Getting Disability; a Record of the Process.

I've been meaning to write this post for years.  When I started the process in 2005, I never dreamed that it would take me several years and multiple advocates just to secure the disability income that I had paid for through my taxes for my entire life. But it did, and when it was finally finished my then attorney said "you should write this all down so that other people can find out how this is done.  I'll even refer my clients to it" (going to hold her to that one) but months turned into years, memory fades, depression is an evil beast, and procrastination is a self-fulfilling prophecy.

A few days ago a Facebook friend of mine posted a link to an article about Alecia Pennington. Now, I don't know how much of her story is true, but her tale of being denied basic services due to lack of documentation reminded me of the troubles I went through getting my disability approved.

...and it all started with the lack of a US birth certificate.  Well, actually it started with a friend of a friend who said he could act as my advocate for my Social Security claim, but several years later it ended with my getting my own passport.

I gave up working very grudgingly. I had been out of work for months before my last job, I worked some contracts but mostly just looked for work and wished I could get hired on somewhere. This went on for at least a year, and then I was offered two jobs simultaneously. One in Las Vegas that would have required me to move the whole family (I'm actually glad I didn't take that one now) and one here in Austin working for an architect who was adamant he needed me.  Knew what I was good at, was aware of what my health was like, needed me to save his business (this was how he phrased it to me) So I agreed to go work for him and turned down more money from the Las Vegas job.

I spent eight months working for him.  Eight months of learning another CAD system (I think that's 5 different CAD platforms) documenting the tools for other users in the firm, automating the process of modeling and document production as much as possible, and producing finish-out drawings for an office space in less than a day to demonstrate how the process could be completed quickly. That work, the kind of managerial design work I loved getting into, coupled with spending an excessive amount of time on paper getting to that point, through weekly active vertigo and the accompanying brain fog that slows mental processes most of the time. I spent months finishing the modeling and documentation on the building that was my primary responsibility, when it probably should have been finished in weeks. That fumble that I couldn't explain outside of sickness ultimately left me jobless again with a family to feed and even fewer possibilities than I had a year previously.
I was able to get commended for producing an entire project's documents in a single day, and get fired for being sick too much, all within the same 8 month period. 
I was literally hopeless at that point.  I didn't know what else I could do, and the bills kept coming in, with my health care incurring mounting costs of its own. I was spending a lot of time helping a wheelchair bound family friend then, and she suggested I contact a friend of hers to see if disability was a possibility.  Given that the only remaining choice that appeared to me was life insurance coupled with a fatal accident, I figured I'd give the government a chance to own up to the promise that I could rely on it to be there when I was in need. So I called her friend, and we started the process.

First off, you have to have doctors on your side.  You have to have a medical finding, in writing, that you have an illness which is covered as a disability.  Luckily for me Meniere's is one of those illnesses, and I had an ENT who was happy to back up my disability claim. We filled out and filed the documents and waited.

You do a lot of waiting when dealing with the government. Everytime I mention filing or documents, you should understand that at least a month goes by before there is a response.  That is if you are lucky.  If you aren't lucky they lose your paperwork and you have to refile and wait another month.  It's also worth noting that every single application for disability will be denied the first time. So if you don't intend to appeal, don't even start.

So we appealed and went to the scheduled meeting. The appeal was denied. This was the point when I realized that what I needed wasn't just an advocate for my Social Security disability claim.  I needed an attorney, because the advocate I had just shrugged and told me he tried.

After finding a reputable disability attorney (if you are thinking of pursuing disability, start by getting an attorney on your side and save yourself some time) we started another application through the process.  This one had secondary documentation and signed affidavits from witnesses. This one was also denied the first time through. It was appealed. It was denied.  It was appealed again. Ultimately my attorney called me one day and told me "the Meniere's isn't enough".  She paused for a bit.  "Do you think you are depressed?"

Am I depressed? Well, I couldn't very well admit that suicide was my only other alternative to government assistance (not without ruining the viability of that option) if I wanted to see my family fed, so I had to admit that I was struggling with just a little bit of depression. The entire tone of the conversation changed at that point.  She said something like that will make it much easier for me and got back to work on my case.

