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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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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…

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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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For some time now, since the “protein wasting,” also called muscle wasting, and unintentional, major weight loss started, two years ago or so, we’ve been refering to my overall health status as “precariously balanced.”

When I say “we,” I don’t just mean Rhiannon & I, but also, my doctors. We are a team, working collaboratively to keep me alive & as functional as possible.

But my body is precariously balanced, like a scale or these stones, and every decision, whether to add meds, subtract meds, change my diet or supplements, had to be figured into how it would impact the overall balance of my body.

So precarious is the balance, there is no room for error anymore.

The two most important factors became:

  • Stop the weight loss and the muscle wasting. This is likely, at least in part, because of the adrenal exhaustion. The body tries to save energy by shutting down digestion, and scavaging from muscle, which releases all sorts of toxins, as well as being generally disconcerting.
  • Don’t stress out, not over anything, since my adrenals are already exhausted, and we didn’t want them to get worse.
  • Over the last two months, however, all hell broke out in our life, and the balance is really teetering.

    The re-cap, for those who missed it:

    First, adrenal issues became worse, my mom moved and my shoulder disintegrated (SLAP tear – a Very Bad Thing). Then, Rhiannon’s father became critically ill, and after a week of complications, he passed away. I made a decision to take Rhiannon to Ohio (could hardly have been more stressful – thank goodness for the loving support of our friend, Kathy, with whom we stayed) knowing full well the ramifications for my body would not be good, and it could “push me over the edge.”

    Since we returned, I’ve been resting, resting, resting. Eating, a lot. But also having disturbing, and sometimes, frightening, new symptoms, that have led to multiple doctor visits & consultations.

    Here’s where I stand (err, lay):

  • Most disconcerting, I have lost 5 very precious pounds since my visit with my PCP 4 weeks ago, despite taking our blender & “medical shake” mix & assorted edibles to Ohio, and eating a fair amount at Kathy’s home.
  • New symptoms include episodes of extreme weakness & shakiness, often with trembling.
  • My brain tends to go into shut-down mode when this happens, and I get what Rhiannon calls the “lost puppy look.” If we are out (have had to go out for multiple doctor visits plus groceries, etc) she will take me by the arm & guide me out of the store. I have limited comprehension when this happens, way beyond brain fog. This is not entirely new. What is new is the quickness with which it happens, after just moments on my feet.
  • Something has definitely tilted in my adrenal system. I seem to respond to even tiny annoyances with a dump of adrenaline that induces the fight/flight reaction – usually, fight. In other words, I find myself getting really angry a lot over stupid shit that wouldn’t have bothered me before.
  • There is also The Hunger. The ravenous, give me food NOW or I WILL KILL YOU Hunger. This is certainly very, very new, since a month ago I was still forcing myself to eat. The Hunger comes on very fast, demanding to be satisfied immediately. It’s a very bizarre feeling. I’m craving sugar, salt, carbs, meat… and if The Hunger is demanding to be satisfied, there’s not much I can do to stop myself from stuffing my mouth with whatever’s easiest. Rhiannon has hidden the chocolate & sugary foods, since they aren’t good for me, and just feed the yeast (candida).
  • What my medical team thinks:

  • Knowing that I was in adrenal exhaustion before all this happened, and being very tuned into my body, I became very concerned that I was teetering on the edge of adrenal insufficiancy. Many of the symptoms I’ve been having are very typical of that. My medical team agreed.
  • The biggest concern with adrenal issues is adrenal crisis, which can be life threatening, and develop quite suddenly. Rhiannon has instructions on when to call 911 or take me to the ER, but hopefully we’ve headed that off.
  • Hypoglycemia (low blood sugar) is also a concern, and I had this as a teenager. It could account for some of the shakiness & trembling.
  • What we’re doing:

  • Many labs were drawn yesterday. I’m having a lot of bruising, so am concerned the leukopenia is back. Who knows what else will show up.
  • My PCP prescribed a glucometer (those things diabetics use to test their blood sugar) and wants me to check mine several times a day to watch for hypoglycemia.
  • My cortef (hydrocortisone), which I started on only a month ago to treat the adrenal exhaustion, originally at 5mg in the morning & 2.5mg in the afternoon, has been doubled. This is not a large dose. My adrenals should be making cortisol (the body’s equivilant) but they are not. This dose is just to replace what is missing, as cortisol is essential for the functioning of the human body. I definitely feel better on a higher dose.
  • I had been taking florinef (fludrocortisone) only as needed, a half tab every 10 days or so, but until my body stabilizes, I need more. This is to treat Neurally Mediated Hypotension (NMH), aka POTS. It is commonly seen in both ME/CFS patients as well as patients with adrenal issues, and is associated with very low blood volume.
  • I’ve started monitoring my protein & calorie intake again with an app on my phone. It has a goal weight for me as well as my current weight, and tells me how many calories I need to eat to gain weight. It’s pretty cool – even has a barcode scanner.
  • I started on Topamax a month ago at 25mg for a week, then 50mg for 3 weeks, always at night. This is the one & only thing we hadn’t tried for migraines, and we hadn’t tried it because it can cause weight loss in some patients. But it does seem to be helping with the number of migraines & their intensity, so we’re sticking with it, and bumping me up to 75 mg, the level most patients need to see real improvement in migraines. Some need much more. It makes me very sleepy & incredibly loopy, much to Rhiannon & Ben’s amusement.
  • Mostly, I’m just resting, staying cool, well hydrated, eating a lot, meditating & deep breathing to reduce stress, and trying to relax & let my body regain its delicate balance. It’s going to take a while, perhaps a long while.

