Archive for the ‘Venting!’ Category

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.


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…


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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.

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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.

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(Note: this post is about my discontinuation of methadone, which I was put on for relief of chronic pain. For more info, you can read this blog post.)


This stupid, goddamned methadone withdrawal thing is completely, totally, UNACCEPTABLE!!!

My body is fighting tooth and nail for this last little bit – it’s ridiculous! I was taking 50mg a day for god’s sake, that’s a pretty hefty dose, and now that I’m just cutting it from 5mg to 2.5mg over the last couple weeks – note I said weeks – the withdrawal is WORSE than it was when I was dropping it 5mg a time every two weeks!

I got stupid the other night – literally. I was slowly stretching it out from being on 5mg… so from 12 hours between 2.5mg doses, to 14 hours between, then I jumped to 18 hours and all was (mostly) okay with just mild withdrawal… until I forgot to take it, or, looked at another way, screwed up the time I put the alarm for and went from 18 hours to about 28 hours between doses before I realized my timing was off. And because methadone is metabolized over 2 – 4 days time, that meant that I was gonna be low for 2 – 4 days.

So I took the dose as soon as I remembered it, and thought, well, maybe, this will be okay, and I can go from every 18 hours to every 24 hours and be done drawing this out to the 2.5mg/day point, and then will give it a couple weeks and slowly start adding an hour between doses until I was totally done.

Yeah, doesn’t work like that, it seems.

By last night I was in withdrawal, and since you don’t know, thank god!, I’ll tell you – shaking hands, sweats & chills, often at the same time, exhausted but couldn’t lay down for more than about 5 minutes before the bone-aching, bone crawling, intensity of horribleness I can’t find words for set in and I had to get up, agitation (small word – means a lot when you’re feeling it!), headache,  insomnia, nausea,  you get the idea. Horribleness.

I’ve been all kinds of sick. There is nothing quite like withdrawal. And “they” say withdrawal from methadone is worse than from pretty much anything else except barbiturates (that can kill you).

So last night I took my dose not quite 24 hours after the 28 hour dose, and two klonopin, which really helps with withdrawal a lot, and my short acting narcotic, oxycodone… and in a short while, maybe an hour or two, I was feeling much much better.

Except it didn’t last. Despite ambien, too, I only slept about 5 hours, woke up for about 3 hours, slept another hour or so with those so odd withdrawal dreams, woke up completely drenched in sweat, and have been awake and the withdrawal getting worse again ever since. In and out of bed, pacing, hands shaking, the whole shebang. (where do you think that word came from – shebang?)

I thought maybe a nice big dose of vitamin B12 would help, and I am supposed to do B12 injections twice a week and was due for one anyway, but my hands were shaking so bad I could hardly get the needle in. Finally managed it after three tries.

Decided I needed to follow the doc’s advice – she told me if I was having “bad days” during the discontinuation process that it was really okay to go ahead and have another dose… so I did, I took my last dose at 8pm last night and another at 1pm before I sat down here to blog my aggravation out. So that would put it at 17 hours between doses, which was close to what I was at before I screwed it all up, since I was at 18 hours between doses. And took a klonopin. And my short acting narcotic.

Guess what? In the nearly an hour since then,  I’m already feeling better.  It’s not the methadone yet, as that will be gradual over the next couple days, it’s mostly the klonopin & the oxycodone. I don’t feel nearly so much like killing someone.  Always a good thing. Or like beating on my legs, which is what I was doing before I took it all, because there’s this so bizarre feeling you get like there’s something crawling on your bones, kind of…

Ya know, there’s a reason they take heroin addicts and put them on methadone – so they don’t have to go through heroin withdrawal. It just shifts the body’s dependence. And, when you are taking methadone, not only do you NOT feel high like you do when you shoot heroin, you CAN’T feel high if you do go ahead and shoot up – the methadone blocks the receptors in the brain that would otherwise allow the heroin to get in and make a person high.

I guess the concept here is the heroin addict learns to live without the escape of getting high, and without the incentive to go out and do bad things to get money to buy more heroin. But there really has got to be a better way. Most ex-heroin addicts stay addicted to methadone, for the simple reason that it’s a royal pain in everywhere to get off of.

Not only does methadone discontinuation have to be done very slowly, there’s also something called PAWS – Post Addiction Withdrawal Syndrome. Essentially, the brain has become dependent on the methadone for pain relief, and it’s affected the brain’s neurochemical makeup in such a way that even once you get off the methadone, you can get episodes of the withdrawal symptoms – mild ones like the hand tremors, dreams, etc. – plus have an increased perception of pain for months and months afterward. That’s one reason it’s done slowly – to help the brain adjust.

You know, the last few times I’ve been to the doctor, they’ve taken the news of my progress in getting off the methadone with something like amazement – although to me, it’s seemed agonizingly slow – I started in January! So I guess, from that, I should feel really good that I’ve managed to go from 50mg to (almost) 2.5mg a day. Except I don’t, really. I just feel frustrated.

Guess this is a life lesson in patience.

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So I saw my neurologist yesterday. It was interesting. I’ve never liked her. I like her even less now.

