Girl, Interpreted:

I’ve started a new blog (exciting!), but I will continue to monitor - and use - this one!

My new site is also “Girl, Interpreted - getting the word out”. The new URL is: www.girlinterpreted.com.

Hope to see you there!

Migraine Awareness Month #5: “Do That to Me One More Time”

AND NOW, WITHOUT FURTHER ADO —- THE HIGHLY CELEBRATED, MOST RELIABLE, AND BEST KNOWN MIGRAINE TREATMENT KNOWN TO MAN:

                                                THE WORLD OVER!!!

HOLD ONTO YOUR SEATS, FOLKS…

RESTRAIN YOUR CHILDREN…

THOSE WITH HEART CONDITIONS MAY NEED TO LEAVE NOW…

I’d like to say that my two go-to migraine treatments work all the time. I’d also like to dazzle and amaze you with my wonderful feats of relief and good news that I always do so well in my prevention and treatment of my migraines…

But, in truth, I cannot.

You see, my migraines have not gotten better over the years; they also have not become any easier to treat, either. (In fact, they are much harder to treat now, and sometimes last much longer than before.) They are tougher – but you know what? So am I… Here goes – this is what I usually do, almost every time:

ü      Once I realize and can be sure that the next migraine storm is coming, I try to decide whether or not I can sleep, hot soak, or massage it away. This method is not without its problems: if I wait too long… well, you know; if I take a triptan right away and could’ve actually gotten better without it, I just “wasted” a $31.00 pill. I also worry about rebound. …So, “deciding” is always my tried-and-true “first thing”.

ü      My next step is actually one of the “comfort measures” you asked about. If a non-pill-invasive way looks like it’s not going to work – or if I really have waited too long (baaaadddd newwwwwwssss…) – I will go right to the triptan, usually Zomig or Relpax and pray that I really didn’t wait that long.

ü      Since I always try to avoid my bed during any kind of sickness (being isolated in bed scares the little kid in me and I end up feeling even sicker & more feeble), my go-to place is my sofa. You may have heard me mention this before, but it really does bear repeating: laying my head over the stuffed, but firm arm of my sofa seems to cut off a little blood-flow or nerve-signal drama. I get a pleasing/tingly/slightly numb feeling that definitely agrees with my headache and neck pain and works with the triptan to hopefully restore me to normal (whatever that is!). Note: if the migraine really is mild (this unfortunately doesn’t work very often since most of my headaches aren’t ever that tame), just lying this way with my giant, pulsating head draped ever-so-provocatively over my sofa’s brave right arm will nip the migraine monster right in the bud (so to speak…).

Well, there they are. These are the comfort measures that I almost always use/need/have-to-have. 

******* Thank you, Captain & Tenille, for helping me with this one *********

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

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Migraine Awareness Month #4 “June is Bustin’ Out All Over!”

For me, knowing what to do and what not to do during summer – or any other time, for that matter – is not so much a practice of mechanics as much as one of psychology.  I have a feeling that it’s like that for most migraineurs as well as others suffering from any chronic condition.

We know our triggers, we know our limitations, and we’re well aware of how careful we’re supposed to be…

The problem, then, is not one of knowing; it’s one of doing (or “not-doing”).

I find myself sometimes (ok – almost ALL the time, I admit it!) struggling with my defiance, wrestling with my better judgment, and sparring with my very-vital & wildly-alive DENIAL.

These emotions and a host of others show up every day, but tend to dominate my thoughts and feelings in the hours and days once I realize I’m getting sick. Cheerful optimism and the “self” I (thought) I know so well sits, quietly gagged in the back seat.

During those times when I’m not in severe pain – yet – anger, frustration and desperate rage take over; the choices made while these feelings are in control almost always get me into trouble, painful trouble… then – suffering. This cycle of suffering finally broke through to a “recipe” of sorts. This concoction has kept me sane, given me hope, kept my emotional balance and allowed me to enjoy more fun events and summers (the BEST time of year in my book!!) than I could when I let defiance and anger run the show. Here is my recipe for a June Is Bustin’ Out All Over (or any other time of year, if you please): 

• Know your triggers and irritants – keep that mental note – but try to retain the balance between dwelling on them and denial. Dwelling on the illness and its triggers will keep you locked in isolation, fearing any situation and never rising above it; reckless denial, though (pushed through by anger and defiance) will only get you more sickness and more bad events/memories, perpetuating the cycle.

REMEMBER:  Denial - in small amounts – fosters hope and will carry you through…

• Do take care of yourself (this is one area where denial DOES NOT belong): if you know you’re getting sick, do what you need to take care of it. Do not allow the slithering character of excessive denial talk you into ignoring your illness/upcoming attack. This type of denial also rears its slimy head when you feel embarrassed or stigmatized about your illness and have to leave a party or event early or not go at all. Allow courage to take its place and make the choice to tend to you. You really WILL thank yourself later…

DON’T FORGET:  Excessive denial will always get you into trouble.

• Plan, Plan, Plan. Remember that sometimes, you have to pick and choose. Deciding on too much fun, too much excitement and too much of anything when you’re a migraineur just doesn’t add up. I know – it’s not fair and so many don’t understand – but this is one of those facets of our reality that CANNOT be denied. To disregard it is to cheat yourself.

MOST IMPORTANT: Choose your battles (I mean, fun events) – WISELY. Planning to do LESS will equal MORE.

• Pray, Pray, Pray… Then – quietly go about your business; the answer and relief WILL come.

ALWAYS BELIEVE: Optimism, faith and perseverance will ALWAYS reward you with courage, comfort and MEANING.

• Let go of any particular outcome. This can be immensely difficult – we want things: our lives, events, others’ opinions – to go a certain way or turn out how we want. Since we’re faced with a painful, unrelenting, chronic, and often misunderstood illness, we ask, “Why?” We may never know “why”, but we must remember: how do we know that if WE each had the chance to CHOOSE, our lives would be any different or better? We can never see the whole picture from our limited perspective. We can choose to be happy and grateful for the answers we’ve waited for and received. Once we can see them, we realize they’re often better than what we thought we wanted.

FINALLY: Gratitude is a choice, but powerful in your receipt. All that you need will be yours: choose to see and accept a reality that may be different from that which you originally imagined.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

Migraine Awareness Month #3: “Just Shoot Me Now” (not really…)

Worst migraine trigger… hmmm… I can’t say that I have one. No, I guess I don’t have… ONE.

I have LOTS of trigger(s) – more than I can comfortably count. Here is my “list” complete with a short explanation and disclaimer:

   Original (old/antique/but not out-of-date) Migraine Triggers

1)      Dairy – Anything dairy: ice cream, yogurt, cottage cheese, cheese, milk, more

2)      Chocolate (crap, I LIVE for this stuff!!!)

3)      Drinking too much alcohol (but I could drink… back then – ‘nuff said)

4)      Crying - Definitely off limits – then & now

5)      Flying (not to be confused with trigger #3…)

6)      Apparently, turning 10 ½ years old: This is where my “migraine story” all began…

And Now… The New & Improved (i.e. “Worse”) Triggers

1)      Dairy – Blah, blah, blah…

2)      Chocolate – Still suffering… can’t even look at the stuff now

3)      Drinking ANY alcohol (oh, yeah – no THINKING about it, either!)

4)      Crying (too sad to think about – don’t ask)

5)      Flying (that includes airplane travel)

6)      Apparently, turning into… an “older” woman (more on this later – keep watching!)

7)      Hormones – this trigger has “something” to do with the one above, I swear! (My headaches are about as predictable as the hormones now… LITERALLY!)

8)      Nitrates, MSG, ETC (this includes almost all the “in edibles” to be found in odd places such as drive-thru dine-OUTS – go figure!)

9)      Driving (specifically on the interstate)

10)   Emotions (a sub-category of #4 – or maybe the other way around???)

11)   Temperature changes – Mostly too hot, too sandy, too many flip-flops, or having too much fun while being hot & wearing flip-flops.

12)   Schedule changes – This includes planning a trip (even to the next town); being on a trip; and thinking of being on a trip – wonderful! “Wish you were here…”

And… not to be outdone anywhere – the major, celebrated, #1 trigger … (as well as lucky #13)

13)   Fluorescent lighting – This trigger contains more sub-categories than I care to talk about: since this type of lighting is “everywhere” (coming to a home near you  - wait – COMING TO YOUR HOME SOOOOOONNNNN… reminds me of a horror flick!), it is now almost impossible  to BE “anywhere” without getting sick. For me, it takes less than 1 ½ hours to feel the worst effects of these lights – my head gets hot, my heart starts to skip (this almost always happens as I begin to get any migraine), and I get dizzy and flushed when I’m under the influence/direct gaze of fluorescent lighting.

******* End of List ********

Note & Disclaimer: There actually is another, 14^th trigger; it is very powerful, untamed, and harder to control than the Tasmanian Devil, and it takes a strong individual to deal with it…  (BE CAREFUL - NOT RESPONSIBLE FOR ACCIDENTS). Also, it is as yet un-named and is so mysterious it has an upcoming stint on “Unexplained Mysteries” as well as “America’s Most Wanted”. Here it is… this trigger is… Shhhhh (don’t scare it away):

14)   ____________________.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

Migraine Awareness Month #2: “Tea for Two”

I had my disability hearing last year. I’d been looking forward to it for more than a year before that.

The hearing didn’t go as I’d planned.

But losing my migraine disability case wasn’t the worst side effect of the hearing. Even losing the financial assistance my husband and I needed wasn’t the worst. And of course, the time spent and resources used (gasoline, eating out while being away from home, etc) really sucked, but still didn’t qualify as - “the worst”.

The worst was the reaction, ridicule, and cruel coldness written in the judge’s response and ruling in my case. The root cause: Migraine stigma & misunderstanding.

Now I know that stigma wasn’t the main cause for the judge’s ruling. No, the stigma was “only” the guiding factor in both his as well as my attorney’s mindset during the process. Mistakes – four of them – were made by my attorney and staff, and I believe those mistakes were made because my case (that I’d waited over a year to qualify for), one of migraine disability, wasn’t really taken seriously.

Records of my co morbid condition, asthma, weren’t followed up on and contained no doctor’s report: this led the judge to quote in his remarks, “She says her lungs feel, ‘warm & fuzzy’”. (This was actually one of the “nicer” of the judge’s words…) Also, two of my past neurologists made light of my headaches, one of them making outright jokes and statements about my, “…attempting to seek secondary gain because I didn’t want to work.”  The other neurologist, one I “thought” I thought highly of (??), stated that, “I don’t think she’s really that sick.”

In the final nail, so-to-speak, was an omission of a medical condition I thought might have bearing on my treatment. This condition is a heart defect placement issue – “Congenital Left Lateral Placement” – that I felt was important to include. Although my heart is normal, where it is, isn’t. I also have a lot of palpitations and heart-related symptoms before and during my migraines – and no one’s ever been able to tell me why, so I assumed that listing this as an important detail couldn’t hurt. Boy was I wrong about that one…

My cardiologist at the time decided to “leave out” any mention of this issue that I’ve been tested for (Echos, EKG’s, etc), documented to have, and gotten checkups for (at HIS office) through the years. In addition, I made an appointment two months before my disability hearing just to make sure that the documentation was correct – all in vain, since my trusty cardio completely left out any and all mention of “said heart defect”. Of course, the judge sprinted off with this, too, and I was made to look like an even sillier version of “Hypochondriac-Migraine-Hysterical-Alice-in-Wonderland Woman”. The judge’s comment for this one, “She says her heart’s ‘on the wrong side’”.  Yes, he really did put, ‘On the wrong side’ in italics (he did that for the “asthma-thing”, too…). I felt like a laughing stock, hurt, mad and more depressed than I’d been in a while – I COULD NOT stop mulling the whole thing over and over again in my head. To say I was tortured would be to trivialize the day, the event, and what felt like my whole life and definition of myself.

To say that this event set me back “a little bit” is like saying migraine feels like a paper cut. This also was not my first foray into the world of stigma, being made fun of (either behind my backside or to my front part, thank you), or of being dropped – by friends, family or so-called, doctors. These miserable happenings usually leave me feeling hysterical, frantic, and frankly, hypochondriac-like.  Most times I leave these situations feeling very broken, and really doubting my own illness – it’s the classic, “losing your power situation”. I end up feeling that I have more like a cliff to stand on than a rock, and a part of me wants to run after these “people” screaming, “Please, it REALLY IS A NEUROLOGICAL DISEASE… No, I’m not just hysterical and I DO want to work… I left college because of these migraines… Look, the medicine really does cost almost $30.00 per pill, and it’s not for PAIN, it works with serotonin and blood vessels… Wait, PLEASEEEEEEE…”

No, I haven’t actually done this … physically. But in my head, these thoughts are raging, begging, pleading, and I feel like the village idiot the whole time. Many times I think it’s because I’ve tried to change the minds of the wrong people. I give away my power to feel good about and believe in myself (remember, this disease is more than just a time and pain thief – it is a shape-shifter, and able to make you believe that you: really are a nut; you really are a hypochondriac; and you are looking for drugs…) because of my well-intentioned, but misguided attempts at education of “those who cannot listen” (sounds like a movie…).  As you can imagine, I had to take a break away from this “reality” for awhile. I needed to get my “groove back”, as they say and build back my belief in myself. Believing in myself again would restore at least a small part of the happiness and normalcy that the judge, disbelievers and doctors almost completely… deleted.  

 I took a hiatus, as they say, but my resolve and determination only came back stronger, I’m here to report.

I will say, though, that I’m a lot more careful with whom I declare my migraine-truths with now…

Now back to… TEA FOR TWO:

(Bet you thought that I would never get to the meat of today’s post – I just had to do a little ranting; I’m ok now.)

I’m not sure that I would know who to invite or talk to. Remember, this is scary territory for me (making the Migraine Community all the more attractive to me now…), and although I’ve lost some of my fear and dread about talking to just anyone, I’m still not solid on these new feet, yet.

Please don’t worry – I do get the word out, and maybe now more than ever before I speak with more conviction, more realism and more strength than I ever did before. It has helped me tremendously to “join” the rest of US, and I feel like I have migraine-backing now whenever I quote a stat or talk about a trigger. I just don’t know if I’m ready to start convincing yet… Tea is nice and cookies are even better, but will these simple foodstuffs invoke the courage I need to start talking?  

