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@sensitivetosuffering-blog
Having a hard time rn
So many good things lately. I've been recovering well and going on adventures but right now with the bag I just feel so dirty. I feel like I could shower 12 times and spray all the febreeze in the world but still be sitting in a dumpster. I smell it everywhere and I'm scared others can too, my family says they can't but I don't believe them. Maybe I just need a good cry.
My sorority sisters, camp oasis sisters, and my actual family are cheering me up each day which pushes me forward.
Each day is a challenge and the smell of my Stoma Carl makes me wanna die but I can 100% my quality of life and hope for the future is the best it has been in 7 years
I'm stronger than this.
It's not fucking fair
Iāve been doing so good with my recovery so far. Day two I was walking and day three I was able to eat real food. Today is day four and Iām going insane. Iāve learned to empty my bag and Iāve seen my Stoma which was traumatic and a moment I would have liked to have had a fond memory of in order to cope but no I donāt get that. I also donāt get to sleep for the last 24 hours and my pain button had been removed.
All of this is because a 57 year old woman who had her gall bladder removed, is convinced she has cancer, and I think has dementia has moved into the room.
She actually hasnāt shut up since she got here at 1am one night and since has woken me up every hour on the hour tonight to the point where I am now, 3 days from major surgery, alone sitting in the family waiting room.
She talks to herself non stop, is so fucking loud and keeps saying she has to walk BITCH YOU HAVE A CATHETER IN THEY DIDNT TELL YOU TO WALK. When I got here I didnāt move for two days for the same reason so stop moving! Everytime she moves the monitor beeps but somehow it hasnāt gotten through her stupid head that that is why the beeping happens.
She has said 17 times now āIām a strong old birdā but lady shut the fuck up youāre not youāre a crazy inconsiderate old fuck. You havenāt done anything but made a 19 year old girl cry.
My first meal she didnāt shut up and she ruined it. She kept saying how she was hungry and meanwhile I too have not eaten for 4 days so I had to move and eat in tears in the waiting room to get some silence.
Then Iām so tired at 8am when my Stoma nurse comes and he wants me to learn how to change my bag and he wants me to meet my Stoma, name it and just be okay with it. Itās a big deal for those who donāt know because that pink belly button looking thing that makes noise and squirts I donāt know what has a mind of its own and itās hard to deal with initially. Anyways he comes and heās trying to talk to me and this lady doesnāt shut up the entire time saying where are her doctors. I WAITED TWO DAYS BEFORE I SAW MY SURGEON OR ANYONE BECAUSE YOU SHOULD BE RESTING. I heard nothing he said and my first Stoma moment was not relaxing and peaceful as I had hoped.
Nothing has changed since and she always forgets Iām here (MAYBE BECAUSE IM QUIET AND CONSIDERATE) her daughter is here now and she whispers nicely but the mom is still fucking loud and when the daughter leaves the room the mom still thinks she is there and wonāt shut up talking TO SOMEONE NOT THERE.
I was on the phone before and she screams in the background āROSES! THATS HIS NAMEā what the FUCK are you saying lady.
She also talks on the phone while Iām napping exclusively on speaker phone so she can scream back
Also itās been confirmed she doesnāt have cancer but she likes to keep reminding me she does in order to try to make me feel bad for her. āSheās been waiting a year for this surgeryā okay Iāve been sick and waiting for 7 years for mine. I donāt need to remind you this. Being sick from 12 onto now is a lot worse than what you have lady so shut up.
No one here cares how this is making me feel and I literately canāt be in that room anymore. The nurses are supportive and nice so I canāt ask for better care here at HUP. I just wish old ladies didnāt suck. I might go home today or tomorrow so hereās hoping I donāt flip out before then.
Colon less but not less
Yesterday was one of the most painful and rough days of my life. Coming out with a 10 in pain that shortly subsided after being on a full day and continuing on morphine. It's gone. Took me till 4am today to look at it for the first time. I'm sore but I'm free.
2 days!
After sitting here with colon spasms for the last half hour all I can say is I am beyond excited for my surgery and I can't believe it's only two days away and my last 6 years of suffering will be over.
Kayaking at half moon cay and the beautiful beaches, even a week before surgery and I can do anything āŗļø
Her Crohn's has left her with an ileostomy bag, no large intestine, colon, rectum, anus or inner thigh muscles.
this is trending right now and i am honored to have such a confident girl represent and bring awareness to our illness <3
Last infusion ever!!
Currently here and so bored but it's my last infusion ever! Been doing this since 13 with on and off remicade and vedolizumab and finally I never have to do this again
Sleep has just not been happening for me lately and it sucks. It's 5am right now I haven't slept and I have to be up at 6am to drive two hours to chop for my last Vedo infusion.... Ugh.
what i wish my professors understood: being chronically ill means every class i go to is a class i am going to while sick. imagine a student who had the flu every single week and still made it to class most of the time. you would probably be impressed. but you canāt see my illness, so you just think iām lazy. you think i need to āmake smarter choices.ā you tell students to wash their hands and eat right so they donāt get sick and wonāt miss class, but iām already sick every single week.
This disease has a funny way of making you constantly think about the future. Wondering whether or not youāre going to end up doing what you love or settling for something because itās easier on you. And thatās the scary part ā settling.Ā
āi shouldnāt eat thisā I say as I shove it into my mouth
Oh and I'm also spending my last two weeks with a colon on my first ever cruise so we are gonna have a nice farewell together.
Yesterday I met with the Stoma nurse and got all my questions answered and plans made. I officially have the mark on my body where my Stoma will be and I am anxious to get the surgery done so I can live my life. I fear how I will react when I wake up but I guess Iāll just let myself process it when it happens.
lol what is sleep? Itās currently 4:19am, my stomach is keeping me up for the like 5th night in a row. I took melatonin and Iām still up.. what is this. Oh and I had to start going back up to 30mg of prednisone yesterday, either that or hospital since Iāve been bleeding for over a week. This Wednesday is finally when I get the date for my surgery!
