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It has been a productive week so far

A few weeks ago, I had blood drawn for the Lyme disease and babesiosis tests the internist I've seen recommended.  I had an appointment to discuss the results scheduled for today, which got bumped to this past Monday early last week, as I was checking if the results had arrived and confirming that appointment.  Friday I went to the local Social Services office to collect information and ask if there was anything in particular I should get from my doctor that might help with the process.  The man at the front desk was very nice and helpful, and he handed me applications for cash assistance, medical assistance, and food stamps.  While one can only be on one cash program at a time, he said the cash assistance program would be useful while I file for disability.

Since that was late Friday afternoon, I wasn't able to do much else, but my appointment on Monday wasn't until 1:30 p.m.  I spent the weekend completing the applications to the best of my ability, and early Monday morning I went back to Social Services to see about getting an interview.  I was there for just about three hours and processed all the necessary information which was available at the time.  The lady who interviewed me gave me the first sense of hope I've had in a long time, and she also gave me a checklist with more forms to be filled and documents to be submitted.  I came home, had breakfast, and prepared to leave for my doctor appointment.

The results of the babesiosis testing were negative.  The results for Lyme disease, however, were clearly positive.  As the doctor described it, "I've never seen results this positive."  With my asking, she explained that—simplified—one branch of the test is for long-term antibodies and the other branch is for short-term antibodies (IgG and IgM).  The long-term antibodies should always be present, and therefor that portion of the test should always be positive once I've had a positive result.  The short-term antibodies, however, should disappear in two to three months, and those results were as clearly positive as the rest.  This means I have an ongoing infection for which the two previous rounds of antibiotics—doxycycline from January to February 2005 and amoxicillin from August to September 2005—were ineffective.  The new problem is that while the doctor could cheaply give me doses of doxycycline, it would not cure the disease, as it failed to do the first time.  I would need to take a combination of at least two antibiotics, preferably mixed with some probiotics in a fancy cocktail to stave further negative effects.  The treatment period would be a minimum of five to six months, and she suspects in my case that treatment would be upwards of a year.

The Disability Incapacitation 402B form the lady from Social Services told me to have my doctor fill and return was not something the internist could complete, and she didn't know anyone who could.  The doctor recommended I try Patient First, an urgent care center practically on my way home from her office, while the nurse and receptionist recommended a Lyme literate physician in the same area.  I called the physician and was told he no longer treats Lyme disease, does not accept medical assistance, and does not perform this from of evaluation.  The internist also is not involved with the medical assistance program, which requires doctors to register an account with Social Services in order to receive payment.  It seems similar to how doctors are not required to accept Medicaid, and many of them don't because Medicaid often doesn't pay them or takes a long time to do so.  I went to Patient First, where they said I should have received a list from Social Services of providers who could perform the evaluation.  They couldn't help me directly—not for the $60 on the voucher Social Services gave me but for an amount closer to $600—but they were very nice, and the doctor on staff sat and talked with me, sympathized, and did her best to search for other organizations that might help.  She mistakenly thought I was already receiving medical assistance, and that was the reason Shepherd's Clinic wouldn't be able to accept me.  This wasn't the case, so I called Shepherd's Clinic the next day—as they are closed on Mondays—and finally learned of the two organizations in the area which perform these evaluations: JAI Medical Center and Total Health Care.  Total Health Care requires appointments and would not have seen me until Sunday; JAI Medical Center does not accept appointments, being a walk-in clinic, but could see me the next day if I arrived early enough.

In the meantime, tim_dodge wrote a letter for he and my other roommates to sign, verifying my portion of the rent; I was able to find my birth certificate in my old medical bag from 2005; and obtaining a copy of the lease on our apartment was easy.  While at the leasing office, I also reported some maintenance issues and received refrigerator magnets with the appropriate phone numbers on them.

Yesterday involved an hour or so of driving separated by five hours and 20 minutes spent at JAI Medical Center, filling out paperwork and being evaluated.  When all was said, written and done, I left the building with a completed 402B form indicating the need for a year of medical assistance, including psychiatric treatment, to bring to Social Services when I have the rest of my documents.  I have been playing a game of phone tag with a disability advocacy group, whom I will call again after posting this, and the last thing I need is to print bank statements and collect proof of application for disability through Social Security.  Today will be trying to coordinate with the advocates, as this is a very important step in applying for disability, I gathered, and I certainly would like some recommendations at the very least.  I have a good body of evidence to support a case for temporary disability, though I understand that unless one is terminal, there is a high chance of initial denial.  If I cannot make progress with the advocates by tomorrow morning, I may apply for disability on my own anyway to provide those documents to Social Services.

I will not be able to receive cash assistance of any kind until my unemployment benefits are gone, which will be soon.  Once I receive my final check, and I bring all the documents required to Social Services, I should be able to begin receiving cash, medical and food stamps assistance, at least until I begin receiving disability benefits, which could easily take upwards of a year without advocacy.  Thankfully it appears I should be able to receive at least one year of assistance while I try and improve my quality of life.  I am feeling substantially hopeful for the first time in years, and I truly hope things continue to move in the current direction towards assistance and treatment.  I hope I can also gain further diagnoses for my gluten intolerance and hyperglycemia, preferably ones that are treatable and can expand my dietary boundaries.  I will continue working towards these goals.