Wait, maybe I’ll just invite the whole world right now. I CAN do this…

I hope you’re reading this WORLD, because, “this post is for you”. We’ll be having tea and home baked cookies during this meeting and I want you to sit down, make yourself comfortable, and just let me do the talking. I want to tell you about migraine disease – its biology, causes, triggers and most importantly, its effects on those unlucky enough to be “blessed” with it. No, it’s not just a headache… Here, have another cookie…

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com

Migraine Awareness Month #1: “My First for the First”

I usually prepare myself to write by reading; today is no different, and as I scan the other bloggers’ stories of pain – true stories, unfortunately – I can’t help but feel their pain, fear, dread and depression. I used to avoid “peeking in” too much at the other migraineurs’ description of painful past life; painful daily life; and painful loss of life they discussed with each other. I felt I had to “look away” while they chatted and comforted themselves online: to me, becoming too much a part of all this pain and suffering made me feel that I might lose the tiny bit of footing I still had on my own (few) good days. I was too afraid to reach out for the help and camaraderie that I thought might come from just joining these people – people who were as sick as I was…and, most importantly, would BELIEVE me.

The good news is that I have joined them. I also found that I didn’t get sicker and I didn’t “absorb” their pain like I felt I might. I have absorbed their compassion, their understanding and their force – it is this force that has helped me to be stronger and to allow myself to speak up about all this pain. Being able to talk about a disease that has brought me just as much emotional suffering as physical suffering has to be more than just, “talk” – it is therapeutic. This is my first “talk” about my first migraine (as far as I can remember); here it is:

I know that my first migraine had to have happened at age 10 ½ or 11. It was 1974 but must have been spring because my young mind seemed to have made a mental note of this “event”, recalling that I wasn’t yet 11, because my birthday wouldn’t be until that July.

The most I can recall from that first headache was pain and fear that both escalated as the hours ticked on. I had never felt pain on the scale I was destined to endure that day.

My most vivid scene was sitting on the floor, facing my parents’ recliner, and shoving my head into the hard footstool-part as hard as I could. Although I didn’t know this would help, it must’ve been instinct that told me to keep jamming my skull into that chair in between fits of screaming as my head pounded and thundered under my left eye. I’m not sure how long I sat on the floor like that, but I have another memory of that same incident/attack, but this time in my bed as my mom brought me a dinner of warm chocolate chip cookies with cold milk during a lull in my vomiting. I think she must have felt that I deserved whatever I wanted since I was so scary-sick: desert became dinner.

I woke up early the next morning in what seemed to be round two of the hell I’d endured the day before: I was “sick”  again – sweating and pulsing all over as the pain rolled over my head in waves with the puking. I can’t remember how long this all lasted, but I know that it was more than just one day. I was afraid, panicked and wondered if this was what the adults described as what dying must feel like. I didn’t think I would get better, and my worry only increased the relentless pain and dry retching that I thought would now be the only thing I would ever feel again. Depression became another “first” that year.

Although I did continue to get these “bad headaches” (it was a few years before I was given the term, “migraine”), I soon found out that avoiding certain foods and airplane rides (more about that later!!) would allow me plenty of days to still “be a kid”. The headaches occurred only a few times a year at that point, but the depression that started that year with them lingered.

These two “firsts” now show up much more often, and have unfortunately become a description of ME. At age 10 ½, migraine became my “new normal”.

‘National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com ‘

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2012 Fitness & Health Conference Blogger Challenge

<a href=”http://fitnessbloggersconference.org/2012/05/blogger-challenge-and-twitter-chat/”><img title=”nwhw challenge icon” src=”http://fitnessbloggersconference.org/wp-content/uploads/2012/05/nwhw-challenge-icon-284×300.png” alt=”” width=”284″ height=”300″ /></a>

I don’t suppose you have to be terribly well-read to know that there’s a battle going on in women’s health. (Actually, this war is being waged by men, women and children, too and its effect on these younger victims is more prevalent and serious than ever before.) This EPIC as well as epidemic battle is unprecedented and loaded with scandal, money-grubbing and most importantly, misinformation.

This health crisis is the epidemic of overweight. Although overweight and eating disorders pose a major threat to women, men and children aren’t far behind in the staggering and growing statistics of this now worldwide phenomenon.

Of course, being fat and unhealthy and are not new; in fact, a large, rotund body was once admired and sought-after. Kings and Queens sported large physiques and status could be instantly determined just by looking at an individual’s size and sun-exposed skin. But trends as well as the reasons for overweight have now shifted: “fat” is now equated with poor health, bad eating habits and low-income, and its numbers have skyrocketed since those days when it was considered fashionably correct.

Adding to the seriousness of an already out-of-control health issue, being fat is now big-business. Celebrities, famous doctors, and corporations all have a stake (and “take”) on just what is takes to be ‘skinny/fit/healthy/swimsuit-ready – for the summer/for your best year ever’, and on and on and on…

There is a problem with all this: yes, it IS unhealthy to be overweight; it is an epidemic; and don’t we all look better when we fit into our jeans (?). These truths are self-evident and… true, don’t get me wrong. But the day, month, or year that losing weight, being thin, being IN became the job of corporations – big business – was the beginning of the epidemic as we know it. Here’s why:

• The dieting industry (which is now the only business in the world with a 98% failure rate) promotes the belief that none of us can really be trusted with our own health and weight. We’ve been led to believe that, without their help, we are pretty much… doomed.

• Almost all the “plans” that these dieting corporations pander involve calorie restriction that is proven to lower metabolic rate; induce psychological cravings more extreme than the original problem (see the “Minnesota Starvation Experiment”); and worst of all, promote eating disorders in any and all categories. To say that overweight is the only eating disorder is both incorrect and dangerous; becoming bulimic, anorexic or a binge-eater is hardly a fix-all to being formerly fat.

• This extreme preoccupation with weight, weight loss and dieting cannot be blamed solely on us; media, big-business, and dollar signs frame the constant conversation. The well-advertised and influential in our culture are keeping the obsession alive and helping to raise its proportions to never-before seen levels of hype. This hype does nothing to remedy the serious issue of overweight and its health effects, and in fact, makes losing weight more difficult and creates an even harder psychological problem to correct down the road (after all the failed dieting attempts).

My interest and knowledge in all matters weighty didn’t come easy – or quick. I was anorexic for over nine years, but I can’t blame it on the dieting industry, Super-sized meals or from being overweight (my dive into the eating disorder pool started in the late ‘70’s, well before big business made a living out of it). I made the decision at age 14 to go on a diet with my best friend: she lost weight; I became obsessed with it. My circumstances at that point changed in a way that I can only describe as life-altering. I learned the hard way and have now come full-circle; I’m no longer food-obsessed, anorexic, exercise-bulimic or metabolically-challenged; now I’m just angry, emotional and disgusted with these pervasive, life-threatening, and psychologically/physically-altering disorders that create such a profit for some and bring so many others only misery and sickness. “Preyed-upon” comes to mind when I hear the word, new diet.

 Although my migraines have taken over as my now life-altering issue, I feel it necessary to speak my mind; discover and expose the truth; and say it like it is. Although I can’t cover all that I’ve uncovered in this short post (more to come; please do your homework on this and keep an eye on my upcoming rants, I mean posts on this issue…), I want to highlight a few things I’ve learned. I still have more to learn, and I want to reiterate that I’m no professional – just a concerned activist, tired of all the hype, misinformation and money-making strategies used by anyone looking to make a living from this epidemic that is taking so many lives, literally and life-altering-ly. Here are a few facts to consider:

ü      A big portion of our dependence on food, weight-issues concerning food, and other health-related issues can be blamed on the chemicals in our food, health products, and everyday items, as well as in our environment. Please familiarize yourself with these “words”: MSG, Aspartame, Xenoestrogens, Phthalates, Parabens, GMO’s, PFOA’s and more. The list goes on… Remember “Pink Slime”?  There’s so much more. The effects on our weight, health, immune systems and cancer-risk are intricately woven into what we eat, slather/spray on and breathe; please arm yourself with knowledge.  

ü      As I stated earlier: obsession/preoccupation and constant discussion of weight, fat, weight loss and dieting creates an internal struggle that cannot easily be eliminated. Our minds and bodies are one in the same, and psychological issues such as shame/guilt, obsession/dependence, and metabolic issues are the price to pay for dieting. The metabolic is more easily remedied than the psychologic which sometimes can never be completely resolved. Read more on the 1940’s Minnesota Starvation Experiment and you’ll see why…

ü      80% of women in a People Magazine survey said that t.v. images made them feel insecure. So much for “positive image”, huh?

ü      3 of 4 women felt that they were overweight; only 1 in 4 really were…

ü      52% of girls began dieting before age 14; ½ of 4^th grade girls are on a diet and 81% of 10 year-old girls are afraid of being fat. What are we allowing the dieting industry and society as a whole to do to our daughters?

ü      Eating disorders have the highest mortality rates of all mental illnesses. This mortality rate is approximately 18% in 20-year studies, and 20% in 30-year follow-up studies. Overweight is an eating disorder.

We can change this. Trends as well as food additives can be eliminated from our vocabularies, foods, and products as well as from our bodies and minds. As consumers, we can access knowledge and facts about all that surrounds us. Then we can use this information to challenge the responsible, the influential, even the movie-stars and t.v. docs. This is a responsibility we can handle; they need us: without our help, they are doomed. 

“I am a writer”

Because…

I have a need to contemplate, explore and inform.

Words inspire me; metaphor intrigues me; and “create” reanimates me… endlessly.

Writing is the path my soul has chosen; the mark I’ll leave will be cast in words…

“It was a dark and stormy night…”

Wait, that’s fiction – sorry, wrong contest…  Here is my submission to the “Jeff Goins, ‘I am a writer contest’”:

A few Haikus: (drumroll, please…)

Observe, feel, inform;

Voice creates, then cultivates.

I AM A WRITER.

 **********************************************************

My journey, my voice -

Courageous, inspiring,

Must create to live.

 ***********************************************************

Your Voice can be found…

It just needs uncovering;

YOU ARE A WRITER.

************************************************************** 

My soul, its journey –

Inspired, driven and stoked

By thoughts, vision, words.

 **************************************************************

Passion and Practice,

The fire will uncover

The voice to be heard.

***********************************************************

-Buddha    “What we think we become”

-Ralph Waldo Emerson    “Once you make a decision, the universe conspires to make it happen.”

…I AM A Writer.

                Tuesday May 8^th, 2012

“You think you know – but you have no idea…”

               WEGO ‘True Life Tuesday’ Blog Party Post

You think you know, but you have no idea… what life is like for those of us with migraine disease.

I often find myself ruminating more, angering more, and filling up with more tough questions about my disease – this dagger in my side – when I’m sicker. Sometimes these feelings are triggered by emotional upheaval (bad as well as good), celebrations, and life changes too.

All of these things happened last week.

My daughter graduated with her ASN just this past Saturday. As you can probably imagine, Saturday was big, celebratory, and wonderful; I was able to enjoy pride, gratitude, joy and relief that the hard work was over for her. My gratitude extended to include the gift of my being able to attend the ceremony, something no respectable migraineur would ever take for granted. It was an amazing day.

But other, not-so-fine emotions were able to rise to the surface of my consciousness, adding heavy feelings and weighing down my thoughts with burdens I thought I’d mostly dropped.

The quest for my own career came quickly back into focus as I watched my daughter and the other graduates smiling, walking, and then accepting that little piece of paper that would ensure their dream careers. I snapped photos of them turning their tassels and waving to their families; I clapped after the speakers’ inspiring words; and I soaked in every meaningful moment of the day.

 I realized that this could’ve been me, too; I could have shared the joy of a career earned in a field shared with my daughter (I was working toward my Paramedic Science degree).  Then I pictured myself as I am now: middle-aged; more-or-less broke; yearning for meaning; and plain and simply – sick: sick of being sick, and sick of feeling like just another loser losing in the game of living. My happiness remained, but was now joined by my ever-present and amazingly-resilient “negative side”.

As I writhed around in a little delicious self-pity, I became aware again of the rage I feel because of my disease. I feel rage because of the pain, isolation, and loss of life that the migraines have cost me. My resentment increases to include the guilt and disgust that being in pain invariably brings to those not completely in control of their own lives.

But these emotional and physical burdens can’t begin to describe the additional burden present in all migraineur’s shoes. No, this particular burden isn’t physically painful, but has been proven to escalate the level of pain and its sensation; it is misunderstanding and it raises the bar so much more than the physical pain; and it is the stigma that almost all “invisible” illnesses carry every day.

This stigma infiltrates every pore of a migraineur’s body, mind, self-esteem – core. It is probably the number one reason that those of us inflicted with this life-altering disease lose friends, family, careers, and dreams. It is hard to be discounted, disbelieved and labeled a wimp, faker or “someone who’s just trying to get out of work/being responsible/participating. I want to ask the disbelievers why ANYONE would want to be denied the chance to work or participate in life. I see myself in dreams opening up my head, showing them the glistening pain, and screaming at them that, “Look, this is REAL – how in the world can you not see it NOWWWWWW!!!!!!!!” In my more primitive moments, I delight in their brutal moments alone with this “thing”, this monster who wears my face and inhabits my every breathing moment. I pass “it” on to them; insert it into their heads; and feel only stinging vindication.

I am livid with it…

After my daughter’s graduation, we drove to her party, another celebration mired in hope and gratitude of my being able to attend. My monster, however, had a slightly different view of “party” and had slithered into my brain during its three-hour stint in the auditorium’s fluorescent lights. I vowed to ignore it – and actually pulled it off for awhile – not realizing that my earlier, more negative feelings came with the monster.

Being with family was wonderful. I basked in the simple fun, celebration, and good food that marked this happy day. I felt refreshed to get the chance to do something that allowed me to forget just how different I really am.

But once I knew for sure that the migraine monster had come to visit and wasn’t leaving, I again felt guilty, depressed, inflicted and very different.

I smiled as I strolled to my car to get my trusty triptan. I willed my grateful, positive side to “come forth” and show itself. It didn’t disappoint. No one really knew how bad I was beginning to feel, and although the activist in me wanted to tell them all about just how crappy this horrible disease REALLY IS, experience kept my mouth shut. I wanted to explain then and all the times before then, how scared I get; how worried I am that my triptans will run out; and how hard it is to remain positive and courageous while stuck in the mire and muck of a disease very few understand or care to understand. I want them to know just how bad the pain really is – that I’m not a wimp, not a “Barbie”, and definitely not using “those headaches” to get out of doing things!

