How You Get By: The ME/CFS Financial Coping Stories

[Jody]

(This thread was started to give ME/CFS patients a place to communicate what kind of financial hit this disease has imposed and what they do to get by. Among other things it will assist us in getting tips for a "Financial Medicine" section that is being planned for the Phoenix Rising website - Cort)

Money is a huge issue for many chronics. There's not enough.

But it can be really hard to talk about. Lots of emotional baggage. Each of us have our own issues. But maybe we have more in common than we think. And maybe it would be nice to be able to talk about it once in awhile.

So, on the off-chance that this is true for some of you, I am going to start.

Our family has $150 from my brother every month, about $100 - $150 from our daughter Sarah for room and board and her share of the car insurance, and sometimes up to $100 a month from my mother.

One of our daughters, Rachel, moved out with her boyfriend last weekend, so no more room and board but I think it pretty much evens out because she's not doing laundry and using all the hot water in the shower and leaving her lights blazing and her heater or fan roaring anymore. Just two kids at home now.

I made $190 in the last 2 months selling articles to copywriters websites which may or may not be ongoing, so that would be about $400 - $500 a month coming in.

My dad holds the mortgage on our house though we haven't made any payments on it in about 13 yrs so we are okay in that department.

It has been different amounts with somewhat different circumstances over the past 20 yrs since Al first got injured but our average income for years was about $1000 a month. Different country and different economy so to put it in easier to understand terms, we usually had enough to pay bills properly or buy food but not both. So there has always been a constant juggling of money to keep food in the house and utilities on.

I started talking to God about money when I needed it and didn't have it, 20 yrs ago. Somehow we have stayed afloat and the bare essentials have always come, often at the last minute so not a comfortable situation. But we have always managed to keep our heads above water.

Two inheritances (Al's dad and his aunt) in the past few yrs gave us a healthy influx each time, for a couple months of getting bills caught up, house repairs, healthy food etc.

We go to the food bank every 3 wks and I continue to pray in money and food and other needs, and job opportunities. Interestingly enough (at least it is to me ) when I started looking online to write for pay, I began to believe it might be possible for me to earn some income and started praying for, calling in, job opportunities. So I started really expecting for this 3 -4 more months ago and now it it an ongoing expectation. And, ... I started getting paid to write a month and a half ago ... )

Al found different ways to make some money over the years but the last few crippled him again so when he talks about doing it again I tell him to forget it. It is my turn now.

We have a car that Al bought for $500 -- a beater -- that he has been fixing and improving for the last 2 yrs. I have a car, sort of. It's my daughter's car, and she bought it before she actually had her full drivers licence. Long story. Sarah does stuff like that. Anyway I have use of her car alot of the time till she passes her road test, which could happen next week.

I have a cell phone too, because my other daughter Rachel had a special offer from her cell phone company, where she could get a free new phone and give her old one to someone else. So it costs me nothing, as long as I don't go over 100 minutes a month (I might use 10 min. a month )

So. That's all I can think of for now.

Jody

 

[Victoria]

I do not know how you manage - a miracle no less

Hi Jody,

thanks for sharing your financial situtation. It was most generous of you to open up about this very personal situation you constantly strive to get through each month.

After all these years scrimping & paring down to the very least essentials you can manage on, no doubt you have become an expert in counting the coins & juggling the bills.

I am in the (well at least for the moment, it was touch & go re losing my job 3 years ago) fortunate position of having a full time job. But between illnesses, injuries from accidents, surgeries & now FM, the finances are always in the red. My credit cards (2) are at their limits, I am just maintaining the interest payments this year.

I sold my car in Nov 2003 (27 year old car which was unrealiable & couldn't afford to get fixed). Anyway I used to walk everwhere most of the time. Now health only allows me the short walks to work & occasional shopping trips.

I had my home phone (landline) disconnected last December.

My mobile gets a $20 pre-paid voucher once a month. I really only call taxis & short text messages to family. By the way how on earth do CFS/FM people text messages on their mobile phones? This is one task which I find hard. My declining eyesight & ability to press the correct buttons puts me in the preschoolers league, and yet I can type for a fair amount of time - go figure that one.

I have also given up all trials & treatments that cost money. I now depend only on diet and the least number of supplements/calcium & drugs I can possibly manage.

My local doctor who I saw not half an hour ago, bulk bills me to Medicare as he knows I am now so far in debt.

There comes a time in your search for cures/improvement that you have to accept that there is no more plastic card to use, & no more financial resources.

Food wise, I live extremely well (except this month).

How you might ask?