    My shoulder still has to be dealt with, but not now, I can’t take the stress, whether of surgery or going out to see the orthopedist or having the MRI. So I’m dealing with the pain, which is pretty bad, hoping that the “sub-chondral loosency” that showed on the xray, and can mean the bone is getting necrotic, is not getting worse. I’ve already had one necrotic bone, so it does need attention as soon as I can safely go out.

    Deep breathing. Not thinking about it.
    Remembering how many friends & family members are out there showering me with Love and good energy…

    …thank you!

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    This Routine

    This Routine is all too familiar.
    Afternoon sun hits my shaded eyes
    Like a boxer hitting his opponent.
    It hurts.
    I see it coming.

    This Routine is all too familiar.
    Dog claws click on floor,
    Spoon taps bowl,
    My muscles twitch.
    I hear its approach.

    This Routine is all too familiar.
    Waves of nausea
    Crash over me.
    Wipeout.
    I feel it swamp me.

    This Routine is all too familiar.
    Say, “I’m sorry,
    “I’m going to the bad place.”
    And close my door.
    She knows this so well.

    This Routine is all too familiar.
    My day is done.
    Now it is
    Migraine’s day.
    Out of my hands.

    This Routine is all too familiar.
    Swallow meds,
    Zofran under my tongue.
    Bowl beside my head.
    Try to soften the blow.

    This Routine is all too familiar.
    Tummy Mint tea cools,
    Spearmint oil soothes,
    Stones ground me.

    This Routine is all too familiar.
    Curl up, stay still.
    Close eyes.
    Breathe deep.
    Ignore the explosive pain.

    This Routine is all too familiar.
    Listen to the pounding
    Pulse in my ears,
    The neverending whine.
    Soundtrack of my life.

    This Routine is all too familiar.
    Door opens softly,
    Muscles twitch anyway.
    “Is there anything you need?”
    Not now, maybe later.

    This Routine is all too familiar.
    The neighbors’ dogs bicker,
    Birds’ evening calls,
    So loud I recoil.
    Silence is needed.

    This Routine is all too familiar.
    Breathe deep and slow.
    Controlled descent.
    Where shall I go?
    Far away from here.

    This Routine is all too familiar.

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    Last week, I saw my LLMD (Lyme Literate MD) again, and left after spending an hour with her, in shock & dismay. Where neither my PCP or neurologist have any ideas really where else to go with my deteriorating health, other than the “band-aid” approach – treating the symptoms as best we can – my LLMD has a very strong opinion of how to get to the root of the problem, the actual cause, and how to treat it.

    But I don’t like it much. That’s not to say I think she’s wrong, but rather, that it scares me shitless to go down this path again.

    I’ve been seeing her for 12 years, and I’ve been a very frustrating patient for her, by my continuing to stay very ill, slowly spiralling downward. She told me that she’s learned a lot from me & how I’ve reacted to some treatments we’ve tried, and she wished that she had known all that she knows now when she first started treating me.

    We will call her Dr Z, and if you’ve seen the amazing Lyme disease documentary, Under Our Skin, then you’ve seen her, sort-of. She appears in outline, in shadow, as at the time of the filming she was being investigated by the state medical board for long term IV antibiotic use in Lyme patients. She was cleared of all charges, btw.

    The Past
    When I started seeing her all those years ago, she immediately suspected Lyme, along with a host of other things (EBV, HHV’s, Parvo B19, Mycoplasma, etc), and all her intuitive guesses eventually panned out. Getting a positive Lyme test took a loooong time, and after years of oral antibiotics, we finally got one, and I finally agreed to getting a PICC line & undergoing IV Rocephin for a solid year, from 6/06 to 6/07.

    It didn’t go well, in some regards. She had told me to expect to be sicker than I’d ever been in my life, sicker than I could even imagine, and I was. I lost my business, then almost 10 years old, as I became completely bedbound except for shaky trips to the bathroom. It eased up in intensity towards the end, but I’ve stayed primarily housebound ever since.