I WANT to do things; I WANT to participate; I WANT to live and be accepted and believed. I WANT funding for this disease and I WANT compassion while I suffer and plan my whole life around the pain and trying to tiptoe around it. Please, someone – HELP ME; don’t leave me to suffer like this, then talk behind my back about what a fake and failure I am; please don’t roll your eyes when I talk about not being able to work or go back to school; please allow me some dignity and believe me when I say that THIS KIND OF PAIN IS DEBILITATING! Give me and all others suffering with invisible illness a chance; don’t judge if you can’t be sure. Love us anyway. Remember…

“You think you know – BUT YOU HAVE NO IDEA…”

WEGO HAWMC

Tuesday May 1^st, 2012 Recap

“Are you kidding - I will usually think up anything to avoid writing!”

Well, here we are; what do we do know? For me, I know what I’m going to do now: continue to write! This writing challenge has been pure fun, inspiring, insightful, and… challenging!

Being in this competition and keeping up with it has brought me ultimate gratification. WEGO left me zero excuses (well, two really, but I refused to let myself use them although it was comforting just knowing they were there…). This meant that I had to ditch my I-can’t-write-today excuses and actually do the thing I wanted, but just never committed to. Once I got the idea in my head, motivating myself wasn’t as hard as I thought.

And the rewards have been so much more than “having” to write. I found people that were different, but just like me; I got valuable writing time in; and I pushed myself in ways that needed to happen. “Grateful” comes to mind every time.

Here are my takes on the final questions my crumpled HAWMC prompt sheet has to ask me:

Ø     Which was your favorite prompt?

I like them all (except maybe for the Madlib!!), but my favorite has to be my poetry. I am very fond of my ekphrasis, “Tiny Gratitude”. I almost always prefer my poems and metaphorical stuff.

Ø     Which was the most difficult?

In the beginning, quite a few were difficult. I tend to be a lazy person (in all respects!!), and resigning myself to sit down and write everyday seemed lofty. After a few days, I settled into a pattern, and felt out-of-sorts when I wasn’t able to write first thing in the morning. The hardest for me is almost always techie-stuff. I don’t care much for cajoling my moth eaten computer to “Please, please just work today – please…” and a few of the prompts were additionally challenging because of my un-savvy, unsavory, and unsatisfactory “way with software & techno-gadgets”. I have a lot to learn in that department.  This is where this “challenge” has been the little kick-in-pants I needed!

Ø      Which ideas will you reuse?

All of them! I keep a notebook, writing down anything & everything that passes by my consciousness. More times than I can count, these little reminiscences have given me just the spark that I needed; my finished posts, I believe, will probably serve the same function at some point and time. It’s all valuable – eventually…

Ø     Who was your favorite fellow blogger?

I didn’t get a chance to read everyone, but literally everything I read was inspiring. I discovered and recognized feelings and struggle in others that I believed only resided in me; the camaraderie in just that was as therapeutic as it gets. I have to mention Amanda H. for pulling me out of the trenches (so to speak!! Ha ha) last night, and Sara Ringer was both a person I could identify with as well as a huge inspiration. Many of my toughest moments and feelings were mirrored in Sara as well as many of the other activists. Discovering all these similarities has comforted me in a way that I never knew could happen.

I hope these discoveries were duplicated for the other writers/activists.

I want to thank WEGO and all the activists who were so awesome to me. I don’t think I could have kept going without all the help, advice and kindness that were demonstrated. I won’t forget this competition or all that I have learned in these last 30 days – Thank you, WEGO!

***** Please Note: ****** My success with this post is dedicated to Amanda H. If it wasn’t for her, I wouldn’t have been able to post my word cloud (I was able to complete the cloud, but my computer would not open the link).

Thank you so much Amanda!!

Day 30, “Word Cloud”

*******NOTE: Technical - Techie - Difficulties*********

Sorry - my words are listed below the ‘link’, but my computer and Wordle just couldn’t get together for an agreement. My cloud was beautiful; I wish you could have seen it (I was told it was somewhere on the internet…).  I upgraded my Java, printed the word cloud and tried to post it (didn’t work, either) and attempted some of the FAQ solutions. Oh, well… If I have a moment of “Nerd Inspiration”, I will update this post. Thanks for checking it out!  See Link Below (maybe someone can open it?? Hope so!):

<a href=”http://www.wordle.net/show/wrdl/5214706/In_Spite_of_Migraine”
          title=”Wordle: In Spite of Migraine”><img
          src=”http://www.wordle.net/thumb/wrdl/5214706/In_Spite_of_Migraine”
          alt=”Wordle: In Spite of Migraine”
          style=”padding:4px;border:1px solid #ddd”></a>

Fractured chronic illness trigger triptan cascade serotonin zomig relpax nausea debilitating suffering desperation genetic migraineur trigeminal hopeless searing throbbing piercing relentless stigma misunderstanding topamax neurologist doctor headache specialist loss

Inspired hopeful irony strength courage determination relief acceptance fighter defiant soul spirit presence fearlessness persistence serenity peace insistent positive

Poignant prose writer author voice quill pen keyboard hack inquiring commentary compilation lyric muse words paradigm metaphor rhetorical journalist seeker commentator poet description

Day 29: “Six Sentence Story”   (** I prefer my first  sentence/paragraph because of the vivid memory it still invokes and because of the info with metaphor I used **):

I got my first “bad” headache at age 11, but the second one – developing and ripening on the airplane while on my way to visit my uncle and his new family – left me puking and reeling in the grass of his Indiana home.

 My succeeding years shared the pain of the earlier ones, but I learned the art of “avoiding triggers” to keep my “headaches” at bay; now my pain, although unbearable, happened only four or five times a year.

My changing hormones signaled the new addition of more headaches occurring during my menses now at age 28; I found out that these hormones were the start, and now the addition of even more headaches that I now realized really were “migraines”, then and now.

A few years later, more migraine headaches plus new symptoms began to escalate and stealthily invaded my fairly normal existence; my life as I knew it - although still mostly intact – was about to change for the worse.

It’s now 2005, and those early, “bad” headaches have embedded themselves into every facet of my experience: I cannot hold a job or career; I cannot find reliable relief or a knowledgeable physician; I cannot be sure of my health and how I’ll feel each day; and most of all, I cannot make complete peace with a disease so shrouded in misconception, stigma and lack of funding.

Although, on the “good” days I still feel sometimes like I’m “playing hooky”; planning around everything; and rushing like a chicken to get things done, my life now – even in the face of a neurological disease that takes more than it will ever give - in 2012 has become one of acceptance, courage, strength and flexibility.

Day 28: The First Time I…

The first time I realized how good people can be happened in 1997.

I had recently started a new job and a new life. My divorce was final in August of that year; I had two young daughters and myself to support. This “new” situation didn’t feel much like life to me at that point in time.

My new job would offer support, insurance and hope for my little family. I worked as a fuel systems operator in an engine factory one town away. My work days began at 5 A.M.and ended about 8 or 10 hours later; the worrying usually started once I got home.

I worried about whether or not my daughters and I would have enough money; I worried about them visiting their dads; I worried about them getting to and from school ok (I had to be at work before they had to leave for school and daycare; and I worried about what would happen to me.  When my new job started, there were two months left until Christmas…

The Holidays weren’t such a big deal for me; they never were. But I wondered how this particular season would feel with my new life and all. I missed my husband, missed my mom (she died 4 years earlier) and missed the life I thought I had and the life I thought I would have. Nothing seemed to be certain anymore.

I found out in November that the factory I worked in had almost 2 weeks off during Christmas and into the New Year. This was a blessing: I could spend time with my daughters, get some housework finished and try to relax and de-stress some. I found out a few days later that this was not a paid holiday for “temps”. I was a temp. Another worry…

My dad said that he would try to help during the unpaid holiday time. He could get meals and help for us at his church, and he offered to buy presents for the girls – there wouldn’t be much, but he was willing to get “a few things” for them. I thanked my dad and wondered what my daughter’s fathers would do for them.  My most important goal was getting to work on time and keeping it together.

The coldest weather of the season hit that year before Christmas and I was grateful to have a warm home and a warm job. I thought about some of the other people who were in my circumstances. Sometimes these thoughts offered me a little relief.  I was still wondering what would happen when Christmas did come; maybe gifts were the least to be worried about. What would it be like with “just us”; how would my daughters feel?

Our last day at the factory was more fun than work; it seemed that we had one “Christmas dinner” after another. Some of my co-worker’s drove me around the factory to every mini-feast they knew of; they pulled out plastic containers and foil they had accumulated and told me to fill up. Each department seemed to know I was coming; some of them had containers of food they had cooked already filled for me. The day was actually festive and I forgot about my circumstances for a little while. I felt surrounded by family.

All the departments in the factory got longer lunch-times. After our department’s feast, we sat around languishing in our “extra-long lunch”.  A little while later, a few of the “old-timers” in our area – people I knew to be working on their 30th anniversary’s with the company – all walked out of the Christmas lunch area we’d set up. I asked one of the other temps what was going on. He said that maybe we “ran them off”. I said, “Yeah, sure, thanks, dummy!” We relaxed while we waited – and wondered – what may be going on.

Two of my “favorites” came back – Pat and John. They and the other “oldies”  were each carrying three or four Christmas presents, and even our manager and team leaders seemed to be in on this “surprise”!  These “presents” were all for us temporaries; we each got at least two gifts, and I even had two presents for each of my daughters now! The gifts even had name tags and we all got Christmas cards, too. I couldn’t help being completely blown away. It turned out that my friend Pat had picked out most of the presents. One of the temps told Pat that I had two small daughters. Another temporary also told Pat that I was recently divorced and just getting by. Really, we all were, “just getting by”.

I thanked (and bear-hugged) all of them; I was so grateful and felt so loved that none of my circumstances seemed to matter at that time. The oldies group looked so pleased – and proud – and told me they wouldn’t have had it any other way. I heard later that this department wasn’t the only area of the factory doing things like this. My experience was happening all over the plant that day: from the food-gathering drives to all the “feasts” and this present-giving – it was all planned for us.

About an hour before we left that day, and as we said our “goodbyes ‘til next year”, Pat handed me an envelope. I looked up to see the rest of my department watching from behind their machines. Inside the envelope was $367.00 – enough for the unpaid 2 weeks!  I could only stand there. It seems that this was their “last surprise” for us; all three temps got “their pay”, enough to cover the time off for the holidays. I don’t think any of us knew what to do or say. Many of the “oldies” had small tears forming in their eyes.

For me, although still sad and uncertain, this was the warmest of any Christmas I’d ever had. People that weren’t even related to me had cared for me more than many I’d recently considered family.  I learned that anyone can be “family”, and that love and care can come in any form.

                              My 5 Challenges of Migraine Disease

• Accepting my “fate”:  One of the hardest parts of having a chronic illness is accepting that life will be different.

I had plans for myself; we all do. I never realized that migraines - a condition that, “got in my way” once in a while when I was younger – would take over in such a big way in my middle age. Its funny how abruptly my plans/goals change when I have those chronic days that sometimes turn into weeks; when the pain is so distinct and enveloping that I can only wish for just a few hours of “normalcy”. In these moments, all I can do is beg and pray for any relief. College and a career seem millions of miles away, and not nearly so important.

• Staying Courageous: Maintaining a brave spirit in the face of pain that often becomes unbearable is hard work at best.

If migraine disease only meant excruciating pain, that would be enough; but it does not: migraine disease is so much more than just pain. Along with the myriad of associative symptoms: dizziness, nausea, vision issues, exhaustion, difficulty thinking, gastro distress, and more, migraine equals a life in which this suffering will never go away. Treatments abound, but they are NOT cures; suffering becomes part of a migraineur’s mere existence. Holding on to courage becomes essential, but its one of my most difficult and elusive mental acts of balance.

• Disregarding “Non-believers”:  Stigma surrounding migraine disease is alive and well; owning my own power regardless of what others’ think, say, or don’t-say becomes all –important.

I have an especially hard time when something is said; a job is lost; my reputation is lost; or when anyone in general gives me that “look”. To suffer in a world where many people (and many professionals and doctors, too) equate migraine with, “just a bad headache” or “hysterical woman/hypochondriac syndrome”, horrifies me. It also brings to life in me an inconsolable fear; defiant anger; and a loss of my own power that takes tremendous amounts of energy to regain. 

• Avoiding Worry & Fear:  Misunderstanding that cannot be rectified; unbearable pain that will not abate; and worry surrounding the pain and how it will be treated creates a situation of almost unbearable worry and fear.

Attempting to avoid worry is another necessary task for me that is always “easier said than done”. I worry that my headaches may become so frequent or so extreme that no one will be able to help me; I worry that my life will be wasted, and everything I’ve ever dreamed of will disappear; and  I worry that I will run out of triptans: my insurance allows only six of any triptan in a month. I average eight to twenty migraines every month, and my only relief is medicines that cost approximately $30.00 per pill. This fear that lives in my subconscious is real, and can only be quieted with my management and balance of courage. If the courage dissipates, the fear fills all the empty spaces. 

• Disregarding Depression: Depression and hopelessness seem to have been invented by migraine disease. Holding on to happiness while in the grips of an unrelenting illness that no one seems to understand or care about becomes all-encompassing.

Many days, it is incredibly hard for me to remain positive and light. My “little victories” (thank you, WEGO) keep away the unmentionables under the bed (thank you, Stephen King – sorry, had to put this one in…), but depression is always ready to take me away. I’m sure that all chronic conditions share depression as a co-pilot, and migraine is no different. Maintaining sanity, and a reason to be here is another full-time job, and I work there every day.

For me, all the challenges that I face boil down to one truth: holding on to those “little victories”: the daily/weekly/expected pleasures that allow hope to live. This hope supports all the necessaries – Courage, Acceptance, Security, Happiness, and Self-Esteem. Without that hope, all else becomes loose sand gripped in a tiny fist.

