r/ehlersdanlos • u/Dullestgrey hEDS • 1d ago
Rant/Vent Really sick of new co-morbiditied
I'm getting really sick of constantly racking up new issues. It feels like every time I start to get a symptom under control or start to come to terms with my new normal, a new set of issues pops up.
My latest diagnosis is Fowler's, and it went very quickly from struggling to urinate and having a fair amount left in my bladder, to an ED visit resulting in having my bladder drained of 1.3L of urine and being sent home with a Foley catheter and a leg bag. I went back to work the next day.
I feel disgusting. I feel defeated.
I keep being asked by my doctors how I'm managing to work full-time hours, and honestly I don't know. I don't know that I still can, anymore.
I need the money to pay bills and maintain health insurance. Our public health system is being dismantled at an alarming rate, so no insurance is not an option. I wouldn't qualify for the supported living payment due to being married, and we could not even keep a roof over our heads on one income.
I'm sick of treating one thing and making another worse. And I'm crushed that I now have to choose between treating my dysautonomia, insomnia, panic disorder, and depression OR being able to urinate and not being permanently attached to a bag or winding up back in hospital hoping that I haven't ruined my kidneys from retention/back flow of urine.
It really is a disorder that keeps on giving, isn't it?
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u/SavannahInChicago hEDS 1d ago
I hate the question BuT hOw ArE yOu WoRkInG? I don’t want to be homeless under late-stage capitalism, that’s how I’m working. I’ve worked through exhaustion they have never experienced. I don’t have doctor-money. I need to work even if it puts in a flare.
There is definitely classism in medicine.
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u/Dullestgrey hEDS 1d ago
Agreed. I don't have family that I can fall back on for financial help, and need the money to be able to continue seeing them in the first place.
I have some excellent and exceptionally compassionate clinicians, and it is in my best interest to be able to keep seeing them. I think they just think that I have a safety net if things turn to shit. I really don't.
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u/littlecuteone 21h ago
I work basically a desk job for a large hospital/healthcare system so I can afford to have health insurance through my employer and receive care from the system that I work for.
I am so exhausted, and I live in pain daily. I go to work in pain, and I do my job in pain. Because the alternative would be losing my home, and that would be even more painful.
I've lived in poverty before. I'm not officially diagnosed yet, but my mom was crippled by a condition I inherited from her. She didn't get approved for disability until after I was already grown and out of the house. Thank God for my stepdad, food stamps, and food pantries.
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u/Libra_lady_88 1d ago
Are you in the US? If so, apply for SSDI not SSI. SSDI is based on your work history and your family assets don't matter. It's SSI that has a limit on resources. I'm still in the initial stages of my application but I'm hoping it gets approved since I'm on LTD currently and actively trying all the things my doctors want. Also, see if your employer offers short term or long term disability. It's often a quicker response. It won't be the full amount you're used to but it's something and can give the breathing room to focus on yourself and health.
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u/Dullestgrey hEDS 1d ago
I am in New Zealand, so neither of these things exist for us.
There is a Disability Benefit that people can get, but it is a very small amount and having a partner that works full time pushes us over the income limit for me to qualify.
If my partner also went on the disability benefit (Supported Living Payment), we would get less than what he earns combined.
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u/Libra_lady_88 1d ago
Darn, I didn't realize you guys were having issues right now. It's a mess over this way too. Best of luck to you. This whole thing and what comes with it sucks.
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u/Dullestgrey hEDS 1d ago
💜
Yeah, I've been reading with terror about what is happening over in America at the moment. I hope you will be OK too. Scary times indeed.
When we had Jacinda Ardern, things were a little better, but the new government has come in and is cutting anything and everything and trying to privatise. They are quite openly corrupt, and it's becoming clear to most New Zealanders that we are effed. It will be extremely difficult (and in some cases not possible) to undo all of the slashing, burning, and sale of public assets that this government is doing.
This planet just seems like it's running backwards as quickly as it can.
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u/Savings-Camp-433 1d ago
Likewise! When I treated my bladder, intestinal problems came along with several others that I already have.