    And ultimately, we’re pretty sure we didn’t get all the Lyme. Knocked them down by a lot, but they’re tricky suckers to kill, adept at hiding out in lots of places.

    Present
    Fast forward to now, and I’m living with chronic daily headaches, migraines, which are increasing in intensity. I’m also constantly nauseated, lack an appetite, increasing pain from reactive arthritis, overwhelming exhaustion, swollen glands, sore throats, gut issues, etc etc etc.

    It is the daily migraines with accompanying light & sound sensitivity & nausea that are really my biggest problem, as it is because of those that I: #1 regularily want to blow my brains out just so it will stop hurting, and #2 am simply not eating enough, which has led to a weight loss we can’t stop, and me being 111 pounds with increasing loss of muscle.

    As my doctor visit unfolded, we discussed all these symptoms, and Dr Z says to me that I’m describing Bartonellosis, another of the tick-borne diseases. Her theory is that with all the oral antibiotics I took plus the IV rocephin, which is not specific for Bartonella but will knock down some of them, that I’ve had “Bart” all along. Wisdom she’s learned over the last decade is that you have to eliminate the Lyme co-infections & parasites as well as detox prior to tackling the Lyme.

    So her plan is, before I lose even more weight & get any weaker than I already am, to get me a PICC line and on IV antibiotics for the Bart. Assuming insurance will approve it.

    I asked her, flat out, if she thought I was really strong enough to go through this. She said yes, that she has two patients being treated for Bart right now who weighed 80# when they started, and within 6 -8 weeks their headaches had resolved, and they’ve each gained over 20#.

    In the meantime, we’ve already done a trial dose of the Invanz, sent blood to MDL to check for Lyme, Babesia, Bartonella, and other tick-borne diseases, plus had 25 tubes of blood drawn at Labcorp for a host of other tests.

    I’ve also started on “medical shakes” – highly nutritious & containing a broad spectrum of vitamins, minerals, amino acids, and herbs, especially geared to healing my leaky gut, detoxing, and stopping any further weight loss.

    As I write this, my head is pounding away, and I’m hooked up to a Holter heart monitor, something my PCP set up, along with the echocardiogram I had Friday.

    The Fallout
    I’m scared. No, I’m repelled by the mere thought of getting another PICC line, and doing more IV antibiotics. That’s all there is to it. Dr Z says the flare to be expected won’t be as bad as that from the Rocephin, and it’s likely I won’t be on it as long, maybe around 4 months, depending on how I do. And she says she has tricks up her sleeve now, things she can do to minimize the flare.

    But my previous experience with the IV antibiotics, which very nearly killed me, has me pre-conditioned to want nothing at all to do with more antibiotics.

    On the other hand, there’s not really another choice. We’ve been flailing around trying to stop these migraines for years, and they just keep getting worse, and I just keep getting weaker.

    Its pretty much a do or die. This is the only hope of any improvement anyone has for me. My neuro shakes her head & gives me a sad look and says she’s not going to lie to me and tell me she thinks there’s some magic pill out there that is going to make the migraines go away. My PCP is terrific, and had suggested the medical shakes at my last visit, but other than treating the symptoms, she has no ideas for what else we can do.

    A Dose of Radical Honesty
    By now, you likely already know that I’m all about telling it like it is, no holding back, nothing unsaid. Radical honesty, even if it hurts to hear it.

    The truth is, I’ve been sick a very long time. Fighting Lyme & its co-infections, the ME/CFS (which my LLMD thinks is caused by the Lyme & its friends), the constant pain. And that really wears you down.

    I love this world we live in, love watching nature, the seasons change, and I love my family, very much, and my spirit sisters. But were it not for Rhiannon, my 17-going-on-50 year old daughter, I don’t think I would even be here trying to wrap my head around this. In so many ways, it would be easier to just give up.

    But she needs me, for as long as possible. And I owe it to her to do whatever it takes to make that happen.

    And as she pointed out to me, when I expressed these thoughts to her, wouldn’t it be nice to be rid of these headaches? Wouldn’t it be nice to be able to go see a movie again? Or even just to watch tv again? Or to talk on the phone without my mother’s voice causing me to flinch with pain? To have the windows open and be able to listen joyfully to the neighbor’s children playing instead of wincing at every high-pitched squeal of delight? Wouldn’t it be nice to go for long drives on the Skyline Drive like we used to, without having to worry about the ever present migraine being made worse by sun flickering through trees?

    Yes. Yes, it would indeed.


    If you have experienced a similar situation, I’d love to hear about it, whether good or bad! Please, leave a comment below, or you can message me privately on Facebook – link up top on the right. Thank you for reading, caring, and sharing your thoughts!

