End of the Line

[jimells]

I read someplace that the number one cause of death for ME/CFS paients is suicide. I expect that will be the outcome of my disease at some point. Right now I can't see any way to survive financially.

The hits just keep on coming, piling up higher and higher until the daily struggle to survive becomes physically impossible. How many times have I heard, "We'd like to help, but there's little we can do..."

Monday I finally quit my part time church custodian job, after struggling to do the work for four years. For the past two weeks I worked a total of six hours. I'm looking at a letter on my desk from the church, dated a few weeks ago, threatening to fire me if my job performance didn't improve. Yes, this is from an alleged Christian church. They are no better than any other greedy capitalist institution, in some ways worse.

After turning in my keys I went to find out about a letter I received last week from the state agency that reluctantly hands out LIHEAP benefits - heating oil for poor people. It turns out the letter means I will have no oil for heat this winter. The oil dealer that I have been using just went out of business, and they took my $1000 benefit with them. The state says they have no backup plan, no provision, no reserve money for this situation. It seems the state in its infinite wisdom sends cash in advance to the oil companies instead of requiring them to submit invoices like any other vendor. So when an oil dealer goes belly up the indigent customers (me) take the hit and the state shrugs its shoulders and the idiot program managers keep getting their pay while poor people freeze.

So now I have no cash income, the oil tank is empty and will stay that way, and I've been told I have to wait another year to get a hearing for Social Security disability, even though it's been 4 years since I first applied.

I went to the state welfare office when the church first threatened to fire me. They told me to go to the Salvation Army, but they don't have any money either. I know, because I played saxophone in the Salvation Army band until last month, when I became too sick to even do that.

Last year after fighting with the state for six months I was approved for Medicaid. Now the state says I'm not disabled anymore, even though I am much, much worse than even a few months ago. I have been fighting this since February, and it will take at least several more months to resolve this.

A recent report claimed there are SIX MILLION people in the U.S. whose only income is food stamps. I don't know how a person can live here with no cash, but it looks like I'm about to find out.

 

[caledonia]

I'm sorry to hear about your situation. I hope some of the following suggestions might be helpful:

If you're getting into dire straits (like getting ready to lose your house), you can contact your congressperson/senator's "constituent services" office and get your hearing date moved up.

Do you have a lawyer, and where are you in the process? If you've already been denied by the judge and are appealing that, you should also have started a new claim.

In most areas, you can call 211 and get information about social services you might qualify for.

You may be able to get meds for free from the drug company. It's income based and the income, at least for the one I was getting, was only 150% of poverty.

 

[Nielk]

Hi Jimels,

First of all welcome to the forum. You have come to the right place for caring, supportive informational help.
This is some predicament you are finding yourself. I can hear the pain and frustration. It is a valid feeling considering your circumstances.
Can you collect unemployment? or short term disability until your medicare kicks in? Besides foodstamps, there is welfare and housing help.
The truth is that I am not so familiar with these services but, I'm sure others here can help you sort it out.
Do you have any family or friends that can help you in the short term?
Do you have a good doctor proving your disability?
I'm sorry I'm bombarding you with questions but, I just want to see what your situation is like.
Does the church realize what your health situation is?
Maybe if they knew, they could help you out.
P;ease let us know how you are doing,
From a caring pwc
Nielk

 

[liquid sky]

So sorry you are in such an impossible situation. Do you have any family or friends that might let you live with them? It sounds like you have explored most options, so I don't know how else to help you. My son is in a similar situation and waiting on a date for SSD hearing. The economy is in a mess and it seems like the social safety net has huge holes in it.

Please look to family if you can. I have to admit that the grinding pain every day has made me think of suicide, but it is not the answer.

 

[I imagine]

Hang in there Jimels. You musn't give up. I'm in a very tricky situation also and God knows I want to just give up often but every now and then something good happens and gives me hope. Let us give you hope. Get a disability lawyer! They don't get paid unless they get disability for you. While it's not right that you should have to do that, it very often works. What are your symptoms?

