A Kick In The Face

The Eagle (Social Security) delivers a kick in the face to the hapless canine (me).


Warning: there will be foul words in this post. I don’t use them often, but this is just the final straw. Venting ahead…

As you, my friends, know, this Summer has been hell.

Things got even “hotter” yesterday with the delivery of a letter from social security – and it wasn’t the kind of letter I had been hoping for.

The craziness started in May, when my Mom moved to Houston, I subluxated my shoulder & tore it even worse, was diagnosed with adrenal exhaustion, and re-visited Tick-Borne Disease treatment with my LLMD.

Then Rhiannon’s father become very ill and passed away, and we headed to Ohio, where he lived. My body has been precariously teetering ever since. There have been issues with the will, and her father’s estate, I have to deal with.

Stress on top of stress.

My shoulder has continued down its path of self-destruction, subluxating at will, catching & tearing more, making it more & more painful. I have no choice but to have surgery now.

I have to get appointments with an orthopedic surgeon and for a repeat shoulder MRI, and would if this migraine would just let up for a little while, and the crap stop falling on my head.

That’s why I’ve been writing less & less.
It hurts. A lot.

My weight continues to drop.
My doctors are very concerned by the muscle wasting (as am I). They have done countless labs, turned up a few abnormalities, but nothing to really explain it.

My LLMD thinks it might be TBD, likely Bartonella, but she thinks I’m too weak to do IV antibiotics, and might need IV nutrition first, because of malabsorption.

Both my docs want me to get an MRI/MRCP of my abdomen/liver/pancreas, plus a transvaginal ultrasound.

They are very clear about what they are looking for. Mostly, cancer. And, a reason as to why I’m not absorbing what I eat, and why I’m having “dysfunctional uterine bleeding” (I’m getting my period every 2 weeks, and with it a 5 or 6 day hormonal migraine from hell).

As I was getting a grip on all this, suddenly, my own father became very ill and passed away. This triggered a flood of memories of growing up, deep grief, sadness, and mourning.

My body reacted badly to the stress of that.

I’ve spent all week very weak, very shaky, having adrenal dumps & in hormonal migraine.

Just when I thought that there surely couldn’t be any more shit left to be dumped on me, that we had to be due a break…

I got a letter yesterday from social security.

I had appealed my social security disability application to the highest level, the appeals council. This has been going on for FOUR years.

There is mounds of evidence.
Thousands of pages of records.
Multiple letters from three different doctors.
And one very frank, very honest, heartbreaking letter from my youngest daughter, Rhiannon.

Despite all that, they turned me down. Again.

They didn’t even review it, standing by the administrative law judge’s decision.

According to my understanding, the judge broke the rules, because there’s a special rule for people with ME/CFS. I even pointed it out to him at the start of the hearing, and put that in my appeal.

I tried to get an attorney. You have to get a really good attorney. There’s lots of lawyers out there saying they do disability, but ME/CFS is not in SS’s blue book, so you can’t just have anyone. It has to be someone really good.

When I first applied, I was forced to have the application done by an organization that “specializes” in helping people get disability, because we were, and still are, receiving food stamps & TANF. They totally fucked up the application.

So I went to the attorney after my first two denials, and she pulled my file, read through it, but said she couldn’t take the case, because it was a mess, and she wouldnt get paid if she didn’t win, and she didn’t think she could win. She used to work for social security. She knows how they operate.

So I did the hearing & appeal myself. Was denied. Again and again.

Now I have 2 choices.

1. Appeal their decision, which means take them to Court – real, true, court. Civil court, the kind before a real judge, not one employed by social security. Sue the assholes. I would assume that would take a year or two.

Or,

2. File again & start from scratch, except since they have my medical records already it won’t really be from scratch. Instead of having my start date for disability be 1/2007 it will be 3/2011.

It means filling in a new application, which is about 40 pages long, if not more, but it can now be done online. I’ve spent much of today wandering through the social security website.

The kicker here is that they have dragged the process out so long that our TANF and, most importantly, my Medicaid, are about to run out, when Rhiannon turns 18 in December. My prescriptions and monthly doctor visits are at least $2,000 to $3,000 a month.