               My 5 Small Victories (“Migraine Defense Plan”)

• Enjoying my daily/weekly/routine “get-togethers” with my husband & daughters and my sweet pet-friends. I love knowing that I can look forward to my daily routines with my family. These “little things”, keep love, purpose and hope alive…
• A victory exists that I never knew “existed”; this is the help, camaraderie and support of others who are chronically ill. Until recently, I never really reached out to ask for support; I didn’t want to be one of the “sick” ones, but I am and I must. I’m at the beginning of this story, but I’ve found in these people another piece to my puzzle in accumulating and keeping all those necessities that a chronically ill person cannot live without. This is true hope, even in the face of paralyzing fear.
• My own health. I am grateful everyday that I have the good health I do. Although migraine attempts to gain control of me on an every-day basis, I am secure in the knowledge that my “other” parts are well and usable. I know enough to realize that any health can be fleeting. This allows me to be all the more grateful for the health and abilities I do have.
• My hobbies and my ability to enjoy them. (This “victory” is probably a subcategory of the former one above.) Migraine disease constantly reminds me of what I can’t do; hiking, writing/reading, learning/exploring, the arts/music and the fact that I can still enjoy them reminds me of all that I CAN DO. Being able to do these things invites strength; strength allows courage, and courage makes everything else possible. This is a Grand Victory.
• Finally, loving all those things that I love is a victory above all other victories. I am grateful that I’ve found these loves and desires. Many of them existed long before I got this sick; the fact that they remain is miraculous and keeps my hope well fed. Being able to enjoy these seemingly small tidbits of life reminds me that beauty exists. The ability to live this life is synchronicity in the midst of disorder; relief after the most horrendous pain; and life in death’s face. Just another small victory…

Day 26: Health Tagline

                                           “Courageous Keys”

                          ‘Deleting’ migraine disease one word at a time…

*********************************************************************

                                 “The Fractured Muse”

   Chronically

        Compiling

              Courageous,

                      Comforting

                           Commentary

                                                   For The CURE!

*********************************************************************

                                       “The Paradoxical Pen”

                    Persistently Perpetuating Poignant Peace…

                                            Through Prose 

The old woman’s accent was that of a gypsy and her stringy, grey hair was long and dull…

The day was busy, but really no different than any other. It was warmer, and the bright blue sky now held thin, streaky clouds. The atmosphere was smiling as Paula began her morning.

She dropped off her rebates, bought red “Love” stamps and paid the postal clerk. She whisked away from the counter, “This should be a pretty easy day. I’ll sell those books at Viewpoint and get to Greenwood in plenty of time to shop a little before the mammo – cool…”

Paula wasn’t really worried about the mammogram. After all, the doctor said that she wasn’t ‘too concerned’. “The lump appears to be in response to all the hormonal changes you’ve been having.” No surprise – the migraines have had their tale to tell, too; perimenopause doesn’t discriminate: lumpy breasts, crazy periods, and out-of-control migraines seem ‘par for the course’, Paula thought as she strolled through the exit doors.

The post office’s parking lot was surrounded by bronze-colored block walls, more than 20 feet high; the effect was that of a castle’s courtyard inside it’s walled fortress. As Paula exited the post office, bright sunshine greeted her from above the steep walls. Her car was parked across the ‘courtyard’ and on the other side of the parking lot’s entrance; she checked for traffic and headed in her car’s direction.

A blaring car horn stunted Paula’s short walk to her car. Her eyes instantly checked the entrance lane, then scanned the lot’s two rows of parked cars: no danger. The car’s horn continued to blare and stop, blare and stop. Paula realized that the piercing sound was coming from a car, still parked, but with its backup lights on. The car had not moved yet.

Paula’s gaze met the driver’s. The incoming thought was one of aggressive hostility; Paula was taken aback by the vehement words coming from the driver: “You better get out of my way, NOW!!!” Paula noted the driver’s matted grey hair slap the glass as she continued to shout through her window.

“The last time I checked, pedestrians had the right-away!” Paula wrestled with her innate and immediate response to this ridiculous situation versus “just letting it be and going on”.  After all, she didn’t have time for a silly confrontation.  

The grey-haired driver continued her comments as she rolled down her window.  The hostile driver’s words reminded Paula of a fortune teller’s voice; a quick chill brushed up her arms as she stood rooted to the warm blacktop of the parking lot.  Paula noticed two men, a younger business-type, and an older, kind-looking older man two spots up from the ‘fortune driver’. She felt relief when she glanced over to find their conversation stalled as they watched the irate woman driver scream and shake her fists.

Paula didn’t want to get out of the fortune driver’s way – defiance and anger still clouded her skies - but she did step forward towards the two gentlemen so that she could speak to them.  The ‘kind’ man was the first to speak, “Are you ok, do you know this woman?”

“No, I’ve never met her, can you be…” Paula’s words were cut short as the driver stopped within an inch or so from her lower thigh. Defiance was not replaced by, but was now sharing a narrow hall with fear, awe and another feeling of needing to move – NOW! Paula noticed beads of icy sweat on her arms and chest, and the patrons in the post office’s courtyard parking lot were now silent.

“You’re going to die!!” howled the gypsy-fortune-driver. Her hands, knurled and liver-spotted, were white on her car’s steering wheel.

Paula’s remaining defiance held its stand, “Is that a threat?”

No answer: the driver continued her death-grasp on the wheel, but her gaze had changed. Her eyes, steel-gray and intense through the windshield, kidnapped Paula’s view. The look, Paula realized, was now one of great contemplation, no less aggressive, but now…insistent.  The feeling of needing to move was now more intense than ever; defiance was slightly fading, replaced now with what felt like raw survival.

“Please, can you call 911?” Paula asked the ‘kind’ man. She did not have her cell in hand, and as she turned to look back into the gypsy’s windshield, she found the gaze, still there and ready to assume its position/move. The sweaty chill returned.

Paula took three steps to the left of the driver’s car; the earlier feeling of NOW… was now. The engine growled, spun, and the car wheeled around, missing Paula’s right leg by inches again. As she noted the car’s plate number, she could still hear the gypsy’s raw words as her car spun out of the parking lot.

Paula thanked the gentlemen and nodded to two other patrons as they inquired about the strange incident. Heavy grey clouds now lay like wet blankets over the shining blue sky; the blue that was left poked through like shards of a broken bottle as Paula cautiously made her way back to her car.

Red “Love” stamps lie on the hot, black asphalt behind her.

*** This actually happened – yesterday. I did embellish a little, though… (Ha Ha) ****

Health Mascot, Day #24

I admit it: I considered drafting a monster or other, “painful” creature to be my migraine mascot. After all, what better way to expose the level and type of pain that a migraineur goes through? Monsters, fire-breathing dragons, psychopaths, and medieval prison guards immediately come to mind.

The pain just feels that way. Migraines are:

Ø      Unbearable

Ø      Ugly

Ø      Untimely

Ø      Unrelenting

A monster is all these things. So it would only make sense to evoke all the descriptions, feelings and conditions of migraine disease with that of a monster. All the ugliness of so much pain would have to be described and represented with a beast…

But, my mind took a different path, one I want to share with you.

My kitty, Samuel won this one. He is not scary, doesn’t contribute to my pain, and has earned this title. You may ask, “Just how did a small, kitty-cat earn the prestigious award of “Health Mascot”?

Well, it didn’t happen overnight, and I wasn’t planning on enlisting him one bit. I wasn’t even aware that I should have a mascot for such a hideous side of my life.

I chose Samuel because he represents the “other” side of migraine – the side of relief & comfort:

Soft & cozy

Sweet & warm

Compassionate & non-judgmental

This is how it plays out. When I’m sick and in enough pain that lying down, suffering and shutting down the day must happen, I tend to turn to the things that can relieve pain or at least dull it. I also look for comfort when the pain won’t budge. I begin this process with these necessaries:

• Stopping anything I happen to be doing once the “badness” comes
• Triptans
• Hot bathtub
• Carbs (if I’m well enough to eat)
• Couch arm (I lean my head over the back of our sofa – it’s firm and nicely numbs the nerves in the back of my neck)
• Blanket (I’m usually very cold during a bad migraine, but my pounding head is usually not – it’s afire…)
• Being alone (talking is usually not recommended and listening – to anything – is horrendous)

This is the end of MY list; as you can see, there’s no Samuel on it…

I didn’t list him because I don’t have to. You see, once most of the other “relief’s” are in place, Samuel just, “shows up” – gently plopping himself on my chest – and stays with me until I can function again.. I can’t be sure if he realizes just how bad I feel, but I get the feeling he just, “knows”. My other cats and my dog seem to realize the very same thing: they all congregate around me, then they just patiently… wait.

Honestly, they all deserve the credit of “Migraine Mascot”. Instead of representing the “ugly” side of the thorn in my side, my pets stand for the good. They are there to remind me that I will get well, I will be ok, and this will pass.

Health Activist Choice Day 2!!  Woohooooo!!!!  (Monday, April, 23^rd, 2012)

I’d like to say that, “I sure love these ‘free to write whatever we want days’”, but that wouldn’t exactly be a true & honest statement (!!!). I actually do much better with a little direction, Thank you very much, and my mind usually produces a fairly reliable stream of data if given enough FIRM nudges (i.e. “prompts”).

When left to “my own devices” – well, ummm, uhhh, - I tend to do a pretty reliable bunch of…

…Nothing.

But - I can produce, and I can think when no script is lying on the floor, so to speak… as long as I get my inner drill sergeant back on the job. And she is now at her post.

So, without further ado, here is my “Choice Day #23” Post:

I’ve had a lot on my mind lately (brought to you by WEGO HAWMC) and in a few of my notes from “leftovers” reclaimed from an earlier post, I noticed a few that really got me thinking (no easy feat when left with no “real” prompt cue to follow – read on, you’ll see what I mean…).

This batch of thoughts seems to revolve around my seemingly unfathomable mix of contradictory personality traits. I call this collection, “Unmistakable, Mistakenly – Me”

• I’m often positive, boldly strong and secure; but I can be negative, overly sensitive and as gloomy as a wet blanket. I usually avoid talking to anyone when in the latter mood(s), and hole myself up somewhere (literally and figuratively) until the feeling passes or when I HAVE TO come out.  During the ‘positive’ days, I SEEK people, thoughts and adventures like a middle-aged “Crocodile Hunter”, but when the curmudgeon comes to town, hiding seems to be the best bet!
• I have a need to be “good” and accepted/fit in; but I have an almost parallel (and subconscious) need to be eclectic, slightly shocking, and un-average (Betty Crocker – “get out!!!”). Go figure…
• I prefer metaphor – in both writing style as well as in life – but I have a need (a fairly strong one, too…) to “say it like it is”. During conversations, my ’good’ side attempts to “cushion” the incoming blows of my true feelings or disagreement while I usually “beat around the bush…” This interesting personality trait usually tends to confuse and irritate most people I come in contact with…
• I prefer compassion and strive to be compassionate – I AM cut from “that mold”; but I tend to lose all feeling – as well as compassion – when pushed farther than my limit.
• I’m traditional and old-fashioned; but I’m also hugely liberal, tolerant and “out of the box”. I dislike judgment, stone-like points-of-view and closed-mindedness in all forms except in the cases of life-threatening bear-mauling or mugging.  (Feel better now that I’ve got that one off my chest… whewwwww!!)
• I really love food (who doesn’t???) (at least the stuff my BRAIN allows me to eat…); but I love to exercise, get all-out sweaty and go ‘till I’m worn out!  Then, I have the excuse to sit around, eat again and do nothing!!!!
•  I’m mostly a serene & patient person and I dislike any form of confrontation; but I can become extremely angered, volatile and confrontational when the need arises. Sorry – hard to admit, but the truth.
• I always prefer to be outside/in the country; hiking or just adventuring – watching ants or other bugs/critters; looking for “finds”, animal-shaped rocks, playing on the beach; but I can have a totally “city mood” hit me. I love to dance, go to concerts and party (Oh, but the BRAIN decided years’ ago that “partying” was pretty much, out-of-the-question. So - I don’t do a lot of it these days). Also, I LOVE a big crowd (big dream – going to the Grammy’s or huge, star-studded parties).
• I have been shy my entire life. As I child, I hid behind my mom, talked to almost no one (until I got to know them – then stalked them and refused to leave them alone!!), and NEVER fit in any school (or “place”, for that matter… more details in another story…). I really AM, still shy, but I’ve perfected the “art” of disguising it. But, I am also hugely theatrical, love anything “out there” and artsy, and I can be the most animating – as well as ridiculous – person in any gathering! This, I’m sure, is my shockingly (subconscious) side making its Grand Appearance from time to time. This, un-shy side is also the my “part” that LOVES writing and all art forms – from exquisite paintings, children’s drawings and graffiti to uninhibited writing, poetry and quotes – love it!
• Lastly,  (this one doesn’t contain any contradictions, just one final statement) I am very sensitive and highly intuitive. This appears to cause a lot of discomfort to the “shy side” (discussed above): It’s hard for me to cry in front of others; talk about or deal with certain things; acknowledge hurt or pain; or kill bugs - I take spiders and most bugs outside (except for ticks & yellow jackets – scary!). I believe, in most cases, when the emotional “things” happen, the silly, ridiculous; “shocky-side” comes out again. Apparently, this part of me takes over quite often. This sillyness, in turn, makes me appear (most of the time, I’m afraid…) to be fickle, slightly misguided and flip. Did I mention air-headed? Yeah, probably that, too. I have tried to work on this over the years, but I haven’t been able to squeeze too much from it. I believe this is more than likely the reason for my being misunderstood so often (especially if you meet me in person - I’m more “myself” on paper…).

This leads me to my closing statement. Pondering on all these “disclosures” (I may really regret this later!!!), makes me realize something: None of us really knows the other. As I read my own words, I think about how many of us feel this way too..

Do we really know what someone else goes through; what they REALLY worry about or truly feel; how much pain they may be in or have felt in the past or just recently (maybe that day, in fact?)? Do we believe we have the answers on how smart or “stupid” someone is? If you think you do have the “market” on this, how do you know? Do you really know? Are you sure?

• Now, more that ever and especially in the case of chronic illness, be kind to those around you whenever possible.
• Allow them the same – and maybe even more – compassion than you would otherwise have for them.
• Realize that you probably don’t know everything there is to know about a person. So many intricacies about us CANNOT be seen.
• Attempt to live a less judgmental life. Remember, the life you forgive/understand might just be your own.  

On a journalist’s desk:

                    OBSERVE…

                    INQUIRE (?)

                    FEEL (Mmmm…)

                    CREATE.

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On the mirror of a chronically ill person:

Body: restricted                    Spirit: Unbounded

          fragile                                     Vital

         broken                                     Inspired

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 Dreaming is the first step to being…

-Can be found in anyone’s heart.

Today’s Post: A Madlib Poem. Boy, I’m glad they don’t all come out this…different?!? I apologize in advance for this “creation”…

I shines my railings and all the sand marries sun ;
I meditating my oceans and all is writing again.
(I research I inspect you up inside my bicycles.)

The thunder storms go reading out in soft and bleak,
And harmonious humidity accepts in:
I singing my clouds and all the sidewalk determines beach.

I laughing ed that you runsed me into pen
And sleep me determined, shiesed me quite fierce.
(I research I inspect you up inside my bicycles.)

rock cries from the forest, rain’s surfs assumes:
judges right whale and keyboard’s book:
I singing my clouds and all the sidewalk determines beach.