 

[jimells]

Thanks for all the replies and support. I'll try to answer all your questions, I appreciate the interest.

I don't qualify for unemployment. I've only been working part time for the past four years, my earnings are too low. As with everything else in the so-called 'safety net', the poorest people generally get the smallest benefits. The church knows I'm sick. I told them I had health problems when they hired me. I haven't been able to work more than 10 - 15 hours per week since I started, and lately it's been much less. Individuals in the church are very concerned about me, but the committee that runs things doesn't care about me, just whether the grass is mowed. I'm not kidding. They told me people won't come to the church if the grass is too tall. It's all about getting money in the collection plate. I had no benefits at all, no vacation, sick pay, health or disability insurance, pension, nothing. Not even a Christmas card. Of course the priests are well taken care of. But lowly custodians like me get nothing but criticism.

I have a disability lawyer with a fancy web site which talks a good line, but he's done nothing for me. I've been trying to get a current CD of my Social Security file for several months. A person used to be abeble to get these directly from SSA but not anymore. The request has to come from a third party. The lawyer talks on his website about having electronic access to my file and making CDs for clients. But when I asked his staff about the CD, they had the nerve to tell me the lawyer doesn't have any blank CDs. They must think I'm stupid to buy an excuse like that. Have all the Staples stores in southern Maine closed up shop?

There's no 'welfare' anymore. Bill Clinton destroyed it. If you don't have minor children, there's only food stamps and maybe LIHEAP, which is going to be cut in half this winter. Thank god I have food stamps. I get $200 a month, I can eat OK on that since I only eat meat once a month (I make a beef stew) and I don't eat much processed foods. Potatoes, rice, oatmeal, eggs are still affordable. I used to eat out of the garden all summer but I'm too sick now to have more than a tiny garden.

I live alone in a 20 year old trailer house that sits on my 50 acre farm. I quit farming a long time ago, although my neighbor's sons are thinking about planting it next year. I hope they do - I can't stand to see 20 acres of golden rod and it's quickly going back to bushes. My house is another big problem. I own the land outright (as long as I pay property taxes, of course) but the house is half-owned by my former domestic partner. I came home from my job two years ago to a note on the table. A month later the sheriff showed up with a law suit from her. She wants the court to seize my house and give her all the money. I have a volunteer lawyer but no one has any idea when it will show up on the court docket for trial. And of course the roof is now leaking into the wall and I no longer have the strength to replace the roof, although I have the skills and tools to do the work.

I'm having the woodlot cut right now, so that will give me a little cash, but I'm faced with the choice of having some cash to live on for a while or using most of it to hire someone to replace the roof. And the guy cutting my woodlot is supposed to bring me processed firewood; I'm anxious to see that wood sitting in my dooryard pretty soon.

I called my congresscritter a few months ago about the Social Security disability hearing (the next step is a hearing before an administrative law judge in Portland) but I've heard nothing back from them. I don't have much faith in them either. When I called they made a big deal about how I would have a permission form from them in two days, but it took two weeks for the form to get here from Presque Isle, a distance of about 35 miles.

I've been sick for about eight years and I'm still trying to find adequate medical care and a primary care provider who can do more than try to sell me colonoscopies and cholesterol pills. They scrape the bottom of the barrel to find doctors to work here, and most of the decent ones don't stay. The specialists I've been sent to won't treat me. I guess they don't believe ME/CFS/POTS are real diseases. The endocrinologist I went to wrote that I was "seeking attention" and that all I needed was an antidepressant. The neurologist said I needed to see a rheumatologist. The rheumatologist said I needed to see a neurologist. I'd like to get them all in one room and kick 'em in the ass.

I have met some good doctors, but none of them were in a position to help me. The hand surgeon who fixed my trigger finger did an excellent job and was a genuinely nice guy. Too bad he left. The PA at the sleep clinic talked to me for a long time, believed what I had to say, but they couldn't find anything they could help with.

