End of the Line

[SickOfSickness]

Post on youtube and link it.

 

[nanonug]

my illness started a few months after a bad case of food poisoning.

Bingo!

I also have tinnitus, depression, orthostatic intolerance, possible POTS, and gut problems. [...] For years I had IBS-like symptoms. [...] A few months ago I stumbled over something about fructose malabsorbtion and 'bad' bacteria causing bloating and pain

Sorry for resurrecting this old thread but it is quite clear in my mind that you have some kind of gut infection. Please, read this thread where I have already provided some info about this problem and how it is associated with CFS. If your problem is what I think it is, it does have a solution!

 

[jimells]

Bingo!

Please, read this thread

Thanks, I will check it out. Recently I was thinking about this thread I started so many months ago. I'm still hanging on; my situation hasn't improved substantially, but it also hasn't gotten much worse. I'm grateful to still have a roof over my head.

 

[roxie60]

Thanks for sharing jimells and not giving in to the horrible stresses you are enduring. It is so hard to not want to just throw in the towel, we are fighting on so many fronts and we are people least able to continue to fight on our own. Sadly we are subject to famiy, friends, co-workers, doctors, medical and political administrations that at minimum seem indifferent to the suffering and sometimes down right incompetent. Sadly we are lumped in with those who are not sick and gaming the system. I am glad to see you made it thru the winter and pray more real help/assistance comes your way. You are very articulate. You describe an experience so many go thru. However, those of us who are primarily alone I think the struggle is exponential sometimes since we get so tired trying with so little results and no one around to boost our resolve and spirits. That is why I am thankful for Phoenix Rising and the people who support it and particpate. I can understand not wanting to give up your unencumbered land....dont stop fighting!

 

[August59]

Hello Jimells - I've just now been looking through this thread and you are not to far off from where I am at. There is one thing that I waant you to look into. Are you still communicating with your Disability Lawyer since you are at the phase of going before the administrative law judge? Do you know whether your case has been accepted by the Law Judges office? Let me know where you are on that!

 

[jimells]

Hello Jimells - Are you still communicating with your Disability Lawyer since you are at the phase of going before the administrative law judge? Do you know whether your case has been accepted by the Law Judges office? Let me know where you are on that!

Hi august, yes the disability lawyer's office still calls me once in a while, but they never tell me anything useful. I can't even get them to review my case file to see if I now have enough medical evidence to support my claim. When they call me it's mostly just to 'glad-hand' and try to convince me that they actually care about winning my claim. So far I'm not convinced.

I've been waiting for an ALJ hearing date for almost a year and a half. No one knows when it might be scheduled. I recently contacted my congresscritter's office for help. They have asked Social Security for an expedited hearing on my behalf due to 'dire need'. 'Hardship' is not enough. One has to be a step away from living on the street to have 'dire need'. If there is a homeless shelter nearby, one does not have 'dire need'. And the media hacks and politicians still have the stones to claim, "THE USA IS THE GREATEST COUNTRY THE UNIVERSE HAS EVER SEEN!!!"

What a crock.

 

[August59]

The "Dire Needs Letter" was what I was curious about. There are a couple of disability forums that have had people get good results with them. The ones that did good made a couple of tips to give a better chance of it working.

1) The person seeking disability should personally write the leader (it can be typed), but it should be in your words.
2) Documentation attached is an absolute must for sucess.
3) After about a week or 10 days call the SS office and ask them if the letter has been received and once they tell you it is received call them every week to see if a hearing has been scheduled.

My representative at my local SS office told that foreclosure, eviction and unable to purchase meds were the strongest documentation you could attach to the letter. She didn't say anything about a shelter at all and she actually worded it to me they are to do eveything possible to keep a disabled person from being forced to leave current living situation.

A lot of times they will not even do a hearing for dire need, but instead will do it based on records only.

http://www.disabilitysecrets.com/tip8.html
http://index.healthboards.com/disabilities/dire-need-letter/1/

Good Luck!! I know I'm going to need it. My foreclosure is getting close

 

[jimells]

Good Luck!! I know I'm going to need it. My foreclosure is getting close

Yes, and the stress of dealing with something like foreclosure is guaranteed to make us sicker. I'm sure you've heard about folks successfully challenging foreclosure because the scumbag criminal bankers can't produce documents to prove who actually owns the loan, and they didn't bother to file proper mortgage deeds with the Registry of Deeds.

I liked the recommendations for the Dire Need Letter. I did hints 1 and 2. I submitted a copy of my tax bill and court documents regarding the lawsuit to seize my trailer house. But I sent the whole package to my congresscritter's office They are supposed to be helping me with the expedited hearing process. The person I'm dealing with mentioned 'On the record' decisions; she sounded like she knew what she was talking about.

Calling the SS office every week sounds like a good idea. I'll have to add it to the 'List of Really Important Things To Do On A Day When I Feel Slightly Better Than Total Crap'. It's a long list.

 

[Vincent]

Hello, I've been through some of what jimells has been with the SSDI through so let me try to help.