Well (after studying diet & nutrition for about 25 years, herbal medicine & a few other therapies), I am reasonably knowledgable about food.

Earlier this year I sat down & summarised everything I had learnt about food & nutrition, subtracted the foods I am allergic or sensitive to, added in the foods that helped cholesterol, high blood sugar, had high anti-oxidants, boost the immune system & so on.

Then I worked out (sort of roughly) what were the least amount & variety of food I could live on (& not get sick or run down).

Perhaps I buy only about 12-15 food items a week. I never (well almost never) buy processed food out of a supermarket.

Fresh food is so much cheaper than processed. Forget desserts & a wide variety of anything much.

I have even given up my much loved goat cheese.

I rarely, if ever, eat bread or grains, so that cuts out spreads & condiments. I just eat the most basic meat, fish, eggs (3 a week), 2 fruits & steamed vegetables, some nuts & seeds. Alright it can sometimes get boring.

Instead of wonderful big salads with everything imaginable form years ago, it's down to mixed salad greens, cucumber, tomato & red peppers (capsicum) & home made french dressing. My parents supply lemons & occasional green vegetables from their garden. I've even cut out mushrooms which I love.

I am used to a very cold apartment, so I only turn the small heater on at night. If I'm really cold I change into nightware/dressing gown & ugg boots (sheepskin lined ankle slipper/boots). I have been known to turn the stove on in the kitchen while I'm doing the washing up after dinner. Higher electricity bills you say - possibly, but half an hour of a good warm up on your back while washing the dishes (in as hot a water as you can stand) sure does boost the inner heating thermostat for the rest of the evening.

I have two hot water bottles. Sometimes when my back pain is really bad, I put a hot water bottle against my lower back & one on my stomach. It's amazing how warm this is & costs less than a heater.

My 15 minute walk to work makes my heated office stuffy & overheated, but the 15 minute walk home is both refreshing & warms me up for quite a while.

If I lost my job & had to rely on unemployement benefits (or managed to make a case for sickness benefits which I doubt,although my doctor would step up to the board for me), I would lose my apartment & would have to depend on a room with one of my brothers. Unemployment benefits or other would barely pay my rent, let alone food, chemist/health food shop, private health insurance premiums just to name a few expenses. As a single person with no assets or savings, I live month to month. Some months are ok & some months like this month are very lean indeed.

I manage on 1-2 haircuts per year. (one time I had only one haircut in 2 yrs - the ladies at work kept saying "when are you going to get your hair cut, it's getting awfully long". I kept saying I can't lean back at the hairdresser's wash basins with my bad back........). I only buy basic plain toilet paper, the cheapest unscented hand soap etc. I can't wear perfume even if I could afford it. And I never buy paper tissues. If a guest wanted a tissue to blow their nose or something, you have to use toilet paper (or one of my many beautiful cotton hankerchiefs).

I haven't been on holiday for about 18 years. I did spend money on a some great dvds (all sale price of course) when I realised I was too fatigued or in pain to go out some years ago. I've dropped my movie club m/ship, since I get too stiff sitting at the movie theatre.

And I'm good at entertaining myself. My brothers usually pay for me on the rare times we have a family dinner in a restaurant.

I never, ever join a friend for a coffee at a cafe. I never go out to lunch (which maybe 2-3 times a year & then my girlfriend usually pays).

I shop at the Health store where I get member's discount or 2 for the price of one. Last Saturday I couldn't afford organic, so waited until the local market started putting vegetables out at discount prices. This usually starts at around 2.00pm. This is the first time in about 5 months I couldn't afford organic (which I am very fussy about as they taste so much better).

I am super sensitive to chemicals, fertilizers etc. I can eat organic eggs & chicken, but used to find that the cheaper supermarket brands give me tachycardia, dizziness or nausea & some processed foods actually taste metallic to me.

At the weekend I rarely have lunch - that saves a little. I have a late breakfast & early dinner in the evening.

I drink filtered water & chamomile tea (with one strong fresh coffee in the morning to get me going). I've even stopped buying vegies for my juicer. It's too expensive to buy the bulk needed to keep fresh vegetable juicing.

I wear the same clothes to work summer, winter, autumn & spring. Just a cardigan or coat in winter (extra). I don't have t-shirts, shorts, swimsuits or what most people call casual clothes. I don't have "going out" clothes (I never go out anyway). I don't wear dresses. I only have one (very old) handbag.

A good pair of laceup walking shoes, sandals & loafers sit comfortably in my wardrobe. A few pairs of heeled shoes are gathering dust at the back of the wardrobe because I had so much foot pain & tendonitis I can't wear them anyway. The more clothes you've got, the harder it is to decide what to wear.