I cannot be without health coverage.

If it’s not going to be the SSDI Medicare I had hoped for, then it’s going to have to be SSI, and if I understand this correctly, the state will give me Medicaid until I get Medicare next March, and pay the co-pays, Medicare Part D, etc, after the Medicare kicks in.

Assuming I get approved.

I have a feeling I will, though. Not only am I a lot sicker, with this very dramatic weight loss (they apparently like shit like this), but I have a lot more documentation now than when this whole damned mess started, the forms will be filled in correctly, and I know a little known secret…

…Social Security has a rule whereby if you make a declaration that you are in “dire need” of approval immediately, for financial or medical reasons, they are required to move your application to the top of the stack.

It doesn’t get much more dire than this, folks. We’d have been out on the street years ago were it not for the generosity of my mother, and if I don’t get health care coverage lined up by December 1st it’s going to be very ugly.

So I will be very, very busy, in the coming days (or weeks), filling in the damned forms and marshalling the paperwork and re-reading the social security website.

Assuming my head doesn’t explode first. It really feels like it’s about to…

Thanks for listening…
~Ash

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Little White Lies

Everyone tells them – the “little white lies.” Right? Maybe.

Little white lies have been on my mind today. They aren’t the same for me as they are for you. I have Asperger’s, and part of Asperger’s is an “inappropriate” attachment to the “truth” and “honesty.” And a difficulty detecting – or anticipating – deceit & dishonesty in others. That part has landed me in some seriously hot water over the years.

But the “little white lies” I’m thinking about today are ones most people tell everyday. Someone, perhaps a clerk at a store, asks you “how you are doing” today. You automatically answer with “fine” or at least “okay.”

It’s harder for me. I am not “fine” or even “okay” on any given day. But the aspie aversion to lying causes me to look blankly at the person, to see if they are just saying it reflexively, because they were told to greet everyone that way, or if, as occasionally happens, they are someone who really means it. Sometimes it’s a friend or family member asking, and how much they know about me & my health struggles factors into my answer.

When stumped, brain-fogged into a state of incomprehension, I usually simply answer with “I’m here.” If “here” is somewhere other than my bed, then I guess I could, or should, say “I’m okay.” Because getting out of my bed would mean I am “okay” by the standards of what some doctors call “the new normal.”

I’ve heard Gabrielle Gifford’s doctors using this term – “the new normal” – in reference to her rehab. That they will work to get her as functioning as possible, but she was shot through the head, so there has to be an understanding that she may have to adjust to a “new normal.”

So, what should I say when someone asks? The Aspie wants to tell the truth, but most people couldn’t really give a shit, and they don’t even really hear what I say, anyway. I guess you will know, the next time you ask me, by my reply, as to how much I think you care, or want to hear.

Today, I am grumpy & irritable and blowing my constantly drippy nose & coughing. I’ve been sick on top of sick since Christmas, when I picked up food poisoning that led to a cascade of dehydration & electrolyte imbalances that led to PVC’s of the heart. About the time I got that mess under control, I picked up the plague-like cold going around, no doubt on one of my visits to the doctor, and have been sniffling, coughing, and fatigued – exhausted – beyond words.

Today I am not “okay” even by the “new normal” standards of “okay.”

Good thing I’m not going anywhere someone would ask, isn’t it? I might give them an earful!
Ah well, this, too, shall pass… eventually.

Sick & Tired

They say you shouldn’t blog when you’re angry. And I’m angry. Probably mostly from the amount of Ritalin I’ve taken today, but also a lot of built up anger. Built up over years.

I need you people, my family, to understand something. And it seems like, with one exception, you don’t.

What I need you to understand, and fully comprehend, and ACCEPT, is that I’m really, really sick. And I didn’t ask to be this way, nor do I want to be this way. I’m doing everything I can think of or learn of to get better. I wouldn’t be shooting a quart of coffee up my ass every day if I wasn’t trying my best to get better.