Once you win your disability claim it is VERY important that you have your money parked in the SS direct express card. The SS act has been interpreted differently in different states. If creditors have a judgment against you they can, and probably will, attach your bank account, even if it's just SS. You will then have to hire a lawyer and go to court to get your money back, and you may not get all of it. See, in the SS act, it says the 'payment' is exempt from all collections, except government. Courts have defined 'payment' in different ways, some say anything more than 2 months worth of is collectable by creditors:

The rule does not contain any cap on the amount of
benefits that are protected. If the beneficiary received a
lump-sum payment by electronic deposit within the two-
month look-back period, it is protected regardless of its
amount. However, a lump-sum payment that remains un-
spent in an account will lose the rule’s automatic protection
after two months. If a garnishment order arrives, the benefi-
ciary will need to invoke whatever state procedures are avail-
able to protect the remainder of the lump-sum payment.

The direct express card is 'watertight' legally, and can not be touched. When you win your case make sure your funds are put onto the direct express card, and you then transfer the funds you need each month.

I would advise two books to read, Nolo Press How to solve your money problems, and Nolo Press Guide to Getting and Keeping Social Security Benefits.

I have the money problems book in pdf if you need it, I also have the very hard to find pdf from the NCLC that specifically covers the new collections rules regarding social security benefits. I will upload the NCLC report since it's public domain.

 

[jimells]

Once you win your disability claim it is VERY important that you have your money parked in the SS direct express card.

Hi Vincent, I have read a number of reports of people on regular Social Security having their bank accounts illegally seized. The banks don't care what's legal and what isn't. This is my primary objection to the new rule that all SS people must use direct deposit. But what is this 'direct express card'? I have seen nothing on this option. The disability application forms ask for a bank account number; they say nothing about this card. Is it like a pre-paid debit card?

I have the Nolo book on applying for disability. I don't remember anything about the card, but it could very well be in there and I missed it or just plain don't remember. Thanks for the link. I will check it out.

I have personal experience with how insecure the banking system is and how easy it is for anybody to get your money if they have the account number. Once you put money in the bank, it's not your money, it's the bank's. It's up to them whether or not you can get it back. (Did I mention I hate banks?) I used to have a 'statement savings account'. I assumed the money was safe from the electronic funds transfer system, like 'old-fashioned' passbook accounts (remember them?). It wasn't.

The YMCA in Bangor (150 miles away!) accidently keyed in the wrong account number which happened to be my savings account, and Poof! my money was gone. (I did get it back later.) I complained bitterly to the bank about the non-existent security, which doesn't even check the name on the account. They said it was secure, because I get a paper statement that shows the money is gone. Jerks.

 

[Vincent]

The direct express card is something new; I believe it is within the last 2 years, maybe even less. It is a debit card that SSA has contracted with through Comerica Bank. If you look at the pdf I attached, it explains that there is no legal ambiguity with this method of fund storage. Since this account is for SSA funds only, and specifically contracted for such. It obtains full legal protection from the social security act, with no room for state interpretation. IE untouchable. I believe the impetus for the card was for those SSA recipients without a bank account, since SSA is switching to 100% digital funds transfers, with no more printed checks being mailed.

 

[_June]

Hello there fellow mainer
I know this is an old thread but I wanted to post here instead of sending you a private message, in case this helps other people.

You know what you should do?
You should write a blog (website). What to write about? About anything you want. About your life, even just what you wrote here. You write really well; my first thought was that some newspaper should hire you, but a blog would probably pay better, ha!
Place some advertisements on the website, so you get paid for advertising views and clicks.
If you want to try this, maybe I could help you.

Another thing I wonder about is if you could rent some of your land for farming. My husband and I want to have some goats and chickens plus a large garden, but the 2 acres we have aren't good for farming and we can't afford to improve the land yet. But if we could find someone to rent good land from, we would just put up a yurt (portable house) and more yurts for our animals, assuming there's a good well on site. And if by renting land we could help someone who is struggling? Even better! Hey, you could even give us free rent in exchange for food, firewood, handyman, and a warm cooked meal everyday!
Too bad we're near Augusta, though!

 

[*GG*]

jimells will get his attention.

GG

 

[jimells]

jimells will get his attention.

GG

Huh? Wha?

Hi _June it's nice to meet ya on the Internets. Unfortunately coming here to plant a garden would be a rather long commute, since I live near Houlton, about 200 miles from Augusta. I used to rent my farm to a neighbor who was growing potatoes, but he gave up on potatoes and just raises cattle on his own land. Unlike most of the U.S., the biggest loss of cropland in this area is due to bushes and trees taking over, not always a bad thing, but a sad indicator of how rural areas are being decimated by government policies and "the discipline of the free market".

Thanks for your kind words regarding my writing. Sometimes I can do it, sometimes it's just too hard. The Internet has made distribution of words cheap and easy, but unprofitable for nearly all writers. I have heard some appalling stories of how little money folks are being paid to write stuff for the Internet. Technology is a powerful weapon for driving down wages, as seen in manufacturing, meat packing, etc.