I usually wear black to work. If you wear brightly coloured clothes, work colleagues notice you've worn the same shirt twice in one week. If you wear mainly black, they just think you've got alot of black clothes - they don't realize that you're actually wearing the same 5 or 6 outfits week after week.

If you think about it, you can really cut back when you have to.

There was a time about 13-14 years ago when I would have dry biscuits for dinner. Lunch was free at work & I always had 2 pieces of fruit each day from the office fruit bowl (free). I can't eat the dairy/grain packed free lunches now, so bring a small lunch from home.

But I applaud you Jody, & all the others who don't have a regular incomes. I cannot imagine how you manage on a day to day basis. Apart form an income (which I could lose very quickly if my health declines again), I do have the benefit of a hard upbringing. If anything broke & you couldn't fix it, you went without. My clothes were made out of my Mother's old dresses, we mainly ate what we grew in the garden or my Mother bottled & preserved from excess summer garden raw ingredients.

I remember my 10th birthday party (the only one I had I think). Everything was handmade by my Mother including all sorts of lollies & handmade bags to give them in.

Yes, being poor does give you great imagination & resourcefulness.

Victoria

 

[Cort]

Barter skills for healthcare

(moved this post from another section)

JenBooks replied

Take an inventory of your skills--what you would get paid for if healthy. Specialized skills. Then also nonspecialized skills (clerical, computer, website building, whatever).

Look around you at what you want and need that you can't pay for. Lymphatic massage? Chiropractic? Holistic care? Naturopathic care? Suggest to practitioners a barter agreement. Some will be open to it and you will end up getting some of the treatments that benefit you and that you can't afford otherwise.

 

[Cort]

Like most people my financial situation is kind of complex. I'm very lucky in that I have a family which has never questioned the legitimacy of my illness and particularly in having a father who has been willing throughout to help me financially and has been incredibly supportive. I don't know where I would be without him but I imagine it would be a not very nice place.

Basically what this means is that I am 'secure' - I have a place to go, no worries about 'Making the Rent' or other such things, and I'm covered with regards to emergencies.

Nuts and Bolts: Here's how I get by in the most basic of terms; car insurance and catastrophic health insurance is paid for by my father; aside from that I live on $800 a month that he provides. I rely on him and my sister for lodging. Since I can't tolerate sleeping inside either place (and there's no room in one anyway) I either sleep outside or - since I can't tolerate that in one location - I sleep in my truck (which was provided by you know who).

I also get above $50 a month in revenue from ads on the website; probably $75 a month in donations and $100 a month as a moderator for the chronic pain site in Health Central.

Somehow $1000 or so a month disappears really quickly. Honestly I don't know where it all goes; I spend about $350 a month on food - which just shocks me. I do know that a single filling at the dentist costs $350, somehow I've managed to spend about $60 a month in Vet bills over the past year. I also send the CFIDS Association of America $40 a month. I

With the extra revenue from the website money is not so tight; before I had to be quite careful about my spending on food, etc. and I regularly cut it very close at the end of the month. Now every once in a while I feel okay about buying a sandwich out or something like that.

Few Big Ticket Items: I have little money for 'big things' like seeing a doctor. It's interesting to me that I'm not that far away from being able to do things like that -just a couple hundred dollars more a month - but I've been kind of hovering in this 'just getting by mode' for several decades. At one point in the last year or so I had several small jobs and was making about six hundred and fifty extra dollars a month and the money was just piling up! Unfortunately that's over with. Anyway my basic needs are taken care of but anything extra is problematic

So I'm not stressed by money problems like I was and I have 'backup' in the form of my father - whom I try to tax as little as possible. I live in nice neighborhoods - there's very little crime, visually it's very nice. I've really been very lucky - I can see how easily it could have gone another way - stuck in some rotten environment in poor housing, etc.

Long term - Unfortunately I've had chronic fatigue syndrome since 1980; I only briefly worked at a full-time job and I never worked at more than a menial job at the bottom of the pay scale - so my retirement benefits are almost nil.

 

[Jody]

Victoria,

It sounds like you have learned to be very frugal, and to make it work fairly well for yourself. That is good to know.

You have it almost down to a science.

I think it would be very difficult to manage with this type of illness on one's own. I don't know if I would be able to do it. My hat's off to you.

 

[Jody]

Cort,

I'm glad you have such support from your family.