I had almost given up the faint hope that disability would offer, when the approval for my claim finally came through.  After two years of applications, denials and appeals, I was approved for disability payments.  Just in time, because we had scraped out the last of our savings and was in the process of hocking valuable items in order to get the bills paid that month.

Just one problem.  One tiny little hitch.  Hardly worth the bother, really.  See here, Ray Anthony Steele, you aren't really a U.S. citizen.

Excuse me

I've paid taxes my entire working life, starting at age sixteen. Never failed to file, never failed to pay. I even paid twice some years. Every time that the IRS audited me I wrote them another check, and they audited me every year that I was a card-carrying member of the Libertarian Party.  I've paid my dues for 30 years, I think I'm a member of this club.

Except for one tiny little problem.

When getting a Social Security card, make sure that you bring with you all the documentation required to prove US citizenship; do not, under any circumstances, allow the person handling your application to harbor any illusions that you are not 100% a US citizen or allow them to submit the application without insuring that the box "US citizen" is checked.  This is of paramount importance.

The base hospital where my parents were stationed didn't have care for babies that were delivered early, and I was early according to the charts. So mom went to where the prenatal care was at, a hospital off-base that wasn't considered part of US territory.  Consequently I have dual citizenship.  I'm a limey (it explains my love of a cuppa) I have one of those birth certificates that makes conservatives sleep poorly at night knowing I live next to them.

When I got my Social Security card back in the dark ages before computers, we went in with my British birth certificate.  They told us no problem and marked me down as not a US citizen. Forty years later, it really is a problem after all.  It's a problem because that little notation on my Social Security record means I can't claim benefits from the US government. So long, don't let the door hit you on the ass on the way out.  It matters not at all that taxes are deducted from your paycheck every time you earn a wage.  It doesn't matter that both your parents are American citizens. What matters is the checkbox next to US citizen on the Social Security form.

According to the computers at the Social Security Administration, I wasn't a citizen. We had stumbled across this fact early in the process, but I was assured that if the claim was validated, the citizenship problem wouldn't be an issue. I believe the phrase not a problem was repeated then, too. Except it was.  Because the birth certificate is British.  Very clearly British and not American.  What was needed to clear this up was a record from the embassy in London stating that I was an American citizen born to US parents. That piece of paper I didn't' have.

The document I wished I had at that point.
I started talking to immigration attorneys, because immigration law is a tangled jungle of lies and deception; and nobody, not even non-immigration attorneys have a clue how immigration decisions are rendered. I'm not even sure immigration attorneys know.  I did find out that the specific document I needed was called a council record.  If I could find that document it would prove that I was an American citizen born abroad, and I would qualify for disability.

Didn't have it. No idea what it looked like even (it's blue. I'll tell you about it at the end) so I started talking to relatives. Mom, specifically. She remembered that I came into the country on her passport, that I was listed as a US citizen when I entered the country. Unfortunately she couldn't find that old passport, it had been lost somewhere in the 20 or so family moves that had occurred since the 1960's. Back to the immigration attorney.

Well, it was possible to request a copy of the passport be sent to me, if I was indeed listed on the passport. Found that form. Filled it out, got it notarized and sent it in. Waited. Waited a long time. They eventually did find and mail the passport record back to me, and I was able to use that record to apply for my own passport, and that passport made me a citizen.  Congratulations, citizen.  Here's your first check.

Hang on now. This check is for one month. I've been working on this for nearly 4 years. Am I not owed disability since the date of my first application?

Well, yes that would be true if I had been a citizen when I first applied. But you see this date on your passport, the one saying it was issued last month? That is when you became a citizen. Once again, have a nice day, don't let the door...   Nothing doing. Four years I've been at this. Four fucking years. I'm not stopping till I get my four years of blood back.

At this point I'm trying to exude patience and understanding, just to see if I can get through to the bureaucrat on the other side of the desk.  I have this passport because my mother brought me back to the US on her passport back in the 1960's.  That passport makes me a citizen. Says so right on this document.

Well, that might be true, but that just means your mother was a citizen and she brought you home with her.  Was your father a citizen?