I have a friend who works part time for the newspaper in Lewiston. She has been there many years and is still paid peanuts. She even writes a regular column, but they won't give her a byline, or hire her full time, 'cause then they'd have to pay more. We certainly can't have that!

I do have some good news to report. I have finally won a partially-favorable decision on my Social Security Disability claim. This means I wll now receive a monthly payment, but they stuck it to me on the retroactive part of my claim. The law says they have to pay retroactive benefits back to the onset of my disability, less five months. (Apparently disabled people don't need to eat for the first five months of their illness/injury.) But the hearing officer is free to determine the onset date according to their whim and how badly they wish to be promoted.

I also just finished bankruptcy, so my farm and my retroactive benefits are reasonably safe from creditors. And with retroactive benefits in hand I was finally able to settle the lawsuit against my trailer house, with enough left over to fix the roof when the weather warms up. I will qualify for Medicare in June, at which time I hope to see a CFS specialist, most definitely out-of-state.

Have you found any doctors anywhere in Maine who have been even remotely useful? I found a nurse practitioner in Presque Isle who believes I have a real illness and is treating the OI symptoms. She won't go beyond that, but is more than willing to make any referrals I need, although *I* have to do the legwork of finding a CFS specialist.

 

[*GG*]

jimells will get his attention.

GG

See, it worked! _June

GG

 

[*GG*]

Mass. CFIDS has a Dr Referral resource:

Support Services
When people find themselves with a new diagnosis and don’t know which way to turn, or perhaps do not even know where to get a diagnosis, or need answers to new issues or problems that have developed, it is very reassuring to know that credible information and guidance is only a phone call or email away.

We at the Massachusetts CFIDS/ME & FM Association understand just how difficult this situation can be. We offer several types of support services.
We can:

• Assist with patient referrals to healthcare providers
• Give guidance on disability process and issues—please see the Disability Handbook available on our website
• Provide information about active support groups or other sources of support
• Respond to general questions about these illnesses.

To obtain services, please fill out the Contact Us form or call our Information Line (617) 471-5559.
Information Line and Email

The Information Line is the gateway to access the Association’s services. The volunteer will either answer your questions or direct you to a volunteer who specializes in support groups, physician referral, or disability counseling.

When you call the Information Line at (617) 471-5559 you will hear a message giving you the name and phone number of the volunteer of the day, as well as the hours the volunteer is available to take calls that day. Then call the volunteer directly during the hours given. We ask you to please respect the hours the volunteer is available—the volunteer is a patient just like yourself, with limited time and energy.

We ask that you wait, if necessary, and call the volunteer directly, at the time given and not just leave a message on our answering machine. We do not have an office staff. The more messages left on the tape, the more work for our volunteers. Please, only leave a message if you have some specialized concern or business with the Association and wish to have the Info Line coordinator call you back.

You are also welcome to submit your questions and contact us online for:

• Disability guidance
• Physician referrals
• General information

Emails are answered by volunteers, so it may be a few days before you get a response.
http://www.masscfids.org/services

 

[Jarod]

jimells

Great news Jim! Glad to hear you got benefits to keep you afloat and keep a roof over your head.

You live in some beautiful country. The crystal clear lakes in Maine are stunning. We boated in one where I could see the rocks and fish 50 feet or more down.

Love that Maine maple syrup too. My uncle makes it himself.

 

[Misfit Toy]

jimells, I am so happy things are looking up. This is such good news. Your writing is so good. I feel like I am there with you. I agree with another on here. Very happy to see this! I too love Maine. Grew up in New Hampshire and have family in Caribou. FREEZING....but loved it. Love Maine.

 

[jimells]

jimells, I am so happy things are looking up. This is such good news. Your writing is so good. I feel like I am there with you. I agree with another on here. Very happy to see this! I too love Maine. Grew up in New Hampshire and have family in Caribou. FREEZING....but loved it. Love Maine.

Thanks for your kind words. I live an hour south of Caribou. Freezing... yes! A week ago a storm dropped about two feet of white stuff on us, and it's still melting. We only have three seasons: Snow, Mud, and Flies, and everyone is impatiently waiting for Snow to turn to Mud, lol.

 

[jimells]

Mass. CFIDS has a Dr Referral resource:

GG, they sent me a list of three doctors from eastern Mass, with a rather cryptic message. They asked me not to let the doctors know that they are on the referral list. I don't understand what this is about. Does their request imply that I should not ask about these doctors on Phoenix Rising? A trip to Boston is 800 miles both ways, which I'm not really well enough to do (but I know I have to, somehow). I need to know something about any doctor that I am going to see, especially what treatments they might consider to be appropriate for me.

I've already been to one "integrative" doctor who claims to treat ME/CFS. After acupuncture and Chinese herbs failed to do the job, he kicked me loose with some ridiculous claim that he could "sense" I was being exposed to "something" that was making me sick, probably either "radon" or my birds. I don't have any respiratory symptoms, but that is irrelevant; I'm supposed to "fix" whatever environmental exposure is causing my illness, then I can call him again. As if that is going to happen...