At the location where you sleep outside, I'm trying to picture this. Are you in any kind of shelter, a tent maybe, or ... a tree house? (Alot of kids would envy that arrangement) Or ... ?

Financial support is great but it must be very frustrating not to be able to be inside much. Or is that improving for you, being inside?

Big money can disappear fast, even when living very cheaply. I just borrowed $900 from my dad today for some bills I couldn't take care of, and it is gone ... keeps the electricity on, etc. though.

I know what you mean about being "this close" to being able to live a more comfortable, and progressive, existence. It has seemed odd to me that I have been able to survive on seeming vapours for so many years ... but that most of the time, I just can't get ... over that hump ... There's enough to live, but not enough to live healthy, or to be able to build a better life.

We've had 3 or 4 time periods, about 2 months at a time in the past couple years, where we had a lump sum to work with. If we just paid for bare essentials to eke by, the money would have lasted maybe 4 or 5 months. But that would have meant, repairs on the house that were really needed, dental work, getting some supplements, and buying really healthy food and lots of it, would just never happen.

So we took a big breath, and spent a thousand here, a few hundred there, on things that needed doing ... knowing all the while we would run out all the faster.

But we'd already learned what happens when you let the big stuff go, in order to make the "little" stuff stretch(ie., bills paid and a bare minimum of food in the house). And that is where rotting roofs, and rotten teeth and declining health begin to take over.

I will say, during those 2-month hiatuses, when we had more than enough to live on and didn't have to worry from week to week about paying our bills, these were time periods where my poor health began to really improve. And where I'm at now, getting closer to real recovery, is due in large measure to those times.

 

[jenbooks]

My expenses are exorbitant as I live in NYC. Rents are astronomical and nobody who doesn't live here would believe it; taxes are extremely high (city and state), even a crappy bare bones HMO policy without Rx is expensive, holistic care is sky high, transportation and tolls are extremely high--its probably the highest cost of living in the country. I have no family assistance. I don't know how I've pulled it off since getting lyme in the summer of 2000 and I have had periods of high anxiety.

Cort spoke about sleep--I've had alternately okay and then extremely disturbed sleep off and on for several years. Much of it is related to various health issues. For instance at some point I became unable to wear earplugs anymore because of chronic sinus issues that developed downstream of lyme. I always relied on those to blot out ambient noise (pipe noise in winter, garbage trucks at 6 am, motorcyclists, traffic, sirens). I'm a light sleeper. Instead I use THREE sound machines--one across the room and two near me, which allows me to sleep thru traffic and motorcycles but not garbage trucks and not very well through pipes in the wall cracking in winter from heating. This is an old building.

I also had some severe asthma last winter, and caught a bad cough/cold going around that many in my doc's office had for 2-3 weeks. This spring/summer I had what seemed a bout of interstitial cystitis triggered by drinking raw cultured milk; it is finally (praying!) much improved using tiny "sprinkle" amounts of diflucan that I ground with a mortar and pestle. During these acute/chronic health crises, sleep can be very perturbed.

There are many nights as a result I basically didn't sleep. When I don't sleep I can't perform my work effectively and I lie around utterly exhausted and frayed. When symptoms improve then I sleep and feel much better. But I'm anxious as over the 9 years I've had lyme, though some things stayed the same or improved, these other "add on" problems like sinus or wheezing or bladder, really can cause me problems with sleeping, and I can't always easily wake and fall back asleep. Maybe the underlying anxiety, or else just the fact that sleep is a problem in these conditions *and* you sleep better when you exercise well, and my only exercise is walking, I don't do vigorous sweaty workouts etc. So for earning a living, my main issue is sleep. If symptoms interrupt sleep, then I can't work well. If I can't work efficiently, I really worry. I've been really lucky so far to pull it off. I've managed to meet deadlines. Now this month, is a "free" month...except for one project I promised someone and have done half of, and I could either seek a new paid assignment now...or try to be creative and come up with a completely new project on spec. The latter is what I plan to do but I had hoped to start Aug 1 and it's already Aug 7 and in my mind, it's August that I have allotted for this. But the creative process has its own flow. I also have to get a wisdom tooth pulled probably in Sept...after I get a new batch of my high potency allicin...and I'm worried a little about the expense but more about whether I will tolerate it okay or it will put me down for a while.