Someone asked about my symptoms. As far as I can tell (correlation is not causation) my illness started a few months after a bad case of food poisoning. I didn't go to a doctor so it was never treated or confirmed. I am always tired, of course. I wake up sick every morning with a headache and feeling more tired than when I went to bed. Many days I wake up with a bad migraine attack: sensitive to light and sound, feeling sick all over. Every morning I wake up sensitive to light, maybe it's migraine every day?? Sometimes the migraines last three days and the pain is so bad I can't hardly stand it. But I can't have any narcotics, of course, 'cause they are evil. In fact most doctors here won't even take on patients with chronic pain. They actually tell you that when calling about becoming a patient. It is a blatant ADA violation for doctors to discriminate against disabled patients but no one cares.

The worst is if I do too much in one day the next day or two or three I have the worst migraines. Fortunately I don't have the generalized pain many people do. It's mostly confined to my head, neck, eyes.

I also have tinnitus, depression, orthostatic intolerance, possible POTS, and gut problems. I think the OI is better since I started on Dr Cheney's 'homebrew'. I mix salt, 'no salt' salt substitute, magnesium citrate powder (Calm brand) in a liter of water. The lemon juice helps the flavor. I dig real deep and purchased a heart monitor a week ago. It's been quite informative. Sometimes my pulse goes from 55 supine to 105 on standing, although 65 to 95 is more common. I've been telling the doctors about this stuff for two years but they just ignore it. Patients are all idiots and anything they say has to be disregarded unless a blood test confirms it.

The one bright spot is my gut. For years I had IBS-like symptoms. For years I told the doctors about them. For years the doctors ignored them, except for trying to bully me into a colonoscopy. I told them my gut hurt too much already for me to voluntarily subject myself to more pain just because I am over 50 years old. A few months ago I stumbled over something about fructose malabsorbtion and 'bad' bacteria causing bloating and pain and using grapefruit seed extract to control the bacteria. It was like a miracle cure! I used to take 3-4 loperimide almost every day, which doesn't seem like a good idea.

It's been at least 6 weeks since I've taken any loperimide. After less than a week the grapefruit seed extract made huge difference. As long as I don't eat the stuff that bothers me, my gut is now 'cured'! All the high-fructose foods bother me, like raisons, apples, winter squash, tomato sauce. Anything with high-fructose corn syrup will nearly put me in the hospital, it hurts so bad.

Over the years I've been on almost every antidepressant ever made, except for the MAO inhibitors. There is only one that would work for me, but the government is determined to withhold it: a monthly disablity check.

 

[Nielk]

Jimels,

Wow! You really are in a dire predicament. You write so well that reading your post I can almost feel like I'm beside you seeing your experience. I truly feel for you and unfortunately don't have any great ideas for you. I do have very similar symptoms, especially the waking up every day with headaches and sensitivity to sound. I do have a specialist here in NY, but even so, there is not much he can do about many of my symptoms. It did help though when I applied for SSDI. I didn't have a lawyer.
I applied by myself with my doctor filling out the medical forms. SS sent me to their doctor who surprisingly understood M.E. (used to be CFS). I got accepted on the first try which I hear is very unusual. Like you, I suffer every day and am bed bound a lot of the time but I don't have this tremendous financial pressure. My husband is still working so that of course is a big relief for me. I don't know what I would do if I were in your predicament. You didn't mention anything about family or friends, so I assume that there is no help from that end. Are you the sole owner of the farmland? Would it be possible for you to sell it and with the proceeds buy a better habitat condition for yourself? I am very disturbed by your situation and the seemingly lack of solutions. I'm hoping someone else on the forum reading this can come up with some kind of solution.
Wishing you the very best.

 

[caledonia]

Getting firewood stocked up for winter sounds like a good plan. Would selling off some of your acres be possible?

Sounds like it might be time for a new lawyer if you don't trust the current one. In general though, there isn't that much for them to do until right before the hearing.

