The Song In My Bones (Dealing With Pain)

There is a Wisdom,
Buried deep in my bones,
A Gift,
Passed down to me,
From Ancestors of Old.

Today we call it a curse,
And fight and rail,
We give it names,
Arthritis and Migraine,
And call the wild Wisdom,
By another name: Pain.

But, is it, really,
Just the song my bones knows?

5,000 years ago…

…I would have been honored amongst my Tribe. I would have warned my People four hours ago that a change in the weather was coming, something I knew because I felt the change coming in my ears, my head. We would have had time to take shelter before the raging winds arrived, as they have now.

…I would be warning my Tribe now that an even bigger change was coming. I feel it, in my bones – in the bad knee and shoulder that suddenly twinge, and the deep ache in my bones growing sharper by the moment.

My bones know. They are singing to me, singing of the changes to come.

Tomorrow, the temperature here will drop from 35 degrees to something-below-zero, with wind chills of -30 degrees.

My bones are telling me that, a Gift that could have meant the life or death of my Tribe.

I can tell you when rain is within 50 miles and headed this way, whatever the season, by the pang in my shoulder. There was a time when that would have been very useful.

Now, I have no need of this life-saving Gift. Who does? We have the Weather Channel, and weather apps on our fones.

But maybe, it’s time I stopped complaining about the “pain” of my “reactive inflammatory arthritis” and “weather migraines,” and started thanking my body for giving me the warnings it was meant to give me.

It is only my body singing to me with ancient Wisdom.

Maybe, it’s time I started just listening, just being with the sensations, without labeling them as “pain,” and instead, think about what they would have meant a thousand, or five thousand, years ago.

Survival. Life. Or, death.

Maybe, it’s time I stopped running away, and just lay still, curled up, and listened to the Wisdom buried deep in my body.

I think it has a lot to say.

I wrote that last night, but then didn’t post it.
I was too busy, listening to my bones sing.

There is a craft to this, the listening, one I’m sure our ancient ancestors refined. Just as I know the approach of rain by my very reliable shoulder, what exactly was the singing in my ribs, my bad knee, then most of my bones, even into my hands, telling me last night? If I had no weather app on my fone, I would need to know.

Waking far too early this morning, writhing from the ache in my bones, with pressure in my head, I knew the temperature was soon to start its drop and more change was coming. I could hear the wind roaring outside. When I got up, I discovered that yesterday’s mild south winds, that had changed to west winds last night, were now hard and gusting even harder from the north.

My mind flashed back to reading about the “polar vortex” and coming “arctic plunge,” with temperatures so low that “if you are younger than 40 you likely won’t remember anything this cold.” I put that out of mind.

Why stay awake and thrash and fight the “pain,” when it is only my bones singing to me, with the ancient Wisdom, as the bodies of some have done for countless generations before me?

Instead, I thanked my wonderous body for the warning, and told it that I understood why my bones were singing, the Wisdom it was sharing with me.

Muscles relaxed instead of spasmed.
The song became a lullabye.
And then, I went peacefully back to sleep.

It will take time to break long-engrained habits – the tightening of muscles around the signals my body is sending, the labeling of those signals always as “pain,” fighting and avoiding them, causing my body to only send them out louder and stronger, more urgently. But, it’s a start.

I’ve wondered before if weather-related migraines were an evolutionary advantage – if a small proportion of members of a tribe had them, they would have been, I think.

But, I never tried to consciously work with my body, to acknowledge that its messages were received, other than to say, “yeah, that part hurts, I understand, you can shut up about it now.” The flare of inflammatory arthritis I’ve been having has given me a new incentive to work on how I deal with “pain,” and acknowledging it while in deep relaxation does help – to a point.

Maybe, only “to a point” because I wasn’t acknowledging the whole message.

Yes, my wise body, I hear the song in my bones now, and I understand. You’re right, a big change in the weather is coming, a dangerous one. Thank you for warning me. I am safe, warm, and protected – and listening.

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How I Ruined Election Night But Learned Something Valuable In The Process

We had been following The Election – you know, the one billed as the most important in decades – for months. Sifted thru dozens of mailings. Watched all the debates. Read article after article. Signed petition after petition. Seen hundreds of facebook postings about it.

It had all come down to this moment.

We were psyched!!!

Election night!

And I utterly ruined it, for both of us!

But, in exploring what happened, I learned some valuable things that will help me, and also might help you, if you have migraines.

Let me explain…

It had been a long day.

First, voting – so important in this battleground state.
Then, Rhiannon & I headed to town for some errands. We stayed out a bit longer than we should have.

I was really tired when I climbed into bed & turned on CNN.

Generally speaking, I don’t watch TV anymore – too many migraines. Back when I could, though, I had designed & had had built a combination bed/storage loft/entertainment center. A very big TV resides right at the end of my bed, along with the Tivo DVR, DVD player, etc (this will matter later).

So there I was, exhausted but excited, anxiously watching the Red states & Blue states come up on the screen as CNN discussed them (this, too, will matter).