MCS also makes my life much more expensive as I only tolerate high end silk, wool, cotton; very pure products all of which are more expensive whether shampoos or lotions or toothpaste or any such thing...and the purest highest quality food. I couldn't go to a food bank I don't think (as Jody does). I can't tolerate canned or processed food--I get sicker from it. So I buy the most expensive stuff: organic (which even then is not always what it's cracked up to be, as the industry has gotten corrupted and the guy behind "QAI" organic has admitted rules are meant to be broken), local organic and natural farmers, Amish farm meat (expensive and incredible) etc. Whereas a dozen regular eggs might be $1.99, Amish eggs are $4.50. But they are from chickens who run free in moveable coops and eat a great diet. The shells are hard, the yolks a deep rich color...Whereas Goya bag of beans is $1.29, organic local beans are $3.00. Whereas some cheap big bottle of lotion has scents and chemicals...organic extra virgin coconut oil (I use as a lotion) is 4x the price etc etc.

And the time wasted--time I could be earning a living--trying and eventually finding things to help the MCS. I cannot tell you how many portable washing machines I went thru with my poor boyfriend fetching them, bringing them here, and my sniffing and saying, Nope. Haier is toxic. Some had fabric softener I discovered was toxic. Finally I discovered this teeny portable that does 2 pounds of clothing called an Eco Egg. It doesn't spin dry. I hang stuff on a drying rack. When I started using this and stopped using the downstairs laundry machines, some symptoms of skin burning and odd twitches went away. However, Eco Eggs are delicate and break and Avanti stopped making them so I always keep a spare. No kidding. I've had two break on me already.

Or trying to get nontoxic sandals. Zappos loves me and made me VIP because I ordered and sent back so many pairs of sandals. I'd open the box and 3/4 of them would be so toxic. Finally I found sandals from Patagonia that were great. So I ordered three pairs. You may think well that's not necessary! But it is. Sandals wear out especially on NYC pavement. They'll stop making this model. So with 3 pairs I should be good for at least five years. Maybe longer, maybe 8 who knows. But everything is like this. So MCS is time consuming and thus expensive, and most of the products that are less toxic are also somewhat expensive. A cheap polyester pillow is $8, right? I can't sleep on it. An organic wool pillow is $70. No chemicals so I can tolerate it. Regular tap water? Tastes like chlorine. So I get shower and faucet filters. All these things are revolving recurring expenses.

I don't go to movies anymore tho, don't eat out unless someone else is paying, haven't taken trips to other parts of the country in a # of years, so I basically live a VERY simple life. Also my boyfriend does 90% of the food shopping which eases things up a lot, as if I'm tired and not feeling well I don't have to go out into crowded city streets to get food. If I feel good then I like to do those errands myself.

I was inspired by the first postings to try and figure out what else I could save on but it's not that much. I called Verizon and they agreed to lower my bill $10/month for my landline/internet package. And I have only the cheapest cable tv because without any you can't get any channels even network. But it's $25 a month so I'm going to return my cable box and hook the cable directly to the tv so that'll save $7 month. The last time I watched tv was when Obama was elected. I almost never watch tv anyway. I do buy books; library books can be moldy, and I've learned a lot int he last few years about limiting any exposures my body wouldn't like.

Also, things break. My hyperbaric chamber required an expensive replacement--$7000. I pay for homeowners insurance only because of the chamber. One of my computers finally bit the dust. Headsets for the phone eventually break. There are all kinds of expenses associated with working from home and machines do break.

All in all, I figure it's better to be lucky than good, and best to be lucky and good. But you can be good and unlucky...should you prepare at a young age for possible disasters? IE go into a lucrative profession and carefully save money (don't invest with Madoff!!!) so that if you DO get some chronic illness you'll have so much money in the bank it won't matter? Well who thinks like that? Harumph.

So all I can do is try to stay calm (not so easy) and turn to my creative self. I told myself August was exactly for that. This has always worked in the past--I generated special projects in addition to regular freelance income. However, the past was a different world. My field is reeling. I've lost regular work, and am often paid late now. So I don't know if I can pull off what I have done before. We shall see .

 

[Jody]

Wow, jen.

What a heavy burden to have to carry, along with MCS.

You have my great respect in being able to carry on.

Food bank food makes me sick but not TOO sick, you know? -- I can mostly handle the setbacks, and when we have decent food it usually makes enough difference for me to be able to bounce back to a certain status quo, at least.

This week there was a lot of rice on the table, so to speak. I'd love to know why it is that if I eat rice, or bread, or buns, that I end up hungrier right after, and during, the eating of it, than I was before I started. Problem with being a carnivore I guess.

I was unsure, when Cort and I discussed starting this type of a thread. I was especially unsure about being the one to write the first post. Felt pretty naked.

