Hello my lovely friends! 
Wanted to share another update with you all! Please forgive me for being behind on personal messages because i love so many of you and your care and empathy means so much. My pain has been getting worse since my last update - more intense and sharper. I do have good news though! I finally got approved for disability. I know it's not something to be proud of and believe me when i say i want nothing more than to work and be normal but at this point i really needed it with the medical bills. Between medicine and surgeries it's been a real hardship when you can't earn an income. I had to fight years to receive even the small amount but i'm just happy to have my pain acknowledged and not be treated like i'm exaggerating or a young person who doesn't want to work. It's incredibly scary to be 23 and stuck w/ a condition that keeps me in bed most days. Its really horrible to feel pain 24/7 and the pain that is so bad I can't even find the words to make others understand. I barely leave my home except for doctors and medical reasons. Polyvore is my escape and as I've said before i don't think i would be coping as well as i am w/out this site and amazing members! 
Thursday i go back to the colon surgeons for a post-op they did a quick procedure to follow up the colostomy and that went well. The colostomy is still doing great and has taken pressure off my pelvic area. ANYTHING helps at this point. I know this condition is something i may never be free of so any small amount of relief is worth it. I currently still have the catheter which obviously is so painful not only because it would be for anyone but because i can't be touched in the vaginal area and have a tube down there now. not fun. It's been at least 5 months (they've of coursed changed it which is horrible too) but i can't move my pelvic muscles so without it my bladder is being stressed out and i'll just need to go to the ER anyways. The doctor is going to do a bladder neurostimulator implantation. Of course if you've know me or been following my story you know i've already had at least 4 permanents and several temps implanted and removed in the past but the doctor and i agreed that it's worth a shot because the temp is an easy procedure for him to perform (although i still find these devices to be one of the most painful things i've experienced besides my "normal" pain) and he told me if that does not help then he has agreed to do a Urostomy. Basically it's like the colostomy but it will lead from the bladder out my stomach. I told the doctor i'm running out of room on my body XD i have the colostomy on my left front hip, pain pump on my right front hip and then i'll either have a stim on my back right and i'm not even sure where the urostomy would go - i was telling an old friend how superficial i use to be and self conscience about my body. Also i took such simple things for granted....like getting out of bed or showering. The simplest things in life we do without care until a condition hits that changes everything. 
anyways that is where i am - mentally i'm doing alright. I have bad days but i try not to dwell or over think what i'm facing or where my life is going. I try to get lost in music and art, sometimes the pain is so bad i can't even do that but i just take like hour by hour. That's all i can do at this point because i'm still at a dead end w/ the pain. I've exhausted everything. So i'll wrap this up, i  love each of you for being here for me through the good and bad. I've had too many people give up on me or not care enough to stay......
i hope everyone is well, and also if anyone needs someone to talk to message me anytime. I'm always here for you guys, even if we haven't met yet - i'd love to help you through your hard times as well. I'm probably the most open minded person you can talk too.I'm open to helping you with any problem. Big or small - love ~ Des 
P.S. join my groups if you'd like :) 
MUSIC IS MY ESCAPE (i moderate this group w/ my brother @nathaniel-the-assassin
http://www.polyvore.com/music_is_my_escape_emo-goth-punk-dark-bands/group.show?id=186085
THE ANYTHING POLYVORE GROUP 
http://www.polyvore.com/anything_polyvore_group/group.show?id=130824

IMPORTANT: THIS ISN'T A "TAG" LIST - I'M SIMPLY LETTING CERTAIN PEOPLE I KNOW AWARE OF MY UPDATE :) I DON'T DO THESE OFTEN SO DON'T WORRY ABOUT SPAM <3 promise :) 
@houston555-396 
@paperdollsq 
@nahed-samer 
@blade-blood-lockheart
@hattie4palmerstone
@asia-12 
@no-where-girl 
@stardustnf
@easy-dressing
@emcf3548
@shizandgiggles
@helenehrenhofer
@sereneowl
@michelle858
@majezy
@lastchance
@madhatter999
@xiandrina
@iamrunningwithscissors
@idocoffee
@hrfost1210 
@dragananovcic
@dadrumma
@thewondersoffashion
@loves-elephants
@kittyfantastica
@eula-eldridge-tolliver
@rainie-minnie
@coolmommy44
@undici
@alynncameron 
@selmir
@paculi
@cmb51
@hamaly
@dora04
@flattery-guide
@bamaannie
@drenise
@xo-nataliiee-xo
@hastypudding
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Comments