I allowsed you’d discusses the way you moving,
But I changing humble and I comforts your leather.
(I research I inspect you up inside my bicycles.)

I should have partyinged a federal house instead;
At least when bench tuckings they lure back again.
I singing my clouds and all the sidewalk determiness beach.

(I research I inspect you up inside my bicycles.)

- Paula J. Albers & Sylvia Plath

Migraine, a chronic neurological disease affecting as many as 37 million in the United States alone impacts 18% of women and 7% of men, according to the World Heath Organization. This disease negatively impacts the sufferers’ quality of life, and adding to the disabling nature of the pain, associated symptoms, and loss of functioning and livelihood, stigma and outdated information surround this highly misunderstood disorder.

Migraineurs – those suffering from Migraine Disease and its affects – report the loss of employment, family, friends and reputation due to the disabilities caused by their disease.  Although science has made some respectable progress, migraine is still a disease steeped in misinformation; blame (many times the pain is blamed on the sufferer’s “hysteria” or nervous habits); and lack of “visible” symptoms. Additionally, migraine is considered an ‘invisible disease’:  The sufferer appears well and without any visible issues during “non-headache” days. This fact adds to the stigma and misinformation - migraine patients are viewed as “attention seeking” or  “getting out of work” during a migraine attack.

 Understandably, funding and general support of this disease has been slow and many times, stagnant. A class of drugs called “Triptans” was developed more than ten years ago; these medications, designed to be taken at the beginning of a migraine attack,  have been the only treatment for migraine disease so far. (“preventive” medications,  prescribed for other diseases/conditions, are used “off-label”, and have shown limited success for migraine prevention.)

Migraine misinformation - which has been playing out as long as the disease itself - has now been righted. In a historical legislation just passed this morning the stigma, misunderstanding and judgment of migraine disease will be reversed and edited out of history itself.

Through a merging of science and information, all suffering related to stigma, incorrect information and misconception will be deleted out of all past thought, memory and record. Any incorrectly recorded data, misinterpreted thoughts and false accusation will be vaporized and rerecorded within 48 hours. Cases of irrationality and scattered thoughts may take up to one week, but will be settled within the allotted legislation’s time.

Scientists and others involved in this historical venture could not be reached for live interview, and would not as yet disclose the details of their stigma cure. They did post their commentary, related earlier today:

“Encouraged by our vision of a world more accepting of pain and illnesses not visible to the naked eye, we scientists, educators and journalists came together to wipe away the misunderstanding and misinformation so prevalent in the migraine community. Additionally, we envision using this new technology again to further erase all misconception and stigma associated with other conditions and diseases. We feel that these additional enhancements will take effect within the next three years. Although we realize that migraine disease at this time is incurable and debilitating, and represents it’s own very difficult struggles, we feel confident that this new discovery and legislation will further the cause of migraine funding that will eventually lead to the cure that so many sufferers are waiting for. Our stigma cure is truly a historical and relevant discovery that will ease the suffering of a suffering world.”

My days revolve around the avoidance of pain: when I’m in pain, I treat it; when I’m not in pain, I plan everything in order to avoid it.

I don’t remember what it’s like to be…

Only tired,

Only sick,

Only stressed.

The brain trumps all of it…

I would like to:

Drink beer,

Eat cheese/avocado/ice cream/raw onion/beef/bananas/yeasty bread/tomatoes/anything,

Stay up too late,

Sleep in too long,

Fly in an airplane,

Party too long,

Cry,

Drive on the interstate,

Hang out on a sunny day without sunglasses,

Not worry about hormones, stress, what others think, fluorescent lighting…

Although I would love my dinner guests to be:

1)      Thomas Jefferson,

2)      Jon Bon Jovi,

3)      Beethoven,

4)      Stephen King,

5)      Sarah McLaughlin and so many others…

I know that it would better serve me – in my condition – to invite:

1)      Someone like me,

2)       Someone like me,

3)      Someone like me,

4)      Someone like me,

5)      A doctor/neurologist/headache specialist who really understands what Migraine Disease IS and IS NOT.

Dinner with this group would probably include discussions about:

Drinking beer,

Eating cheese/avocado/ice cream/raw onion/beef/bananas/yeasty bread/tomatoes/EVERYTHING,

Staying up too late,

Sleeping in too long,

Flying in airplanes,

Partying too long,

Crying,

Driving on the interstate,

Hanging out on sunny days without sunglasses,

Not ever worrying about hormones, stress, what others think, fluorescent lighting…

Book:  Pema Chodron:  “The Places That Scare You”

Chapter 13: “Meeting the Enemy”

“With unfailing kindness, your life always presents what you need to learn. Whether you stay at home, or work in an office or whatever, the next teacher is going to pop right up.”

- Charlotte Joko Beck

I opened my book last night and the “random” page I discovered literally amazed me. I thought about it for a minute, and realized that it shouldn’t have. Quite a few years ago I learned – the hard way – that life is all about synchronicity and uncovering the hints and assistance that lie all around us . I also learned that there really is a higher power that is looking out for us: all we have to do is stay calm; try to avoid forcing a result; do only what’s in our own power; and allow the answers to come to us.

This was one of those hard lessons that I had to learn. I struggled with this truth and fought it every step of the way for years, until I started to see those “little coincidences”. These moments of synchronicity – seeing someone that I had just been thinking about; hearing someone say something that I needed to hear; opening a book at random to a page I should be reading – are always there, ready to help. We just have to be open and ready to see them when they appear to us.

This is what this post has brought to me today, and it happened in the midst of a tough month – a month filled with too many severe headaches; and too many moments of fear, doubt and challenging family situations. Opening this page last night has reminded me of the grand plan for me as well as for everyone else. I just have to remain quiet: the answers – and the compassion – will come. Here are my phrases from that book (sorry – two of them from the first two paragraphs, plus the poem above really stood out for me):

The essence of bravery is being without self-deception…

…It is easy to mask fear, pain and self-criticism. Bravery lies in the ability to get the self into the light, push past the doubt and pain, and present it to the world as-is. This is the only way to love and be kind to the self – self-acceptance.

A warrior begins to take responsibility for the direction of her life…

…and she knows that in order to be happy/successful/loved/necessary, she will have to use her strength and absolute power to move those mountains. But she will also use her calm serenity to invoke the truth, and she will then wait for the earth to respond. The massive rock before her cannot move through sheer force alone, and she knows it.

I still forget sometimes that the universe really does work this way: there is help, there is love, and it’s just outside those doors. The doors do open, but many times, we don’t even know they exist.

Until we begin to see them…

Lesson(s) I learned the hard way…

I hesitate to over state on this one, but mostly all necessary lessons learned by ME were hard; many times, extremely so.  My “gifts” of perseverance, strength and persistent/resilient optimism have a less glamorous side, and that darker half is: stubbornness (i.e. “bullheadedness” , for clarity’s sake). 

So, my darker side would like to present to you it’s take on the tougher side of learning the necessaries of life:

• My hard-won lesson of “what do I want to be when I grow up” is done and gone … for now. My migraines have become chronic in the last 8 to 10 years; this has left me with the stark realization that I should have attended/finished college during my, “healthier years” and gotten my career ‘in the bag’, so to speak. I attempted to go back three years ago; found I loved it; then discovered that my body/brain didn’t agree.

• Holding on tighter/Never giving up is not necessarily the best advice. Again, my stubbornness/perseverance used to be the first to show up at any and EVERY party. I believed that the best way to get and keep anything (people, ideas, “things”, sanity) was through mere and absolute force. As you can imagine, things didn’t always go the easiest for me during this period of my life…

These two lessons aren’t and won’t be the last of “things learned hard and possibly, wrong” for me. Although I’ve discovered – the hard way – that this is my learning style; my path; my cross to bear – I have no illusions that the hard lessons are over.

Hope, possibility, and brutal strength are lessons learned in the classroom of chronic illness. I am that student. 

DAY 16

It was incredibly difficult to narrow the “pins” I found down to three. In fact, I “pinned” (more like, scarfed, stole, and “grabbed hungrily”!) quite a few. Sorry, I lost count, but they are all exactly what I wanted and needed.

I am emotional today. This has been a “bad” month. I’ve had 10 migraines so far, and two of them (one on Easter Sunday, the other last night) have become severe and unresponsive to anything I’ve attempted to break them with. I still have pain now, but as it’s beginning to lighten, the emotions start coming in (I don’t really feel any “thinking” emotions during the pain-part, except extreme distress, anger, and fear.), and the artsy, feel-good part of my brain wants only comfort: comfort food, soft clothes, warm water, soothing images.  The “soothing images” tried to win out, but I persevered with the informational parts that I also wanted to include…

Here are the three images of both “types”:

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And this… it is an image of my migraine hope. That someday not even one of us will have to suffer again:

The pain and attending symptoms will be gone -

The stigma and misunderstanding, ERASED -

The planning around the pain; thinking about the pain; hiding the pain; and missing out on the whole of life because of the pain..

Will be no more

It’s odd, but I have to admit that I have considered my writing style (yes, before this post). This self-identification wasn’t born from vanity, writing prompt, or from my crony old English teacher; my discovery was both accidental and a little depressing at the time.

My first “real” reading adventure – not some droll assignment during Jr. High – involved a quick stroll through a dusty south Florida flea market; author Stephen King; and a bunch of bloodthirsty, domestic vampires; I was hooked…

And I wanted to write just like that!

My foray into attempting to write fiction led me to my grand discovery – I really wasn’t very good at writing fiction. I didn’t give it a huge go and I’ll be the first to admit it. I also know that practice really does make perfect, but fiction and stories just don’t seem to ”flow” well from me (or my muse?). I can make it happen when I need to, but that’s exactly what it looks like – something made up. Not good.

I did eventually find out that some of my best ideas came when I either, “said it like I meant it”, or sort of, “didn’t say it like I meant it”. Confused? I was, too. Explanation: it seems like I do better just stating the facts, or by using a lot of metaphor, poetry or impressionistic ideas. Writing in these two styles keeps me from endlessly babbling – something I can easily do too much of. You can’t really babble endlessly for too long using metaphor or poetry; and as far as listing facts - well, enough said. 

So, in my usual style (Listing: have you noticed the pattern yet – I LOVE to list things; a throwback and old habit from childhood. More on that in another post, I promise…), here is my best description of my Writing Style (drum roll, please…):

1)      First Question: “Do words just “flow” from your mind to your fingertips?” 

No, they do not; I wish they did. They do seem to flow – however – during my SLEEP. They also seem to flow while I’m DRIVING, during MEETINGS, SHOPPING, and whenever pen and paper ARE NOT HANDY. I purchased a voice recorder, but hearing my own voice freaked me out so bad, that I couldn’t retain my train of thought (or any other kind of thought for that matter…). (Note:  I try to remember to take my trusty pen and notebook to bed with me every night, because as sure as the wind will blow – or some other dumb cliché – I  will get TONS of ideas… and they will be after 1:00 A.M., but before 6:00 A.M.!!!)

2)      “Do you like handwriting first?”

Again, no; for some as yet undiscovered reason, I just don’t seem to prefer pen & paper. I think the idea looks so cool in theory (I’ve heard all the stories about the modern authors who’ve written all their “best stuff”, using old ball point pens scribbled on crumpled Holiday Inn napkins…): to sit in an abandoned diner in Paris, or under a 200 year old elm writing your best masterpiece and using only a quill and parchment – every writer’s dream (!?!?). For me, I do my best right at my computer. I don’t think the ease for me comes because the words go down faster; I think it’s just how my brain connects with that keyboard: “Oh, keyboard, must be time to really do something.” Anything other than jotting down notes, ideas, 2:00 A.M. inspirations, requires time at those keys, and I don’t mean, “piano”.

3)      “Do you plan your posts?”

Yes, sometimes I do; especially when the ideas arrive at three in the morning. I sometimes have to actually sit down and plan (these are the posts that I feel don’t do that well), but I usually get my best ideas while out walking;, in bed sleeping; and while generally busy doing something else during a pen & paper drought. (Note again: I usually have an idea what the next post or few posts are, so they are in my subconscious; I think that’s how the ideas come: the prompts are somewhere in the back of my mind – where the muse must “live” – and while I’m out walking or especially while trying to sleep, the ideas start… flowing/keeping me awake.)

4)      “Title first, or last?”

My ideas for titles almost always show up after I’ve written something. It seems like once the writing is finished, a theme or feel emerges from the paper; this is usually my title.

5)      “Where do you write best?”

Not to be redundant, but I do all writing better at my computer; my best ideas come from not-so-convenient times and places. Once the muse knows I’ve sat down to write, he appears to not-appear. While I’m doing something else, ideas are everywhere; I just have to sit down – with my ideas that I’ve hopefully written down somewhere – and get started. “HE” eventually shows up.

 The dogwood and cherry trees are full and blooming, but we can see our colonial saltbox from the side porch of the garden cottage; this small, ivy-covered cottage will be our home for the next few months while we finish the colonial. The lilacs lining the walkway around the cottage form a scented, bread crumb trail all the way to a small pond; the attending bees and butterflies dot the bright sky with quick splashes of color, accenting the greens with their kaleidoscopes.

The floors were finally finished yesterday. The reclaimed chestnut boards are 8” to 12” wide, deep brown planks randomly speckled with jagged nail holes and dark impressions left by long deceased worms. Our research told us that chestnut floors like these were original to this type of home in 1751. I stare at the whole of the floor and can’t take my eyes away from the softly gleaming but scarred, cinnamon-colored floor. I think about the people whose shoes have come in contact with this floor through the years and feel like I could make out incidents that have happened or words that have been spoken just by staring long enough. Those nail holes must have their own stories and each and every dent must have a tale to tell…

We’ve been refinishing with milk paint in shades of umber, cream and patriot blue today. (The wainscoting was finished last week: it’s finely carved wood and cabinetry will be restored to original condition, although we decided on the colors ourselves.) Painting with milk paint is pleasant and easy: the scent is like that of a tortilla chip, and there are no chemicals or side effects to think about. We mix the paint as we need it, and when we finish, the paint will be sanded and covered with a natural tung oil. As I start to mix my next batch, I think about how this type of paint was exactly the same used in this house and all the other houses of that time and I feel revitalized and grateful to have this connection. I ponder the house’s “other painters”, and I think about my history here now.