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    Laying curled up in bed tonight, I suffered through yet another severe migraine. This time, I asked myself exactly what my body was trying to tell me, and, more importantly, why??? I think I found the answer…


    Imagine:

    It is sometime during what is commonly called the Stone Age. Small groups of people, hunter-gatherers, spread out across the face of the Earth.

    You are travelling with such a group, gathering ripe raspberries from a thicket. You begin to notice strange flashing lights around the edges of your vision. (The migraine warning aura).

    This has happened to you many times before, and you know what it means; a weather front is coming, quite likely with strong storms. You know you have only a short time to get to safety – you do not want to be on an exposed hill. You need to find shelter from the coming storm, protection from pounding rain, howling winds, and crashing lightning.

    The pain starts soon after, a deep throbbing behind your eyes. (Pain is the body’s messenger, it’s way of telling us to stop what we are doing.)

    As your group hunts for a place to ride out the storm, your body continues to send you warning signals: light begins to seem too bright, and you instinctively respond by wanting to find a dark, sheltered, location. When the first lightning strikes you will recoil from the increased pain it causes.

    Sounds, too, become suddenly louder to you. The crunch of a branch underfoot causes a sudden increase in your pulse – that pounding in your ears. (Adenaline is being released, triggering your flight-or-fight response.)

    You become nauseated, and lack interest in eating. You may even throw-up. You wouldn’t want to have a full belly if you suddenly had to run for your life.

    Once safely in shelter, you instinctually huddle in a ball. Your shoulders creep upward, providing protection for your neck. (Protect your vital organs is your top survival instinct.)

    The fear & anxiety caused by any slightest bit of sound or light (photo- & phono-phobias) cause you to be hyper-vigilent. You hear the tiniest of sounds, and actually feel your body respond to them with twitches & readiness to flee before your mind can process the nature of the sound or light. Were it the click of a pedator’s claw you hear, or the flash of lightning, you would be ready to move or fight. Falling rain can be noisy – the ability to detect the slightest sound approaching you might save your life.

    Even your sense of smell is heightened, important when rain, fog or wind could dampen the scent of something dangerous coming towards you, and useful in discerning whether a cave you investigate for shelter is the lair of a cave lion or bear.

    Stoked with adrenaline, sleep is hard to come by. You remain ready for any eventuality all night.


    Our hypothetical story was likely repeated hundreds of thousands of times during early humans two million years of nomadic existence. People who had migraines would have had a higher incidence of survival, equipped with an early warning of weather changes & able to seek shelter, and with heightened senses to alert them of any approaching danger.

    If so, it is enshrined deep in our psyche, buried in the instinctual mind. This would explain why millions of people get migraines, and all the weird sensory changes that accompany them – something that, so far, scientists have no answer for.

    After reflecting on this, the possible evolutionary origins of migraines, one of the biggest banes of my life, I decided on a course of action.

    My understanding is that the human body sends us pain signals as a way to get our attention, and tell us to stop what we’re doing. If we ignore those pain signals, the body screams with pain even louder. To reduce the pain, we first have to consciously ackowledge it.

    Laying in bed in a dark room while everyone else tiptoes around us does not solve anything, as anyone who gets migraines knows. The simple click of my own dogs’ claws on the floor outside my closed door set off more cringes of sound-induced fear (yes, fear – migraineurs get photo-phobia & phono-phobia). And they really are cringes – I feel sound before I actually hear it, or, at least, before my mind identifies it.

    So I started talking to myself, things like, “Yes, I know there’s a storm coming, but I am very safe from harm here,” and, “There is nothing to be afraid of,” and, simply, “I am very safe.”

    I pulled my shoulders down from my ears, and, repeating to myself, “I am very safe,” removed myself from bed. I went out to sit on our porch, watching the lightning play on the horizon. I noticed my arms were folded tightly across my belly, and relaxed them, let them fall to my sides, and repeated, “I welcome the rain. There is nothing to be afraid of. I am very safe & protected here.”

    The pain & anxiety the migraine was causing was greatly reduced almost immediately. It wasn’t gone, but it was certainly better, especially since I’d been laying in bed afraid to move a muscle lest I puke.

    I also took a good sized dose of Klonopin (clonazapam), an anti-anxiety medication, while going, “Oh! So that’s why ambien often helps my migraines!” – take ambien & stay awake & you get very relaxed & happy, which is why teens use it as a party drug.

    Everyone experiences migraines slightly differently, and there are the weather-related migraines (which 90% of mine are), the hormonal migraines (hmm, telling our primal selves we need to get to a safe spot where predators won’t be able to smell the blood?), and food related migraines (telling us in emphatic ways not to eat that again).

    Whatever the trigger, you can bet I’m going to be practicing self-talk, and trying to decode the hidden messages in the pain and other symptoms. Since migraine meds almost always fail me, there’s certainly nothing to lose… except the migraine.

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