11 comments

affton
Wrote two days ago
So sorry to hear of your constant pain. It sounds like you have endured so much for someone so young. I hope you are able to find treatment to help you. Hugs xxx

ulusia-1
Wrote 6 days ago
Sending love from Czech Republik dear! Be strong 💕

easy-dressing
Wrote 11 days ago
Love and prayers your way❣❤️🙏🏻

mia-de-neef
Wrote 12 days ago
Don't know what to say after reading this. We often complaint about stupid things and we forget what is most important in life : health.
Last week i lost my father. He was 82 years old and also had a lot of pain due to his diseases. 2016 was a very tough year for him and my family. What i try to learn from my loss, is that there are lot of beautiful things in life and that we should enjoy more.
I'm glad for you that you can find pleasure in Polyvore and other things in life, besides your pain. I hope they can help you to make life more comfortable for you. Wish you courage. Big hug !! 😘

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ALL sets welcome! FASHION - DOLLS - ART - INTERIOR (HOME) literally ANYTHING! CONTEST EVERY WEEK W/ A UNIQUE THEME EACH TIME! We will also have PROMOTED contests occasionally W/ TRUSTED brands. This group is ALWAYS ACTIVE! MY PROFILE: Desiree- @irresistible-livingdeadgirl
 
ATTN BUSINESS / BOUTIQUES / SHOPS - Message if interested in promoting your store or brand in a contest! @irresistible-livingdeadgirl
 
MY OTHER GROUPS:
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ANY set featuring a BAND or ANYTHING DARK you love! FASHION or ART!
EMO - GOTH - DARK HUMOR - MACABRE - SCENE - GROTESQUE - MORBID - PUNK - CREEPYPASTA - DARKER ART - ANIME - COSPLAY SETS - HOT TOPIC - GRUNGE - MOSTLY BLACK CLOTHING and even TV SERIES SETS. Each contest will feature a dark theme or a band! EXTREMELY ACTIVE!
http://www.polyvore.com/music_is_my_escape_emo-goth-punk-dark-bands/group.show?id=186085

MUSIC IS MY ESCAPE emo-goth-punk-macabre-bands-dark art or fashion

MUSIC IS MY ESCAPE emo-goth-punk-macabre-bands-dark art or fashion

Submit ANY set featuring a BAND or ANYTHING DARK you love! FASHION or ART! EMO - GOTH - DARK HUMOR - MACABRE - SCENE - YOUTUBE - GROTESQUE - MORBID - PUNK - CREEPYPASTA - DARKER ART - ANIME - COSPLAY SETS - HOT TOPIC - GRUNGE - YOUTUBERS - MOSTLY BLACK CLOTHING and even TV SERIES SETS. Each contest will feature a dark theme or a band! Examples of bands: MARILYN MANSON, ROB ZOMBIE, GREEN DAY, MY CHEMICAL ROMANCE, MOTIONLESS IN WHITE, WILLIAM CONTROL, AIDEN, THE CURE, BLACK VEIL BRIDES, SLIPKNOT, NEW YEARS DAY, HOLLYWOOD UNDEAD, GET SCARED, IN THIS MOMENT, MINDLESS SELF INDULGENCE, NIRVANA, THE MISFITS, SLEEPING WITH SIRENS, A7X, PENCEY PREP, FALLING IN REVERSE, ASKING ALEXANDRIA, BLINK-182, FRNKIERO ANDTHE CELLABRATION, FALL OUT BOY, PANIC! AT THE DISCO, OF MICE & MEN, BRING ME THE HORIZON, SAY WE CAN FLY, PARAMORE, RAMONES, PIERCE THE VEIL, EVANESCENCE, ESCAPE THE FATE, BULLET FOR MY VALENTINE, AND MANY MORE...♥ MY BROTHER & I RUN THIS GROUP TOGETHER, VISIT OUR PROFILES BELOW:
Desiree @irresistible-livingdeadgirl
Nathan @nathaniel-the-assassin
group created on: 10/2/14 ♥
MY OTHER GROUP: THE ANYTHING POLYVORE GROUP
http://www.polyvore.com/anything_polyvore_group/group.show?id=130824

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