After our day of painting, we stop for dinner on the garden house’s side porch. We eat pan fried bass caught in the river past our woods; set it off with grilled asparagus; and  wash it all down with a smooth porter from Dave’s brewery located in our barn. Later, we take our time with a homemade bread pudding made in the cottage’s stone oven. Dave comments that our chef’s cooking is almost as good as mine; I tell him, “Be Careful!!”  When we finish, I wonder how many dinners were eaten in and around this old colonial saltbox. The house was formerly used as a pub and inn for years, and many Revolutionaries, Senators and Presidents dined and lodged right here; I bask in the thought of the ground I’m on at this very minute, and I have to remind myself to breathe…

Afterwards, we hike down the winding brick path to the old barn that houses Dave’s brewery and what will eventually also be his pub. Starting a brewery has been Dave’s dream for years, and it has been operational now while we’ve been working on the colonial. The barn is original to the house and property and was once used as a makeshift hospital during both the Revolutionary and Civil Wars. The barn’s heavy wood beams combined with the aromas of the gently fermenting beer waft around my head, filling my nose and senses with a warm heaviness that gives me a feeling of contented excitement. I am home, and I am a part of this homestead…

By the time we reach the end of the brick path that leads to the woods after our hike, it is nightfall. The sounds of the river underscore the crickets, loons and nightingales. Green lace shimmers over the white rocks near the river’s shore and the kind air holds me with its softness. As Dave gathers up the rope on our little boat’s rigging, I turn to look back towards the colonial and it’s attending trees, gardens and brick-lined paths; the full moon is shining and low on the horizon. Our new-old home, radiant below the glowing moon, reminds me of just how lucky we all are to have found each other.  The house seems to speak to me:

Welcome Home…

Living alongside me

There is a place -

Enveloped in dark vines,

Tangled, twisted and thick

It breathes

When I breathe;

It lives and occupies

My space

Those feet

Follow close behind;

Bleak, steel grey -

Not mine

The places I consider my favorites share their daily lives with a darkness I can’t really define. Those dark corners aren’t going anywhere; my brightness has learned to coexist with them, and acceptance has replaced complete despair.

Here is a list of my brightest and most necessary “can’t-live-withouts”:

1)      Family & my sweet, little pets (some not so “little”)

2)      “Rescues”: triptans, couch (with hard arms to lay my neck over – this helps numb the nerves in my neck , providing some relief), hot bathtub

3)      Sleep / Activity: Sleep is a must-have (I don’t do well unless I sleep at least 8 or 9 hours; the migraines will let me know…); activity, moving, getting out to hike & bike riding (more “must-haves” – I feel alive again when I can move, and happy-contentedness is sure to follow!)

4)      Music/Daydreaming/Escape: This is an “original”, and part of my earliest habits/memories – necessary.

5)      Books/Reading/Words – Should be considered a sub-category of the above.

6)      History/Exploring/Learning – Also a sub-category of #4

7)      Paranormal/Ghost hunting/Astrology/Why-we’re-here

8)      Hiking & exploring the outdoors, historical places – also necessary

9)      Movies – Great movies & interesting docs

10)  Rummage sales/Flea markets/Ebay – can’t let a great deal go by!!

These necessary’s and must-haves share space with the darker parts. I think everyone has a similar cohabitation going on somewhere behind the scenes, but I do believe it’s amplified in those of us suffering with a chronic illness. The needs & wants of ordinary life become more important, more vital in the face of continuing suffering; looking forward to these little decadencies becomes the hope of every new day:

My Bliss. 

********* Stream of Consciousness Day  ************

Ok, here goes - introducing the “me” version of my venture into blog challenges!! It’s hard for me to avoid a final edit, but it is here: raw me -scary!! Most of my mornings usually start with me attempting to get it together: either recovering from; planning around; or cautiously/gratefully wondering how I ended up so blessed so as not to have a headache (or some other migraine-related symptom). So, I guess this is my attempt to critique my writing below with a mild,opening disclaimer (of boring repetition - be careful)!! Read at your own risk…

This morning I looked in the mirror…

and thought about how old I look. I always do this, the same as I always get up, go to the bathroom to get dressed, then proceed to feed my animals (3 house kitties and a house-doggy). They are my friends – I don’t mind getting up in the morning to feed them – they are also my socialites!

After I decide that I do look old, my mind immediately goes to, “So what, all that matters is what you feel like; everybody gets old – these are like battle scars and you have a right to have them, and you can work around this”. I think my brain does this as an automatic acceptance – although I had to work on getting over the age thing for at first, eventually, it became automatic – my subconscious just takes over and the feelings of “it” being OK (old age looking as a trade off for just being happy & well) emerge on their own.

 After these thoughts, I start to think about how my head – and the rest of me – will feel today. This is also a daily ritual. I had in my mind what I wanted to do - which I immediately did after feeding my buddies. I then had toast (I start out with a “quickie” snack before breakfast  - I like to start with a fizzy pop and a cookie or snack before breakfast – I know, but you wanted to know this stuff – horrible grammer, huh?) and started to simultaneously think about what I would be writing, plus wondering if my headache was going to get to the level of being treated or not. I’ve had a lot of migraines lately but I have made it 3 or 4 days. I was the sickest I’ve been in a while on Easter Sunday – having a severe migraine all day and into the next night. I took three triptans, but no relief. If I wait too long, this is what happens. I had another one Monday, but I’ve actually made it since then without taking a triptan – a big deal when I’ve previously been “on a roll”. I can go almost a month straight, having a headache almost every day, but then the migraines will finally break (almost surely due to hormones), and I may go three weeks with no discernable migraine (I don’t count it as a headache day unless I have to take a triptan) and no need to take any other med – heaven!  I always think those days will last forever…   15 minutes – time’s up!!

My theme song could be none other than “Why”, by Annie Lennox. It didn’t take me long to decide this, but my music catalogue (stored in the safest place possible – my brain – ha ha, a migraineur proclaiming that her brain could ever be considered a safe place to put anything?!?!) is vast. Music has more than just special meaning to me: it has been and is my safe place and one of the main reasons that I’m here… and sane.

I don’t remember when I first realized this, anymore than realizing the moment that I first learned to swallow, sleep or cry. I also don’t remember actually learning to read, either; I just put the thoughts and pictures together with the words, and read them to myself. It was the same with music.

When I was about 4 years old, I had a few favorite songs. Many of these songs came with little books and were either on 45’s or 33’s (anybody remember these???). Two of these books with records were “Rudolph the Rednosed Reindeer” and “Peter and the Wolf”. I don’t remember my favorite songs from the Rudolph record, but boy, oh, boy, do I ever remember the song from side two of my Peter and the Wolf 45; this side held the magic, and that magic was “Greensleeves”, which I later found to be called “What Child is This?”.

I sat, most days, mesmerized by this song; I played it over and over, like some toddler OCD patient (no one even knew what that was back then…) and never tired of it. I know what I found in that song then as much as I still do now: comfort, understanding, solace/silence and my place to escape -whenever I wanted or had to..

I use music to escape now, some days more than others.

Of course, my music tastes have grown, but I still love Greensleeves and others’ like it. I have no specific genre preference: I have been known to escape into all musical forms and styles. I love classical (especially violin & cello); rock – hard rock, soft rock and pop rock; country (no “Western”, please); old and new. I seem to identify with meaningful lyrics and prose, but the instruments, melody and feel make up the difference. I speak of these “historical facts” because music has brought me here. My brain contains all this music wrapped up in the good and the hopeful, but the “bad” resides there as well. My pain - emotional, physical and spiritual remembers the suffering and those feelings are spelled in words.

Here are the lyrics to what I consider to be one of my most important “theme songs”:

“How many times do I have to try to tell you

That I’m sorry for the things I’ve done

But When I start to try to tell you

That’s when you have to tell me,

‘Hey, this kind of trouble’s only just begun’

I tell myself too many times

‘Why don’t you ever learn to keep your big mouth shut’

That’s why it hurts so bad to hear the words

That keep on falling from your mouth

Falling from your mouth… falling from your mouth

Tell me

Why

Why

I may be mad

I may be blind

I may be viciously unkind

But I can still read what you’re thinking

And I’ve heard too many times

That you’d be better off

Besides

Why can’t you see this boat is sinking

Let’s go down to the water’s edge

And we can cast away those doubts

Some things are better left unsaid

But they still turn me inside out

Turning me inside out

Tell me

Why…

Tell me

Why…

This is the book I never read

These are the words I never said

This is the path I’ll never tread

These are the dreams I’ll dream instead

This is the joy that seldom spread

These are the tears

The tears we shed

This is the fear

This is the dread

These are the contents of my head

And these are the years that we have spent

And this is what they represent

And this is how I feel

Do you know how I feel?

Cause I don’t think you know how I feel

I don’t think you know what I feel

I don’t think you know what I feel

You don’t know what I feel…

Wondering “why” is the epitome of my existence – then and now. My curious mind questions at a never-ending pace: I wonder and worry about myself and those I care about; I wonder about the earth, the world and our environment; and I wonder about people: where do we really come from/how do the good & bad coexist/where are we going and why are we here. The more I delve into my own personal inquiries, the more questions I come back with. So, “Why”, is and has always been a personal-technical-mental quest for me.

My other “Whys” have more to do with emotion than any technical or direct inquiry ever could. I suppose it’s an extension of the experiences that were – in my earlier experiences - inflicted upon me: my heart asked, “why?”  when my young mind was still unable to comprehend the question. It has never stopped asking.

The ‘other whys’ want to know about the pain, fear, dread and despair. The solutions were answered with music, and especially in Lennox’s song…

‘The path I’ll never tread; the dreams I’ll dream instead… the tears shed; the fear, the dread…’  

The meaning, the ability to become resilient, and the hope for my own future have been found in words and song.  Sometimes I’m not able to completely quiet the “whys”, but the music always smoothes out the roughness.

I do have many good moments… days, but I have within me a huge feeling of misunderstanding, fear, and dread, too. I think it’s a part of being chronically sick as well as chronically sad – it’s as simple as that. I believe my blog will be positive, uplifting, and hopeful; I also believe that it must be tangible, heartfelt, inspirational and REAL. There is no more simple a way to help others or myself.

I know we’ve never spoken before, and you may not even know who I am, but I feel compelled to speak to you today. Don’t worry about this letter; I am family and what I have to tell you really won’t be anything that you’ll change immediately, anyway. The things I speak of will more than likely benefit you in the next few years and beyond. I will be handing out advice – something you probably don’t get a lot of – but not criticism (something I know that you DO get a lot of). Don’t worry about how I know this; just know that I care and that you will “get it” eventually.

Ok, here is my list. Feel free to take it or leave it, but please promise me that you’ll at least consider what I have to say here:

ü      This is number one (for you and me both, believe me…). Remember those headaches that you get sometimes? Well, they really are migraines, and your mom has them, too (no, her headaches are NOT sinus – they are also migraines). Your great-grandmother – the old lady that your mom said she used to visit in Chicago – also had them, and they are genetic, handed down from her. Now, I know you’ve had some “bad ones” (Remember that one you had after getting off the plane when visiting your uncle Paul? You got so sick that you threw up all over Bonnie & Paul’s yard and sidewalk once you got to their house!! I know, it was gross and embarrassing and it didn’t help when your mom & dad yelled at you, but you must be strong, because plenty of people will do more than yell at you in the future; they won’t believe you… more on this later.), but at this point, I know you aren’t having that many. I don’t want to scare or depress you, but there will be more. I can’t say that they won’t be more painful, but they WILL last longer and your life WILL change. Also, there will be a new medicine, but you will eventually have enough trouble near menopause that this drug won’t do that well, especially if you don’t take it soon enough. This is where the next “please” comes in:

ü      Please don’t wait to do anything it is that you want to do. You will have a lot of chances: the chance to go to college (stay with me on this – I know you think that you don’t want to go, but you may change your mind; in fact, you probably will…); the chance to really do something really meaningful and AWESOME – and it’s NOT just getting married!! I know that will be something BIG to you (don’t ask me how I know it, I just do), but please – there’s that word again – please wait for that. Some really good things come out of your marriages (I meant it to be plural – don’t ask!!), but do all the other things first, if you can. Just think about it, ok? As I said earlier, these headaches will throw your life for a real loop, and you’ll manage it, but things – all things – will NOT be easy; this is why it’s vitally important to do what you need to do first. This is where I come in: I can help you know what you need to do, so that some day, you can do what you want to do!!

ü      I want to tell you to be careful with everything, but being “safe” seems to be your forte, anyway, so I won’t warn you too much concerning that one. Do find someone to talk to; you can trust what I say, but it will be hard to get in touch with me just any time you want. That’s why I’m asking you to reach out a little harder when it comes to finding people who make you happy; feel good about yourself; and who can give you great advice. Please (I know, another one!) start early in finding a professional to talk to; it will benefit all that’s happened and you’ll be surprised at just how great things can be if you get some of that “other” stuff out of the way. Sorting it out will be one of the best things you’ve ever done, and it will prevent many things I hope you never find out about.

ü      Also, I know you love to ride your bike and lay out in the sun; the bike-thing is great, and you’ll probably do a lot more of it; 48 years old is NOT too old to do any physical exercise, so know that, in this regard, you’re right on track. The sunning – not so much. The experts will tell you years from now that frying in the sun is one of the worst things to do – I’m serious! But, do enjoy and remember to stay active; it’s one of those “things” that make you happy in a not-so-happy world!

ü      Ok – now to the problem of misunderstanding and stigma: Those sick headaches, the migraines, are actually a neurological disease. They will find this out a few years from now, but many people – especially those who’ve never had one/many of the headaches or other symptoms – will not believe you or anyone else who has the disease. These misguided people (as well as many of the doctors) will misunderstand, disbelieve and trivialize the headaches; they will say, “I’ve had a headache, and I just keep working or take an aspirin – what’s your problem?” The doctors may drop you as a patient; they may refer to another doctor, and that doctor may try a few meds, but then just dismiss your pain as a ‘psychological’ issue. You will feel defeated, ridiculed and hopeless – especially since the dismissals and diagnoses comes from a “professional”; this is all part of the stigma and how society feels about headache, and many of the doctors you’ll see are no different. Also, you will lose jobs; you will be alienated from friends and people you love; and still others will talk behind your back. You must forgive them, or at least try to forgive them – even the “professionals”. These people, who seem so unkind, do not understand; they believe the information that has been propagated for generations: ‘that migraine is just a headache’; that the people who have them just want attention and are “whiners”; and that the whiners just want to get out of having to work or do things they don’t want to do. I know that this doesn’t seem like a problem now – you have so few of the headaches right now – but it will become a problem for you and for so many others. You know how bad the pain is already, but it will come as a shock to you that in the future beliefs about migraine can be so archaic and out-of –date. Well, they can be – and are. A few hundred years ago, migraine was believed to be a ‘hysterical’ disorder, and it many ways, that outlook has not changed. This outdated opinion is so much more than that: it sweeps across our country and world like the plague, and this “plague” will almost halt the research and cure that this disease needs so much. Just do this: Keep Calm and Carry On; know that you may be at the forefront of a movement to change these misconceptions and misunderstandings. Please (there I go again!) just be strong – know that there IS meaning in all of this. Try not to be depressed (it’s another part of these migraines and something I’ll explain to you later, in another letter), and don’t let a moment of your life slip by (even the painful ones, ok?). There is hope, and an image of that hope is in your lifetime! Read on…

ü      Lastly, remember that I’ll try to contact you again. I know you need someone to talk to (don’t ask, just know that I know), and I’ll be around – keeping an eye on you. Just take care of yourself; eat and do what you want; and please go to school first, ok?