I was scheduled to just get an Occipital Nerve Block (ONB), which is injections into the back of the head and side of the neck with a local anesthetic and a type of cortisone called betamethasone. They do one side at a time – ie. I had to pick which side was the most painful for her to inject into it. The idea is that the cortisone will decrease inflammation and irritation around the nerves because the nerves there – even though they’re on the back of the head – can cause headaches all the way to the front of the head – mine are usually centered on my eyebrows.

My first priority was to talk to her about the florinef, my discovery of it as a primary factor in the migraines, how I came to figure it out, my BP readings from 3 weeks, and the changes I made to my meds without anyone telling me to – stopping the florinef, and taking both the BP medicine she prescribed but also another BP medicine that I used to be on, in my attempt at getting the headaches under control.

She followed along as I described the events, and was fine with me stopping the florinef and I guess happy I figured it out – she said it made sense. But she wasn’t happy that I was taking more BP medicine than was prescribed. However, she did say my BP was still running higher than it should be and is likely contributing to the damned headache – I’ve had one constantly, non-stop, since January!

I told her I wanted to increase the BP medicine she had prescribed, and she was fine with that and wrote the RX.

She wasn’t happy when I told her I knew florinef can cause things like an enlarged heart, which I think it has (she said to see my PCP, who is out sick & I told her that – but she didn’t bother to take a listen or anything), and that I was worried about the increased intercranial pressure having caused an aneurysm. I mentioned I’d been researching my meds online and had seen this listed, and she replied “Well! That’s why we don’t go online, now isn’t it?!” Then insisted it could not cause an aneurysm.

She also insisted she’d never heard of Lyrica or neurontin causing incontinence – she wanted to know why I take small doses of each (they are nearly the same thing) instead of a larger dose of one. It’s listed as a side effect – but no one told me that and that’s another thing I had to figure out on my own.

Power. It’s all about power. She’s the type of doctor who wants to be in control of her patient, and she did not like it at all that I was one who actually has a brain and knows how to use it.

My other doctors are not like this – they see me as a partner in figuring out how to get me healthy and welcome my suggestions and discoveries.

After she did the nerve block (intensely painful), she came back in and asked me again why I’d decided to up the BP medicine without talking to a doctor. I explained that I had just seen her, the nurse-practitioner at my rhuematologist’s office, and my PCP, and yet no one had figured out that the getting-worse-daily, non-stop, life-altering, my-head-is-gonna-explode, intense migraines were in fact being made much, much worse by the florinef, which has side effects listed as severe headaches, the increased intercranial pressure, etc. And that I was feeling a little “miffed” at my doctors.

She just couldn’t get it.

I felt like someone was driving nails into my skull for months and yet none of my docs figured it out. I had to figure it out myself. And she couldn’t understand why I’d be a little “miffed.” It baffled her.

Still having the headache, BTW, but it’s definitely  much better since I stopped the florinef. I’ve even been able to turn the TV on and watch a little – hadn’t even turned it on for like nine months because it always triggered a migraine.

So, that’s how we left it – the first ONB is a test of sorts. It takes 3 – 5 days for the cortisone to have any effect. In the meantime, I hurt big time – my neck feels horrible and have had a headache/migraine all day. If I feel like it’s helped, then I go in to do the other side. And likely go in a week later and have the first side done again, up to four times a side. But she doesn’t think it will help.

I did have the ONB’s before, and I’m pretty sure they helped. But apparently, the longer you’ve been having headaches, the less likely they are to help. And I’ve been in a nearly continuous state of headache at some level for over a year, with frequent (ie. 3 – 4 times a week) migraines that increased to near daily migraines that don’t respond to much of anything.

We’ll see how it goes, I guess.

Maybe I’ll start looking for a headache clinic – apparently those exist in some places.

How did I learn that?

Online – that place she doesn’t want me to go!

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I am so not me. This thing that I’ve become, that my body has become, this is NOT me! And I’ve just discovered I’m really angry about that!

Have to give it to the Methadone – yeah, it was great at blocking the pain. Methadone is used in chronic pain patients because it does not make you high like other narcotics. But what I do think it did do was make me numb… and numb-er… to the state of my life, my lack of a life, my nonexistent quality of life.

Now I’m almost free of it, the Methadone – and in withdrawal from dropping it from 5mg to 2.5mg a day. Given I was at 50mg you’d think there wouldn’t be much withdrawal but there is. And withdrawal always means raging emotions.

Mostly, there’s anger.

My mom has always said I’ve complained less than anyone else would about being chronically ill. Maybe that’s true. Maybe because I was numb.

I never thought it would last this long. I got sick in Dec. 1998. Do the math.

It’s eaten up, this illness has eaten, devoured, almost 12 years of my life.

Gone. Life, real life,  stopped when I got sick.

This is me, the real me:

By My Pickup - Maybe 1986 or so?

Weaving, 1987

Me & Zabe the Wolf

Christmas, 1991, With My Brother

And this one, this one is really, really me – my fav pic ever. I had just finished racing bareback across the pasture several times with my beloved Standardbred mare, Cherokee. One of the happiest moments of my life:

Me & Cherokee, about 1988

I used to be strong. I rode horses, could lift a bale of hay with ease, carry 40# bags of dog food up a crazy steep hill to the house, hike or ski or ride for hours…

But this me I am now, always worried about the weather causing migraines, or being too tired to make it through an entire grocery run, my back hurting too bad to even sweep the floor, never able to make plans because I never know how I’ll feel on a given day…

This is most assuredly not me.

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