It seems silly to me that one must lose everything in order to gain any support, but I am glad at least that things are beginning to move in a good direction for me.  Assuming all goes well in this process, this will also help me assist my roommates in purchasing a house and possibly reduce my monthly costs.  My greatest hope is that while I am gaining assistance, my health will improve enough that I can begin some of the creative projects I've had in mind that may help garner future income.  Perhaps I'll be able to coordinate with some people that can help me achieve those goals.

In the meantime, I'm going to make that phone call and hope to obtain an advocate today.

Comments

( 20 comments — Leave a comment )
hummingwolf
Mar. 26th, 2009 05:46 pm (UTC)
Yay! It sounds like you're making good progress! Okay, there is a good chance that you will soon feel like things are going nowhere--this is normal when you are dealing with bureaucracy. But getting all that paperwork done, finding out that you do still need treatment for Lyme, and finding clinics and other services that might help you, really is very good progress. Here's hoping you get assistance (especially Medicaid) soon
aekiy
Mar. 26th, 2009 06:05 pm (UTC)
ya.. I am feeling good about this week, if also tired. Spoke with advocacy group earlier. They actually recommend trying on my own first, since sometimes it works, and that way I don't get charged. They only charge anything if my case gets approved, but they charge 25% of any back-pay I receive (up to a certain amount). They also recommend applying by phone, which means waiting for evidence of my application by mail, but it also means not being judged based on my looks and only based on what information I give.

And ya, I'm sure after the steam of the past week, things will hit a lull where I'm waiting for things to happen. I'm not sure how much can happen during April, but we'll see. I know it'll be a good while before I get a decision from Social Security, and it'll probably be a denial, then I'll have to contact the advocacy group again. But I'll scrape things together and make the best case I can in the meantime.
dancinglights
Mar. 26th, 2009 06:15 pm (UTC)
oof. good luck with all the red tape, and getting all the support these well-intentioned services are for!
aekiy
Mar. 26th, 2009 06:32 pm (UTC)
Danko. I shall keep at it as best I can.
kitten_goddess
Mar. 26th, 2009 06:43 pm (UTC)
Good luck! *hugs you*

Are you coming to Mad Science Coffee Saturday?
aekiy
Mar. 26th, 2009 07:00 pm (UTC)
I am thinking about it. We shall see how I feel at that point.
stardansr
Mar. 26th, 2009 07:40 pm (UTC)
*warm hugs* Good luck to you on getting things sorted out and settled.
aekiy
Mar. 26th, 2009 08:25 pm (UTC)
Danko. ::huggle:: Will try an' keep going 'til I can go no further.
sixteenbynine
Mar. 26th, 2009 08:42 pm (UTC)
I suspect we could write a book about this whole horrible adventure.
aekiy
Mar. 26th, 2009 09:29 pm (UTC)
I have occasionally considered that.
helen99
Apr. 5th, 2009 04:30 am (UTC)
Good old Maryland. They required you to lose your job and run out of unemployment before you could be treated for a serious illness. I think it's a good idea to keep a chronicle of what's been happening, as others have said. It could be useful to people going through the same process, and also to Lyme activist groups who are working to bring about needed changes and greater awareness.
actingbunny
Mar. 26th, 2009 09:55 pm (UTC)
you should totally write a book/detailed diary about the whole thing i know there are people who would want to know and would be able to read it and go (i went through that crap too, i'm not alone)

Glad the ball is rolling and you are finally getting some difinitive answers.
aekiy
Mar. 26th, 2009 10:20 pm (UTC)
I will definitely consider it. I might just start a long ramble file that could potentially be reworked into a book someday.
rmash1948
Mar. 26th, 2009 10:11 pm (UTC)
Yay for rolling balls, ducks lined up in a row, and reaching goals! ::hugs muchly::
aekiy
Mar. 26th, 2009 10:22 pm (UTC)
::hugglesquish:: Danko. Hopefully I can keep at it and get things done.. having another bout of being really wonky, but hopefully I can just rest through tonight and get back to things tomorrow. All that's left is to apply for disability, which I think I will attempt to do by phone tomorrow. I also want to check for more medical records an' stuff.
rmash1948
Mar. 27th, 2009 08:34 pm (UTC)
That all makes sense to me, hon. ::nods::
alk
Mar. 26th, 2009 10:28 pm (UTC)
Good luck with all of that! I'd probably get so annoyed if I had to deal with all that red tape. Bleh.
aekiy
Mar. 26th, 2009 10:35 pm (UTC)
I am at least far better prepared for this sort of thing than I was when my health first dropped through the toilet several years ago. It is still a painful process, but the people so far have tried to make it as painless as they can, for which I am grateful.
breath_seeker
Mar. 28th, 2009 12:28 am (UTC)
Oh wow. I hate leaping through hoops to keep benefits.
aekiy
Mar. 28th, 2009 12:38 am (UTC)
It is a stressful process, but at least I'm getting a lot further and people have been a lot nicer than the last time I tried, a few years ago. Disability is apparently booked for phone appointments, so I may have to either go there or apply online. Will probably look into the online thing after some rest.
( 20 comments — Leave a comment )

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