u/derangedmacaque

Hi, my oxygen is good accident initially like 95 but I feel like I have a gorilla sitting on my chest and I am coughing up for the first time and this whole time of having my LS. I am on Mucinex about six times a day and I just actually had a natural cough where I coughed up a chunk of like white gunk, I guess and that made me puke. We’re using the that section every time I have too much in my mouth. I have plenty now I have 24 hour caregivers now I don’t have any family support so I’m just really stressed about how to get back to where my lungs feel normal. It really wasn’t a problem in the hospital a day and a half ago when I got out in the hospital, I started to feel really sick in the ambulance going home. My other theory is that my body is having withdrawal from opiates because I had so much pain in the last two weeks. I’ve been on last nine weeks Have been on morphine oxycodone and when I was in the hospital, I was on Dilaudid so I mean it seems like I guess a little bit better when I take an action going on I just wanted to know when I take an oxycodone it gets a little bit better. I can’t take my morphine because I feel like I will choke on the pill. On Monday, I will let my doctor know. I cannot swallow the exec release morphine anymore and that I need another type of painkiller, but I’m doing OK with the pain as long as I don’t have an infection I can do Tylenol and methocarbamol. Does anybody have any thoughts on these secretions while I break them up with the coughing and get them actually out of my body and have a break from this feeling? Is this my new normal? That’s probably the thing that is freaking me out.

My post history is public, and I just wanted to say to everyone here that I’ve really enjoyed your support and learn a lot from what happened to me which I unfortunately will not be in because I am dying, but I hope that someone else can benefit from my history I get help with they need that because medicine is a long history of terrible things that happens to women and I am very certain that my story is related to the fact that I am gender that is treated like they make up exaggerate lie enjoy attention and etc., and use pain and disability is minimized due to bias. I really hope that you all have a better journey in life than I have had and you can always reach out to me and I would love to be in touch with you please take care of ourselves.

You guys really inspired me I wasn’t sure if I could really do this and even with everything I just got a cancer diagnosis on top of the LS metastatic cancer, but I’m going to fight.

I love you all. I am a fighter and I am a strong person and I get passionate in person. I am going to use everything I have to stay alive.

I am really feeling strong, but at the moment I am actually in the ER waiting to get a room because I pooped massively in my divergent at 11 PM last night and it caused a UTI and vagina and I’m on Dilaudid for pain.

My whole life people have interested in me and I feel like I’m just going to turn the tables on this motherfucking disease and fight with everything I can.

Thank you for being a part of my life ❤️

So I got misdiagnosed with my ALS for two years and now they also missed advanced bladder cancer. This is the premier teaching hospital in my state of Colorado. They found blood clots in my lungs, so I’m on a blood thinner. The clots are probably from the cancer, they said The pulmonologist also ordered a cough assist but I might not get it before I leave the hospital.
It’s really good that I got my feeding tube last week because I came home and I actually started not being able to swallow pills and food so we’re using it for my nutrition and medication. I’m glad I did it.

So far I have gotten on top of having a hospital bed, a custom wheelchair, a shower buddy chair to get me into the shower because I have a shower tub, I got a Hoyer lift, I bought a pure wick and I’m waiting for a second in pure through my insurance whenever the fuck they get that done , and now I have to get the cough assist.

What else is there and then I might need you guys?
ALS United is giving me a communicator iPad this week because I’m already losing my speech.

I am hiring a second caregiver before I get out of the hospital because I need 24 hour coverage or you know like close to 20 hours coverage or something like that because I am pooping at night in my diaper when I have no help and is causing horrendous UTIs

Has anybody dealt with this pooping situation at night and how did you deal with that? I am trying to think of creative solutions to this because of my lymphedema and ALS t and losing the ability to control my pooping, and I’m already in diapers all the time