In part I guess because I have gotten so used to keeping my finances under wraps. I don't talk about it with many people. Afraid of what they'll think of me I guess, that I am incompetent and irresponsible in not having found some proper way to keep money in my house and take proper care of my family.

And in part because I am sometimes afraid that if I do talk about it that they will want to move away from me -- quickly -- for fear I am going to ask for a handout. Which I am not about to do.

Mind you I've learned with my own brothers that even though they know that I have very little regular income and they know I can't get any type of disability or pension or whatever, that only one of the four of them have ever had it occur to them that they could help me.

One brother has been sending me a little money every month for 2 yrs. Though even that was after our mother basically told him he should. All of them are in a financial position to help if they chose. But the other three prefer to ignore my situation.

So, I no longer worry that people will feel they should help me, if I talk about things. (Usually they don't anyway. ) But like I said, I usually don't talk about it.

I think this thread is maybe a good idea after all. I found it felt ok once I'd written. And it's interesting to see what is happening for other people, how they manage, what they are dealing with. Maybe at some point we will be able to help each other. Who knows.

So jen, you are a freelancer of some kind? I have just gotten a couple of small freelance jobs recently, for the first time. I am not yet able to go out somewhere to work. Fortunately the ol' word machine in my head has come back online just recently and I can write for hours at a time. Nice change.

What type of stuff do you do?

 

[jenbooks]

Hi Jody. I'm just highly sensitive, period--to foods, substances, medicines, chemicals etc. So if I eat, say, canned sardines or tuna I feel really icky. I also don't eat bread because of celiac. In some ways cooking from scratch is easy and cheaper. For instance, even if I buy the fresh local organically grown beans for $3/pound--that makes a lot of beans in the crockpot. Dice up some organic onions, a bit of garlic, add olive oil and its a tasty dish. (Oh, I should add, I also buy stone ground cold pressed olive oil from the Bariani family in California. After I read an article in the New Yorker about the fact that there were olive oil cartels as bad as cocaine cartels, and that much olive oil was adulterated with other oils like sunflower etc, and then green food coloring was added to make it look "real"--I said to myself, Hmmm. That must be why my olive oil in the last few years hasn't tasted right to me. So I researched and found out about Bariani, which is a family business--and the olive oil is really fantastic. The green in fresh olive oil has good nutrients for you. So that's another "expense" as I think it's about 4 times as expensive as cheapo Goya oil or something.) Same goes for baking an organic potato in the toaster oven--and once again adding onions, maybe some parsley, and olive oil. So even high quality produce, if you cook at home, can be a lot cheaper than processed foods. However, wild fish is expensive. And organic greens and fruits are expensive.

Anyway...I rarely found people generous enough to feel compelled by my circumstances to help me out...and certainly not anybody from my own family. So I never worried that people would feel compelled to give me payouts .

We have seriously considered relocating. In Atlanta for instance $26K annually equals $65K in NY (how you can live, what you can get). My bf however is not set up financially at this point to move--he still works in an office 3 days a week and from home 2 so we have to get his work entirely freelance before he can relocate and I'm the organized one who has to push for it and I realize it could take another year. And given my MCS, I know that finding a safe home will be hard to the point of almost impossible but not quite. It would greatly ease stress to have twice the space for 2/3 the cost...and not pay these crazy tolls on every bridge leading out of Manhattan to any borough or New Jersey or Long Island...and not pay such high health insurance premiums, and above all, not pay the insane taxes.

I am a freelance writer--but I come from a tradition of print media--magazines and books. So I have not written for the web. The web is in many ways miraculous and has democratized information and allowed sites like this. But in terms of what print media always provided, I am very worried about the loss of print media and the folding of so many magazines and newspapers (not just for me but for society). In terms of society, good local investigative beat reporting is a skill that's learned in the newsroom, day after day, and newspapers and smart editors letting a reporter pursue a story for a few months...and some local stories eventually become national. Also, the time spent on a good 4000 word print media story, or a series that might win the Pulitzer in a newspaper and could run to 12000 or more words over months--the time to report, and craft, is a skill that I hope our society doesn't lose. Well, as useful as blogging is, it doesn't fill that particular gap. I know if the NY Times charged for their content, I'd pay...I don't know how they're sustaining themselves at this point as they're totally free on the web...anyway, my worry is that for instance a magazine I've been writing for, for at least 8 years, my pay rate is now 1/3rd of what it started out as. That's because they're barely surviving. They also pay 4 months late instead of right on time. Another magazine that still pays very well, pays after 60 days not 30. And book publishers have sliced staffs to survive...and are not paying the kind of advances they used to. Etc. Well I just can't worry too much about it...but I feel worried anyway.

