The rheumatologist I saw today doesn’t think it’s lupus, she’s thinks it is CRPS. Fun. Nothing like a strange disorder with no understanding of what it happens to brighten a girl’s day.
On top of that good news, my husband found out at work that our health insurance is doubling next year. Not only is it going to be $1,600 amonth to cover both of us, but the deductible went up, the out of pocket went up, my copays are going to be higher.
Essentially, United Healthcare doesn’t believe it is making enough profit off me. They probably aren’t, but like my husband hasn’t been to the doctor since he caught fire at work over a year ago. So his premiums are just going straight into their pockets and worker’s comp paid for all those bills.
This is the shitty part of the health care in the US. I can’t do anything about the fact that I might have lupus or CRPS or MS or another disabling and debilitating disease or disorder. Hell, medicine doesn’t even understand why CRPS happens. I asked the doctor today if there was really I could do about the CRPS… if I remove all caffeine for instance, will that help? Nope. Quitting smoking won’t affect it either. I already eat less than 1,000 calories a day, I’m fat because I like soda and I’m constantly thirsty because I have Sjogren’s, not because I don’t eat healthy.
I feel like I am being penalized for having bad genes. Things I can’t control. Things that I can’t change. Things that even my parents couldn’t control.
Yes, I’m sickly so I should pay a little more than my husband who has used his health insurance once in 9 years because he got flu. However, I shouldn’t have to pay for someone’s fucking yacht because I’m a little sicker than my husband and my husband shouldn’t be paying for someone’s fucking yacht because he has insurance he doesn’t use.
As someone who is technically among the middle class, I feel like I can’t afford to be healthy or see the doctors I need to just live. I can’t even begin to imagine what it is like for low income people who don’t qualify for assistance. In the last four months, my quality of life has crashed. I feel trapped by my injury/illness/whatever the hell it is… the vicodin is the only thing keeping me sane at this point.
I hate to say that because I’m not a huge fan of opioid use, but I can’t continue to live in pain to the point where walking down the hall makes me want to cry. And it’s only been four months… What happens when it’s been four years? Or my insurance premiums continue to rise to the point where I can’t afford them and I can’t afford to go to the doctor without them?
I’m worried enough about this being a chronic, intolerable pain condition enough that I have offered to let my husband out of the marriage with no hard feelings. I’m not me when I have to deal with pain like this all the time and I know it. I’m crankier. I don’t want to do things I love. I don’t want to be most days.
Making care and treatment unaffordable and unavailable doesn’t help. When I was at the rheumatologist’s office, I noticed a sign hung up in the patient room. Patients with chronic pain conditions that have been on opioids will no longer be able to get refills for more than 10 pills in any 30 day period. Where does that leave people? I can’t take NSAIDS or corticosteriods orally. I can’t really take Tramadol effectively. Which means my quality of life will just have to remain zero if opioids are the only effective treatment for my pain. I know I’m not the only person on the planet with these problems. Plenty of people can’t take NSAIDS or prednisone… So we’ll just all have to live in pain if those are our only options.
We didn’t create the opioid crisis, pharmaceutical companies by offering incentives to doctors who prescribed them often. And by not trying to find alternatives. However, it’s patients that suffer and we suffer even more because our insurance isn’t going to pay for expensive meds like Humira. Hell, my current insurance will only pay for Sumatriptan migraine medicine, which makes me feel like I’m having a heart attack. Any other prescribed migraine meds cost me hundreds of dollars per dose. So I take one that’s addictive: butalbital – if you were doing fun drugs in the 1960s and 1970s, you’ll recognize it as a barbiturate or a downer.
Sorry, I’m ranting. I’m just frustrated and scared. I’m so tired of being treated like a non-human being by insurance companies, the government, and pharmaceutical companies, that I want to give up at times. I feel subhuman because of my genetic make-up…
Good news is, the donation someone gave me to start my Scentsy business has been used to start my Scentsy business and I’ve already started making money.
Hadena James 
Healthcare is a business and they run it like a monopoly – because they can. It’s hard to believe that at one time people became doctors to help others…now it’s a way to get rich. Yes..we can certainly blame insurance companies because they are greedy and have greedy shareholders…but let’s not forget the doctors who keep medical school costs up, keep enrollment limited, and limit the number of approved medical schools small so they can get rich off their fellow man. I pretty much look at anyone in the medical profession these days as a slick oil salesman with no morals or souls.
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Let’s face it – health care should not be a for profit industry. I know socialism is a scary word, but the US needs socialized health care. No one should worry if they can afford to survive an illness or accident or genetic condition. Sorry, just my humble Canadian opinion
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I believe in socialist programs to help citizens.
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Hon, All U can say is I saw the medical crash even as he signed the silly thing and have watched patient care crash because of it. Having MS at the time didn’t thrill me now just managing day to day I understand you very well. I can tell you that you will always question the diagnosis, and treatments that make it worse Dr’s will insist you continue on..Ray of sunshine I know you will get to the point you find a doc that listens to you, and agrees to work with you rather then by the book they are rare but worth ever penny. You will learn what symptoms are bad what can be ignored and what you just have to suffer thru. I know not what you want to hear just what 20+ yrs searching then told MS then 10 yrs later nephropathy.. duh… I could have saved money just taking the lpn to md and figured it on my own.. There is no real cure or full treatment, just know high steroids need avoiding they can cause arthritis and diabetes…if you start having strange thoughts call the doc and wean off asap. if they try lyrica and your vision has spots stop immediately. Unless you want to read on font adjustable devices…be prepared for a psych visit while they think you are crazy, just explain you know your body and felt the med was harmful. I could try teaching you for weeks but I won’t, the end is you will learn to deal, when to rest, when to disobey a med that lasts 12 per the bottle when even the md knows it’s 8 hrs max.
god speed and prayers..
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