One good thing that mine did was get documentation that I continued to be disabled while waiting for the hearing. This was accomplished by me seeing my doc every 3 months, and then filling out a form provided by my lawyer that said I was still disabled. My judge said in his report he liked this info the best (I assume because I was still in my 30's and they thought I might recover).

You should let SS know that you are no longer able to work even a part time job.

Your age, especially if you're 55 or older, is in your favor. If you have only a high school education and have only worked manual labor type jobs (not sedentary), even better.

 

[jimells]

Thanks for your kind words about my writing. It's good to know I'm still good for something besides a punching bag for loud-mouthed politicians who insist that poor people are worthless scum who deserve no better than to live in unheated homes, or under a bridge.

I would never sell my land. Not even a square inch. It's all I have. I've owned it for over 30 years and paid off mortgages three times. If I did sell it my creditors would sue and they'd get the money. I defaulted on $30,000 of credit card debt, money that was used to buy the trailer house and do the needed site work. When my partner abandoned me I got stuck with the debt since the accounts were in my name. I refused to consider a conventional loan to finance the trailer house. If I had, my farm would be gone and I'd be living in my pickup, or dead.

If I sold the farm and did manage to keep the money away from creditors, in a few years it would be gone. Then I'd have absolutely nothing and no place to live. One thing that keeps me going is the knowledge that while I'm alive and living here the vultures can't touch it or chop it up into house lots. The lawyers call it 'judgement proof'. If I moved to another residence they'd have it in a minute.

Sometimes I think about the folks who moved here a hundred years ago and cleared this rocky ground using nothing but horses and backs. I owe them something. Actually we all do.

Nielk, I can't believe your disability claim was accepted at the first level. That almost never happens.

In Maine the Disability 'Denial' Service initially turns down almost every claim unless the person can show they will be dead from cancer in a few months. For nearly everybody else, they are trying to out-wait us, hoping we'll give up before they have to pay any money.

I swear, they would spend $1000 to keep a poor person from getting $10. The money they spend to fight me, maybe it would've been enough to pay for useful tests and hire a real doctor so that maybe I wouldn't need disability. But they are not allowed to do that or even think that way. Their budget isn't to help people, it's to deny claims, period.

A good thing did happen to me today, for which I am grateful. An agency called 'Allies' has accepted me as a client. They provide case management services for mentally ill people on Medicaid. They said they can help me find appropriate doctors. I've been asking about case management services for at least two years, at hospitals, my lawyers, social workers, etc. All I ever got was a blank stare. Finally someone referred me to Allies. They seem like very nice people who don't resent the fact that I do my own research. And it's a very small operation. I don't do well with large agencies and their self-serving policies. They make me crazy with their stupid rules that change every day and the cowed employees that are so frightened of breaking a rule that they are unable to help clients, no matter how much they would like to.

I do have friends, they are not much better off financially than I am. My next door neighbor helps me plenty. Last year he gave me all the slab wood from his small saw mill, plus some other wood. All I had to do was haul it and cut it to length. I could do that last year. This year, probably not. I'm tired of going around town with my little tin cup looking for handouts.

I don't have much contact with my family. My mom lives about 5 hours drive from here. I haven't seen her in a few years, the trip is too hard. We do exchange emails regularly. She has a small pension and Social Security. She gets by OK, but certainly can't afford to support me, as if I would ever ask her to.

Anyway, that's my story and I'm sticking to it. I'm surprised anybody believes it. I can't hardly believe it myself. It's like a nightmare that never ends. How could all this stuff happen to one person? And yet, I know there are plenty of people even worse off than I am. I wonder how they get through the day.

 

[Valentijn]

What you're going through really sucks, and I hope you keep fighting it.

The only solution I can think of - we need to change the world.