 

[Jody]

jen,

Everything you say about print media is true. I admire your having found a place in it, you must be very good at what you do. It would be beyond my ability.

So I feel fortunate to have found a few places online that will take my writing. If this were an earlier time period, before the new vistas on the internet, I would be toast. As it is, I'm just glad I can make some money here. At the present time, I'm not able to do any other kind of work elsewhere.

 

[jenbooks]

Don't get me wrong. I think the web is great. The problem is it's mainly free, and newspapers have been somewhat destroyed by it (and probably magazines)--they didn't see the future coming. I don't want them to disappear. I want a world with the NY Times and The Huffington Post.

 

[Jody]

jen,

I totally understand what you're saying. The web IS great, but it's having a not-so-great effect on the print media and that's only going to get worse. And you can feel it affecting your income. I'd feel the same way.

The free access to stuff on the net is a double edged sword for me as well in some ways. I'm surprised when I find a place that will pay me to write for them, when so much is free. And, some of the pay is pretty abysmal. One job I have is a penny a word -- $5 for 500 words, with research. For $5? Please. But that's what they pay so that's what I do. The other job is better, $250 for 8 articles a month, on a topic I am interested in.

I hate to see newspapers and other publications downsizing or disappearing because they're being pushed out of business. And it is happening already. It's an artform. What you need to know to be able to write on the net is peanuts compared to the expertise you need to do an excellent job in print. It's an artform that, it's a shame to see it suffer.

By the way, I like your avatar. Tell me about it?

 

[jenbooks]

I think the $250 for 8, considering that you're home anyway and it builds up "clips" for you, that you can use to impress other websites, is good. $250 is something meaningful in terms of income as you live modestly, and it can make a difference for your family.

Google News is a great tool--but basically it gives me all the headlines--and cites whatever newspaper it wants to, and you go online and read it. So except for the NY Times, I don't need any newspapers. As I said, I'd pay for that (more so than for tv!).

I don't actually know what an avatar is but I saw it was a symbol so what you see there is a golden rectangle that makes a logarhythmic spiral. I'm too tired to explain more now as I only slept 3 hours last night. I was sleeping well for a few weeks until last night, when the antifungal that has been helping my bladder is stuffing up my sinuses (probably from die off) and making me cough and that kept me up. Then as I said, when I'm up and upset that I'm up and have these symptoms, my emotions can keep me up. Inevitably I think back to walking in a Connecticut garden 9 years ago and wishing I hadn't or just was a few inches away from that tick...and I get frustrated that I can't seem to have homeostasis, that one thing gets better and then another gets worse. I'm actually trying to get some work done today anyway but its sunny and I want to sit outside a little. So I'm very tired. But if you google logarhythmic spiral you can read about it.

 

[jenbooks]

I thought I would add this link:

http://www.wahm.com/jobs.html

I have NO IDEA if there are any decent at home "gigs" on here.

 

[Victoria]

Jen,
good to hear you're trying to eat organic - I'm convinced it makes an enormous difference to those of us with food/chemical sensitivities.

And while I'm lucky enough to have a full-time job (& take more analgesics & a couple of black coffees to keep it up), I have similar money issues. Many years of injuries, surgeries, tests, specialists, drugs, supplements have contributed to two enormous credit card debts. And while I'm not in a high paying job, if I was healthy, I would be very comfortable & would even be able to save money.

But despite private health insurance & Government Medicare, there's always a big gap to pay myself when I see specilists or go into hospital for surgery. My hospital bills are covered, it's the surgeon, assistant surgeon & anaethetist that charge more than the scheduled fees which my private health does not cover.

The neurosurgeon who did my lower back last year quoted me over $4000, but when I said I couldn't pay, brought it down for me. Even so, after claiming on Medicare (Australia) & private health insurance, I was out of pocket $1300 for just his bill alone. I was also out of pocket for many other associated costs of the surgery.

And as to food................

I try to always buy organic - the benefits outway the cost.

But the last couple of weeks, i've had to resort to bread, margarine & a few non-organics. My Dr asked me last Thursday how I was going with the dairy/grain free diet which I had found so helpful in the past. I had to admit that I had run out of money this month & had to buy bread etc. Perhaps that would account for my exacerbation of pain/fatigue last week. Bread & processed stuff is not good for my symptoms.

I do eat canned salmon (with small salad) for lunch most work days, but stick to a good brand in springwater or olive oil. I never eat the flavoured or mixed canned fish varieties or eat any that contain other oils.