Your new, but lifelong friend,

P.J.

This is my addition to the ‘Keep Calm’ Community; this poster will be the image that highlights the migraine community’s needs. These needs are:

• Hope: The ability to ‘Keep’ it in the face of blistering pain, disturbing stigma and the paralyzing fear & depression that accompany migraine disease.
• Courage: Our strength enables us to go on; courage is necessary to remain ‘Calm’.
• Research: Misunderstanding and stigma blindside research and knowledge. We will ‘Carry On’ by circulating relevant and accurate facts while dispelling old dogmas and untruths regarding migraine and headache disorders. This research will get us closer to what we need most…
• A CURE!

I had the best discussion the other day. So great, in fact, that I just have to let you and the whole world know all about it. In fact, I think I may just let you guys in on a couple of the conversations that went on during my week.

Here they are:

“You know that you’re going to have to get up early tomorrow; if you have to be at the doctor by 9:30, you’ll have to set your alarm for 7:00 A.M., at least.”

“I know. I also don’t know how I’m going to avoid having a headache; I always end up sick when I get up earlier than normal, and with the pressure of worrying about this lump, I’m even more worried. I can’t stand thinking about all this: the migraines; trying to keep up with things I want to do; wanting to babysit my new grand daughter; and now the asthma is worse. I really need to get a handle on it, but when I started taking the Singulair again, the headaches started full-force. I feel like giving up!”

“You CAN’T give up! You know how it will feel if you don’t even try. I don’t want you to regret anything, and you can’t let yourself worry about what MAY happen; you don’t even know for sure that the asthma will get worse. This may be a phase for it, and it may just be the weather. Just follow up like you said you would on that guy’s blog – the one that talked about all these new cases of asthma being caused by that bacteria; there’s a doc in Ohio that takes care of it and will be able to tell you if that’s what’s it or not. Just get some sleep, and get to the doc in the morning.”

“I know – you’re right; and I don’t have any choice. I don’t want to be like this, but I know worrying won’t make it any better. I will keep myself calm and tackle tomorrow when it gets here. I’m really glad I have you to talk to!!”

Later in the week, I had another discussion:

“I’m so sick of the mundane and same old s**t! I know I could be so much happier and get so much more done if I wasn’t planning my whole life around migraines, asthma and being broke. I would go back to school (not sure about Surg Tech or English, but I would be back there enjoying myself; being a part of learning again; and planning my career and all the things I’d have once I got my degree…), do what I want and not look like a faker-freak like everyone thinks I am.”

“ I know you want to go back to school, and I know how well you’d do, but remember that you KNOW that there really is a better plan (that may not be the one YOU chose). I know it sounds hokey, but we both know it’s true: what we become and do isn’t always up to US – it’s up to a higher power, fate, or whatever you want to call it. Remember when you belonged to CODA? You found out just how much synchronicity there is in the world. Remember all those times when you couldn’t wait to get to the meeting, but found out later that the people you wanted to talk to weren’t there that night? But then… people showed up that you’d never seen before (not even REAL members!), and they talked about EXACTLY what you had on your mind and wanted to talk about!? That was crazy, huh?!!! Well, you know from that time and all those others: just stay calm and know that you CAN be happy; you will do something important that you’ve always wanted to do (maybe you just didn’t totally realize it!!); and it may even be BETTER than going back to school! Don’t forget the Rolling Stones: ‘You can’t always get what you want, but baby, you GET WHAT YOU NEED’!!! Be patient: I’m here to help – you will be fine; just stay on track; pay attention to those things that inspire you (remember what your mom said: what you’re attracted to will just keep showing up - that’s what you’re meant to do and have; be calm, wait for it, then – pay attention!!!); and then do it!”

“I know you’re right, and I do remember all that stuff. I just get so worried and my mind starts thinking of all the possibilities of everything – anything – all the things that COULD go wrong. I get scared, I’ll admit it – then I get depressed – and then I feel sorry for myself. I’m ready to go after all those people who hurt me before (really, their people I LET hurt me – I know you know that, too…), and then I get mad and finally hopeless. My counselor taught me the techie part of it: that the brain forms pathways – permanent ones – that replay over and over, if we allow it. I believe this because I watched a doc on t.v. about it. I also know that it’s a spiritual thing, too: that I attract exactly what I think about. If I think about the negative, I attract it; if I think about all the good, I KNOW it will come. It’s already happened – the good as well as the bad. In the “old days”, all I thought about revolved around desperation, despair, and worrying/bitching/obsessing about all the bad that had happened; could  happen; and of how terrible it WOULD be and it WAS! In these past few years, although they’ve been tough (worsening migraines, asthma, money issues – I know, different subject, but still important and scary!), I have mostly kept myself positive, on-track and continued to talk to you; and you have been amazing! I want to thank you for helping me; I couldn’t ask for a better advisor – and friend! God bless you (and yes, thanks!!).

It’s true: I couldn’t have a better counselor, advisor and friend to remind me of what I need to do, HAVE to do everyday to keep myself on the right track. She knows me better than anyone, she always – eventually – knows what to say to make me feel better, and she’s always right here with… ME.

Why do I think of everything?

Is this, “thinking outside the box”?

Maybe, “pushing the envelope”?

It could be that everyone thinks like this, but they don’t tell anyone…

I might possibly just be WEIRD!

When I was a kid, I asked questions – LOTS of questions.  My parents didn’t see this question-asking as a “good” thing. They encouraged me…

 TO STOP!

My parents and I traveled often. The longest time living in any one house was no more than a year or so (and happened once); most of the time, our occupancy in the rental houses spanned from two days to a few months. I was a shy and an admittedly odd child (and I believe myself to be an odd adult, too!), and this endless roaming probably didn’t offer me much of a chance to change or to become the belle-of-the-ball, either. Most of my time was spent with my pets: we always had a dog, sometimes a cat, and my parents surprised me with a pet rat at age eight. I ended up raising these enthusiastic, confident and ecstatically curious pets the rest of my childhood and even as an adult for awhile. The rats’ confidence never “rubbed off on me” (other things did, though!), but their total, curious personalities must have; although I did start my life with an “inquiring mind”, my new pets’ influences seemed to escalate the questions even more.

My questions usually occurred during my parents’ “driving” (huh? can’t imagine why…) and went something like this:

“How many more miles ‘til we get there?” and “How many more miles are left?” (these inquiries occurred usually once each half-hour, but could easily pop up during changes of scenery or after short naps).

“Why do horses eat so much? Do frogs breathe? How many pennies really are in the world? What is gas made of? How did those sea shells get stuck in the road?”

…And so on!

My questions never really ended, and they seemed to be a lot more of the serious variety than those asked of curious two or three year-olds. I also never really believed that I was any different than any other kid (in that respect – I already knew that in all the other ways, I was very – different!), and I was promised that my “affliction” would someday  soon – be outgrown.

I waited for that day, I really did. The question-asking felt great and I always had plenty more where all the previous questions originated, but I did believe that I would feel even better (and things would go a lot smoother at home…) once the problem passed. I couldn’t wait (?!?!).

The curiosity didn’t end; I didn’t feel better; and I discovered it wasn’t an illness (not the question-asking, at least).

In fact, I finally came to realize that my questioning nature is another facet of my huge desire to understand the misunderstood; question what doesn’t seem to add up; find truth regardless of what others believe; and find the good when all that I can see at the time seems to be “bad”.  I’ve also come to believe and accept that which can’t seem to be proven. This latter “affliction” - which has been the most important one to be stuck with – has allowed me  to develop hope in hopeless situations; courage in the face of my worst fears; acceptance of people/situations that are considered “different” (boy, I can identify with that one!); and a determination that refuses to let me give in.

I’m not sure when I realized how a questioning nature could ever bring about all these other “virtues”, “gifts”, “necessities”  (possibly not until writing this prompt!), but I’m aware that many of them have been inside me, curing/maturing and seasoning for some time. It takes a long time – years, I’m sure – for all these hard lessons to “ripen” into something resembling the blessings I’ve earned. I also know that it didn’t have to turn out this way: many others who’ve been given a tough road don’t always end up where I’m at. For that, I am grateful.

 I’m blessed now because I can feel it; I realize it when I know I can’t walk away from someone who really needs me; when I rise up out of my depression after an especially bad migraine or series of them that repeatedly prevent me from living my life; and when I hang in there in spite of what’s been lost, what I might lose, or how scared I might be. I do have my moments, days and sometimes weeks of desperate isolation; complete negativity; and grounding weakness; I suppose all of us do. But I somehow always rise over it all, ready to go at whatever blocks my view of the wonderful, positive, and light. This I know, is all thanks to my childhood affliction, which I never… outgrew.

They don’t believe me;

Blistering pain is denied-

Cowering, unseen.

********************************************************************

Friends unite, strife pales.

Connection – love - assistance…

Possibility!

**********************************************************************

Pain, isolation-

Many cannot imagine

A life such as this.

*********************************************************************

Wanting to fit in;

The need to be accepted

Remains out of grasp.

*********************************************************************

Unattainable…

Peace, serenity, meaning:

How do I go on?

I am bound to you;

You are my friend.

I am your lost;

You are my found.

**********************

 Journey, suffering –

Does not matter.

My rest – your shelter,

Our entanglement resides.

**********************

 My black to your creases;

Bold colors to your bleak land.

My solace - your support;

My friend, my dear hand.

***********************

 This little bird tugged at my heart the first moment I found his picture. I feel such emotion for him; it appears that his find is all that matters in the world.

 The initial feeling is one of sadness, but my worry for the bird is heavy and deeper; it reminds me of all the suffering of the innocent and helpless. It is something I carry, subconsciously, every day – worry, darkness, fear.

Sometimes I am that bird: helpless, searching, alone.

This image also soothes me: The gracious relief is superimposed onto the dark and uncertain beneath it; it is comfort in the midst of the uncomfortable.

v     What does someone who has a chronic, life-altering, or terminal condition(s) do when they haven’t found suitable, tolerable, or sustainable treatment by the doctors who’ve been assigned to help them?

v     What does a suffering person (with a chronic, life-altering, or terminal condition(s) do) if they want to reach out to others as well as themselves in their attempt to ease the condition(s) and restore a reasonable quality of life?

v     What does this person do when he/she doesn’t necessarily agree with standard treatment, standard beliefs and standard opinions; what happens when these “treatments” fail to bring relief?

v     What if this ill person has other loves, beliefs and dreams in spite of their “tarnished” life; how can this person, restricted in many ways by their illness, express these beliefs; show his/her love/appreciation; and live his/her dreams?

v     Finally, how can a suffering, lonely and bound individual reach out to the world, break those bounds, assist other sufferers, and change humanity in the process?

 All these thoughts and more came to me in this prompt. I want to change my world and allow others to do the same for me; I want to change others’ worlds for the better, and I hope they can change mine, too; and I want ALL these changes to reverberate from one round “corner” of this planet to the next. These are my passions (and yes, I still have them, even in the midst of my pain, hopeless despair and negative moments):

• I have a need to KNOW what’s wrong with me. This is not an ego-trip designed to delight or p-off the medical community (this goes out to all the docs that generally don’t like me – oh, well…); this is my sometimes desperate, sometimes probing attempt at getting answers, getting to the REAL truth, and finding relief in a sometimes flawed system than can be negative, expensive and corrupt.
• I truly don’t want others to suffer (unless, of course, they’ve never had an actual migraine – in the midst of the misunderstanding, I’ll admit I’ve had my moments – sorry), and I have my “moments of supreme humanity”, when I want – need – require the world to know. This is true power and the answer to making this world a better place.
• Sorry for this analogy (I know you’ve heard this one somewhere else before – hmmm…): but I have an inquiring mind… I want to know the truth; I want to expose the truth; and I’m not satisfied until everyone has at least heard it. I can’t be sure what any one person, culture or group does with the info; all I can do is hope that it has made an impression, and that they will at least consider it.
• I love words! You might say, “Yeah, but what do simple, little words have to do with health, lack-of-health, suffering, and helping the world/humanity?” Well, here’s my answer: Because this is my take, my art, and my way of contributing. Words get the Truth out – the HELP out – and the KINDNESS out. Wonderful, beautiful, inspiring, and sometimes honestly brutal WORDS are my tools…

 … And information is my gift to the world…

 Well, here goes:

 More powerful… than a rogue trigger!

Able to stop cortical spreading depression in a single brainwave!

Faster than a disintegrating triptan!

X-ray aura!

Holy Kryptonite, do I have my work cut out for me!

Here is a list of my superpowers (listed, of course in their order of importance):

•      Perfect health: As any superhero knows, you must be in better shape than ANY other mere mortal. The resulting perfect health will include absolutely zero pain, zero illness/disease, and zero bodily/mental issues regarding such.

•       Perfect adaptability: In keeping with superhero tradition, myadditional powers will include the ability to adapt to any environment or situation; these include (but are not limited to): weather/barometric changes (cyclic as well as quickly-approaching thunderstorms); unplanned emergencies, unpaid bills, and unexpected stays of any related/non-related “family member”; loss of sleep, gain of sleep, weekend sleep, weekday sleep, broken sleep, fragmented sleep, cat-naps, kitty-naps, long naps, winter naps, counting sheep, black sheep, white sheep, deep sheep… well, you get the point; exertion, exercise, lack of exercise, lounging, loitering, etc.