 

[Nielk]

I'm glad to hear that you got some good news today. Allies accepted you as a client. Hopefully, they will be of help to you.
I admire your pride and courage to keep your land. It would be great if it could be restored into a working farm and bring you income. I guess that's not a possibility now.
Yes, I was very lucky with SSDI but, that's about the only thing that worked smoothly for my in the past 9 years of my illness.I had a private disability plan from work which I applied for. They gave me a very hard time but finally accepted me. Of course, they deduct the amount I was getting from SSDI from their share. After five years , without a warning they dropped me. I fought them for two years. They lied, cheated, paid off "independent examiners" who never saw me to say I was miraculously restored to full health and I can resume my previous full time job. I was so aggravated about all this that it was making me sicker.
I have seeked out all kinds of medical and alternative treatments throughout the years but, nothing has given me a sustained relief. As a matter of fact. I am feeling worse today then when I first got sick.
Of course we believe your story. Who would make a story like this up. Unfortunately it's not a unique situation. So many people are in the same boat. Really struggling and I wish there was an answer for each and everyone of us.
All the best and continued good news.
Nielk

 

[Carrigon]

jimells, are you sure you want to keep that land? There are things you can do. Apply for low income housing through the Housing Authority, move out, you can keep the house and land, but rent it out for income. There are management companies that can deal with the tenants for you for a percentage of the rent. The problem here is, you are trying really hard to hold onto something you can't physically do anymore. Nor can you keep doing it financially. Trust me on this, I've been there. At least do this, call the nearest local Housing Authority, tell them your whole situation, ask them what programs they have that can help you. They have things that no one ever knows about until they really start asking. Also, if you stick tenants on the land, it makes it a thousand times harder for someone to get the land because they have to evict those people. In fact, if you stick disabled people on there, it takes forever for them to evict them.

Most doctors suck, so I can't help you there. But I can tell you this, the more you push with this disease, the worse you will become. You need to get into a much less stressful situation. And if that means moving out, no matter how stubborn you, just do it.

 

[Valentijn]

jimells, are you sure you want to keep that land? There are things you can do. Apply for low income housing through the Housing Authority, move out, you can keep the house and land, but rent it out for income. There are management companies that can deal with the tenants for you for a percentage of the rent. The problem here is, you are trying really hard to hold onto something you can't physically do anymore. Nor can you keep doing it financially. Trust me on this, I've been there. At least do this, call the nearest local Housing Authority, tell them your whole situation, ask them what programs they have that can help you. They have things that no one ever knows about until they really start asking. Also, if you stick tenants on the land, it makes it a thousand times harder for someone to get the land because they have to evict those people. In fact, if you stick disabled people on there, it takes forever for them to evict them.

It sounds like the house and attached land are protected right now only because it is his home. If he moves out, it is no longer his home and the court will allow his creditors to seize the land or take the proceeds from a forced auction. Moving renters in will not stop this ... best case scenario, the renters aren't forced out immediately without notice when the above happens.

If he does leave, he loses the property and gets no money for it. Unless and until he qualifies for real benefits, leaving is a lose-lose proposition, unless there's a homeless shelter in the area he likes the look of. HA's usually have a considerable waiting list, and single males without an acknowledged disability are probably very low on the list.

 

[aquariusgirl]

jim, I could give you the name of a patient advocate who could help you with applying for SSDI.

She charged me $50 an hour. I got approved on appeal using her services.

(i filed on my own first time round.)

PM me if you want her name.

You're right .....the situation is nuts... not you. You are obviously a striver, a worker & I love your spirit. DOn't give up that land. You are entitled to benefits & SSDI now recognises CFIDS as a condition...although realistically speaking.. it's still prob. easier to get appproved.. for depression...& other more common diagnoses.

Good Luck to you.

 

[kurt]

The whole ME/CFS disability situation is just perverse. We have to take our treatments into our own hands and try to get well enough to cope with life while at the same time trying to prove to a skeptical disability doctor and judge that we are too sick to work. What other disease works like this?

jimells sounds like a tough character, living alone on a farm in Maine facing a winter with no heating oil? I'd be a bit discouraged as well, but there is always a way to move ahead. Things just might not go in the directions expected.

