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ME/CFS and the Magic of the Canine Factor
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Where Finances and Treatment Cross Swords

Discussion in 'Finances, Work, and Disability' started by Jody, Jul 12, 2009.

  1. Jody

    Jody Senior Member

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    I'm not sure if this is the right place for this thread or not. I guess it can be moved later if it's in the wrong place.

    I am thinking about the fact that most of us -- maybe all of us -- have some types of food issues, sensitivities, allergies, deficiencies, etc. And we, it stands to reason, do better when we can eat the proper foods for us and take the supplements that build health for us. And it also stands to reason that when we can't get those foods and supplements, our health continues to flag.

    And, there are some treatments and therapies that would work for at least some of us but most of us will never get the chance to check them out because we can't afford them.

    With the dismal statistics on CFS people and employment, the question arises, for so many chronic sufferers without employment, without disability, or with only part time employment, how do these needs get met?

    To me this is a huge issue, the answer being -- for many chronics, the needs don't get met. And people stay sick in signicant part because they can't get the food they need.

    I know people who are in good situations, where they are ill but their partner makes a good living, or they have other family that helps them financially.

    I also have heard of people who have ended up homeless due to their chronic condition and the dearth of money they can generate. God help these folks.

    There's people who manage to scrimp and get by, getting their bills paid and being able to maintain the essentials of life.

    And there are people who don't know from day to day or week to week where the money will come from for their bills and their food.

    Food banks are good places. I admire the people who work in them and the efforts that they put out for vulnerable people.

    But, at least in the food banks I know of, the food is mostly devitalized stuff, which isn't even good for the average person. When you think of the specialized diets needed by alot of chronics, it gets ugly.

    Lots of macaroni and cheese, and breads and buns. Canned pork and beans and kidney beans, beefaroni and zoodles. Margarine and vegetable oils (a real bugaboo of mine) and hot dogs and other canned junk food. The "treats" which they provide -- and like I say, I admire their intentions -- are thoughtful but they are cookie mixes, pancake mixes, muffin mixes ... which may raise morale for a minute for someone who hasn't had a treat in awhile, but alot of this stuff is poison for sick folks.

    And don't food banks get alot of sick folks?

    Off my soapbox for a bit.

    This thread is about, how to balance bad finances with better health through foods and supplements, and other therapies that cost money you don't have.
     
  2. Michelle

    Michelle Decennial ME/CFS patient

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    The key for me has been one, making healthy food a priority in my budget and two, taking advantage of as many programs and deductions for which I'm eligible. Being a patient at the county health department has helped connect me to a lot of those programs, in addition to providing me with health care that far surpasses the stereotype of dilapidated public health clinics.

    I'm on SSI and Food Stamps, so needless to say, I have a rather tight budget. Yet I'm also single (at least most of the time as my boyfriend lives in the UK), have Medicaid (i.e. no copays or insurance premiums), do not own a car (can't drive anymore anyway) and don't eat much so I have a lot more flexibility than most people (particularly those with kids), not to mention live in Portland OR, one of the most progressive cities in the country.

    Perhaps it's just that I grew up poor so I learned from an early age how to make a buck go a long way (I routinely did the grocery shopping in high school for a family of 6 on $65 a week), but I actually do manage to eat an almost entirely organic diet. I shop at a local organic food chain (online and pay delivery fee). My grocery bill is between $200-300/month, which is mostly covered by my $200/month in Food Stamps. Since I spend most of my day in bed, I keep my caloric intake pretty low (1300-1500 calories) and am a stickler for paying close attention to serving sizes, which makes food last longer. Most people actually eat two or three portions of a dish in one serving without really realizing it.

    Medicaid covers 20 hours/month of home care and I have my caregiver cook me healthy meals to last a few days at a time. Before starting the Medicaid home care worker program in January, I was...lucky (?) enough to get Meals on Wheels. That, of course, lowered my food bill substantially, but the meals were, um, not the tastiest (except I feel awful complaining because, you know, it's free, hot food). Though their menus are planned out by a nutritionist so they are moderately healthy, if not organic.

    I also spend about $245/month on supplements and acupuncture/massage therapy (my acupuncturist is also a massage therapist and gives me a $10 discount for the one session/month I pay for; my grandma pays for the other two). While I love ProHealth, I've actually found Swanson Vitamins to have better prices on the same supplements (D-ribose is $54 at PH but $30 at Swanson) and a better return policy (PH will refund returns but Swanson will refund returns AND pay for the shipping) which has allowed me to try out more supplements than I might have otherwise. Though only a handful of the many I've tried have helped or worked for more than a few weeks.

    Much of the cost of my supplements and acu/mt is refunded to me in the form of additional Food Stamps (i.e. it's why my benefit is so high) and reduced rent (I live in a HUD building for seniors and the disabled -- a federal program -- and my rent is only 30% of my income) because the supplements and acu/mt are considered "out of pocket medical expenses" reducing what the state and my building consider income. In other words, as far as the state of Oregon and my apartment building are concerned, my income is something like $429/month because of my out of pocket medical expenses rather than the $674 I get in SSI (it's actually a more complicated formula but that's the best I know how to explain it) and my rent and FS reflect the lower figure.

    I also get a LIEAP grant (Low Income Energy Assistance Grant) each winter to help with electricity (this is a federal program administered by the state like food stamps, thus available to anybody who is low-income) and I think my building gets some sort of energy grant as well that is applied to our monthly rent. Which makes my rent really, really low.