Was my father a citizen? Was my father a citizen? Well, he was in the US military at the time I was conceived, so for all of our sakes I hope he was. I mean, we don't want any foreigners fighting in our ranks, that would be unthinkable.

I don't know my biological father. I sent the man an invitation to my high school graduation even though I had never met him in living memory. I was raised by several different men in succession, all of which tried to be dad and failed in various ways. He never replied to my invitation. I have never seen a page of correspondence from him anywhere in records that I kept or my mother kept.  He's a cipher to me. A complete unknown. I wouldn't know where to even contact him at this point.  Don't even know if he is still alive. I'm sure he had a Social Security number. I'm sure he has a military record.  No idea how that information is dredged up without contacting his family, which is also an unknown to us.

So I asked the Social Security administration if they knew how to find his number, how to track down his military record. Started putting out feelers for getting that information, looking for his family to contact. As luck would have it, the Social Security administration blinked at that point, and came up with the information themselves, attaching his file to mine and approving the back payments.

There was a year or two of argument about paying my attorney and discovering that they had withheld two attorneys worth of money from my back payments that followed the admission that I really was a citizen since birth; but at least I got them to admit that I really was a citizen after all. That (and the money) was satisfaction enough.

Then my dad died.  Not the cipher, the man I never knew. The man who spent the most time with me. The man I could rely on even though he wasn't married to my mom anymore. He died after a decade of battle with cancer. He made up for his earlier failures, and I accepted his apologies and considered him my dad for a good number of years before the end, even though his genes are not mine.

While we were in Colorado preparing for the funeral, going through old records and photos, reminiscing about the past, his last wife (my second mom. I think I have 4 now. Maybe even 5. Well, mom is mom, but then there are other moms. Yes, it's confusing) was suddenly struck with a memory. Going through the attic at gramma's house as they prepared it for sale, they stumbled across a box of stuff that had been shipped back to the US from England when mom moved back to the States with me. There was a document about me in the box, and she didn't know if it was important but she thought I'd want to keep it. After rummaging around in a drawer for a few minutes, she produced the Council Record that would have saved me years of work had I only known who to talk to about it. I just thanked her and gave her a hug. What else are you going to do, at that point?

That's it.  That's my disability story finally written.  I'm sure I'll re-edit it at some point, add some photos probably. Put in the names of the appeals courts I went to, the documents I submitted, just for clarities sake.  But right now, I just want to step back and admire the fact that I've written this damn thing.  Took me long enough. Longer than it took to get my disability approved? Just about.

Rooting Android

The Wife's phone is dying. She's insisted she didn't need a smartphone for decades, but now she wants one.  One problem; we're dead broke.  We had to steal from Peter to pay Paul this month in the first place, large phone expenditures aren't in the works for us.  If you want a phone that works well with today's apps, you seem to need a new phone.

There are actually multiple problems here. We found a service called Ting.com awhile back, a service that saves us serious amounts of cash on cellphones. Ting.com makes them cheaper per line than standard wired service if you don't spend hours on the phone every day. There is only one problem with this service; you have to provide your own hardware.

Luckily there is a service for that, too; several of them, in fact.  I like Glyde.com, I bought my current HTC device from them. My first foray into this strange world of buying used phones, I bought a different device, only to discover that the memory constraints on the phone were so limited I couldn't update the phone to the current software. Couldn't unlock the bootloader (whatever that was) much less root it. I picked HTC the second time out because HTC allows you to unlock the bootloader right on their website. Gave the first phone to my son. His first cell phone. That he leaves everywhere except in his pocket. Perfect phone for him.

Bootloaders. Rooting. It was a whole new language that I had resigned myself to learning, so I began exploring exactly how to even talk about what I wanted to do to the device, trying to figure out what the verb rooting really meant outside of swine behavior.  I apparently needed a new rom to flash after this rooting thing; and I was certain I wanted to avoid bricking the phone, because that sounded bad.  I mean, you can't call with a brick, even the rocks know that.

I quickly discovered that it's a minefield out there. Even if you find the right boards, half the links don't work. Even if you find links that work, most of them lead to shady back-alley websites that I wouldn't want to visit without protection; much less disable security on my phone and engage in behavior that my phone warns me I shouldn't do even with people I know.

