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Feels like I can't cope at all with this and that I'm in a catch-22

User Profile: bebe8
bebe8 Thursday

Hi, I have a disability and chronic illnesses, I'm in my 40s, and I'm from the USA. It feels like I can't cope at all with my illness symptoms. I have had diagnosed chronic illnesses for many years, but in the last month, I developed a new illness, which is still undiagnosed. (I know what happened, but the doctors don't diagnose anything from it. I was injured from a medication that was forced on me: steroids. I have not been the same since getting them. Nearly died. That's another story.)

The issue the steroids caused is spreading and worsening each day. The symptoms change and compile on top of each other. I can't get help at the ER; they just discharge me after taking labs and a CT scan. They won't admit me, and I don't have any doctors that have hospital admission privileges. I have lost so much functionality, and I feel that time is/was of the essence to get diagnosed and treated, to prevent further damage or even death.

To be blunt, I truly feel like I'm in my final month or final few months of life, maybe even less than that. I have lost so much weight. They wouldn't even admit me when I told them I had not eaten in almost a month. A month of no food means I was essentially close to death. So, I tried to sign up for hospice, but I was able to eat the next day and ended up going onto palliative care instead. I still can hardly eat much, but at least I'm eating some. I think I'm getting about 700 calories per day. All through February I got about 100 calories per day, though. I was hardly able to drink and swallow liquids. After 3 days of no liquids you die. I was able to drink some but not enough to sustain life for much longer. Luckily now I can drink again, but not enough. I'm still dehydrated. They would not hydrate me because there's a shortage of saline bags and they have to ration them off. I understand. The bags have to go to their most critical patients, basically those who are literally dying. 

I can't continue to go to the ER because they'll send me home AND I'll end up catching more viruses / infections there. I became very immunocompromised last month, which showed in my labs. 

Anyway, right now, at this very second, I am in such a bad way physically, and I am just in so much pain and agony. The suffering is top level. I am near my max of what my body will handle. :( 
The worst part is that I can't get help at the hospital, as I said. Also, my outpatient doctors would take too long. I told my doctor I could not eat at all and she didn't offer any follow-up. I even told a gastro doctor that. He sent me for one test, for h.pylori. i didn't get the test yet. But it's not just my stomach. I've had issues through my entire body for years, but now there are new issues in the same organs... heart, brain, lungs, legs, arms, basically my entire body! My body is SO weak, and I don't have the strength, nutrients, fat reserves (very emaciated), caloric intake, or wellness to make any progress to at least return back to my baseline. My immune system isn't fighting anything off and I have so many viruses on top of each other as well as strep throat and a UTI spreading to my kidneys. I have bronchitis and getting over Covid, too. My migraines (pre-existing condition) are so severe. I have heart and lung issues (pre-existing). I have so much more... too much to get into here. 

Now I feel like I need to do some spiritual healing, but that's just grasping at straws. I'm a realist. I know what all this means. I'm in my final chapter of life, and it's very apparent. 

Right now I feel like I can't cope, and I don't know what to do about it. I really need the hospital, but I can't go because they send me home, like I said. I will try some guided meditation. :(

2
User Profile: Sunshinexdaisy
Sunshinexdaisy 2 days ago

@bebe8 I’m so sorry you’re going through this. I can’t even imagine how hard it must be, especially when you’re not getting the medical help you need. I also deal with chronic illness, chronic migraines in my case, though it’s nothing compared to what you’re facing. You’re incredibly strong to be enduring all of this. I really hope you find some relief, even if just a little, whether through meditation or something else that helps. You deserve comfort and care. Sending you warmth and strength.


1 reply
User Profile: bebe8
bebe8 OP 2 days ago

Thank you so much. I have daily migraines, and that is my most debilitating condition in some ways. I'm so sorry you have them too. It makes it hard to do anything when we have to sit in the dark and silence. :(

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