If you haven't already done so, I suggest checking out a few more different brands of canned fish. It's about the only tinned thing I eat & I only eat it for the omega 3 & convenience taking it to work. I also eat fresh salmon a couple of times a week for dinner. Although it's farmed salmon & goodness knows what they feed the salmon, it doesn't seem to have a detrimental effect on me, so I eat it. Salmon, fresh & canned, plus 6000 mg of pure salmon oil capsules per day have brought my cholesterol, tryglicerides & LDL levels down dramatically in only 2 months.

Victoria

 

[jenbooks]

Hi Vic...Victoria in Victoria , I spent some time in Melbourne btw. I really liked it, better than Sydney. Also in the Dandenong hills. I really can't tolerate canned foods and would prefer not to. However sardines, for instance, have all the health benefits of salmon and are cheap. However the bones can be annoying. Recently a local foodie gourmet store had imported Spanish mackerel (fresh) that was delicious and only $4.99 pound. I got it 3 days in a row.

Farmed fish is pretty bad as a regular thing. It has no Omega 3's. It is fed a completely inappropriate diet of corn and soy (at least here) and for instance the farmed salmon would be grey if they didn't put orange dye in its food. And I hear that farmed fish are even fed ground up cow bones. Agribusiness is something to stay away from if you can. Organic chicken is probably healthier than farmed fish. But I'm glad to hear that you can tolerate the canned fish (I'm assuming it's wild?? I hope so).

Now that I know you use toilet paper instead of Kleenex I feel guilty when I buy Softique Kleenex...lol.

 

[Cort]

JenBooks found a good sandals! Have you found other Patagonia models to be safe- or do you think it's just that pair? I have a difficult time finding shoes I can tolerate.

Everybody's cutting pretty darn close to the edge. I empathize with you JenBooks about the demise of print media. It's a real problem - since much of the online media counts on them. It would be horrible if something happened to the New York Times - I can't imagine we're close to that - but my hometown paper the LA Times is a shred of what it used to be.

 

[Jody]

I think the $250 for 8, considering that you're home anyway and it builds up "clips" for you, that you can use to impress other websites, is good. $250 is something meaningful in terms of income as you live modestly, and it can make a difference for your family.

Thanks jen,

Yes, it is a big improvement for us. I'm hopeful that I will find more work online.

It's a good boost in the hope department as well. If this can happen -- so unexpected -- who knows what else can happen?

Thanks for the link you posted as well. I will check it out.

 

[jenbooks]

Sandals...

JenBooks found a good sandals! Have you found other Patagonia models to be safe- or do you think it's just that pair? I have a difficult time finding shoes I can tolerate.

Hi Cort. Actually some are okay and some are not. These sandals were great--you can look on zappos and they describe what each shoe is made of. These were the sandals I got:

http://www.zappos.com/product/7462391/color/101532

The top is pigskin leather and suede--really smelled pretty good! You see they use cork too and stitch around the sole so as not to use adhesives and solvents. Patagonia tries to be very green and healthy. There is some recycled rubber on the sole and that did not bother me.

Then I also bought this other really cool Patagonia shoe:

http://www.zappos.com/product/7462376/color/423

This shoe is basically made out of boiled wool! So like slippers in the house. But you put the rubber outsole and you can wear them outside. For lyme/ME folks whose feet can get achy these are comfy.

I do well with wool, leather, etc.

Debra Dadd recommends Mephisto--I did try them and they smell fine but my feet could not handle their clunky design and it hurt. You can search Mephisto or Patagonia men's shoes/sandals...see what you find. Save them in your shopping cart if you want.

I recommend Zappos, Cort, if your sis or Dad will let you use their charge card (or you have one yourself). They actually LOVE it when you keep ordering and returning shoes. That's their business model. As long as you eventually buy one or two. The shoes are shipped overnight fedex. Each is in their own box so you can smell each individually. What you don't like, you just put back in the box with the return slip and go online, go thru the return process and click off which shoes you are returning, and generate a return label. Its completely free to try shoes, hate them, and return them. Credits are processed quickly. As I said, I returned so many before I found these I felt mortified but they actually made me VIP because they said that's what they want us to do. I guess they know eventually they will put shoe stores out of business.

I recommend Zappos. If you go into a regular shoe store you will have to smell all the vinyl and rubber shoes offgassing and won't even know if a pair is good or bad.

 

[Jody]

Its completely free to try shoes, hate them, and return them. Credits are processed quickly. As I said, I returned so many before I found these I felt mortified but they actually made me VIP because they said that's what they want us to do.

I loved this.