    If I didn't have a boyfriend in England for whom having cheap long-distance was a requirement (I use Vonage and get free calls to Western Europe), I could also get a small grant towards my phone bill with the local phone company (also a federal program, I believe).

    There are also several low-cost acupuncture and naturopathic clinics throughout Portland that cost as low as $10/session and at least one will not turn you away if you can't pay (it helps that we have two prestigious Chinese Medicine programs and one of only a few naturopathic colleges in the country). I finally had to break down and get someone in private practice because I needed massage therapy on a regular basis and my health situation is so complicated it was difficult working with students, though I still use the $10 acupuncture clinic next door to me from time to time -- especially as they give me free herbs (though because I'm on Coumadin I'm limited in my ability to utilize Chinese herbal medicine). There's also a free chiropractic clinic here in Portland for people with low-income, though it can take awhile to get an appointment

    I have received boxes from the local food bank in the past and oh god yeah, the food in it was dreadful. I couldn't eat most of it due to various sensitivities and intolerances and gave much of it to my sister who has five kids. If I had more energy I could probably find some places to get free local produce (many communities have Food Not Bombs which serves vegan meals that are often organic), but so far I've been able to meet my food needs reasonably well. But I totally agree that a lot of the food in food banks is terrible for people like us. When I was a kid we used to get food boxes and I hated the canned yams and creamed corn we always got. Now when I'm able to donate food (which, admittedly, isn't too often both due to poverty and being housebound), I try to donate good stuff.

    I know I'm very lucky to have access to the programs I do. I know in a lot of places there is just nothing like what we have here in Portland. Yet it's important for someone to dig around and see what sorts of programs are available in his or her area as well as what sorts of deductions he/she can get to help offset the extra costs that come with this illness.

    There's not a lot of wiggle room in my budget. Frankly, anything over $5 is a major purchase for me. And I don't, of course, have access to antivirals or, say, Ampligen, or even additional testing of my immune system to check for low Natural Killer Cell levels or activated RNase L enzyme as the Oregon Health Plan (our state's version of Medicaid) won't cover treatment for ME/CFS. My doctor doesn't know much about ME/CFS (which I'm slowly trying to change), so there are a lot of treatments I have to just go without until they become standard clinical care. And the really annoying thing is that because I have insurance (which, don't get me wrong, I'm so so lucky to have), I'm not eligible for the free or low cost drug programs the pharmaceutical companies have.

    I guess what I'm trying to say is that there are a few crumbs here and there for people with little money. I think the really big problem is for people who are waiting to be approved for SSI or SSDI and don't have health insurance -- or have SSDI but are in that horrifically silly two-year waiting period. Again, in my town there are a variety of health clinics available. But Portland is the exception. If you're in a rural area, God help you.
     
  3. Cort

    Cort Phoenix Rising Founder

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    What a great post and I'm going to use parts of it in a section called Financial Medicine (Christina Gombar's great title) that she and I are hoping - when we can to put together.

    One of our goals is to attempt to find out what works for different financial scenarios such as

    • Person with assets, unable to work full time (declining income)
    • Person without assets but receiving family support
    • Person without assets dependent on social safety net

    Michelles post is a nice start towards the last one.

    Another part of that section will hopefully deal with work issues; part time jobs (careers) for ME/CFS patients, getting accomodations, etc.

    I'm also going to introduce a kind of Yellow Pages or Craig's List for ME/CFS patients who sell things, offer services, etc. so that the ME/CFS community can support itself as soon as I can figure out how to do it.

    Lots of plans (too many plans!) :)
     
  4. Michelle

    Michelle Decennial ME/CFS patient

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    Portland, OR
    Glad my post was helpful. I finished writing it and thought, oh, I did it again. I got distracted and spent two hours typing away at something that probably is completely irrelevant. (I waste more energy that way!)

    I moderate our Portland CFIDS Association Yahoo Group, which is all the support group we've got at this point since we're all too sick to meet, and I and another member have been keeping a file folder of bookmarks for various social services for our members. As you can imagine, it's very Portland-centric, but some of the programs are federal ones that are dispersed by the state and I'm happy to pass along what I've got.

    Ultimately, the best piece of advice for those on SSI/SSDI is to get in touch with your local county health department as they usually have social workers there that can get you in touch with local social services.
     
  5. Jody

    Jody Senior Member

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    Nope, not irrelevant.

    Really good information. Well done. :)
     
  6. Jody

    Jody Senior Member

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    Michelle,

    Just was looking over your earlier posts again, and feel compelled to add this.

    Don't ever denigrate your attention to detail. It is not a common gift and one to be valued.

    Your forthright manner gets the job done. Very necessary when the subject at hand is chronic illness and finances.
     
  7. Zona

    Zona

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    Cort - yellow pages

    Check this out - http://members.shaw.ca/zs_zone/ . It's a site I started to put together several years back for a group I have for being ill and working from home. It may give you some ideas on what you could do. Mind you it is a very rough site which I never have fleshed out and cleaned up yet! (didn't have enough people selling things to go further with it)

    Or.. an easy way to start out might be to just set up another BB for this purpose and divide it into sections and subsections of types of work? Could also have a help wanted section too :)
     
  8. Jody

    Jody Senior Member

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    Zona,

    What a nifty looking site.

    I haven't clicked on all your shops but I see my niche in the Craft shop, for when I have knitted some scarves and baby clothes. Maybe something in the Bookkeeper's shop.

    I love the little town. I wish it was my little town instead of the pokey one I've got.
     

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