I'm under time pressure here.  The Wife wants an iPhone. The cheapest one is twice what I could pay for a comparable android device. She's listened to me whine about this HTC device for months now, I've convinced her that you can't fix old phones to do the things we want them to do, and I haven't even gotten to the point of trying to modify my phone. It is time for me to bite the bullet. Now or never.

About 12 hours ago, I jumped in with both feet. I got my token from HTC, Unlocked the bootloader. Rebooted. Yep, there goes all those old text messages.  Glad I didn't want to save those. Well, it doesn't seem like I did anything else.  Head scratcher.  I scrounge around for old links.  Hey, what's this? I can just download one program from xdadevelopers and it'll root my phone? Well, getting superuser status on the phone is the next step (what rooting means. SU, superuser. Known to those of us who Linux. Yeah, I knew that) so that's probably the right thing.  Xda's users seem to be some of the more knowledgeable types out there, so I'll bite.


Works like a charm. Now what?  Can I delete apps? No. All that damn garbage like Sports & Racing apps still clogging up the system. I really, really don't want to go find a rom (image) to flash (load) while under time pressure.  That is the kind of thing you do to phones you're not counting on using for a bit, altering all the interfaces and playing around trying to break the software.  I just want a program.  An app.  Something that will delete crap I want gone, move crap that I want somewhere else so that the 500 megs of phone memory stays as open as I can get it. Back to the Google. Wait, there's a root uninstaller? Really? On the Google store, even? Nice.


Bye bye Tweeter. Sports you are out of here. Racing, go drive somewhere else. All you old pre-installs for Twitter, Facebook, etc.  All of you are now uninstalled. I'm going pro with this app. Hey, I can move stuff to the card with this puppy.  This is what I'm talking about! Where was this power months ago? I feel like a programmer, which is a dangerous delusion for me.

I've been tweaking, deleting, and tweaking again for the last 12 hours. Convinced The Wife that we could save a few dollars on a second HTC device, and I can make it do what she wants it to do (fingers crossed now) so the time pressure is off.  Now I'll have a play phone for a few days at least. Time to find an alternate rom I want to play with.  And backup.  I need to find a rom builder.  Back to the Google.



I received a brand new  Nexus 5 for my birthday, and that has kept me beautifully distracted since I got it. I can finally play some of the games I've been wanting to play and install several apps that just were too big for the HTC Evo Shift. My heartfelt thanks to the friends and family who made the gift possible.  It really was the only thing I wanted, one of the few things I can use while essentially bedridden for days at a time.

Treating Meniere's & Its Symptoms

I get this sort of question a lot "what do you do to combat Menieres?" or "What symptoms do you have?" The latter is asked because not everyone diagnosed with Meniere's actually has all the symptoms associated with the disease. The former is usually asked because; rather than there being no information available on the subject online, there is a lot of contradictory information from a myriad of sources.

Let me tell you about my Meniere's, since I haven't done a thorough reporting of symptoms (ever) and really haven't talked about the disease since I first started this blog in 2005.

When I was a working stiff, starting about 2002, I would be subject to bouts of rotational vertigo that came on quite suddenly.  At first they seemed to be related to allergies and those times of year (spring and fall) but as time progressed they became more generalized and could be brought on by high pressure weather, or just turning my head the wrong way.  These bouts of vertigo seemed to last anywhere from 6 hours to a full day, and caused me to miss two days of work. Towards the end of my work life I was getting vertigo about once a week, making my average work week 3 days in length. This is not enough work for the average boss to accept. Definitely not enough work in an architecture environment. Consequently I was fired from my last job for being sick too much, even though I accepted the job with the stipulation that I was frequently ill.

Now that I am on disability and free to manage stress for myself, I'm lucky if I can go a month or two without vertigo which I consider a huge success.

But the vertigo is just the most visible symptom of the disease.  Almost as debilitating is the constant tinnitus, which comes close to drowning out normal conversation and makes concentration very difficult.  The tinnitus never stops.  Sometimes it is loud, sometimes it is soft, and sometimes it causes the affected ear to amplify what little sound it hears (which I've heard referred to as hypertussive) making even the smallest of sounds painful and generally sending me into a room by myself so that I can keep things as quiet as possible.