But I don’t feel like you really understand this. So here it is, plain and simple:

You know how you feel when you have the flu, the really bad flu, where you’re in bed for two weeks and it’s a huge effort just to get up to go to the bathroom, and you’re so tired you don’t even feel like watching TV? And you have a constant headache, and fevers & chills & sweats, and you just plain ol’ ache in every bone & muscle of your body, and nothing helps it feel better? You just want to lay there and not move at all because you’re so tired?

Can you remember being that sick?

That is how I feel every damn day. Some days are a little better, in that there’s a little tiny bit less pain, or a little tiny bit less total exhaustion, and some days are worse, where the pain takes over and is so excruciating I can barely stand it, and I’m so tired, so physically exhausted, that it’s an effort to even breathe.

Every. Damn. Day.

For years.

The docs give me all these meds to try to make it better, but they help only a little bit. My adrenal glands are burned out.

On days when I just HAVE to do something important, like go to the grocery store, there are meds for that: Nuvigil, a drug used to combat narcolepsy, and Ritalin, which acts like speed in the body of someone who doesn’t have ADD. I hate them. I hate taking them. They make me feel wound up and ache even worse, make me agitated and emotional and generally a wreck, but they do keep me awake, for a little while, and moving, as they flood my body with something, god knows what, to get it going. To get it to burn the little tiny bit of cellular energy I have managed to store up after days of doing nothing at all but laying around feeling like I’m too tired to move.

The other down side of these stimulant drugs is that they give me the very false sense of being able to do things, to move around and be active, go shopping, or drive, or go camping once in a blue moon, or clean my room. But this is a false sense: when  the drugs wear off I crash, hard, like a car going full speed into a brick wall. My body just quits.

And then there’s the payback. See, one of the distinguishing features of Chronic Fatigue Syndrome (CFS), is that exertion causes a worsening of symptoms – a worsening of exhaustion & pain – that lasts days, weeks, sometimes months. A flare.

So here’s the thing. I feel as if, despite my being ill all these years, that I am being BLAMED for being sick, for feeling like crap. BLAMED for being too ill to go somewhere, or it taking me 5 hours to make a round trip to home because I have to lay down and take a rest once I get there.

My mom lays in a hospital bed and reports being short of breath, being weak, and we all listen and are concerned.

I mention being really tired, and how it’s going to take another dose of Ritalin to keep me going (which I’m not supposed to take at the same time as Nuvigil, BTW, but desperate times call for desperate measures) and suddenly I’m accused of laying a guilt trip on people.

WTF? Sorry, folks, but I just don’t get it. She’s sick, we all listen and commiserate. I’m sick, and I feel like no one believes me.

Maybe it’s the Asperger’s in me. Don’t know.

But what I need you all to know, and understand, is that I’m still fucking sick as hell, and instead of blaming me for missing things, and laying a huge guilt trip on me about that, or acting like I’m just goofing off, when it takes me a long time to get something done, I need you to listen when I say I’m tired, or I have a migraine, or I just can’t do any more, and understand that I don’t want to be saying that, that I want more than anything in the world to be well and full of energy.

“Whatever doesn’t kill you makes you stronger.”

Right. Well, this damn CFS, Fibromyalgia, Lyme, Epstein-Barr, etc., hasn’t killed me. What it has done is make me strong enough that I at times, with the dubious help of Nuvigil and Ritalin and caffeine, FORCE myself to do things that need to be done. That HAVE to be done.

And you see me doing that and think, gosh, she looks well, and she must be doing better. And I am doing a little better, since starting the coffee treatment and stopping the damned florinef. But the word “little” is the key. Instead of spending every moment of the day in bed, I can force myself to get up, occasionally, and do things. That doesn’t mean I feel well. In fact it virtually always means I feel worse.

And it means I’m going to feel worse for days… weeks… or maybe months, depending on how hard I’ve been pushing myself.

Frankly, I’m terrified of what is to come after the last two weeks, of taking those wretched meds nearly every day, taking more than I’m supposed to take, DOING more than my body should be doing.

There’s going to be hell to pay. For every moment I’m up and taking care of something, and driving myself to keep going, there’s going to be hell, and it’s going to last a long time.

Because I’m sick, family, and it’s time you understood it and stopped treating me like I’m just lazy or something.