It actually took me awhile to respond because I just have to think about this stuff all the time and I sorta get sick of associating with it more than I have to. This is going to be long as many of these responses are and im going to stick to generalities and give multiple paragraph parts.
Most all of this is with my wife and I want to begin with a bit of the generational perspective. He father was a boomer and one of those curmudgeonly misogynists that folks may have known in their lives. Now he was a single income provider but he talked about how originally, before they controlled for it, double income folks were both had insurance could put in for reimbursement from both providers. So like 80% back from both and folks could basically scam a profit from their healthcare costs and get 60% of it keep. I bring this up just to get a feel for how much things have changed.
So we have some idea that doctors have told him that she a variety of things that should be looked into as she grew up but she was a child and is not sure what all those were but she did know her father did not want the expense so did not follow up. This was a man that had enough to pay for college for his kids if he wanted but didn’t (her grades were very good btw) and to boot he kept listing her as a dependent after she moved out and she was to mousey (its not quite the right word but its a thing with how he was and how she was raised and how her brain reacted to it). This is just more setup for her life.
So my generation had this thing called insurance roulete which meant you did not have insurance and hoped for the best. Pretty much everyone did that after their parents unless they got a job with insurance because what you could get would be emergency only. During the time before we got together she was in a bad auto accident with a truck where her car was accordianed. In some ways it is amazing she outwardly for a time did not show much damage but there was damage. She also suffered some brutal assaults. Each time she really got just minimum care mostly at home and relied on just being able to get over it.
Now we get to the erra where we met and eventually got married. She now has insurance from my work but many, many issues. Eventually we resign ourselves to paying maximum out of pocket every year. I am in a weird situation which is very akin to being a single parent with a disabled child. She can do some house work and such but is limited. I am desperately afraid to lose insurance. She has gotten mad at me for things like as she says “stepping over her while laying messed up on the floor to go to work”. She later apologizes because she does get that I can’t lose my jobs even though I do ultimately (generational reality of serial employment/unemployment). These things come back around as her and I go through continous bouts of depression around her health, the us healthcare system we deal with, and our financials. We have to kill ourselves with belt tightening to keep cobra going (a costly option to keep insurance between jobs in the US). We have had multiple denials that we have fought successfully but it has taken over a year of perseverance and is a source of continous stress. These are six figure amounts. Obama care was huge because of getting rid of pre-existing conditions and the biden administration’s no surprise billing has been a godsend to. Im currently unemployed and my monthly healthcare costs are over 2k a month now. An amount that unemployment just barely covers so pretty much all other costs come from savings.
Ok as for her health issues. She needs back surgery. Both lower and upper. This is a big thing but we have avoided it. We know it has to be done but what you have to realize is all her medical things have never gone typically. She almost always has “complications”. This surgery is one that people will say don’t do it till you are in a wheelchair because it at its best is not great. This is one of those things we have over our heads. She has had a knee re-alignment. It never went back to normal function. She had a hip replacement with two or three revisions. I can’t remember how many but she had mersa and a pick line and it was enough to have the CDC involved in the middle of covid. Her other hip needs to be replaced but we are putting it off. She had growths in her uterus and got an abilation. They are currently doing biospsies to see if more needs to be done now which is years later. She has a growth on her thyroid and is hypothyroid and has to take thyroid supplement but she reacts to the artificial and we have to continually get exceptions to get animal sourced. [I am at the character length and will have to continue this on a reply to itself.]
She had a tumor on the membrane that surrounds the brain. It was taken out surgically. Initially they were going to do it really minimally but they found it was grown into her skull and had to cut it out and giver her a metal plate. Later some came back and they did this thing called a gamma knife because the physical surgery had resulted in bleeding in the head. Its an acceptable amount so they have not gone back in. We have learned a lot about acceptable amounts of things. She has allergies and is trying shots after years of using over the counters. She has had trouble sleeping and some studies shows she stopped breathing at night but it was close to the cutoff for acceptable amount (eyup). She had a procedure to make more space in her nasal cavity but she had complications and went to the emergency room. She now has a cpap now and according to it she now just has a couple of stop breathing occurences in the night. Im likely forgetting things and there are others that we have not tackled. You see me mentioning holding off and that is because we have to make decisions about what is most important to tackle. Its a fact of life for us. She has neurapathy and goes regularly to a chiro that helps with that and some of her other things. Insurance does not cover PRP but it works for her so we pay for that out of pocket mostly for her knee which I mentioned the surgery did not bring her back to normal on. Ironically we pay to prevent the insurance from having to pay for a far more expensive surgery. They will cover injecting other things into the knee but only if a drug company makes it. My wife can function for a limited time span. She has to stay in bed and she can be out for an hour if she gets back and no issues. two hours and she sorta has to recover. More hours and the recovery will take longer and if she pushes herself to hard (which I continually try to get her not to do but she can be stubborn) it will be days. Outside of laying down she can’t do anything else for two long. sit to long, stand to long, walk to long. When she is up she needs to keep her activity varied. Our vehicle we have bought because of how well it works for her sitting (she can sit in some chairs longer than others and she can stand longer if she has a pad and such) and for her to get into and out of the vehicle. Its a dodge grand caravan and unfortunately dodge has replaced it with the pacifica and those chairs are not as good so we have yet to locate an eventual new best option. If we do a surgery she will be much worse and I will have to care for her more but at the same time my time off is limited and I can’t lose my job/insurance.
Ok sorta a final thing but again you see our hold off thing. TV shows love to display this fantasy in medicine were the doctors realize all these things have an underlying issue that they nerd out on an investigate the mystery and find it and solve it and now the patient is ok. Nothing could be further from the truth. The insurance companies will only compensate for specific things and they can only spend a limited amout of time on it. This means that every symptom basically has to be dealt with separately and any type of holistic care is out the window. This is why we have to decide at each point in time what to tackle. My wife spends most of her time trying to figure out what to do given the system we are in. I spend a fair amount helping her when needed but much more often than that dealing with the finances around the healthcare. We sorta split dealing with authorizations and denails and such. She was suffocating in her sleep and the cpap seems to have alleviated that so she is getting her uterus biopsy and once that is dealt with we will likely go back to. back or hip. back or hip. Meanwhile btw I am aging and I try my best not to neglect my health but its not easy to do what im supposed to do. Im not blowing it off but I know I don’t do it was well as I should and I know we are absolutely screwed if I go down.
This is the reality of the us healthcare system.