Then there is the pressure in the ear. Like the tinnitus this varies in discomfort, sometimes a nagging ache, other times a stabbing pain as if some fluid containing vessel in the ear is about to burst. The pressure in the ear is often a precursor to vertigo.  If I get a metallic taste that goes with it, I hit the medication immediately.  Paying attention to how I'm feeling on any given day is how I've managed to keep the vertigo to a minimum.

The ENT has informed me that hearing in my affected ear (left ear) is about half of what it should be.  That is apparently the point that most sufferers opt to have procedures done in order to alleviate symptoms.  There are a couple of options available to me, but neither of them offer better than 60% chance of long-term relief, so I'm not jumping up and down to have my left ear permanently silenced.

I've only had two surgeries in my life. When I was a small child I had my tonsils removed. It was a common practice back then for children having extreme allergic reaction and throat swelling. Most recently I had a procedure done that corrected a deviated septum and reduced the turbinates in the sinuses. Since allergies were so bad for me as a child, and allergies seemed to be a big trigger early on in the progression of my Meniere's, it seemed like a logical step to see if fixing the breathing problems I've suffered with for all of my life might not alleviate some of the worst symptoms of the Meniere's. Sadly, the procedure had no noticeable effect on Meniere's symptoms, but has apparently reduced my allergic reactions and the number of sinus infections I have to suffer through.
I will never forget the first time I went swimming after the surgery and got water in my sinuses.  Before the surgery it was a major struggle to get them to clear.  After the surgery I just tipped my head forward and the water ran out. "so that's what working sinuses are like!" I exclaimed to the amusement of all present.
I have light dizziness and disorientation almost constantly.  Disorientation brings on the brain fog on bad days, more pronounced after vertigo attacks. There are good days and bad days, but turning corners always carries the risk of colliding with objects I know are there and thought I would miss. The last symptom that I can tie to Meniere's is a seriously vicious migraine headache.  Last year I was getting them about every 4 days, but a trip to the GP where I finally admitted the headaches were that frequent got me a daily script that has reduced the migraines to something I only enjoy during allergy seasons.

Treating Meniere's runs something like this for me.  Behaviorally, I avoid stress and allergens as often as I can. That means getting enough sleep first and foremost, since stress is directly related to the amount of sleep that you get versus how much you need. This is one of the hardest things to do in this culture, the US culture, justify getting a full night's sleep.  Never mind a full night, I frequently can and do sleep for longer than 12 hours. I have found that 8 hours is more than enough if I can get them from 10 pm to 6 am, but the problem is getting to bed before midnight (as I'm sure most people will agree) and staying asleep for the full 8 hours.

Probably the single most beneficial thing I've done aside from sleeping more is to stop sleeping flat. I tried mounding pillows on the suggestion of touring musician who is a fellow sufferer, and that seemed to help.  Then I tried wedging up the head of the bed by about 6 inches, and that seemed to produce even better results.  Unfortunately the wife hates the heads-up sleep position, so I begged an adjustable bed from a friend who had one in storage. I've been sleeping on that bed ever since, and I credit it with reducing most of the inner-ear pressure that I used to experience while trying to sleep.  If you don't believe me, try it.  It really can help.

I walk everyday, or as close to everyday as I can manage, regular exercise (sadly) being another facet of stress reduction. Walking puts me afoul of my allergies for almost anything that grows, so I have to do some of it indoors on a treadmill. I prefer to be outside whenever I can manage it, so allergy medications are something I tend to take frequently.

There doesn't appear to be any real treatments for the tinnitus, sorry to say. Mostly it is a matter of enduring the constant sound (that does contribute to the brain fog) or masking the sound with other sounds.  I find Rainymood, suggested by a redditer, works best for days when the tinnitus is incredibly annoying.  Most other days I just endure the constant barrage.