•      Other: Lastly, all those extra intolerables that any respectable superhero MUST not be crushed by; these are: perfume, stinky trash, fish scales, fish tails, smelly feet, ugly feet, good feet, good smells, bad smells and… rain; fluorescent lighting, mood lighting, dim lighting, bright lighting, candle lights, sunlight, and sunshine on my shoulders; hormones, pheromones, menopause, menstruation, lactation, perimenopause, progesterone, estrogen, testosterone, and puberty; finally, cheese, cheese-product – (soft cheese, hard cheese, in-between-cheese, etc), lima beans, fava beans, flat beans, fat beans, round & oval beans, navy beans, as well as army/air force/marine beans, alcoholic beverages, non-alcoholic beverages, dried fruit, canned meats, fresh meats, aged meats, greet ‘n meats,  any and all nuts, MSG, EPA, EPT, ATM’s, BPA’s, NBA’s and M&M’s.

With my new superpowers and abilites, I promise to uphold the law, protect all citizens, and fight crime/migraine disease. My “day” would be like almost any other – except for the simple changes noted above (and… the fact that I’ll be rearranging the migraine community as we know it – no small feat, but I’ve got 24 hours!). With no limit to what I can accomplish, here is what that day will look like:

Ø      Removal of all foods listed previously as “triggers”. Food is nourishment, meant to be ingested and should never be labeled in the same category as Roy’s (another in my lineage of “superhero”) horse…ever.

Ø      Weather will remain a meteorological event: no victims will be taken; “barometric pressure” will now be only a measure of rain, not pain.

Ø      Lighting - previously known as “a wolf in sheep’s clothing” - will now hold no special affinity; this once superpower of it’s own will continue to brighten the world, but not our neurons.

Ø      Hormones will be sent to boot camp, taught a lesson, and reassigned as needed; perimenopause, menopause, rogue puberty and hot flashes will be considered a federal offense.

Ø      Sleep will be encouraged, but not necessary; anyone losing it will get a rain check.

Ø      “Stress” will be reclaimed as a pronunciation tool used by Italian professors during especially important exams.

Ø      Lastly, in my service to all Migraineurs and the community at large, I will restructure the word “stigma” as a reference to an exquisite, perennial heirloom flower: soft, yet resilient; common, yet extraordinary; and decidedly adaptable to any/all meteorological, chronological, hormonal, cultural, natural or manmade/judged event. A real Keeper…

 “What we think we become.”    -Buddha

“Once you make a decision, the universe conspires to make it happen.”  -Ralph Waldo Emerson

“In the universe, great acts are made up of small deeds.”  -Lao Tzu

“Courage is not simply one of the virtues, but the form of every virtue at its testing point.”   -C.S. Lewis

“Giving up is the ultimate tragedy.”   -Robert J. Donovan

“Be the change you wish to see in the world.”   -Gandhi

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow’.”   –Mary Ann Radmacher

“Whatever the mind can conceive and believe, the mind can achieve.”   -Napoleon Hill

“No one can make you feel inferior without your consent.”   -Eleanor Roosevelt

It wasn’t possible to narrow my choice of one favorite (positive) quote; I list these because they have become the blueprint for how I want to live my life. More importantly, as it is with all writing and many books in general, these quotes have become a comfort to me, much like an old or very close friend when I’m discouraged, worn out, lonely and grasping for the sand in an ocean of white foam too rough to swim out of.

 Lately, many of these quotes have given me inspiration during my pain; comfort because of the isolation caused by my pain; and empowerment during feelings of frustration, loss, and negativity because of my pain.

 How can mere words do all these powerful, magical deeds? I can’t say for sure, but for me, I’ve always been comforted by the written word: the mystical, heavy and transformative connection between the inventor/writer and the receiver/reader. These words cross the barrier between time and space and enable the reader an inside view – if taken correctly – of the writer’s mind as well as intention. When the prose is positive, the reader can expect to receive anything the writer intends to “send”; the deep and interconnectedness between giver and receiver can equal that of a close friend holding your hand during a particularly bad moment or day.

 This is how it is for me.

 I am an only child, born and raised on “the road”, as my parents described it. Being different (eventually) became my closest friend; I was alone, lonely, and looking for all the things that all children look for: acceptance, love, understanding, happiness, friends and supporters.

 Most of these “things” I found in words. The words hand me back my power when I can’t seem find it anywhere; they remind me that it was never lost.

 These quotes that I’ve come to love encompass my need for strength, understanding and inspiration; they remind me of who I am; what I should stand for; and for what I CAN do, and I am grateful.

Dear Sirs/Future Family Members,

I’ve been working on my lists for a while now, and although I’m a little worried about forgetting something, I’m confident that I’ll do just fine. I’m including photos along with my lists as I’ve been advised to take space into consideration as well as anything that I cannot feasibly replace. I have hopes that my participation in this time capsule program will be both rewarding to me as well as my future generations, and that good will come of the lessons learned regarding our health in the 21^st century.

I feel as though I know you already, and my excitement of “Opening Day” is hard to contain. I won’t be there physically, but you can count on my presence contained in this little box…

Ok, what do you think? I know, it’s a pretty long lead-in, but they let me know that paper is “king” and that what I had to spare in actual things could be made up in words (probably the wrong thing to say to someone like me, huh?). I plan on filling my capsule with as many words as possible, but do let me know your thoughts’ (I realize that I don’t have to ask – you will let me have it if I need it! You’re the best editor I know, Anne…).

Anne, I’m so happy you’re joining me in this crazy endeavor, and I know you won’t regret it!  I don’t think our physical distance will make any difference when they open those capsules and I think only good can come of our time spent on this. I know you haven’t done well with this – Crohns isn’t an easy disease – and I don’t expect that you’ll be able to work on this every day. I want to help you and you won’t be able to stop me!! HaHa   I know I have my issues too (Migraine Disease is so misunderstood, but I’m here to fix all that! LOL), but I think I can get at least one good hour or two in a day (one for me, one for you!!  I want to show you my list – that way you can get a pretty good idea of what to send me on the days you won’t be able to compile everything. We’ll get this done – don’t worry. Here’s my list:

Ø      Migraine abortives (a list, of course – how in the world can they expect me to GIVE them pills that cost $30.00 each! Ha!) and my preventatives. Since I’ve tried most of them – the anti epileptics, beta blockers, botox shots, calcium channel blockers and anti depressants – I may as well fess up and list them. (Note: go ahead and list your meds, too; I know you need them – don’t be shy here. After all, we’re sick and we may as well admit it!). Oh, and I will be including the spent boxes of the meds, so that may be something you want to include, too; there will be enough room for the flattened boxes.

Ø      Ok, I’m also listing the “fun” stuff I do as soon as I feel better. This will include a picture of my bike (love it!), photos my hiking boots, fanny pack, camera and sweaty bandana! Part of this has to include my dog, since I can’t always be sure of when I can get out;Duncan is the perfect mascot and protector when my husband is at work and I get a shot at getting out (especially when I’ve been down for a few days – Amen!).

Ø      Here’s one you can appreciate: a foods list. I know you hate to admit it, but how in the world will the ‘people of the future’ ever understand our plight if they don’t know what we can and can’t eat. I know we’re in the same boat, here so be brave and throw that food list in. I’ll be putting in what I can’t  eat – I feel that this will be a great representation of how I plan my days around what I can and can’t have. (Again, you can list yours either way or by including both what you do eat and what you can’t. No one understands your illness like you do…).

Ø      Next: I guess this part should have been included with the meds list, but since some of my “home cures” are a little unorthodox, I’m going to list them separately. My favorites (should I say, “favorite”? Ha – these are helpful, but last ditch efforts in themselves and I do feel depressed just listing them) will include: a glorified pix of my tub complete with the sight of steam rising from the almost boiling surface (not really Anne, but I know that you’ve heard me talk about how hot I get it, especially when the migraine – and triptans – have me freezing and in so much pain); and my sofa, with it’s hard arm where I lay my head so that a lot of the pain signals from those nerves in my neck get that nice numb feeling from the sofa’s pressure. This one really helps. Please list yours’ or send me the list and I’ll take care of getting them in for you, too.

Ø      Ok, this is a tough one for me, but knowing that I feel that way makes it all the more important to list it: my struggles with doctors. I’m not sure if I’ll mention each doc and what they did (or didn’t do, I might add…), or how I felt about them. I know that I will talk about my feelings of losing my power with them, and of the hopes I had before my appointments. You know I finally gave up on them, Anne, and it was because of losing my power. I felt so often like a fake, and that I really should just, “suck it up” and “take a pill”. I hated how the doctors made me feel and I know it caused me to not even believe my own illness, even though I knew inside that I really was/am sick. I just couldn’t deal with the stigma anymore, and even though I still live with this illness everyday, I now at least have my piece of mind. I want to list how therapeutic it is for me to have a friend like you and all the friends I haven’t even me that also suffer from these migraines; they are better than any pill, doctor, or preventative and the reason is: understanding. Can you believe it? How can just being believed in and understood help so much. I still have so many headaches and uncontrollable hours and days, but being in our little community of “sickies” (Ha Ha – I knew you’d love that!!), makes all that stigma just melt away at times. Even though you and I share different diseases, Anne, I want you to know you’re still my “Sister ‘O Suffering”!! (I know, silly term but you know I love ya, Sis!).

Ø      My last entry in my time capsule has to be the truth, and although I want to be positive – have to be positive – I must say it like it is: what I have lost because of this misunderstood illness (you jump in here, too, Anne…). I really hope things will be better some days, but you and I both know that we really aren’t “spring chickens” any more Anne. I want to list a picture of my college and of my hopes to finish as a Paramedic (helping other people for a change!); I want to talk about the days and time lost hanging out with my grand kids, and from there all the moments enjoying my own career, independence and money (there, I said it - MONEY!) I could have made. I can’t be honest if I don’t admit all the things I wish I could have accomplished, the feelings of being held down, planning every moment around the pain, and the time I lost and the desolate moments in between sleep when I have wept about it all. I do have a lot and I am blessed, and I really do hope for a cure or even a better treatment, but I know that funding is so limited and so restricted for migraine disease. I also know that I can’t dwell on all that I don’t have: I want to enjoy my time and I can’t stand the thought that I may waste the good days I do have with worry and regret. So I won’t!! You, either – ok? But please just let them know and try to make you capsule complete. They say that these “Health Capsules” will benefit someone, heck maybe many others – some day, so “let’s do it”.

Well, that’s it; here’s my list and I’m sticking to it!! (I know you love my humor, so just get over it girlfriend!!). We only have one week to get our items and lists in, so please let me help you (I know I already said it, but I’m saying it again, girly – I mean it, too) if you need it. I know there’s a lot of us out there, and I wish I could be “the fly on the wall”, so to speak! Really, it would be cool to know what’s in everyone’s capsule, but alas, you and I – and the rest of “us” – will never know. The capsule people told me, though, that our grand kids and family members “of the future” (funny – but that’s how they worded it to me) would have “guaranteed access” to all the info and objects we place into our capsules so to me, it feels like a little present I’m handing down to them – almost a momento – from me to my future family. Maybe it will help them in a bigger way and some of the suffering you and I have encountered will never have to happen to them. Maybe even a cure because of us…

Can you believe it, Anne?! 

 Love you,

Paula        March, 2012;    3:04 P.M.

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Anne,

I have so much to say to you and we have so much to catch up on! I want to let you know that I have recovered in a way I never thought possible. All the bad health, all the stigma – it’s all in the past now. If I’d have thought that ending migraine disease (as well as asthma – I know, I never told you that I had “that”, too! I don’t think I wanted you to worry over me any more than you already did, ok?!?), was in MY future, I don’t think I would have really believed it. I may have said that “Sure, a cure may be in my future”, but inside I don’t think it was much of a hope for me.

Well, those days are gone. Once we got the hearings approved, it seemed like it was just a normal progression to each next step. The funding came through, and grants – then the actual backing that we really needed: more and more of the famous, politically powerful, and quite a few stars, I might add, all jumped on our cause. It wasn’t over night, I would never try to make you believe that; but it was faster once the ball got on the roll (so to speak – I hate dumb clichés, but you know me!).

Please know that – drum roll please – Crohns is also a thing of the past! There, I said it! The discovery of inflammatory responses and the interconnectedness of all those disorders led to a spread of knowledge that anyone would call miraculous! You would be so proud (and so healthy now…).

I don’t want to go on and on, but a very special thing happened on the way to all these changes/CURES. And it was: meeting my family! Anne, they are the most wonderful people in the world! Of course there’s more than I can count, and I do have a difficult time keeping up with all of them, but I do have my favorites. Kelsi is 12 now and Aaron will be 8 in May. These two are the light of my life; they’ll never have to struggle, either with migraines, asthma, or CANCER! The cancer vaccine has been around about 34 years now, and all that’s required is a vaccination for prevention. If cancer is discovered, the treatment now consists of mere weeks of intense light without pain or sickness. The technology is a little more advanced than that, but you get my drift (there I go again – sorry)! My little Kelsi & Aaron’s future was sealed about 40 years before their birth; genetics now play a big part in migraine prevention and epilepsy is also old history (Yes!!!)!

Do you remember all those pictures and words about our health that went into those little capsules? Well, I’ve seen them all; yes – I’ve seen them Anne, and I’m here; it is spring, 2112. Please understand that what we and thousands of others did that day, really did make a difference. It wasn’t so much as what was in the capsules as what we put into teaching and getting our words and thoughts out there while planning them. All our voices and work to make our conditions understood were the defining factors in how the world felt about those diseases. (Remember getting everything ready? It was a crazy time, for sure!) The work that we started just to build a little time capsule got us moving, Anne. Although the cures didn’t come along for a while, the fire that was started in us as we thought about our health missions and capsules started a few million sparks out there! The rest, they say (again, sorry!!) really is history.

I want you to know, Anne, that everyone in your family is also – beautiful – just as you were. Your great(4) (this is how generations are referred to now that our median age has changed!) grand kids and mine play together, attend the same schools and share in the cures we and others like us, started. To say that you would be proud just doesn’t fit how you would feel to just meet these kids one time; they are lovely and remind me of you every minute.

How I miss you,! It has been so long, yet as I sit to write this, just one week after our capsule’s grand opening, I get the sensation of you being right here with me, still planning our next health move. Please know that your determination and support helped me even after your passing; 50 years is a long time - even now - and I still miss all of our moments together, even the “challenging” ones! HaHa (I can see you laughing as I synchro-type now).

 As I reach 149 years of age, I celebrate my time and I realize that us “Capsulies” really did do good work; we helped more than a generation: we saved our own familes.

Can you believe it, Anne?

 Love you,

Paula     April, 2112;2:26 P.M.