gastric emptying test. This showed slow emptying of the stomach, weak peristalsis, & malabsorption. However, somehow I caused all this so the next Doctor to visit me was a Psychiatrist. I was so mad but knew I had to keep it together. It makes me so angry that when there isn’t a nice, tidy answer to a medical query they switch to it must be her #MentalHealth. Anyways the Psychiatrist couldn’t find any acute mental issues either.

    I never got better. However, we FINALLY got a Family Doctor during this time which is like winning the lottery in Vancouver. It’s like proof you’re a good person and not just a “drug seeker”. I was sent to an Internist who confirmed #Gastroparesis from all the abdominal trauma. His recommendation was pain control as this was as good as life was going to get for me.

    This was April 2011 – January 2014. I applied for #Disability & was denied 3 times, appealed 3 times, had a videoconference, was awarded disability, only for that decision to be overturned, then was awarded disability this June, 2018.

    It’s hard enough fighting for your life without being made to feel like a liar or inconsequential. We had lost everything we could, including our window of having a family. We were both meant to be parents so this is still hard for us to accept.

    The years since have been a long game of Whack-a-mole. I get knocked down, but get up again. It could be severe stomach pain, no energy, inability to eat, #Insomnia, #Fainting spells, seizures, migraines, & having to do an enema to have a bowel movement left me passive suicidal. Again I sought treatment & saw a therapist once a week. Just when I was getting to the root of my depression, the government funded program ended. I felt another loss & a return of depression & anxiety I fight daily.

    But somehow, some way, I found a little more gumption.

    In December 2016, my former band called me to do a 20 year reunion. In the audience was an old friend with an indigenous band and asked me to join. I had always felt ashamed of my Métis heritage & now reunited with my birth family, I was ready to explore the culture, spirituality & sing the stories of the Anishinaabe Peoples. We were nominated for a Juno Award. What a trip!

    So on the days I feel like I can’t go on, I look at this picture & say

    STAND UP & SHOUT!!!????

    & so can you! I believe in your inner warrior!♾❤