Is getting well about money????

Hi Fresh_Eyes,

I always take all advice/ideas/theories/treatments with a grain of salt. I like to research things and put in my pile of "maybe someday I'll try this". Anytime someone says something really worked well for them I do get excited, but over the years (jumping on a variety of treatments and so called cures) I have learned to be a cautious explorer. Can you imagine being and doing and trying everything everybody suggests? Wears me out just thinking about it!

 

I know, right? There's a post on that at the beginning of the "Stupidest Things People Have Ever Said To You" thread.

 

I had great insurance that covered whatever the doctor ordered for years. And even a visiting nurse that paid for injections. It didn't matter. But now I still have good insurance but the docs I'd like to see are out of state and mainly not taking insurance. My supplements are not that expensive and most have been prescribed for problems over than CFS. My meds are mostly covered. But I WISH I had the money to travel to see other docs and pay for someone to come with me. My energy level the last three years is worse. Yes, I DO think money makes a difference with this disease now. But when I worked for the Crohn's & Colitis Foundation I met one of the wealthiest women in the U.S. with such severe illness that she tried to kill herself; sometimes money doesn't matter. However, that said, I want it now.

 

I seriously doubt that money makes a whole lot of difference for anybody's particular treatment options, since there just aren't any known ones in the absence of a firmer understanding of diagnosis and disease here. But I will say that I often wish I had access to plenty of cash just so that I could choose my own doctors and see specialists without referral. My current cadre of doctors is ok, but when the specialists in particular run a couple of simple tests and then dismiss me, I have just about zero ability to get a referral to somebody else, even if I think the specialist was nuts (as with one who gave me flat-out incorrect information about narcolepsy. Really basic stuff, too -- if he'd just looked it up on friggin' WebMD, he'd have known better.)

Money can't force diagnosis or treatment, but I do really wish I had access to doctors of my choosing. It's not even like I want miracles, I'd just like them to take my symptoms seriously, be honest about what they don't know, and continue trying to figure out both an eventual possible diagnosis and some tries at symptom management for the meantime. Instead, I get the overworked and barely attentive GP, the brand-spankin' new sleep doc who means well but isn't prepared for anything complicated, and the neurologist who confidently tells me things I know to be incorrect.

 

My own personal experience is that money makes all the difference. Any doctor who specializes in our diseases (or claims to) usually don't take insurance and charge $600 an hour or more. The tests alone can cost thousands and thousands of dollars. My illness has cost me my home and and my life-long savings.

I would be happy not seeing any more doctors for a while until more is known about this disease, but if you are on LTD or trying to keep it, you must get a doctor to sign off on your disability every 6 months.

 

Not only money but the ability to physically get to some doctors would make a difference to me.

I know what I have responded favorably to in the past and all of it requires a doctor's prescription and oversight. I have tried just about all the "natural" treatments discussed here and elsewhere with no success.

I recently had a visit with my current doc which I had to pay for out of pocket as he does not take Medicare.

I just received a statement of my out-of-pocket prescription expenses for this past year. I am still reeling from the shock.

There are some other doctors who do take Medicare that I would like to see, but then I am faced with the expense of getting to them.

Last but certainly not least, it's very difficult for me to travel by myself as it takes little to confuse me.

 

Money may not get you well, but the lack of it can keep you sick, or worse. Especially in the U.S., those who don't have any income have to hope they have somewhere to live, and someone to help them. Even if they get SSD, it's not enough to live on if you also have to pay for rent and assistance (or just rent and food... or just food and out-of-pocket medical expenses...). Supplements and alternative treatments which can help stabilize CFS - not even talking about improvement here - are therefore too expensive. And without someone to help you, how will you get to a doctor who will even believe CFS is 'real', and provide the necessary documentation to get any federal relief in the first place? (This ultimately also leaves you far more vulnerable to things like forced psychiatric hospitalization.)

If you don't have anyone to help you and nowhere to live, you're in trouble, especially if you didn't have time to plan for that situation. First of all, you need to be on Medicaid, which has an application process and it usually takes months to get approval. Disability housing is extremely difficult to get if you 'only' have a diagnosis of CFS. It takes time to apply, and you really need a social worker to help you. (Where will you find a free social worker? That's another question.) Even then, you have to be lucky to be accepted into any special 'assisted living' housing... and those tend to be fabulously expensive, so even if you had Medicaid they probably won't pay for it. (Also, assisted living is not for people who require lots of assistance; if you're anywhere close to bedridden, for example, forget it.) Without Medicaid and unless you can find some government program I don't currently know about, you're faced with homelessness. (A hospital social worker recently told me that they recently had to dump a very sick HIV patient out on the street - literally. This was given as an excuse for doing the same to me!)

If you have Medicaid you can get into the nursing home system, but it's not easy and you have to qualify under their criteria of 'disability'. I was 'lucky' that I caught a bunch of severe infections all at once, requiring hospitalization; that was enough to get me into the system. Once you're in, though, it is notoriously difficult to get out. The reason for this is that Medicaid takes all your social security income, which means you have no ability to save up for outside housing (eventually), and definitely not for out-of-pocket medical expenses, the internet, whatever.

The stress of illness is one thing; the additional stress of poverty is another, and is hard to describe for anyone who hasn't experienced it. It is a primal sort of stress, striking at the heart of the survival response; at its worst the stark reality of life-or-death is a constant, looming presence, especially when you are already extremely ill. This combined stress makes it pretty much impossible for one's CFS to even remain stable, let alone improve.

I have seen virtually no mention of these issues in any form on any website or in any CFS literature. The most I ever see mentioned is advice on how to get disability pay. No mention on how you can subsist on that, especially if you don't have anywhere to live or need assistance with the most basic daily tasks of living. For all the misfortune I've had, I'm still lucky; it could be much worse. I wonder how many people are in such situations. If Leonard Jason's studies are accurate, there are probably a great many PWC below the poverty level, most undiagnosed, and of those a good percentage would probably wind up homeless. A fair amount would ultimately die, I would guess.

 

Dr Yes,

I suspect a lot of the homeless people I see on the street in Australia are there because they are sick and despite govt allowances (pitiful amounts) can't afford to keep a roof over their head, food, or clothes on their back. Let alone have money to try 'treatments.' I'd also say that some of them probably end up in psych wards of general public hospitals for just a little while. Australia closed down most of it public psychiatric hospitals some years ago to treat people 'in their homes.' Only they seem to have forgotten that some people don't have homes.

There is public housing but nowhere near enough of it to meet demand.

 

Money makes a difference

I am conviced that money makes a huge difference. I have five people in my family. My oldest son has aspergers, ocd, adhd and tourettes. My husband has allergies and asthma and has been in the hospital on more than one occassion due to pneumonia. Of course, I have CFS and have a doctor that does take my insurance. Although there are many things that are not covered for my son and I, there are also many things that are covered. Without my husband job, insurance and good pay we would be in bad shape. Money has given us opportunities to try treatments that would not have been possible without it. These opportunites have made a huge difference in our lives and I feel grateful everyday. At the same time I worry about my husband losing his job and insurance. This has been our life line.

 

@ Dr Yes: Your post was a bit of a wake-up call for me. Thanks for reminding me how good I have it. I don't have any insurance or any medical care to speak of, but I'm not bedbound and I have a partner and own a home. My heart goes out to everyone in situations where survival is precarious. It's so scary, being physically weak and dependent, even to the extent that I am. Thanks for helping me put things in perspective.