My name is Lain. I am a 40 year old single mother. I know you are all super busy so I would do the short version first and for those who want the longer version I will go into that next.
The short version is I have multiple chronic medical conditions and mental conditions which prevent me from having a normal job but I keep getting denied for disability over nitpicking. I’m in the hospital more than I am at home. There was a lapse in my insurance last September. I got it back about 2 weeks later but I ended up in the hospital before I knew my insurance lapsed. Myself in the hospital have tried to do everything to get insurance to back pay but it’s been rejected four times and now it is my duty. It was approximately 13,000 but they have lowered it to just under $8,000 but this is not one of those bills that just magically goes away if I ignore it I also need ongoing dinner. So trying to raise the money to pay the bill Plus upcoming medications I need to survive. That is a short version. Read on if you want more details.
I am a single mother. I have no family or friends support. I have family but they live halfway across the country and they are more of the “thoughts and prayers” type then ones who actually help anybody. I do not get section 8 housing or government cash or child support for any of that. I would if I could.
I work my ass off and I’m not sitting around being lazy. However I have extreme social anxiety. I have physical side effects when in large social situations. I can take maybe two people at a time but a large group I will actually show physical side effects. I also have authority issues due to long-term childhood abuse and assault by more than one workplace boss. I also have extreme time anxiety. Time anxiety means if I have something scheduled, I cannot eat sleep work or function for approximately 3 days before the event. It reacts much like my social anxiety in the physical aspects. There is some relief to this time anxiety such as it doesn’t seem to trigger when my daughter has something scheduled (such is going to school) and it doesn’t appear to trigger if I’m already up and about and out during the day and something comes up where I have to be that same day (which is why going to the hospital is fine because it’s sort of a last-minute decision with no pre-planning and my doctors know that when they have a chance to get me in to not call me until that same day)
These afflictions basically wipe out the majority of general jobs. I can’t have any job with boss or any job that has a preset schedule or any job where I have to work with more than a single person or two. This pretty much makes it so I can only work for myself.
My drunk mother was in an accident when I was a teenager and I got pretty bad brain damage. I spent 3 years relearning how to live and do things for myself. I can take care of myself now but I can’t learn new things. I’ve tried to go back to school twice.
On top of that I have multiple chronic conditions. Asthma which is triggered by heat or cold which means I can’t work outside. I have a chronic splenic cyst that baffles doctors. Spleenic cysts come in one of three forms. Two of them come gradually and have a habit of repeating and those are infectious and parasitic. Then you have blood cyst which come rapidly and are due to trauma.
I have a gradual and repeated blood cyst. These don’t exist. According to every single doctor I have ever seen, I am lying and making it up and they don’t actually exist and I must have just had a recent trauma and I’m lying about that too. Until they look at all of my medical history and do the tests and scans themselves and see indeed I do have a condition in which is so rare not a single one of them has heard about it.
This is a chronic condition which requires repeated treatment. I spent more than decade trying to figure out what is causing it but unfortunately the majority of my time is spent going to appointments to prove to the doctors that it exists in the first place. We have yet to figure out what is causing it. However it constantly needs drained. When it is drained I have a short period where I can take care of myself. However it fills back up again and not only causes excruciating pain but also causes the inability for me to take care of myself. I cannot bend. I cannot sleep properly. The spleen has actually caused a hiatal hernia (it shoved my stomach by force up past my diaphragm and into my esophagus). Every time it gets larger (it gets bigger than my liver since it takes doctors forever to accept it exists and insurance even longer to decide to cover it and consider it necessary to drain), it also decreases the functionality of my liver, pancreas, and has crushed my colon (large intestines) to which now I have bathroom issues I will not describe to gross you out with.
If only this were the end of it. I also have trigeminal neurology. This basically means the nerves on the right side of my head are constantly signaling pain signals. I’m on multiple medications to try to do that down but they can’t just turn off my nerves. This means I am in constant pain all the time even with medication. This is also known as the suicide disease because as time progresses, the condition gets worse and the medication works less to the point people…. Well it has its nickname for a reason.
So I’ve got a lot going on. Despite all of this crap, I desperately try to work hard. However I’m very limited in my jobs so I work between Uber (rideshare) and Amazon Flex (it’s Amazon package delivery but you can pick up blocks on the spot). I also have a side hustle selling things or upcycling things from home to sell.
Unfortunately these jobs pay absolute scrap and put a lot of wear and tear on my vehicle so that is a heavy cost. But due to all my medical conditions and my mental ones, is pretty much all I can do. It’s either do this or sit around and whine that I deserve things.
I’ve attempted to get disability but since nobody’s heard my splynic condition, I’m having trouble using it. It has been advised by an attorney that I start telling doctors to write in the notes how is disabling my life because right now it’s just medical. Doctors don’t tend to write how I feel about my medical issues so I have to see if they would even do that. As for the other one, pain in and of itself does not qualify for disability. Nor do my mental conditions despite how disabling they are. Not because they do not prevent me from doing long-term meaningful employment….
But because all my documentation for the past decade only describes the conditions and not how they interfere with my life. Again doctors don’t tend to write that stuff down. I was told I need at least two to three years of documentation of how it’s affecting my life in a personal journal as well. So that’s two or three years before I can even attempt to apply for disability and I hear it usually takes three to five years to get.
So I have medical insurance at least for the moment. I’m on State medical but under current administration they want to cut that for people like me who need it to survive. In fact they are most likely going to cut it in another 2 months because they randomly switched my renewal up by 6 months which they only do when they want to cut it and deny me. Unfortunately I’m in the hospital and doctor offices a lot. My medication cost about $500 a month. Also my insurance lasped due to their paperwork error and I didn’t know until after I had already gone to the hospital because they didn’t inform me right away. I only knew when the hospital tried to charge them and it came back as denied
Yes I did appeal for the back pay which they are supposed to do for 3 months back. Yes I have proven that it was their paperwork error. Yes I have done everything I am supposed to do but they keep denying it over and over and I’ve been fighting this since September in the hospital finally said it’s my responsibility now to pay
On top of that I have my constant medications. I just can’t afford them. I work and I work and I work but I just can’t get the money
Every time I try to get assistance, I am told by privileged people that I just need to try harder and that mental disabilities aren’t real and then if I was actually in pain I wouldn’t be able to even talk or get out of bed. I’m told that adults don’t have learning disabilities and I’m just making it up. I’m told my conditions aren’t real etc. I’m told if I really wanted money I should just try harder. I’m told I’m making excuses and making things up despite the piles and piles and piles and piles and piles of medical proof. So every time I try to get help I get all these narcissistic people who have everything in life telling me that I’m just leaching from the good Christian people and I should stop making excuses and just go work harder despite the fact that I’m working two full-time jobs and a side hustle.
So I know there’s a lot of fundraiser’s to choose from. And I’ve made fundraiser before probably a dozen times and I haven’t gotten one single donation. I know that’s my own fault because all the people who are getting you know $20,000 for their fifth wedding anniversary or $50,000 for a mommy makeover or whatever they all have connections. They work at a place that has major connections and they got a bunch of friends and they have 10,000 followers on social media they can send it out to and all of this other stuff. So I know it’s my own fault for not having tons of free time to post things on social media and get a bunch of connections
But I still hope. I still try and I still hope. Any little bit will help. I really really appreciate it. Every day I get knocked down by people who telling me I’m just not trying hard enough even though I try a million times harder every day than they ever have in their entire life combined. But that doesn’t mean I don’t need a little bit of help and I appreciate every little bit anybody can give me. Thank you.