Sorry if this is just more venting, I'm in the middle of my 3-year SSDI review and don't have any proof I'm still disabled except the statements of a new doctor who is not a CFS specialist.

jimell, I went through something similar to your situation, had several years of zero income, had to borrow to survive, mounting debts, the only good medical help was unaffordable, etc. When I finally won my SSDI, I decided to sell the house and move to a healthier climate. That was the best choice I ever made health-wise, as it turned out the mold on the east coast was bad for me, a drier climate has really helped make life more tolerable. Probably I will live longer as a result of that move.

Every situation is unique, I'm not giving any specific advice, just saying it is important to keep focused on what is best for our health. That is more important than our possessions, our pride, or our comfort zones. I think we really need to manage our stress levels and life drama, and maintain an open mind as we go through the changes ME/CFS forces on us.

 

[Carrigon]

The whole ME/CFS disability situation is just perverse. We have to take our treatments into our own hands and try to get well enough to cope with life while at the same time trying to prove to a skeptical disability doctor and judge that we are too sick to work. What other disease works like this?

It's so true. And for those that dare to still work even part time through this, they immediately do not believe how sick you really are. They think if you can work part time, then it can't be that bad. That goes for school and any social life, too. I have a friend who is also fighting to get benefits and simply because she has a fiance, they think she can't be that bad. They think it you're well enough to have any kind of a social life, then you can work. Basically, they just want to hear that you can't move off the bed. They don't want to hear you can do anything at all. Nothing. It's very unfair that we are constantly put into the position of having to prove we are sick. No other disease puts people on the spot like that. But us, we have to prove it to the world.

 

[jenbooks]

1) Get tested for lyme disease or consider a trial of cheap generic antibiotics such as doxycycline or amoxicillin and see if you respond by feeling a good deal worse.
2) Offer acre plots out to homesteaders who will garden and give you 1/3 or 1/2 the food. People with RVs that have their own generators and they can dump the black water at a local dump, or people who want to build a small house or tiny cottage or whatever. Fifty acres--why not use it, and have people grow food for you?
3) The wood sounds like a good idea
4) When you get disability you'll get a lot of back pay, look forward to that.
5) Get a space heater, quartz infrared, it uses very little electricity and will keep you very warm with some good wool blankets or a good sleeping bag
6) Consider a fecal transplant--google it. Sounds like gut problems are still an underlying problem
7) Consider you are living in a house with a serious mold problem that could be a major contributor to ill health.

Those are some things you can do. Good luck!

 

[markmc20001]

somebody told me a social worker can help navigate assistance programs if they exist. Hopefully things get better for you soon.

Maybe you can rent out a room? It's not fun having a roomate, but it's not bad if you can find somebody that is compatable. That could pay the taxes and keep food on the table.

Maybe consider Hotpads.com, or craigslist. They are both free. I've always had pretty good luck with craigslist.

 

[markmc20001]

One more thoght. That letter from your church saying your work was not up to par may actually work to your advantage? It is a letter basically documenting you having troubles maintaining your job. That is the kind of stuff SSDI uses to consider if you actually qualify for SSDI I think. I would include a copy with your application, if you haven't already.

 

[aprilk1869]

I get $200 a month, I can eat OK on that since I only eat meat once a month (I make a beef stew) and I don't eat much processed foods. Potatoes, rice, oatmeal, eggs are still affordable. I used to eat out of the garden all summer but I'm too sick now to have more than a tiny garden.

I'm concerned about the lack of meat in your diet. Meat and fish are the best sources of vitamin B12 and a deficiency in B12 can cause many of the symptoms associated with ME.

My dad's been vegetarian for over 20 years and last year he developed peripheral neuropathy, sensitivity to light/touch/sound, insomnia etc. He's made an excellent recovery on Freddd's protocol which involves taking a lot of vitamins and minerals. I understand that not everyone recovers as easily and that these supplements cost quite a lot of money. However if you could eat more foods rich in B12 it might help you. Liver is probably the best source and should be cheap to buy.