I had previously paused the DVR for 30 minutes so I could fast forward through commercials, but they weren’t having too many. As it neared 11:30PM, I started fast forwarding on the slowest setting, so I could follow along with what states they were calling for which candidate (this will matter a lot).

A succession of Blue & Red states flashed over the screen faster as I watched, and then I spotted the announcement we’d been waiting months for:

CNN was projecting a winner in the Presidential Election!

“Rhiannon, you’ve got to see this!!!” I called.

Rhiannon has been following the election as closely as I have, and I re-wound it a bit so we could see the crucial moment together.

Nausea, dizziness, and double-vision suddenly rose up out of nowhere as I hit PLAY on the remote. My eyelids wouldn’t stay open and I felt extremely confused.

Rhiannon watched the announcement, and turned happily to me, only to find…

I was out like a light.

But I had been talking to her a moment before… wtf? So she called my name, and my eyelids fluttered & I mumbled. Alarmed, she yelled:

“MOM!!!”

I remember that – the concern in her voice, the fear. The rest of the next hour is pretty dang hazy. Some things I remembered after Rhiannon reminded me, but some things are a total blank.

Rhiannon took charge – she knows I have Neurally Mediated Hypotension (POTS), so she thought maybe my blood pressure had tanked. She loudly demanded to know where my blood pressure machine was, and I was able to point to the side of the bed… barely.

My arm was limp when she took it and pulled up my sleeve & took my bp. It was low, but has certainly been lower without causing unconsciousness.

I slowly started to be able to keep my eyes open more, to respond more clearly. I was only totally out of it for about 3 or 4 minutes.

But the incredibly distorted double-vision, dizziness, nausea, difficulty staying awake, incoordination, and impaired cognitive functioning, stuck around, slowly dissipating over the next hour.

By the time Romney gave his concession speech, I was back to “my normal,” and pretty sure what had happened.

I reassured the very concerned (to put it lightly) Rhiannon that I was okay, and that I thought it was “just a seizure… and I’ve had them before, although not for years.”

I’ve never been diagnosed with a seizure disorder or epilepsy. But some years back, the last time was likely in 2006, I had several similiar episodes. They did the whole workup – EEG, MRI, etc, and came up with nothing, so it never got officially diagnosed.

Some reading over at The Epilepsy Foundation helped me understand why it happened just then, just that night, and why it was always before at night, too, always when I was watching TV using the DVR.

It seems that some people are prone to seizures only when under certain visual stimuli – flashing lights, in particular. And even more particular (and fascinating), the colors red & blue are known to stimulate seizures more often than any other colors.

Remember how I said my TV’s location mattered? Well, it does. It takes up a lot of my visual field. And, it was dark in the room behind it, so there was a lot of contrast between the brightness of the TV and the surrounding area.

Just as important is the number of flashes per minute, and I was fast forwarding through the DVR on its slowest setting, while those red & blue states flashed up & down on the screen.

All things that mattered, as did the fact I was already exhausted from having been out that day. A perfect storm for a photosensitive seizure.

Interestingly, photosensitive seizures are related to photosensitive migraines.

They both seem to involve an overload in the visual processing center, although how this works is poorly understood.

Flickering or flashing lights can trigger a migraine or make one worse for many more people than will have photosensitive seizures – and not just from TV’s, of course. Flickering fluorescent lights, computer screens, or natural light can all cause problems.

The sun flickering through the trees as I drive or ride in the car drives me absolutely nuts, and can quickly trigger a migraine, or make an existing migraine much worse.

I’m going to try this simple trick to see if it helps with my migraine photosensitivity:

Cover one eye (either one) with one hand until the stimulus is over. Closing both eyes or turning your eyes in another direction will not help.
– from The Epilepsy Foundation – Photosensitivity and Seizures

This reduces the field of vision by 50%.
And, as is further explained:

Monocular vision (covering one eye) is a most useful practice because it works in most circumstances and still allows the subject to see. It is important to know that just closing the eyes does not prevent photosensitive reactions because the red-tinted light filtering through the eyelids will be just as provocative, if not more.
– from Shedding Light On Photosensitivity

The other thing I learned was that if you have a seizure and have not been diagnosed with a seizure disorder, you will be asked repeatedly by every person you speak with at your doctor’s office why you didn’t go to the ER or call 911. I couldn’t exactly drive myself, and Rhiannon did have her phone in hand contemplating the call.

But I was “out” only a few minutes, and recognised the feeling from previous experience – and told her I was okay. I did go to the doctor yesterday, and they’ve drawn blood for labs, but by the time I got there I had already diagnosed it myself as a photosensitive seizure. I’m to follow-up with my neurologist & get an EEG.

So, while my unexpected reaction to the Election results pretty much ruined the evening for us, it did provide an opportunity for me to learn not just about seizures, but also photosensitivity in general. This might help me and, hopefully, others, as we struggle with our migraines. Everything happens for a reason…

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