If the ear is bugging me and I don't have vertigo yet, I take pseudoephedrine/guaifenesin, that usually reduces the pressure. If allergies are acting up, I add fexofenadine (most people prefer Loratadine. I find it dries the sinuses too much unless it is ragweed season; then it stops me from drowning) If the migraine is kicking in, I take prescription doses of ibuprofen and acetaminophen together. I recently got a prescription for amitriptyline which I find removes my need of other painkillers almost completely. I only take them now on the really bad days, days when I've done something stupid like carry 40 lbs. of dog food or gone for a walk on a high allergy day.

Avoiding salt was something I was already doing for hypertension, and my hypertension medication contains a diuretic, which was the first medication suggested by my ENT.  I haven't really noticed any dietary triggers, to be honest.  Caffeine I avoid because it keeps me awake, not because it makes me dizzy.  I know many sufferers have found they have dietary triggers though, so I felt it was worth noting diet as part of this blog entry.

Vertigo treatment starts with meclizine (dramamine) which is what I normally take. Serc or betahistine isn't anything my doctors have ever recommended but is apparently common in Britain. It's results with Meniere's symptoms is decidedly open to question. However if you don't get the results you want with one drug, try another and another if necessary.

This is a key point in understanding Meniere's and its treatment; nearly all the procedures recommended by doctors are designed to stop the vertigo. The vertigo is thought to originate within the labyrinth of the inner ear, so most treatments are centered around that part of the body. From the most drastic to the least invasive, nearly all of the surgical treatments silence the affected ear, permanently. Some of the less invasive will leave you with some hearing in the ear, but their efficacy is highly questionable.

Reading through the treatment page on Meniere's Disease Information Center website, it becomes very clear that most sufferers will try anything to stop the vertigo.  If you've ever been afflicted with a Drop Attack from rotational vertigo, and can imagine that sensation continuing for hours and days at a time, you would understand why sufferers are willing to try anything to make it stop.

If the vertigo has already made me nauseous, I take phenergan. If the vertigo doesn't respond to the meclizine (which happens) then I take valium to let me sleep or xanax to relieve the anxiety of the attack, which generally leads to sleep (all three require prescriptions in the US) Unconsciousness is a mercy when consciousness is a never-ending torment of spinning.  Spinning without end.

Flying is the fun part. I have to be medicated to fly. I used to take phenergan and valium, but my ENT gave me a prescription for xanax the last time I flew.  I much prefer the xanax because I don't sleep, but I have to have supervision because it makes me a bit fearless, while not actually giving me better balance. Just an accident waiting to happen then, but at least I can sit through the flight without freaking out at every movement, getting queasy and vertiginous.

That and gum.  I always travel with a pack of gum. Have always chewed gum while flying since I first went up in a Cessna with my dad as a child. If your ears bother you because of pressure, chew gum.  Far more useful than earplugs.

I make a lot of drug recommendations in this blog entry.  Having suggested drugs for various treatments, I really should also offer the following caution; drugs all have different effects for different people, and this fact can not be overstressed. These medicines work for me and I'm thankful that they do. Treating Meniere's means finding your trigger and then doing your best to avoid it. My triggers seem to be stress or allergy related. It will be a trial and error process finding what will work for you. Here's hoping it takes less than a decade.

If you are reading this because you to have Meniere's, then I am truly sorry.  I have often said that I wouldn't wish this disease on my worst enemy.  Being disabled has made me question many of my assumptions.  Things that I thought were real turned out to be delusion. Problems that I thought were paramount now seem trivial. Services I complained about paying for are now essential. Seeing life from this viewpoint has made me a better person, but there has to be easier ways of getting this insight. Ways that don't rob you of hope, of purpose, permanently.

I miss architecture and drafting nearly every day. Those were my purposes in life prior to this debilitating disease. More than a decade later, I still have dreams involving architecture; admittedly, the last one involved all my drafting tools being ruined because they had been piled in a trailer for ten years, but still the dreams persist. I have them almost nightly, reliving events from my productive past only to wake up to the reality I face now.

So if you are a fellow sufferer, please know you have my utmost support.  We all need people we can rely on now, because there are times when we really are helpless and won't survive without them. While that has always been true of everybody, most people go through their lives never admitting this fact. Cherish those around you who are there when you need them. That is what it truly means to be human.